WorldWideScience

Sample records for intellectual disability services

  1. Ethnic Variation in Service Utilisation among Children with Intellectual Disability

    Science.gov (United States)

    Dura-Vila, G.; Hodes, M.

    2009-01-01

    Background: This study examined whether service utilisation among children with intellectual disability (ID) varied by ethnic cultural group. Method: Survey carried out in four special schools in London. Information was provided by school teachers using case files, and 242 children aged 7 to 17 years with mild and moderate ID were identified.…

  2. System Dynamics Modeling for Intellectual Disability Services: A Case Study

    Science.gov (United States)

    Duryan, Meri; Nikolik, Dragan; van Merode, Godefridus; Curfs, Leopold

    2012-01-01

    Organizations providing services to persons with intellectual disabilities (ID) are complex because of many interacting stakeholders with often different and competing interests. The combination of increased consumer demand and diminished resources makes organizational planning a challenge for the managers of such organizations. Such challenges…

  3. Organising healthcare services for persons with an intellectual disability.

    Science.gov (United States)

    Balogh, Robert; McMorris, Carly A; Lunsky, Yona; Ouellette-Kuntz, Helene; Bourne, Laurie; Colantonio, Angela; Gonçalves-Bradley, Daniela C

    2016-04-11

    When compared to the general population, persons with an intellectual disability have lower life expectancy, higher morbidity, and more difficulty finding and obtaining healthcare. Organisational interventions are used to reconfigure the structure or delivery of healthcare services. This is the first update of the original review. To assess the effects of organisational interventions of healthcare services for the mental and physical health problems of persons with an intellectual disability. For this update we searched CENTRAL, MEDLINE, EMBASE, CINAHL and other databases, from April 2006 to 4 September 2015. We checked reference lists of included studies and consulted experts in the field. Randomised controlled trials of organisational interventions of healthcare services aimed at improving care of mental and physical health problems of adult persons with an intellectual disability. We employed standard methodological procedures as outlined in the Cochrane Handbook of Systematic Reviews of Interventions, in addition to specific guidance from the Cochrane Effective Practice and Organisation of Care (EPOC) Group. We identified one new trial from the updated searches.Seven trials (347 participants) met the selection criteria. The interventions varied but had common components: interventions that increased the intensity and frequency of service delivery (4 trials, 200 participants), community-based specialist behaviour therapy (1 trial, 63 participants), and outreach treatment (1 trial, 50 participants). Another trial compared two active arms (traditional counselling and integrated intervention for bereavement, 34 participants).The included studies investigated interventions dealing with the mental health problems of persons with an intellectual disability; none focused on physical health problems. Four studies assessed the effect of organisational interventions on behavioural problems for persons with an intellectual disability, three assessed care giver burden, and

  4. Intellectual disability in Africa: implications for research and service development.

    Science.gov (United States)

    McKenzie, Judith Anne; McConkey, Roy; Adnams, Colleen

    2013-09-01

    Although intellectual disability (ID) is probably the largest impairment grouping on the African continent, few indigenous research and evaluation studies have been undertaken. This article is an initial attempt to relate service delivery issues to an African research agenda. We critically analysed the available literature, drawing on academic publications and those of non-governmental agencies. In this process we identified several key issues for further investigation, namely: understanding ID in African contexts, access to education and health care, the provision of appropriate assistance and support, and income generation. We relate our analysis to the recommendations made in the World Report on Disability but with a specific focus on ID in Africa. The need for mainstreaming and prioritising ID in non-disability related and across impairment programmes is highlighted. We note the importance of families and emphasise the need to draw on informal and traditional forms of care and participation. The need for reliable research evidence to support practice is highlighted. We conclude with a call to action by and on behalf of individuals with ID to be included in the development priorities of the continent. Implications for Rehabilitation Service provision for people with intellectual disabilities in Africa is not always well served by insights obtained from western research agendas. Appropriate and effective rehabilitation requires an understanding of the context and the environment in which the disabled person operates. Indigenous research into the provision of support to families and the inclusion of persons with intellectual disability into mainstream programmes as well as disability specific provision is recommended.

  5. Measuring quality in services for children with an intellectual disability.

    Science.gov (United States)

    Koornneef, Erik

    2006-01-01

    To evaluate the application of one particular quality measurement tool, the SERVQUAL instrument, as a potential mechanism to measure quality in services for children with disabilities Staff and family of children with an intellectual disability in two organisations providing specialist therapy and day completed an adapted SERVQUAL questionnaire. A total of 81 SERVQUAL questionnaires were distributed and 59 questionnaires were returned (response rate of 73 per cent). The SERVQUAL instrument can be considered as a useful diagnostic tool to identify particular strengths and areas for improvement in services for people with disabilities as the instrument lends itself for the monitoring of the effectiveness of quality improvement initiatives over time. The findings also showed relatively high customer expectations and the organisations involved in this research are currently not meeting all of these high expectations as significant quality gaps were found in the areas of reliability and responsiveness. The sample size was relatively small and the measurement of quality using the SERVQUAL instrument remains a challenge, due to the conceptual and empirical difficulties. The SERVQUAL instrument is probably most be attractive to service managers and funding organisations because of its ability to identify gaps in the quality of the service. The tool had been used to measure quality in services for people with disabilities and the research has shown that this tool might be an important additional quality measurement tool for services.

  6. Barriers and Enablers to Accessing Mental Health Services for People with Intellectual Disability: A Scoping Review

    Science.gov (United States)

    Whittle, Erin Louise; Fisher, Karen R.; Reppermund, Simone; Lenroot, Rhoshel; Trollor, Julian

    2018-01-01

    Background: It is well established that people with an intellectual disability have high rates of mental health problems, yet rates of uptake of services do not match need. Aim: To identify the current literature pertaining to the barriers and facilitators to access to mental health services for people with an intellectual disability. Method: A…

  7. Staff Stress and Burnout in Intellectual Disability Services: Work Stress Theory and Its Application

    Science.gov (United States)

    Devereux, Jason; Hastings, Richard; Noone, Steve

    2009-01-01

    Background: Staff in intellectual disability services can be at risk of stress and burnout at work. Given that staff well-being has implications for the quality of life of the staff themselves and people with intellectual disabilities themselves, this is an important research and practical topic. In this paper, we review work stress theories that…

  8. AGING ADULTS WITH INTELLECTUAL DISABILITIES: PERSPECTIVES ON EMERGING SERVICE CONCERNS

    Directory of Open Access Journals (Sweden)

    Matthew P. JANICKI

    2010-04-01

    Full Text Available With improved general health status many adults with intellectual disabilities (ID are living to old age, much like other adults. The World Health Organization has recognized the needs of this older population and identified the challenges they pose for governmental ministries and non-governmental organizations charged with planning, advocacy, financing, and delivery of specialty lifecare services and rehabilitation programs. These challenges include a range of issues normally confronting older adults, such as pensioning and financial security, changes in lifestyles associated with retirement and adaptations to living arrangements and housing, modifications in daily activities and community inclusion, changing physical and sensory abilities, and greater demands for support for aging families and other carers. As older adults with ID may also be affected by latelife or age-related conditions and begin to experience secondary impairments, these challenges may be more pronounced when encountered by NGOs located in countries with developing market economies. In these instances, the onus on promoting healthy aging will fall upon national entities which are responsible for targeting people with disabilities from infancy and childhood, and providing lifelong supports for adolescents, adults, and families. Ideally, if such efforts are undertaken early, they will lead to actions that can be undertaken to promote better health as people with ID age and ensure that the latter part of their lives are experienced as ‘quality of life years.’

  9. In-school service predictors of employment for individuals with intellectual disability.

    Science.gov (United States)

    Park, Jiyoon; Bouck, Emily

    2018-04-17

    Although there are many secondary data analyses of the National Longitudinal Transition Study-2 (NLTS-2) to investigate post-school outcome for students with disabilities, there has been a lack of research with in-school service predictors and post-school outcome for students with specific disability categories. This study was a secondary data analysis of NLTS-2 to investigate the relationship between current employment status and in-school services for individuals with intellectual disability. Statistical methods such as descriptive statistics and logistic regression were used to analyze NLTS-2 data set. The main findings included that in-school services were correlated with current employment status, and that primary disability (i.e., mild intellectual disability and moderate/severe intellectual disability) was associated with current employment status. In-school services are critical in predicting current employment for individuals with intellectual disability. Also, data suggest additional research is needed to investigate various in-school services and variables that could predict employment differences between individuals with mild and moderate/severe intellectual disability. Copyright © 2018 Elsevier Ltd. All rights reserved.

  10. Service Providers' Perceptions of Active Ageing among Older Adults with Lifelong Intellectual Disabilities

    Science.gov (United States)

    Buys, L.; Aird, R.; Miller, E.

    2012-01-01

    Background: Considerable attention is currently being directed towards both active ageing and the revising of standards for disability services within Australia and internationally. Yet, to date, no consideration appears to have been given to ways to promote active ageing among older adults with intellectual disabilities (IDs). Methods:…

  11. Psychopathology of adolescents with an intellectual disability who present to general hospital services.

    Science.gov (United States)

    Theodoratos, Oreste; McPherson, Lyn; Franklin, Catherine; Tonge, Bruce; Einfeld, Stewart; Lennox, Nicholas; Ware, Robert S

    2017-10-01

    Adolescents with intellectual disability have increased rates of psychopathology compared with their typically developing peers and present to hospital more frequently for ambulant conditions. The aim of this study is to describe the psychopathology and related characteristics of a sample of adolescents with intellectual disability who presented to general hospital services. We investigated a cohort of adolescents with intellectual disability in South East Queensland, Australia between January 2006 and June 2010. Demographic and clinical data were obtained via mailed questionnaires and from general practice notes. Psychopathology was measured with the Short Form of the Developmental Behaviour Checklist. Of 98 individuals presenting to hospital, 71 (72.5%) had significant levels of psychopathology. Unknown aetiology for the intellectual disability was associated with presence of problem behaviours. Adolescents with more severe intellectual disability were more likely to have major problem behaviours. Co-morbid physical health issues were not associated with psychopathology. Only 12 (12.1%) adolescents had undergone specialized mental health intervention. The general hospital environment may offer opportunities for liaison psychiatry services to screen and provide management expertise for adolescent individuals with intellectual disability presenting for physical health issues.

  12. Service Development for Intellectual Disability Mental Health: A Human Rights Approach

    Science.gov (United States)

    Evans, E.; Howlett, S.; Kremser, T.; Simpson, J.; Kayess, R.; Trollor, J.

    2012-01-01

    Background: People with intellectual disability (ID) experience higher rates of major mental disorders than their non-ID peers, but in many countries have difficulty accessing appropriate mental health services. The aim of this paper is to review the current state of mental health services for people with ID using Australia as a case example, and…

  13. Health Services Use and Costs for Americans with Intellectual and Developmental Disabilities: A National Analysis

    Science.gov (United States)

    Fujiura, Glenn T.; Li, Henan; Magaña, Sandy

    2018-01-01

    Health services and associated costs for adults with intellectual and developmental disabilities (IDD) were nationally profiled and the predictors of high expense users statistically modeled. Using linked data from the National Health Interview Survey and Medical Expenditure Panel Survey for the years 2002 through 2011, the study found a mixed…

  14. Early Onset Ageing and Service Preparation in People with Intellectual Disabilities: Institutional Managers' Perspective

    Science.gov (United States)

    Lin, Jin-Ding; Wu, Chia-Ling; Lin, Pei-Ying; Lin, Lan-Ping; Chu, Cordia M.

    2011-01-01

    Although longevity among older adults with intellectual disabilities is increasing, there is limited information on their premature aging related health characteristics and how it may change with increasing age. The present paper provides information of the institutional manager's perception on early onset aging and service preparation for this…

  15. Intellectual disability

    Science.gov (United States)

    ... below average Development way below that of peers Intelligence quotient (IQ) score below 70 on a standardized ... Social. Nutrition programs can reduce disability associated with malnutrition. Early intervention in situations involving abuse and poverty ...

  16. Mothers with intellectual disabilities

    OpenAIRE

    Kolarič, Sandra

    2015-01-01

    For the theoretical part of this master's thesis foreign literature and finished foreign researches were studied. In this part of the thesis the characteristics of mothers with intellectual disabilities; factors, which influence the success of carrying out their mother role; and the rights of people with intellectual disabilities as parents, all based on Slovene legislation are included. We listed reasons for limiting reproduction for women with intellectual disabilities and issues concerning...

  17. Innovative methods and tools for professionals working in supported living services for intellectually disabled persons.

    Science.gov (United States)

    Gruiz, Katalin

    2015-01-01

    Autonomy of mid-seriously and seriously intellectually disabled persons is encouraged both by legislations on human rights and the modern social care and services. The process leading to the maximum possible autonomy is illustrated by a developmental spiral in our model. Specialty of the development is that the personal educational projects are realized during everyday activities. The process requires conscious professionals with an empowering and motivating attitude, with adult relationship to the intellectually disabled persons and versatile skills and tools. In this educational relationship the social professional and the supported person are equal partners moving together along the spiral of human development. An innovative tool-battery has been developed aiding support-staff in the 'pedagogical' task embedded into everyday social services. The tool-battery and its first application in supported living services of the Hungarian Down Foundation are introduced in this paper.

  18. Community managed services for persons with intellectual disability: Andhra Pradesh experience.

    Science.gov (United States)

    Narayan, Jayanthi; Pratapkumar, Raja; Reddy, Sudhakara P

    2017-09-01

    In resource poor settings innovative and bottom-up approaches are required to provide services to people with with disabilities. In this context, the present paper explains a community-based model of manpower development and coordination of services for people with intellectual disabilities in unified state of Andhra Pradesh in India. Women with disabilities from the village were identified, and those willing to be trained to work as community resource persons (CRPs) were selected and given hands-on training in a phased manner. A total of 130 women were trained in five groups of 25-30 per group and were deployed in the community to screen, identify and refer children with intellectual disabilities. The training content included basic stimulation and interface with functionaries of other government departments of health, education and welfare to ensure comprehensive service delivery. Neighbourhood centres (NHCs) were established where the CRPs could meet with families collectively. The results indicated that the CRPs were welcomed by the families. The NHCs established primarily as recreation centres, promoted inclusion and functioned as information dissemination centre. The services provided by the CRPs were owned and monitored by the Women's self-help group and the disability groups thus ensuring sustainability of the model.

  19. Early onset ageing and service preparation in people with intellectual disabilities: institutional managers' perspective.

    Science.gov (United States)

    Lin, Jin-Ding; Wu, Chia-Ling; Lin, Pei-Ying; Lin, Lan-Ping; Chu, Cordia M

    2011-01-01

    Although longevity among older adults with intellectual disabilities is increasing, there is limited information on their premature aging related health characteristics and how it may change with increasing age. The present paper provides information of the institutional manager's perception on early onset aging and service preparation for this population. We used purposive sampling to recruit 54 institutional managers who care for people with intellectual disabilities in Taiwan. The present study employed a cross-sectional design using a self-administrative structured questionnaire that was completed by the respondents in November 2009. The results showed that more than 90% of the respondents agreed with earlier onset aging characteristics of people with ID. However, nearly all of the respondents expressed that the government policies were inadequate and the institution is not capable of caring for aging people with ID, and more than half of them did not satisfy to their provisional care for this group of people. With regard to the service priority of government aging policy for people with ID, the respondent expressed that medical care, financial support, daily living care were the main areas in the future policy development for them. The factors of institutional type, expressed adequacy of government's service, respondent's job position, age, and working years in disability service were variables that can significantly predict the positive perceptions toward future governmental aging services for people with ID (adjusted R(2) = 0.563). We suggest that the future study strategy should underpin the aging characteristics of people with intellectual disabilities and its differences with general population to provide the useful information for the institutional caregivers. Copyright © 2010 Elsevier Ltd. All rights reserved.

  20. Intellectual disability and homelessness.

    Science.gov (United States)

    Mercier, C; Picard, S

    2011-04-01

    The association between poverty and intellectual disability (ID) has been well documented. However, little is known about persons with ID who face circumstances of extreme poverty, such as homelessness. This paper describes the situation of persons with ID who were or are homeless in Montreal and are currently receiving services from a team dedicated to homeless persons. (1) To describe the characteristics, history and current situation of these persons; and (2) to report within-group differences as a function of gender and current residential status. The data were collected from files using an anonymous chart summary. Descriptive statistics on the whole sample (n = 68) and inferential statistics on cross-tabulations by gender and residential status were performed. Persons with ID exhibited several related problems. Some of these persons, primarily women, experienced relatively short periods of homelessness and their situations stabilised once they were identified and followed up. Other persons with ID experienced chronic homelessness that appeared to parallel the number and severity of their other problems. When compared with a previous epidemiological study of the homeless in Montreal, the population of homeless persons with ID differed from the overall homeless population in a number of respects. The results suggest prevention and intervention targets. The need for epidemiological research appears particularly clear in light of the fact that below-average intellectual functioning has been identified as a risk factor for homelessness and a predisposing factor for vulnerability among street people. © 2011 The Authors. Journal of Intellectual Disability Research © 2011 Blackwell Publishing Ltd.

  1. What is an Intellectual Disability?

    Science.gov (United States)

    ... for Educators Search English Español What Is an Intellectual Disability? KidsHealth / For Kids / What Is an Intellectual Disability? ... learning and becoming an independent person. What Causes Intellectual Disabilities? Intellectual disabilities happen because the brain gets injured ...

  2. Anesthesia for intellectually disabled

    Directory of Open Access Journals (Sweden)

    Kapil Chaudhary

    2017-01-01

    Full Text Available Anesthetizing an intellectually disabled patient is a challenge due to lack of cognition and communication which makes perioperative evaluation difficult. The presence of associated medical problems and lack of cooperation further complicates the anesthetic technique. An online literature search was performed using keywords anesthesia, intellectually disabled, and mentally retarded and relevant articles were included for review. There is scarcity of literature dealing with intellectually disabled patients. The present review highlights the anesthetic challenges, their relevant evidence-based management, and the role of caretakers in the perioperative period. Proper understanding of the associated problems along with a considerate and unhurried approach are the essentials of anesthetic management of these patients.

  3. Day Service Provision for People with Intellectual Disabilities: A Case Study Mapping 15-Year Trends in Ireland

    Science.gov (United States)

    Fleming, Padraic; McGilloway, Sinead; Barry, Sarah

    2017-01-01

    Background: Day services for people with intellectual disabilities are experiencing a global paradigm shift towards innovative person-centred models of care. This study maps changing trends in day service utilization to highlight how policy, emergent patterns and demographic trends influence service delivery. Methods: National intellectual…

  4. Services in the Community for Adults with Psychosis and Intellectual Disabilities: A Delphi Consultation of Professionals' Views

    Science.gov (United States)

    Hemmings, C. P.; Underwood, L. A.; Bouras, N.

    2009-01-01

    Background: There remains a severe lack of evidence on the effectiveness of community services for adults with psychosis and intellectual disabilities (ID). There has been little consensus even of what services should provide for this service user group. Method: A consultation of multidisciplinary professionals was carried out by using a…

  5. The effect of parental intellectual disability status on child protection service worker decision making.

    Science.gov (United States)

    Proctor, S N; Azar, S T

    2013-12-01

    There is evidence to suggest that parents with an intellectual disability (ID) constitute a higher proportion of child-protective services (CPS) cases than would be expected based on the prevalence of ID in the general population. Researchers have suggested that the stereotypic assumptions and expectations that CPS workers have about parents with an ID might influence decisions and responses made to such parents. This study examined whether parental ID (having an ID vs. not) had an effect on CPS workers' emotional reactions, attributions and decisions about risk to the child, whether to remove the child and workers' general willingness to help the parent. Two hundred and twelve CPS workers read vignettes describing parents who were labelled as either having or not having an ID. Workers responded to the vignettes by making ratings of their emotional reactions, attributions and decisions regarding risk, removal and helping. CPS workers made significantly higher ratings of pity, willingness to help and risk for parents with an ID than for parents without an ID. Lower ratings of anger and disgust were found for parents with an ID than for parents without an ID. Parents' intellectual status did not have a direct effect on workers' attributions or removal decisions. The results show evidence for the influence of stereotypes regarding parental ID due to its differential effect on CPS workers' emotional reactions and decisions about child risk and their willingness to help. © 2012 The Authors. Journal of Intellectual Disability Research © 2012 John Wiley & Sons Ltd, MENCAP & IASSID.

  6. Medicaid Personal Care Services for Children with Intellectual Disabilities: What Assistance Is Provided? When Is Assistance Provided?

    Science.gov (United States)

    Elliot, Timothy R.; Patnaik, Ashweeta; Naiser, Emily; Fournier, Constance J.; McMaughan, Darcy K.; Dyer, James A.; Phillips, Charles D.

    2014-01-01

    We report on the nature and timing of services provided to children with an intellectual disability (ID) identified by a new comprehensive assessment and care planning tool used to evaluate children's needs for Medicaid Personal Care Services (PCS) in Texas. The new assessment procedure resulted from a legal settlement with the advocacy community.…

  7. Ethnic Factors in Mental Health Service Utilisation among People with Intellectual Disability in High-Income Countries: Systematic Review

    Science.gov (United States)

    Dura-Vila, G.; Hodes, M.

    2012-01-01

    Background: An emerging literature suggests that ethnic and cultural factors influence service utilisation among people with intellectual disability (ID), but this has not previously been reviewed. Aims: To investigate possible ethnic variation in uptake of mental health services in children, adolescents and adults with ID in high-income…

  8. Intellectual Disability and Parenthood

    Directory of Open Access Journals (Sweden)

    Isack Kandel

    2005-01-01

    Full Text Available Parenthood in persons with intellectual disability (ID is an issue of concern for the family, guardians, and professionals as there are many sentiments and problems involved: financial, technical, medical, legal, and above all moral. People with intellectual, developmental, or other disabilities have feelings, want relationships, and are able to have children also. The attitude of society has changed through time from the early eugenic concern with heredity and fertility, to a focus on the risk to the children due to parental neglect or abuse, to acceptance and a search for solutions to parental training and support. This change can be seen as a result of a shift from institutional care to community care and normalization. This paper reviews available research, prevalence, service issues, experience from around the world, and relates to the situation in Israel. Jewish Law has been very progressive regarding the possibility of marriage between persons with ID (in contrast to American Law where historically this right has been denied, until recently. Recent research has shown that, in the case of such a union resulting in children, although they require some supervision, family, friends, and social welfare agencies have scrutinized these families so much they are in constant fear of their child being taken away. There is little information on the number of such cases and an overall dearth of information on the effects on the children, although one recent study from the U.K. has shown a varied picture of resilience and a close, warm relationship later on with the family and especially the mother.

  9. Promoting Exercise as Part of a Physiotherapy-Led Falls Pathway Service for Adults with Intellectual Disabilities: A Service Evaluation

    Science.gov (United States)

    Crockett, Jennifer; Finlayson, Janet; Skelton, Dawn A.; Miller, Gillian

    2015-01-01

    Background: People with intellectual disabilities experience high rates of falls. Balance and gait problems are common in people with intellectual disabilities, increasing the likelihood of falls; thus, tailored exercise interventions to improve gait and balance are recommended. The present authors set up a physiotherapy-led falls pathway service…

  10. Psychiatric Services for Individuals with Intellectual and Developmental Disabilities: Medication Management

    Science.gov (United States)

    Russell, Andrew T.; Hahn, Joan Earle; Hayward, Katharine

    2011-01-01

    The purpose of this study was to describe the medication management and treatment provided in a specialty outpatient psychiatry clinic for 198 community-residing children and adults with intellectual disability and other developmental disabilities (IDD) referred to the clinic and discharged between 1999 and 2008. Using a descriptive design, data…

  11. Sexuality and Intellectual Disability

    Science.gov (United States)

    ... for loving and fulfilling relationships with others. Individual rights to sexuality, which is essential to human health and well-being, have been denied. This loss has negatively affected people with intellectual disabilities in gender identity, friendships, self-esteem, body image ...

  12. Physical education teachers' attitudes towards children with intellectual disability: the impact of time in service, gender, and previous acquaintance.

    Science.gov (United States)

    Ozer, D; Nalbant, S; Aǧlamıș, E; Baran, F; Kaya Samut, P; Aktop, A; Hutzler, Y

    2013-11-01

    This study investigated attitudes towards teaching students with intellectual disability (ID) within a representative sample of secondary school physical education (PE) teachers, and to determine the effects of age, gender, teaching experience, and having acquaintance with ID and students with ID on their attitudes. Participants were 729 secondary school PE teachers who worked in 81 major cities of Turkey. The Teachers Attitudes towards Children with Intellectual Disability Scale was administered. The statistical analysis revealed that there was no significant effect on factors and total attitudes scores of gender and having students with ID. Significant effects on factors and total attitudes score were found in teaching experiences and having acquaintance with ID. It is encouraged to maintain and further develop in-service education programmes of adapted physical activity for PE teachers. © 2012 The Authors. Journal of Intellectual Disability Research © John Wiley & Sons Ltd, MENCAP & IASSID.

  13. A Comparison of Quality of Life Outcomes for People with Intellectual Disabilities in Supported Employment, Day Services and Employment Enterprises

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    Beyer, Stephen; Brown, Tony; Akandi, Rachel; Rapley, Mark

    2010-01-01

    Background: Policy objectives for people with intellectual disabilities include day service modernization and the promotion of paid employment and quality of life. Quality of life is under represented as an outcome measure in vocational research. This research compares subjective and objective quality of life, and quality of work environment for…

  14. Participant Direction for People with Intellectual and Developmental Disabilities in Medicaid Home and Community Based Services Waivers

    Science.gov (United States)

    Friedman, Carli

    2018-01-01

    Participant direction allows people with intellectual and developmental disabilities (IDD) and/or their families to direct services; in doing so, participant direction shifts participants from passive recipients to active consumers. Medicaid encourages, but does not require, states to allow participant direction. The aim of this study was to…

  15. Personality Disorders in Offenders with Intellectual Disability: A Comparison of Clinical, Forensic and Outcome Variables and Implications for Service Provision

    Science.gov (United States)

    Alexander, R. T.; Green, F. N.; O'Mahony, B.; Gunaratna, I. J.; Gangadharan, S. K.; Hoare, S.

    2010-01-01

    Aim: To establish any differences between patients with and without a diagnosis of personality disorders, being treated in a secure inpatient service for offenders with intellectual disability (ID) in the UK. Method: A cohort study involving a selected population of people with ID and offending behaviours. Results: The study included a total of…

  16. The Clinical, Forensic and Treatment Outcome Factors of Patients with Autism Spectrum Disorder Treated in a Forensic Intellectual Disability Service

    Science.gov (United States)

    Esan, Fola; Chester, Verity; Gunaratna, Ignatius J.; Hoare, Sudeep; Alexander, Regi T.

    2015-01-01

    Background: To describe the characteristics of those with autism spectrum disorder (ASD) treated within a forensic intellectual disability hospital and to compare them with those without ASD. Method: Service evaluation of a cohort of 138 patients treated over a 6-year period. Results: Of the 138, 42 had an ASD. Personality disorders and harmful…

  17. Low intensity behavioral treatment supplementing preschool services for young children with autism spectrum disorders and severe to mild intellectual disability

    NARCIS (Netherlands)

    Peters-Scheffer, N.C.; Didden, H.C.M.; Mulders, M.; Korzilius, H.P.L.M.

    2010-01-01

    This study evaluated the effectiveness of low intensity behavioral treatment (on average 6.5 h per week) supplementing preschool services in 3-6-year-old children with autism spectrum disorder and severe to mild intellectual disability. Treatment was implemented in preschools (i.e., daycare centers)

  18. 'What vision?': experiences of Team members in a community service for adults with intellectual disabilities.

    Science.gov (United States)

    Clare, I C H; Madden, E M; Holland, A J; Farrington, C J T; Whitson, S; Broughton, S; Lillywhite, A; Jones, E; Wade, K A; Redley, M; Wagner, A P

    2017-03-01

    In the UK, the closure of 'long-stay' hospitals was accompanied by the development of community teams (CTs) to support people with intellectual disabilities (IDs) to live in community settings. The self-reported experiences of staff working in such teams have been neglected. Focusing on a single county-wide service, comprising five multi-disciplinary and inter-agency CTs, we measured perceptions among the health care and care management Team members of (1) their personal well-being; (2) the functioning of their team; and (3) the organisation's commitment to quality, and culture. Almost three-quarters of the questionnaires were returned (73/101; 72%). The scores of health care practitioners and care managers were very similar: (1) the MBI scores of more than half the respondents were 'of concern'; (2) similarly, almost four in ten respondents' scores on the Vision scale of the TCI were 'of concern'; (3) the perceived commitment to quality (QIIS-II Part 2) was uncertain; and (4) the organisational culture (QIIS-II, Part 1) was viewed as primarily hierarchical. The perceived absence of a vision for the service, combined with a dominant culture viewed by its members as strongly focussed on bureaucracy and process, potentially compromises the ability of these CTs to respond proactively to the needs of people with IDs. Given the changes in legislation, policy and practice that have taken place since CTs were established, it would be timely to revisit their role and purpose. © 2016 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

  19. Quality of care and service trajectories for people with intellectual disabilities: defining the aspects of quality from the client's perspective.

    Science.gov (United States)

    Barelds, Anna; van de Goor, Ien; van Heck, Guus; Schols, Jos

    2010-03-01

    Care and service trajectories for people with intellectual disabilities (i.e. people with mental retardations) are routes within the healthcare delivery system that consist of all the steps that people with intellectual disabilities and their families have to take in order to realise the needed care and services. This article aims to identify the quality aspects of trajectories that are considered important by people with intellectual disabilities and their parents/relatives. In addition, it examines how these aspects are related to quality determinants mentioned in the literature on integrated care and to authoritative models for quality assessment of care and service delivery. Quality aspects were collected during eight focus group discussions with people with intellectual disabilities or their parents/relatives. In addition, quality determinants of integrated care and authoritative models for quality assessment were selected by means of a thorough review of the literature. Finally, the quality aspects identified using focus groups were compared to the determinants and models found in the literature. The quality aspects presented by people with intellectual disabilities referred particularly to the immediate situation in receiving care and services, such as 'keeping appointments' and 'time and attention', whereas parents/relatives also referred to broader 'organisational issues', such as 'access to support' and 'problems with placement'. The quality aspects, however, are minimally related to the quality determinants of integrated care, probably because clients and their parents/relatives find it difficult to have an overview of the coherence between the various actions that have to be performed, when going through the trajectories. In contrast, the quality aspects seem to fit into the domains of the authoritative models for quality assessment, probably because of the minimal focus of the models on long-term aspects in care and service delivery.

  20. Perspectives of intellectual disability in Mexico: epidemiology, policy, and services for children and adults.

    Science.gov (United States)

    Katz, Gregorio; Márquez-Caraveo, Maria E; Lazcano-Ponce, Eduardo

    2010-09-01

    Intellectual disability is a public health issue, which has largely been overlooked in Mexico. The magnitude of this problem is unknown; few programs exist for adults and mental health professionals focus mainly on identifying treatable comorbidities. In Mexico, there is an example of a best practice in social integration. This program has benefited hundreds of adults with intellectual disability by teaching four basic abilities: practical academic skills; vocational skills; independent living skills; and skills for community integration. In a sociocultural and economic context such as Mexico's, social integration programs are feasible and necessary in order to provide an organized social response to the health, social, and vocational needs of people with intellectual disability and should become part of public policy.

  1. Understanding Intellectual Disability through Rasopathies

    OpenAIRE

    Alvaro, San Martín; Rafael, Pagani Mario

    2014-01-01

    Intellectual disability, commonly known as mental retardation in the International Classification of Disease from World Health Organization, is the term that describes an intellectual and adaptive cognitive disability that begins in early life during the developmental period. Currently the term intellectual disability is the preferred one. Although our understanding of the physiological basis of learning and learning disability is poor, a general idea is that such condition is quite permanent...

  2. [Cooperation between nursing homes and intellectual disability care services : State of affairs in Flanders].

    Science.gov (United States)

    Campens, J; Schiettecat, T; Vervliet, M; Van Heck, L; Lesseliers, J; Goethals, I; De Witte, N

    2017-10-01

    Considering the increasing life expectancy of people with intellectual disabilities (ID), the importance of cooperation between services for people with ID and elderly care services has been stressed in Flanders and the Netherlands, as well as internationally. However, the prevalence, intensity and content of such a cooperation are yet unknown. In order to gain information to address this issue, an online-survey was delivered to directors of all nursing homes in Flanders (n = 781). 229 surveys were completed.In more than 75% of the nursing homes, people with ID were among the residents over the past decade. However, at the same time a lack of expertise has been identified as a barrier to provide them optimal care and support. Hence, the respondents point out that a cooperation with ID care services could be beneficial. Nevertheless, those partnerships only arose in a quarter of the nursing homes so far, primarily for the purpose of exchange of expertise. Intersectoral multidisciplinary consultations and intersectoral care team consultations have been taking place as well, be it mainly in the context of a persons' transition from an ID care service to a nursing home. Until now, radical cooperations which involve an exchange of staff, seem to be rather rare.

  3. Sibling advocates of people with intellectual disabilities.

    Science.gov (United States)

    Ying Li, Eria Ping

    2006-06-01

    The aim of this study was to examine the experience of the first generation of sibling advocates in Hong Kong. A qualitative approach was adopted and six sibling advocates of people with intellectual disabilities from one non-government organization were interviewed. Data were analyzed using a constant comparative method and content analysis. Findings revealed that the six participants were reactive in the process of taking up the caregiver responsibility and they performed three functions: to advocate for more service provision, to improve service quality, and to facilitate communication between individual service units and family members of people with intellectual disabilities. All of the participants expressed that they needed support from service providers when they tried to function as the sibling advocates. Strategies to promote the involvement of siblings of people with intellectual disabilities as advocates are discussed and it is expected that more siblings of people with intellectual disabilities will be supported to have a higher level of involvement in advocacy.

  4. Active Aging for Individuals with Intellectual Disability: Meaningful Community Participation through Employment, Retirement, Service, and Volunteerism

    Science.gov (United States)

    Fesko, Sheila Lynch; Hall, Allison Cohen; Quinlan, Jerrilyn; Jockell, Catherine

    2012-01-01

    As individuals with intellectual and developmental disabilities become more engaged in community employment, it will be critical to consider how their employment experience changes as they age. Similar to other seniors, individuals will need to consider whether they want to maintain their employment, reduce their work commitment, or retire…

  5. Family and Staff Perspectives on Service Use for Individuals with Intellectual Disabilities in Crisis

    Science.gov (United States)

    McMorris, Carly A.; Weiss, Jonathan A.; Cappelletti, Gabriella; Lunsky, Yona

    2013-01-01

    Carers of individuals with an intellectual disability are often responsible for managing their children's psychiatric crises when they arise. The purpose of this study was to examine the experiences of families using crisis and short-term transitional supports from the perspectives of families and of crisis and transitional support staff. Three…

  6. Developing Measures of Job Performance for Support Staff in Housing Services for People with Intellectual Disabilities

    Science.gov (United States)

    Hatton, Chris; Wigham, Sarah; Craig, Jaime

    2009-01-01

    Background: There is an absence of research concerning the assessment of housing support worker job performance, particularly in the development of job performance measures that reflect the priorities of people with intellectual disabilities and their families. Method: A worker-oriented job analysis method was used to develop four short job…

  7. Perpetrators of Domestic Violence Abuse within Intellectual Disability Services: A Hidden Population?

    Science.gov (United States)

    Swift, Charlotte; Waites, Erin; Goodman, Wendy

    2018-01-01

    Background: Domestic violence abuse (DVA) has been identified by the UK Government as a priority to address. Whilst there is a growing body of research into perpetrators of DVA from the mainstream population, there is scant research into perpetrators of DVA who have an intellectual disability. This lack of an evidence base suggests there may be a…

  8. Epidemiology of Epilepsy in Older Adults with an Intellectual Disability in Ireland: Associations and Service Implications

    Science.gov (United States)

    McCarron, Mary; O'Dwyer, Marie; Burke, Eilish; McGlinchey, Eimear; McCallion, Philip

    2014-01-01

    There are limited studies on the prevalence of epilepsy and co-morbid conditions in older adults with an ID. To begin to address this prevalence of epilepsy was estimated for participants in the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing. Associations with demographic variables and co morbid health conditions were…

  9. Correlates of Restraint and Seclusion for Adults with Intellectual Disabilities in Community Services

    Science.gov (United States)

    Merineau-Cote, J.; Morin, D.

    2013-01-01

    Background: Some individuals with intellectual disabilities (IDs) exhibit aggressive behaviour directed towards themselves, others or the environment. Displaying aggressive behaviour is associated with a number of negative consequences such as the exposure to restrictive interventions. This study aims to identify personal and environmental factors…

  10. An Initial Evaluation of Direct Care Staff Resilience Workshops in Intellectual Disabilities Services

    Science.gov (United States)

    Ingham, Barry; Riley, Jenny; Nevin, Helen; Evans, Gemma; Gair, Elodie

    2013-01-01

    The emotional responses to challenging behaviour of direct care staff who support people with intellectual disabilities is thought to be an important mediating factor within the stress experienced by staff and a potential maintaining factor in challenging behaviour. A brief workshop to improve direct care staff resilience was developed and…

  11. Mortality of People with Intellectual and Developmental Disabilities from Select US State Disability Service Systems and Medical Claims Data

    Science.gov (United States)

    Lauer, Emily; McCallion, Philip

    2015-01-01

    Background: Monitoring population trends including mortality within subgroups such as people with intellectual and developmental disabilities and between countries provides crucial information about the population's health and insights into underlying health concerns and the need for and effectiveness of public health efforts. Methods: Data from…

  12. Disability impact and coping in mothers of children with intellectual disabilities and multiple disabilities.

    Science.gov (United States)

    Kishore, M Thomas

    2011-12-01

    Understanding the disability impact on parenting and caregiving is important for intervention. The present study was designed to understand the differences in perceived disability impact and related coping in mothers having children with intellectual disabilities alone compared to those having children with intellectual disabilities and additional disabilities. Accordingly, 30 mothers of children with intellectual disabilities and 30 mothers of children with intellectual and additional disabilities were assessed for disability impact and coping. Group differences for disability impact were present in specific domains but not overall. Despite variations in coping pattern, both positive and negative coping strategies were observed in both groups. The results may imply that the impact of intellectual disability is so pervasive that except in certain domains mothers may not perceive the further impact of additional disabilities. Positive coping does not rule out negative coping strategies. These findings have specific relevance to service delivery in a cultural context.

  13. Social Service Utilisation Patterns among Children with Mild Intellectual Disability--Differences between Children Integrated into Mainstream Classes and Children in Self-Contained Classes

    Science.gov (United States)

    Olsson, Lena M.; Elgmark Andersson, Elisabeth; Granlund, Mats; Huus, Karina

    2015-01-01

    Background: Children with a mild intellectual disability (ID) and their families often require social services; however, because of the characteristics of the formal service system, these families may be at risk of not receiving necessary services. The aim of this study was to obtain knowledge regarding the types and number of services that…

  14. Understanding intellectual disability through RASopathies.

    Science.gov (United States)

    San Martín, Alvaro; Pagani, Mario Rafael

    2014-01-01

    Intellectual disability, commonly known as mental retardation in the International Classification of Disease from World Health Organization, is the term that describes an intellectual and adaptive cognitive disability that begins in early life during the developmental period. Currently the term intellectual disability is the preferred one. Although our understanding of the physiological basis of learning and learning disability is poor, a general idea is that such condition is quite permanent. However, investigations in animal models suggest that learning disability can be functional in nature and as such reversible through pharmacology or appropriate learning paradigms. A fraction of the cases of intellectual disability is caused by point mutations or deletions in genes that encode for proteins of the RAS/MAP kinase signaling pathway known as RASopathies. Here we examined the current understanding of the molecular mechanisms involved in this group of genetic disorders focusing in studies which provide evidence that intellectual disability is potentially treatable and curable. The evidence presented supports the idea that with the appropriate understanding of the molecular mechanisms involved, intellectual disability could be treated pharmacologically and perhaps through specific mechanistic-based teaching strategies. Copyright © 2014 Elsevier Ltd. All rights reserved.

  15. The Impact of Support Services on Students' Test Anxiety and/or Their Ability to Submit Assignments: A Focus on Vision Impairment and Intellectual Disability

    Science.gov (United States)

    Datta, Poulomee; Talukdar, Joy

    2017-01-01

    This study investigated the influence of the support services on the test anxiety of students and/or their ability to submit assignments in each of the two disability groups, those with vision impairment and those with intellectual disability, who were placed in specialist and mainstream educational settings in South Australia. Interviews were…

  16. Practice leadership and active support in residential services for people with intellectual disabilities: an exploratory study.

    Science.gov (United States)

    Beadle-Brown, J; Mansell, J; Ashman, B; Ockenden, J; Iles, R; Whelton, B

    2014-09-01

    We hypothesised that a key factor determining the quality of active support was 'practice leadership' - provided by the first-line manager to focus staff attention and develop staff skills in providing direct support to enable people with intellectual disabilities to have a good quality of life. This exploratory study focused on what levels of practice leadership were found and its role in explaining variation in active support. Relevant aspects of management, including practice leadership, were assessed by questionnaires administered to staff in residential settings alongside observational measures of active support and resident engagement in meaningful activity. Relationships between these variables were explored using regression and post hoc group comparisons. There was wide variation, with average levels of practice leadership being low, though improving over the period studied. Practice leadership had a significant impact on active support, but was fully mediated by the effect of quality of management. When the quality of management was higher better practice leadership did produce a significant difference in active support. However, higher quality of management on its own did not produce better active support. A number of limitations are acknowledged and further research is required. Practice leadership appears to be an important factor in enabling staff to provide active support but as part of generally good management. Given the rather low levels found, attention needs to be given to the training, career development and support of practice leaders and also to how to protect their time from their many other responsibilities. © 2013 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

  17. Roles of General Practitioners in the Provision of Health Care Services for People with Intellectual Disabilities: A National Census in Taiwan

    Science.gov (United States)

    Lin, Jin-Ding; Hsu, Shang-Wei; Yen, Chia-Feng; Chou, Ying-Ting; Wu, Chia-Ling; Chu, Cordia M.; Loh, Ching-Hui

    2009-01-01

    Aims: The aims of the present study were to explore the perceptions of general practitioners (GPs) in the provision of health care services for people with intellectual disabilities and to analyse GPs' priorities in the delivery of health care services to this group of people in Taiwan. Methods: The study employed a cross-sectional design and was…

  18. Life Satisfaction in Persons with Intellectual Disabilities

    Science.gov (United States)

    Lucas-Carrasco, Ramona; Salvador-Carulla, Luis

    2012-01-01

    We appraised life satisfaction using the Satisfaction with Life Scale (SWLS), and analysed its psychometric properties in persons with intellectual disability (ID). Ninety-nine persons with ID from four services in Spain participated. A battery of subjective assessments was used, including the SWLS, a Quality of Life measure (WHOQOL-BREF), and…

  19. Fruit flies and intellectual disability

    OpenAIRE

    Bolduc, François V.; Tully, Tim

    2009-01-01

    Mental retardation—known more commonly nowadays as intellectual disability—is a severe neurological condition affecting up to 3% of the general population. As a result of the analysis of familial cases and recent advances in clinical genetic testing, great strides have been made in our understanding of the genetic etiologies of mental retardation. Nonetheless, no treatment is currently clinically available to patients suffering from intellectual disability. Several animal models have been use...

  20. The impact of staff and service user gender on staff responses towards adults with intellectual disabilities who display aggressive behaviour.

    Science.gov (United States)

    Kleinberg, I; Scior, K

    2014-02-01

    The impact of staff and service user gender on responses of staff in intellectual disability (ID) services is poorly understood. The present study set out to assess the role of gender in influencing staff emotions, attributions and behavioural intentions in response to aggression displayed by adults with ID. A new scale measuring staff behavioural intentions was developed. A two × two (staff gender × service user gender) between subjects design was used to compare the responses of day and residential support staff to physical aggression by a hypothetical service user. In response to a vignette depicting a service user with ID assaulting a member of staff, 160 respondents completed measures of affective responses, causal attributions and behavioural intentions while imagining themselves as the target of the service user's assault. Female participants reported feeling more fear/anxiety, more depression/anger and less confident/relaxed than male participants. The longer staff had worked with people with ID, the more likely they were to favour safety-focused behaviours. More confident female participants were less likely to favour safety-focused behaviours, but confidence had no effect on male participants' endorsement of these behaviours. Increased confidence in both was associated with lower agreement of safety-focused behaviours in relation to the female vignette, regardless of participant gender. The more control women believed the service user had over their behaviour, the more likely they were to choose safety-focused behaviours. Punitive behaviours were favoured more in response to the male rather than the female service user. Punitive behaviours were also favoured more by more junior staff and by participants who expected feeling more depressed/angry in response to the vignettes. Both staff and service user gender influenced staff responses to aggression, yet the latter played a smaller role than expected. The role of gender in staff-service user

  1. The Use of the Performance Diagnostic Checklist-Human Services to Assess and Improve the Job Performance of Individuals with Intellectual Disabilities.

    Science.gov (United States)

    Smith, Madison; Wilder, David A

    2018-06-01

    The Performance Diagnostic Checklist-Human Services (PDC-HS) is an informant-based tool designed to identify the variables responsible for performance problems. To date, the PDC-HS has not been examined with individuals with intellectual disabilities. In the current study, two supervisors with intellectual disabilities completed the PDC-HS to assess the productivity of two supervisees with disabilities who performed a pricing task in a thrift store. The PDC-HS suggested that performance deficits were due to a lack of training; a PDC-HS-indicated intervention was effective to increase accurate pricing. • The PDC-HS is an informant-based tool designed to identify the variables responsible for employee performance problems in human service settings. • The PDC-HS can be completed by some individuals with intellectual disabilities in a supervisory position to identify the variables responsible for problematic job performance among their supervisees. • A PDC-HS indicated intervention was demonstrated to be effective to improve the job performance of individuals with disabilities. • The PDC-HS may be a useful tool to support performance improvement and job maintenance among individuals with intellectual disabilities.

  2. The barriers to and enablers of providing reasonably adjusted health services to people with intellectual disabilities in acute hospitals: evidence from a mixed-methods study.

    Science.gov (United States)

    Tuffrey-Wijne, Irene; Goulding, Lucy; Giatras, Nikoletta; Abraham, Elisabeth; Gillard, Steve; White, Sarah; Edwards, Christine; Hollins, Sheila

    2014-04-16

    To identify the factors that promote and compromise the implementation of reasonably adjusted healthcare services for patients with intellectual disabilities in acute National Health Service (NHS) hospitals. A mixed-methods study involving interviews, questionnaires and participant observation (July 2011-March 2013). Six acute NHS hospital trusts in England. Reasonable adjustments for people with intellectual disabilities were identified through the literature. Data were collected on implementation and staff understanding of these adjustments. Data collected included staff questionnaires (n=990), staff interviews (n=68), interviews with adults with intellectual disabilities (n=33), questionnaires (n=88) and interviews (n=37) with carers of patients with intellectual disabilities, and expert panel discussions (n=42). Hospital strategies that supported implementation of reasonable adjustments did not reliably translate into consistent provision of such adjustments. Good practice often depended on the knowledge, understanding and flexibility of individual staff and teams, leading to the delivery of reasonable adjustments being haphazard throughout the organisation. Major barriers included: lack of effective systems for identifying and flagging patients with intellectual disabilities, lack of staff understanding of the reasonable adjustments that may be needed, lack of clear lines of responsibility and accountability for implementing reasonable adjustments, and lack of allocation of additional funding and resources. Key enablers were the Intellectual Disability Liaison Nurse and the ward manager. The evidence suggests that ward culture, staff attitudes and staff knowledge are crucial in ensuring that hospital services are accessible to vulnerable patients. The authors suggest that flagging the need for specific reasonable adjustments, rather than the vulnerable condition itself, may address some of the barriers. Further research is recommended that describes and

  3. Mood disorders in intellectual disability.

    Science.gov (United States)

    Hurley, Anne D

    2006-09-01

    This article examines reviews and research on the diagnosis and treatment of mood disorders in people with intellectual disability published from September 2004 to December 2005. Patients with intellectual disability have limitations in verbal ability, and with increasing levels of disability may have an atypical clinical presentation. Thus, methods to diagnose mood disorders were a major research focus. Informant-rating scales and two self-report instruments provided data on thought patterns, aberrant behavior, appetite, and suicidality. Behavioral symptoms such as aggression were frequently associated with mood disorders. Pharmacotherapy and electroconvulsive therapy were found to be effective treatments. Mood disorders were frequently identified in people with intellectual disability, although suicide was still quite rare. Patients with milder levels of disability can use self-report measures and can be diagnosed using standard criteria with little modification. For those with more severe disability, diagnosis is challenging and often requires the use of residual categories. Atypical clinical presentation, including maladaptive behaviors, lent support for 'behavioral equivalent' substitutes of standard criteria. Typical pharmacological agents were effective for depression and electroconvulsive therapy for treatment-resistant bipolar disorder.

  4. Psychopathology in Young People With Intellectual Disability

    Science.gov (United States)

    Einfeld, Stewart L.; Piccinin, Andrea M.; Mackinnon, Andrew; Hofer, Scott M.; Taffe, John; Gray, Kylie M.; Bontempo, Daniel E.; Hoffman, Lesa R.; Parmenter, Trevor; Tonge, Bruce J.

    2008-01-01

    Context Comorbid severe mental health problems complicating intellectual disability are a common and costly public health problem. Although these problems are known to begin in early childhood, little is known of how they evolve over time or whether they continue into adulthood. Objective To study the course of psychopathology in a representative population of children and adolescents with intellectual disability. Design, Setting, and Participants The participants of the Australian Child to Adult Development Study, an epidemiological cohort of 578 children and adolescents recruited in 1991 from health, education, and family agencies that provided services to children with intellectual disability aged 5 to 19.5 years in 6 rural and urban census regions in Australia, were followed up for 14 years with 4 time waves of data collection. Data were obtained from 507 participants, with 84% of wave 1 (1991-1992) participants being followed up at wave 4 (2002-2003). Main Outcome Measures The Developmental Behaviour Checklist (DBC), a validated measure of psychopathology in young people with intellectual disability, completed by parents or other caregivers. Changes over time in the Total Behaviour Problem Score and 5 subscale scores of the DBC scores were modeled using growth curve analysis. Results High initial levels of behavioral and emotional disturbance decreased only slowly over time, remaining high into young adulthood, declining by 1.05 per year on the DBC Total Behaviour Problem Score. Overall severity of psychopathology was similar across mild to severe ranges of intellectual disability (with mean Total Behaviour Problem Scores of approximately 44). Psychopathology decreased more in boys than girls over time (boys starting with scores 2.61 points higher at baseline and ending with scores 2.57 points lower at wave 4), and more so in participants with mild intellectual disability compared with those with severe or profound intellectual disability who diverged from

  5. Cohort profile: a data linkage cohort to examine health service profiles of people with intellectual disability in New South Wales, Australia.

    Science.gov (United States)

    Reppermund, Simone; Srasuebkul, Preeyaporn; Heintze, Theresa; Reeve, Rebecca; Dean, Kimberlie; Emerson, Eric; Coyne, David; Snoyman, Phillip; Baldry, Eileen; Dowse, Leanne; Szanto, Tracey; Sara, Grant; Florio, Tony; Trollor, Julian N

    2017-04-12

    People with intellectual disability are a minority group who experience poorer physical and mental health than the general population and have difficulty accessing healthcare services. There is lack of knowledge about healthcare service needs and gaps experienced by people with intellectual disability. This study aims to interrogate a large linked administrative data set containing hospital admissions, presentations to emergency departments (ED) and mortality data to provide evidence to inform the development of improved health and mental health services for this population. A retrospective cohort of people with intellectual disability (n=51 452) from New South Wales (NSW), Australia, to explore health and mental health profiles, mortality, pattern of health service use and associated costs between 2005 and 2013. The cohort is drawn from: the Disability Services Minimum Data Set; Admitted Patients Data Collection; Emergency Department Data Collection, Australian Bureau of Statistics Death Registry and Registry of Births, Deaths and Marriages. Mental health service usage among those with intellectual disability will be compared to a cohort of people who used mental health services (n=1 073 139) and service usage other than for mental health will be compared with published data from the general population. The median age of the cohort was 24 at the time of the last hospital admission and 21 at the last ED presentation. The cohort has a higher proportion of men than women and accounts for 0.6% of the NSW population in 2011. Over 70% had up to 5 ED presentations and hospitalisations between 2005 and 2012. A high proportion of people with intellectual disability live in the most disadvantaged neighbourhoods. Results will be used to inform the development of more responsive healthcare, including improved interactions between health, social and disability supports. More generally, the results will assist the development of more inclusive policy frameworks for people

  6. Good Enough Support? Exploring the Attitudes, Knowledge and Experiences of Practitioners in Social Services and Child Welfare Working with Mothers with Intellectual Disability

    Science.gov (United States)

    Strnadová, Iva; Bernoldová, Jana; Adamcíková, Zdenka; Klusácek, Jan

    2017-01-01

    Background: This study examined the attitudes, knowledge and experiences of practitioners in social services and child welfare working with mothers with intellectual disability. Method: The authors used a national survey, which was completed by 329 participants. Descriptive statistics and frequency tables were generated, and the associations…

  7. Meeting the support needs of persons with mild intellectual disability or borderline intellectual functioning: still a long way to go.

    Science.gov (United States)

    Nouwens, P J G; Smulders, N B M; Embregts, P J C M; van Nieuwenhuizen, C

    2017-12-01

    Among persons with a mild intellectual disability or borderline intellectual functioning, differences in their characteristics imply that a differentiated approach is required to meet their needs. This retrospective study examined whether the history of support/treatment programs and the type of healthcare providers involved matched the specific support needs of persons with a mild intellectual disability or borderline intellectual functioning. Five (previously identified) profiles of persons with a mild intellectual disability or borderline intellectual functioning were used to investigate to what extent the support needs of this group had been met. For the 250 persons with mild intellectual disability or borderline intellectual functioning who matched these five profiles, data were collected retrospectively from their case files. Persons with mild intellectual disability or borderline intellectual functioning received a very similar amount and type of support/treatment programs. Differences between the profiles were found for non-verbal therapy, residential treatment and contacts with social work. Regarding the type of healthcare providers involved, differences between the profiles emerged for specialised intellectual disability services, youth services and specialised addiction services. The support programs for a heterogeneous population of persons with mild intellectual disability or borderline intellectual functioning seem to be suboptimal, indicating that more differentiation is required in the services offered to these individuals. © 2017 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

  8. The complex role of social care services in supporting the development of sustainable identities: Insights from the experiences of British South Asian women with intellectual disabilities.

    Science.gov (United States)

    Malik, Kulsoom Jawaid; Unwin, Gemma; Larkin, Michael; Kroese, Biza Stenfert; Rose, John

    2017-04-01

    Carers and service users with intellectual disabilities from minority ethnic groups have typically been reported to be dissatisfied with the social care services they receive. However, service users themselves have rarely been asked directly about their experiences of social care. This paper aims to understand the meaning of social care services in the lives of South Asian women with intellectual disabilities, in the United Kingdom. 10 British South Asian women with mild-moderate intellectual disabilities were interviewed about their experiences of social care services. The transcripts were analysed using interpretative phenomenological analysis. The analysis produced three super-ordinate themes, which focus on how services facilitate the development of complex identities, how the participants explored their sense of being 'stuck' between cultures as they negotiated their journeys towards independence, and the triple disadvantage which they experienced as a consequence of the intersection between gender, ethnicity and disability. The participants were broadly satisfied with the role which services played in these domains, and appeared to find them valuable and helpful. The results suggest that the participants successfully managed complex identity issues, such as acculturation processes, with the support of services. It may be helpful to give more explicit consideration to the positive role which good services can play in supporting people with intellectual disabilities in the development of their identities and goals, alongside the more traditionally 'concrete' objectives of such social care. Engagement with families in 'positive risk-taking' is likely to be an important component of success. Copyright © 2017 Elsevier Ltd. All rights reserved.

  9. Adolescents with intellectual disability and suicidal behavior.

    Science.gov (United States)

    Merrick, Joav; Merrick, Efrat; Morad, Mohammed; Kandel, Isack

    2005-09-08

    It has been assumed that impaired intellectual capacity could act as a buffer to suicidality in the population of children and adolescents with intellectual disability. The few studies that have been conducted contest this assumption and in fact the findings showed that the characteristics of suicidality in the population of children and adolescents with intellectual disability are very similar to other adolescents without intellectual disability. This paper reviews the few studies conducted and describe the symptomatology in this population.

  10. Adolescents with Intellectual Disability and Suicidal Behavior

    Directory of Open Access Journals (Sweden)

    Joav Merrick

    2005-01-01

    Full Text Available It has been assumed that impaired intellectual capacity could act as a buffer to suicidality in the population of children and adolescents with intellectual disability. The few studies that have been conducted contest this assumption, and in fact, the findings showed that the characteristics of suicidality in the population of children and adolescents with intellectual disability are very similar to other adolescents without intellectual disability. This paper reviews the few studies conducted and describe the symptomatology in this population.

  11. 78 FR 12219 - Excepted Service-Appointment of Persons With Intellectual Disabilities, Severe Physical...

    Science.gov (United States)

    2013-02-22

    ...;Prices of new books are listed in the first FEDERAL REGISTER issue of each #0;week. #0; #0; #0; #0;#0... appointment of people with mental retardation, severe physical disabilities, and psychiatric disabilities. As... a particular work environment. Persons with disabilities today, however, often have work...

  12. Difficulties in conducting a randomized controlled trial of health service interventions in intellectual disability: implications for evidence-based practice.

    Science.gov (United States)

    Oliver, P C; Piachaud, J; Done, J; Regan, A; Cooray, S; Tyrer, P

    2002-05-01

    In an era of evidence-based medicine, practice is constantly monitored for quality in accordance with the needs of clinical governance (Oyebode et al. 1999). This is likely to lead to a dramatic change in the treatment of those with intellectual disability (ID), in which evidence for effective intervention is limited for much that happens in ordinary practice. As Fraser (2000, p. 10) has commented, the word that best explains "the transformation of learning disability practice in the past 30 years is 'enlightenment'." This is not enough to satisfy the demands of evidence, and Fraser exhorted us to embrace more research-based practice in a subject that has previously escaped randomized controlled trials (RCTs) of treatment because of ethical concerns over capacity and consent, which constitute a denial of opportunity which "is now at last regarded as disenfranchising". The present paper describes the difficulties encountered in setting up a RCT of a common intervention, i.e. assertive community treatment, and concludes that a fundamental change in attitudes to health service research in ID is needed if proper evaluation is to prosper.

  13. Age at Death in Individuals with Intellectual Disabilities.

    Science.gov (United States)

    Arvio, Maria; Salokivi, Tommi; Bjelogrlic-Laakso, Nina

    2017-07-01

    We aimed to ascertain the average age at death (AD) in the intellectual disability population for each gender and compare them to those of the general population during 1970-2012. By analysing medical records, we calculated the ADs of all deceased clients (N = 1236) of two district organizations responsible for intellectual disability services. Statistics Finland's database generated data regarding ADs of all inhabitants who had died after having resided in same district. During the follow-up, average ADs for the intellectual disability population and general population increased, and simultaneously the AD difference between these populations decreased. In the 2000s, the AD difference between the intellectual disability population and the whole population was 22 years for men (95% CI: -24 to -20) and 30 years for women (95% CI: -33 to -27). In 2000s, the mean AD of those with mild-to-moderate intellectual disability (IQ 50-69) for women and men was 56 (SD17) and 54 (SD18), and those with severe to profound intellectual disability (IQ<50), 44 (SD23) and 43 (SD21). Intellectual disability is still a considerable risk factor for early death. Among the intellectual disability population, unlike in general population, the lifespans of women and men are equal. © 2016 John Wiley & Sons Ltd.

  14. Fruit flies and intellectual disability.

    Science.gov (United States)

    Bolduc, François V; Tully, Tim

    2009-01-01

    Mental retardation--known more commonly nowadays as intellectual disability--is a severe neurological condition affecting up to 3% of the general population. As a result of the analysis of familial cases and recent advances in clinical genetic testing, great strides have been made in our understanding of the genetic etiologies of mental retardation. Nonetheless, no treatment is currently clinically available to patients suffering from intellectual disability. Several animal models have been used in the study of memory and cognition. Established paradigms in Drosophila have recently captured cognitive defects in fly mutants for orthologs of genes involved in human intellectual disability. We review here three protocols designed to understand the molecular genetic basis of learning and memory in Drosophila and the genes identified so far with relation to mental retardation. In addition, we explore the mental retardation genes for which evidence of neuronal dysfunction other than memory has been established in Drosophila. Finally, we summarize the findings in Drosophila for mental retardation genes for which no neuronal information is yet available. All in all, this review illustrates the impressive overlap between genes identified in human mental retardation and genes involved in physiological learning and memory.

  15. “Ooh, where did that come from?”: celebrating systemic practice in services for adults with intellectual disability

    OpenAIRE

    Haydon-Laurelut, Mark

    2008-01-01

    What and whom we choose to celebrate says a lot about us. As I thought about celebrating systemic practice, I wondered about how and when those with whom I most often practice, men and women with intellectual disabilities, have been celebrated?

  16. Health Gain through Screening--Coronary Heart Disease and Stroke: Developing Primary Health Care Services for People with Intellectual Disability.

    Science.gov (United States)

    Wells, M. B.; Turner, S.; Martin, D. M.; Roy, A.

    1997-01-01

    A study of 120 British adults with intellectual disability found they had higher risk factors of developing coronary heart disease and stroke than the general population. There was a greater incidence of obesity and considerably lower physical activity levels than the general population. Several also had abnormal cholesterol readings. (CR)

  17. Communicating about Death and Dying: Developing Training for Staff Working in Services for People with Intellectual Disabilities

    Science.gov (United States)

    Tuffrey-Wijne, Irene; Rose, Tracey; Grant, Robert; Wijne, Astrid

    2017-01-01

    Background: Many people with intellectual disabilities are affected by death, yet conversations about death are often avoided by staff working with them. This study aimed to assess staff training needs and to develop, trial and evaluate a training course on communicating about death and dying. Method:(i) Semi-structured interviews with 20 staff in…

  18. Family Caregivers of Adults with Intellectual and Developmental Disabilities: Outcomes Associated with U.S. Services and Supports

    Science.gov (United States)

    Williamson, Heather J.; Perkins, Elizabeth A.

    2014-01-01

    Individuals with intellectual and developmental disabilities (IDD) in the U.S. predominantly live with their family caregivers. As care delivery and support systems vary widely globally, consideration of caregiver outcomes specifically in the U.S. context is needed. A systematic literature review was conducted to identify U.S. family caregiver…

  19. Supporting People with an Intellectual Disability and Mental Health Problems: A Scoping Review of What They Say about Service Provision

    Science.gov (United States)

    Venville, Annie; Sawyer, Anne-Maree; Long, Maureen; Edwards, Niki; Hair, Sara

    2015-01-01

    This article reports on the findings of a scoping review of peer-reviewed research that investigates the formal support experiences of adults with an intellectual disability and mental health problems. Seven databases and 21 sources of grey literature were searched and 17 articles were retained for review, demonstrating the dearth of literature in…

  20. "With a Touch of a Button": Staff perceptions on integrating technology in an Irish service provider for people with intellectual disabilities.

    Science.gov (United States)

    Clifford Simplican, Stacy; Shivers, Carolyn; Chen, June; Leader, Geraldine

    2018-01-01

    People with intellectual disabilities continue to underutilize technology, in part due to insufficient training. Because support staff professionals provide instructional support, how they perceive integrating new technologies is important for people with intellectual disabilities. The authors conducted a sequential mixed-methods exploratory study (quan→QUAL) including quantitative data from online surveys completed by 46 staff members and qualitative data from five focus groups attended by 39 staff members. Quantitative results show strong support for diverse technologies. In contrast, qualitative results suggest that staff members' support of technology decreases when they perceive that technology may jeopardize service users' safety or independence. Although staff members identified increasing independence as the main reason to use new technologies with service users, they also worried that technologies used to increase the social inclusion of service users may pose undue risk and thus may limit their embrace of technology. © 2017 John Wiley & Sons Ltd.

  1. An inexorable rise in intellectual disability?

    OpenAIRE

    Michiel Ras; Isolde Woittiez; Hetty van Kempen; Klarita Sadiraj

    2010-01-01

    Original title: Steeds meer verstandelijk gehandicapten? Demand for intellectual disability care has grown strongly in the Netherlands in recent years. Partly at the request of the Dutch Ministry of Health, Welfare and Sport, the Netherlands Institute for Social Research/SCP measured the number of people with intellectual disabilities applying for care. The results are contained in this report. Our inventory reveals that demand for intellectual disability care has risen by an average of 9% pe...

  2. Transition and Students with Mild Intellectual Disability: Findings From the National Longitudinal Transition Study-2

    Science.gov (United States)

    Bouck, Emily C.; Joshi, Gauri S.

    2016-01-01

    Students with intellectual disability historically struggle with post-school outcomes. However, much of the research on students with intellectual disability relative to post-school outcomes and transition services is aggregated for students with mild, moderate, and severe intellectual disability. This secondary analysis of the National…

  3. Gender Differences in Psychiatric Diagnoses among Inpatients with and without Intellectual Disabilities

    Science.gov (United States)

    Lunsky, Yona; Bradley, Elspeth A.; Gracey, Carolyn D.; Durbin, Janet; Koegl, Chris

    2009-01-01

    There are few published studies on the relationship between gender and psychiatric disorders in individuals with intellectual disabilities. Adults (N = 1,971) with and without intellectual disabilities who received inpatient services for psychiatric diagnosis and clinical issues were examined. Among individuals with intellectual disabilities,…

  4. "It's not everyday that parents get a chance to talk like this": Exploring parents' perceptions and expectations of speech-language pathology services for children with intellectual disability.

    Science.gov (United States)

    Carroll, Clare

    2010-08-01

    Tailoring the delivery of disability services to the preferences and requirements of service users allows for more effective partnerships. The aim of this research was to explore parents' perceptions and the expectations of their child's speech-language pathology (SLP) within an intellectual disability service. Parents of school-aged children with intellectual disability who received a SLP service in Ireland participated in the research: 17 parents participated in focus groups and 103 parents answered questionnaires. The core themes from the focus groups, which subsequently informed the questionnaire design, were: experience of the SLP service, communication difficulties, expectations of the SLP service, and future developments. The key questionnaire results indicated that parents viewed their SLP as the "expert" and viewed school-based and clinic-based services differently. Parents were more likely to believe that their child would always need therapy if they received a school-based service. Whereas, parents were more likely to think that their child's speech was improving as they got older and were more likely to be aware of therapy activities if therapy was clinic-based. The findings have implications for the delivery of SLP services suggesting that clarification of parents' roles and expectations are required.

  5. Sexuality and Intellectual Disability.

    Science.gov (United States)

    Wenger, Jodi; Downes, Alison; Blum, Nathan; Augustyn, Marilyn

    Amad is a wonderful 16-year-old young man from Syria who has recently relocated to the United States from his war-torn native country. In his last few years in Syria, he was primarily at home with his mother, and they sought refuge with a maternal aunt in the United States seeking asylum and treatment of Amad's disability.At 8 years of age, he had intelligence testing in the United Arab Emirates, which showed a verbal intelligence score on the Wechsler intelligence scale for children (WISC) of 68 and a performance of 64. His working memory was 67 and his processing speed was 65. On arrival in the United States, his achievement was roughly at a third-grade level in Arabic. In the year and a half that he has been in the United States, he quickly improved his English skills, which he learned as a toddler. His father remains in Syria unable to safely immigrate and his mother is raising him alone in the United States with the help of her sister.They come to you for an urgent care visit because Amad recently was accused of sexual harassment by two girls at his high school. He is in a substantially separate program but is included for lunch and technology. While in the computer laboratory, he repeatedly approached the girls and asks them to "date" him, and on 1 occasion sat behind 1 girl and repeatedly reached out to stroke her long blonde hair.His mother is distraught because she recently found out that Amad also has a Facebook page and had been attempting to contact the same two girls on social media. The girls' parents recently threatened to file criminal harassment charges and Amad's mother comes to you asking for help with making Amad stop this activity. What would you do next?

  6. Identifying the key concerns of Irish persons with intellectual disability.

    Science.gov (United States)

    García Iriarte, Edurne; O'Brien, Patricia; McConkey, Roy; Wolfe, Marie; O'Doherty, Siobhain

    2014-11-01

    Internationally, people with intellectual disability are socially marginalized, and their rights under the United Nations Convention for the Rights of Persons with Disabilities (CRPD) are often ignored. This paper aims to define the key concerns of adults with an intellectual disability in relation to their participation in society using an inclusive research strategy for both data gathering and data analysis. A national study involving 23 focus groups and 168 persons was conducted on the island of Ireland with people with intellectual disability as co-facilitators. A thematic content analysis was undertaken of the verbatim transcripts initially by university co-researchers, and 19 themes were identified. Co-researchers with intellectual disability joined in identifying the eight core themes. These were as follows: living options, employment, relationships, citizenship, leisure time, money management, self-advocacy, and communication. The concerns are discussed within the framework of the CRPD, and implications for transforming service policy are drawn. Why we did the research In many countries, people with intellectual disability have difficulties doing things other people without disabilities do, for example to study, to get a job or to live independently. They also find that their rights are not respected under the Convention on the Rights of Persons with Disabilities (the Convention). We did this study to Learn what are the main issues for adults with intellectual disability in Ireland. Do research with people with intellectual disability. How we did the research People with intellectual disability and their supporters worked with university researchers to plan and do the research. We met with people in groups and 168 people told us about things important to them. What we found out We found that there were very important things that people talked about in the groups. We chose the most important: living options, employment, relationships, rights, leisure, money

  7. The Role of Learning Disability Nurses in Promoting Cervical Screening Uptake in Women with Intellectual Disabilities: A Qualitative Study

    Science.gov (United States)

    Lloyd, Jennifer L.; Coulson, Neil S.

    2014-01-01

    Research suggests that the uptake of cervical screening by women with intellectual disabilities (commonly known as learning disabilities within UK policy frameworks, practice areas and health services) is poor compared to women without intellectual disabilities. The present study explored learning disability nurses' experiences of supporting women…

  8. Genetics Home Reference: X-linked intellectual disability, Siderius type

    Science.gov (United States)

    ... Cleft Lip and Palate MalaCards: x-linked intellectual disability, siderius type March of Dimes: Cleft Lip and Cleft Palate Merck Manual Consumer Version: Intellectual Disability Orphanet: X-linked intellectual disability, Siderius type Patient ...

  9. Investigating the factors that affect the communication of death-related bad news to people with intellectual disabilities by staff in residential and supported living services: An interview study.

    Science.gov (United States)

    Tuffrey-Wijne, I; Rose, T

    2017-08-01

    Most staff working in intellectual disability services will be confronted with people with intellectual disabilities who need support around death, dying and bereavement. Previous studies suggest that intellectual disability staff tend to protect clients from knowing about death and avoid communication about death. The aims of this study were to gain further insight into the individual, organisational and contextual factors that affect the communication of death-related bad news to people with intellectual disabilities by intellectual disability staff and to develop guidelines for services to enable appropriate communication with clients about death and dying. Semi-structured interviews were held with 20 social care staff working in intellectual disability residential or supported living services in London, who had supported a client affected by death-related bad news in the past 6 months. Staff found supporting people with intellectual disabilities around death and dying extremely difficult and tended to avoid communication about death. The following factors had a particularly strong influence on staff practice around communicating death-related bad news: fear and distress around death; life and work experience; and organisational culture. Staff attitudes to death communication had a stronger influence than their client's level of cognitive or communicative abilities. Managers were important role models. Service managers should ensure not only that all their staff receive training in death, loss and communication but also that staff are enabled to reflect on their practice, through emotional support, supervision and team discussions. Future work should focus on the development and testing of strategies to enable intellectual disability staff to support their clients in the areas of dying, death and bereavement. © 2017 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

  10. Expanding Opportunities for Students with Intellectual Disability

    Science.gov (United States)

    Giangreco, Michael F.

    2017-01-01

    Research and experience tell us a great deal about how to successfully educate students with intellectual disability, but unfortunately this knowledge remains underutilized and inconsistently applied, writes researcher Michael F. Giangreco. Students with intellectual disability who have virtually identical profiles but live in different locales…

  11. Business Modelling for ICT based services targeted to Intellectually Disabled People

    OpenAIRE

    Peethambaran, Anoja

    2011-01-01

    Services are becoming a key focus in the current era. Organizations globally are facing rapid changes in providing services. Despite this alarming growth, the advancement in Information and Communications Technology (ICT) has created so many opportunities but considerable challenges for the service industry. Information and Communication Technologies (ICT) have become part of everyday life in recent years. ICT can provide dignity and well-being to people through self-facilitation. ICT lik...

  12. Staffs' documentation of participation for adults with profound intellectual disability or profound intellectual and multiple disabilities.

    Science.gov (United States)

    Talman, Lena; Gustafsson, Christine; Stier, Jonas; Wilder, Jenny

    2017-06-21

    This study investigated what areas of International Classification of Functioning, Disability and Health were documented in implementation plans for adults with profound intellectual disability or profound intellectual and multiple disabilities with focus on participation. A document analysis of 17 implementation plans was performed and International Classification of Functioning, Disability and Health was used as an analytic tool. One hundred and sixty-three different codes were identified, especially in the components Activities and participation and Environmental factors. Participation was most frequently coded in the chapters Community, social and civic life and Self-care. Overall, the results showed that focus in the implementation plans concerned Self-care and Community, social and civic life. The other life areas in Activities and participation were seldom, or not at all, documented. A deeper focus on participation in the implementation plans and all life areas in the component Activities and participation is needed. It is important that the documentation clearly shows what the adult wants, wishes, and likes in everyday life. It is also important to ensure that the job description for staff contains both life areas and individual preferences so that staff have the possibility to work to fulfill social and individual participation for the target group. Implications for rehabilitation There is a need for functioning working models to increase participation significantly for adults with profound intellectual disability or profound intellectual and multiple disabilities. For these adults, participation is achieved through the assistance of others and support and services carried out must be documented in an implementation plan. The International Classification of Functioning, Disability and Health can be used to support staff and ensure that information about the most important factors in an individual's functioning in their environment is not omitted in

  13. Exploring the boundary of a specialist service for adults with intellectual disabilities using a Delphi study: a quantification of stakeholder participation.

    Science.gov (United States)

    Hempe, Eva-Maria; Morrison, Cecily; Holland, Anthony

    2015-10-01

    There are arguments that a specialist service for adults with intellectual disabilities is needed to address the health inequalities that this group experiences. The boundary of such a specialist service however is unclear, and definition is difficult, given the varying experiences of the multiple stakeholder groups. The study reported here quantitatively investigates divergence in stakeholders' views of what constitutes a good specialist service for people with intellectual disabilities. It is the first step of a larger project that aims to investigate the purpose, function and design of such a specialist service. The results are intended to support policy and service development. A Delphi study was carried out to elicit the requirements of this new specialist service from stakeholder groups. It consisted of three panels (carers, frontline health professionals, researchers and policymakers) and had three rounds. The quantification of stakeholder participation covers the number of unique ideas per panel, the value of these ideas as determined by the other panels and the level of agreement within and between panels. There is some overlap of ideas about of what should constitute this specialist service, but both carers and frontline health professionals contributed unique ideas. Many of these were valued by the researchers and policymakers. Interestingly, carers generated more ideas regarding how to deliver services than what services to deliver. Regarding whether ideas are considered appropriate, the variation both within and between groups is small. On the other hand, the feasibility of solutions is much more contested, with large variations among carers. This study provides a quantified representation of the diversity of ideas among stakeholder groups regarding where the boundary of a specialist service for adults with learning disabilities should sit. The results can be used as a starting point for the design process. The study also offers one way to measure the

  14. Participation and Service Access Rights for People with Intellectual Disability: A Role for Law?

    Science.gov (United States)

    Carney, Terry

    2013-01-01

    Background: Supported decision-making and personal budgets for services are the new paradigms. Method: Supported decision-making proposals from the Australian State of Victoria are analysed against international trends to determine the viability of laws reflecting new international norms of the United Nations Convention on the Rights of Persons…

  15. STRUCTURE AND VALIDATION OF A CONTEXTUAL QUALITY OF LIFE SCALE FOR PEOPLE WITH INTELLECTUAL DISABILITIES IN SOCIAL SERVICES: AN ORGANIZATION-ORIENTED MEASURE FROM AN EXTERNAL PERSPECTIVE

    Directory of Open Access Journals (Sweden)

    Carolina Moliner

    2013-09-01

    Full Text Available The aim of this study is to develop and validate a scale on the Quality of Life (QoL of people with intellectual disabilities as assessed by family members (external perspective. The instrument measures improvement in QoL due to actions by organizations delivering services to individuals with intellectual disabilities (organization-oriented measure. In order to design the items for the scale, focus groups were set up with professionals dedicated to attending to individuals with intellectual disabilities. An initial scale of 20 items was constructed by consensus. A total of 1195 family members answered the questionnaire. In order to assess the structure of the scale, EFA recommended deleting 3 overlapping items. The final scale consisted of 17 items (α=95 and was composed of four main dimensions: self-determination (SD, social inclusion (SI, rights (RI and overall improvement (OI, which explained 74.83% of the variance. Finally, the consistency and validity were assessed. Convergent validity and discriminant validity were satisfactory. Moreover, CFA confirmed the structure of the scale. Main conclusions, limitations and practical implications are discussed.

  16. Children with intellectual disability and hospice utilization.

    Science.gov (United States)

    Lindley, Lisa C; Colman, Mari Beth; Meadows, John T

    2017-02-01

    Over 42,000 children die each year in the United States, including those with intellectual disability (ID). Survival is often reduced when children with intellectual disability also suffer from significant motor dysfunction, progressive congenital conditions, and comorbidities. Yet, little is known about hospice care for children with intellectual disability. The purpose of this study was to explore the relationship between intellectual disability and hospice utilization. Additionally, we explored whether intellectual disability combined with motor dysfunction, progressive congenital conditions, and comorbidities influenced pediatric hospice utilization. Using a retrospective cohort design and data from the 2009 to 2010 California Medicaid claims files, we conducted a multivariate analysis of hospice utilization. This study shows that intellectual disability was negatively related to hospice enrollment and length of stay. We also found that when children had both intellectual disability and comorbidities, there was a positive association with enrolling in hospice care. A number of clinical implications can be drawn from the study findings that hospice and palliative care nurses use to improve their clinical practice of caring for children with ID and their families at end of life.

  17. Sexual health for people with intellectual disability.

    Science.gov (United States)

    Eastgate, Gillian

    2008-01-01

    People with intellectual disability experience the same range of sexual needs and desires as other people. However, they experience many difficulties meeting their needs. They may be discouraged from relieving sexual tension by masturbating. They face a high risk of sexual abuse. They are likely not to be offered the full range of choices for contraception and sexual health screening. Poor education and social isolation may increase their risk of committing sexual offences. However, with appropriate education and good social support, people with intellectual disability are capable of safe, constructive sexual expression and healthy relationships. Providing such support is an essential part of supporting people with intellectual disability.

  18. Stories of People Who Have Attended a Lesbian, Gay, Bisexual and Trans Support Group in a Secure Intellectual Disability Service.

    Science.gov (United States)

    Tallentire, Liz; Smith, Matthew; David, Lee; Roberts, Adam; Bruce; Morrow, Sarah; Withers, Paul; Smith, Ian

    2016-08-31

    This research is about people who have intellectual disabilities and live in a secure hospital. It is about a group of people who meet at a support group. The support group is for people who are lesbian, gay, bisexual or transgender. These people with intellectual disabilities helped with planning, doing, and telling other people about the research. They told their stories about going to the support group. Their stories were joined together into a group story. The story said that the group helped people in lots of different ways. For some people going to the group was difficult at first because it was ?coming out'. This means telling other people you are lesbian, gay, bisexual, or transgender. Then it got easier and people started to feel better about themselves. Then they wanted to help others and this was important in their lives. This group seemed to help people get better. We have given some ideas for setting up other groups and doing more research. © 2016 John Wiley & Sons Ltd.

  19. Chronic Neglect and Services without Borders: A Guiding Model for Social Service Enhancement to Address the Needs of Parents with Intellectual Disabilities

    Science.gov (United States)

    Azar, Sandra T.; Robinson, Lara R.; Proctor, Stephon N.

    2012-01-01

    Child neglect has negative effects throughout the life span. Although an argument for a link between intellectual disabilities and neglectful parenting can be made, this article argues for a more fine-grained view of the cognitive problems that underlie child neglect perpetration and provides evidence for a social information processing model of…

  20. Mortality in People with Intellectual Disabilities

    Science.gov (United States)

    Heslop, Pauline; Lauer, Emily; Hoghton, Matt

    2015-01-01

    This paper reviews why an understanding of mortality data in general, and in relation to people with intellectual disabilities in particular, is an important area of concern, and introduces the papers in this Special Edition.

  1. Cancer Screening in Women with Intellectual Disabilities: An Irish perspective

    Science.gov (United States)

    Reidy, Mary; Denieffe, Suzanne; Foran, Sinéad

    2014-01-01

    In the Republic of Ireland, more than 8000 women with intellectual disabilities (IDs), aged 20 years and over, are registered for service provision. Their health needs challenge preventative health services including breast and cervical cancer screening programmes. This review explores the literature about cancer screening participation rates and…

  2. Transition for Teenagers with Intellectual Disability: Carers' Perspectives

    Science.gov (United States)

    Bhaumik, Sabyasachi; Watson, Joanna; Barrett, Mary; Raju, Bala; Burton, Tracey; Forte, Jane

    2011-01-01

    Teenagers with intellectual disabilities (ID) have significantly more health problems than the rest of the population and many encounter difficulties accessing the services they need during the transition from children's to adult services. A multidisciplinary, interagency study was carried out in one area of the UK with the intent to estimate the…

  3. 228 THE INTELLECTUAL DISABLED (MENTALLY IMPAIRED) IN ...

    African Journals Online (AJOL)

    Elizabeth

    The Intellectual disabled child is characterized by significantly sub average general intellectual ... by abnormal development, learning difficulties, and problem in social ... softened and classifications redefined some what to mild (IQ of 55 –70) moderate .... parents do not like the isolation of their children from normal children.

  4. Model of Intellectual Disability and the Relationship of Attitudes Towards the Sexuality of Persons with an Intellectual Disability.

    Science.gov (United States)

    Parchomiuk, Monika

    2013-06-01

    The following article discusses the relationship between the model of intellectual disability and the attitudes towards sexuality of people with disabilities. This correlation has been verified during the author's own research conducted on students of several medical faculties such as nursing, public health, emergency medical services and physiotherapy. Tools of the author's design have been used in the research. Likert-type scale "Perspective of intellectual disability" has been used to determine the model of disability seen from the medical (individual) or social perspective. To examine the attitudes towards sexuality two tools of the author's own design have been used: a Likert-type scale "The essence of sexuality in persons with an intellectual disability" which has been used to analyze the cognitive aspect of the attitudes, and a semantic differential with notions concerning physical and psychosocial aspects of sexuality including the affective-evaluative aspect. As expected, significant correlations have been found between the model and the attitudes both in the cognitive and the affective-evaluative aspect. Higher scores for the individual model correlated with: (a) lover scores for most aspects of sexuality of people with intellectual disability, (b) perceiving them as asexual, (c) biological determinism in the sexual sphere. The social model concurred with positive values given to sexuality of people with intellectual disability and its normalization in the sphere of its determinants and symptoms.

  5. Feasibility of Eight Physical Fitness Tests in 1,050 Older Adults with Intellectual Disability: Results of the Healthy Ageing with Intellectual Disabilities Study

    Science.gov (United States)

    Hilgenkamp, Thessa I. M.; van Wijck, Ruud; Evenhuis, Heleen M.

    2013-01-01

    Although physical fitness is relevant for well-being and health, knowledge on the feasibility of instruments to measure physical fitness in older adults with intellectual disability (ID) is lacking. As part of the study Healthy Ageing with Intellectual Disabilities with 1,050 older clients with ID in three Dutch care services, the feasibility of 8…

  6. [Psychiatric disorders and neurological comorbidity in children with intellectual disability].

    Science.gov (United States)

    Wriedt, Elke; Wiberg, Anja; Sakar, Vehbi; Noterdaeme, Michele

    2010-05-01

    This article gives an overview of the consultant child and adolescent psychiatric services in the region of Upper Bavaria (Germany). The data of 257 children and adolescents with intellectual disability and psychiatric disorders were evaluated. About 14% of the children with ID in special schools or day care centers, and 40% of the children with ID in residential care showed a definite psychiatric disorder. The most frequently diagnosed disorders were adjustment disorders, hyperkinetic disorders and conduct disorders, as well as emotional problems and pervasive developmental disorders. Children with severe intellectual disability had more additional somatic disorders and were more impaired in their psychosocial functions. The results show the need for psychiatric services for children and adolescents with intellectual disability and psychiatric disorders. The development and implementation of integrative and interdisciplinary models is necessary to allow for adequate medical care for these patients.

  7. Epigenetic Etiology of Intellectual Disability.

    Science.gov (United States)

    Iwase, Shigeki; Bérubé, Nathalie G; Zhou, Zhaolan; Kasri, Nael Nadif; Battaglioli, Elena; Scandaglia, Marilyn; Barco, Angel

    2017-11-08

    Intellectual disability (ID) is a prevailing neurodevelopmental condition associated with impaired cognitive and adaptive behaviors. Many chromatin-modifying enzymes and other epigenetic regulators have been genetically associated with ID disorders (IDDs). Here we review how alterations in the function of histone modifiers, chromatin remodelers, and methyl-DNA binding proteins contribute to neurodevelopmental defects and altered brain plasticity. We also discuss how progress in human genetics has led to the generation of mouse models that unveil the molecular etiology of ID, and outline the direction in which this field is moving to identify therapeutic strategies for IDDs. Importantly, because the chromatin regulators linked to IDDs often target common downstream genes and cellular processes, the impact of research in individual syndromes goes well beyond each syndrome and can also contribute to the understanding and therapy of other IDDs. Furthermore, the investigation of these disorders helps us to understand the role of chromatin regulators in brain development, plasticity, and gene expression, thereby answering fundamental questions in neurobiology. Copyright © 2017 the authors 0270-6474/17/3710773-10$15.00/0.

  8. Use of health services in the last year of life and cause of death in people with intellectual disability: a retrospective matched cohort study.

    Science.gov (United States)

    Brameld, Kate; Spilsbury, Katrina; Rosenwax, Lorna; Leonard, Helen; Semmens, James

    2018-02-25

    To describe the cause of death together with emergency department presentations and hospital admissions in the last year of life of people with intellectual disability. A retrospective matched cohort study using de-identified linked data of people aged 20 years or over, with and without intellectual disability who died during 2009 to 2013 in Western Australia. Emergency department presentations and hospital admissions in the last year of life of people with intellectual disability are described along with cause of death. Of the 63 508 deaths in Western Australia from 2009 to 2013, there were 591 (0.93%) decedents with a history of intellectual disability. Decedents with intellectual disability tended to be younger, lived in areas of more social disadvantage, did not have a partner and were Australian born compared with all other decedents. A matched comparison cohort of decedents without intellectual disability (n=29 713) was identified from the general population to improve covariate balance.Decedents with intellectual disability attended emergency departments more frequently than the matched cohort (mean visits 3.2 vs 2.5) and on average were admitted to hospital less frequently (mean admissions 4.1 vs 6.1), but once admitted stayed longer (average length of stay 5.2 days vs 4.3 days). People with intellectual disability had increased odds of presentation, admission or death from conditions that have been defined as ambulatory care sensitive and are potentially preventable. These included vaccine-preventable respiratory disease, asthma, cellulitis and convulsions and epilepsy. People with intellectual disability were more likely to experience potentially preventable conditions at the end of their lives. This indicates a need for further improvements in access, quality and coordination of healthcare to provide optimal health for this group. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved

  9. Epilepsy and Intellectual and Developmental Disabilities

    Science.gov (United States)

    Oguni, Hirokazu

    2013-01-01

    The co-occurrence of epilepsy in people with intellectual disabilities (ID) and other developmental disabilities (DD) has received attention because it has a significant negative impact on health, well-being, and quality of life. The current research investigating the frequency and form of epilepsy in children with ID and DD is reviewed, with…

  10. Non-verbal communication between Registered Nurses Intellectual Disability and people with an intellectual disability: an exploratory study of the nurse's experiences. Part 1.

    Science.gov (United States)

    Martin, Anne-Marie; Connor-Fenelon, Maureen O'; Lyons, Rosemary

    2012-03-01

    This is the first of two articles presenting the findings of a qualitative study which explored the experiences of Registered Nurses Intellectual Disability (RNIDs) of communicating with people with an intellectual disability who communicate non-verbally. The article reports and critically discusses the findings in the context of the policy and service delivery discourses of person-centredness, inclusion, choice and independence. Arguably, RNIDs are the profession who most frequently encounter people with an intellectual disability and communication impairment. The results suggest that the communication studied is both complicated and multifaceted. An overarching category of 'familiarity/knowing the person' encompasses discrete but related themes and subthemes that explain the process: the RNID knowing the service-user; the RNID/service-user relationship; and the value of experience. People with an intellectual disability, their families and disability services are facing a time of great change, and RNIDs will have a crucial role in supporting this transition.

  11. Educational Outcomes for Secondary Students with Mild Intellectual Disability

    Science.gov (United States)

    Bouck, Emily C.

    2017-01-01

    Attention to the educational programming of secondary students with mild intellectual disability has declined in recent decades, although the need for the attention has not, particularly when considering the postschool outcomes of this population. This paper discusses the current state postschool outcomes and secondary education services for…

  12. Intellectual Disability in Children; a Systematic Review

    Directory of Open Access Journals (Sweden)

    Dasteh Goli N.*BSc

    2016-03-01

    Full Text Available Abstract Aims: Intellectual disability is a condition characterised by the inability of a person to undertake normal psychological activities. The purpose of this study was to systematically review the intellectual disability in children and discuss the implications of different environmental and genetic factors, which describe particular categories of intellectual disable cases. Information & Methods: This systematic review was performed in 2014 by searching the existing literature in PubMed database in the scope of “intellectual disability in children”. 38 articles written from 1987 to 2014 were selected and surveyed for review. Findings: The prevalence of ID in the general population is estimated to be approximately 1%. ID disorder is multi-causal, encompassing all factors that interfere with brain development and functioning. Causes usually are classified according to the time of the insult, as prenatal, perinatal, and postnatal or acquired. Some causes, such as environmental toxins or endocrine disorders, may act at multiple times. Others, such as genetic disorders, have different manifestations during postnatal development. The outcome for ID is variable and depends upon the aetiology, associated conditions, and environmental and social factors. The goals of management of ID are to strengthen areas of reduced function, minimize extensive deterioration in mental cognitive and adaptability, and lastly, to promote optimum or normal functioning of the individuals in their community. Conclusion: Prominent features of ID include significant failures in both intellectual functioning and adaptive behaviour, which comprises daily social and practical life skills, commencing earlier in life.

  13. Identifying classes of persons with mild intellectual disability or borderline intellectual functioning: a latent class analysis.

    Science.gov (United States)

    Nouwens, Peter J G; Lucas, Rosanne; Smulders, Nienke B M; Embregts, Petri J C M; van Nieuwenhuizen, Chijs

    2017-07-17

    Persons with mild intellectual disability or borderline intellectual functioning are often studied as a single group with similar characteristics. However, there are indications that differences exist within this population. Therefore, the aim of this study was to identify classes of persons with mild intellectual disability or borderline intellectual functioning and to examine whether these classes are related to individual and/or environmental characteristics. Latent class analysis was performed using file data of 250 eligible participants with a mean age of 26.1 (SD 13.8, range 3-70) years. Five distinct classes of persons with mild intellectual disability or borderline intellectual functioning were found. These classes significantly differed in individual and environmental characteristics. For example, persons with a mild intellectual disability experienced fewer problems than those with borderline intellectual disability. The identification of five classes implies that a differentiated approach is required towards persons with mild intellectual disability or borderline intellectual functioning.

  14. Reported Wandering Behavior among Children with Autism Spectrum Disorder and/or Intellectual Disability

    Science.gov (United States)

    Rice, Catherine E.; Zablotsky, Benjamin; Avila, Rosa M.; Colpe, Lisa J.; Schieve, Laura A.; Pringle, Beverly; Blumberg, Stephen J.

    2016-01-01

    Objective To characterize wandering, or elopement, among children with autism spectrum disorder (ASD) and intellectual disability. Study design Questions on wandering in the previous year were asked of parents of children with ASD with and without intellectual disability and children with intellectual disability without ASD as part of the 2011 Survey of Pathways to Diagnosis and Services. The Pathways study sample was drawn from the much larger National Survey of Children with Special Health Care Needs conducted in 2009-2010. Results For children with special healthcare needs diagnosed with either ASD, intellectual disability, or both, wandering or becoming lost during the previous year was reported for more than 1 in 4 children. Wandering was highest among children with ASD with intellectual disability (37.7%) followed by children with ASD without intellectual disability (32.7%), and then children with intellectual disability without ASD (23.7%), though the differences between these groups were not statistically significant. Conclusions This study affirms that wandering among children with ASD, regardless of intellectual disability status, is relatively common. However, wandering or becoming lost in the past year was also reported for many children with intellectual disability, indicating the need to broaden our understanding of this safety issue to other developmental disabilities. PMID:27157446

  15. Needs and Supports of People with Intellectual Disability and Their Families in Catalonia

    Science.gov (United States)

    Vilaseca, Rosa; Gràcia, Marta; Beltran, Francesc S.; Dalmau, Mariona; Alomar, Elisabeth; Adam-Alcocer, Ana Luisa; Simó-Pinatella, David

    2017-01-01

    Background: The study assesses the support needs of individuals with intellectual disability and their families in Catalonia. The present authors examine family quality of life (FQoL), identify the individual services required and assess families' perceptions of the extent to which their family member with intellectual disability and they…

  16. Perceptions of the Risks and Benefits of Internet Access and Use by People with Intellectual Disabilities

    Science.gov (United States)

    Chadwick, Darren D.; Quinn, Sally; Fullwood, Chris

    2017-01-01

    Background: Information and communication technologies, with the Internet at the forefront, have the potential to enhance the knowledge, service, employment, development and social interactional opportunities available to people with intellectual disabilities. Despite this, people with intellectual disabilities are not accessing the Internet to…

  17. Intellectual disability sport and Paralympic classification

    OpenAIRE

    Anna van Dijk; Klára Daďová; Irena Martínková

    2017-01-01

    Sometimes it might seem that elite disability sport, especially as represented by the Paralympic Movement, is only for athletes with an amputation, or a spinal cord injury, or cerebral palsied or blind athletes, rather than for athletes with an intellectual disability (ID). However, after we set out the various opportunities open to ID athletes, that offer different kinds of sporting engagement, we find interesting and alarming issues with respect to the elite competitive event offer for athl...

  18. Intellectual disability and patient activation after release from prison: a prospective cohort study.

    Science.gov (United States)

    Young, J T; Cumming, C; van Dooren, K; Lennox, N G; Alati, R; Spittal, M J; Brophy, L; Preen, D B; Kinner, S A

    2017-10-01

    Intellectual disability and patient activation may be important drivers of inequities in health service access and health outcomes for people with intellectual disability transitioning from prison to the community. We assessed the association between intellectual disability and patient activation after prison release and examined whether this association varied, depending on whether intellectual disability was identified prior to prison release. Overall, 936 prisoners were screened for intellectual disability by using the Hayes Ability Screening Index and completed the Patient Activation Measure (PAM) within 6 weeks of prison release and again at 1, 3 and 6 months post-release. We estimated the association between intellectual disability status and PAM scores by using a multilevel linear model, adjusting for sociodemographic, behavioural, health and criminogenic factors. We used propensity score matching to estimate the impact of being identified with intellectual disability prior to release from prison on the change in mean PAM score after prison release. Compared with those who screened negative for intellectual disability, ex-prisoners who screened positive, both with and without prior identification of intellectual disability, had significantly decreased mean PAM scores [(B = -4.3; 95% CI: -6.3, -2.4) and (B = -4.5; 95% CI: -6.8, -2.3), respectively] over 6 months of follow-up. Among those who reported being identified with intellectual disability prior to release from prison, a significant increase in PAM score at the 6-month follow-up interview (B = 5.89; 95% CI: 2.35, 9.42; P = 0.001) was attributable to being identified with intellectual disability prior to release. Ex-prisoners screening positive for possible intellectual disability have decreased patient activation for at least 6 months after release from prison. However, individuals whose possible intellectual disability is unidentified appear to be particularly vulnerable. Incarceration is a

  19. Reliability and Utility of the Behaviour Support Plan Quality Evaluation Tool (BSP-QEII) for Auditing and Quality Development in Services for Adults with Intellectual Disability and Challenging Behaviour

    Science.gov (United States)

    McVilly, K.; Webber, L.; Paris, M.; Sharp, G.

    2013-01-01

    Background: Having an objective means of evaluating the quality of behaviour support plans (BSPs) could assist service providers and statutory authorities to monitor and improve the quality of support provided to people with intellectual disability (ID) who exhibit challenging behaviour. The Behaviour Support Plan Quality Evaluation Guide II…

  20. Children With Intellectual Disability and Hospice Utilization: The Moderating Effect of Residential Care.

    Science.gov (United States)

    Lindley, Lisa C

    2017-01-01

    Children with intellectual disability commonly lack access to pediatric hospice care services. Residential care may be a critical component in providing access to hospice care for children with intellectual disability. This research tested whether residential care intensifies the relationship between intellectual disability and hospice utilization (ie, hospice enrollment, hospice length of stay), while controlling for demographic characteristics. Multivariate regression analyses were conducted using 2008 to 2010 California Medicaid claims data. The odds of children with intellectual disability in residential care enrolling in hospice care were 3 times higher than their counterparts in their last year of life, when controlling for demographics. Residential care promoted hospice enrollment among children with intellectual disability. The interaction between intellectual disability and residential care was not related to hospice length of stay. Residential care did not attenuate or intensify the relationship between intellectual disability and hospice length of stay. The findings highlight the important role of residential care in facilitating hospice enrollment for children with intellectual disability. More research is needed to understand the capability of residential care staff to identify children with intellectual disability earlier in their end-of-life trajectory and initiate longer hospice length of stays.

  1. Suicide behavior in persons with intellectual disability.

    Science.gov (United States)

    Merrick, Joav; Merrick, Efrat; Lunsky, Yona; Kandel, Isack

    2005-09-08

    Suicide is today in the Western world one of the leading causes of death and most people have had suicidal ideation at some time during their life. In the population of persons with intellectual disability some researchers have thought that impaired intellectual capacity could act as a buffer to suicidal behavior, but the fact is that the few studies conducted in that population contest this assumption and showed that the characteristics of suicidality in this population are very similar to persons without intellectual disability. This paper reviews the studies conducted and describe the symptomatology in this population. Professionals working with this population should therefore be aware of and assess for this behavior. Sadness or depression are symptoms that could indicate later suicidal behavior.

  2. Suicide Behavior in Persons with Intellectual Disability

    Directory of Open Access Journals (Sweden)

    Joav Merrick

    2005-01-01

    Full Text Available Suicide is today in the Western world one of the leading causes of death and most people have had suicidal ideation at some time during their life. In the population of persons with intellectual disability some researchers have thought that impaired intellectual capacity could act as a buffer to suicidal behavior, but the fact is that the few studies conducted in that population contest this assumption and showed that the characteristics of suicidality in this population are very similar to persons without intellectual disability. This paper reviews the studies conducted and describe the symptomatology in this population. Professionals working with this population should therefore be aware of and assess for this behavior. Sadness or depression are symptoms that could indicate later suicidal behavior.

  3. Best Practices in Intellectual Disability Identification

    Science.gov (United States)

    Fiorello, Catherine A.; Jenkins, Tiffany K.

    2018-01-01

    This article is an overview of identification of intellectual disabilities (ID), with a focus on meeting legal and ethical requirements when assessing children from culturally and linguistically diverse backgrounds and those living in poverty. Specific procedures and recommended instruments will be reviewed.

  4. Aging in Rare Intellectual Disability Syndromes

    Science.gov (United States)

    Dykens, Elisabeth M.

    2013-01-01

    This review highlights several methodological challenges involved in research on aging, health, and mortality in adults with rare intellectual disability syndromes. Few studies have been performed in this area, with research obstacles that include: the ascertainment of older adults with genetic versus clinical diagnoses; likelihood that adults…

  5. Perceptions of the Judiciary and Intellectual Disability.

    Science.gov (United States)

    Cockram, Judith; And Others

    1993-01-01

    Seventeen Supreme Court Judges, District Court Judges, and Magistrates in Western Australia were surveyed to examine perceptions concerning overrepresentation of individuals with intellectual disability in the criminal justice system. The judiciary felt these individuals had several characteristics that would disadvantage them in contacts with the…

  6. An inexorable rise in intellectual disability?

    NARCIS (Netherlands)

    Michiel Ras; Isolde Woittiez; Hetty van Kempen; Klarita Sadiraj

    2010-01-01

    Original title: Steeds meer verstandelijk gehandicapten? Demand for intellectual disability care has grown strongly in the Netherlands in recent years. Partly at the request of the Dutch Ministry of Health, Welfare and Sport, the Netherlands Institute for Social Research/SCP measured the

  7. Legal Rights & Intellectual Disability: A Short Guide.

    Science.gov (United States)

    Hall, Julia, Ed.; And Others

    The book examines actions that may be taken to redress wrongs illegally perpetrated against people with intellectual disabilities in New South Wales, Australia. Ten topic areas are addressed (sample subtopics in parentheses): protecting rights (complaints to government departments, use of the ombudsman); discrimination (legal aid); personal…

  8. Genetic testing of aetiology of intellectual disability in a dedicated physical healthcare outpatient clinic for adults with intellectual disability.

    Science.gov (United States)

    Wallace, R A

    2016-02-01

    No guidelines exist for assessment of aetiology of intellectual disability in adults with intellectual disability by adult physicians, although robust guidelines exist for paediatric populations. It was speculated that the paediatric guidelines would also be suitable for adults. In rural/regional setting with limited clinical genetics, to perform a quality assurance evaluation on genetics assessment of aetiology of developmental disability in adults attending a dedicated healthcare clinic for adults with intellectual disability, compared results with paediatric standards, speculates if these seem appropriate for adults and speculates on a role for clinical genetics services. Retrospective chart audit of eligible patients looking at genetic clinical assessment, tests selected (molecular karyotype, G banding, metabolics), and yields of positive results. The results were compared with the recommended paediatric guidelines. Of 117 eligible adult patients, ideal genetic history was incomplete for 40% of patients without Down syndrome because of physician cause and lack of information. The number of abnormal genetic results increased from 46% to 66%, mainly from the molecular karyotype, though not all may have been clinically relevant. The improved yield from this test was similar to that in paediatric studies. Use of G banding and metabolic testing could be refined. Improvement can be made in clinical genetic assessment, but results generally support use of molecular karyotyping as first tier testing of cause of unknown intellectual disability in adults, as in the case for paediatric populations. The study highlights a necessary complementary role for clinical geneticists to interpret abnormal results. © 2016 Royal Australasian College of Physicians.

  9. Parent training support for intellectually disabled parents.

    Science.gov (United States)

    Coren, Esther; Hutchfield, Jemeela; Thomae, Manuela; Gustafsson, Carina

    2010-06-16

    Intellectual disability may impact on an individual's capacity to parent a child effectively. Research suggests that the number of intellectually disabled people with children is increasing. Children of parents with intellectual disabilities may be at increased risk of neglectful care which could lead to health, developmental and behavioural problems, or increased risk of intellectual disability.However, there is some indication that some parents with intellectual disabilities are able to provide adequate child care if they are given appropriate training and support to do so. To assess the effectiveness of parent training interventions to support the parenting of parents with intellectual disabilities We searched the following databases: Cochrane Central Register of Controlled Trials (CENTRAL, The Cochrane Library), MEDLINE, EMBASE, CINAHL, PsycINFO, ASSIA, Sociological Abstracts, Dissertation Abstracts International, MetaRegister of Controlled Trials, and ZETOC. Randomised controlled trials comparing parent training interventions for parents with intellectual disabilities with usual care or with a control group. Outcomes of interest were: the attainment of parenting skills specific to the intervention, safe home practices and the understanding of child health. Two review authors independently assessed risk of bias and undertook data extraction. Three trials met the inclusion criteria for this review but no meta-analysis was possible. One study reported improved maternal-child interaction following group parent training compared with the control group. The second study reported some improvements in parents knowledge of life threatening emergencies, ability to recognise dangers and identify precautions and smaller improvements in their ability to implement precautions, use medicines safely and recognise child illness and symptoms. The third study reported improvement in child care and safety skills following the intervention. There is some risk of bias in the

  10. National Disability Insurance Scheme, health, hospitals and adults with intellectual disability.

    Science.gov (United States)

    Wallace, Robyn A

    2018-03-01

    Preventable poor health outcomes for adults with intellectual disability in health settings have been known about for years. Subsequent analysis and the sorts of reasonable adjustments required in health and disability support settings to address these health gaps are well described, but have not really been embedded in practice in any significant way in either setting. As far as health is concerned, implementation of the National Disability Insurance Scheme (NDIS, the Scheme) affords an opportunity to recognise individual needs of people with intellectual disability to provide reasonable and necessary functional support for access to mainstream health services, to build capacity of mainstream health providers to supply services and to increase individual capacity to access services. Together these strands have potential to transform health outcomes. Success of the Scheme, however, rests on as yet incompletely defined operational interaction between NDIS and mainstream health services and inherently involves the disability sector. This interaction is especially relevant for adults with intellectual disability, known high users of hospitals and for whom hospital outcomes are particularly poor and preventable. Keys to better hospital outcomes are first, the receiving of quality person-centred healthcare from physicians and hospitals taking into account significance of intellectual disability and second, formulation of organised quality functional supports during hospitalisation. Achieving these require sophisticated engagement between consumers, the National Disability Insurance Agency, Commonwealth, State and Territory government leaders, senior hospital and disability administrators, NDIS service providers and clinicians and involves cross fertilisation of values, sharing of operational policies and procedures, determination of boundaries of fiscal responsibility for functional supports in hospital. © 2018 Royal Australasian College of Physicians.

  11. Intellectual disability and the prison setting

    Directory of Open Access Journals (Sweden)

    V. Tort

    2016-06-01

    Full Text Available Introduction: The prevalence of intellectual disability (ID in the prison setting has scarcely been studied. Although some approximations or estimates regarding people with intellectual disabilities have been performed in Spain, there is little in the way of reliable data. Objectives: 1 To determine the prevalence of ID in a sample population in the residential modules of a Spanish prison, 2 Obtain data on the prevalence of ID in prison psychiatric units and hospitals. Methods: 1 A TONI II test was performed on a sub-sample (n = 398 of a prevalence study in Spanish prisons33 to identify inmates with intellectual disabilities. 2 We reviewed the reports of the psychiatric department of Parc Sanitari Sant Joan de Deu to establish the diagnosis at discharge of patients with a primary diagnosis of intellectual disability 3 Data from the Directorate General of Prisons on the prevalence of ID in Prison Psychiatric Hospitals was reviewed. Results: The data obtained from the TONI II test found 3.77% of the study population has an IQ below 70, and 7.54 % has a borderline IQ rate. Assessment of penitentiary psychiatric hospitalization data showed these figures to be higher. Conclusions: The data from a Spanish prison population showed that ID levels were higher than those in the community, especially amongst prisoners requiring specialized psychiatric care. What is also evident is that adequate resources are required in prisons and in the community to provide better care for people with intellectual disabilities who are in the pathway of the criminal justice system.

  12. Suicidality among adults with intellectual disability.

    Science.gov (United States)

    Lunsky, Yona; Raina, Poonam; Burge, Philip

    2012-11-01

    The objective of the current study is to arrive at a better understanding of individuals with intellectual disability (ID) who threaten or attempt suicide. From a sample of 751 adults with ID who experienced a crisis, demographic and clinical profiles of 39 adults who threatened to commit suicide were compared to 28 adults who attempted suicide. These individuals were then compared to 337 adults who behaved aggressively toward others. Individuals who attempted suicide appeared similar to those who voiced suicide with the exception that suicide attempters were younger and more likely to visit the emergency department. Females, higher functioning individuals, and persons with a history of self-harm had higher odds of attempting or threatening suicide Research findings based on informant reported data, so diagnoses and delivery of services in hospital cannot be validated. Suicidality does occur in adults with ID, and can result in emergency department visits and hospitalizations. Recognition of variables associated with suicidality among those with ID by clinicians may allow for enhanced assessment, treatment services and ultimately more positive mental health outcomes for this group. Crown Copyright © 2012. Published by Elsevier B.V. All rights reserved.

  13. From "Learning Disability to Intellectual Disability"--Perceptions of the Increasing Use of the Term "Intellectual Disability" in Learning Disability Policy, Research and Practice

    Science.gov (United States)

    Cluley, Victoria

    2018-01-01

    Background: The term "intellectual disability" is increasingly used to refer to people with learning disabilities in British learning disability policy, practice and research. This change is undoubtedly a reflection of the changing international context. The inclusion of the term "intellectual disability" has been particularly…

  14. INTELLECTUAL DISABILITY IN INDIVIDULAS WITH MENTAL DISORDERS

    Directory of Open Access Journals (Sweden)

    Miodrag VUJOVIKJ

    2017-10-01

    Full Text Available Introduction: A successful treatment of any disorder, condition or disease requires timely detection and accurate diagnostics. This is precisely what is missing in individuals with a dual diagnosis of an intellectual disability and a mental disorder, both in Macedonia and worldwide. In order to overcome the deficiencies in the treatment, and to improve the quality of life for these individuals as well, they should be detected on time and then approached with diagnosing and preparation of a plan for treating them. Goal: The main goal of this research is obtaining a result of the presence of intellectual disability among institutionalized individuals with mental disorders on the basis of the type of mental disorder, the age and the gender of the person. Also, one of the main goals is presenting the mental deterioration in individuals with mental disorders, as well as its connection with the age of the individuals with mental disorder. Despite having the basic goals, this research, as well as research on this subject from all over the world, serves as an example for raising the awareness about the diversity and atypical presentations of the patients with a dual diagnosis of intellectual disability and mental disorder. Methodology: For achieving the goal and tasks of this research, 50 individuals with different diagnosis of mental disorder, different age and different gender were tested. The sample that took part in this research was a suitable sample, i.e. individuals that during the research were hospitalized in the below mentioned public health institution. The research took place in PHI Psychiatric Hospital „Skopje“ from Skopje. For collecting the data in this research, as well as for achieving the goals of the research, two methods, three research techniques and two instruments were used. The methods that were used during this research included the method of comparative analysis and the method of correlation analysis, while the techniques

  15. Ageing in individuals with intellectual disability: issues and concerns in Hong Kong.

    Science.gov (United States)

    Tse, M My; Kwan, R Yc; Lau, J L

    2018-02-01

    The increasing longevity of people with intellectual disability is testimony to the positive developments occurring in medical intervention. Nonetheless, early-onset age-related issues and concerns cause deterioration of their overall wellbeing. This paper aimed to explore the issues and concerns about individuals with intellectual disability as they age. Articles that discussed people older than 30 years with an intellectual disability and those that identified ageing health issues and concerns were included. Only studies reported in English from 1996 to 2016 were included. We searched PubMed, Google Scholar, and Science Direct using the terms 'intellectual disability', 'ageing', 'cognitive impairment', 'health', and 'screening'. Apart from the early onset of age-related health problems, dementia is more likely to develop by the age of 40 years in individuals with intellectual disability. Geriatric services to people with intellectual disability, however, are only available for those aged 60 years and older. Cognitive instruments used for the general population are not suitable for people with intellectual disability because of floor effects. In Hong Kong, the Chinese version of the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities is the only validated instrument for people with intellectual disability. The use of appropriate measurement tools to monitor the progression of age-related conditions in individuals with intellectual disability is of great value. Longitudinal assessment of cognition and function in people with intellectual disability is vital to enable early detection of significant deterioration. This allows for therapeutic intervention before substantial damage to the brain occurs such as dementia that hastens cognitive and functional decline.

  16. Central nervous system medication use in older adults with intellectual disability: Results from the successful ageing in intellectual disability study.

    Science.gov (United States)

    Chitty, Kate M; Evans, Elizabeth; Torr, Jennifer J; Iacono, Teresa; Brodaty, Henry; Sachdev, Perminder; Trollor, Julian N

    2016-04-01

    Information on the rates and predictors of polypharmacy of central nervous system medication in older people with intellectual disability is limited, despite the increased life expectancy of this group. This study examined central nervous system medication use in an older sample of people with intellectual disability. Data regarding demographics, psychiatric diagnoses and current medications were collected as part of a larger survey completed by carers of people with intellectual disability over the age of 40 years. Recruitment occurred predominantly via disability services across different urban and rural locations in New South Wales and Victoria. Medications were coded according to the Monthly Index of Medical Specialties central nervous system medication categories, including sedatives/hypnotics, anti-anxiety agents, antipsychotics, antidepressants, central nervous system stimulants, movement disorder medications and anticonvulsants. The Developmental Behaviour Checklist for Adults was used to assess behaviour. Data were available for 114 people with intellectual disability. In all, 62.3% of the sample was prescribed a central nervous system medication, with 47.4% taking more than one. Of those who were medicated, 46.5% had a neurological diagnosis (a seizure disorder or Parkinson's disease) and 45.1% had a psychiatric diagnosis (an affective or psychotic disorder). Linear regression revealed that polypharmacy was predicted by the presence of neurological and psychiatric diagnosis, higher Developmental Behaviour Checklist for Adults scores and male gender. This study is the first to focus on central nervous system medication in an older sample with intellectual disability. The findings are in line with the wider literature in younger people, showing a high degree of prescription and polypharmacy. Within the sample, there seems to be adequate rationale for central nervous system medication prescription. Although these data do not indicate non-adherence to

  17. Patterns of sport participation for youth with autism spectrum disorder and intellectual disability.

    Science.gov (United States)

    Ryan, Stephanie; Fraser-Thomas, Jessica; Weiss, Jonathan A

    2018-05-01

    Little is known about sport participation in youth with Autism Spectrum Disorder (ASD). The current study examined sport characteristics (frequency, diversity, positive social experiences [PSE]) for youth with ASD and intellectual disability compared to youth with intellectual disability alone and explored the personal and contextual correlates of involvement. Parents (N = 409) completed an online survey, and multiple mediation analyses were used to examine the factors that explained the relationships between sport involvement in youth with ASD and intellectual disability. No significant main effects of ASD status were found for frequency or diversity, but youth with intellectual disability alone had higher scores for PSE compared to youth with ASD and intellectual disability. Sociocommunicative abilities, coach relationship and resources mediated the relationship between ASD status and PSE. A better understanding of the factors related to sport is essential for allowing families, service providers and policy makers to improve involvement for youth with ASD. © 2017 John Wiley & Sons Ltd.

  18. Inclusive Education for Students with Intellectual Disability

    Directory of Open Access Journals (Sweden)

    Janaki Balakrishnan

    2012-08-01

    Full Text Available This paper traces briefly the evolution of Inclusive Education for students with special education needs (SEN and discusses some significant challenges in its implementation. While the aim of Inclusive Education is to include all children with SEN in mainstream schools, there are many challenges that have to be overcome for their education to be meaningful. This paper focuses primarily on the inclusion of students with intellectual disability, since they are likely to be the largest number with special education needs in ‘inclusive’ schools. It offers the outline of a curriculum that may be derived from the mainstream one in use, and suggests a model that emphasises the replacement of age / grade placement, as is the present practice, with experience and maturity underpinning learning in persons with intellectual disability. The proposed model needs, of course, to be field-tested.doi 10.5463/DCID.v23i2.111

  19. Intellectual disability in cerebral palsy: a population-based retrospective study.

    Science.gov (United States)

    Reid, Susan M; Meehan, Elaine M; Arnup, Sarah J; Reddihough, Dinah S

    2018-04-18

    A population-based observational study design was used to describe the epidemiology of intellectual disability in cerebral palsy (CP) in terms of clinical and neuroimaging associations, and to report the impact of intellectual disability on utilization of health services and length of survival. Population CP registry data were used to retrospectively assess the frequency of intellectual disability and strength of associations between intellectual disability and mobility, epilepsy, vision, hearing, communication, and neuroimaging patterns (n=1141). Data linkage was undertaken to assess usage of hospital inpatient and emergency department services. Survival analysis was performed in a 30-year birth cohort (n=3248). Intellectual disability, present in 45% of the cohort, was associated with non-ambulation (47% vs 8%), later walking (mean 2y 7mo vs 1y 9mo), hypotonic (8% vs 1%) or dyskinetic (9% vs 5%) CP, a quadriplegic pattern of motor impairment (42% vs 5%), epilepsy (52% vs 12%), more emergency and multi-day hospital admissions, and reduced 35-year survival (96% vs 71%). Grey matter injuries (13% vs 6%), malformations (18% vs 6%), and miscellaneous neuroimaging patterns (12% vs 4%) were more common in people with intellectual disability. Intellectual disability adds substantially to the overall medical complexity in CP and may increase health and mortality disparities. Cerebral maldevelopments and grey matter injuries are associated with higher intellectual disability rates. Health care is more 'crisis-driven' and 'reactive' in children with co-occurring intellectual disability. Length of survival is reduced in individuals with CP and co-occurring intellectual disability. © 2018 Mac Keith Press.

  20. 'It's our everyday life' - The perspectives of persons with intellectual disabilities in Norway.

    Science.gov (United States)

    Witsø, Aud Elisabeth; Hauger, Brit

    2018-01-01

    This study illuminates how adults with intellectual disabilities understand and describe their everyday life and its shortcomings when it comes to equal rights in the context of Norwegian community living. An inclusive research design, including nine persons with mild intellectual disability, two university researchers and two intellectual disability nurses from the municipality, was undertaken. An inductive thematic analysis of data identified three key themes: everyday life - context, rhythm and structure, social participation and staff - an ambiguous part of everyday life. Results show that service provision had institutional qualities; participants experienced lack of information and reduced possibilities for social inclusion and community participation like everyone else. More attention on the role of policy development, support staff and leadership, in relation to facilitating an everyday life with more user involvement, social inclusion and community participation of people needing support, is essential. Participatory, appreciative, action and reflection in workshops for persons with intellectual disabilities and support staff represent a promising approach to promote the voices and interests of persons with intellectual disabilities. Accessible abstract This article tells you about the everyday life of people with intellectual disabilities living in Norway. Nine people with intellectual disabilities worked together with two university researchers and two intellectual disability nurses in the community, in workshops. The people with intellectual disabilities liked to have their own apartment and going to work every day. They said that they wanted more social participation with friends and more participation in activities in the community, just like everyone else. They wanted to be treated with more respect by their staff. All participants in the project saw great value in working together and some of them are working together in a new project about

  1. Mainstream health professionals' stigmatising attitudes towards people with intellectual disabilities : a systematic review

    NARCIS (Netherlands)

    Pelleboer-gunnink, H.A.; Van Oorsouw, W.M.W.J.; Van Weeghel, J.; Embregts, P.J.C.M.

    Background Equal access to mainstream healthcare services for people with intellectual disabilities (ID) still requires attention. Although recent studies suggest that health professionals hold positive attitudes towards people with ID, stigmatising attitudes may influence their efforts to serve

  2. The Relation between Intellectual Functioning and Adaptive Behavior in the Diagnosis of Intellectual Disability

    Science.gov (United States)

    Tassé, Marc J.; Luckasson, Ruth; Schalock, Robert L.

    2016-01-01

    Intellectual disability originates during the developmental period and is characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. In this article, we present a brief history of the diagnostic criteria of intellectual disability for both…

  3. Bereavement process of people with intellectual disability

    Directory of Open Access Journals (Sweden)

    Virginia MUÑIZ FERNÁNDEZ

    2018-03-01

    Full Text Available The main goal of this work is focused on detecting the support needs of people with intellectual disabilities during the bereavement process in order to guide about professional interventions and practices aimed to provide more adequate individualized support to their real needs. The sample consists of 93 adults with ID, with ages ranging from 21 to 72 years old (M = 49.9; SD = 11.79, who have suffered the loss of a significant person. The professionals who worked with them and knew them well completed two questionnaires: Staff Attitude Questionnaire (SAQ and Bereavement Needs Assessment (BNAT. Beside descriptive analyses, results were analyzed according to several variables (i.e., gender, age, level of intellectual disability, and level of dependency. Level of intellectual disability and level of dependency were the ones that resulted significant. In order to provide the best answer to their needs, good practices are suggested such as facilitating the understanding of loss, helping them express feelings and emotions, dealing with each case individually, and encouraging to continue education about death.

  4. Experiences of parents of children with intellectual disabilities in the Ashanti Region of Ghana

    Directory of Open Access Journals (Sweden)

    Eric Badu

    2016-07-01

    Full Text Available Parents of children with intellectual disabilities could experience difficulties associated with their care. Yet, insight into individual experiences is inadequate to guide effective responses to the needs of parents and their sons and daughters with intellectual disability. This study sought to explore the experiences of parents of children with intellectual disability with the aim of making these experiences visible to guide the design and provision of support services for the parents and their children. In-depth interviews were conducted with 20 parents of children with intellectual disability between the ages of 4 and 15 years residing in the Ashanti Region of Ghana. Data were analyzed using qualitative content analysis to explore themes that describe the experiences of the parents. The study found that parents of intellectually disabled children encounter challenges looking after their children due to the negative perceptions associated with having such children. Financial costs and managing behavioral challenges of intellectually disabled children were also major sources of stressors for parents. Although informal support and assurances from professionals alleviated parental stress and gave them some hope about the future of their children, these support services seem inadequate. A more structured support programme that includes financial empowerment of the parents and recognizes the importance of early detection and intervention practices is needed.  Keywords: Intellectual disability, parents, caregivers, support services, health professionals

  5. Psychodynamic Therapy and Intellectual Disabilities: Dealing with Challenging Behaviour.

    Science.gov (United States)

    Berry, Paul

    2003-01-01

    Four case studies concerning long-term psychodynamic treatment of German individuals with intellectual disabilities are presented: an aggressive young man with a mild intellectual disability; a young man with multiple disabilities with destructive behavior; a withdrawn young woman with self-destructive behavior; and a young man with autism with…

  6. Cell Phone Use by Adults with Intellectual Disabilities

    Science.gov (United States)

    Bryen, Diane Nelson; Carey, Allison; Friedman, Mark

    2007-01-01

    Although cell phone use has grown dramatically, there is a gap in cell phone access between people with disabilities and the general public. The importance of cell phone use among people with intellectual disabilities and studies about use of cell phones by adults with intellectual disabilities was described. Our goal was to determine the extent…

  7. Exploring the self-concepts of persons with intellectual disabilities.

    Science.gov (United States)

    Li, Eria Ping-Ying; Tam, Alan Sing-Fai; Man, David Wai-Kwong

    2006-03-01

    This study explores the self-concepts of Hong Kong Chinese with intellectual disabilities. Face-to-face and individual interviews were conducted in Cantonese, using the Chinese version of the Adult Source of Self-Esteem Inventory (ASSEI) together with three open-ended questions to explore the participants' self-conceptions in different life domains. An opportunity sample of 135 young adults with intellectual disabilities was interviewed. The findings showed that the family self, the social self and achievement in school and work were the self-concept attributes most important to the participants. The participants of this study had a higher total self-concept than that of a comparison group of people without disabilities when the participants used the in-group social comparison to maintain positive self-perception. The importance of partnership with family, self-concept enhancement strategies and quality employment service are discussed in order to facilitate people with intellectual disabilities to develop more positive self-concepts and thus achieve better community integration.

  8. Attitudes towards People with Disabilities--What Do People with Intellectual Disabilities Have to Say?

    Science.gov (United States)

    Corr McEvoy, Sandra; Keenan, Emer

    2014-01-01

    Attitudes towards people with intellectual disabilities have traditionally been very negative, resulting in people with intellectual disabilities being treated badly by other. This claim was explored by conducting focus groups with adults who have an intellectual disability to find out about their everyday experiences in different places and using…

  9. A quantitative study of attitudes toward the research participation of adults with intellectual disability: Do stakeholders agree?

    Science.gov (United States)

    McDonald, Katherine E; Conroy, Nicole E; Olick, Robert S

    2017-12-13

    Attitudes toward the research participation of adults with intellectual disability inform research policy and practice, impact interest in and support for research participation, and promote or discourage the generation of new knowledge to promote health among adults with intellectual disability. Yet we know little about these beliefs among the public and the scientific community. We quantitatively studied attitudes among adults with intellectual disability, family and friends, disability service providers, researchers, and Institutional Review Board (IRB) members. We predicted that adults with intellectual disability, and researchers would espouse views most consistent with disability rights, whereas IRB members, and to a lesser degree family, friends, and service providers, would espouse more protective views. We surveyed five hundred and twelve members of the five participant stakeholder groups on their attitudes toward the research participation of adults with intellectual disability. We found broad support for research about people with intellectual disability, though slightly more tempered support for their direct participation therein. In general, IRB members and to some extent adults with intellectual disability endorsed direct participation less than others. We also found that adults with intellectual disability strongly believed in their consent capacity. Resources should be directed toward health-related research with adults with intellectual disability, and interventions should be pursued to address ethical challenges and promote beliefs consistent with human rights. Copyright © 2017 Elsevier Inc. All rights reserved.

  10. Postoperative adverse outcomes in intellectually disabled surgical patients: a nationwide population-based study.

    Directory of Open Access Journals (Sweden)

    Jui-An Lin

    Full Text Available BACKGROUND: Intellectually disabled patients have various comorbidities, but their risks of adverse surgical outcomes have not been examined. This study assesses pre-existing comorbidities, adjusted risks of postoperative major morbidities and mortality in intellectually disabled surgical patients. METHODS: A nationwide population-based study was conducted in patients who underwent inpatient major surgery in Taiwan between 2004 and 2007. Four controls for each patient were randomly selected from the National Health Insurance Research Database. Preoperative major comorbidities, postoperative major complications and 30-day in-hospital mortality were compared between patients with and without intellectual disability. Use of medical services also was analyzed. Adjusted odds ratios using multivariate logistic regression analyses with 95% confidence intervals were applied to verify intellectual disability's impact. RESULTS: Controls were compared with 3983 surgical patients with intellectual disability. Risks for postoperative major complications were increased in patients with intellectual disability, including acute renal failure (odds ratio 3.81, 95% confidence interval 2.28 to 6.37, pneumonia (odds ratio 2.01, 1.61 to 2.49, postoperative bleeding (odds ratio 1.35, 1.09 to 1.68 and septicemia (odds ratio 2.43, 1.85 to 3.21 without significant differences in overall mortality. Disability severity was positively correlated with postoperative septicemia risk. Medical service use was also significantly higher in surgical patients with intellectual disability. CONCLUSION: Intellectual disability significantly increases the risk of overall major complications after major surgery. Our findings show a need for integrated and revised protocols for postoperative management to improve care for intellectually disabled surgical patients.

  11. Consensus statement of the International Summit on Intellectual Disability and Dementia on valuing the perspectives of persons with intellectual disability.

    Science.gov (United States)

    Watchman, Karen; Janicki, Matthew P; Udell, Leslie; Hogan, Mary; Quinn, Sam; Beránková, Anna

    2018-01-01

    The International Summit on Intellectual Disability and Dementia covered a range of issues related to dementia and intellectual disability, including the dearth of personal reflections of persons with intellectual disability affected by dementia. This article reflects on this deficiency and explores some of the personal perspectives gleaned from the literature, from the Summit attendees and from the experiences of persons with intellectual disability recorded or scribed in advance of the two-day Summit meeting. Systemic recommendations included reinforcing the value of the involvement of persons with intellectual disability in (a) research alongside removing barriers to inclusion posed by institutional/ethics review boards, (b) planning groups that establish supports for dementia and (c) peer support. Practice recommendations included (a) valuing personal perspectives in decision-making, (b) enabling peer-to-peer support models, (c) supporting choice in community-dwelling arrangements and (d) broadening availability of materials for persons with intellectual disability that would promote understanding of dementia.

  12. Is the amount of exposure to aggressive challenging behaviour related to staff work-related well-being in intellectual disability services? Evidence from a clustered research design.

    Science.gov (United States)

    Flynn, Samantha; Hastings, Richard P; Gillespie, David; McNamara, Rachel; Randell, Elizabeth

    2018-04-17

    Previous research has demonstrated an association between aggressive challenging behaviour (CB) and reductions in work-related well-being for intellectual disability (ID) support staff. Much of this research has used subjective measures of CB. To examine whether exposure to aggressive CB is associated with reduced work-related well-being in staff working in ID residential settings across the UK. A cross-sectional analysis was undertaken as part of a randomised trial; 186 staff from 100 settings completed questionnaires on their CB self-efficacy, empathy, positive work motivation, and burnout. Objective measures of aggressive CB in the preceding 16 weeks were collected from each setting. There was little association between staff exposure to aggressive CB and work-related well-being. Clustering effects were found for emotional exhaustion and positive work motivation, suggesting these variables are more likely to be influenced by the environment in which staff work. The level of clustering may be key to understanding how to support staff working in ID residential settings, and should be explored further. Longitudinal data, and studies including a comparison of staff working in ID services without aggressive CB exposure are needed to fully understand any association between aggressive CB and staff well-being. Copyright © 2018 Elsevier Ltd. All rights reserved.

  13. Position of the Academy of Nutrition and Dietetics: nutrition services for individuals with intellectual and developmental disabilities and special health care needs.

    Science.gov (United States)

    Ptomey, Lauren T; Wittenbrook, Wendy

    2015-04-01

    It is the position of the Academy of Nutrition and Dietetics that nutrition services provided by registered dietitian nutritionists (RDNs) and nutrition and dietetics technicians, registered (NDTRs), who work under RDN supervision, are essential components of comprehensive care for adults with intellectual and developmental disabilities (IDD) and children and youth with special health care needs (CYSHCN). Nutrition services should be provided throughout life in a manner that is interdisciplinary, family-centered, community based, and culturally competent. Individuals with IDD and CYSHCN have many risk factors requiring nutrition interventions, including growth alterations (eg, failure to thrive, obesity, or growth retardation), metabolic disorders, poor feeding skills, drug-nutrient interactions, and sometimes partial or total dependence on enteral or parenteral nutrition. Furthermore, these individuals are also more likely to develop comorbid conditions, such as obesity or endocrine disorders that require nutrition interventions. Poor nutrition-related health habits, limited access to services, and long-term use of multiple medications are considered health risk factors. Timely and cost-effective nutrition interventions can promote health maintenance and reduce risk and cost of comorbidities and complications. Public policy for individuals with IDD and CYSHCN has evolved, resulting in a transition from institutional facilities and programs to community and independent living. The expansion of public access to technology and health information on the Internet challenges RDNs and NDTRs to provide accurate scientific information to this rapidly growing and evolving population. RDNs and NDTRs with expertise in this area are best prepared to provide appropriate nutrition information to promote wellness and improve quality of life. Copyright © 2015 Academy of Nutrition and Dietetics. Published by Elsevier Inc. All rights reserved.

  14. Genetics Home Reference: alpha thalassemia X-linked intellectual disability syndrome

    Science.gov (United States)

    ... Alpha thalassemia X-linked intellectual disability syndrome Alpha thalassemia X-linked intellectual disability syndrome Printable PDF Open ... to view the expand/collapse boxes. Description Alpha thalassemia X-linked intellectual disability syndrome is an inherited ...

  15. What’s the Harm? Harms in Research with Adults with Intellectual Disability

    Science.gov (United States)

    McDonald, Katherine E.; Conroy, Nicole E.; Olick, Robert S.

    2017-01-01

    Scientific advances can improve the lives of adults with intellectual disability, yet concerns that research participation may impose harm impede scientific progress. What counts as harmful can be subjective and perceptions of harm may vary among stakeholders. We studied perspectives on the harmfulness of research events among adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board members. We found considerable variance. For example, adults with intellectual disability see exclusion from research as more harmful, but most psychosocial harms as less significant than others. All stakeholders agree that having someone else make the participation decision is harmful. Findings provide insights into the concept of harm and ethical research with adults with intellectual disability. PMID:28095059

  16. Is Safety in the Eye of the Beholder? Safeguards in Research With Adults With Intellectual Disability.

    Science.gov (United States)

    McDonald, Katherine E; Conroy, Nicole E; Kim, Carolyn I; LoBraico, Emily J; Prather, Ellis M; Olick, Robert S

    2016-12-01

    Human subjects research has a core commitment to participant well-being. This obligation is accentuated for once exploited populations such as adults with intellectual disability. Yet we know little about the public's views on appropriate safeguards for this population. We surveyed adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board (IRB) members to compare views on safeguards. We found many points of convergence of views, particularly for decision-making and participation. One trend is that adults with intellectual disability perceive greater safety in being engaged directly in recruitment, and recruitment by specific individuals. Researchers and IRB members need to consider community views to facilitate the safe and respectful inclusion of adults with intellectual disability.

  17. Genetic Testing in Intellectual Disability Psychiatry: Opinions and Practices of UK Child and Intellectual Disability Psychiatrists

    Science.gov (United States)

    Wolfe, Kate; Stueber, Kerstin; McQuillin, Andrew; Jichi, Fatima; Patch, Christine; Flinter, Frances; Strydom, André; Bass, Nick

    2018-01-01

    Background: An increasing number of genetic causes of intellectual disabilities (ID) are identifiable by clinical genetic testing, offering the prospect of bespoke patient management. However, little is known about the practices of psychiatrists and their views on genetic testing. Method: We undertook an online survey of 215 psychiatrists, who…

  18. Co-researching with people who have intellectual disabilities: insights from a national survey.

    Science.gov (United States)

    O'Brien, Patricia; McConkey, Roy; García-Iriarte, Edurne

    2014-01-01

    Inclusive research with people with intellectual disabilities is growing internationally but with few studies examining its feasibility. In undertaking a national study exploring what life was like in Ireland for people with intellectual disabilities, a community of practice was developed involving a core group of co-researchers: five people with intellectual disabilities, four university researchers and three service support staff. An additional cadre of 15 co-researchers with intellectual disabilities was recruited to undertake data gathering and analysis with 23 focus groups involving 168 participants. The research experience was documented through oral feedback, progress reports, minutes and a project review. The key learning is documented arising from the setting up of an inclusive advisory group and implementation of each of six research steps. The study demonstrates feasibility and the added value of university co-researchers recruiting and developing skills together with co-researchers with intellectual disabilities. Topics for further research and development are identified. This paper tells you about how people with intellectual disabilities worked with a group of university researchers. Both groups were called co-researchers and together they ran 23 focus groups across Ireland. People with intellectual disabilities talked about their lives and what could make them better. They said they needed to have a good place to live; a job; enough money; relationships; and acceptance as respected citizens. The university co-researchers wrote about what it was like doing research together and how people with intellectual disabilities joined the advisory group; decided on the questions; ran focus groups; and presented findings. Together they grew into a community of researchers where the university co-researchers shared their research skills and people with intellectual disabilities shared what it was like living with a disability. They both saw great value in

  19. Vision, spatial cognition and intellectual disability.

    Science.gov (United States)

    Giuliani, Fabienne; Schenk, Françoise

    2015-02-01

    Vision is the most synthetic sensory channel and it provides specific information about the relative position of distant landmarks during visual exploration. In this paper we propose that visual exploration, as assessed by the recording of eye movements, offers an original method to analyze spatial cognition and to reveal alternative adaptation strategies in people with intellectual disabilities (ID). Our general assumption is that eye movement exploration may simultaneously reveal whether, why, and how, compensatory strategies point to specific difficulties related to neurological symptoms. An understanding of these strategies will also help in the development of optimal rehabilitation procedures. Copyright © 2014 Elsevier Ltd. All rights reserved.

  20. Aerobic capacity of adults with intellectual disabilities

    Directory of Open Access Journals (Sweden)

    Krystyna Gawlik

    2016-12-01

    1. A large sample of the study population (30% female, 46,3% male showed very low levels of aerobic capacity. 2. Our investigations did not demonstrate a relationship between physical fitness and age or the degree of intellectual disability. Gender turned out to be a differentiating factor but only for the absolute PWC170 and VO2max. 3. The level of physical fitness was significantly related to somatic parameters including body mass, waist and hips circumference, percentage of body fat, BMI and WHR.

  1. Families' perceptions of the contribution of intellectual disability clinical nurse specialists in Ireland.

    Science.gov (United States)

    Doody, Owen; Slevin, Eamonn; Taggart, Laurence

    2018-01-01

    To explore families' perceptions of the contribution of clinical nurse specialists in intellectual disability nursing in Ireland. Clinical nurse specialists roles have developed over the years and are seen as complex and multifaceted, causing confusion, frustration and controversy. 2001 saw the formal introduction of clinical nurse specialists roles in Ireland across nursing including intellectual disability. A exploratory qualitative approach using semistructured one-to-one interviews with 10 family members regarding their perceptions of the clinical nurse specialists in intellectual disability. Data were audio-recorded, transcribed and analysed using Burnard's framework. Ethical approval was gained and access granted by service providers. The study highlights that intellectual disability clinical nurse specialists contribute and support care deliver across a range of areas, including personal caring, supporting and empowering families, liaison, education and leadership. Clinical nurse specialists have an important role and contribution in supporting families and clients, and Ireland is in a unique position to develop knowledge regarding specialist care for people with intellectual disability that can be shared nationally and internationally. Ireland is in a unique position to develop knowledge regarding specialist care for people with intellectual disability that can be shared and adapted by other healthcare professionals in other countries that do not have a specialised intellectual disability nurses. © 2017 John Wiley & Sons Ltd.

  2. Do Service Users with Intellectual Disabilities Want to Be Involved in the Risk Management Process? A Thematic Analysis

    Science.gov (United States)

    Kilcommons, Aoiffe M.; Withers, Paul; Moreno-Lopez, Agueda

    2012-01-01

    Background: Involving ID service users in risk decision making necessitates consideration of an individual's ability to assess the implications and associated risks and thus make an informed choice. This calls for research on service users' awareness and understanding of risk management (RM). Method: Thirteen people in a residential ID service who…

  3. Intellectual disability sport and Paralympic classification

    Directory of Open Access Journals (Sweden)

    Anna van Dijk

    2017-06-01

    Full Text Available Sometimes it might seem that elite disability sport, especially as represented by the Paralympic Movement, is only for athletes with an amputation, or a spinal cord injury, or cerebral palsied or blind athletes, rather than for athletes with an intellectual disability (ID. However, after we set out the various opportunities open to ID athletes, that offer different kinds of sporting engagement, we find interesting and alarming issues with respect to the elite competitive event offer for athletes with ID. In this paper, we discuss the following: the problem of inclusion, some concerns that arise in the classification of paralympic athletes such as self-declaration and eligibility, the open nature of ID sports competition, and the sport offer available for these athletes.

  4. Senior and Disabilities Services

    Science.gov (United States)

    State Employees Division of Senior and Disabilities Services DHSS State of Alaska Home Divisions and ; Assistance Senior Benefits Program Medicare Substance Abuse Treatment Alaska Tribal Child Welfare Compact ; Senior and Disabilities Services Page Content Director Duane Mayes photo image. Duane Mayes Director

  5. Teaching Reading for Students with Intellectual Disabilities: A Systematic Review

    Science.gov (United States)

    Alnahdi, Ghaleb Hamad

    2015-01-01

    A systematic review of the literature related to instructional strategies to improve reading skills for students with intellectual disabilities was conducted. Studies reviewed were within three categories; early reading approaches, comprehensive approaches, and one method approach. It was concluded that students with intellectual disabilities are…

  6. Students' Attitudes towards Individuals with an Intellectual Disability

    Science.gov (United States)

    Patel, Meera; Rose, John

    2014-01-01

    The aim of the study was to investigate attitudes held by a British student population towards individuals with an intellectual disability. Students participated in focus groups addressing their attitudes, behaviours and perceptions of individuals with an intellectual disability. Thematic analysis was the method used to identify emergent themes.…

  7. Intellectual Disability and Space: Critical Narratives of Exclusion

    Science.gov (United States)

    Gabel, Susan L.; Cohen, Carie J.; Kotel, Kathleen; Pearson, Holly

    2013-01-01

    The language of intellectual disability is rife with spatial terms. Students labeled with intellectual disability are "placed in" special education where they may be "self-contained," "segregated," "excluded," or "included." Conversations ensue about where to seat them, "next" to whom, and at what distance "from" the teacher and other students. In…

  8. Overweight and Obesity in Older People with Intellectual Disability

    Science.gov (United States)

    de Winter, C. F.; Bastiaanse, L. P.; Hilgenkamp, T. I. M.; Evenhuis, H. M.; Echteld, M. A.

    2012-01-01

    Overweight and obesity are major health problems associated with increased cardiovascular disease risk, which is not sufficiently studied in people with intellectual disability yet. The present study was part of the Healthy Ageing in Intellectual Disability (HA-ID) study. The aim of this study was to establish (1) the prevalence of overweight,…

  9. Physical Fitness and Fatness in Adolescents with Intellectual Disabilities

    Science.gov (United States)

    Salaun, Laureline; Berthouze-Aranda, Sophie E.

    2012-01-01

    Background: This study investigated health-related fitness in adolescents with intellectual disabilities and analysed the various performances in physical fitness tests according to degrees of obesity. Materials and Methods: Eighty-seven French intellectual disabilities adolescents (14.24 [plus or minus] 1.48 years) performed the EUROFIT physical…

  10. Measurement of Mood in Adolescents with Intellectual Disability

    Science.gov (United States)

    Argus, Geoffrey R.; Terry, Peter C.; Bramston, Paul; Dinsdale, Sarah L.

    2004-01-01

    To date, there has been limited research into mood responses among adolescents with intellectual disability. One reason for this is the absence of a reliable and valid measure for the assessment of mood among this population. The present study evaluated such a measure among a sample of 135 adolescents with mild intellectual disability. Results…

  11. Qualitative Study of Malnutrition in People with Intellectual Disabilities

    Science.gov (United States)

    Franssen, Janine J. L.; Maaskant, Marian A.; van Schrojenstein Lantman-de Valk, Henny M. J.

    2011-01-01

    The prevalence of underweight status is relatively high in persons with intellectual disabilities. However, it is not clear whether this is due to malnourishment. The authors sought to examine the awareness and knowledge of physicians, dieticians, and direct care staff regarding malnutrition in people with intellectual disabilities. They also…

  12. An Audit of the Irish National Intellectual Disability Database

    Science.gov (United States)

    Dodd, Philip; Craig, Sarah; Kelly, Fionnola; Guerin, Suzanne

    2010-01-01

    This study describes a national data audit of the National Intellectual Disability Database (NIDD). The NIDD is a national information system for intellectual disability (ID) for Ireland. The purpose of this audit was to assess the overall accuracy of information contained on the NIDD, as well as collecting qualitative information to support the…

  13. Stressful Social Interactions Experienced by Adults with Mild Intellectual Disability

    Science.gov (United States)

    Hartley, Sigan L.; MacLean, William E., Jr.

    2009-01-01

    Adults with intellectual disability are vulnerable to stressful social interactions. We determined frequency and severity of various stressful social interactions, identified the social partners in these interactions, and examined the specific interpersonal skill difficulties of 114 adults with mild intellectual disability. Participants'…

  14. Teaching Students with Intellectual Disabilities: Constructivism or Behaviorism?

    Science.gov (United States)

    Algahtani, Faris

    2017-01-01

    Many teaching strategies have been postulated over the past years by various scholars in an effort to enhance the education system among students with intellectual disabilities. There is much debate on the application of constructivist and behaviorist perspectives for teaching students with intellectual disabilities as addressed in this paper.…

  15. Effectiveness of Speech Therapy in Adults with Intellectual Disabilities

    Science.gov (United States)

    Terband, Hayo; Coppens-Hofman, Marjolein C.; Reffeltrath, Maaike; Maassen, Ben A. M.

    2018-01-01

    Background: This study investigated the effect of speech therapy in a heterogeneous group of adults with intellectual disability. Method: Thirty-six adults with mild and moderate intellectual disabilities (IQs 40-70; age 18-40 years) with reported poor speech intelligibility received tailored training in articulation and listening skills delivered…

  16. Parenting Training for Intellectually Disabled Parents: A Cochrane Systematic Review

    Science.gov (United States)

    Coren, Esther; Thomae, Manuela; Hutchfield, Jemeela

    2011-01-01

    Objectives: This article presents a Cochrane/Campbell systematic review of the evidence on the effect of parent training to support the parenting of parents with intellectual disabilities. Method: Randomized controlled trials (RCTs) comparing parent training interventions for parents with intellectual disability with usual care or with a control…

  17. What Is Right? Ethics in Intellectual Disabilities Research

    Science.gov (United States)

    McDonald, Katherine E.; Kidney, Colleen A.

    2012-01-01

    There are important benefits to including adults with intellectual disabilities in research. Calls for their increased participation in research co-occur with notable discussion about how to conduct ethically strong research with adults with intellectual disabilities, a population widely considered vulnerable in the context of research. The…

  18. The Siblings Relationship of Adolescents with and without Intellectual Disabilities

    Science.gov (United States)

    Begum, Gazi; Blacher, Jan

    2011-01-01

    The sibling relationship of adolescents with and without intellectual disabilities was examined. Participants were 70 sibling dyads--each dyad was comprised of one 12-year old adolescent with (N = 23) or without intellectual disabilities (N = 47). Sibling relationships, behavior problems, and social skills were assessed using mother reports.…

  19. [Community trajectories of mentally ill and intellectually disabled young people].

    Science.gov (United States)

    Fleury, Marie-Josée; Grenier, Guy

    2013-01-01

    In the context of reforms in the field of disability, this study documents the trajectories and mechanisms of support for young people with mental illness or intellectual disability or pervasive developmental disorders, during the teen-adult life transition period; andfactorsfostering or impeding this transition for their maintenance in an everyday environment, particularly in SESSAD (special education and home care service) and the SAMSAH/ SPAC (medico-social support for adults with disabilities/support services in social life). This study was conducted in the French department of Seine-et-Marne. It was supported by a mixed call for tenders, in which 77 respondents (professionals, families and users), and 26 organizations were consulted. The study shows that few young adults in SAMSAH/SPAC programmes are derived from SESSAD, and they encounter major difficulties living in an everyday environment, particularly during the transition period. Clinical or socio-economic factors related to the profiles of users or healthcare service organization facilitate or hinder the inclusion of young people in an everyday environment. Support for users was also often limited to followup over a suboptimal period, and was hampered by insufficient networking within the regional healthcare system. On the other hand, empowerment of users and their optimal inclusion in an everyday environment, as founding principles of the reform, constitute major action priorities for healthcare structures. Strengthening services for young people (16-25 years), including integration strategies, is recommended in order to establish an integrated network of services in the field of disability.

  20. Expanding the genetic heterogeneity of intellectual disability.

    Science.gov (United States)

    Anazi, Shams; Maddirevula, Sateesh; Salpietro, Vincenzo; Asi, Yasmine T; Alsahli, Saud; Alhashem, Amal; Shamseldin, Hanan E; AlZahrani, Fatema; Patel, Nisha; Ibrahim, Niema; Abdulwahab, Firdous M; Hashem, Mais; Alhashmi, Nadia; Al Murshedi, Fathiya; Al Kindy, Adila; Alshaer, Ahmad; Rumayyan, Ahmed; Al Tala, Saeed; Kurdi, Wesam; Alsaman, Abdulaziz; Alasmari, Ali; Banu, Selina; Sultan, Tipu; Saleh, Mohammed M; Alkuraya, Hisham; Salih, Mustafa A; Aldhalaan, Hesham; Ben-Omran, Tawfeg; Al Musafri, Fatima; Ali, Rehab; Suleiman, Jehan; Tabarki, Brahim; El-Hattab, Ayman W; Bupp, Caleb; Alfadhel, Majid; Al Tassan, Nada; Monies, Dorota; Arold, Stefan T; Abouelhoda, Mohamed; Lashley, Tammaryn; Houlden, Henry; Faqeih, Eissa; Alkuraya, Fowzan S

    2017-11-01

    Intellectual disability (ID) is a common morbid condition with a wide range of etiologies. The list of monogenic forms of ID has increased rapidly in recent years thanks to the implementation of genomic sequencing techniques. In this study, we describe the phenotypic and genetic findings of 68 families (105 patients) all with novel ID-related variants. In addition to established ID genes, including ones for which we describe unusual mutational mechanism, some of these variants represent the first confirmatory disease-gene links following previous reports (TRAK1, GTF3C3, SPTBN4 and NKX6-2), some of which were based on single families. Furthermore, we describe novel variants in 14 genes that we propose as novel candidates (ANKHD1, ASTN2, ATP13A1, FMO4, MADD, MFSD11, NCKAP1, NFASC, PCDHGA10, PPP1R21, SLC12A2, SLK, STK32C and ZFAT). We highlight MADD and PCDHGA10 as particularly compelling candidates in which we identified biallelic likely deleterious variants in two independent ID families each. We also highlight NCKAP1 as another compelling candidate in a large family with autosomal dominant mild intellectual disability that fully segregates with a heterozygous truncating variant. The candidacy of NCKAP1 is further supported by its biological function, and our demonstration of relevant expression in human brain. Our study expands the locus and allelic heterogeneity of ID and demonstrates the power of positional mapping to reveal unusual mutational mechanisms.

  1. Expanding the genetic heterogeneity of intellectual disability

    KAUST Repository

    Anazi, Shams

    2017-09-22

    Intellectual disability (ID) is a common morbid condition with a wide range of etiologies. The list of monogenic forms of ID has increased rapidly in recent years thanks to the implementation of genomic sequencing techniques. In this study, we describe the phenotypic and genetic findings of 68 families (105 patients) all with novel ID-related variants. In addition to established ID genes, including ones for which we describe unusual mutational mechanism, some of these variants represent the first confirmatory disease-gene links following previous reports (TRAK1, GTF3C3, SPTBN4 and NKX6-2), some of which were based on single families. Furthermore, we describe novel variants in 14 genes that we propose as novel candidates (ANKHD1, ASTN2, ATP13A1, FMO4, MADD, MFSD11, NCKAP1, NFASC, PCDHGA10, PPP1R21, SLC12A2, SLK, STK32C and ZFAT). We highlight MADD and PCDHGA10 as particularly compelling candidates in which we identified biallelic likely deleterious variants in two independent ID families each. We also highlight NCKAP1 as another compelling candidate in a large family with autosomal dominant mild intellectual disability that fully segregates with a heterozygous truncating variant. The candidacy of NCKAP1 is further supported by its biological function, and our demonstration of relevant expression in human brain. Our study expands the locus and allelic heterogeneity of ID and demonstrates the power of positional mapping to reveal unusual mutational mechanisms.

  2. Expanding the genetic heterogeneity of intellectual disability

    KAUST Repository

    Anazi, Shams; Maddirevula, Sateesh; Salpietro, Vincenzo; Asi, Yasmine T.; Alsahli, Saud; Alhashem, Amal; Shamseldin, Hanan E.; AlZahrani, Fatema; Patel, Nisha; Ibrahim, Niema; Abdulwahab, Firdous M.; Hashem, Mais; Alhashmi, Nadia; Al Murshedi, Fathiya; Al Kindy, Adila; Alshaer, Ahmad; Rumayyan, Ahmed; Al Tala, Saeed; Kurdi, Wesam; Alsaman, Abdulaziz; Alasmari, Ali; Banu, Selina; Sultan, Tipu; Saleh, Mohammed M.; Alkuraya, Hisham; Salih, Mustafa A.; Aldhalaan, Hesham; Ben-Omran, Tawfeg; Al Musafri, Fatima; Ali, Rehab; Suleiman, Jehan; Tabarki, Brahim; El-Hattab, Ayman W.; Bupp, Caleb; Alfadhel, Majid; Al Tassan, Nada; Monies, Dorota; Arold, Stefan T.; Abouelhoda, Mohamed; Lashley, Tammaryn; Houlden, Henry; Faqeih, Eissa; Alkuraya, Fowzan S.

    2017-01-01

    Intellectual disability (ID) is a common morbid condition with a wide range of etiologies. The list of monogenic forms of ID has increased rapidly in recent years thanks to the implementation of genomic sequencing techniques. In this study, we describe the phenotypic and genetic findings of 68 families (105 patients) all with novel ID-related variants. In addition to established ID genes, including ones for which we describe unusual mutational mechanism, some of these variants represent the first confirmatory disease-gene links following previous reports (TRAK1, GTF3C3, SPTBN4 and NKX6-2), some of which were based on single families. Furthermore, we describe novel variants in 14 genes that we propose as novel candidates (ANKHD1, ASTN2, ATP13A1, FMO4, MADD, MFSD11, NCKAP1, NFASC, PCDHGA10, PPP1R21, SLC12A2, SLK, STK32C and ZFAT). We highlight MADD and PCDHGA10 as particularly compelling candidates in which we identified biallelic likely deleterious variants in two independent ID families each. We also highlight NCKAP1 as another compelling candidate in a large family with autosomal dominant mild intellectual disability that fully segregates with a heterozygous truncating variant. The candidacy of NCKAP1 is further supported by its biological function, and our demonstration of relevant expression in human brain. Our study expands the locus and allelic heterogeneity of ID and demonstrates the power of positional mapping to reveal unusual mutational mechanisms.

  3. New innovations: therapeutic opportunities for intellectual disabilities.

    Science.gov (United States)

    Picker, Jonathan D; Walsh, Christopher A

    2013-09-01

    Intellectual disability is common and is associated with significant morbidity. Until the latter half of the 20th century, there were no efficacious treatments. Following initial breakthroughs associated with newborn screening and metabolic corrections, little progress was made until recently. With improved understanding of genetic and cellular mechanisms, novel treatment options are beginning to appear for a number of specific conditions. Fragile X and tuberous sclerosis offer paradigms for the development of targeted therapeutics, but advances in understanding of other disorders such as Down syndrome and Rett syndrome, for example, are also resulting in promising treatment directions. In addition, better understanding of the underlying neurobiology is leading to novel developments in enzyme replacement for storage disorders and adjunctive therapies for metabolic disorders, as well as potentially more generalizable approaches that target dysfunctional cell regulation via RNA and chromatin. Physiologic therapies, including deep brain stimulation and transcranial magnetic stimulation, offer yet another direction to enhance cognitive functioning. Current options and evolving opportunities for the intellectually disabled are reviewed and exemplified. Copyright © 2013 American Neurological Association.

  4. KEMANDIRIAN ANAK INTELLECTUAL DISABILITY TERKAIT DENGAN TINGKAT KEMATANGAN SOSIAL

    OpenAIRE

    Muh Khoironi Fadli; Dewi Retno Pamungkas; Retno Sumiyarini

    2014-01-01

    Background:Intellectual disability is disorder of intellectual function that is significantly below averagewith various deficits in adaptive function, such as taking care of oneself or occupational activities thatemerge before the age of 18 years old. One characteristic of intellectuallydisabled children in adaptivefunction is social maturity disorder. Children with intellectual disability haveproblem in social maturityandlimitation in fulfilling needs in daily activities.Objective:To identif...

  5. BEHAVIORAL PROBLEMS IN CHILDREN WITH MILD AND MODERATE INTELLECTUAL DISABILITY

    Directory of Open Access Journals (Sweden)

    Vesna KOSTIKJ-IVANOVIKJ

    2009-06-01

    Full Text Available Large number of children with intellectual disabilities encounters behavioral problems or show disharmonic behavior within the family, at school and in the community. Researches show that 30-50% of persons with intellectual disabilities have some behavioral problems. The behavior of children with intellectual disabilities depends on many factors: age of the child, level of intellectual disability, cognitive potentials, level of psycho-physical development, differentiation of emotions, communicative skills, social status and conditions of the environment (in the family and the wider community where the child lives. The influence of some of these factors has been analyzed by this research. There are many ins truments (questionnaires, scales that evaluate behavior of persons with intellectual disabilities, and reveal problems that these persons have in their psychosocial development and social life. This research used the AAMD Adaptive behavior Scale (part II and Scale for evaluating behavior of the child in school by authors Bojanin, Savanovikj.

  6. Intellectual developmental disorders: towards a new name, definition and framework for "mental retardation/intellectual disability" in ICD-11.

    Science.gov (United States)

    Salvador-Carulla, Luis; Reed, Geoffrey M; Vaez-Azizi, Leila M; Cooper, Sally-Ann; Martinez-Leal, Rafael; Bertelli, Marco; Adnams, Colleen; Cooray, Sherva; Deb, Shoumitro; Akoury-Dirani, Leyla; Girimaji, Satish Chandra; Katz, Gregorio; Kwok, Henry; Luckasson, Ruth; Simeonsson, Rune; Walsh, Carolyn; Munir, Kemir; Saxena, Shekhar

    2011-10-01

    Although "intellectual disability" has widely replaced the term "mental retardation", the debate as to whether this entity should be conceptualized as a health condition or as a disability has intensified as the revision of the World Health Organization (WHO)'s International Classification of Diseases (ICD) advances. Defining intellectual disability as a health condition is central to retaining it in ICD, with significant implications for health policy and access to health services. This paper presents the consensus reached to date by the WHO ICD Working Group on the Classification of Intellectual Disabilities. Literature reviews were conducted and a mixed qualitative approach was followed in a series of meetings to produce consensus-based recommendations combining prior expert knowledge and available evidence. The Working Group proposes replacing mental retardation with intellectual developmental disorders, defined as "a group of developmental conditions characterized by significant impairment of cognitive functions, which are associated with limitations of learning, adaptive behaviour and skills". The Working Group further advises that intellectual developmental disorders be incorporated in the larger grouping (parent category) of neurodevelopmental disorders, that current subcategories based on clinical severity (i.e., mild, moderate, severe, profound) be continued, and that problem behaviours be removed from the core classification structure of intellectual developmental disorders and instead described as associated features.

  7. How to Facilitate Transition to Adulthood? Innovative Solutions from Parents of Young Adults with Profound Intellectual Disability

    Science.gov (United States)

    Gauthier-Boudreault, Camille; Couture, Mélanie; Gallagher, Frances

    2018-01-01

    Background: At age 21, access to specialised services for youth with profound intellectual disability is reduced. Few studies have focused on parents' views concerning potential solutions to ease the transition to adulthood, and most existing solutions target young adults with less severe intellectual disability. The aim of this study is to…

  8. Adults with Mild Intellectual Disabilities' Experiences of Mental Health Problems: A Qualitative Study Using Interpretative Phenomenological Analysis

    Science.gov (United States)

    Tomlinson, Samantha; Hewitt, Olivia

    2018-01-01

    Research addressing people with intellectual disabilities' experiences of mental health problems has mainly focused on the perspectives of family members or professionals, or has been driven by service evaluation. Few studies have sought the views of people with intellectual disabilities about their own mental health experiences. This study…

  9. The Experiences of Staff Who Support People with Intellectual Disability on Issues about Death, Dying and Bereavement: A Metasynthesis

    Science.gov (United States)

    Lord, Ailsa J.; Field, Stephen; Smith, Ian C.

    2017-01-01

    Background: Historically, people with intellectual disabilities have tended to be excluded from knowing about death, dying and bereavement. Staff in intellectual disability services can play a valuable role in improving understanding of these issues in those they support. This qualitative metasynthesis aimed to understand the experiences of staff…

  10. Development and Psychometric Properties of an Assessment for Persons with Intellectual Disability--The InterRAI ID

    Science.gov (United States)

    Martin, Lynn; Hirdes, John P.; Fries, Brant E.; Smith, Trevor F.

    2007-01-01

    This paper describes the development of the interRAI-Intellectual Disability (interRAI ID), a comprehensive instrument that assesses all key domains of interest to service providers relative to a person with an intellectual disability (ID). The authors report on the reliability and validity of embedded scales for cognition, self-care, aggression,…

  11. Employed Carers' Empathy towards People with Intellectual Disabilities: The Development of a New Measure and Some Initial Theory

    Science.gov (United States)

    Collins, Kirsten; Gratton, Caroline; Heneage, Celia; Dagnan, Dave

    2017-01-01

    Background: This study aimed to develop a self-report measure of paid caregivers' empathy towards people with intellectual disabilities. Materials and Methods: Following questionnaire development, 194 staff working in services for people with intellectual disabilities completed self-report questionnaires, including the new empathy measure. The…

  12. Future Need of Ageing People with an Intellectual Disability in the Republic of Ireland: Lessons Learned from the Literature

    Science.gov (United States)

    Doody, Catriona M.; Markey, Kathleen; Doody, Owen

    2013-01-01

    People with an intellectual disability are living longer, and the numbers continue to rise. Ireland has and is seeing a dramatic change in the age pro?le of clients and the support services they require. While Ireland had speci?cally trained nurses in intellectual disability, they predominately work in residential settings. This can be seen as…

  13. Autonomy Support in People with Mild-to-Borderline Intellectual Disability: Testing the Health Care Climate Questionnaire-Intellectual Disability

    Science.gov (United States)

    Frielink, Noud; Schuengel, Carlo; Embregts, Petri J. C. M.

    2018-01-01

    Background: Autonomy support in people with intellectual disability (ID) is an important yet understudied topic. Psychometrically sound instruments are lacking. This study tested the factor structure and reliability of an instrument for assessing the extent people with intellectual disability perceive their support staff as autonomy supportive.…

  14. Epilepsy in Children with Intellectual Disability in Bosnia and Herzegovina: Effects of Sex, Level and Etiology of Intellectual Disability

    Science.gov (United States)

    Memisevic, Haris; Sinanovic, Osman

    2009-01-01

    The purpose of this study was to examine the occurrence of epilepsy in children with intellectual disability. An additional goal was to determine if there were statistical differences in the occurrence of epilepsy related to the sex, level and etiology of intellectual disability of children. The sample consisted of 167 children with intellectual…

  15. Everyday Life of Young Adults with Intellectual Disabilities: Inclusionary and Exclusionary Processes among Young Adults of Parents with Intellectual Disability

    Science.gov (United States)

    Starke, Mikaela

    2013-01-01

    Ten young adults with an intellectual disability whose parents, too, have an intellectual disability were interviewed and completed questionnaires for this exploratory study aimed at charting their experiences of everyday life. Most of the participants reported high life satisfaction, especially with the domains of friends, leisure time, and…

  16. Friendships and Intimate Relationships among People with Intellectual Disabilities: A Thematic Synthesis.

    Science.gov (United States)

    Fulford, Casey; Cobigo, Virginie

    2018-01-01

    The purpose of this thematic synthesis was to review qualitative studies on perspectives of persons with intellectual disabilities regarding friendships and intimate relationships. A literature search was conducted, including studies published between 2004 and 2014, involving participants 14 years of age or older, who had intellectual disabilities, and participated in focus groups or interviews. Eighteen studies were included. Three master themes were identified: (i) How do I know someone is my friend? (ii) How do I know someone is my boyfriend or girlfriend? and (iii) What helps and hinders relationships? Understanding how people with intellectual disabilities describe relationships, and being aware of factors that support and impede relationships, will aid stakeholders in developing training, policies, programmes and services. Knowledge translation of research that focuses on strategies aimed at supporting relationships is crucial to affect change in applied settings and improve quality of life for persons with intellectual disabilities. © 2016 John Wiley & Sons Ltd.

  17. Intellectual Disabilities, Challenging Behaviour and Referral Texts: A Critical Discourse Analysis

    Science.gov (United States)

    Nunkoosing, Karl; Haydon-Laurelut, Mark

    2011-01-01

    The texts of referrals written by workers in residential services for people with learning difficulties constitute sites where contemporary discourses of intellectual disabilities are being constructed. This paper uses Critical Discourse Analysis to examine referrals made to a Community Learning Disability Team (CLDT). The study finds referral…

  18. Family Care of People with Intellectual Disability in Rural China: A Magnified Responsibility

    Science.gov (United States)

    Pan, Lu; Ye, Jingzhong

    2015-01-01

    Background: Welfare for the disabled is becoming an important issue in China and care for people with intellectual disability is challenging because of the inadequacies in formal support and the social service system. Material and Method: Based on ethnographic research in two villages in North China, this paper analyses the dilemmas of family care…

  19. The role of learning disability nurses in promoting cervical screening uptake in women with intellectual disabilities: A qualitative study.

    Science.gov (United States)

    Lloyd, Jennifer L; Coulson, Neil S

    2014-06-01

    Research suggests that the uptake of cervical screening by women with intellectual disabilities (commonly known as learning disabilities within UK policy frameworks, practice areas and health services) is poor compared to women without intellectual disabilities. The present study explored learning disability nurses' experiences of supporting women with intellectual disabilities to access cervical screening in order to examine their role in promoting attendance and elucidate potential barriers and facilitators to uptake. Ten participants recruited from a specialist learning disability service completed a semi-structured interview and data were analysed using experiential thematic analysis. Identified individual barriers included limited health literacy, negative attitudes and beliefs and competing demands; barriers attributed to primary care professionals included time pressures, limited exposure to people with intellectual disabilities and lack of appropriate knowledge, attitudes and skills. Attendance at cervical screening was facilitated by prolonged preparation work undertaken by learning disability nurses, helpful clinical behaviours in the primary care context and effective joint working. © The Author(s) 2014.

  20. On self-identity: the process of inclusion of individuals with intellectual disabilities in the military.

    Science.gov (United States)

    Werner, Shirli; Hochman, Yael

    2018-02-23

    Identity development among individuals with disabilities may depend on their being included in central institutions in society. The centrality of the military in Israeli society makes it a highly important setting for inclusion and identity development. We examined the self-identity of young adults with intellectual disabilities who serve in the "Equal in Uniform" project. Forty-nine interviews were conducted with 31 individuals with intellectual disabilities. Findings showed that military service helped develop the identity of soldiers, which enhanced their self-efficacy. Participants described their participation in the military as an opportunity to take an active part in socially valued roles. Findings are discussed with reference to the effect of the project on the self-identity of individuals with intellectual disabilities. The meaning of successfully serving in socially valued roles for self-efficacy is discussed. Implications for rehabilitation Completing socially valued roles leads to greater self-efficacy, enhanced self-esteem and greater psychological well-being among individuals with intellectual disabilities. Inclusion of individuals with intellectual disabilities within a central community setting (specifically the military) allows them to deal with issues of identity development, as it does for other young people without intellectual disabilities. Receiving ongoing positive input from others for one's abilities and success is a conducive factor in positive identity formation.

  1. The Intersection of Intellectual Disability and Dementia: Report of The International Summit on Intellectual Disability and Dementia.

    Science.gov (United States)

    Watchman, Karen; Janicki, Matthew P

    2017-11-02

    An International Summit on Intellectual Disability and Dementia, held in Glasgow, Scotland (October 13-14, 2016), drew individuals and representatives of numerous international and national organizations and universities with a stake in issues affecting adults with intellectual disability (ID) affected by dementia. A discussion-based consensus process was used to examine and produce a series of topical reports examining three main conceptual areas: (a) human rights and personal resources (applications of the Convention for Rights of People with Disabilities and human rights to societal inclusion, and perspectives of persons with ID), (b) individualized services and clinical supports (advancing and advanced dementia, post-diagnostic supports, community supports and services, dementia-capable care practice, and end-of-life care practices), and (c) advocacy, public impact, family caregiver issues (nomenclature/terminology, inclusion of persons with ID in national plans, and family caregiver issues). Outcomes included recommendations incorporated into a series of publications and topical summary bulletins designed to be international resources, practice guidelines, and the impetus for planning and advocacy with, and on behalf of, people with ID affected by dementia, as well as their families. The general themes of the conceptual areas are discussed and the main recommendations are associated with three primary concerns. © The Author 2017. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  2. Is There Really a Difference? Distinguishing Mild Intellectual Disability from "Similar" Disability Categories

    Science.gov (United States)

    Bouck, Emily C.; Satsangi, Rajiv

    2015-01-01

    Students with mild intellectual disability generally garner less individual attention in research, as they are often aggregated with students with moderate and severe intellectual disability or students with other high incidence disabilities. This study used the National Longitudinal Transition Study-2 (NLTS2) to look at the personal…

  3. Human rights and intellectual disabilities in an era of 'choice'.

    Science.gov (United States)

    Fyson, R; Cromby, J

    2013-12-01

    Efforts to uphold and promote the human rights of people with intellectual disabilities (ID) are being affected by the increasing emphasis on 'choice' in the delivery of social care services. While rights presume subjects or selves to whom they apply, there is a disconnect between the subjects presumed within human rights frameworks and the variable capacities of a heterogeneous ID population. This disconnect is amplified by choice discourses which characterise current service provision based upon neoliberal ideologies. Conceptual assumptions and theoretical positions associated with human rights in relation to people with ID are critically examined. The analysis results in an argument that current conceptualisations of personhood in relation to human rights exclude people with ID. The adverse effects of this exclusion are exacerbated within services which emphasise the permissive rights associated with a neoliberal agenda of 'choice' over protective rights. In order to ensure that the human rights of people with ID are upheld, neoliberal emphases on choice need to be tempered and a more nuanced and inclusive notion of personhood in relation to universal human rights needs to be adopted. © 2012 The Authors. Journal of Intellectual Disability Research © 2012 John Wiley & Sons Ltd, MENCAP & IASSID.

  4. Genetics of intellectual disability in consanguineous families.

    Science.gov (United States)

    Hu, Hao; Kahrizi, Kimia; Musante, Luciana; Fattahi, Zohreh; Herwig, Ralf; Hosseini, Masoumeh; Oppitz, Cornelia; Abedini, Seyedeh Sedigheh; Suckow, Vanessa; Larti, Farzaneh; Beheshtian, Maryam; Lipkowitz, Bettina; Akhtarkhavari, Tara; Mehvari, Sepideh; Otto, Sabine; Mohseni, Marzieh; Arzhangi, Sanaz; Jamali, Payman; Mojahedi, Faezeh; Taghdiri, Maryam; Papari, Elaheh; Soltani Banavandi, Mohammad Javad; Akbari, Saeide; Tonekaboni, Seyed Hassan; Dehghani, Hossein; Ebrahimpour, Mohammad Reza; Bader, Ingrid; Davarnia, Behzad; Cohen, Monika; Khodaei, Hossein; Albrecht, Beate; Azimi, Sarah; Zirn, Birgit; Bastami, Milad; Wieczorek, Dagmar; Bahrami, Gholamreza; Keleman, Krystyna; Vahid, Leila Nouri; Tzschach, Andreas; Gärtner, Jutta; Gillessen-Kaesbach, Gabriele; Varaghchi, Jamileh Rezazadeh; Timmermann, Bernd; Pourfatemi, Fatemeh; Jankhah, Aria; Chen, Wei; Nikuei, Pooneh; Kalscheuer, Vera M; Oladnabi, Morteza; Wienker, Thomas F; Ropers, Hans-Hilger; Najmabadi, Hossein

    2018-01-04

    Autosomal recessive (AR) gene defects are the leading genetic cause of intellectual disability (ID) in countries with frequent parental consanguinity, which account for about 1/7th of the world population. Yet, compared to autosomal dominant de novo mutations, which are the predominant cause of ID in Western countries, the identification of AR-ID genes has lagged behind. Here, we report on whole exome and whole genome sequencing in 404 consanguineous predominantly Iranian families with two or more affected offspring. In 219 of these, we found likely causative variants, involving 77 known and 77 novel AR-ID (candidate) genes, 21 X-linked genes, as well as 9 genes previously implicated in diseases other than ID. This study, the largest of its kind published to date, illustrates that high-throughput DNA sequencing in consanguineous families is a superior strategy for elucidating the thousands of hitherto unknown gene defects underlying AR-ID, and it sheds light on their prevalence.

  5. A critical appraisal of Western Cape Forum for Intellectual Disability ...

    African Journals Online (AJOL)

    The 2011 the Western Cape Forum for Intellectual Disability v Government of The Republic of South Africa case flagged a lot of issues faced by persons with disabilities relating to access to education in South Africa. The case tackled certain perceptions about the ineducability of persons with profound and severe disability ...

  6. Nurses' experience of caring for people with intellectual disability and dementia.

    Science.gov (United States)

    Cleary, Josephine; Doody, Owen

    2017-03-01

    To explore nurses' experiences of caring for older people with intellectual disability and dementia. Ageing and dementia prevalence is increasing along with the life expectancy of people with intellectual disability. As a population group, people with intellectual disability have a high prevalence of dementia, which is higher within the subpopulation of Down syndrome. People with intellectual disability live in residential care, community or residential settings, and nurses are required to adapt their practices to meet the changed needs of the individual. A qualitative Husserlian descriptive phenomenological methodology facilitated the researcher to become absorbed in the quintessence of meaning and explore nurses' experience of working with older people with intellectual disability and dementia. Ethical approval was obtained, and data were collected utilising semistructured interviews (n = 11). Interviews were transcribed and analysed using Colaizzi's framework for data analysis. Three key themes were identified: 'knowledge of dementia', 'person-centred care' and 'transitioning within the service'. The study highlights the need for proactive planning, life story books of the patient, and funding to support client and staff. Overall, the study highlights the importance of knowing the person, supporting the individual and recognising presenting behaviours as outside the control of the individual. This article presents the experiences of nurses caring for the older person with intellectual disability and dementia. Transitions are often very difficult for both the person and their peers, and they experience benefit from the efforts of a multidisciplinary team facilitating a person-centred approach. © 2016 John Wiley & Sons Ltd.

  7. Impact of Medicaid Managed Care on Illinois's Acute Health Services Expenditures for Adults with Intellectual and Developmental Disabilities

    Science.gov (United States)

    Yamaki, Kiyoshi; Wing, Coady; Mitchell, Dale; Owen, Randall; Heller, Tamar

    2018-01-01

    States have increasingly transitioned Medicaid enrollees with disabilities from fee-for-service (FFS) to Medicaid Managed Care (MMC), intending to reduce state Medicaid spending and to provide better access to health services. Yet, previous studies on the impact of MMC are limited and findings are inconsistent. We analyzed the impact of MMC on…

  8. Ageing of people with an intellectual disability: Effective training for frontline workers

    OpenAIRE

    Adrienne McGhee; Pat Dorsett

    2011-01-01

    Abstract While the attainment of late life represents a significant achievement for people with an intellectual disability, increased life expectancy has resulted in growing concerns about the extent to which disability service providers are ready to meet the changing needs of increasing numbers of older people and facilitate their ongoing social inclusion. Training of frontline disability staff is widely accepted as an effective strategy for increasing organisational capacity to contribu...

  9. Intellectual disability and impact on oral health: a paired study.

    Science.gov (United States)

    Oliveira, Juliana Santos; Prado Júnior, Raimundo Rosendo; de Sousa Lima, Kássio Rafael; de Oliveira Amaral, Heylane; Moita Neto, José Machado; Mendes, Regina Ferraz

    2013-01-01

    The objective was to assess the oral health status, the treatment needed, and the type of dental health services access of intellectually disabled (ID) subjects in Teresina, Brazil. The sample consisted of 103 ID subjects matriculated in centers for special needs people and 103 siblings. Results were analyzed using paired t-test, chi-square test, and odds ratio. ID subjects had fair (63.1%; p siblings had a good oral hygiene (n = 103 [55.3%]; p siblings. Thirty percent of ID subjects had never received dental treatment and had difficulty accessing public health services. Their treatment needs were, therefore, higher than non-ID subjects. The access to oral health services was unsatisfactory, thus it is important to implement educational and health promotion inclusion policies for people with ID. ©2013 Special Care Dentistry Association and Wiley Periodicals, Inc.

  10. Crime and victimisation in people with intellectual disability: a case linkage study.

    Science.gov (United States)

    Fogden, Billy C; Thomas, Stuart D M; Daffern, Michael; Ogloff, James R P

    2016-05-28

    Studies have suggested that people with intellectual disability are disproportionately involved in crime both as perpetrators and victims. A case linkage design used three Australian contact-level databases, from disability services, public mental health services and police records. Rates of contact, and official records of victimisation and criminal charges were compared to those in a community sample without intellectual disability. Although people with intellectual disability were significantly less likely to have an official record of victimisation and offending overall, their rates of violent and sexual victimisation and offending were significantly higher. The presence of comorbid mental illness considerably increased the likelihood of victimisation and offending; several sex differences were also noted. People with intellectual disability are at increased risk for both violent and sexual victimisation and offending. The presence of comorbid mental illness aggravates the risk of offending and victimisation. Future research should focus on a more nuanced exploration of the risks associated with intellectual disability and specific mental disorders and related indices of complexity.

  11. Health promotion for people with intellectual disabilities - A concept analysis.

    Science.gov (United States)

    Roll, Anne E

    2018-03-01

    Whereas 'health promotion' is a well-known concept for healthcare professionals, the concept of 'health promotion for people with intellectual disabilities' and its unique associated challenges are not well understood. This article provides a systematic analysis of how health promotion is being conceptualised for people with intellectual disabilities and how health promotion can work best in the light of this group's specific needs and limitations. Rodgers' evolutionary concept analysis. MEDLINE, PsycINFO, CINAHL and SocINDEX were searched using the search terms 'health promotion', 'people with intellectual disabilities' and 'developmental disabilities'. This review includes studies published between 1992 and 2014. A total of 52 articles were included. Health promotion for people intellectual disabilities, as discussed in the literature, focuses on four aspects, namely supporting a healthy lifestyle, providing health education, involving supporters and being person-centred. Antecedents of the concept 'health promotion for people with intellectual disabilities' were healthcare access and sensitised healthcare providers. The outcomes were improved health, being empowered, enhanced quality of life and reduced health disparities. This analysis provides a solid foundation for healthcare stakeholders' planning, implementing and evaluating health-promotion activities for people with intellectual disabilities at the policy level and in the community. © 2017 Nordic College of Caring Science.

  12. The Relation Between Intellectual Functioning and Adaptive Behavior in the Diagnosis of Intellectual Disability.

    Science.gov (United States)

    Tassé, Marc J; Luckasson, Ruth; Schalock, Robert L

    2016-12-01

    Intellectual disability originates during the developmental period and is characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. In this article, we present a brief history of the diagnostic criteria of intellectual disability for both the DSM-5 and AAIDD. The article also (a) provides an update of the understanding of adaptive behavior, (b) dispels two thinking errors regarding mistaken temporal or causal link between intellectual functioning and adaptive behavior, (c) explains that there is a strong correlational, but no causative, relation between intellectual functioning and adaptive behavior, and (d) asserts that once a question of determining intellectual disability is raised, both intellectual functioning and adaptive behavior are assessed and considered jointly and weighed equally in the diagnosis of intellectual disability. We discuss the problems created by an inaccurate statement that appears in the DSM-5 regarding a causal link between deficits in intellectual functioning and adaptive behavior and propose an immediate revision to remove this erroneous and confounding statement.

  13. Genetics Home Reference: SYNGAP1-related intellectual disability

    Science.gov (United States)

    ... intellectual disability develops epilepsy, and about half have autism spectrum disorder . Related Information What does it mean if a disorder seems to run in my family? What is the prognosis of a genetic condition? ...

  14. Foundations of reading comprehension in children with intellectual disabilities

    NARCIS (Netherlands)

    Wingerden-Fontein, E.G. van; Segers, P.C.J.; Balkom, L.J.M. van; Verhoeven, L.T.W.

    2017-01-01

    Background Knowledge about predictors for reading comprehension in children with intellectual disabilities (ID) is still fragmented. Aims This study compared reading comprehension, word decoding, listening comprehension, and reading related linguistic and cognitive precursor measures in children

  15. Intellectual disability, oncogenes and tumour suppressor genes: the ...

    Indian Academy of Sciences (India)

    Identifying pathogenic copy number variations (CNV) involved in genomic disorders ... pathogenicity in the diagnosis of patients with intellectual disability, the ... tein has an essential role in the developing nervous system for the correct timing ...

  16. Genomic imbalance in subjects with idiopathic intellectual disability ...

    Indian Academy of Sciences (India)

    Department of Human Genetics, Sri Ramachandra University, Chennai 600 116, India. [Mohan S., Venkatesan ... Intellectual disability (ID) is a complex disorder with hetero- geneous aetiology. .... The ratios are tabulated on the right. Table 2.

  17. Intellectually disabled students’ conceptions concerning the earth and heavenly bodies

    Directory of Open Access Journals (Sweden)

    Engin Baysen

    2014-08-01

    Full Text Available Learning scientific concepts are crucial for both normally achieving and intellectually disabled students attending inclusion classes. This research study aimed to reveal intellectually disabled students’ conceptions and thinkings utilizing data of interviews and drawings concerning the earth and heavenly bodies and comparing them with the findings belonging to those showing normal mental achievement. Thirty intellectually disabled students (19 boys and 11 girls participated to this research. They were questioned individually using clinical interview technique. Intellectually disabled students have main similarities to those of normally achieving concerning the phenomenon. All the students participating in the present research study do have misconceptions concerning the phenomenon. Their thinking approaches (tendencies and the way they are affected by certain context while constructing their conceptions is similar to those of normally achieving. They used their concepts consistently and showed theory-like mental constructions.

  18. A Preliminary Investigation of the Suitability of Aquatics for People with Severe and Profound Intellectual Disabilities

    Science.gov (United States)

    Aherne, Cian; Coughlan, Barry

    2017-01-01

    Background: Aquatics is an under-researched but possibly appropriate form of activity for people with severe to profound intellectual disabilities (SPIDs). Aim: The current pilot study investigates the suitability of an aquatics programme for service users with SPIDs. Method: Four service users with SPID completed an 8-12-session aquatics…

  19. Using Administrative Health Data to Identify Individuals with Intellectual and Developmental Disabilities: A Comparison of Algorithms

    Science.gov (United States)

    Lin, E.; Balogh, R.; Cobigo, V.; Ouellette-Kuntz, H.; Wilton, A. S.; Lunsky, Y.

    2013-01-01

    Background: Individuals with intellectual and developmental disabilities (IDD) experience high rates of physical and mental health problems; yet their health care is often inadequate. Information about their characteristics and health services needs is critical for planning efficient and equitable services. A logical source of such information is…

  20. Autonomy support in people with mild to borderline intellectual disability : Testing the Health Care Climate Questionnaire-Intellectual Disability (HCCQ-ID)

    NARCIS (Netherlands)

    Frielink, N.; Schuengel, C.; Embregts, P.J.C.M.

    2017-01-01

    Background Autonomy support in people with intellectual disability (ID) is an important yet understudied topic. Psychometrically sound instruments are lacking. This study tested the factor structure and reliability of an instrument for assessing the extent people with intellectual disability

  1. Interrogated with Intellectual Disabilities: The Risks of False Confession.

    Science.gov (United States)

    Schatz, Samson J

    2018-02-01

    False confessions happen. At least 245 people have been exonerated from convictions in cases featuring confessions that were simply not true. Confessions offer a narrative that allows law enforcement, and society in general, to neatly resolve cases with apparent clarity and closure. And yet the pressures officers place on suspects to provide that closure weigh disproportionately on the vulnerable, including individuals with intellectual disabilities. These individuals are disadvantaged at every step of the custodial interrogation, and they face heightened risks of falsely confessing. Moreover, the principal judicial safeguards against false confessions--assessing a suspect's Miranda waiver and determining whether a confession was voluntarily given within the bounds of the Fourteenth Amendment’s Due Process Clause--provide little protection for the innocent with intellectual disabilities. Few pieces of scholarship focus specifically on the heightened risks faced by individuals with intellectual disabilities throughout the process of police interrogation. This Note describes the various ways these individuals are disadvantaged. And it offers an additional data point illustrating the vulnerability of people with intellectual disabilities. This Note analyzes the 245 individuals (as of June 2, 2017) on the National Registry of Exonerations who have falsely confessed. Over one-quarter of them display indicia of intellectual disability. This percentage dwarfs the prevalence of people with intellectual disabilities in the general population and even exceeds most estimates of the proportion of the prison population suffering from intellectual disabilities. This Note concludes with several policy and doctrinal suggestions to better protect individuals with intellectual disabilities from the risks of false confession.

  2. Short-Term Memory Coding in Children With Intellectual Disabilities

    OpenAIRE

    Henry, L.; Conners, F.

    2008-01-01

    To examine visual and verbal coding strategies, I asked children with intellectual disabilities and peers matched for MA and CA to perform picture memory span tasks with phonologically similar, visually similar, long, or nonsimilar named items. The CA group showed effects consistent with advanced verbal memory coding (phonological similarity and word length effects). Neither the intellectual disabilities nor MA groups showed evidence for memory coding strategies. However, children in these gr...

  3. A survey of clinical nursing skills in intellectual disability nursing

    OpenAIRE

    McKeon, Michael

    2009-01-01

    In this study the question asked is: what clinical nursing skills are predominantly used in intellectual disability nursing? A survey of the nursing needs of people with moderate to severe intellectual disability in both residential and community units was undertaken with a questionnaire.The measure was a Likert design scale ranging across: skills used more than once a day, skills used daily, skills used weekly, skills used monthly, skills very rarely used, and skills never used.The results o...

  4. Therapy of depression in persons with intellectual disability

    OpenAIRE

    Tomić, Katarina; Mihajlović, Goran

    2012-01-01

    Considering the high frequency of depression among people with intellectual disability, the question of an appropriate therapeutic approach seems to be very important. The propper choice of therapy depends of the right diagnosis, which could present a problem, because of the atipical presentation of simptoms. Still, the efforts made to overcome onesidedness in treating depression among people with intellectual disability, which was seen mostly through insisting on psychopharmacotherapy, have ...

  5. Occupational burdens in special educators working with intellectually disabled students

    OpenAIRE

    Piotr Plichta

    2014-01-01

    Background: The article presents the results of psychosocial burdens in special educators (specialists in the field of oligophrenopedagogy) with intellectually disabled students. In theoretical part, specific context of occupational stress in special educators was introduced. Additionally, the need of broader research context regarding occupational stress and the risk of burnout in special educators working with intellectually disabled individuals were included. Material and Methods: The resu...

  6. [Aging and quality of life: challenges and opportunities for people with intellectual disabilities].

    Science.gov (United States)

    Schäper, S; Graumann, S

    2012-10-01

    In the coming years, a growing number of people with an intellectual disability will reach retirement age. In line with the change of paradigms, the leading ideas of participation, inclusion and self-determination have become the principles of the ideological and conceptual framework in social services for people with disabilities. However, in many places convincing concepts and arrangements of support for elderly people with intellectual disabilities are lacking, particularly beyond institutionalized concepts. The research project "Lebensqualität inklusiv(e)" (quality of life included) tries to bridge this gap. On the base of an estimation of the demographic development for this group of people, models of best practice have been documented and evaluated focusing on living conditions and the special requirements for elderly people with intellectual disabilities in order to gather ideas for the development of arrangements of support. The results show that an interdisciplinary cooperation is indispensable.

  7. Paediatric palliative care and intellectual disability-A unique context.

    Science.gov (United States)

    Duc, Jacqueline K; Herbert, Anthony Robert; Heussler, Helen S

    2017-11-01

    Paediatric palliative care is a nuanced area of practice with additional complexities in the context of intellectual disability. There is currently minimal research to guide clinicians working in this challenging area of care. This study describes the complex care of children with life-limiting conditions and intellectual disability by means of a literature synthesis and commentary with "best-practice" guide. As few articles concerning children with intellectual disability and palliative care needs were identified by formal systematic review, our expert consensus group has drawn from the paediatric palliative, oncology and adult intellectual disability literature to highlight common clinical challenges encountered in the day-to-day care of children with intellectual disability and life-limiting conditions. A longitudinal child- and family-centred approach is key to ensuring best-practice care for families of children with life-limiting conditions and intellectual disability. As highlighted by the great absence of literature addressing this important patient population, further research in this area is urgently required. © 2017 John Wiley & Sons Ltd.

  8. Asthma in intellectual disability: are we managing our patients appropriately?

    Science.gov (United States)

    2016-01-01

    People with intellectual disability are a vulnerable group of people with asthma that has, to date, largely been ignored in the medical literature. Although guidelines for medication management for people with intellectual disability suggest asthma is treated as for other populations, there are special considerations that should be taken into account when managing asthma in this group. Due to their cognitive impairment as well as comorbidities, they are likely to require support with asthma self-management, including inhaler use. Their varying degrees of autonomy mean that there is often a need to provide education and information to both the person and their caregivers. Educational aims To understand general principles of health of people with intellectual disability and how this affects the healthcare professional’s approach to asthma management. To understand how intellectual disability affects cognition, autonomy and communication, and therefore the ability of a person to self-manage asthma. To recognise ways of mitigating respiratory disease risk in people with intellectual disability. To describe ways for healthcare professionals to support people with intellectual disability and their caregivers in asthma management. PMID:28210318

  9. Identifying classes of persons with mild intellectual disability or borderline intellectual functioning : A latent class analysis

    NARCIS (Netherlands)

    Nouwens, P.J.G.; Lucas, R.; Smulders, N.B.M.; Embregts, P.J.C.M.; van Nieuwenhuizen, Ch.

    2017-01-01

    Background Persons with mild intellectual disability or borderline intellectual functioning are often studied as a single group with similar characteristics. However, there are indications that differences exist within this population. Therefore, the aim of this study was to identify classes of

  10. Motor Performance of Children with Mild Intellectual Disability and Borderline Intellectual Functioning

    Science.gov (United States)

    Vuijk, P. J.; Hartman, E.; Scherder, E.; Visscher, C.

    2010-01-01

    Background: There is a relatively small body of research on the motor performance of children with mild intellectual disabilities (MID) and borderline intellectual functioning (BIF). Adequate levels of motor skills may contribute to lifelong enjoyment of physical activity, participation in sports and healthy lifestyles. The present study compares…

  11. Motor performance of children with mild intellectual disability and borderline intellectual functioning

    NARCIS (Netherlands)

    Vuijk, P. J.; Hartman, E.; Scherder, E.; Visscher, C.

    2010-01-01

    Background There is a relatively small body of research on the motor performance of children with mild intellectual disabilities (MID) and borderline intellectual functioning (BIF). Adequate levels of motor skills may contribute to lifelong enjoyment of physical activity, participation in sports and

  12. Reading skills among students with intellectual disabilities.

    Science.gov (United States)

    Ratz, Christoph; Lenhard, Wolfgang

    2013-05-01

    Students with intellectual disabilities (ID) display an extremely wide variety of skills in the field of literacy, and the ability to read and write are central learning aims in the education of students with ID. It is vital to gain detailed knowledge on the literacy skills of students with ID in order to plan instruction, create learning environments, implement educational policies or funding models and specify future fields of research. However, there has been little research into the prevalence and variation of their reading skills. The present study assessed the reading stages of 1629 school-aged students with ID regardless of aetiology (age 6-21) in Bavaria, one of the largest regions in Germany within a randomly chosen and representative sample. Teachers described the reading and writing stages of their students in a questionnaire following the developmental model of Frith. Results indicate that 29.3% do not read at all, 6.8% read at a logographic stage, 31.9% at an alphabetic and 32% at an orthographic level. Writing achievements are lower on average. We analyze and discuss the determinants of literacy in this sample with regard to the sociocultural background of students with ID and draw conclusions for teaching and school policies. Copyright © 2013 Elsevier Ltd. All rights reserved.

  13. An investigation of factors related to the use of respite care services for children with severe motor and intellectual disabilities (SMID) living at home in Japan.

    Science.gov (United States)

    Nishigaki, Kaori; Yoneyama, Akira; Ishii, Mitsuko; Kamibeppu, Kiyoko

    2017-03-01

    Limited time away from the child is cited as the main factor that increases the burden for the primary caregiver of severely disabled children. The aim of this study was to quantitatively elucidate the factors related to the desire to use social services and the actual use of respite care services by the primary caregivers of severely disabled children in Japan. In this study, we investigated the use of respite care services in accordance with the primary caregivers' wishes by examining inhibiting or promoting factors associated with respite care service use only among those who wished to use social services. A total of 169 Japanese mothers participated and answered the questionnaires. We conducted a logistic regression analysis and a multiple regression analysis to investigate the factors related to respite care service use. The most important factors affecting a primary caregiver's desire to use social services were the belief that the child would enjoy using social services and the family's approval of the social service use. The most important factors affecting respite care service use were the family's approval of the use and a large care burden on the primary caregiver. Respite care services should be sought out before the care burden becomes too great to enable the primary caregiver to more easily contribute to the continuation of home care. A background of mother-child separation anxiety disrupted the use of respite care. However, believing that the child enjoys using social services may reduce primary caregivers' psychological resistance to being separated from their child, which is supported by tradition. Thus, it is also important for respite care service providers to provide information about the children to their primary caregivers and families while they are using respite care services. © 2016 John Wiley & Sons Ltd.

  14. "It's My Life": Autonomy and People with Intellectual Disabilities

    Science.gov (United States)

    Björnsdóttir, Kristín; Stefánsdóttir, Guðrún V; Stefánsdóttir, Ástríður

    2015-01-01

    This article discusses autonomy in the lives of adults with intellectual disabilities. The article draws on inclusive research in Iceland with 25 women and 16 men and employs ideas of relational autonomy from the perspectives of the Nordic relational approach to disability. In this article, we examine autonomy in relation to private life, that is,…

  15. Dental Care among Young Adults with Intellectual Disability

    Science.gov (United States)

    Kancherla, Vijaya; Van Naarden Braun, Kim; Yeargin-Allsopp, Marshalyn

    2013-01-01

    Dental care among young adults with intellectual disability (ID) is poorly documented and largely unmet. By using population-based data from the Metropolitan Atlanta Developmental Disabilities Follow-Up Study, we assessed factors associated with at least one or two dental visits per year among young adults with and without ID. Significantly fewer…

  16. Intellectual Disabilities and Child Psychiatry: Looking to the Future

    Science.gov (United States)

    Hodapp, Robert M.; Dykens, Elisabeth M.

    2009-01-01

    We begin this article by examining the role of intellectual disabilities within child psychiatry, highlighting the relatively steady role of disabilities and the recent movement to examine behavior in specific genetic syndromes. We next propose five questions for future work. Questions relate to (1) specifying the nature of gene-brain-behavior…

  17. [Barcelona Test for Intellectual Disability: a new instrument for the neuropsychological assessment of adults with intellectual disability].

    Science.gov (United States)

    Esteba-Castillo, S; Pena-Casanova, J; Garcia-Alba, J; Castellanos, M A; Torrents-Rodas, D; Rodriguez, E; Deus-Yela, J; Caixas, A; Novell-Alsina, R

    2017-05-16

    Neuropsychological assessment in individuals with intellectual disability is of utmost importance in order to determine the cognitive deficits underlying brain dysfunction and limiting intellectual functioning and adaptive behavior. However, no neuropsychological batteries in Spanish language have been created and validated for this population. To adapt the 'programa integrado de exploracion neuropsicologica-test Barcelona' and to validate the new version, the Barcelona Test for Intellectual Disability (TB-DI). To create normative data for its clinical use. The original test was modified based on data from a pilot sample of 65 individuals with intellectual disability. In order to study the psychometric properties of the TB-DI, it was administered to a sample of 170 individuals with intellectual disability and to a group of 60 individuals without it. The relevant variables for stratification of normative data were determined by means of regression models. The TB-DI was finally composed by 67 subtests grouped in eight cognitive domains and it showed good psychometric properties. Normative data were created for five groups taking into account intellectual disability level, age and acquired curricular competence. These data were organized in percentiles in a way that allows the creation of cognitive profiles in the clinical and experimental fields. The TB-DI constitutes a tool of high applicability in the population with intellectual disability. It shows adequate validity and reliability, and it has good psychometric properties. The cognitive profiles obtained by the TB-DI will provide valuable information for the treatment of adult adults with mild and moderate intellectual disability.

  18. Rare diseases and intellectual disability: assessment of quality of life of children and adolescents

    Directory of Open Access Journals (Sweden)

    Erica GONZÁLEZ MARTÍN

    2017-02-01

    Full Text Available Antecedents. The main objective of this study was to evaluate the quality of life in children and young people with rare diseases and intellectual disability, as well as to determine the incidence of certain predictors (i. e., gender, age, level of intellectual disability, type of school, type of illness and autonomous community in the criterion variable. Method. The KidsLife Scale was applied, a questionnaire based on the eight domain model of quality of life by Schalock and Verdugo. The sample comprised 103 participants with rare diseases and intellectual disability, aged between 3 and 21, who received supports in any organization providing educational, social, or health services. Results. The best scores were found in physical wellbeing, while the lowest were in social inclusion. The level of intellectual disability and support needs resulted in significant differences for the total score of the scale. Analyses by domains showed differences by gender, intellectual disability level, and type of schooling. Conclusions. The results argue for designing practices aimed to improve quality of life-related personal outcomes with regard to self-determination, inclusion, and interpersonal relationships.

  19. Pragmatic skills of children and youth with mild intellectual disability

    Directory of Open Access Journals (Sweden)

    Brojčin Branislav

    2016-01-01

    Full Text Available Pragmatic competence means the use of language in social context. Persons with intellectual disability experience numerous problems in this aspect of communication, but they are relatively pragmatically skilled in well-known situations, in which they are not subjected to significant cognitive and social requirements. The aim of this paper is to determine the level of pragmatic abilities of children and youth with mild intellectual disability and to perceive its relation to chronological age, speech comprehension, speech production, the level of intellectual functioning, gender and bilingualism of the participants. The level of pragmatic competence was tested in the sample of 120 children with mild intellectual disability, aged between 8 and 16, by using the Test of pragmatic language competence. The Clinical scales of Luria-Nebraska neuropsychological battery for children were also used. The results obtained in this research suggest that general level of achievement of children with mild intellectual disability in this domain of development is far below the expectations based on their chronological age. Significant progress appears between 12 and 14 years of age, but there are also two critical periods in their development. Important relations of pragmatic skills with speech comprehension, speech production, chronological age and intellectual level were established.

  20. Rehabilitation of Low Vision in Adults with Intellectual Disabilities : The Influence of Staff

    NARCIS (Netherlands)

    Sjoukes, Liesbeth; Kooijman, Aart; Koot, Hans; Evenhuis, Heleen

    Background We explored to what extent carers act on treatment and rehabilitation advice for low vision in intellectual disability (ID) services and how this relates to their familiarity with and appreciation of the advice. Methods We followed prospectively 60 adults with a recent diagnosis of low

  1. Changing Systems to Provide Inclusive Higher Education for Students with Intellectual Disabilities

    Science.gov (United States)

    Raynor, Olivia; Hayward, Katharine; Francis, Wilbert; Campisi, Catherine

    2016-01-01

    For several decades, institutions of higher education (IHE) have been addressing the need for postsecondary education (PSE) for students with intellectual disabilities (ID). These efforts have increased significantly since 2008 with passage of the Higher Education Opportunity Act (HEOA). The law includes a defined set of services and activities…

  2. Food Choice by People with Intellectual Disabilities at Day Centres: A Qualitative Study

    Science.gov (United States)

    Cartwright, Luke; Reid, Marie; Hammersley, Richard; Blackburn, Chrissie; Glover, Lesley

    2015-01-01

    People with intellectual disabilities experience a range of health inequalities. It is important to investigate possible contributory factors that may lead to these inequalities. This qualitative study identified some difficulties for healthy eating in day centres. (1) Service users and their family carers were aware of healthy food choices but…

  3. Parent Assessments of Self-Determination Importance and Performance for Students with Autism or Intellectual Disability

    Science.gov (United States)

    Carter, Erik W.; Lane, Kathleen Lynne; Cooney, Molly; Weir, Katherine; Moss, Colleen K.; Machalicek, Wendy

    2013-01-01

    Fostering student self-determination is now considered an essential element of special education and transition services for children and youth with intellectual disability and/or autism. Yet, little is known about the pivotal role parents might play beyond the school campus in fostering self-determination among their children with developmental…

  4. Transition Satisfaction and Family Well Being among Parents of Young Adults with Severe Intellectual Disability

    Science.gov (United States)

    Neece, Cameron L.; Kraemer, Bonnie R.; Blacher, Jan

    2009-01-01

    The transition from high school to adulthood is a critical life stage that entails many changes, especially for youth with severe intellectual disability. The transition period may be especially stressful for the families of these young adults, who often experience a sudden change, or decrease, in services. However, little research has examined…

  5. Defining the Needs of Patients with Intellectual Disabilities in the High Security Psychiatric Hospitals in England

    Science.gov (United States)

    Thomas, S. D.; Dolan, M.; Johnston, S.; Middleton, H.; Harty, M. A.; Carlisle, J.; Thornicroft, G.; Appleby, L.; Jones, P.

    2004-01-01

    Previous studies have suggested that a substantial proportion of the patients with intellectual disabilities (ID) in the high security psychiatric hospitals (HSPHs) should be transferred to more appropriate services to cater for their specific needs in the longer term. The individual and placement needs of high secure psychiatric patients detained…

  6. Predictors of Access to Sex Education for Children with Intellectual Disabilities in Public Schools

    Science.gov (United States)

    Barnard-Brak, Lucy; Schmidt, Marcelo; Chesnut, Steven; Wei, Tianlan; Richman, David

    2014-01-01

    Data from the National Longitudinal Transition Study-2 (SRI International, 2002) were analyzed to identify variables that predicted whether individuals with intellectual disability (ID) received sex education in public schools across the United States. Results suggested that individuals receiving special education services without ID were only…

  7. People with Intellectual Disabilities in Out-of-Area Specialist Hospitals: What Do Families Think?

    Science.gov (United States)

    Bonell, Simon; Ali, Afia; Hall, Ian; Chinn, Deborah; Patkas, Ioannis

    2011-01-01

    Background: Little has been published regarding the views of family members of people with intellectual disabilities who are being cared for in out-of-area psychiatric hospitals. This study explores this area with specific reference to whether culturally appropriate services were being provided. Materials and Methods: Sixteen family members were…

  8. The Experiences of High Intensity Therapists Delivering Cognitive Behavioural Therapy to People with Intellectual Disabilities

    Science.gov (United States)

    Marwood, Hayley; Chinn, Deborah; Gannon, Kenneth; Scior, Katrina

    2018-01-01

    Background: People with intellectual disabilities (ID) should be able to access the Improving Access to Psychological Therapies (IAPT) programme, currently a main provider of mainstream mental health services in England. IAPT offer cognitive behavioural therapy (CBT) to individuals experiencing mental health problems, although its effectiveness…

  9. "Just Having a Job": Career Advancement for Low-Wage Workers with Intellectual and Developmental Disabilities

    Science.gov (United States)

    Lindstrom, Lauren; Hirano, Kara A.; McCarthy, Colleen; Alverson, Charlotte Y.

    2014-01-01

    This study examined career development and early employment experiences for four young adults with intellectual and developmental disabilities. Researchers used a multiple-method, multiple case-study longitudinal design to explore career development within the context of family systems, high school and transition programs, adult services, and…

  10. Housing and Independent Living for Individuals with Intellectual and Developmental Disabilities

    Science.gov (United States)

    Leach, Debra

    2016-01-01

    This manuscript provides a review of housing and independent living options for individuals with intellectual and developmental disabilities (I/DD). While there has certainly been an increased emphasis on community integration and inclusion for people with I/DD, barriers to delivering housing supports and services in natural, integrated settings…

  11. Intellectual Disabilities and Neglectful Parenting: Preliminary Findings on the Role of Cognition in Parenting Risk

    Science.gov (United States)

    Azar, Sandra T.; Stevenson, Michael T.; Johnson, David R.

    2012-01-01

    Parents with intellectual disabilities (PID) are overrepresented in the child protective services (CPS) system. This study examined a more nuanced view of the role of cognition in parenting risk. Its goal was to validate a social information processing (SIP) model of child neglect that draws on social cognition research and advances in…

  12. Activities of Intellectual Disability Clinical Nurse Specialists in Ireland.

    Science.gov (United States)

    Doody, Owen; Slevin, Eamonn; Taggart, Laurence

    The aim of this study was to identify the contribution of Irish intellectual disability clinical nurse specialists (ID CNSs) to service delivery. A nonexperimental descriptive design was selected to survey ID CNSs presently working in Ireland. The questionnaire was developed based on focus group interviews, available literature, and expert panel views. Ethical approval and access were granted to all ID CNSs in Ireland. Thirty-two responded (33.68% response rate) from all work areas (voluntary organizations or health service executive) practicing within residential, community, or school services. Respondents were surveyed across a range of areas (demographic details and support to client, staff, family, organization, community, other agencies, and professional development). Findings identify that ID CNSs are active in all aspects of their roles as clinical specialist, educator, communicator, researcher, change agent, and leader, thus supporting person-centered care and improving service delivery. To meet changing healthcare demands, promote person-centered care, and improve service delivery, the CNS role in ID should be developed and supported. The findings merit a further study on ID CNS role activity, possible variables influencing role activity, and team members' views.

  13. Social inclusion of individuals with intellectual disabilities in the military.

    Science.gov (United States)

    Werner, Shirli; Hochman, Yael

    2017-06-01

    Despite policies advocating the social inclusion of persons with disabilities in all settings that are a part of everyday life within society, individuals with intellectual disabilities (ID) are usually excluded from service in the military. This study examined the meaning of service in the military for individuals with ID from the perspective of various stakeholder groups. Semi-structured qualitative interviews were conducted with 31 individuals with ID, 36 relatives, and 28 commanders. The recent model for social inclusion developed by Simplican et al. (2015) served as the basis for analyses. Findings suggest a successful social inclusion process for individuals with ID, which resulted in them feeling as an integral part and as contributing members of the military unit and of society at large. Social inclusion in the military was described with reference to two overlapping and interacting domains of interpersonal relationships and community participation. The interaction between interpersonal relationships within the military and community participation has led to positive outcomes for soldiers with ID. Recommendations are provided for the continued inclusion of individuals with ID in the military and in other everyday settings. Copyright © 2017 Elsevier Ltd. All rights reserved.

  14. Children with intellectual disability in rural South Africa: prevalence and associated disability.

    Science.gov (United States)

    Christianson, A L; Zwane, M E; Manga, P; Rosen, E; Venter, A; Downs, D; Kromberg, J G R

    2002-02-01

    The objective of the present study was to determine the prevalence of intellectual disability (ID) and its associated disabilities in rural South African children aged 2-9 years. It was undertaken in eight villages in the district of Bushbuckridge, Northern Province, South Africa. A two-phase design was utilized. The first phase involved screening children on a house-to-house basis by interviewing mothers or caregivers using an internationally validated questionnaire for detecting childhood disability in developing countries. The second phase consisted of a paediatric/neurodevelopmental assessment of the children who screened positive. A total of 6692 children were screened; 722 (10.8%) had a paediatric evaluation and 238 children were diagnosed with ID, giving a minimum observed prevalence of 35.6 per 1000 children in this population. The prevalence of severe and mild ID was 0.64 per 1000 and 29.1 per 1000 children, respectively. The male:female ratio of children with ID was 3:2. In the affected children, a congenital aetiology for the ID was determined in 49 subjects (20.6%), an acquired aetiology in 15 (6.3%) and the aetiology was undetermined in 174 children (73.1%). Epilepsy (15.5%) and cerebral palsy (8.4%) were the commonest associated disabilities. The present study represents the first data on the prevalence of ID and associated disabilities in rural South African children. The prevalence of ID was comparable with results from a study performed in one other African country (Zambia) as well as those from other developing countries. The data provide an initial factual insight into ID and its associated disabilities for healthcare, social service and educational policy planners. This study provides a basis for the initiation and development of appropriate and integrated services for the best possible care of individuals affected with these disabilities, and for their possible prevention.

  15. The prevalence and nature of intellectual disability in Norwegian prisons.

    Science.gov (United States)

    Søndenaa, E; Rasmussen, K; Palmstierna, T; Nøttestad, J

    2008-12-01

    The objective of the study was to calculate the prevalence of inmates with intellectual disabilities (ID), and identify historical, medical and criminological characteristics of a certain impact. A random sample of 143 inmates from a Norwegian prison cross sectional sample was studied. The Hayes Ability Screening Index (HASI) was validated with the Wechsler Abbreviated Scale of Intelligence (WASI). The prevalence of inmates with ID, IQ intellectual handicap, are mostly absent in the Norwegian criminal justice system.

  16. READING-WRITING AND LITERACY IN CHILDREN WITH INTELLECTUAL DISABILITIES

    Directory of Open Access Journals (Sweden)

    Marilene Bortolotti Boraschi

    2013-07-01

    Full Text Available This article focuses on the role and learning of reading and wrinting to human development as a social practice, considering the necessary condition to reading and writing as an exercise in citizenship. Aims to reflect on the occurrence of reading-writing processes and literacy in children with intellectual disabilities. The study was conducted by means of literature, and are based on a qualitative research. The reflections made throughout the investigation brought some considerations on intellectual disability, charactering it. Allowed some notes on the processes of reading-writing and literacy. As the survey results, some thoughts were about the possible occurrence of the processes of reading-writing and literacy in intellectually disabled children, discussing how these processes can take place through pedagogical practices in classrooms common regular education, contributing to the appropriation of the world literate and active participation by such child in society.

  17. Short-term memory coding in children with intellectual disabilities.

    Science.gov (United States)

    Henry, Lucy

    2008-05-01

    To examine visual and verbal coding strategies, I asked children with intellectual disabilities and peers matched for MA and CA to perform picture memory span tasks with phonologically similar, visually similar, long, or nonsimilar named items. The CA group showed effects consistent with advanced verbal memory coding (phonological similarity and word length effects). Neither the intellectual disabilities nor MA groups showed evidence for memory coding strategies. However, children in these groups with MAs above 6 years showed significant visual similarity and word length effects, broadly consistent with an intermediate stage of dual visual and verbal coding. These results suggest that developmental progressions in memory coding strategies are independent of intellectual disabilities status and consistent with MA.

  18. Interventions to promote physical activity for adults with intellectual disabilities

    Directory of Open Access Journals (Sweden)

    Viviene A Temple

    2017-07-01

    Full Text Available Objective. To describe interventions designed to promote physical activity for adults with intellectual disabilities and the effects on overall physical activity levels and on health outcomes. Materials and methods. A systematic review of eight databases until January 31, 2015 identified 383 citations. The inclusion criteria were: a the study sample consisted of adults with intellectual disabilities, b the study implemented an intervention to initiate, increase, or maintain physical activity, and c quantitative or qualitative data were used to report the effectiveness of the intervention. Six articles from the 383 citations met this criterion. Results. Three studies resulted in significant increases in physical activity behaviour; however well-controlled trials designed to improve weight status by increasing physical activity did not produce significant effects. Conclusion. Overall, the results indicate that interventions to increase physical activity should simultaneously target the individual with intellectual disability as well as their proximal environment over a sustained period of time.

  19. LEARNING PROBLEMS IN CHILDREN WITH MILD INTELLECTUAL DISABILITY

    Directory of Open Access Journals (Sweden)

    Keskinova Angelka

    2018-04-01

    Full Text Available School failure is one of the more complex, more difficult and unfortunately frequent problem that modern school meets. Many factors can cause school failure, such as: child development characteristics, family and school-originated factors. The purpose of the research is analysis of the specific learning problems in students with a mild intellectual disability. For our research we used ACADIA test, which contains 13 subtests for assessing the overall individual functioning. The research involved 144 students. We divided the sample into two groups, children with intellectual disability (our target group and control group. We found that generally all students with the intellectual disability have special learning problems. According to individual subtests analysis we concluded that the ability for visual association is best developed among these students while on the subtest for auditory memory they achieved worse results. With the analysis of the control group we found that 13.75% of the students have special learning problems.

  20. Behaviour Problems in Children with Intellectual Disabilities in a Resource-Poor Setting in India--Part 1: Association with Age, Sex, Severity of Intellectual Disabilities and IQ

    Science.gov (United States)

    Lakhan, Ram; Kishore, M. Thomas

    2018-01-01

    Background: Behaviour problems are most common in people with intellectual disabilities. Nature of behaviour problems can vary depending upon the age, sex and intellectual level (IQ). Objectives: This study examined the distribution of behaviour problems across intellectual disability categories and their association with IQ age and sex in…

  1. Health promotion and intellectual disability: listening to men.

    Science.gov (United States)

    Bollard, Martin

    2017-01-01

    Taking responsibility for your own health has been a central tenet of public health policy internationally for a number of decades. Governments in the UK and internationally continue to promote a plethora of health promotion strategies, encouraging individuals and communities to adopt healthy lifestyle choices. Although it is widely recognised that men are not as proactive in seeking out medical help or taking on health promotion advice as women, limited gender-sensitive research exists in the field of intellectual disability. Despite many health promotion policy and practice strategies targeted at this population, little research exists exploring whether men with intellectual disability acknowledge health promotion advice. The study aimed to explore how men with mild-to-moderate intellectual disability understood and perceived their health and what health promotion messages they acted upon. The study was based on a participatory approach which enabled 11 men with intellectual disability to contribute as steering group members and as participants through one-to-one interviews. Data were collected between September 2011 and July 2012. Thematic analysis was undertaken. The participants demonstrated a capacity to understand their own health. This was inclusive of a concern about associating being obese with being unhealthy. The participants reported good relationships with their general practitioners (GPs) and felt valued, in particular when the GP was prepared to offer specific intellectual disability and health promotion advice. More gendered research inclusive of the views of this male population is required and the study reiterates the importance of promoting the health of men and women with intellectual disability. © 2015 John Wiley & Sons Ltd.

  2. Cyberbullying among students with intellectual and developmental disability in special education settings

    NARCIS (Netherlands)

    Didden, H.C.M.; Scholte, R.H.J.; Korzilius, H.P.L.M.; Moor, J.M.H. de; Vermeulen, A.; O'Reilly, M.F.; Lang, R.B.; Lancioni, G.E.

    2009-01-01

    Objective: To explore the types, prevalence and associated variables of cyberbullying among students with intellectual and developmental disability attending special education settings. Methods: Students (n = 114) with intellectual and developmental disability who were between 12–19 years of age

  3. Cyberbullying among students with intellectual and developmental disability in special education settings.

    NARCIS (Netherlands)

    Didden, R.; Scholte, R.H.J.; Korzilius, H.; Moor, J.M.H. de; Vermeulen, A.; O'Reilly, M.F.; Lang, R.; Lancioni, G.E.

    2009-01-01

    OBJECTIVE: To explore the types, prevalence and associated variables of cyberbullying among students with intellectual and developmental disability attending special education settings. METHODS: Students (n = 114) with intellectual and developmental disability who were between 12-19 years of age

  4. Cyberbullying among students with intellectual and developmental disability in special education settings

    NARCIS (Netherlands)

    Didden, R.; Scholte, R.H.J.; Korzilius, H.P.L.M.; Moor, J.M.H. de; Vermeulen, A.; O'Reilly, M.F.; Lang, R.; Lancioni, G.E.

    2009-01-01

    OBJECTIVE: To explore the types, prevalence and associated variables of cyberbullying among students with intellectual and developmental disability attending special education settings. METHODS: Students (n = 114) with intellectual and developmental disability who were between 12-19 years of age

  5. Knowledge about the joy in children with mild intellectual disability

    Directory of Open Access Journals (Sweden)

    Jasielska Aleksandra

    2017-06-01

    Full Text Available The aim of this study was to characterize the knowledge about the joy in children with mild intellectual disability. The premises relating to mental functioning of these children suggest that this knowledge is poorer and less complex than the knowledge of their peers in the intellectual norm. The study used the authoring tool to measure children’s knowledge of emotions including the joy. This tool takes into account the cognitive representation of the basic emotions available in three codes: image, verbal, semantic and interconnection between the codes - perception, symbolization and conceptualization which perform the functions of perception, expression and understanding. The study included children with the intellectual norm (N = 30 and children with mild intellectual disability (N = 30. The obtained results mainly indicate the differences in how the happiness is understood by particular groups, to the detriment of children with disability. The character of the results is largely determined by the level of organization of knowledge about the joy and accompanying mental operations. The results will be discussed, among others, in the context of the adjustment of the programs of lasting increase of happiness for people with intellectual disability.

  6. Management challenges in children with both epilepsy and intellectual disability.

    Science.gov (United States)

    Buelow, Janice M; Shore, Cheryl P

    2010-01-01

    People who have both epilepsy and intellectual disability have significant problems requiring skilled health care management. Clinical nurse specialists have the unique opportunity to work with these people and their families to help them develop self-management and family management skills. In this article, we describe some factors associated with intellectual disability and epilepsy. In addition, we address the management challenges associated with this dual diagnoses in 3 areas: (1) problems associated with the management of seizure and prescription management, (2) problems associated with the seizure management other than prescriptions, and (3) life management issues. Finally, we suggest ways that clinical nurse specialists can foster development of management skills.

  7. Intellectual disability in young people in custody in New South Wales, Australia - prevalence and markers.

    Science.gov (United States)

    Haysom, L; Indig, D; Moore, E; Gaskin, C

    2014-11-01

    Intellectual disability (ID) is known to be more common in incarcerated groups, especially incarcerated youth. Aboriginal young people have higher rates of ID, and make up half of all youth in juvenile custody in New South Wales (NSW), Australia. We aimed to describe the prevalence of possible ID and borderline intellectual functioning (BIF) in young people in NSW custody, and to describe the association between possible ID and Aboriginality after adjusting for the inequalities in social disadvantage. Baseline study of all youth in NSW Custodial Centres between August and October 2009, with 18-month follow-up. Using Wechsler Intelligence Scale for Children - Fourth Edition (WISC-IV) and Wechsler Adult Intelligence Scale - Fourth Edition (WAIS-IV) cognitive assessments, possible ID was defined as Extremely Low Intellectual Quotient range (Full Scale Intellectual Quotient, FSIQ intellectual functioning (by IQ assessment), and 14% had an IQ in the extremely low range (FSIQ intellectual impairment of those incarcerated from a young age. Aboriginal young people with psychosis are also at high risk of cognitive impairments that might indicate a possible co-morbid ID, and these patients should be diverted at court into community assessment services, rather than incarcerated. These results highlight a need for better and earlier identification of young people (particularly Aboriginal youth) at risk of ID and other co-morbidities in the juvenile justice system. © 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

  8. The main signs of ageing in people with intellectual disability.

    Science.gov (United States)

    Wark, Stuart; Hussain, Rafat; Edwards, Helen

    2016-12-01

    Investigations around ageing with an intellectual disability have increased substantially in the past three decades. A research gap continued to exist regarding the detection of ageing issues in this cohort of people, particularly in rural areas where access to specialist support continued to be limited. The purpose of this study was to identify the main signs of ageing in rural people with intellectual disabilities. A multi-round Delphi design was used to examine what signs of ageing were observed by disability support staff, who assisted people with intellectual disability. The project was conducted across nine of the ten rural regions (as defined by the government funding body) in New South Wales (NSW). There were 31 participants representing 14 non-government organisations. The group was composed of 26 women and 5 men, with a mean age of 47 years, who averaged 10-year experience with people with intellectual disabilities. The objective was to gain the direct input of rurally based disability workers to identify the main signs of ageing in people with intellectual disabilities. Thirty-two specific signs of ageing, including emerging mental health issues, grief, loss of identity and aggression, were identified. A thematic analysis indicated two main categories: mental/emotional functioning and physical functioning. When carers have the information and skills needed to identify the main signs of ageing, they can more accurately recognise and address potential problems in a timely manner. Such understandings have the potential to reduce premature admissions to residential aged-care. © 2016 National Rural Health Alliance Inc.

  9. Social support and intellectual disabilities: a comparison between social networks of adults with intellectual disability and those with physical disability.

    Science.gov (United States)

    Lippold, T; Burns, J

    2009-05-01

    Social support has been identified as a major protective factor in preventing mental health problems and also as a major contributor to quality of life. People with intellectual disabilities (ID) have been identified as having limited social support structures. Interventions have been focused on promoting their social presence and integration. However, previous studies have shown that this does not always lead to the formation of social relationships. To date few studies have looked at how having an ID leads to impoverished social networks. This study aimed to do this by contrasting the social relationships of people with physical disabilities (PD) and people with ID. Two groups of participants were recruited; 30 people with mild ID and 17 people with PD. Social and functional support networks were assessed, in addition to life experiences. Between and within group differences were then explored statistically. Adults with ID had more restricted social networks than PD, despite being involved in more activities. Social support for adults with ID was mainly provided by family and carers and few relationships with non-disabled people were identified. In contrast adults with PD had larger social networks than had been reported in the mainstream literature and had a balance of relationships with disabled and non-disabled people. The results suggest that there are additional processes attached to having an ID, which lead to continued impoverished lifestyles. The findings also endorse other work that suggests being physically integrated and engaged in a wide range of activities does not guarantee good social and emotional support.

  10. Special education for intellectual disability: current trends and perspectives.

    Science.gov (United States)

    Kauffman, James M; Hung, Li-Yu

    2009-09-01

    To inform readers of current issues in special education for individuals with intellectual disabilities and summarize recent research and opinion. Two issues dominate special education for students with intellectual disabilities in the early 21st century. First, what should be taught to such students and who should teach them? Second, where should such students be taught - in 'inclusive' settings alongside normal peers or in special settings dedicated to their special needs? Research on teaching reading, arithmetic, and functional daily living skills to students with disabilities suggests the superiority of direct, systematic instruction. Universal design is often seen as supportive of inclusion. Inclusion has been seen as the central issue in special education but is gradually giving way to concern for what students learn. Direct, systematic instruction in reading, arithmetic, and daily living skills is the most effective approach to teaching students with intellectual disabilities. Basic concepts and logic suggest that special and general education cannot be equivalent. We conclude that what students are taught should be put ahead of where they are taught. Our fundamental concern is that students with intellectual disabilities be respected and be taught all they can learn.

  11. Focus group interviews examining the contribution of intellectual disability clinical nurse specialists in Ireland.

    Science.gov (United States)

    Doody, Owen; Slevin, Eamonn; Taggart, Laurence

    2017-10-01

    To explore the contribution of clinical nurse specialists in intellectual disability nursing in Ireland. While clinical nurse specialists exist since the 1940s, they have only been a reality in Ireland since 2001. While the role of clinical nurse specialist has developed over the years, it still however is often seen as a complex multifaceted role that causes confusion, frustration and controversy. A exploratory qualitative approach using focus groups with Irish intellectual disability clinical nurse specialists (n = 31). Five focus group interviews were conducted to gather qualitative data to gain insight into the attitudes, perceptions and opinions of the participants. Data were audio-recorded, transcribed and analysed using Burnard's (Vital Notes for Nurses: Research for Evidence-Based Practice in Healthcare, 2011, Blackwell Publishing, Oxford) framework. Ethical approval was gained from the researcher's university and access granted by the national council for the professional development of nursing/midwifery in Ireland. The study highlights that intellectual disability clinical nurse specialists contribute to and support care delivery across a range of areas including client-focused and family-centred care, staff support, organisation support, community support and supporting other agencies. Overall, the study shows the importance of intellectual disability clinical nurse specialists and their contribution across a range of services, care environments and the support they offer to clients/families/staff/multidisciplinary team members and outside agencies. Ireland is in a unique position to develop knowledge regarding specialist care for people with intellectual disability that can be shared and adapted by other healthcare professionals in other countries that do not have specialised intellectual disability nurses. © 2016 John Wiley & Sons Ltd.

  12. Participatory research, people with intellectual disabilities and ethical approval: making reasonable adjustments to enable participation.

    Science.gov (United States)

    Northway, Ruth; Howarth, Joyce; Evans, Lynne

    2015-02-01

    The aim of this paper is to explore how making reasonable adjustments to the process of securing ethical approval for research can facilitate the meaningful involvement of people with intellectual disabilities as members of a research team. This is achieved through critical reflection upon the approach taken within one participatory research study whose objective was to explore how people with intellectual disabilities understand abuse. Internationally participatory research studies (in which active involvement of community members in all stages of the research process is sought) are becoming increasingly common in the context of health care and, more specifically, within research involving people with intellectual disabilities. However, whilst it is acknowledged that participatory research gives rise to specific ethical challenges, how (or if) involvement in securing ethical approval is facilitated, is not discussed in most research reports. The significance of this paper is that it seeks to address this gap by exploring how meaningful participation can be promoted by making reasonable adjustments. Within the study, the research team worked in collaboration with the ethics committee to identify potential barriers that could prevent the participation of members of the research team who had intellectual disabilities. Reasonable adjustments (such as redesigning forms) were made to the processes involved in securing ethical approval. This study demonstrated that it is possible to ensure that ethical standards are upheld and the requirements of ethics committees met whilst also facilitating the meaningful involvement of people with intellectual disabilities. The reasonable adjustments approach explored within this paper can be translated into the context of clinical practice: making changes to the way that services are delivered can promote greater involvement of people with intellectual disabilities in their own health care. © 2014 John Wiley & Sons Ltd.

  13. De novo mutations of KIAA2022 in females cause intellectual disability and intractable epilepsy.

    Science.gov (United States)

    de Lange, Iris M; Helbig, Katherine L; Weckhuysen, Sarah; Møller, Rikke S; Velinov, Milen; Dolzhanskaya, Natalia; Marsh, Eric; Helbig, Ingo; Devinsky, Orrin; Tang, Sha; Mefford, Heather C; Myers, Candace T; van Paesschen, Wim; Striano, Pasquale; van Gassen, Koen; van Kempen, Marjan; de Kovel, Carolien G F; Piard, Juliette; Minassian, Berge A; Nezarati, Marjan M; Pessoa, André; Jacquette, Aurelia; Maher, Bridget; Balestrini, Simona; Sisodiya, Sanjay; Warde, Marie Therese Abi; De St Martin, Anne; Chelly, Jamel; van 't Slot, Ruben; Van Maldergem, Lionel; Brilstra, Eva H; Koeleman, Bobby P C

    2016-12-01

    Mutations in the KIAA2022 gene have been reported in male patients with X-linked intellectual disability, and related female carriers were unaffected. Here, we report 14 female patients who carry a heterozygous de novo KIAA2022 mutation and share a phenotype characterised by intellectual disability and epilepsy. Reported females were selected for genetic testing because of substantial developmental problems and/or epilepsy. X-inactivation and expression studies were performed when possible. All mutations were predicted to result in a frameshift or premature stop. 12 out of 14 patients had intractable epilepsy with myoclonic and/or absence seizures, and generalised in 11. Thirteen patients had mild to severe intellectual disability. This female phenotype partially overlaps with the reported male phenotype which consists of more severe intellectual disability, microcephaly, growth retardation, facial dysmorphisms and, less frequently, epilepsy. One female patient showed completely skewed X-inactivation, complete absence of RNA expression in blood and a phenotype similar to male patients. In the six other tested patients, X-inactivation was random, confirmed by a non-significant twofold to threefold decrease of RNA expression in blood, consistent with the expected mosaicism between cells expressing mutant or normal KIAA2022 alleles. Heterozygous loss of KIAA2022 expression is a cause of intellectual disability in females. Compared with its hemizygous male counterpart, the heterozygous female disease has less severe intellectual disability, but is more often associated with a severe and intractable myoclonic epilepsy. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

  14. A Randomized Controlled Trial of a Specialist Liaison Worker Model for Young People with Intellectual Disabilities with Challenging Behaviour and Mental Health Needs

    Science.gov (United States)

    Raghavan, R.; Newell, R.; Waseem, F.; Small, N.

    2009-01-01

    Background: Twenty-six young people with intellectual disabilities and mental health needs from Pakistani and Bangladeshi communities were recruited as part of a bigger study to examine the effectiveness of a liaison worker in helping young people and their families access appropriate intellectual disabilities and mental health services. Method:…

  15. Mothering with an Intellectual Disability: A Phenomenological Exploration of Making Infant-Feeding Decisions

    Science.gov (United States)

    Guay, Amanda; Aunos, Marjorie; Collin-Vézina, Delphine

    2017-01-01

    Background: Mothers with intellectual disability are less likely than mothers without intellectual disability to breastfeed their infants, but there is little literature that addresses infant-feeding decisions among this population. This study explores experiences of mothers with intellectual disability in making and carrying out infant-feeding…

  16. Is It Worth It? Benefits in Research with Adults with Intellectual Disability

    Science.gov (United States)

    McDonald, Katherine E.; Conroy, Nicole E.; Olick, Robert S.

    2016-01-01

    Including adults with intellectual disability in research promotes direct benefits to participants and larger societal benefits. Stakeholders may have different views of what count as benefits and their importance. We compared views on benefits in research with adults with intellectual disability among adults with intellectual disability, family…

  17. Genetics Home Reference: PPP2R5D-related intellectual disability

    Science.gov (United States)

    ... Health Conditions PPP2R5D-related intellectual disability PPP2R5D-related intellectual disability Printable PDF Open All Close All Enable Javascript ... view the expand/collapse boxes. Description PPP2R5D -related intellectual disability is a neurological disorder characterized by moderate to ...

  18. Eye movement desensitization and reprocessing in an adolescent with epilepsy and mild intellectual disability

    NARCIS (Netherlands)

    Rodenburg, R.; Benjamin, A.; Meijer, A.M.; Jongeneel, R.

    2009-01-01

    Intellectual disability is a comorbid condition in epilepsy. People with epilepsy and intellectual disability are at high risk of developing behavioral problems. Among the many contributors to behavioral problems in people with epilepsy and intellectual disability are those of traumatic experiences.

  19. An Initial Evaluation of the Comprehensive Quality of Life Scale--Intellectual Disability.

    Science.gov (United States)

    Cummins, Robert A.; And Others

    1997-01-01

    A study of 59 Australian people with an intellectual disability and 69 university students evaluated a new scale to measure the life quality of people with an intellectual disability. The Comprehensive Quality of Life Scale--Intellectual Disability was found to be a useful instrument to measure comparative life quality. (Author/CR)

  20. "I Never Thought about It": Teaching People with Intellectual Disability to Vote

    Science.gov (United States)

    Agran, Martin; MacLean, William; Andren, Katherine Anne Kitchen

    2015-01-01

    Despite an increasing commitment in promoting the full inclusion of people with intellectual disability in their communities, it appears that few adults with intellectual disability participate in elections as registered voters. We surveyed a variety of stakeholders about voting by people with intellectual disability using quantitative and…

  1. Predictors of Visual-Motor Integration in Children with Intellectual Disability

    Science.gov (United States)

    Memisevic, Haris; Sinanovic, Osman

    2012-01-01

    The aim of this study was to assess the influence of sex, age, level and etiology of intellectual disability on visual-motor integration in children with intellectual disability. The sample consisted of 90 children with intellectual disability between 7 and 15 years of age. Visual-motor integration was measured using the Acadia test of…

  2. "You Have to Care." Perceptions of Promoting Autonomy in Support Settings for Adults with Intellectual Disability

    Science.gov (United States)

    Petner-Arrey, Jami; Copeland, Susan R.

    2015-01-01

    This study from the south-western United States investigated the perceptions of persons with intellectual disability receiving support and of persons providing support regarding the autonomy of people with intellectual disability. The participants included 10 people with intellectual disability and 10 support workers. Through interviews, this…

  3. Contextual Predictors of Self-Determined Actions in Students with and without Intellectual Disability

    Science.gov (United States)

    Mumbardó-Adam, Cristina; Shogren, Karrie A.; Guàrdia-olmos, Joan; Giné, Climent

    2017-01-01

    Research in the field of intellectual disability suggests that promotion of self-determination triggers positive transition outcomes for youth with intellectual disability. This article examines the contributions of personal and environmental variables in predicting self-determined action in students with and without intellectual disability. The…

  4. Processing of Facial Expressions of Emotions by Adults with Down Syndrome and Moderate Intellectual Disability

    Science.gov (United States)

    Carvajal, Fernando; Fernandez-Alcaraz, Camino; Rueda, Maria; Sarrion, Louise

    2012-01-01

    The processing of facial expressions of emotions by 23 adults with Down syndrome and moderate intellectual disability was compared with that of adults with intellectual disability of other etiologies (24 matched in cognitive level and 26 with mild intellectual disability). Each participant performed 4 tasks of the Florida Affect Battery and an…

  5. The experiences of staff who support people with intellectual disability on issues about death, dying and bereavement: A metasynthesis.

    Science.gov (United States)

    Lord, Ailsa J; Field, Stephen; Smith, Ian C

    2017-11-01

    Historically, people with intellectual disabilities have tended to be excluded from knowing about death, dying and bereavement. Staff in intellectual disability services can play a valuable role in improving understanding of these issues in those they support. This qualitative metasynthesis aimed to understand the experiences of staff supporting adults with intellectual disabilities with issues of death, dying and bereavement. Thirteen papers were identified following a systematic review of six databases. Three themes were developed following a lines-of-argument synthesis: (i) talking about death is hard: negotiating the uncertainty in death, dying and bereavement; (ii) the commitment to promoting a "good death"; and (iii) the grief behind the professional mask. "A cautious silence: The taboo of death" was an overarching theme. A more open culture around issues of death, dying and bereavement in intellectual disability settings is essential and could be promoted through staff training and support. © 2017 John Wiley & Sons Ltd.

  6. The Provision of Psychological Therapy to People with Intellectual Disabilities: An Investigation into Some of the Relevant Factors

    Science.gov (United States)

    Mason, J.

    2007-01-01

    Background: Five factors are proposed as important in influencing the provision of psychological therapy to people with intellectual disabilities (IDs): the perceived effectiveness of psychological therapy, individual clinician competence, service resources (number of trained clinicians), the level of the clients disability and the diagnostic…

  7. KEMANDIRIAN ANAK INTELLECTUAL DISABILITY TERKAIT DENGAN TINGKAT KEMATANGAN SOSIAL

    Directory of Open Access Journals (Sweden)

    Muh Khoironi Fadli

    2014-04-01

    Full Text Available Background:Intellectual disability is disorder of intellectual function that is significantly below averagewith various deficits in adaptive function, such as taking care of oneself or occupational activities thatemerge before the age of 18 years old. One characteristic of intellectuallydisabled children in adaptivefunction is social maturity disorder. Children with intellectual disability haveproblem in social maturityandlimitation in fulfilling needs in daily activities.Objective:To identify correlation between social maturity and self-reliance of children with intellectualdisability.Methods:The study was non experimental. It used cross sectional design and quantitative approach.Samples were taken throughproportionate stratified random samplingtechnique. Research instrumentused to assess social maturity was Vineland Social Maturity Scale (VSMS and self-reliance wasFunctional Independence Measure for Children (WeeFIM. Subject of the study were children withintellectual disability in SLB Bakti Siwithat met inclusion and exclusion criteria as many as 61children.The study usednon parametricSpearman’s Rank Correlationtestat significancep<0.05.Result:Social maturity was high in 9 children (14.8%, medium in 23 children (37.7%, and low in 29children (47.9%. Self-reliance of children with intellectual disability showed average score (mean105.36with deviation standard15.43and range56-126.Score of correlation between social maturity andself-reliance of children with intellectual disability inSLB Bakti Siwishowedpvalue 0.000 (p<0.05.Conclusion: There was significant correlation between social maturity and sel-reliance of children withintellectual disability in SLB Bakti Siwi with score of correlation in strong category.

  8. Injury among adolescents with intellectual disability: A prospective cohort study.

    Science.gov (United States)

    White, David; McPherson, Lyn; Lennox, Nicholas; Ware, Robert S

    2018-04-12

    Injury is the leading cause of mortality and morbidity in adolescents worldwide, and injury rates have been shown to be higher among youth with intellectual disability. Despite this, injury among adolescents with intellectual disability remains poorly investigated. This study aimed to identify characteristics associated with injury among adolescents with intellectual disability living in the community. A cohort of adolescents with intellectual disability living in southern Queensland, Australia was investigated prospectively between January 2006 and June 2010. Personal characteristics were collected via postal questionnaire. Injury information, including mechanism and location of injury, was extracted from general practitioner records. The association between demographic, social and clinical characteristics of participants and episodes of injury was investigated using negative binomial regression. A total of 289 injuries were recorded from 432 participants over 1627.3 years of study-time. The overall annual injury incidence was 17.5 (95%CI 14.7, 20.9) per 100 person years. Presence of ADHD and less severe disability was associated with increased risk of injury. Down syndrome and reduced verbal communication capacity were associated with decreased risk of injury. Falls accounted for the highest single mechanism of injury (19.0%) with the majority (73.2%) of injuries involving either upper or lower limbs. ADHD is a co-morbidity that increases risk of injury among adolescents with intellectual disability. A critical component of injury prevention is avoidance of the great variety of environmental risk factors for injury relevant to this population. Copyright © 2018 Elsevier Ltd. All rights reserved.

  9. Consensus statement of the international summit on intellectual disability and Dementia related to post-diagnostic support.

    Science.gov (United States)

    Dodd, Karen; Watchman, Karen; Janicki, Matthew P; Coppus, Antonia; Gaertner, Claudia; Fortea, Juan; Santos, Flavia H; Keller, Seth M; Strydom, Andre

    2017-09-07

    Post diagnostic support (PDS) has varied definitions within mainstream dementia services and different health and social care organizations, encompassing a range of supports that are offered to adults once diagnosed with dementia until death. An international summit on intellectual disability and dementia held in Glasgow, Scotland in 2016 identified how PDS applies to adults with an intellectual disability and dementia. The Summit proposed a model that encompassed seven focal areas: post-diagnostic counseling; psychological and medical surveillance; periodic reviews and adjustments to the dementia care plan; early identification of behaviour and psychological symptoms; reviews of care practices and supports for advanced dementia and end of life; supports to carers/ support staff; and evaluation of quality of life. It also explored current practices in providing PDS in intellectual disability services. The Summit concluded that although there is limited research evidence for pharmacological or non-pharmacological interventions for people with intellectual disability and dementia, viable resources and guidelines describe practical approaches drawn from clinical practice. Post diagnostic support is essential, and the model components in place for the general population, and proposed here for use within the intellectual disability field, need to be individualized and adapted to the person's needs as dementia progresses. Recommendations for future research include examining the prevalence and nature of behavioral and psychological symptoms (BPSD) in adults with an intellectual disability who develop dementia, the effectiveness of different non-pharmacological interventions, the interaction between pharmacological and non-pharmacological interventions, and the utility of different models of support.

  10. The effects of rehabilitation on intellectually-disabled people - a ...

    African Journals Online (AJOL)

    Background: Rehabilitation has emerged as a comprehensive approach to addressing intellectually-disabled peoples' skill deficits, improving competencies and facilitating optimal functioning in order to provide the greatest possible measure of social and economic participation, self-reliance and independence. Objective: ...

  11. A Descriptive Investigation of Dysphagia in Adults with Intellectual Disabilities

    Science.gov (United States)

    Chadwick, Darren D.; Jolliffe, J.

    2009-01-01

    Background: Dysphagia has rarely been investigated in adults with intellectual disabilities (ID) despite being a serious condition affecting health and quality of life. Method: This study collected information about 101 adults with ID, living in community settings, referred for an assessment of their eating and drinking. Ninety-nine people were…

  12. Study healthy ageing and intellectual disabilities : Recruitment and design

    NARCIS (Netherlands)

    Hilgenkamp, Thessa I. M.; Bastiaanse, Luc P.; Hermans, Heidi; Penning, Corine; van Wijck, Ruud; Evenhuis, Heleen M.

    2011-01-01

    Problems encountered in epidemiologic health research in older adults with intellectual disabilities (ID) are how to recruit a large-scale sample of participants and how to measure a range of health variables in such a group. This cross-sectional study into healthy ageing started with founding a

  13. ADAT3-related intellectual disability: Further delineation of the phenotype.

    Science.gov (United States)

    El-Hattab, Ayman W; Saleh, Mohammed A; Hashem, Amal; Al-Owain, Mohammed; Asmari, Ali Al; Rabei, Hala; Abdelraouf, Hanem; Hashem, Mais; Alazami, Anas M; Patel, Nisha; Shaheen, Ranad; Faqeih, Eissa A; Alkuraya, Fowzan S

    2016-05-01

    ADAT3-related intellectual disability has been recently described in 24 individuals from eight Saudi families who had cognitive impairment and strabismus. Other common features included growth failure, microcephaly, tone abnormalities, epilepsy, and nonspecific brain abnormalities. A single homozygous founder mutation (c.382G>A:p.(V128M)) in the ADAT3 gene, which encodes a protein that functions in tRNA editing, was identified in all affected individuals. In this report, we present additional 15 individuals from 11 families (10 Saudis and 1 Emirati) who are homozygous for the same founder mutation. In addition to the universal findings of intellectual disability and strabismus, the majority exhibited microcephaly and growth failure. Additional features not reported in the original cohort include dysmorphic facial features (prominent forehead, up-slanted palpebral fissures, epicanthus, and depressed nasal bridge), behavioral problems (hyperactivity and aggressiveness), recurrent otitis media, and growth hormone deficiency. ADAT3-related intellectual disability is an important recognizable cause of intellectual disability in Arabia. © 2016 Wiley Periodicals, Inc.

  14. Exclusion of children with intellectual disabilities from regular ...

    African Journals Online (AJOL)

    Study investigated why teachers exclude children with intellectual disability from the regular classrooms in Nigeria. Participants were, 169 regular teachers randomly selected from Oyo and Ogun states. Questionnaire was used to collect data result revealed that 57.4% regular teachers could not cope with children with ID ...

  15. Paediatric Palliative Care and Intellectual Disability--A Unique Context

    Science.gov (United States)

    Duc, Jacqueline K.; Herbert, Anthony Robert; Heussler, Helen S.

    2017-01-01

    Background: Paediatric palliative care is a nuanced area of practice with additional complexities in the context of intellectual disability. There is currently minimal research to guide clinicians working in this challenging area of care. Method: This study describes the complex care of children with life-limiting conditions and intellectual…

  16. Understanding Quality of Working Life of Workers with Intellectual Disabilities

    Science.gov (United States)

    Flores, Noelia; Jenaro, Cristina; Orgaz, M. Begona; Martin, M. Victoria

    2011-01-01

    Background: This paper examines the perceived quality of working life of workers with intellectual disabilities. Specifically, this paper looks at participants' perceptions in relation to perceived job demands and resources and their impact on experienced job satisfaction. Methods: In this cross-sectional survey, 507 workers with intellectual…

  17. Obesity in School Children with Intellectual Disabilities in France

    Science.gov (United States)

    Salaun, Laureline; Berthouze-Aranda, Sophie

    2011-01-01

    Background: The aims of this study were to assess the prevalence of obesity in school children with intellectual disabilities and to determine the most appropriate indicators of obesity measurement. Materials and Methods: The weight, height, body mass index (BMI), waist circumference, waist-to-height ratio and body fat percentage as measured by…

  18. Life Online: Resources for Students with an Intellectual Disability.

    Science.gov (United States)

    Weeks, Kerri

    2001-01-01

    Two Australian agencies planned, developed, piloted, and evaluated an online resource for teaching independent living skills to adult students with a mild intellectual disability using technology and the Internet. The resource, called Life Online, is a package of support resource materials tested in regional classrooms in Victoria, Australia.…

  19. ADHD Symptoms in Children with Mild Intellectual Disability

    Science.gov (United States)

    Simonoff, Emily; Pickles, Andrew; Wood, Nicky; Gringras, Paul; Chadwick, Oliver

    2007-01-01

    Objectives: To determine whether the nature and correlates of attention-deficit/hyperactivity disorder (ADHD) symptoms are different in subjects with mild intellectual disability (ID) compared to subjects with average ability. Method: From a general population sample of 2,726 12- to 15-year-olds, a stratified subsample was selected to enrich for…

  20. Conceptions of Work in Italian Adults with Intellectual Disability

    Science.gov (United States)

    Ferrari, Lea; Nota, Laura; Soresi, Salvatore

    2008-01-01

    People's ideas about work can greatly affect the ways in which they characterize their own work experience and their lives. The first aim of the present study was to analyze the concept of work in individuals with mild or moderate intellectual disability working in competitive or sheltered work settings and, second, to compare the notions of work…

  1. Short-Term Memory Coding in Children with Intellectual Disabilities

    Science.gov (United States)

    Henry, Lucy

    2008-01-01

    To examine visual and verbal coding strategies, I asked children with intellectual disabilities and peers matched for MA and CA to perform picture memory span tasks with phonologically similar, visually similar, long, or nonsimilar named items. The CA group showed effects consistent with advanced verbal memory coding (phonological similarity and…

  2. Cardiovascular Disease Risk Factors in Older People with Intellectual Disabilities

    NARCIS (Netherlands)

    C.F. de Winter (Channa)

    2014-01-01

    markdownabstract__Abstract__ Chapter 1 General introduction There is an increasing group of older people with intellectual disability in The Netherlands, reaching almost the same life expectancy as the general population. Age-related diseases, such as cardiovascular disease, cancer and dementia

  3. Aggression as Positive Reinforcement in People with Intellectual Disabilities

    Science.gov (United States)

    May, Michael E.

    2011-01-01

    From an applied behavior-analytic perspective, aggression in people with intellectual disabilities is mostly maintained by social reinforcement consequences. However, nonsocial consequences have also been identified in functional assessments on aggression. Behaviors producing their own reinforcement have been labeled "automatic" or "nonsocial" in…

  4. Development of physical fitness in children with intellectual disabilities

    NARCIS (Netherlands)

    Hartman, Esther; Smith, J.; Westendorp, M.; Visscher, C.

    BackgroundFew studies examined the development of physical fitness in children and youth with intellectual disabilities (ID), but the developmental patterns of physical fitness are largely unknown. The first aim was to examine physical fitness of primary school children with ID, aged 8-12, and

  5. The prevalence of constipation in institutionalized people with intellectual disability

    NARCIS (Netherlands)

    Böhmer, C. J.; Taminiau, J. A.; Klinkenberg-Knol, E. C.; Meuwissen, S. G.

    2001-01-01

    Constipation is a common problem in people with intellectual disability (ID). Laxatives are frequently prescribed with disappointing results. The prevalence of constipation was investigated in a random population of 215 people with ID (IQ < 50) and constipation was correlated with clinical symptoms.

  6. Prevalence of chronic diseases in adolescents with intellectual disability

    NARCIS (Netherlands)

    Oeseburg, B.; Jansen, D. E. M. C.; Dijkstra, G. J.; Groothoff, J. W.; Reijneveld, S. A.

    2010-01-01

    Valid community-based data on the prevalence of chronic diseases in adolescents (12-18 years) with intellectual disability (ID-adolescents) are scarce. The aim of this study was to assess the prevalence rates and the nature of chronic diseases in a population of ID-adolescents and to compare them

  7. Scaling Methods to Measure Psychopathology in Persons with Intellectual Disabilities

    Science.gov (United States)

    Matson, Johnny L.; Belva, Brian C.; Hattier, Megan A.; Matson, Michael L.

    2012-01-01

    Psychopathology prior to the last four decades was generally viewed as a set of problems and disorders that did not occur in persons with intellectual disabilities (ID). That notion now seems very antiquated. In no small part, a revolutionary development of scales worldwide has occurred for the assessment of emotional problems in persons with ID.…

  8. Same-Sex Relationships and Women with Intellectual Disabilities

    Science.gov (United States)

    Burns, Jan; Davies, Danielle

    2011-01-01

    Background: Limited existing research looking at homosexuality and people with intellectual disabilities has identified a low level of knowledge, homophobic attitudes and negative experiences for gay men. Mainstream research has identified traditional gender role beliefs to be highly associated with negative attitudes towards homosexuality. This…

  9. Verbal Working Memory in Children with Mild Intellectual Disabilities

    Science.gov (United States)

    Van der Molen, M. J.; Van Luit, J. E. H.; Jongmans, M. J.; Van der Molen, M. W.

    2007-01-01

    Background: Previous research into working memory of individuals with intellectual disabilities (ID) has established clear deficits. The current study examined working memory in children with mild ID (IQ 55-85) within the framework of the Baddeley model, fractionating working memory into a central executive and two slave systems, the phonological…

  10. College Students' Conceptualizations of Deficits Involved in Mild Intellectual Disability

    Science.gov (United States)

    Musso, Mandi W.; Barker, Alyse A.; Proto, Daniel A.; Gouvier, Wm. Drew

    2012-01-01

    Precedential rulings in recent capital murder trials may, in some cases, leave it up to a jury to determine whether or not an individual meets criteria for an intellectual disability (ID) and should be spared from the death penalty. Despite the potential for misconceptions about ID to bias decisions, few empirical studies have examined the…

  11. Risk of Fall for Individuals with Intellectual Disability

    Science.gov (United States)

    Chiba, Yoichi; Shimada, Atsuyoshi; Yoshida, Futoshi; Keino, Hiromi; Hasegawa, Mariko; Ikari, Hiroyuki; Miyake, Shikako; Hosokawa, Masanori

    2009-01-01

    Our aim was to identify risk factors for falling and establish a method to assess risk for falls in adults with intellectual disabilities. In a cross-sectional survey of 144 Japanese adults, we found that age, presence of epilepsy, and presence of paretic conditions were independent risk factors. The Tinetti balance and gait instrument was…

  12. An Assessment of Intellectual Disability Among Aboriginal Australians

    Science.gov (United States)

    Glasson, E. J.; Sullivan, S. G.; Hussain, R.; Bittles, A. H.

    2005-01-01

    Background: The health and well-being of Indigenous people is a significant global problem, and Aboriginal Australians suffer from a considerably higher burden of disease and lower life expectancy than the non-Indigenous population. Intellectual disability (ID) can further compromise health, but there is little information that documents the…

  13. Depression in Adults with Intellectual Disability: Symptoms and Challenging Behaviour

    Science.gov (United States)

    Hurley, A. D.

    2008-01-01

    Background: Psychiatric evaluation of adults with intellectual disability (ID) remains complex because of limitations in verbal abilities, atypical clinical presentation and challenging behaviour. This study examines the clinical presentation of adults with depression compared with bipolar disorder, anxiety disorders and non-psychiatric control…

  14. Intellectual Disability Modifies Gender Effects on Disruptive Behaviors

    Science.gov (United States)

    Einfeld, Stewart L.; Gray, Kylie M.; Ellis, Louise A.; Taffe, John; Emerson, Eric; Tonge, Bruce J.; Horstead, Sian K.

    2010-01-01

    In typically developing children, boys are more commonly diagnosed than girls with disruptive behavior disorders, namely, attention-deficit/hyperactivity disorder, conduct disorder, and oppositional defiant disorder. For children with intellectual disability (ID), the evidence for this gender effect is less clear. In this report we examine gender…

  15. Caregiving and Adults with Intellectual Disabilities Affected by Dementia

    Science.gov (United States)

    Courtenay, Ken; Jokinen, Nancy S.; Strydom, Andre

    2010-01-01

    Authors conducted a systematic review of the available Dutch, English, and German language literature for the period 1997-2008 on the current knowledge on social-psychological and pharmacological caregiving with respect to older adults with intellectual disabilities (ID) affected by dementia. Authors note that caregiving occurs on a personal level…

  16. Positive Group Psychotherapy Modified for Adults with Intellectual Disabilities

    Science.gov (United States)

    Tomasulo, Daniel J.

    2014-01-01

    Mental health disorders are considerably more prevalent among people with intellectual disabilities than in the general population, yet research on psychotherapy for people with dual diagnosis is scarce. However, there is mounting evidence to show that adults with a dual diagnosis can find help through group therapy and have more productive and…

  17. Recruitment to Intellectual Disability Research: A Qualitative Study

    Science.gov (United States)

    Nicholson, L.; Colyer, M.; Cooper, S. -A.

    2013-01-01

    Background: Difficulties in the recruitment of adults with intellectual disability (ID) to research studies are well described but little studied. The aim of this study was to investigate the difficulties in recruiting to a specific research project, in order to inform future recruitment to ID research. Methods: Individual semi-structured…

  18. Healthy Persons with Intellectual Disabilities in an Inclusive Society

    Science.gov (United States)

    van Schrojenstein Lantman-de Valk, H. M. J.

    2009-01-01

    Persons with intellectual disabilities (ID) have twice as many health problems than the general public. The author discusses evidence-based research on prevalence and best treatment of primary and secondary health problems in persons with ID. Citing the pan-European Pomona project, European data were collected on training for health professionals…

  19. The Impact of Simulated Interviews for Individuals with Intellectual Disability

    Science.gov (United States)

    Walker, Zachary; Vasquez, Eleazar; Wienke, Wilfred

    2016-01-01

    The purpose of this research study was to explore the efficacy of role-playing and coaching in mixed-reality environments for the acquisition and generalization of social skills leading to successful job interview performance. Using a multiple baseline across participants design, five young adults with intellectual disability practiced…

  20. Comparison of patients with and without intellectual disability under ...

    African Journals Online (AJOL)

    Background and Purpose: We analyzed and retrospectively compared patients with and without intellectual disability (ID) who underwent oral surgery under general anesthesia at Istanbul University, Faculty of Dentistry, Department of General Anesthesia, between October 2012 and June 2013 with regard to the following ...

  1. Dementia in intellectual disability: a review of diagnostic challenges ...

    African Journals Online (AJOL)

    The evaluation of dementia in individuals with intellectual disability (ID), which will guide subsequent intervention, care and management depends on the systematic review of a number of factors: (1) the individual historical context, obtained from multiple sources, (2) evaluation of the pre-existing cognitive, behavioural, ...

  2. Review of Parent Training Interventions for Parents with Intellectual Disability

    Science.gov (United States)

    Wade, Catherine; Llewellyn, Gwynnyth; Matthews, Jan

    2008-01-01

    Background: This paper reviews recent research to provide an updated perspective on the effectiveness of parent training interventions for parents with intellectual disability. The degree to which these studies meet previous recommendations for future research is explored, particularly with regard to the influence of context on intervention…

  3. Parenting of children with borderline to mild intellectual disability

    NARCIS (Netherlands)

    Kleefman, Marijke

    2015-01-01

    Raising children with borderline to mild intellectual disability (BMID) may cause parenting stress, especially when the child with BMID has psychosocial problems. To improve support, it is important to have a better understanding of the effectiveness of interventions to reduce problems in raising

  4. Sexual Risk Assessment for People with Intellectual Disabilities

    Science.gov (United States)

    Embregts, P.; van den Bogaard, K.; Hendriks, L.; Heestermans, M.; Schuitemaker, M.; van Wouwe, H.

    2010-01-01

    Given that sexually offensive behavior on the part of people with intellectual disabilities has been identified as a significant problem, we developed a risk assessment questionnaire, that takes not only various static and dynamic factors into account but also environmental risk variables. Psychologists and staff members completed this Risk…

  5. Enabling Integration in Sports for Adolescents with Intellectual Disabilities

    Science.gov (United States)

    Grandisson, Marie; Tetreault, Sylvie; Freeman, Andrew R.

    2012-01-01

    Background: Promoting the health and social participation of adolescents with intellectual disability is important as they are particularly vulnerable to encountering difficulties in those areas. Integration of these individuals in integrated sports is one strategy to address this issue. Methods: The main objective of this study was to gain a…

  6. Caregiver Attitudes to Gynaecological Health of Women with Intellectual Disability

    Science.gov (United States)

    Lin, Lan-Ping; Lin, Jin-Ding; Chu, Cordia M.; Chen, Li-Mei

    2011-01-01

    Background: There is little information available related to the reproductive health of people with intellectual disability (ID). The aims of the present study are to describe caregiver attitudes and to examine determinants of gynaecological health for women with ID. Method: We recruited 1152 caregivers (response rate = 71.87%) and analysed their…

  7. Spinal and Limb Abnormalities in Adolescents with Intellectual Disabilities

    Science.gov (United States)

    Lin, Jin-Ding; Lin, Pei-Ying; Lin, Lan-Ping; Lai, Chia-Im; Leu, Yii-Rong; Yen, Chia-Feng; Hsu, Shang-Wei; Chu, Chi-Ming; Wu, Chia-Ling; Chu, Cordia M.

    2010-01-01

    There are not many studies pertaining to the spinal or limb abnormalities in people with intellectual disabilities, without a clear profile of these deformities of them, efforts to understand its characters and improve their quality of life will be impossible. Therefore, this paper aims to describe the prevalence and related factors of spinal and…

  8. Including People with Intellectual Disabilities in Qualitative Research

    Science.gov (United States)

    Hall, Sarah A.

    2013-01-01

    The voice of people with intellectual disabilities (ID) is needed in the literature to best understand their unique experiences and perspectives. Researchers face challenges in conducting interviews with people with ID who are limited in conceptual and verbal language skills. It can also be difficult to obtain participants with ID because of…

  9. A Systematic Review of Suicidality in People with Intellectual Disabilities.

    Science.gov (United States)

    Dodd, Philip; Doherty, Ailbhe; Guerin, Suzanne

    2016-01-01

    Suicidality in people with intellectual disability has not been extensively researched. To identify the nature of the research that has actually been conducted on this topic. A search of research databases was conducted according to predefined criteria. Key information was extracted and rated for methodological merit. Twenty-four studies met the inclusion criteria for this systematic review. The aspects of suicidality investigated, which varied among studies, included suicidal attempts, behavior, ideation, and completed suicide. Thirteen studies highlighted risk factors for suicidality in this population. The most frequently noted risk factors were a concurrent mental health difficulty and the level of intellectual disability. Eight studies referred to people with intellectual disabilities' understanding of the concept of death or suicide. Various methodological issues were identified in the studies included. In what we believe to be first systematic review of suicidality in people with intellectual disabilities, it was apparent that well-designed, standardized research studies on the topic are scarce. There is consequently limited evidence to guide prevention and intervention strategies for suicidality in this population.

  10. Dementia in intellectual disability: a review of diagnostic challenges

    African Journals Online (AJOL)

    important in the context of rising life expectancies in this ... The evaluation of dementia in individuals with intellectual disability (ID), which will guide subsequent intervention, ... approach to the diagnosis of dementia in ID. .... reduced capacity for new learning. ..... mild memory decline, slightly shorter attention span, slower.

  11. Stability of cognitive performance in children with mild intellectual disability.

    Science.gov (United States)

    Jenni, Oskar G; Fintelmann, Sylvia; Caflisch, Jon; Latal, Beatrice; Rousson, Valentin; Chaouch, Aziz

    2015-05-01

    Longitudinal studies that have examined cognitive performance in children with intellectual disability more than twice over the course of their development are scarce. We assessed population and individual stability of cognitive performance in a clinical sample of children with borderline to mild non-syndromic intellectual disability. Thirty-six children (28 males, eight females; age range 3-19y) with borderline to mild intellectual disability (Full-scale IQ [FSIQ] 50-85) of unknown origin were examined in a retrospective clinical case series using linear mixed models including at least three assessments with standardized intelligence tests. Average cognitive performance remained remarkably stable over time (high population stability, drop of only 0.38 IQ points per year, standard error=0.39, p=0.325) whereas individual stability was at best moderate (intraclass correlation of 0.58), indicating that about 60% of the residual variation in FSIQ scores can be attributed to between-child variability. Neither sex nor socio-economic status had a statistically significant impact on FSIQ. Although intellectual disability during childhood is a relatively stable phenomenon, individual stability of IQ is only moderate, likely to be caused by test-to-test reliability (e.g. level of child's cooperation, motivation, and attention). Therefore, clinical decisions and predictions should not rely on single IQ assessments, but should also consider adaptive functioning and previous developmental history. © 2014 Mac Keith Press.

  12. Centres for People with Intellectual Disabilities: Attendees' Perceptions of Benefit

    Science.gov (United States)

    Gajewska, Urszula; Trigg, Richard

    2016-01-01

    Background: Day and community learning centres aim to provide intellectually disabled (ID) people with social support, life skills and greater control over their lives. However, there is little research exploring the benefits of attendance from the perspective of attendees and whether these goals are met. Materials and methods: Unstructured…

  13. Incidence of Dementia in Older Adults with Intellectual Disabilities

    Science.gov (United States)

    Strydom, Andre; Chan, Trevor; King, Michael; Hassiotis, Angela; Livingston, Gill

    2013-01-01

    Dementia may be more common in older adults with intellectual disability (ID) than in the general population. The increased risk for Alzheimer's disease in people with Down syndrome (DS) is well established, but much less is known about dementia in adults with ID who do not have DS. We estimated incidence rates from a longitudinal study of…

  14. Seizure detection using dynamic warping for patients with intellectual disability

    NARCIS (Netherlands)

    Wang, L.; Arends, J.B.A.M.; Long, X.; Wu, Y.; Cluitmans, P.J.M.

    2016-01-01

    Electroencephalography (EEG) is paramount for both retrospective analysis and real-time monitoring of epileptic seizures. Studies have shown that EEG-based seizure detection is very difficult for a specific epileptic population with intellectual disability due to the cerebral development disorders.

  15. Hypertension, Hyperglycemia, and Hyperlipemia among Adolescents with Intellectual Disabilities

    Science.gov (United States)

    Lin, Pei-Ying; Lin, Lan-Ping; Lin, Jin-Ding

    2010-01-01

    The present paper aims to assess the hypertension, hyperglycemia and hyperlipidemia prevalence of adolescents with intellectual disabilities, and to recognize the health disparities between the study participants and the general population. This study conducted a cross-sectional medical chart analysis of 856 students who participated in school…

  16. Learning capacity in adolescents with mild intellectual disabilities

    NARCIS (Netherlands)

    Tiekstra, Marlous; Hessels, Marco G P; Minnaert, Alexander E M G

    2009-01-01

    Scores on a learning potential test (the Hessels Analogical Reasoning Test) were examined to assess how to provide a better estimate of the learning capacity of students with mild intellectual disabilities compared to IQ scores. As a criterion, a dynamic test of chemistry learning was used. 46

  17. Age at Death in Individuals with Intellectual Disabilities

    Science.gov (United States)

    Arvio, Maria; Salokivi, Tommi; Bjelogrlic-Laakso, Nina

    2017-01-01

    Background: We aimed to ascertain the average age at death (AD) in the intellectual disability population for each gender and compare them to those of the general population during 1970-2012. Methods: By analysing medical records, we calculated the ADs of all deceased clients (N = 1236) of two district organizations responsible for intellectual…

  18. Motivational Aspects of Gaming for Students with Intellectual Disabilities

    Science.gov (United States)

    Saridaki, Maria; Mourlas, Constantinos

    2011-01-01

    The attention to learners with special needs, in particular those with intellectual disabilities, is an area of continuous development. It is considered important to develop adaptive educational solutions for the integration of people with educational difficulties according to their needs. Digital games provide an attractive and direct platform in…

  19. Pre-Partum Distress in Women with Intellectual Disabilities

    Science.gov (United States)

    McConnell, David; Mayes, Rachel; Llewellyn, Gwynnyth

    2008-01-01

    Background: This study investigates depression, anxiety and stress in pregnant women with intellectual disabilities and/or self-reported learning difficulties, and examines the association between these negative emotional states and perceived support and conflict in the women's interpersonal relationships. Method: Eight-hundred-and-seventy-eight…

  20. The Sexuality of Adults with Intellectual Disability in Poland.

    Science.gov (United States)

    Kijak, Remigiusz

    2013-06-01

    Sexuality is one of the most important aspects of human life that relates to sex, one's identification, sexual role, sexual preferences, eroticism, pleasure and intimacy. It fulfils such functions as procreative, hedonistic and relationship-building as well as constitutes an integral part of human's personality. The sexuality of people with intellectual disability is a special case - both from medical, pedagogical, psychological and ethical point of view. Little available research shows that it may become a significant factor that modifies their psychological and sexual functioning. The basic poll involved altogether 133 people with mild intellectual disability. The work was carried out in 11 schools and special institutions of three provinces in Poland: kujawsko - pomorskie, wielkopolskie and dolnośląskie (provinces of Kujavy and Pomerania, Great Poland and Lower Silesia) The respondents qualified to take part in the poll constituted a very uniform group - homogenous as regards their age of 18-25 as well as IQ level that was average for the people with higher degree of intellectual disability (HDID). Their age was of importance as in that life period one can observe the formation of first partner relationships with the clear aim of establishing a family. It is accompanied by a quick development of sexual desire and taking up various forms of sexual activity. People with intellectual disability don't form a homogenous group as regards their psychological and sexual development. In this group, one can observe both different forms of clinical mental handicap which definitely affects the whole process of sexual development. The sexual development is delayed by an average period of 3 years. The people with intellectual disability take up mostly autoerotic behaviour whereas partner relationships wthin that group are more seldom. The phenomenon of sexuality of people with higher degree of intellectual disability is an issue that needs further constant analysis. The

  1. Obesity in adolescents with intellectual disability: Prevalence and associated characteristics.

    Science.gov (United States)

    Krause, Sharon; Ware, Robert; McPherson, Lyn; Lennox, Nicholas; O'Callaghan, Michael

    Studies from a number of countries have indicated an increased risk of obesity in adolescents with intellectual disability. Whether risk factors for adults with intellectual disability apply to adolescents however is uncertain. This study examines obesity in a community sample of adolescents with intellectual disability in Australia, and investigates risk factors associated with obesity and overweight. A cross-sectional survey and medical record review on 261 adolescents with intellectual disability attending special education facilities in South-East Queensland, Australia between January 2006 and September 2010 was conducted. Information on age, gender, weight, height, syndrome specific diagnoses, problematic behaviours, mobility, taking psychotropic or epileptic medication, and perceived household financial difficulties was collected. Body mass index (BMI) was calculated and participants categorised as normal/underweight, overweight or obese according to the International Obesity Taskforce definitions. Overall 22.5% (95% CI: 17.8-28.0%) of adolescents were obese, and 23.8% (95% CI: 19.0-29.4%) were overweight, a marked increase compared to Australian norms. Adolescents with Down syndrome were more likely to be obese than other participants (odds ratio=3.21; 95% CI: 1.41-7.30). No association was found with other risk factors examined. Prevalence of obesity and overweight were increased compared to general Australian adolescents. The only significant risk factor was the presence of Down syndrome. These findings reinforce the need for a health policy and practice response to obesity that is inclusive of individuals with intellectual disability. Copyright © 2015 Asia Oceania Association for the Study of Obesity. Published by Elsevier Ltd. All rights reserved.

  2. [Occupational burdens in special educators working with intellectually disabled students].

    Science.gov (United States)

    Plichta, Piotr

    2014-01-01

    The article presents the results of psychosocial burdens in special educators (specialists in the field of oligophrenopedagogy) with intellectually disabled students. In theoretical part, specific context of occupational stress in special educators was introduced. Additionally, the need of broader research context regarding occupational stress and the risk of burnout in special educators working with intellectually disabled individuals were included. The results were obtained using Plichta and Pyzalski's Questionnaire of Occupational Burdens in Teaching (QOBT). The presented results are based on a research sample (N = 100) of special educators (female) teaching intellectually disabled students attending special schools in the city of Lódz. The obtained results were compared with the results coming from a large random sample of public school teachers working with non-intellectually disabled children from the Lodi voivodeship (N = 429) and referred to the norms of QOBT. The results show significant percentage of respondents obtaining high level of occupational burdens (conflict situations - 45%, organizational burdens - 31%, lack of work sense - 40%, global score - 40%). Seniority is not related to the level of burdens. Some significant differences concerning the level of occupational burdens between both groups of teachers were found. The study showed e.g. the strong need for supporting special educators in the workplace context and the need of implementing preventive and remedial measures at both individual and organizational levels (especially in terms of improving personal relationships in a workplace). Generally, the results show similarity of the stressors' ranking in special educators and school teachers working with non-intellectually disabled children.

  3. Occupational burdens in special educators working with intellectually disabled students

    Directory of Open Access Journals (Sweden)

    Piotr Plichta

    2014-04-01

    Full Text Available Background: The article presents the results of psychosocial burdens in special educators (specialists in the field of oligophrenopedagogy with intellectually disabled students. In theoretical part, specific context of occupational stress in special educators was introduced. Additionally, the need of broader research context regarding occupational stress and the risk of burnout in special educators working with intellectually disabled individuals were included. Material and Methods: The results were obtained using Plichta and Pyżalski's Questionnaire of Occupational Burdens in Teaching (QOBT. The presented results are based on a research sample (N = 100 of special educators (female teaching intellectually disabled students attending special schools in the city of Łódź. The obtained results were compared with the results coming from a large random sample of public school teachers working with non-intellectually disabled children from the Łodź voivodeship (N = 429 and referred to the norms of QOBT. Results: The results show significant percentage of respondents obtaining high level of occupational burdens (conflict situations - 45%, organizational burdens - 31%, lack of work sense - 40%, global score - 40%. Seniority is not related to the level of burdens. Some significant differences concerning the level of occupational burdens between both groups of teachers were found. Conclusions: The study showed e.g. the strong need for supporting special educators in the workplace context and the need of implementing preventive and remedial measures at both individual and organizational levels (especially in terms of improving personal relationships in a workplace. Generally, the results show similarity of the stressors' ranking in special educators and school teachers working with non-intellectually disabled children. Med Pr 2014;65(2:239–250

  4. An interactive multimedia program to prevent HIV transmission in men with intellectual disability.

    Science.gov (United States)

    Wells, Jennifer; Clark, Khaya; Sarno, Karen

    2014-05-01

    The efficacy of a computer-based interactive multimedia HIV/AIDS prevention program for men with intellectual disability (ID) was examined using a quasi-experimental within-subjects design. Thirty-seven men with mild to moderate intellectual disability evaluated the program. The pretest and posttest instruments assessed HIV/AIDS knowledge (high-risk fluids, HIV transmission, and condom facts) and condom application skills. All outcome measures showed statistically significant gains from pretest to posttest, with medium to large effect sizes. In addition, a second study was conducted with twelve service providers who work with men with ID. Service providers reviewed the HIV/AIDS prevention program, completed a demographics questionnaire, and a program satisfaction survey. Overall, service providers rated the program highly on several outcome measures (stimulation, relevance, and usability).

  5. Residential Transitions among Adults with Intellectual Disability across 20 Years

    Science.gov (United States)

    Woodman, Ashley C.; Mailick, Marsha R.; Anderson, Kristy A.; Esbensen, Anna J.

    2014-01-01

    The present study addresses critical gaps in the literature by examining residential transitions among 303 adults with intellectual disability over 10 years (Part 1) and 75 adults with Down syndrome over 20 years (Part 2). All adults lived at home at the start of the study, but many moved to a variety of settings. Several characteristics of the adults with intellectual disability differed across settings, most notably adaptive behavior and the number of residential transitions, while characteristics such as age, type of disability, and behavior problems were less predictive of residential placements. The number of moves over the course of the study varied widely, with critical links to earlier family dynamics, social relationships, and health and adaptive behavior. PMID:25354121

  6. Intellectual disability, consumerism and identity: to have and have not?

    Science.gov (United States)

    McClimens, Alex; Hyde, Martin

    2012-06-01

    Here we consider the consumer society as it currently exists in the UK and examine its relationship and relevance to the population of individuals with intellectual disability. We do this through a reading of the associated literature on theories of shopping and consumption which we then contrast with research evidence as it applies to the lives of people with intellectual disability. By brining together these two perspectives we hope to shine some light on ideas around identity and choice. We then transfer these arguments to the health and social care sector. Here we ask whether an economic model which has been exposed as divisive and exclusionary should be used in the administration of social secutity benefits of the kind accesed by people with a range of disabilities. We conclude that the unchallenged advance of marketisation within health and social care may benefit those who are financially able but for those who are economically disadvantaged the choices offered are illusory at best.

  7. Setting Global Research Priorities for Developmental Disabilities, Including Intellectual Disabilities and Autism

    Science.gov (United States)

    Tomlinson, M.; Yasamy, M. T.; Emerson, E.; Officer, A.; Richler, D.; Saxena, S.

    2014-01-01

    Objectives: The prevalence of intellectual disabilities (ID) has been estimated at 10.4/1000 worldwide with higher rates among children and adolescents in lower income countries. The objective of this paper is to address research priorities for development disabilities, notably ID and autism, at the global level and to propose the more rational…

  8. Does visual impairment lead to additional disability in adults with intellectual disabilities?

    NARCIS (Netherlands)

    Sjoukes, L.; Koot, H. M.; Kooijman, A. C.; Evenhuis, H.

    This study addresses the question to what extent visual impairment leads to additional disability in adults with intellectual disabilities (ID). In a multi-centre cross-sectional study of 269 adults with mild to profound ID, social and behavioural functioning was assessed with observant-based

  9. Does visual impairment lead to additional disability in adults with intellectual disabilities?

    NARCIS (Netherlands)

    Evenhuis, H.M.; Sjoukes, L.; Koot, H.M.; Kooijman, A.C.

    2009-01-01

    Background: This study addresses the question to what extent visual impairment leads to additional disability in adults with intellectual disabilities (ID). Method: In a multi-centre cross-sectional study of 269 adults with mild to profound ID, social and behavioural functioning was assessed with

  10. Aged and Dependency Ratios among Autism, Intellectual Disability and Other Disabilities: 10-Year Trend Analysis

    Science.gov (United States)

    Lin, Jin-Ding; Lin, Lan-Ping; Sung, Chang-Lin; Wu, Jia-Ling

    2011-01-01

    Dependency ratios are useful as general indicators of future economic and social health. The present paper focuses on the description of dependency ratios and over time change in different kind of disability which include autism, intellectual disability, vision, hearing, and limb impairments. We analyzed data mainly from the public web-access…

  11. Executive Function in Children with Intellectual Disability--The Effects of Sex, Level and Aetiology of Intellectual Disability

    Science.gov (United States)

    Memisevic, H.; Sinanovic, O.

    2014-01-01

    Background: Executive function is very important in the children's overall development. The goal of this study was to assess the executive function in children with intellectual disability (ID) through the use of the Behavior Rating Inventory of Executive Function (BRIEF) teacher version. An additional goal was to examine the differences in…

  12. Prevalence and outcomes of heart transplantation in children with intellectual disability.

    Science.gov (United States)

    Wightman, Aaron; Bartlett, Heather L; Zhao, Qianqian; Smith, Jodi M

    2017-03-01

    Heart transplantation in children with intellectual disability is a controversial issue. We sought to describe the prevalence and outcomes of heart transplantation in children with intellectual disability and hypothesized that recipients with intellectual disability have comparable short-term outcomes compared to recipients without intellectual disability. We performed a retrospective cohort analysis of children receiving a first heart-alone transplant in the UNOS STAR database from 2008 to 2013. Recipients with intellectual disability were compared to those without using chi-square tests. Kaplan-Meier curves were constructed for patient and graft survival. Cox proportional hazard models were used to estimate the association between intellectual disability and graft failure and patient survival. Over the study period, 107 children with intellectual disability underwent initial heart transplantation, accounting for 8.9% of first pediatric heart transplants (total=1204). There was no difference in the incidence of acute rejection between groups in the first year after transplant. Mean functional status scores at follow-up improved in both groups after transplantation, but tended to be lower among children with intellectual disability than children without. Log-rank tests did not suggest significant differences in graft survival between those with and without intellectual disability during the first 4 years following transplantation. Children with intellectual disability constitute a significant portion of total heart transplants with short-term outcomes comparable to children without intellectual disability. © 2016 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

  13. Sibling Relationship Quality and Social Functioning of Children and Adolescents with Intellectual Disability

    Science.gov (United States)

    Floyd, Frank J.; Purcell, Susan E.; Richardson, Shana S.; Kupersmidt, Janis B.

    2009-01-01

    We examined sibling relationships for children and adolescents with intellectual disability and assessed implications for their social functioning. Targets (total N = 212) had either intellectual disability, a chronic illness/physical disability, or no disability. Nontarget siblings reported on relationship quality, sibling interactions were…

  14. Self-Esteem of Greek Mothers of Children with Intellectual Disabilities.

    Science.gov (United States)

    Argyrakouli, Effi; Zafiropoulou, Maria

    2003-01-01

    This study examined the self-esteem of 50 mothers of children with intellectual disabilities living in central Greece and 50 similar mothers of non-disabled children. Results indicated significantly lower self-esteem for mothers of children with intellectual disabilities. The best predictor of positive maternal self-esteem in the disabled group…

  15. Ensuring oral health for older individuals with intellectual and developmental disabilities.

    Science.gov (United States)

    Waldman, H Barry; Perlman, Steven P

    2012-04-01

    To emphasise the oral health needs of older individuals with intellectual and developmental disabilities, the impact on the individual's general health and the role that can be played by nurses. All too often an examination and consideration of the oral health condition of this patient population by nurses/physicians is cursory at best. The increasing retention of the dentition into later years of life provides both the favourable abilities for eating, speech and self esteem, but also the potential for local and general health concerns. Discursive paper. Based on the findings from dental examination of thousands of international athletes in the Special Olympic Games and clinical experiences in academic and private practice settings for care of individuals with intellectual and developmental disabilities, a discursive listing was developed for use in a preliminary examination of the oral cavity. A nurse can play a critical role in the examination, preventive services and referrals for dental care for older individuals with intellectual and developmental disabilities. The specific oral health needs of older individuals with intellectual and developmental disabilities should be an integral component of the preventive and general health care provided by nurses. © 2012 Blackwell Publishing Ltd.

  16. Promoting job safety for workers with intellectual disabilities: the staying safe at work training curriculum.

    Science.gov (United States)

    Dewey, Robin

    2011-01-01

    In the United States, approximately 125,000 people with disabilities are employed through Community Rehabilitation Programs in manufacturing, assembly, and service jobs. These jobs have significant hazards and, consequently, the workers are at risk of injury. Training that empowers workers to participate in prevention efforts can help reduce work-related injuries. In general this kind of health and safety training in the United States is limited. It is even more so for workers with intellectual disabilities, in part because there have not been programs for teaching individuals with cognitive challenges health and safety skills, adapted to their learning needs. This paper describes the development and promotion of the Staying Safe at Work curriculum of UC Berkeley's Labor Occupational Health Program, which is designed for use by support agencies and employers of workers with intellectual disabilities. The goal of this program is to teach these workers essential occupational safety and health skills in a manner they can understand.

  17. Twenty-Five Year Survival of Children with Intellectual Disability in Western Australia.

    Science.gov (United States)

    Bourke, Jenny; Nembhard, Wendy N; Wong, Kingsley; Leonard, Helen

    2017-09-01

    To investigate survival up to early adulthood for children with intellectual disability and compare their risk of mortality with that of children without intellectual disability. This was a retrospective cohort study of all live births in Western Australia between January 1, 1983 and December 31, 2010. Children with an intellectual disability (n = 10 593) were identified from the Western Australian Intellectual Disability Exploring Answers Database. Vital status was determined from linkage to the Western Australian Mortality database. Kaplan-Meier product limit estimates and 95% CIs were computed by level of intellectual disability. Hazard ratios (HRs) and 95% CIs were calculated from Cox proportional hazard regression models adjusting for potential confounders. After adjusting for potential confounders, compared with those without intellectual disability, children with intellectual disability had a 6-fold increased risk of mortality at 1-5 years of age (adjusted HR [aHR] = 6.0, 95%CI: 4.8, 7.6), a 12-fold increased risk at 6-10 years of age (aHR = 12.6, 95% CI: 9.0, 17.7) and a 5-fold increased risk at 11-25 years of age (aHR = 4.9, 95% CI: 3.9, 6.1). Children with severe intellectual disability were at even greater risk. No difference in survival was observed for Aboriginal children with intellectual disability compared with non-Aboriginal children with intellectual disability. Although children with intellectual disability experience higher mortality at all ages compared with those without intellectual disability, the greatest burden is for those with severe intellectual disability. However, even children with mild to moderate intellectual disability have increased risk of death compared with unaffected children. Copyright © 2017 Elsevier Inc. All rights reserved.

  18. Narrative ethics in nursing for persons with intellectual disabilities.

    Science.gov (United States)

    Meininger, Herman P

    2005-04-01

    Both in The Netherlands and in Britain, practices of 'life story work' have emerged in nursing for persons with intellectual disabilities. The narrative approach to care and support may at the same time be considered as an attempt to compensate for the 'disabled authorship' of many persons with intellectual disabilities and as a sign of controversy with standard practices of diagnosis and treatment that tend to neglect the personal identities of both clients and care givers, their particular historical and relational contexts and their spiritual needs. This paper argues that narrative ethics not only offers an appropriate moral framework for practices of life story work, but that these practices are a narrative ethics in action. Starting with an account of the concept of 'life story work' as it has been introduced in nursing practices in the field of intellectual disability, the paper explains its relationship with key characteristics of narrative ethics. The teleological dimension in narrative ethics and in practices of life story work sparks off a dialectic process of understanding of the client and self-understanding of the care giver. It also invites a respect for life in its openness toward the future and presupposes an openness toward other possible versions of the life narrative. The phenomenological and hermeneutic-interpretative methodologies in narrative ethics aim at a 'sudden moment of intimacy' in relationships of nurses and clients. The 'epiphany' of this essential moment of recognition, insight and engagement cannot, however, be brought about by methodology.

  19. A review of suicidality in persons with intellectual disability.

    Science.gov (United States)

    Merrick, Joav; Merrick, Efrat; Lunsky, Yona; Kandel, Isack

    2006-01-01

    It has been assumed that impaired intellectual capacity could act as a buffer to suicidality in the population of persons with intellectual disability (ID), developmental disability or mental retardation. The few studies conducted contest this assumption and in fact findings show that the characteristics of suicidality in that population were very similar to that in persons without intellectual disability. This paper reviews the studies conducted and describes the symptomatology in this population, risk factors, screening and intervention. Professionals working with this population should therefore be aware of and assess for this behavior, since in one study it was found that many caregivers were unaware of suicidality in their clients. Only two studies had systematically examined differences between suicidal and non-suicidal individuals with ID with regard to risk factors. Risk factors found were history of prior psychiatric hospitalization, comorbid physical disabilities, loneliness, sadness, depression or anxiety. There is limited research on intervention for suicidal behavior in the ID population, but professionals should consider risk factors for suicide in this population and intervene when suicidal risk/behavior is found.

  20. A survey on awareness of parents about friendship between their children with an intellectual disability and children without a disability

    OpenAIRE

    渋谷, 真二; 今野, 和夫; SHIBUYA, Shinji; KONNO, Kazuo

    2009-01-01

    The awareness of parents about friendship between their children with an intellectual disability and children without a disability is an important factor for their children to make friends without a disability. A questionnare survey was used to parents of upper secondary department of special schools for students with an intellectual disability. They thought that their children had fewer opportunities to get involved with children without a disability. Many of them wished that their children ...

  1. EDUCATIONAL POLICIES AND PRACTICAL IMPLICATIONS FOR CHILDREN WITH INTELLECTUAL DISABILITY IN REPUBLIC OF MACEDONIA

    Directory of Open Access Journals (Sweden)

    Aleksandra Karovska Ristovska

    2017-12-01

    Full Text Available Educational policy for children with intellectual disability in Republic of Macedonia is not always consistent with the practical implications. The subject of this research was to gain an insight into the current condition of the persons with intellectual disabilities in Macedonia, before all an insight into the barriers that they are facing in their attempts to access educational information and services. This was done through conducting a qualitative (desk-top analyses of the national legislations; semi-structured interviews with parents of persons with intellectual disabilities and focus groups with relevant stakeholders and a quantitative research (quality of life research for the disabled persons. In the research a total number of 213 examinees were included. As in many other cases, and in many other countries, policy and practice are not always coherent. Legislation in the area of education in our country has to be modified and accommodated to the needs of the persons with disabilities and their parents or care-givers. The final conclusion from our research is that the persons with ID are still on the margins of society, and they lead everyday battles to prove that their needs must be taken into consideration in context of their human rights. Although awareness for the importance of the rightful treatment of this problem is not on a satisfactory level, still we can notice a shift in perception and liberation of prejudice.

  2. Current evidence on antenatal care provision for women with intellectual disabilities: A systematic review.

    Science.gov (United States)

    Homeyard, Claire; Montgomery, Elsa; Chinn, Deborah; Patelarou, Evridiki

    2016-01-01

    communicated during pregnancy which was often text based. Maternity care providers need to make adjustments to their services so that antenatal communication, information and care is appropriate for this group of women. Midwives identified that they lacked knowledge in this area and wanted antenatal guidance on how to meet the care and communication needs of women with intellectual disabilities. Copyright © 2015 Elsevier Ltd. All rights reserved.

  3. The World Report on Disability and People with Intellectual Disabilities

    Science.gov (United States)

    Officer, Alana; Shakespeare, Tom

    2013-01-01

    The "World Report on Disability" was requested by the World Health Assembly, the governing body of the World Health Organization (WHO). Because disability is broader than health, WHO partnered with the World Bank. The "World Report" was published in 2011 and provides a comprehensive scientific analysis on the global situation…

  4. Healthcare for persons with intellectual disability in the community

    Directory of Open Access Journals (Sweden)

    David Alan Ervin

    2014-07-01

    Full Text Available Introduction While there has been impressive progress in creating and improving community healthcare delivery systems that support people with intellectual and developmental disabilities (IDD, there is much more that can and should be done. Method This paper offers a review of healthcare delivery concepts on which new models are being developed, while also establishing an historical context. We review the need for creating fully integrated models of healthcare, and at the same time offer practical considerations that range from specific healthcare delivery system components to the need to expand our approach to training healthcare providers. The models and delivery systems, and the areas of needed focus in their development are reviewed to set a starting point for more and greater work going forward. Conclusions Today, we celebrate longer lifespans of people with IDD, increased attention to the benefits of healthcare that is responsive to their needs, and the development of important healthcare delivery systems that are customized to their needs. We also know that the growing body of research on health status offers incentive to continue developing healthcare structures for people with IDD by training healthcare providers about the needs of people with IDD, by establishing systems of care that integrate acute healthcare with long term services and support, by developing IDD medicine as a specialty, and by building health promotion and wellness resources to provide people with IDD a set of preventative health supports.

  5. The role of ethnicity in clinical psychopathology and care pathways of adults with intellectual disabilities.

    LENUS (Irish Health Repository)

    Tsakanikos, Elias

    2011-04-27

    The objective of this study was to explore whether people with intellectual disability from ethnic minority groups have higher rates of mental health problems and access different care pathways than their White counterparts. Clinical and socio-demographic data were collected for 806 consecutive new referrals to a specialist mental health service for people with intellectual disabilities in South London. Referrals were grouped according to their ethnic origin. The analyses showed that there was an over-representation of referrals from ethnic minority groups with diagnoses of schizophrenia spectrum disorder. In addition, Black participants were more likely to have an autistic spectrum disorder. Referrals of ethnic minority groups were considerably younger than White referrals, and less likely to be in supported residences. The results are discussed in the context of cultural and familial factors in particular ethnic groups that may play an important role in accessing and using mental health services.

  6. "It Is Only Natural….": Attitudes of Young People with Intellectual Disabilities toward Sexuality in Greece

    Science.gov (United States)

    Karellou, Ioanna

    2017-01-01

    Although there is an increasing awareness of the rights of people with intellectual disabilities, limited progress has been made in supporting people with intellectual disabilities to create and sustain intimate personal relationships in Greece. This article looks at the attitudes of 66 adolescents and young adults with intellectual disabilities…

  7. Intellectual Disabilities and Neglectful Parenting: Preliminary Findings on the Role of Cognition in Parenting Risk

    OpenAIRE

    Azar, Sandra T.; Stevenson, Michael T.; Johnson, David R.

    2012-01-01

    Parents with intellectual disabilities (PID) are over-represented in the child protective services (CPS) system. This study examined a more nuanced view of the role of cognition in parenting risk. Its goal was to validate a social information processing (SIP) model of child neglect that draws on social cognition research and advances in neuroscience. Mothers who had CPS child neglect cases were compared with mothers with no CPS involvement on a set of SIP factors. Mothers with low IQs were ov...

  8. Transition of an adolescent with mild intellectual and developmental disabilities to labour market

    OpenAIRE

    Bošnjak, Katarina

    2016-01-01

    One of the most important life decisions one takes as an adolescent is the choice of education and future career.This decision becomes even more difficult when the possibilities of further training are limited as they are in the case of the adolescents finishing school programmes which had been adapted to lower educational standards i.e. for persons with mild intellectual and developmental disabilities.We researched career counselling services in elementary and middle schools and found that...

  9. Feasibility of Eight Physical Fitness Tests in 1,050 Older Adults with Intellectual Disability : Results of the Healthy Ageing with Intellectual Disabilities Study

    NARCIS (Netherlands)

    Hilgenkamp, Thessa I. M.; van Wijck, Ruud; Evenhuis, Heleen M.

    Although physical fitness is relevant for well-being and health, knowledge on the feasibility of instruments to measure physical fitness in older adults with intellectual disability (ID) is lacking. As part of the study Healthy Ageing with Intellectual Disabilities with 1,050 older clients with ID

  10. Developing Reception Competence in Children with a Mild Intellectual Disability

    Directory of Open Access Journals (Sweden)

    Ana Koritnik

    2015-06-01

    Full Text Available The paper presents research paradigms which study factors that allow influencing the language development of children with mild intellectual disabilities to the greatest extent possible. Special attention is dedicated to the development of the reception competence with the use of reception didactics methods based on a relatively frequent use of less demanding non-language semiotic functions. The core of the paper presents results of an experimental case study (on a sample of five children with a mild intellectual disability over a one school year period, through which the reception competence in these children was developed with a systematic use of an adapted communication model of literary education as an experimental factor. The results have confirmed the initially set hypothesis about reception progress.

  11. Parenting children with intellectual disabilities in Malawi: the impact that reaches beyond coping?

    Science.gov (United States)

    Masulani-Mwale, C; Mathanga, D; Silungwe, D; Kauye, F; Gladstone, M

    2016-11-01

    Rates of disability are high in resource poor settings with 85% of children with disabilities living in these settings. Long-term caregiving for disabled children is associated with fatigue, financial difficulties, parenting distress and other psychological issues. While such parents of children have repeatedly highlighted their feelings of discrimination, stigma and exclusion, leading to mental health issues, there is little research from the developing world addressing these issues. This study aims to explore psychological experiences of parents caring for children with intellectual disabilities; understand their mechanisms of coping and their psychosocial needs in Malawi. This study used a qualitative phenomenological design. We purposively sampled parents who had children diagnosed with intellectual disability from two clinics in two cities in Malawi. Between January 2015 and March 2015, we conducted 10 focus group discussions and four in-depth interviews. All ethical study procedures were carefully followed. All interviews were tape-recorded, transcribed and translated from vernacular to English. Thematic approach of data analysis was adopted to understand the data. Caring for intellectually disabled children comes with a number of challenges. Parents have limited access to services for their children let alone for their own psychological issues; they experience stigma and discrimination, have mental health issues resulting from the caring role, have suicidal ideas and in some cases have even been coerced by neighbours to kill their disabled child. To manage these issues, most parents cope through their spirituality. Apart from suicide and filicide, the findings of this study are similar to those performed in other countries. It is recommended that parents' psychological issues be managed concurrently when providing services for their children. There is also a need to develop psychosocial training interventions to address the needs of the parents of these

  12. A study on mobility improvement for intellectually disabled student commuters

    Directory of Open Access Journals (Sweden)

    Fumihiko Nakamura

    2017-07-01

    Overall, our findings suggested that to actually implement mobility support in school commuting environments in a way that will improve the mobility of intellectually disabled people requires not only the cooperation of schools, but also contributions from transport operators, road administrators, and traffic administrators. Because the contributions of these entities are essential, awareness-raising activities and a system for promoting common understanding among them are vital.

  13. Gait Transitions of Persons with and without Intellectual Disability

    Science.gov (United States)

    Agiovlasitis, Stamatis; Yun, Joonkoo; Pavol, Michael J.; McCubbin, Jeffrey A.; Kim, So-Yeun

    2008-01-01

    This study examined whether the walk-to-run transition speed (W-RTS) and the run-to-walk transition speed (R-WTS) were different or more variable between participants with and without intellectual disability (ID). Nine adults with ID and 10 adults without ID completed in a series of walk-to-run and run-to-walk trials on a treadmill. W-RTS and…

  14. Neuromuscular fatigue and recovery profiles in individuals with intellectual disability

    OpenAIRE

    Borji , Rihab; Zghal , Firas; Zarrouk , Nidhal; Martin , Vincent; Sahli , Sonia; Rebai , Haithem

    2017-01-01

    International audience; Purpose: This study aimed to explore neuromuscular fatigue and recovery profiles in individuals with intellectual disability (ID) after exhausting submaximal contraction.Methods: Ten men with ID were compared to 10 men without ID. The evaluation of neuromuscular function consisted in brief (3 s) isometric maximal voluntary contraction (IMVC) of the knee extension superimposed with electrical nerve stimulation before, immediately after, and during 33 min after an exhaus...

  15. Forensic aspects of intellectual disabilities and autism spectrum disorders

    OpenAIRE

    Nugent, Stella

    2016-01-01

    Overview This thesis reviewed forensic aspects of Intellectual Disabilities (ID) and Autism Spectrum Disorder (ASD). Chapter two was a case study where an individual with ID and ASD who exhibited forensic/Challenging Behaviour (CB) was assessed and intervention offered. Chapter three then focussed on the assessment of people with ID and ASD by critiquing the Wechsler Adult Intelligence Scale (WAIS), version 3 and 4 (WAIS-III & WAIS-IV) (Wechsler, 1997; Wechsler, 2008a, 2008b, 2008c) and ...

  16. Parenting of children with borderline to mild intellectual disability

    OpenAIRE

    Kleefman, Marijke

    2015-01-01

    Raising children with borderline to mild intellectual disability (BMID) may cause parenting stress, especially when the child with BMID has psychosocial problems. To improve support, it is important to have a better understanding of the effectiveness of interventions to reduce problems in raising such children and of the problems these parents are dealing with. Therefore, the aim of this thesis was to assess the effectiveness of the parenting support program Stepping Stones Triple P (SSTP). F...

  17. Comparison of Measures of Ability in Adolescents with Intellectual Disability

    OpenAIRE

    Mungkhetklang, Chantanee; Crewther, Sheila G.; Bavin, Edith L.; Goharpey, Nahal; Parsons, Carl

    2016-01-01

    Finding the most appropriate intelligence test for adolescents with Intellectual Disability (ID) is challenging given their limited language, attention, perceptual, and motor skills and ability to stay on task. The study compared performance of 23 adolescents with ID on the Wechsler Intelligence Scale for Children-Fourth Edition (WISC-IV), one of the most widely used intelligence tests, and three non-verbal IQ tests, the Raven's Colored Progressive Matrices (RCPM), the Test of Non-verbal Inte...

  18. Role of nucleosome remodeling in neurodevelopmental and intellectual disability disorders

    Directory of Open Access Journals (Sweden)

    Alberto J Lopez

    2015-04-01

    Full Text Available It is becoming increasingly important to understand how epigenetic mechanisms control gene expression during neurodevelopment. Two epigenetic mechanisms that have received considerable attention are DNA methylation and histone acetylation. Human exome sequencing and genome-wide association studies have linked several neurobiological disorders to genes whose products actively regulate DNA methylation and histone acetylation. More recently, a third major epigenetic mechanism, nucleosome remodeling, has been implicated in human developmental and intellectual disability disorders. Nucleosome remodeling is driven primarily through nucleosome remodeling complexes with specialized ATP-dependent enzymes. These enzymes directly interact with DNA or chromatin structure, as well as histone subunits, to restructure the shape and organization of nucleosome positioning to ultimately regulate gene expression. Of particular interest is the neuron-specific Brg1/hBrm Associated Factor (nBAF complex. Mutations in nBAF subunit genes have so far been linked to Coffin-Siris syndrome, Nicolaides-Baraitser syndrome, schizophrenia, and Autism Spectrum Disorder. Together, these human developmental and intellectual disability disorders are powerful examples of the impact of epigenetic modulation on gene expression. This review focuses on the new and emerging role of nucleosome remodeling in neurodevelopmental and intellectual disability disorders and whether nucleosome remodeling affects gene expression required for cognition independently of its role in regulating gene expression required for development.

  19. NDST1 missense mutations in autosomal recessive intellectual disability.

    Science.gov (United States)

    Reuter, Miriam S; Musante, Luciana; Hu, Hao; Diederich, Stefan; Sticht, Heinrich; Ekici, Arif B; Uebe, Steffen; Wienker, Thomas F; Bartsch, Oliver; Zechner, Ulrich; Oppitz, Cornelia; Keleman, Krystyna; Jamra, Rami Abou; Najmabadi, Hossein; Schweiger, Susann; Reis, André; Kahrizi, Kimia

    2014-11-01

    NDST1 was recently proposed as a candidate gene for autosomal recessive intellectual disability in two families. It encodes a bifunctional GlcNAc N-deacetylase/N-sulfotransferase with important functions in heparan sulfate biosynthesis. In mice, Ndst1 is crucial for embryonic development and homozygous null mutations are perinatally lethal. We now report on two additional unrelated families with homozygous missense NDST1 mutations. All mutations described to date predict the substitution of conserved amino acids in the sulfotransferase domain, and mutation modeling predicts drastic alterations in the local protein conformation. Comparing the four families, we noticed significant overlap in the clinical features, including both demonstrated and apparent intellectual disability, muscular hypotonia, epilepsy, and postnatal growth deficiency. Furthermore, in Drosophila, knockdown of sulfateless, the NDST ortholog, impairs long-term memory, highlighting its function in cognition. Our data confirm NDST1 mutations as a cause of autosomal recessive intellectual disability with a distinctive phenotype, and support an important function of NDST1 in human development. © 2014 Wiley Periodicals, Inc.

  20. PHYSICAL AND SPORT ACTIVITIES OF INTELLECTUALLY DISABLED INDIVIDUALS

    Directory of Open Access Journals (Sweden)

    Zoran Stanišić

    2012-06-01

    Full Text Available The low level of physical fitness of intellectually disabled individuals is most often the result of a sedentary lifestyle and the lack of the possibility for these individuals to take part in various forms of physical activity, and as a consequence these individuals are often unable to take part in any form of planned physical activities, are unable to adequately perform everyday activities and have limited abilities for performing workrelated duties. Regular physical activity can have a preventive effect, can reduce health risks and prevent the onset of various illnesses, as well as to promote an active lifestyle and increase physical and work capacities among the members of this particular population. Sport can play an important role in the life of individuals with intellectual disability as it represents a good basis for the development of physical and cognitive abilities. Team sports, which include interaction among a large number of people, a decision-making processes in a variety of situations and the understanding of the game itself in its constituent parts can be used as an effective and practical treatment of individuals with intellectual disability.

  1. Expectations from different perspectives on future work outcome of young adults with intellectual and developmental disabilities

    NARCIS (Netherlands)

    Holwerda, Anja; Brouwer, Sandra; de Boer, Michiel R.; Groothoff, Johan W.; van der Klink, Jac J. L.

    2015-01-01

    Purpose Expectations strongly influence future employment outcomes and social networks seem to mediate employment success of young adults with intellectual and developmental disabilities. The aim of this study is to examine the expectations of young adults with intellectual and developmental

  2. Expectations from Different Perspectives on Future Work Outcome of Young Adults with Intellectual and Developmental Disabilities

    NARCIS (Netherlands)

    Holwerda, A.; Brouwer, S.; de Boer, M.R.; Groothoff, J.W.; van der Klink, J.J.L.

    2015-01-01

    Purpose Expectations strongly influence future employment outcomes and social networks seem to mediate employment success of young adults with intellectual and developmental disabilities. The aim of this study is to examine the expectations of young adults with intellectual and developmental

  3. Expectations from Different Perspectives on Future Work Outcome of Young Adults with Intellectual and Developmental Disabilities

    NARCIS (Netherlands)

    Holwerda, Anja; Brouwer, Sandra; de Boer, Michiel R.; Groothoff, Johan W.; van der Klink, Jac J. L.

    Purpose Expectations strongly influence future employment outcomes and social networks seem to mediate employment success of young adults with intellectual and developmental disabilities. The aim of this study is to examine the expectations of young adults with intellectual and developmental

  4. Understanding suicide and disability through three major disabling conditions: Intellectual disability, spinal cord injury, and multiple sclerosis.

    Science.gov (United States)

    Giannini, Margaret J; Bergmark, Brian; Kreshover, Samantha; Elias, Eileen; Plummer, Caitlin; O'Keefe, Eileen

    2010-04-01

    Disability is not a category of disease but rather relates to the physical, sensory, cognitive, and/or mental disorders that substantially limit one or more major life activities. These functional limitations have been found to be predictive of suicide, with psychiatric comorbidities increasing the risk for suicide. Enormous gaps exist in the understanding of the relationship between disability and suicide. We reviewed the current literature addressing the prevalence of and risk factors for suicide among persons with three major disabling conditions and identify priorities for future research. We performed a literature review investigating the relationship between three major disabilities (intellectual disability, spinal cord injury, multiple sclerosis) and suicide. To ensure thorough evaluation of the available literature, we searched PubMed, the Cochrane Library, and Google Scholar with terms including "suicide," "disability," "intellectual disability," "spinal cord injury," "multiple sclerosis," and permutations thereof. By this method we evaluated 110 articles and included 21 in the review. Suicide rates are significantly higher among persons with multiple sclerosis and spinal cord injury than in the general population. A more nuanced picture of suicide rates and risk factors exists for the intellectual disability population, in which it appears that rates of suicide risk factors are higher than among the general population while suicide rates may be lower. The highest rates of suicide are reported among study populations of persons with multiple sclerosis, followed by persons with spinal cord injury, and then individuals with intellectual disability. Suicide among persons with disabilities is a complex and pressing public health concern. Urgent research priorities include (1) valid estimates of suicide rates among persons with disabilities by age cohort; (2) assessment of the predictive importance of suicide risk factors; and (3) determination of best

  5. Social networks of adults with an intellectual disability from South Asian and White communities in the United Kingdom: A comparison.

    Science.gov (United States)

    Bhardwaj, Anjali K; Forrester-Jones, Rachel V E; Murphy, Glynis H

    2018-03-01

    Little research exists comparing the social networks of people with intellectual disability (ID) from South Asian and White backgrounds. This UK study reports on the barriers that South Asian people with intellectual disability face in relation to social inclusion compared to their White counterparts. A mixed-methods research design was adopted to explore the social lives of 27 men (15 White; 12 South Asian) and 20 women (10 White; 10 South Asian with intellectual disability). Descriptive and parametric tests were used to analyse the quantitative data. The average network size of the whole group was 32 members. South Asian participants had more family members whilst White participants had more service users and staff in their networks; 96% network members from White intellectual disability group were also of White background, whilst the South Asian group had mixed ethnic network members. Social networks of individuals with intellectual disability in this study were found to be larger overall in comparison with previous studies, whilst network structure differed between the White and South Asian population. These differences have implications relating to future service planning and appropriateness of available facilities. © 2017 John Wiley & Sons Ltd.

  6. Prevalence of Overweight and Obesity in Children with Intellectual Disabilities in Korea

    Science.gov (United States)

    Choi, Eunsook; Park, HyunJu; Ha, Yeongmi; Hwang, Won Ju

    2012-01-01

    Background: Overweight and obesity in children with intellectual disabilities may be a major health threat. The purpose of this study was to examine the prevalence of overweight and obesity in Korean children with intellectual disabilities aged 7-18 years who did not have specific genetic syndromes or physical disabilities. Materials and methods:…

  7. Social Inclusion and People with Intellectual Disability and Challenging Behaviour: A Systematic Review

    Science.gov (United States)

    Bigby, Christine

    2012-01-01

    Background: Social inclusion is central to disability policies internationally. The high risk of social exclusion for people with intellectual disability is compounded for those with challenging behaviour. Method: A systematic literature review examined how social inclusion of people with intellectual disability and challenging behaviour has been…

  8. Telepsychiatry and Virtual Reality an the Teatment of Patients with Intellectual and Developmental Disabilities.

    Science.gov (United States)

    Krysta, Krzysztof; Krzystanek, Marek; Cubała, Wiesław J; Wiglusz, Mariusz S; Jakuszkowiak-Wojten, Katarzyna; Gałuszko-Węgielnik, Maria; Czarnowska-Cubała, Monika; Szarmach, Joanna; Włodarczyk, Adam; Janas-Kozik, Małgorzata

    2017-09-01

    Treatment and rehabilitation of people with intellectual and developmental disabilities is a multidisciplinary challenge, which require implementing new attitudes. The use of modern technology solutions like telepsychiatry or virtual reality may be a valuable addition to the traditional methods. The objective of this review was to explore the usability of new technological solutions in this special population of patients. The search in the PubMed was conducted using the following terms: (intellectual disability (Title/Abstract) OR developmental disability OR learning disorder (Title/Abstract)) AND virtual reality (Title/Abstract) OR telepsychiatry OR telemedicine OR e-mental health AND English (lang) AND (1995/01/01(PDAT): 2017/07/31(PDAT)). Telepsychiatry may be a useful tool in situations, when the direct access to professional assistance is limited, in solving particular problems like e.g. managing challenging behavior, also to support patients' parents and for diagnostic and educational purposes. Virtual reality can be a safe and effective method of improving different skills, developing physical fitness, and enriching the ways of spending the leisure time. Using modern technology is a relatively new and promising field in which new ideas may develop to support the already existing services for patients with intellectual and developmental disabilities.

  9. Family-Peer Linkages for Children with Intellectual Disability and Children with Learning Disabilities.

    Science.gov (United States)

    Floyd, Frank J; Olsen, Darren L

    2017-09-01

    Family interactions are potential contexts for children with intellectual and learning disabilities to develop skillful social behaviors needed to relate effectively with peers. This study examined problem solving interactions within families of elementary school-age children (7-11 years) with intellectual disability (n = 37), specific learning disabilities (n =48), and without disabilities (n = 22). After accounting for group differences in children's behaviors and peer acceptance, across all groups, mothers' behaviors that encouraged egalitarian problem solving predicted more engaged and skillful problem solving by the children. However, mothers' controlling, directive behaviors predicted fewer of these behaviors by the children. Fathers' behaviors had mixed associations with the children's actions, possibly because they were reactive to children's unengaged and negative behaviors. For the children, greater involvement, more facilitative behaviors, and less negativity with their families were associated with greater acceptance from their peers, supporting family-peer linkages for children at risk for peer rejection.

  10. Teaching menstrual care skills to intellectually disabled female students.

    Science.gov (United States)

    Altundağ, Sebahat; Çalbayram, Nazan Çakırer

    2016-07-01

    The aim of this study was to teach pad replacement skills to intellectually disabled adolescent female students during their menstruation periods by demonstrating on a dummy. It may be difficult to make intellectually disabled adolescents achieve self-care during menstruation. In addition, there are difficulties experienced in explaining menstruation, such as physical changes and the practice of cleaning during this period. The study used a 'One group pretest and post-test model'. The study was performed in a special educational institution. The population consisted of 77 female students in the high school section. Calculation of a sample size was not attempted, and 54 students with no attendance issues agreed to take part in the study and were included. In this work, we found that pad replacement training significantly changed the scores of mentally disabled adolescents before and after training. Our training yielded positive results, and the population improved their skills at all stages of skill building. Training adolescents with mental disabilities helped them gain hygiene habits. Performance of these trainings occurs at the beginning of menstrual hygiene education. To achieve improved success in life, it is important that adolescents assume the responsibility of self-care and manage sustained care activity on their own. © 2016 John Wiley & Sons Ltd.

  11. Patient satisfaction with a hepatitis B vaccination programme among persons with an intellectual disability.

    LENUS (Irish Health Repository)

    Cooney, Fionnuala

    2009-09-01

    This article demonstrates that a patient satisfaction survey can be carried out to evaluate the acceptability of a hepatitis B vaccination programme among persons with an intellectual disability. In this exploratory study, involving six clients, 41 care staff and three managers of intellectual disability services, core themes were identified on the acceptability of the programme. The following recommendations are made: a respectful attitude should be shown to all clients by the healthcare providers; appropriate information about the programme should be provided that is tailored to the needs and receptive capability of all recipients and their carers; the intervention should be delivered in an environment, and by healthcare personnel, familiar to clients; carers should be attentive to the possibility of adverse effects; and explicit, ethically stringent policies should be in place on the use of physical restraint. The article makes suggestions regarding future work in assessing patient satisfaction among this client group.

  12. Sibling Caregivers of People With Intellectual and Developmental Disabilities: Sociodemographic Characteristics and Material Hardship Prevalence.

    Science.gov (United States)

    Sonik, Rajan A; Parish, Susan L; Rosenthal, Eliana S

    2016-10-01

    In growing numbers, people with intellectual and developmental disabilities are outliving their parents, or at least their parents' ability to care for them. Consequently, adult siblings without intellectual and developmental disabilities are increasingly taking on primary caregiving responsibilities. However, adult siblings have received little study generally, and sibling caregivers have received even less. We used nationally representative data from the Survey of Income and Program Participation (SIPP) to describe the social characteristics and material hardship levels of sibling caregivers, in comparison to the general working age adult population. This study finds moderate material hardship to be pervasive among sibling caregivers, though extreme levels of hardship are possibly being abated somewhat through public benefit programs. Implications for greater service needs are discussed.

  13. Making work fit care: reconciliation strategies used by working mothers of adults with intellectual disabilities.

    Science.gov (United States)

    Chou, Yueh-Ching; Fu, Li-yeh; Chang, Heng-Hao

    2013-03-01

    This study explored the experiences of working mothers with an adult child with intellectual disabilities to understand how they reconcile paid work and care responsibilities. Fifteen working mothers in Taiwan with an adult child with intellectual disabilities were interviewed, and an interpretative phenomenological approach was adopted for data collection and analysis. All included mothers prioritized their caregiving role over paid work. The strategies used by these mothers to make paid work fit with caregiving included having strong social networks and informal support for their care work, use of formal services, personal religious beliefs and positive attitudes towards care, as well as having flexible working hours due to self-employment, good relations with employers, working positions and work locations. Formal systems, which include both welfare and labour policies, need to be responsive to and involved in supporting these working mothers, especially those who lack good personal networks. © 2012 Blackwell Publishing Ltd.

  14. A study of behaviour problems and psychiatric disorders among people with intellectual disability

    OpenAIRE

    Myrbakk, Even

    2008-01-01

    The present thesis investigates behaviour problems and their relationship to psychiatric disorders in people with intellectual disability living in the northern part of Norway, as well as the concordances between four of the most commonly used assessment instruments for psychiatric disorders in people with intellectual disability. A total of one hundred and eighty-one individuals with intellectual disability living in the counties of Nordland, Troms and Finnmark participated in the studies. ...

  15. Ask: a health advocacy program for adolescents with an intellectual disability: a cluster randomised controlled trial

    Directory of Open Access Journals (Sweden)

    Lennox Nicholas

    2012-09-01

    Full Text Available Abstract Background Adolescents with intellectual disability often have poor health and healthcare. This is partly as a consequence of poor communication and recall difficulties, and the possible loss of specialised paediatric services. Methods/Design A cluster randomised trial was conducted with adolescents with intellectual disability to investigate a health intervention package to enhance interactions among adolescents with intellectual disability, their parents/carers, and general practitioners (GPs. The trial took place in Queensland, Australia, between February 2007 and September 2010. The intervention package was designed to improve communication with health professionals and families’ organisation of health information, and to increase clinical activities beneficial to improved health outcomes. It consisted of the Comprehensive Health Assessment Program (CHAP, a one-off health check, and the Ask Health Diary, designed for on-going use. Participants were drawn from Special Education Schools and Special Education Units. The education component of the intervention was delivered as part of the school curriculum. Educators were surveyed at baseline and followed-up four months later. Carers were surveyed at baseline and after 26 months. Evidence of health promotion, disease prevention and case-finding activities were extracted from GPs clinical records. Qualitative interviews of educators occurred after completion of the educational component of the intervention and with adolescents and carers after the CHAP. Discussion Adolescents with intellectual disability have difficulty obtaining many health services and often find it difficult to become empowered to improve and protect their health. The health intervention package proposed may aid them by augmenting communication, improving documentation of health encounters, and improving access to, and quality of, GP care. Recruitment strategies to consider for future studies in this population

  16. Ask: a health advocacy program for adolescents with an intellectual disability: a cluster randomised controlled trial

    Science.gov (United States)

    2012-01-01

    Background Adolescents with intellectual disability often have poor health and healthcare. This is partly as a consequence of poor communication and recall difficulties, and the possible loss of specialised paediatric services. Methods/Design A cluster randomised trial was conducted with adolescents with intellectual disability to investigate a health intervention package to enhance interactions among adolescents with intellectual disability, their parents/carers, and general practitioners (GPs). The trial took place in Queensland, Australia, between February 2007 and September 2010. The intervention package was designed to improve communication with health professionals and families’ organisation of health information, and to increase clinical activities beneficial to improved health outcomes. It consisted of the Comprehensive Health Assessment Program (CHAP), a one-off health check, and the Ask Health Diary, designed for on-going use. Participants were drawn from Special Education Schools and Special Education Units. The education component of the intervention was delivered as part of the school curriculum. Educators were surveyed at baseline and followed-up four months later. Carers were surveyed at baseline and after 26 months. Evidence of health promotion, disease prevention and case-finding activities were extracted from GPs clinical records. Qualitative interviews of educators occurred after completion of the educational component of the intervention and with adolescents and carers after the CHAP. Discussion Adolescents with intellectual disability have difficulty obtaining many health services and often find it difficult to become empowered to improve and protect their health. The health intervention package proposed may aid them by augmenting communication, improving documentation of health encounters, and improving access to, and quality of, GP care. Recruitment strategies to consider for future studies in this population include ensuring potential

  17. Family-centredness of professionals who support people with profound intellectual and multiple disabilities: validation of the Dutch 'Measure of Processes of Care for Service Providers' (MPOC-SP-PIMD).

    Science.gov (United States)

    Jansen, Suzanne L G; van der Putten, Annette A J; Post, Wendy J; Vlaskamp, Carla

    2014-07-01

    A Dutch version of the 'Measure of Processes of Care for Service Providers' (MPOC-SP) was developed to determine the extent to which professionals apply the principles of family-centred care in the rehabilitation of children with physical disabilities. However, no data were available on the reliability and construct validity of this instrument when it comes to supporting people with profound intellectual and multiple disabilities (PIMD). This study aimed to validate an adapted version of the Dutch MPOC-SP for assessing the family-centred behaviours of professionals who support this group (MPOC-SP-PIMD). A total of 105 professionals took part in the study. A Mokken scale analysis was conducted to determine whether the instrument satisfied the assumptions of both monotone homogeneity and double monotonicity. Loevinger's scalability coefficient (H) was used for the scalability of the entire scale and of each item separately. Rho was calculated as a measure of the internal consistency of the scales. The analyses resulted in two scales: a nine-item scale interpreted as 'Showing Interpersonal Sensitivity', with H=.39 and rho=.76, and a seven-item scale interpreted as 'Treating People Respectfully', with H=.49 and rho=.78. A validated version of the MPOC-SP-PIMD, suitable for supporting people with PIMD, consists of a subset of two scales from the original Dutch MPOC-SP. This instrument can be used to compare the family-centredness of professionals with parent's expectations and views. This information can be used in practice to match the support to the needs of the parents and family of the child with PIMD. Copyright © 2014 Elsevier Ltd. All rights reserved.

  18. Do individuals with intellectual disability have a lower peak heart rate and maximal oxygen uptake?

    Science.gov (United States)

    Hilgenkamp, Thessa Irena Maria; Baynard, Tracy

    2017-12-12

    Individuals with intellectual disability (ID) have very low physical activity and low peak oxygen uptake (VO 2peak ), potentially explained by physiologically lower peak heart rates (HR peak ). The present authors performed a retrospective analysis of a large data set of individuals with intellectual disability (n = 100), with Down syndrome (DS) (n = 48) and without intellectual disability (n = 224) using multiple linear regression analyses, to determine if individuals with intellectual disability exhibit lower HR peak and VO 2peak than individuals without intellectual disability, controlling for age, sex and body mass index (BMI). Individuals with intellectual disability on average have significantly lower HR peak and VO 2peak than individuals without intellectual disability, even when controlling VO 2peak for the lower HR peak . This study suggests potential physiological differences in individuals with intellectual disability and warrants further investigation to determine their relevance to physical activity promotion and exercise testing in individuals with intellectual disability. © 2017 John Wiley & Sons Ltd.

  19. 76 FR 68486 - President's Committee for People With Intellectual Disabilities: Committee Meeting via Conference...

    Science.gov (United States)

    2011-11-04

    ...) should notify Genevieve Swift, PCPID Executive Administrative Assistant, at Edith.Swift@acf.hhs.gov , or... Taylor Roach, Senior Advisor, President's Committee for People with Intellectual Disabilities, The...

  20. Are we ignoring the problem of sleep disorder in children with intellectual disabilities?

    LENUS (Irish Health Repository)

    MacCrosain, A M

    2009-12-01

    Sleep problems are more common amongst children with intellectual disability than other children. The implications for families, teachers and classmates, as well as the children themselves, are profound.

  1. Psychiatric morbidity in prisoners with intellectual disabilities: analysis of prison survey data for England and Wales.

    Science.gov (United States)

    Hassiotis, Angela; Gazizova, Dina; Akinlonu, Leah; Bebbington, Paul; Meltzer, Howard; Strydom, Andre

    2011-08-01

    A substantial number of prisoners have intellectual disabilities. We analysed data on a sample drawn from all prisons in England and Wales. Intellectual disability was defined as Quick Test scores equivalent to an IQ of ≤65. We found a significantly higher prevalence of probable psychosis, attempted suicide and cannabis use in prisoners with intellectual disabilities. Presence of intellectual disability was twice as likely to be associated with probable psychosis but the relationship was fully mediated by self-rated health status. It is important to identify this group as early as possible in order to provide timely interventions to cope in adverse environments and manage substance misuse.

  2. The practical implication of comparing how adults with and without intellectual disability respond to music

    DEFF Research Database (Denmark)

    Hooper, Jeff; Wigram, Tony; Carson, Derek

    2011-01-01

    Previous researchers who compared how people with, and without, an intellectual disability respond to music focused on musical aptitude, but not on arousal. This paper presents the background, methodology, and results of a study that selected fifteen different pieces of music, and compared...... the arousal response of adults with (n = 48), and without (n = 48), an intellectual disability. There was a very strong significant positive correlation (rho = 0.831, N = 15, P ... an intellectual disability, can be used appropriately in an intervention predicated for lowering the arousal levels of the intellectually disabled population....

  3. Problem solving verbal strategies in children with mild intellectual disability

    Directory of Open Access Journals (Sweden)

    Gligorović Milica

    2013-01-01

    Full Text Available Problem solving is a process conditioned by the development and application of efficient strategies. The aim of this research is to determine the level of verbal strategic approach to problem solving in children with mild intellectual disability (MID. The sample consists of 93 children with MID, aged between 10 and 14. Intellectual abilities of the examinees are within the defined range for mild intellectual disability (AM=60.45; SD=7.26. The examinees with evident physical, neurological, and emotional disorders were not included in the sample. The closed 20 Questions Test (20Q was used to assess the development and use of verbal strategy, where the examinee is presented with a poster containing 42 different pictures, and instructed to guess the picture selected by the examiner by asking no more than 20 closed questions. Test χ2, and Spearman and Pearson's correlation coefficient were used in statistical analysis. Research results indicate that most children with MID, aged between 10 and 14, use non-efficient strategy in solving the 20 Questions Test. Although strategic approach to problem solving is present in most children (72%, more than half of the examinees (53.5% use an inadequate strategy. Most children with MID have the ability to categorize concepts, however, they do not use it as a strategy in problem solving.

  4. Self-reported care needs of Dutch homeless people with and without a suspected intellectual disability: a 1.5-year follow-up study.

    Science.gov (United States)

    Van Straaten, Barbara; Rodenburg, Gerda; Van der Laan, Jorien; Boersma, Sandra N; Wolf, Judith R L M; Van de Mheen, Dike

    2017-01-01

    without a suspected intellectual disability. Providing care to homeless people with a suspected intellectual disability might require ongoing care and support, also after exiting homelessness. Support services should take this into account when considering their care provision and planning of services. © 2015 John Wiley & Sons Ltd.

  5. Issues in caregiving for older people with intellectual disabilities and their ageing family carers: a review and commentary.

    Science.gov (United States)

    Ryan, Assumpta; Taggart, Laurence; Truesdale-Kennedy, Maria; Slevin, Eamonn

    2014-09-01

    In keeping with worldwide demographic changes and an ageing population, people with intellectual disabilities are living longer and all the evidence suggest that this trend will continue. This 'new' population of older people and their carers will pose challenges for health and social care providers. This paper presents a review of the literature on key issues influencing caregiving for older people with intellectual disabilities and their ageing family carers. The review was undertaken using a framework adapted from the NHS Centre for Reviews and Dissemination. Papers were identified through the use of databases including CINAHL, Science Direct, PsychoInfo, Blackwell Synergy, the Cochrane Library and MEDLINE. The key themes which emerged from the literature and which consequently form the basis of this review include: ageing family carers, future planning and support services. In the context of family caregiving, older people with intellectual disabilities represent a unique group insofar as they are unlikely to be married and therefore have no spouse or dependents to care for them in later life. As a result, parents (usually mothers) have to continue caring for their son or daughter with an intellectual disability as they both grow older, often resulting in a mutually dependent relationship. The caregiving situation is further complicated by poor emergency and future planning and by a lack of appropriate services for this group of individuals. In light of the emergence of a 'new' population of older people with intellectual disabilities, there is an urgent need to develop services and support structures which will enable these individuals and their ageing carers to 'age in place' and when this is no longer possible, to have appropriate alternatives that recognise the duality of their needs as older people and as people with intellectual disabilities. Opportunities for supervision could be one way to increase individuals' awareness of their own role in the team.

  6. A feasibility study of behavioural activation for depressive symptoms in adults with intellectual disabilities.

    Science.gov (United States)

    Jahoda, A; Melville, C A; Pert, C; Cooper, S-A; Lynn, H; Williams, C; Davidson, C

    2015-11-01

    Important work has been carried out adapting cognitive behavioural therapy for people with intellectual disabilities. However, there is a lack of alternative psychological therapies available for people with intellectual disabilities and emotional difficulties. Behavioural activation for depression is less reliant on verbal communication and focuses on increasing purposeful activity and reducing avoidance. This feasibility study involved the development and piloting of an adapted manual of behavioural activation for people with intellectual disabilities. The intervention consisted of 10-12 sessions and a key adaptation was that the therapist worked with the clients alongside a significant other in their life, either a paid carer or family member. Baseline, post-intervention (3 months after entering the study) and 6-month quantitative follow-up data were obtained. Primary outcome data were gathered, concerning depressive symptoms, participants' levels of activity and general well-being. Twenty-three adults with intellectual disabilities with symptoms of depression were recruited from specialist health services. In terms of acceptability, the behavioural activation intervention was well received and only two individuals dropped out, with a further two lost to follow-up. The main measures of depression appeared to be sensitive to change. Pre- to post-intervention data showed a significant reduction in self-report of depressive symptoms with a strong effect size (r = 0.78), that was maintained at follow-up (r = 0.86). Positive change was also obtained for informant reports of depressive symptoms from pre- to post-intervention, with a strong effect size (r = 0.7). Once again, this positive change was maintained at follow-up (r = 0.72). The study suggested that behavioural activation may be a feasible and worthwhile approach to tackling depression in people with intellectual disabilities. However, a randomised controlled trial would be required to establish its

  7. Training on intellectual disability in health sciences: the European perspective

    Science.gov (United States)

    Salvador-Carulla, Luis; Martínez-Leal, Rafael; Heyler, Carla; Alvarez-Galvez, Javier; Veenstra, Marja Y.; García-Ibáñez, Jose; Carpenter, Sylvia; Bertelli, Marco; Munir, Kerim; Torr, Jennifer; Van Schrojenstein Lantman-de Valk, Henny M. J.

    2015-01-01

    Background Intellectual disability (ID) has consequences at all stages of life, requires high service provision and leads to high health and societal costs. However, ID is largely disregarded as a health issue by national and international organisations, as are training in ID and in the health aspects of ID at every level of the education system. Specific aim This paper aims to (1) update the current information about availability of training and education in ID and related health issues in Europe with a particular focus in mental health; and (2) to identify opportunities arising from the initial process of educational harmonization in Europe to include ID contents in health sciences curricula and professional training. Method We carried out a systematic search of scientific databases and websites, as well as policy and research reports from the European Commission, European Council and WHO. Furthermore, we contacted key international organisations related to health education and/or ID in Europe, as well as other regional institutions. Results ID modules and contents are minimal in the revised health sciences curricula and publications on ID training in Europe are equally scarce. European countries report few undergraduate and graduate training modules in ID, even in key specialties such as paediatrics. Within the health sector, ID programmes focus mainly on psychiatry and psychology. Conclusion The poor availability of ID training in health sciences is a matter of concern. However, the current European policy on training provides an opportunity to promote ID in the curricula of programmes at all levels. This strategy should address all professionals working in ID and it should increase the focus on ID relative to other developmental disorders at all stages of life. PMID:25705375

  8. Caregiver awareness of reproductive health issues for women with intellectual disabilities

    Directory of Open Access Journals (Sweden)

    Lin Jin-Ding

    2011-01-01

    Full Text Available Abstract Background Limited attention has been paid to the issue of reproductive health as it affects women with intellectual disabilities, despite reproductive health being a vital issue in public health policy for women in the general population. This paper describes caregiver awareness of reproductive health issues relative to women with intellectual disabilities who are being cared for in welfare institutions in Taiwan. Methods The study employed a cross-sectional, questionnaire-based study which recruited 1,152 caregivers (response rate = 71.87% from 32 registered disability welfare institutions in Taiwan. We classified their understanding/awareness of reproductive health issues into four domains: menstrual (1 and menopause (2 issues, sex education (3, and reproductive health services (4. Each domain had five associated yes/no questions and the total score for the four domains was out of a maximum of 20. Data were analyzed using SPSS 15.0 software. Results We found that most of the caregivers were familiar with matters concerning sex education, menopause, and reproductive health services, but they lacked adequate understanding of issues associated with menstruation in women with ID. Many aspects of reproductive health such as "menstrual pain", "age at menarche", "masturbation", "diet during perimenopause", and "publicly available reproductive health services" were issues in which caregivers lacked adequate knowledge and required further instruction. Logistic regression analysis revealed that female caregivers with a university degree, and those who had experience assisting with reproductive health care were more inclined to have higher reproductive health awareness scores than their counterparts. Conclusions This study highlights that service providers should offer appropriate reproductive health education to institutional caregivers, and that more attention be focused on the personal experiences and concerns of intellectually disabled

  9. Individuals with mild intellectual disability or borderline intellectual functioning in a forensic addiction treatment centre: Prevalence and clinical characteristics

    NARCIS (Netherlands)

    Luteijn, I.; Didden, H.C.M.; Nagel, J.E.L. van der

    2017-01-01

    Knowledge regarding substance-related problems and offending behavior in individuals with mild intellectual disability or borderline intellectual functioning (MBID; IQ 50-85) has increased over the last years, but is still limited. The present study examined differences in prevalence and clinical

  10. Meeting the support needs of persons with mild intellectual disability or borderline intellectual functioning : Still a long way to go

    NARCIS (Netherlands)

    Nouwens, P J G; Smulders, N B M; Embregts, P J C M; van Nieuwenhuizen, C

    2017-01-01

    Background: Among persons with a mild intellectual disability or borderline intellectual functioning, differences in their characteristics imply that a differentiated approach is required to meet their needs. This retrospective study examined whether the history of support/treatment programs and the

  11. Factors Affecting Placement of a Child with Intellectual Disability

    Directory of Open Access Journals (Sweden)

    Isack Kandel

    2005-01-01

    Full Text Available Parents of disabled children often face the question whether or not to keep the child at home or to place them. The choice between the two alternatives resides with the parents and various factors influence their decision. Several researchers have identified these factors, which include child-related parameters, family and parental attitudes, the influence of the social environment, and the external assistance provided to the family. In a pilot study, we attempted to isolate the main factors involved in the parental decision either to keep the child at home or place the child by examining a sample comprised of 50 parents of children suffering severe intellectual disability studying in a special education school and 48 parents of adults with intellectual disability working in sheltered workshops. Each parent filled out a questionnaire used in a study in the United States and results of the research indicated parental-related factors as the dominant factors that delayed the placement of their child in residential care; guilt feelings were the main factor.

  12. A study about siblings in the face of intellectual disability

    Directory of Open Access Journals (Sweden)

    Olga Lizasoain

    2010-05-01

    Full Text Available Research has shown that siblings of a person with intellectual disabilities can present problems of identification and socialization, the need for compensation, early adoption of large responsibilities, feelings of abandonment, guilt, shame or sadness. Nevertheless, if the needs of these brothers and sisters are facing, disability can become a source of personal and family enrichment. This article presents the initial conclusions drawn after a series of personal interviews conducted with siblings of students in a special education school. Awareness of the issue leads us to approach this study with the aim of providing guidelines of intervention to help siblings to minimize the potential negative impact of having a brother or sister with intellectual disabilities, and facilitate the development of attitudes and behaviours that enable them to face stressful situations in a constructive manner. Thanks to the direct experience of those who have been confronted with this situation, is issued to prevent psychosocial problems associated with having a brother or sister with these features.

  13. 77 FR 43335 - Administration on Intellectual and Developmental Disabilities; Agency Information Collection...

    Science.gov (United States)

    2012-07-24

    ... Intellectual and Developmental Disabilities; Agency Information Collection Activities; Proposed Collection; Comment Request; Financial Status Reporting Form for State Councils on Developmental Disabilities AGENCY... hours per Total burden respondents respondent response hours Financial Status Reporting Form for State...

  14. Outcomes of a New Residential Scheme for Adults with Intellectual Disabilities in Taiwan: A 2-Year Follow-Up

    Science.gov (United States)

    Chou, Y-C.; Pu, C.; Kroger, T.; Lee, W.; Chang, S.

    2011-01-01

    Background: The Taiwanese government launched a new programme in November 2004 to support adults with intellectual disabilities living in smaller facilities. This paper aims to evaluate the service outcomes of this new residential scheme over 2 years including those residents who moved from an institution and those who moved from their family.…

  15. Self-Directed Support: Impact of Hiring Practices on Adults with Intellectual and Developmental Disabilities and Families

    Science.gov (United States)

    Heller, Tamar; Arnold, Catherine K.; van Heumen, Lieke; McBride, Elizabeth L.; Factor, Alan

    2012-01-01

    The study examined the differential experiences and outcomes for people with intellectual and developmental disabilities and their families receiving self-directed services based on the type of personal support worker hired (parents, siblings, other relatives, friends, and agency staff). The sample consisted of 372 participants in a self-directed…

  16. Reliability and Validity of a Physical Capacity Evaluation Used to Assess Individuals with Intellectual Disabilities and Mental Illness

    Science.gov (United States)

    Jang, Yuh; Chang, Tzyh-Chyang; Lin, Keh-Chung

    2009-01-01

    Physical capacity evaluations (PCEs) are important and frequently offered services in work practice. This study investigates the reliability and validity of the National Taiwan University Hospital Physical Capacity Evaluation (NTUH PCE) on a sample of 149 participants consisted of three groups: 45 intellectual disability (ID), 56 mental illness…

  17. Perception and Experience of Primary Care Physicians on Pap Smear Screening for Women with Intellectual Disabilities: A Preliminary Finding

    Science.gov (United States)

    Lin, Jin-Ding; Sung, Chang-Lin; Lin, Lan-Ping; Liu, Ta-Wen; Lin, Pei-Ying; Chen, Li-Mei; Chu, Cordia M.; Wu, Jia-Ling

    2010-01-01

    This study aims to establish evidence-based data to explore the perceptions and experience of primary care physicians in the Pap smear screening provision for women with intellectual disabilities (ID), and to analyze the associated factors in the delivery of screening services to women with ID in Taiwan. Data obtained by a cross-sectional survey…

  18. An Ecological Approach to Seeking and Utilising the Views of Young People with Intellectual Disabilities in Transition Planning

    Science.gov (United States)

    Small, Neil; Raghavan, Raghu; Pawson, Nicole

    2013-01-01

    Transition planning using a person-centred approach has, in the main, failed to shape service provision. We offer an alternative based on an ecological understanding of human development linked to public health approaches that prioritise whole system planning. A total of 43 young people with intellectual disabilities, in Bradford, England, who…

  19. Paid Support Workers for Adults with Intellectual Disabilities; Their Current Knowledge of Hearing Loss and Future Training Needs

    Science.gov (United States)

    McShea, Lynzee; Fulton, John; Hayes, Catherine

    2016-01-01

    Background: People with intellectual disabilities are more likely to have hearing loss than the general population. For those unable to self-advocate, the responsibility of detection and management falls to their caregivers. Methods: This is the first cycle of a project using action research methodology to improve services. Twenty care workers…

  20. Cutting-Edge: Integrating Students with Intellectual and Developmental Disabilities into a 4-Year Liberal Arts College

    Science.gov (United States)

    Hafner, Dedra; Moffatt, Courtney; Kisa, Nutullah

    2011-01-01

    Cutting-Edge provides inclusion in college for students with intellectual disabilities (SWID). Cutting-Edge students attended college by taking undergraduate courses, resided in student housing, and engaged in student-life events as well as pursued community service, internships and employment. Undergraduate students were the best means to teach…

  1. A Framework for Healthcare Provision to Children with Intellectual Disability

    Directory of Open Access Journals (Sweden)

    Anish TS

    2013-02-01

    Full Text Available Purpose: The Kudumbashree mission, an initiative of the Government of Kerala state in India, has collaborated with Local Self Governments to set up ‘Buds’, a special school system for individuals with intellectual disability. The objectives of this study were to evaluate the structure and functioning of ‘Buds’ schools, to identify the healthcare needs of the students, and to conceptualise a framework for healthcare provision. Methods: A cross-sectional survey was conducted among 202 children at 11 registered ‘Buds’ schools in Kerala. A multidisciplinary team consisting of a psychiatrist, public health personnel and a social worker from the Medical Colleges of Kerala, visited the institutions. Data collection consisted of abstraction from medical records, interviews with parents, and clinical assessment and prescription of intervention by the specialists concerned. A pre-tested semi-structured questionnaire was used for every child. Using both quantitative and qualitative techniques, the public health personnel in the team evaluated the structure and functioning of the schools. Results: The most commonly associated condition was epilepsy, seen in 11.9% of the children, while 28.2% had behavioural problems. The medicines needed were mainly anti-epileptics and drugs for behavioural problems. Interventions for self help and social skill training were also among the important requirements. The infrastructure and other facilities were poor in many schools, with the average student to teacher ratio at 14:1. While these institutions were well utilised, functioning was good only in 27.2% of the schools. Healthcare services and visits by healthcare personnel were far from adequate.  This study proposes a framework in which the Medical Colleges and Health Services can function together to deliver healthcare services to children at these schools, with linkages from the District Mental Health Programme (DMHP. Conclusion and Recommendation

  2. The Arab Community in Israel Coping with Intellectual and Developmental Disability

    Directory of Open Access Journals (Sweden)

    Isack Kandel

    2004-01-01

    Full Text Available The Arab family in Israel is still embedded in the traditional society with extended family support systems, but we see a population in transition influenced by the surrounding society. This paper looks at the different religious attitudes toward the exceptional people in our society (i.e., the family reaction to a child born with intellectual or developmental disability, reviews recent studies on the Arab and Bedouin families in Israel, and presents data on the Arab population in residential care centers.Today, out of 57 residential care centers in Israel for persons with intellectual disability, 13 (22.8% are providing service to the non-Jewish population. The Arab population constitutes 12–13% of the total residential care population, lower than the 19–20% in the total population. In residential care, the Arab population is characterized by younger children with severe and profound intellectual disability. The informal family support system is still a very important factor in the Arab family in Israel, a fact that we believe should be strengthened by implementing the British and Danish model of nurse home visitation.

  3. The implications of having attention-deficit/hyperactivity disorder in male adolescents with intellectual disability.

    Science.gov (United States)

    Carmeli, Eli; Klein, Neomy; Sohn, Mordechai

    2007-01-01

    Attention-deficit/hyperactivity disorder (ADHD) is currently defined as a cognitive/behavioral developmental disorder where all clinical criteria are behavioral. The purpose of this study was to demonstrate a correlation between social skills and ADHD among adolescents with intellectual disabilities (ID). The study concerns the specific cognitive and adaptive skills of adolescents dually diagnosed with mild intellectual disabilities and comorbid pathology as ADHD. Three age-and IQ-match groups (males, n = 12 in each group) were investigated. Group I--composed of adolescent diagnosed with mild ID, group II--adolescents diagnosed with ADHD, and group III--adolescents diagnosed with ID and ADHD. The instruments used in the study were Wechsler Intelligence Scale for Children (WISC, according to the chronological age of the subjects) and the short version of the Developmental Behavior Checklist (DBC). Results confirm that comorbidity is a factor differentiating. ADHD strongly increased the impairment of social skills, while behavioral disorders were less damaging in ID performance. The WISC and DBC instruments should be used with confidence in clinical and service settings, to allow a better assessment of co-occurrence morbidity in adolescents with ID. The interactions between intellectual disability and psychopathology behavior highlight the need to plan a more accurate diagnosis and appropriate rehabilitative intervention program, essential for improving the quality of life of the ID population.

  4. An exploration of the experience, confidence and attitudes of staff to the provision of palliative care to people with intellectual disabilities.

    LENUS (Irish Health Repository)

    Ryan, Karen

    2010-09-01

    Research suggests that shortcomings exist in the provision of palliative care to people with intellectual disabilities. This mixed-methods study aimed to describe the experience, confidence and attitudes of staff to the provision of palliative care to people with intellectual disabilities. The sample was drawn from the population of one Health Service Executive area in Ireland. Staff from intellectual disability and palliative care services completed surveys and participated in focus group discussions. Three hundred and eighty-nine questionnaires were distributed and 16 focus groups were held. Fifty-nine per cent of palliative care staff and 67% of intellectual disability services staff had cared for someone with intellectual disability who had died but level of experience was low. Both palliative care and intellectual disability services staff lacked confidence in their ability to provide palliative care. Staff were challenged by perceived \\'differences\\' and \\'difficulties\\' in the provision of care. They endorsed a partnership approach to care but focus group discussions revealed that a shared desire to cooperate was insufficient to guarantee effective collaboration.

  5. Monitoring the prevalence of severe intellectual disability in children across Europe

    DEFF Research Database (Denmark)

    van Bakel, Marit; Einarsson, Ingolfur; Arnaud, Catherine

    2014-01-01

    Our aim was to study the feasibility of creating a framework for monitoring and undertaking collaborative research on intellectual disability at the European level, based on existing databases of children with such disability.......Our aim was to study the feasibility of creating a framework for monitoring and undertaking collaborative research on intellectual disability at the European level, based on existing databases of children with such disability....

  6. High diagnostic yield of syndromic intellectual disability by targeted next-generation sequencing.

    Science.gov (United States)

    Martínez, Francisco; Caro-Llopis, Alfonso; Roselló, Mónica; Oltra, Silvestre; Mayo, Sonia; Monfort, Sandra; Orellana, Carmen

    2017-02-01

    Intellectual disability is a very complex condition where more than 600 genes have been reported. Due to this extraordinary heterogeneity, a large proportion of patients remain without a specific diagnosis and genetic counselling. The need for new methodological strategies in order to detect a greater number of mutations in multiple genes is therefore crucial. In this work, we screened a large panel of 1256 genes (646 pathogenic, 610 candidate) by next-generation sequencing to determine the molecular aetiology of syndromic intellectual disability. A total of 92 patients, negative for previous genetic analyses, were studied together with their parents. Clinically relevant variants were validated by conventional sequencing. A definitive diagnosis was achieved in 29 families by testing the 646 known pathogenic genes. Mutations were found in 25 different genes, where only the genes KMT2D, KMT2A and MED13L were found mutated in more than one patient. A preponderance of de novo mutations was noted even among the X linked conditions. Additionally, seven de novo probably pathogenic mutations were found in the candidate genes AGO1, JARID2, SIN3B, FBXO11, MAP3K7, HDAC2 and SMARCC2. Altogether, this means a diagnostic yield of 39% of the cases (95% CI 30% to 49%). The developed panel proved to be efficient and suitable for the genetic diagnosis of syndromic intellectual disability in a clinical setting. Next-generation sequencing has the potential for high-throughput identification of genetic variations, although the challenges of an adequate clinical interpretation of these variants and the knowledge on further unknown genes causing intellectual disability remain to be solved. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

  7. The prevalence of low self-esteem in an intellectually disabled forensic population.

    Science.gov (United States)

    Johnson, P

    2012-03-01

    This was a quantitative study to measure the prevalence low self-esteem in an intellectually disabled forensic population. The dependent variables used were the adapted six-item Rosenberg Self-Esteem Scale and the adapted Evaluative Beliefs Scale. It had a repeated measures design with independent variables including consideration of differences between the low and medium secure parts of the service, the influences of types of offences and the effects of disrupted childhood attachments. Forty-four male clients, with mild to borderline intellectual disabilities, were recruited. Data were collected by one key researcher during individual research interviews using the two structured instruments to measure self-esteem. Further data were then obtained from routinely recorded clinical information held on the hospital computer system. Unexpectedly, the majority of clients scored as having moderate or high self-esteem on both self-esteem measures. There was a statistically significant positive correlation between the two scales. In all, 64% of the population studied had committed either sexual offences or fire setting offences. Contrary to expectation, those who had evidence of disrupted attachments had slightly higher self-esteem than those who had not experienced disrupted attachments. Self-esteem is a complex personal concept with many influencing factors. Cognitive behaviour therapy has a unique role in realising and overcoming negative core beliefs and feelings of low self-worth. The offence types concurred with previously noted patterns of offending within the intellectually disabled forensic population. © 2011 The Author. Journal of Intellectual Disability Research © 2011 Blackwell Publishing Ltd.

  8. A mixed methods study to develop and pilot a competency assessment tool to support midwifery care of women with intellectual disabilities.

    Science.gov (United States)

    Beake, Sarah; Clark, Louise L; Turner, Toni; Bick, Debra

    2013-08-01

    Recent reports have highlighted the poor quality of health care received by people with intellectual disabilities (otherwise known as 'learning disabilities') in the United Kingdom (UK). UK Confidential Enquiries into maternal deaths have highlighted adverse pregnancy outcomes for women with intellectual disabilities and need for timely and appropriate clinical care. To develop and test a competency assessment tool to support midwifery care of women with intellectual disabilities. A mixed methods study. Large inner city maternity unit. Midwives and key experts in intellectual disabilities, maternity policy and midwifery education. Phase one comprised a systematic narrative review of the literature. Evidence identified informed phase two which included focus groups and interviews. Emergent themes informed the development of a competency assessment tool which was piloted in phase three. Phase one: Four primary research papers and two systematic reviews met the review inclusion criteria. Support to develop parenting skills of women with intellectual disabilities was highlighted as was the need to optimise organisation of maternity services. No studies specifically considered midwifery competencies to support women with intellectual disabilities. Phase two: 23 midwives attended three focus groups and individual interviews were conducted with national leaders in intellectual disability (n=6) and midwifery policy and education (n=7). Themes identified included need for individualised care provided by a known midwife, the importance of effective communication skills and need for clear knowledge and understanding of the legislative framework relevant to intellectual disability. Phase three: A convenience sample of 60 midwives was asked to participate in a pilot study to test the tool, 46 (77%) of whom responded. Thirty midwives (65%) felt competent in their ability to recognise intellectual disability and 37 (80%) competent or expert in understanding women have the right

  9. Complexities in the Provision of Respite Care to Family Carers of Persons with Intellectual Disabilities

    Directory of Open Access Journals (Sweden)

    Frieda Finlay

    2011-10-01

    Full Text Available PurposeRespite care is generally thought to benefit family carers of persons with intellectual disabilities and is regarded as an important component of family-centred services.  However, the complexities associated with the provision of such services, from the carer’s perspective, have been rarely investigated.MethodThis qualitative research study was carried out through a participatory action research process that involved collaboration among researchers and family members as co-researchers.  Seven focus groups, involving seventy family carers (fifty mothers, fifteen fathers and five sisters, were held in seven locations across the Republic of Ireland. ResultsThree main themes dominated the discussions.  The first theme related to the ambivalence of carers towards using respite services, as expressed in their reluctance to relinquish care-giving for even a short period; the feelings of guilt they experienced; and the greater needs of other carers.  The second theme related to the benefits of respite breaks, but these were solely with respect to the carer and other family members, rather than to the person with an intellectual disability.  The third theme regarding the quality of provision was dominated by concerns for the care the person received in using the services. ConclusionsRespite care has the potential to make a difference, and these findings call for building much- needed alliances between all members of the family and professionals.  This is in order to support one another through the difficulties associated with the redesign of existing respite provision, and the extension of these services to the growing number of carers who require respite breaks.doi 10.5463/DCID.v22i2.22Key wordsIntellectual disability, respite, family members, Ireland 

  10. Discrimination and other barriers to accessing health care: perspectives of patients with mild and moderate intellectual disability and their carers.

    Directory of Open Access Journals (Sweden)

    Afia Ali

    Full Text Available People with intellectual disability have a higher prevalence of physical health problems but often experience disparities in accessing health care. In England, a number of legislative changes, policies and recommendations have been introduced to improve health care access for this population. The aim of this qualitative study was to examine the extent to which patients with intellectual disability and their carers experience discrimination or other barriers in accessing health services, and whether health care experiences have improved over the last decade years.Twenty nine participants (14 patient and carer dyads, and one carer took part in semi-structured interviews. The interviews were audio-taped and transcribed and analysed using thematic analysis. Eight themes were identified. Half the participants thought that the patient had been treated unfairly or had been discriminated against by health services. There were accounts of negative staff attitudes and behaviour, and failure of services to make reasonable adjustments. Other barriers included problems with communication, and accessing services because of lack of knowledge of local services and service eligibility issues; lack of support and involvement of carers; and language problems in participants from minority ethnic groups. Most participants were able to report at least one example of good practice in health care provision. Suggestions for improving services are presented.Despite some improvements to services as a result of health policies and recommendations, more progress is required to ensure that health services make reasonable adjustments to reduce both direct and indirect discrimination of people with intellectual disability.

  11. Developing a questionnaire on physical activity support of people with (profound) intellectual (and multiple) disabilities : Experiences from the Netherlands

    NARCIS (Netherlands)

    Bossink, Leontien; van der Putten, Annette; Vlaskamp, Carla

    2017-01-01

    Introduction: People with intellectual disabilities (ID) undertake extremely low levels of physical activity, which is even more true in people with profound intellectual and multiple disabilities (PIMD). Physical activity approaches, particularly for people with PIMD, are more likely to be

  12. Perspectives of Employees with Intellectual Disabilities on Themes Relevant to Their Job Satisfaction. An Explorative Study using Photovoice

    NARCIS (Netherlands)

    Akkerman, A.; Janssen, C.G.C.; Kef, S.; Meininger, H.P.

    2014-01-01

    Background: This study explored the perspectives of people with intellectual disabilities on themes relevant to their job satisfaction in integrated and sheltered employment. Method: The photovoice method was used. Nine participants with moderate to mild intellectual disabilities, working in

  13. The Development of Research Skills in Young Adults with Intellectual Disability in Participatory Research

    Science.gov (United States)

    Morgan, Michelle F.; Moni, Karen B.; Cuskelly, Monica

    2015-01-01

    There is limited information about specific research constructs developed by adults with intellectual disability in undertaking research despite increasing involvement in research "with" rather than "on" these individuals. Participatory research was used with three young adults with intellectual disability to collaboratively…

  14. Enabling Access and Enhancing Comprehension of Video Content for Postsecondary Students with Intellectual Disability

    Science.gov (United States)

    Evmenova, Anya S.; Behrmann, Michael M.

    2014-01-01

    There is a great need for new innovative tools to integrate individuals with intellectual disability into educational experiences. This multiple baseline study examined the effects of various adaptations for improving factual and inferential comprehension of non-fiction videos by six postsecondary students with intellectual disability. Video…

  15. Thematic Analysis of the Effectiveness of an Inpatient Mindfulness Group for Adults with Intellectual Disabilities

    Science.gov (United States)

    Yildiran, Hatice; Holt, Rachel R.

    2015-01-01

    The study focused on the effectiveness of group mindfulness for people with intellectual disabilities in an assessment and treatment unit. Six participants with mild or moderate intellectual disabilities were interviewed using semi-structured interviews. The interviews focused on identifying the benefits and difficulties of using mindfulness. The…

  16. Examining Rater Effects of the TGMD-2 on Children with Intellectual Disability

    Science.gov (United States)

    Kim, Youngdeok; Park, Ilhyeok; Kang, Minsoo

    2012-01-01

    The purpose of this study was to investigate rater effects on the TGMD-2 when it applied to children with intellectual disability. A total of 22 children with intellectual disabilities participated in this study. Children's performances in each of 12 subtests of the TGMD-2 were recorded via video and scored by three adapted physical activity…

  17. Carer Knowledge and Perceptions of Healthy Lifestyles for Adults with Intellectual Disabilities

    Science.gov (United States)

    Melville, Craig A.; Hamilton, Sarah; Miller, Susan; Boyle, Susan; Robinson, Nicola; Pert, Carol; Hankey, Catherine R.

    2009-01-01

    Background: Carers can have a significant impact supporting people with intellectual disabilities to make healthy lifestyle choices. This study examines carers' training needs on diet and physical activity. Methods: A cross-sectional survey was undertaken of the knowledge and perceptions of carers supporting adults with intellectual disabilities.…

  18. Self Stigma in People with Intellectual Disabilities and Courtesy Stigma in Family Carers: A Systematic Review

    Science.gov (United States)

    Ali, Afia; Hassiotis, Angela; Strydom, Andre; King, Michael

    2012-01-01

    People with intellectual disability are one of the most stigmatised groups in society. Despite this, research in this area has been limited. This paper provides a review of studies examining self stigma in people with intellectual disability, and courtesy and affiliate stigma in family carers. An electronic search of studies published between 1990…

  19. Understanding Sources of Knowledge for Coaches of Athletes with Intellectual Disabilities

    Science.gov (United States)

    MacDonald, Dany J.; Beck, Katie; Erickson, Karl; Côté, Jean

    2016-01-01

    Background: Recent research has investigated development of coaching knowledge; however, less research has investigated the development of coaches who coach athletes with intellectual disabilities. The purpose of this study was to understand how coaches of athletes with intellectual disabilities gain their knowledge. Method: Forty-five Special…

  20. Mortality among a Cohort of Persons with an Intellectual Disability in New South Wales, Australia

    Science.gov (United States)

    Florio, Tony; Trollor, Julian

    2015-01-01

    Objectives: The main objective of the study was to compare mortality for people with an intellectual disability (ID) to the general population in New South Wales (NSW), Australia. A second objective was to provide mortality data for people with an intellectual disability from NSW in a standardized format, which allows for international comparisons…

  1. End-of-life decisions for people with intellectual disabilities, an interview study with patient representatives

    NARCIS (Netherlands)

    Wagemans, A.M.; Schrojenstein Lantman-de Valk, H.M. van; Proot, I.M.; Metsemakers, J.; Tuffrey-Wijne, I.; Curfs, L.M.G.

    2013-01-01

    Background: Not much is known about the process of end-of-life decision-making for people with intellectual disabilities. Aim: To clarify the process of end-of-life decision-making for people with intellectual disabilities from the perspective of patient representatives. Design: A qualitative study

  2. Exogenous Melatonin for Sleep Problems in Individuals with Intellectual Disability: A Meta-Analysis

    Science.gov (United States)

    Braam, Wiebe; Smits, Marcel G.; Didden, Robert; Korzilius, Hubert; van Geijlswijk, Ingeborg M.; Curfs, Leopold M. G.

    2009-01-01

    Recent meta-analyses on melatonin has raised doubts as to whether melatonin is effective in treating sleep problems in people without intellectual disabilities. This is in contrast to results of several trials on melatonin in treating sleep problems in individuals with intellectual disabilities. To investigate the efficacy of melatonin in treating…

  3. Measuring Physical Activity with Pedometers in Older Adults with Intellectual Disability : Reactivity and Number of Days

    NARCIS (Netherlands)

    Hilgenkamp, Thessa; Van Wijck, Ruud; Evenhuis, Heleen

    The minimum number of days of pedometer monitoring needed to estimate valid average weekly step counts and reactivity was investigated for older adults with intellectual disability. Participants (N = 268) with borderline to severe intellectual disability ages 50 years and older were instructed to

  4. Early Detection of Dementia in People with an Intellectual Disability--A German Pilot Study

    Science.gov (United States)

    Kuske, Bettina; Wolff, Christian; Gövert, Uwe; Müller, Sandra Verena

    2017-01-01

    Background: This study investigated the application of a newly developed neuropsychological assessment, the Wolfenbütteler Dementia Test for Individuals with Intellectual Disabilities (WDTIM) in combination with the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID). Methods: The instruments were evaluated in…

  5. Augmented Reality for Teaching Science Vocabulary to Postsecondary Education Students with Intellectual Disabilities and Autism

    Science.gov (United States)

    McMahon, Don D.; Cihak, David F.; Wright, Rachel E.; Bell, Sherry Mee

    2016-01-01

    The purpose of this study was to examine the use of an emerging technology called augmented reality to teach science vocabulary words to college students with intellectual disability and autism spectrum disorders. One student with autism and three students with an intellectual disability participated in a multiple probe across behaviors (i.e.,…

  6. Physical Activity Benefits and Needs in Adults with Intellectual Disabilities: Systematic Review of the Literature

    Science.gov (United States)

    Bartlo, Pamela; Klein, Penelope J.

    2011-01-01

    Regular physical activity is vital for adult individuals with intellectual disabilities. The purpose of this review was to assess critically the evidence on effectiveness of physical activity interventions for adults with intellectual disability. An electronic database search was conducted. Research was then assessed for methodological rigor, and…

  7. Communication problems in children with autism and intellectual disability : depicting the phenotype

    NARCIS (Netherlands)

    Maljaars, Janne Pieternella Wilhelmina

    2012-01-01

    Children with autism and intellectual disability form a particularly vulnerable group, as both disorders have a significant impact on the way and level of information processing and communication. However, children with autism and co-occurring intellectual disability are often excluded from

  8. Concept Acquisition in Children with Mild Intellectual Disability: Factors Affecting the Abstraction of Prototypical Information.

    Science.gov (United States)

    Hayes, Brett K.; Conway, Robert N.

    2000-01-01

    A study investigated effects of variations in the number of instances comprising a category on concept acquisition by 31 children (ages 9-14) with mild intellectual disability and 19 controls. Intellectual disability had little effect on ability to abstract a category prototype but did reduce use of exemplar-specific information for recognition.…

  9. Attributional and Emotional Determinants of Aggression in People with Mild Intellectual Disabilities.

    Science.gov (United States)

    Baker, Warren; Bramston, Paul

    1997-01-01

    People (n=103) with mild intellectual disabilities responded to several scales of anger, hostility, aggression, and personality. Results were consistent with earlier studies of relationships among anger, hostility, and aggression conducted with the general population. Findings suggest that people with intellectual disabilities may benefit from…

  10. Child Welfare-Involved Youth with Intellectual Disabilities: Pathways into and Placements in Foster Care

    Science.gov (United States)

    Slayter, Elspeth; Springer, Cheryl

    2011-01-01

    Existing literature suggests that youth with intellectual disabilities are at increased risk for child maltreatment. Little is known about youth with intellectual disabilities who are supervised by child welfare authorities or living in foster care. Reasons for child welfare system involvement and placement types are explored. In this…

  11. Changes in Domain Specific Self-Perception amongst Young People with Intellectual Disability: A Longitudinal Study

    Science.gov (United States)

    O'Byrne, Clara; Muldoon, Orla T.

    2018-01-01

    This study examines the changes that occur in multidimensional self-concept of adolescents with a diagnosis of intellectual disabilities, across gender and category of intellectual disability (borderline, mild, moderate) groups. A sample of 54 young people completed the Harter Self-Perception Profile. Using a three-wave longitudinal study…

  12. Agreement in Quality of Life Assessment between Adolescents with Intellectual Disability and Their Parents

    Science.gov (United States)

    Golubovic, Spela; Skrbic, Renata

    2013-01-01

    Intellectual disability affects different aspects of functioning and quality of life, as well as the ability to independently assess the quality of life itself. The paper examines the agreement in the quality of life assessments made by adolescents with intellectual disability and their parents compared with assessments made by adolescents without…

  13. Practitioners Who Work with Parents with Intellectual Disability: Stress, Coping and Training Needs

    Science.gov (United States)

    Clayton, Olivia; Chester, Andrea; Mildon, Robyn; Matthews, Jan

    2008-01-01

    Background: Challenges for practitioners who work with parents with intellectual disability arise from several sources. The purpose of the current study was to identify the stressors experienced by practitioners who work with parents with intellectual disability in Australia, investigate coping strategies and explore training needs so as to inform…

  14. Family Members' Reports of the Technology Use of Family Members with Intellectual and Developmental Disabilities

    Science.gov (United States)

    Palmer, S. B.; Wehmeyer, M. L.; Davies, D. K.; Stock, S. E.

    2012-01-01

    Background: A nationwide survey of family members of people with intellectual and developmental disabilities ranging in age from birth through adulthood was conducted to replicate a similar effort by Wehmeyer and update the knowledge base concerning technology use by people with intellectual and developmental disabilities. Method: Survey responses…

  15. Prevalence of Falls and Risk Factors in Adults with Intellectual Disability

    Science.gov (United States)

    Hsieh, Kelly; Rimmer, James; Heller, Tamar

    2012-01-01

    The purpose of this study was to examine the prevalence of falls and risk factors for falls in 1,515 adults (greater than or equal to 18 years) with intellectual disability using baseline data from the Longitudinal Health and Intellectual Disability Study. Nearly 25% of adults from the study were reported to have had one or more falls in the past…

  16. Mainstream Students' Attitudes to Possible Inclusion in Unified Sports with Students Who Have an Intellectual Disability

    Science.gov (United States)

    Townsend, Michael; Hassall, John

    2007-01-01

    Background: Schools in New Zealand do not normally include students with intellectual disability in their sports programmes. This study examined regular students' attitudes towards the possible inclusion of students with an intellectual disability in an integrated sports programme within their school. Materials and Methods: A total of 170 school…

  17. Parental Explanatory Models of Child's Intellectual Disability: A Q Methodology Study

    Science.gov (United States)

    John, Aesha; Montgomery, Diane

    2016-01-01

    This study with families caring for an individual with an intellectual disability in a mid-sized Indian city explored the diverse explanatory models that parents constructed of causes, preferred treatment approaches and perceived social effects of their child's intellectual disability. Seventeen mothers and three fathers rank ordered 48 disability…

  18. Barriers to Increasing the Physical Activity of People with Intellectual Disabilities

    Science.gov (United States)

    Cartwright, Luke; Reid, Marie; Hammersley, Richard; Walley, Robert M.

    2017-01-01

    Background: The prevalence of obesity, inactivity and related morbidity and mortality is higher amongst people with intellectual disabilities than in the population in general, an issue of global concern. This research examined the perspectives of people with intellectual disabilities and their carers, on exercise and activity. Materials and…

  19. Social Interaction with Adults with Severe Intellectual Disability: Having Fun and Hanging Out

    Science.gov (United States)

    Johnson, Hilary; Douglas, Jacinta; Bigby, Christine; Iacono, Teresa

    2012-01-01

    Background: Social interaction is integral to social inclusion. Little is known about the nature of social interaction between adults with severe intellectual disability and those with whom they engage. Method: Participants were six adults with intellectual disability and people identified as those with whom they shared demonstrable pleasurable…

  20. Physical Activity Levels among Adolescent and Young Adult Women and Men with and without Intellectual Disability

    Science.gov (United States)

    Sundahl, Lina; Zetterberg, Marie; Wester, Anita; Rehn, Börje; Blomqvist, Sven

    2016-01-01

    Background: As physical activity can prevent overweight and promote general health, the aim was to investigate the amount of physical activity among adolescent and young adult women and men with intellectual disability (ID), compared to age-matched control groups without intellectual disability. A further aim was to examine whether physical…

  1. How Do People with Intellectual Disability Describe the Experience of Falling in Love?

    Science.gov (United States)

    Mattila, Jenni; Uusiautti, Satu; Määttä, Kaarina

    2017-01-01

    The phenomenon of falling in love among people with intellectual disability has not received much attention in research. In this study, seven Finnish young adults (5 women and 2 men) with mild intellectual disability (ID) were asked about their experiences of falling in love. They were interviewed with a qualitative themed interview method. The…

  2. Mortality of People with Intellectual Disabilities in England: A Comparison of Data from Existing Sources

    Science.gov (United States)

    Heslop, Pauline; Glover, Gyles

    2015-01-01

    Background: At present, there is limited statistical information about mortality of people with intellectual disabilities in England. This study explores the data that are currently available. Materials and Methods: Four recent sources of data about mortality of people with intellectual disabilities in England are reviewed: the Confidential…

  3. Making Work Fit Care: Reconciliation Strategies Used by Working Mothers of Adults with Intellectual Disabilities

    Science.gov (United States)

    Chou, Yueh-Ching; Fu, Li-yeh; Chang, Heng-Hao

    2013-01-01

    Background: This study explored the experiences of working mothers with an adult child with intellectual disabilities to understand how they reconcile paid work and care responsibilities. Methods: Fifteen working mothers in Taiwan with an adult child with intellectual disabilities were interviewed, and an interpretative phenomenological approach…

  4. Older and Younger Family Caregivers of Adults with Intellectual Disability: Factors Associated with Future Plans

    Science.gov (United States)

    Chou, Yueh-Ching; Lee, Yue-Chune; Lin, Li-Chan; Kroger, Teppo; Chang, Ai-Ning

    2009-01-01

    A structured interview survey was conducted in a major city in Taiwan to explore and compare older and younger family primary caregivers' well being and their future caregiving plans for these adults with intellectual disability. The sample size was 315 caregivers who were 55 years or older and who cared for adults with intellectual disability and…

  5. Characteristics of People with Intellectual Disabilities in a Secure U.S. Forensic Hospital

    Science.gov (United States)

    Stinson, Jill Diane; Robbins, Sharon Bradford

    2014-01-01

    Prior research examining persons with intellectual disabilities who have committed criminal offenses has focused primarily on correctional populations, or those who reside in secure forensic settings in the United Kingdom and Australia. This study describes 235 persons with intellectual, developmental, and cognitive disabilities who reside in a…

  6. Evaluation of a Social Network Intervention for People with Mild to Borderline Intellectual Disabilities

    Science.gov (United States)

    van Asselt-Goverts, A. E.; Embregts, P. J. C. M.; Hendriks, A. H. C.

    2018-01-01

    Background: Little is known about the effectiveness of interventions aimed at enhancing the social networks of people with intellectual disabilities. This study explores the results of such an intervention. How did the clients with mild to borderline intellectual disabilities and their support workers evaluate the intervention? What did they learn…

  7. Cognitive-Behavioral Therapy for Depression in Individuals with Intellectual Disabilities: A Review

    Science.gov (United States)

    James, Jessica S.

    2017-01-01

    Depression is common in individuals with intellectual disabilities, but evidence regarding treatment for this population is lacking. Through a systematic literature review of cognitive-behavioral therapy (CBT) with individuals with intellectual disabilities, a total of six studies were identified that used pretest-post-test nonequivalent control…

  8. Evaluation of a social network intervention for people with mild to borderline intellectual disabilities

    NARCIS (Netherlands)

    van Asselt-Goverts, A.E.; Embregts, P.J.C.M; Hendriks, A.H.C.

    2018-01-01

    Background: Little is known about the effectiveness of interventions aimed at enhancing the social networks of people with intellectual disabilities. This study explores the results of such an intervention. How did the clients with mild to borderline intellectual disabilities and their support

  9. Young children's attitudes toward peers with intellectual disabilities: effect of the type of school.

    Science.gov (United States)

    Georgiadi, Maria; Kalyva, Efrosini; Kourkoutas, Elias; Tsakiris, Vlastaris

    2012-11-01

    This study explored typically developing children's attitudes towards peers with intellectual disabilities, with special reference to the type of school they attended. Two hundred and fifty-six Greek children aged 9-10 (135 in inclusive settings) completed a questionnaire and an adjective list by Gash (European Journal of Special Needs Education 1993; 8, 106) and drew a child with intellectual disabilities, commenting also on their drawings. Typically developing children expressed overall neutral attitudes towards peers with intellectual disabilities. Type of school differentiated their attitudes, with children from inclusive settings being more positive towards peers with intellectual disabilities and choosing less negative adjectives to describe them than children from non-inclusive settings. Girls and students who expressed more positive social, emotional and overall attitudes towards students with intellectual disabilities chose more positive adjectives to describe a child with intellectual disabilities. It was also found that children from inclusive settings drew children with intellectual disabilities as more similar to a child with Down syndrome in comparison with children from non-inclusive settings. Effective inclusive practices should be promoted to foster social acceptance of students with intellectual disabilities. © 2012 Blackwell Publishing Ltd.

  10. Mutations in HIVEP2 are associated with developmental delay, intellectual disability, and dysmorphic features

    NARCIS (Netherlands)

    Steinfeld, Hallie; Cho, Megan T.; Retterer, Kyle; Person, Rick; Schaefer, G. Bradley; Danylchuk, Noelle; Malik, Saleem; Wechsler, Stephanie Burns; Wheeler, Patricia G.; van Gassen, Koen L I; Terhal, P. A.; Verhoeven, Virginie J M; van Slegtenhorst, Marjon A.; Monaghan, Kristin G.; Henderson, Lindsay B.; Chung, Wendy K.

    Human immunodeficiency virus type I enhancer binding protein 2 (HIVEP2) has been previously associated with intellectual disability and developmental delay in three patients. Here, we describe six patients with developmental delay, intellectual disability, and dysmorphic features with de novo likely

  11. Medical Students' Attitudes towards Health Care for People with Intellectual Disabilities: A Qualitative Study

    Science.gov (United States)

    Ryan, Travis A.; Scior, Katrina

    2016-01-01

    Background: People with intellectual disabilities experience serious health inequalities (e.g. they die younger than people without intellectual disabilities). Medical students' attitudes towards health care for this population warrant empirical attention because, as tomorrow's doctors, they will affect the health inequalities that people with…

  12. Effectiveness of Mobile Skill Teaching Software for Parents of Individuals with Intellectual Disability

    Science.gov (United States)

    Cankaya, Serkan; Kuzu, Abdullah

    2018-01-01

    Mobile skill teaching software has been developed for the parents of the children with intellectual disability to be used in teaching daily life skills. The purpose of this research is to investigate the effectiveness of the mobile skill teaching software developed for the use of the parents of the children with intellectual disability. In…

  13. Research Ethics and the Use of Visual Images in Research with People with Intellectual Disability

    Science.gov (United States)

    Boxall, Kathy; Ralph, Sue

    2009-01-01

    The aim of this paper is to encourage debate about the use of creative visual approaches in intellectual disability research and discussion about Internet publication of photographs. Image-based research with people with intellectual disability is explored within the contexts of tighter ethical regulation of social research, increased interest in…

  14. Masculinity Theory in Applied Research with Men and Boys with Intellectual Disability

    Science.gov (United States)

    Wilson, Nathan John; Shuttleworth, Russell; Stancliffe, Roger; Parmenter, Trevor

    2012-01-01

    Researchers in intellectual disability have had limited theoretical engagement with mainstream theories of masculinity. In this article, the authors consider what mainstream theories of masculinity may offer to applied research on, and hence to therapeutic interventions with, men and boys with intellectual disability. An example from one research…

  15. Serum Uric Acid, Hyperuricemia and Body Mass Index in Children and Adolescents with Intellectual Disabilities

    Science.gov (United States)

    Lin, Jin-Ding; Lin, Pei-Ying; Lin, Lan-Ping; Hsu, Shang-Wei; Yen, Chia-Feng; Fang, Wen-Hui; Wu, Sheng-Ru; Chien, Wu-Chien; Loh, Ching-Hui; Chu, Cordia M.

    2009-01-01

    The aims of the preset study were to describe the profile of serum uric acid, the prevalence of hyperuricemia and its risk factors among children and adolescents with intellectual disabilities. We conducted a cross-sectional study of 941 children and adolescents with intellectual disabilities (aged 4-18 years) who participated in annual health…

  16. Attention-Deficit/Hyperactivity Disorder among Children with and without Intellectual Disability: An Examination across Time

    Science.gov (United States)

    Neece, C. L.; Baker, B. L.; Blacher, J.; Crnic, K. A.

    2011-01-01

    Background: Children with intellectual and developmental disabilities are at heightened risk for mental disorders, and disruptive behaviour disorders appear to be the most prevalent. The current study is a longitudinal examination of attention-deficit/hyperactivity disorder (ADHD) among children with and without intellectual disability (ID) across…

  17. Promoting Health of People with Intellectual Disabilities: Views of Professionals Working in Group Homes

    Science.gov (United States)

    Wahlström, Lina; Bergström, Helena; Marttila, Anneli

    2014-01-01

    Deinstitutionalisation has influenced the life situation for people with intellectual disabilities, whilst the experiences of health promotion in group homes now are limited. This study aimed to explore aspects important to consider when promoting health amongst persons with intellectual disabilities in group homes, from the perspective of…

  18. Staffs' Knowledge and Perceptions of Working with Women with Intellectual Disabilities and Mental Health Problems

    Science.gov (United States)

    Taggart, L.; McMillan, R.; Lawson, A.

    2010-01-01

    Aim: There is a growing evidence of the physical and mental health inequalities in people with intellectual disability (ID) although less has been written concerning the mental health of women with ID (International Association for the Scientific Study of Intellectual Disabilities). This is compared with the substantive literature published within…

  19. Groups for Parents with Intellectual Disabilities: A Qualitative Analysis of Experiences

    Science.gov (United States)

    Gustavsson, Marie; Starke, Mikaela

    2017-01-01

    Background: Parents with intellectual disabilities (IDs) are often socially isolated and need support. Materials and Methods: This qualitative study is based on participant observations of a group for parents with with intellectual disabilities. Data were categorized and interpreted in the framework of social capital and symbolic interactionism.…

  20. Effects of Mindfulness-Based Intervention to Improve Task Performance for Children with Intellectual Disabilities

    Science.gov (United States)

    Kim, Jeongil; Kwon, Miyoung

    2018-01-01

    Background: Task performance is a critical factor for learning in individuals with intellectual disabilities. This study aimed to examine mindfulness-based intervention (MBI) to improve task performance for children with intellectual disability (ID). Methods: Three elementary school children with ID participated in the study. A multiple baseline…

  1. A Comparison of Two Methods for Recruiting Children with an Intellectual Disability

    Science.gov (United States)

    Adams, Dawn; Handley, Louise; Heald, Mary; Simkiss, Doug; Jones, Alison; Walls, Emily; Oliver, Chris

    2017-01-01

    Background: Recruitment is a widely cited barrier of representative intellectual disability research, yet it is rarely studied. This study aims to document the rates of recruiting children with intellectual disabilities using two methods and discuss the impact of such methods on sample characteristics. Methods: Questionnaire completion rates are…

  2. The Impact of Intellectual Disability, Caregiver Burden, Family Functioning, Marital Quality, and Sense of Coherence

    Science.gov (United States)

    Al-Krenawi, Alean; Graham, John R.; Al Gharaibeh, Fakir

    2011-01-01

    The present article is the first to consider the impact of intellectual disability on Bedouin-Arab families' caregiver burden, family functioning, marital quality, and sense of coherence. A random sample of 300 Bedouin-Arab parents with one or more intellectually disabled children, and a control group (n = 100) completed the McMaster Family…

  3. Sources of Stress among Parents of Children with Intellectual Disabilities: A Preliminary Investigation in Saudi Arabia

    Science.gov (United States)

    Aldosari, Mubarak S.; Pufpaff, Lisa A.

    2014-01-01

    This study identified differences in sources of stress between parents of male children with intellectual disabilities in Saudi Arabia. Seventeen pairs of parents completed the Parent Stress Index (Abidin, 1995). Each pair of parents had a male child diagnosed with intellectual disability who either attended an institute for male children with…

  4. Impact of Physical Activity on Obesity and Lipid Profile of Adults with Intellectual Disability

    Science.gov (United States)

    Gawlik, Krystyna; Zwierzchowska, Anna; Celebanska, Diana

    2018-01-01

    Introduction: This study assessed overweight, obesity and lipid profiles in adults with intellectual disability and compared these metrics with their physical activity. Materials and Method: Basic somatic parameters, lipid profile and weekly physical activity were examined in 27 adults with moderate intellectual disability. Chi-square independence…

  5. Love and Resistance of Mothers with Intellectual Disability from Ethnocultural Communities in Canada

    Science.gov (United States)

    Pacheco, Laura; McConnell, David

    2017-01-01

    Background: Mothers with intellectual disability are thought to be passive, dependent and in need of protection. This study contributes to a nascent body of research that challenges this schema, revealing how women with intellectual disability who are mothers resist oppression. Methods: Narrative research methods underpinned by intersectionality…

  6. Training of Child and Adolescent Psychiatry Fellows in Autism and Intellectual Disability

    Science.gov (United States)

    Marrus, Natasha; Veenstra-VanderWeele, Jeremy; Hellings, Jessica A.; Stigler, Kimberly A.; Szymanski, Ludwik; King, Bryan H.; Carlisle, L. Lee; Cook, Edwin H., Jr.; Pruett, John R., Jr.

    2014-01-01

    Patients with autism spectrum disorders and intellectual disability can be clinically complex and often have limited access to psychiatric care. Because little is known about post-graduate clinical education in autism spectrum disorder and intellectual disability, we surveyed training directors of child and adolescent psychiatry fellowship…

  7. Comparative Policy Brief: Status of Intellectual Disabilities in the Republic of Haiti

    Science.gov (United States)

    Jacobson, Erik

    2008-01-01

    An estimated 800,000 persons have disabilities in Haiti, but there are no data that refer specifically to those with intellectual disabilities. Traditional fears and stigma about disability are widespread. While the constitution supports the idea that people with disabilities should have autonomy and education, there are no laws to mandate…

  8. Test Anxiety Research: Students with Vision Impairments and Students with Mild Intellectual Disabilities

    Science.gov (United States)

    Datta, Poulomee

    2014-01-01

    There is an absence of research on test anxiety in students with disabilities although such testing is taken for granted among students without disabilities. This study investigated the test anxiety of the students in each of the two disability groups, those with vision impairments and those with intellectual disabilities who are placed in…

  9. Intellectual disability rights and inclusive citizenship in South Africa: What can a scoping review tell us?

    Science.gov (United States)

    2018-01-01

    Background Intellectual disability (ID) is the most prevalent disability in the world. People with intellectual disability (PWID) frequently experience extreme violations of numerous human rights. Despite greater prevalence in South Africa than in high-income countries, most ID research currently comes from the Global North. This leaves us with few contextually sensitive studies to draw from to advance inclusive citizenship. Objectives Our scoping review aims to investigate pertinent ID rights issues in South Africa, synthesise quantitative and qualitative studies, and provide a synopsis of available evidence on which to base future work. We aim to clarify key concepts, address gaps in the literature and identify opportunities for further research. Method We followed strict eligibility criteria. Medical subject heading terms were entered into seven databases. Seven reviewers worked independently, two per paper. Quantitative and qualitative data extraction forms were designed. We followed Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines and registered a protocol. An inductive approach enabled a thematic analysis of selected studies. Results By following PRISMA guidelines, 82 studies were assessed for eligibility of which 59 were included. Ten sub-themes were integrated into four main themes: the right not to be discriminated against, the right to psychological and bodily integrity, the right to accommodating services and challenges to rights implementation. Conclusion People with intellectual disability face compound difficulties when trying to assert their constitutionally entitled rights. This ongoing project requires serious commitment and action. Statutory obligations to nurture every South African’s human rights naturally extend to PWID and their supporters who forge ahead in a disabling environment. PMID:29850438

  10. Academic self-regulation in students with mild intellectual disability

    Directory of Open Access Journals (Sweden)

    Đurić-Zdravković Aleksandra

    2012-01-01

    Full Text Available The aim of this research is to determine the types of academic self-regulation in students with mild intellectual disability and their relation with the examinees' age. The sample consists of 120 examinees of both genders. The selection criteria were: IQ characteristic of mild intellectual disability (51 to 69, age between 12 and 15.11, 5th to 8th grade of primary school, and absence of neurological, psychiatric, expressed emotional and multiple disorders. Academic Self-Regulation Questionnaire was used in this research. The results show the dominance of identified academic regulation in students from the sample. However, by weighting variables, the sample manifested a controlled type according to the unique motivation continuum. It was determined that intrinsic motivation of twelve-year-olds is higher than intrinsic motivation of students in other age groups. Also, we can conclude that statistically significant difference was determined in the level of self-regulation among the examinees of different ages. This means that the behavior of twelve-year-olds is more self-regulated than that of fifteen-year-old students.

  11. Credibility assessment of testimonies provided by victims with intellectual disabilities

    Directory of Open Access Journals (Sweden)

    Antonio L. MANZANERO

    2017-09-01

    Full Text Available One of the main obstacles in the way of access to justice for the victims with intellectual disability comes from the stereotypes referred to their ability to produce a statement at police legal procedures, with the consequence that some consider their statements less reliable than the rest of the victims, and others considerate their statements more reliable given their inability to create complex lies. This article reviews three of the most recent studies done by the UCM group of Psychology of Testimony, with the objective of analyzing the role of experience and intuition in the evaluation of credibility in people with intellectual disability (ID, and also it aims to prove whether the credibility analysis procedures such as Reality Monitoring (RM and Statement Validity Assessment (SVA would be valid procedures to discriminate between real and false statements within these collectives. From the results of these studies, it can be deducted that experience may not seem to be enough in order to discriminate between real and simulated victims, but analyzing the characteristics of the statements as the only indicator doesn’t seem to be enough either. As an alternative, the general procedure HELPT is proposed for the evaluation of credibility of people with ID.

  12. Modifying the 'Positive Parenting Program' for parents with intellectual disabilities.

    Science.gov (United States)

    Glazemakers, I; Deboutte, D

    2013-07-01

    Many parents with intellectual disabilities (ID) want and/or need professional guidance and support to learn skills and strategies to prevent and manage child behaviour problems. However, the available support is rarely suitable, and suitable support is rarely available. The aim of this study was to determine whether a popular mainstream parenting training programme, known as 'Group Triple P' (Positive Parenting Program), could be successfully modified for this parent group. A pilot study was undertaken to determine whether a modified version of Group Triple P would engage and retain parents with ID. A non-experimental, pre-test post-test study, involving a total of 30 parents with ID, was then undertaken to obtain preliminary efficacy data. Parent engagement and participation levels were high. No parent 'dropped out' of the programme. After completing the modified Group Triple P programme, parents reported a decrease in psychological distress, maladaptive parenting and child conduct problems. Parents reported high levels of satisfaction with the information and support they received. Research-informed adaptation of mainstream behavioural family interventions, such as Group Triple P, could make 'suitable support' more readily available, and more engaging for parents with ID. © 2012 The Authors. Journal of Intellectual Disability Research © 2012 John Wiley & Sons Ltd, MENCAP & IASSID.

  13. Health promotion in families who have children with intellectual and developmental disabilities

    Directory of Open Access Journals (Sweden)

    Emira Švraka

    2011-04-01

    Full Text Available Intellectual disability is the state of stopped or incomplete mental development which is featured by the impairment of abilities occurring at the development age and contributes to general level of intelligence, such as speech, cognitive, motor and social abilities. Disability can occur together or separately from other mental or physical disorders. 290 million people worldwide are estimated to have disabilities. Health is a core element in quality of life, but poverty, marginalization, limited access to primary health care, and lack of health promotion knowledge compromise health. Based on a research results in all nine areas of the family life quality (health, nancial status, family relations, support of other, support of services, influence of values, career, leisure and recreation, and community interaction community could influence with the permanent preventive measures on 6 concepts of family life quality: importance, possibility, initiative, achievement, stability and satisfaction. The research could be of great help for the development of comprehensive strategies for improvement of quality of life for families that have one or more members with intellectual disability. From inclusion we expect approach to individual and his/her family by the society, to take into account all their diversities, preservation and improvement of their personal physical and mental health, for optimal possible functioning, at all personal and social levels.

  14. The Association between Education and Mortality for Adults with Intellectual Disability.

    Science.gov (United States)

    Landes, Scott D

    2017-03-01

    Although the relationship between education and mortality is well documented in the general population, it has not been examined for adults with intellectual disability. Informed by fundamental cause theory, I explore the association between education and mortality in a sample of 4,241 adults with intellectual disability from the 1986-2009 National Health Interview Survey with Linked Mortality Files through 2011. Cox regression models were utilized to analyze the predictive effect of education on mortality risk while taking into account birth cohort differences. Increased education was associated with lower mortality risk for adults with intellectual disability, and this relationship strengthened in later birth cohorts who had greater access to the public education system. Comparison with a sample of 21,205 adults without intellectual disability demonstrates that the association between education and mortality risk was not as robust for adults with intellectual disability and highlights the ongoing socioeconomic challenges faced by this population.

  15. Intellectual disability, mental illness and offending behaviour: forensic cases from early twentieth-century Ireland.

    Science.gov (United States)

    Kelly, B D

    2010-09-01

    The history of institutional care for individuals with intellectual disability is under-researched, complex and troubling. To explore the experiences of women who may have had intellectual disability and/or mental illness and were admitted to forensic psychiatric care in early twentieth-century Ireland. All female case records at the Central Mental Hospital, Dublin from 1910 to 1948 (n = 42) were studied for evidence of possible intellectual disability and a series of five cases is presented in detail. These committals occurred in the context of adverse social conditions, over-crowding in asylums and a belief that rates of mental illness were rising. Particular challenges included diagnostic issues (especially in relation to intellectual disability), adjustment to asylum environments, mental illness and physical ill-health. The institutional experiences of individuals with intellectual disability represents an important area for further historical research, using larger and more varied forensic populations.

  16. Eye movement desensitization and reprocessing in an adolescent with epilepsy and mild intellectual disability.

    Science.gov (United States)

    Rodenburg, Roos; Benjamin, Anja; Meijer, Anne Marie; Jongeneel, Ruud

    2009-09-01

    Intellectual disability is a comorbid condition in epilepsy. People with epilepsy and intellectual disability are at high risk of developing behavioral problems. Among the many contributors to behavioral problems in people with epilepsy and intellectual disability are those of traumatic experiences. As such, behavioral problems can be seen as a reflection of these traumatic experiences. Among established trauma therapies, eye movement desensitization and reprocessing (EMDR) is an emerging treatment that is effective in adults and also seems to be effective in children. This article is a case report of EMDR in an adolescent with epilepsy and mild intellectual disability, in whom the EMDR children's protocol was used. The aim was to assess whether clinical trauma status significantly diminished to nonclinical status posttreatment. Change in trauma symptoms was evaluated with the Reliable Change Index (RCI). Results showed a significant decrease in trauma symptoms toward nonclinical status from pretreatment to posttreatment. EMDR consequences for epilepsy and intellectual disability are discussed.

  17. Perspectives on family caregiving of people aging with intellectual disability affected by dementia: Commentary from the International Summit on Intellectual Disability and Dementia.

    Science.gov (United States)

    Jokinen, Nancy; Gomiero, Tiziano; Watchman, Karen; Janicki, Matthew P; Hogan, Mary; Larsen, Frode; Beránková, Anna; Heloísa Santos, Flávia; Service, Kathy; Crowe, Jim

    2018-01-01

    This article, an output of the 2016 International Summit on Intellectual Disability and Dementia, examines familial caregiving situations within the context of a support-staging model for adults with intellectual disability (ID) affected by dementia. Seven narratives offer context to this support-staging model to interpret situations experienced by caregivers. The multidimensional model has two fundamental aspects: identifying the role and nature of caregiving as either primary (direct) or secondary (supportive); and defining how caregiving is influenced by stage of dementia. We propose staging can affect caregiving via different expressions: (1) the "diagnostic phase," (2) the "explorative phase," (3) the "adaptive phase," and (4) the "closure phase." The international narratives illustrate direct and indirect caregiving with commonality being extent of caregiver involvement and attention to the needs of an adult with ID. We conclude that the model is the first to empirically formalize the variability of caregiving within families of people with ID that is distinct from other caregiving groups, and that many of these caregivers have idiosyncratic needs. A support-staging model that recognizes the changing roles and demands of carers of people with ID and dementia can be useful in constructing research, defining family-based support services, and setting public policy.

  18. Contribution of Leisure Satisfaction, Acceptance Disability, and Social Relationship to Life Satisfaction among Korean Individuals with Intellectual Disability

    Science.gov (United States)

    Kim, Junhyoung; Schilling, Mary Lou; Kim, May; Han, Areum

    2016-01-01

    There is a dearth of literature that explores the relationships among leisure satisfaction, acceptance of disability, social relationships, and life satisfaction among adults with intellectual disability from Eastern countries. The purpose of this study was to examine how leisure satisfaction, disability acceptance, and social relationships are…

  19. Numerical and spatial cognition of students with physical disabilities and mild intellectual disabilities

    OpenAIRE

    Vidmar, Anja

    2017-01-01

    Mathematics has an important effect on an individual's successfulness and satisfaction in the field of education and life. Numerical and spatial cognition are of crucial importance to successfully master mathematics. If this kind of cognition is poorly developed, it represents one of the most important obstacles to achieving success in the field of mathematics. Students with mild intellectual disabilities are in a worse position already at the starting point of the educational process, as the...

  20. Systemic therapy and the social relational model of disability: enabling practices with people with intellectual disability

    OpenAIRE

    Haydon-Laurelut, Mark

    2009-01-01

    Therapy has been critiqued for personalizing the political (Kitzinger, 1993). The social-relational model (Thomas, 1999) is one theoretical resource for understanding the practices of therapy through a political lens. The social model(s) have viewed therapy with suspicion. This paper highlights – using composite case examples and the authors primary therapeutic modality, systemic therapy – some systemic practices with adults with Intellectual Disability (ID) that enact a position that it is s...