WorldWideScience

Sample records for profound intellectual disabilities

  1. 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

  2. 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

  3. The pros and cons of inclusive education for children with Profound Intellectual and Multiple Disabilities

    NARCIS (Netherlands)

    Everaarts, Sanne; de Boer, Anke; van der Putten, Annette; Minnaert, Alexander

    2016-01-01

    Aim: Although children with disabilities have the right to be included into the school system, children with Profound Intellectual and Multiple Disabilities (PIMD) are often not included. The aim of this study is to gather knowledge about inclusive education for children with PIMD by identifying

  4. Attuning: A Communication Process between People with Severe and Profound Intellectual Disability and Their Interaction Partners.

    Science.gov (United States)

    Griffiths, Colin; Smith, Martine

    2016-03-01

    People with severe and profound intellectual disability typically demonstrate a limited ability to communicate effectively. Most of their communications are non-verbal, often idiosyncratic and ambiguous. This article aims to identify the process that regulates communications of this group of people with others and to describe the methodological approach that was used to achieve this. In this qualitative study, two dyads consisting of a person with severe or profound intellectual and multiple disability and a teacher or carer were filmed as they engaged in school-based activities. Two 1-hour videotapes were transcribed and analysed using grounded theory. Attuning was identified within the theory proposed here as a central process that calibrates and regulates communication. Attuning is conceptualized as a bidirectional, dyadic communication process. Understanding this process may support more effective communication between people with severe or profound intellectual and multiple disability and their interaction partners. © 2015 John Wiley & Sons Ltd.

  5. The Role of Sound in Residential Facilities for People With Profound Intellectual and Multiple Disabilities

    NARCIS (Netherlands)

    van den Bosch, Kirsten A.; Andringa, Tjeerd C.; Baskent, Deniz; Vlaskamp, Carla

    2016-01-01

    Attention to the auditory environment of people with profound intellectual and multiple disabilities (PIMD) is limited, both in research and practice. As there is a dynamic interplay between the quality of the auditory environment and well-being, a study was undertaken to test the validity of the

  6. 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…

  7. Determining alertness in individuals with profound intellectual and multiple disabilities : the reliability of an observation list

    NARCIS (Netherlands)

    Munde, V.S.; Vlaskamp, C.; Ruijssenaars, A.J.J.M.; Nakken, H.

    In the support of individuals with profound intellectual and multiple disabilities (PIMD), assessing the level of alertness is a recurring issue for parents and other direct support persons. Although observations show clear advantages above and beyond other assessment methods, there are problems

  8. Social Peer Interactions in Persons with Profound Intellectual and Multiple Disabilities: A Literature Review

    Science.gov (United States)

    Nijs, Sara; Maes, Bea

    2014-01-01

    Social interactions may positively influence developmental and quality of life outcomes. Research in persons with profound intellectual and multiple disabilities (PIMD) mostly investigated interactions with caregivers. This literature review focuses on peer interactions of persons with PIMD. A computerized literature search of three databases was…

  9. HEART RATE AND PHYSICAL ACTIVITY PATTERNS IN PERSONS WITH PROFOUND INTELLECTUAL AND MULTIPLE DISABILITIES

    NARCIS (Netherlands)

    Waninge, Aly; van der Putten, Annette A. J.; Stewart, Roy E.; Steenbergen, Bert; van Wijck, Ruud; van der Schans, Cees P.

    2013-01-01

    Because physical fitness and health are related to physical activity, it is important to gain an insight into the physical activity levels of persons with profound intellectual and multiple disabilities (PIMD). The purpose of this study was to examine heart rate patterns to measure the activity

  10. Attentional Processes in Interactions between People with Profound Intellectual and Multiple Disabilities and Direct Support Staff

    Science.gov (United States)

    Ine, Hostyn; Heleen, Neerinckx; Bea, Maes

    2011-01-01

    Few studies have examined joint attention in interactions with persons with profound intellectual and multiple disabilities (PIMD), despite its important role in high-quality interaction. The purpose of this study is to describe the attention-directing behaviours of persons with PIMD and their direct support staff and the attention episodes…

  11. Interaction between Persons with Profound Intellectual and Multiple Disabilities and Their Partners: A Literature Review

    Science.gov (United States)

    Hostyn, Ine; Maes, Bea

    2009-01-01

    Background: High quality interactions are of crucial importance for quality of life of persons with profound intellectual and multiple disabilities (PIMD). This literature review describes and synthesises studies addressing the interaction between persons with PIMD and their partners. Method: A computerised literature search using defined…

  12. Attuning: A Communication Process between People with Severe and Profound Intellectual Disability and Their Interaction Partners

    Science.gov (United States)

    Griffiths, Colin; Smith, Martine

    2016-01-01

    Background: People with severe and profound intellectual disability typically demonstrate a limited ability to communicate effectively. Most of their communications are non-verbal, often idiosyncratic and ambiguous. This article aims to identify the process that regulates communications of this group of people with others and to describe the…

  13. Examining relationships between staff attributions of soundscapes and core affect in people with severe or profound intellectual and visual disabilities

    NARCIS (Netherlands)

    van den Bosch, Kirsten A.; Vlaskamp, Carla; Andringa, Tjeerd C.; Post, Wendy J.; Ruijssenaars, Wied A.J.J.M.

    Background: People with profound intellectual disabilities experience a high prevalence of visual disabilities, making them more dependent on sound. However, research addressing the influence of the auditory environment is scarce. Method: Observations of the auditory environments (soundscapes) and

  14. 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…

  15. Informal social networks of people with profound intellectual and multiple disabilities : Relationship with age, communicative abilities and current living arrangements

    NARCIS (Netherlands)

    Kamstra, A.; van der Putten, A.A.J.; Post, W.J.; Vlaskamp, C.

    2015-01-01

    BACKGROUND: People with profound intellectual and multiple disabilities (PIMD) have limited informal social contacts. Research to determine the factors which can positively influence establishing sound informal social contacts is required. MATERIALS AND METHODS: Regression analysis for 200 people

  16. Family matters: The experiences and opinions of family members of persons with (severe) or profound intellectual disabilities

    OpenAIRE

    Luijkx, Jorien

    2016-01-01

    “I love my sister, but sometimes I don’t”. This is one of the statements made in the study focused on the experiences of family members of people with (profound) intellectual (and multiple) disabilities (both of individuals living in a residential facility as persons living at home). In recent years, there has been greater recognition of the important position of parents and siblings of people with (profound) intellectual (and multiple) disabilities and the importance of the wellbeing of all ...

  17. Differentiating characteristics of deafblindness and autism in people with congenital deafblindness and profound intellectual disability.

    Science.gov (United States)

    Hoevenaars-van den Boom, M A A; Antonissen, A C F M; Knoors, H; Vervloed, M P J

    2009-06-01

    In persons with deafblindness, it is hard to distinguish autism spectrum disorders from several deafblind specific behaviours caused by the dual sensory impairments, especially when these persons are also intellectually disabled. As a result, there is an over-diagnosis of autism in persons who are deafblind leading to unsuitable interventions. Autism as specified by the DSM-IV was studied in 10 persons with congenital deafblindness with profound intellectual disabilities. Behaviours of people with deafblindness and autism (n = 5) and of people with deafblindness without autism (n = 5) were observed in a semi-standardised assessment. All people with deafblindness showed impairments in social interaction, communication and language. In contrast to persons without autism, people with deafblindness and autism showed significantly more impairments in reciprocity of social interaction, quality of initiatives to contact and the use of adequate communicative signals and functions. No differences between the groups were found for quantity and persistence of stereotyped behaviour, quality of play and exploration and adequate problem-solving strategies. This study indicates that there are some possibilities to differentiate autism from behaviours specific for deafblindness. It also confirms the large overlap in overt behaviours between people with deafblindness and persons with autism.

  18. Improving Social Skills in Adolescents and Adults with Autism and Severe to Profound Intellectual Disability: A Review of the Literature

    Science.gov (United States)

    Walton, Katherine M.; Ingersoll, Brooke R.

    2013-01-01

    Social skills are important treatment targets for individuals with autism spectrum disorders (ASD) across the lifespan. However, few treatments are available for adolescents and adults with ASD who also have severe to profound intellectual disability (S/PID). Several social skill interventions have been described that may improve social skills in…

  19. Reliability of assessing the sensory perception of children with profound intellectual and multiple disabilities : a case study

    NARCIS (Netherlands)

    Vlaskamp, C.; Cuppen-Fonteine, H.

    Background This study describes preliminary stages of developing a checklist to enable practitioners to determine the behavioural responses of children with profound intellectual and multiple disabilities to sensory stimuli. Reliability of currently used checklists is low, with a focus on the

  20. Motor activation in people with profound intellectual and multiple disabilities: research in daily practice in residential facilities

    NARCIS (Netherlands)

    Bossink, Leontien; van der Putten, Annette; Vlaskamp, Carla

    2014-01-01

    Aim: The total study aims at generating knowledge about the best way to motor activate persons with profound intellectual and multiple disabilities (PIMD) in residential facilities. The purpose of the current poster presentation is to present the results of the first step executed in this project

  1. The documentation of health problems in relation to prescribed medication in people with profound intellectual and multiple disabilities

    NARCIS (Netherlands)

    van der Heide, D. C.; van der Putten, A. A. J.; van den Berg, P. B.; Taxis, K.; Vlaskamp, C.

    Persons with profound intellectual and multiple disabilities (PIMD) suffer from a wide range of health problems and use a wide range of different drugs. This study investigated for frequently used medication whether there was a health problem documented in the medical notes for the drug prescribed.

  2. Informal Social Networks of People with Profound Intellectual and Multiple Disabilities: Relationship with Age, Communicative Abilities and Current Living Arrangements

    Science.gov (United States)

    Kamstra, A.; van der Putten, A. A. J.; Post, W. J.; Vlaskamp, C.

    2015-01-01

    Background: People with profound intellectual and multiple disabilities (PIMD) have limited informal social contacts. Research to determine the factors which can positively influence establishing sound informal social contacts is required. Materials and Methods: Regression analysis for 200 people with PIMD was used to analyse how age,…

  3. Family matters : The experiences and opinions of family members of persons with (severe) or profound intellectual disabilities

    NARCIS (Netherlands)

    Luijkx, Jorien

    2016-01-01

    “I love my sister, but sometimes I don’t”. This is one of the statements made in the study focused on the experiences of family members of people with (profound) intellectual (and multiple) disabilities (both of individuals living in a residential facility as persons living at home). In recent

  4. An Evaluation of Social and Adaptive Skills in Adults with Bipolar Disorder and Severe/Profound Intellectual Disability

    Science.gov (United States)

    Matson, Johnny L.; Terlonge, Cindy; Gonzalez, Melissa L.; Rivet, Tessa

    2006-01-01

    The purpose of this study was to explore the interrelationship of social and adaptive skills in adults with bipolar disorder and severe or profound intellectual disability. A bipolar group (N=14), a severe psychopathology group without bipolar disorder (N=14), and a control group with no DSM-IV Axis I diagnosis (N=14) were compared on the…

  5. The Role of the External Personal Assistants for Children with Profound Intellectual and Multiple Disabilities Working in the Children's Home

    Science.gov (United States)

    Axelsson, Anna Karin

    2015-01-01

    Background: Children with profound intellectual and multiple disabilities need support to function in an optimal way. However, there is a limited knowledge about the role of external personal assistants working in the children's home. Materials and Methods: A mixed method study was performed including qualitative data from interviews with 11…

  6. Catch the wave! Time-window sequential analysis of alertness stimulation in individuals with profound intellectual and multiple disabilities

    NARCIS (Netherlands)

    Munde, V. S.; Vlaskamp, C.; Maes, B.; Ruijssenaars, A. J. J. M.

    BackgroundWhile optimally activities are provided at those moments when the individual with profound intellectual and multiple disabilities (PIMD) is focused on the environment' or alert', detailed information about the impact that the design and timing of the activity has on alertness is lacking.

  7. Quality-Enhancing Interventions for People with Profound Intellectual and Multiple Disabilities: A Review of the Empirical Research Literature

    Science.gov (United States)

    Maes, Bea; Lambrechts, Greet; Hostyn, Ine; Petry, Katja

    2007-01-01

    Background: This study provides an overview of empirical research on the effectiveness of quality-enhancing interventions for people with profound intellectual and multiple disabilities (PIMD). Method: Through computerised searches of the PsycINFO and ERIC databases, and using several search criteria specifically relating to the target group and…

  8. Staff attributions of the causes of challenging behaviour in children and adults with profound intellectual and multiple disabilities

    NARCIS (Netherlands)

    Poppes, P.; van der Putten, A.A.J.; ten Brug, A.; Vlaskamp, C.

    A study has shown that staff do not generally perceive challenging behaviour in people with profound intellectual and multiple disabilities (PIMD) as being of serious consequence. In this study we aimed to gain a better understanding of the causal explanations that direct care and support staff give

  9. What parents find important in the support of a child with profound intellectual and multiple disabilities.

    Science.gov (United States)

    Jansen, S L G; van der Putten, A A J; Vlaskamp, C

    2013-05-01

    The importance of a partnership between parents and professionals in the support of children with disabilities is widely acknowledged and is one of the key elements of 'family-centred care'. To what extent family-centred principles are also applied to the support of persons with profound intellectual and multiple disabilities (PIMD) is not yet known. The purpose of this exploratory study was to examine what parents with a child with PIMD find important in the support of their child. In addition, we examined which child or parent characteristics influence these parental opinions. In total, 100 parents completed an adapted version of the Measure of Processes of Care. Mean unweighted and weighted scale scores were computed. Non-parametric tests were used to examine differences in ratings due to child (gender, age, type and number of additional disabilities, type of services used and duration of service use) and parent characteristics (gender, involvement with support and educational level). Parents rated situations related to 'Respectful and Supportive Care' and 'Enabling and Partnership' with averages of 7.07 and 6.87 respectively on a scale from 1 to 10. They were generally satisfied with the services provided, expressed in a mean score of 6.88 overall. The age of the child significantly affected the scores for 'Providing Specific Information about the Child'. Parents of children in the '6-12 years' age group gave significantly higher scores on this scale than did parents of children in the '≥17 years' age group (U = 288, r = -0.34). This study shows that parents with children with PIMD find family-centred principles in the professional support of their children important. Although the majority of parents are satisfied with the support provided for their children, a substantial minority of the parents indicated that they did not receive the support they find important. © 2012 Blackwell Publishing Ltd.

  10. Attentional processes in interactions between people with profound intellectual and multiple disabilities and direct support staff.

    Science.gov (United States)

    Hostyn, Ine; Ine, Hostyn; Neerinckx, Heleen; Heleen, Neerinckx; Maes, Bea; Bea, Maes

    2011-01-01

    Few studies have examined joint attention in interactions with persons with profound intellectual and multiple disabilities (PIMD), despite its important role in high-quality interaction. The purpose of this study is to describe the attention-directing behaviours of persons with PIMD and their direct support staff and the attention episodes resulting from their interactions, and to understand how these variables relate to each other. Video observations of 17 staff-client dyads were coded using partial interval recording. The results showed considerable variation across individuals and dyads. In general, persons with PIMD directed the attention of staff members infrequently. The staff members frequently directed their clients' attention towards a topic of interest but did not often use the tactile modality. Within the staff-client dyad, there was not much joint attention; however, shared attention episodes occurred frequently. Shared attention and joint attention are strongly correlated. A negative correlation was found between clients not using attention-directing behaviours and staff members using tactile methods to direct the attention, and joint attention episodes. This study presents both directions for future research and practical implications. Copyright © 2010 Elsevier Ltd. All rights reserved.

  11. Time use of parents raising children with severe or profound intellectual and multiple disabilities.

    Science.gov (United States)

    Luijkx, J; van der Putten, A A J; Vlaskamp, C

    2017-07-01

    Raising children with severe or profound intellectual and multiple disabilities (PIMD) is expected to put extreme pressure on parental time use patterns. The aim of this study was to examine the total time use of mothers and fathers raising children with PIMD and compare it with the time use of parents of typically developing children. Twenty-seven fathers and 30 mothers raising children with PIMD completed a time use diary on a mobile phone or tablet app, as did 66 fathers and 109 mothers of typically developing children. Independent t-tests and Mann-Whitney tests were performed to compare mean time use. There are no differences in the time use of parents of children with PIMD on contracted time (paid work and educational activities) and necessary time (personal care, eating and drinking and sleeping) when compared with parents of typically developing children. There are significant differences between the parents of children with PIMD and the parents of typically developing children in terms of committed time (time for domestic work and the care and supervision of their children) and free time. The mothers of children with PIMD spend significantly less time on domestic work and more time on care and supervision than mothers of typically developing children. This study shows that the parents of children with PIMD have to spend a significant amount of time on care tasks and have on average 1.5 h less free time per day than parents of typically developing children. This is a striking difference, because leisure time can substantially contribute to well-being. Therefore, it is important not only to consider a child with PIMD's support needs but also to identify what parents need to continue their children's daily care and supervision. © 2017 John Wiley & Sons Ltd.

  12. Cause-Specific Mortality and Death Certificate Reporting in Adults with Moderate to Profound Intellectual Disability

    Science.gov (United States)

    Tyrer, F.; McGrother, C.

    2009-01-01

    Background: The study of premature deaths in people with intellectual disability (ID) has become the focus of recent policy initiatives in England. This is the first UK population-based study to explore cause-specific mortality in adults with ID compared with the general population. Methods: Cause-specific standardised mortality ratios (SMRs) and…

  13. Incidence and Trends in Psychopathology Symptoms over Time in Adults with Severe to Profound Intellectual Disability

    Science.gov (United States)

    Horovitz, Max; Matson, Johnny L.; Sipes, Megan; Shoemaker, Mary; Belva, Brian; Bamburg, Jay W.

    2011-01-01

    Individuals with intellectual disability (ID) have a high risk for developing comorbid psychopathology. While researchers have shown that symptoms of psychopathology remain relatively stable in children with ID over time, little research has been conducted to demonstrate symptom stability for adults with ID. Incidence of psychopathology symptoms…

  14. Differentiating characteristics of deafblindness and autism in people with congenital deafblindness and profound intellectual disability

    NARCIS (Netherlands)

    Hoevenaars-van den Boom, M.A.A.; Antonissen, A.C.F.M.; Knoors, H.E.T.; Vervloed, M.P.J.

    2009-01-01

    In persons with deafblindness, it is hard to distinguish autism spectrum disorders from several deafblind specific behaviours caused by the dual sensory impairments, especially when these persons are also intellectually disabled. As a result, there is an over-diagnosis of autism in persons who are

  15. Undernutrition in children with profound intellectual and multiple disabilities (PIMD): its prevalence and influence on quality of life.

    Science.gov (United States)

    Holenweg-Gross, C; Newman, C J; Faouzi, M; Poirot-Hodgkinson, I; Bérard, C; Roulet-Perez, E

    2014-07-01

    To estimate the prevalence of undernutrition among children with profound intellectual and multiple disabilities (PIMD) and to explore its influence on quality of life. Seventy-two children with PIMD (47 male; 25 female; age range 2 to 15 years 4 months; mean age 8.6, SD 3.6) underwent an anthropometric assessment, including body weight, triceps skinfold thickness, segmental measures and recumbent length. Undernutrition was determined using tricipital skinfold percentile and z-scores of weight-for-height and height-for-age. The quality of life of each child was evaluated using the QUALIN questionnaire adapted for profoundly disabled children. Twenty-five children (34.7%) were undernourished and seven (9.7%) were obese. Among undernourished children only eight (32 %) were receiving food supplements and two (8%) had a gastrostomy, of which one was still on a refeeding programme. On multivariate analysis, undernutrition was one of the independent predictors of lower quality of life. Undernutrition remains a matter of concern in children with PIMD. There is a need to better train professionals in systematically assessing the nutritional status of profoundly disabled children in order to start nutritional management when necessary. © 2013 John Wiley & Sons Ltd.

  16. Supporting End of Life Decision Making: Case Studies of Relational Closeness in Supported Decision Making for People with Severe or Profound Intellectual Disability

    Science.gov (United States)

    Watson, Joanne; Wilson, Erin; Hagiliassis, Nick

    2017-01-01

    Background: The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) promotes the use of supported decision making in lieu of substitute decision making. To date, there has been a lack of focus on supported decision making for people with severe or profound intellectual disability, including for end of life decisions.…

  17. Efforts to increase social contact in persons with profound intellectual and multiple disabilities: Analysing individual support plans in the Netherlands.

    Science.gov (United States)

    Kamstra, Aafke; van der Putten, Annette Aj; Vlaskamp, Carla

    2017-06-01

    Most people with profound intellectual and multiple disabilities (PIMD) have limited social contact and it is unclear what is done to maintain or increase these contacts. Individual support planning (ISP) can be used in the systematic enhancement of social contacts. This study analyses the content of ISPs with respect to the social contacts of people with PIMD. ISPs for 60 persons with PIMD in the Netherlands were inductively coded and illustrated with quotations. It turned out that every ISP contained information about social contacts. Of all the quotations extracted, 71.2% were about current conditions, 6.2% were about the future and less than 1% concerned actual goals. The social contacts of people with PIMD are mentioned in their ISPs, but this is rarely translated into goals. The results of the current study suggest that attention should be paid to ensuring that professionals understand the importance of social contacts and their application in practice.

  18. Making a difference? A comparison between multi-sensory and regular storytelling for persons with profound intellectual and multiple disabilities.

    Science.gov (United States)

    Ten Brug, A; Van der Putten, A A J; Penne, A; Maes, B; Vlaskamp, C

    2016-11-01

    Multi-sensory storytelling (MSST) was developed to include persons with profound intellectual and multiple disabilities in storytelling culture. In order to increase the listeners' attention, MSST stories are individualised and use multiple sensory stimuli to support the verbal text. In order to determine the value of MSST, this study compared listeners' attention under two conditions: (1) being read MSST books and (2) being read regular stories. A non-randomised control study was executed in which the intervention group read MSST books (n = 45) and a comparison group (n = 31) read regular books. Books were read 10 times during a 5-week period. The 1st, 5th and 10th storytelling sessions were recorded on video in both groups, and the percentage of attention directed to the book and/or stimuli and to the storyteller was scored by a trained and independent rater. Two repeated measure analyses (with the storytelling condition as a between-subject factor and the three measurements as factor) were performed to determine the difference between the groups in terms of attention directed to the book/stimuli (first analysis) and storyteller (second analysis). A further analysis established whether the level of attention changed between the reading sessions and whether there was an interaction effect between the repetition of the book and the storytelling condition. The attention directed to the book and/or the stimuli was significantly higher in the MSST group than in the comparison group. No significant difference between the two groups was found in the attention directed to the storyteller. For MSST stories, most attention was observed during the fifth reading session, while for regular stories, the fifth session gained least attentiveness from the listener. The persons with profound intellectual and multiple disabilities paid more attention to the book and/or stimuli in the MSST condition compared with the regular story telling group. Being more attentive towards

  19. What Symptoms Predict the Diagnosis of Mania in Persons with Severe/Profound Intellectual Disability In Clinical Practice?

    Science.gov (United States)

    Matson, J. L.; Gonzalez, M. L.; Terlonge, C.; Thorson, R. T.; Laud, R. B.

    2007-01-01

    Background: While researchers have attempted to address the difficulties of diagnosing affective disorders in the intellectually disabled population, diagnosing bipolar disorder in an individual with severe intellectual disability (ID) remains a challenge. The aim of this study was to identify what symptoms can predict a diagnosis of mania in the…

  20. The impact of visual impairment on the ability to perform activities of daily living for persons with severe/profound intellectual disability.

    Science.gov (United States)

    Dijkhuizen, Annemarie; Hilgenkamp, Thessa I M; Krijnen, Wim P; van der Schans, Cees P; Waninge, Aly

    2016-01-01

    The ability to perform activities of daily living (ADL) as a component of participation is one of the factors that contribute to quality of life. The ability to perform ADL for persons experiencing severe/profound intellectual disability (ID) may be reduced due to their cognitive and physical capacities. However, until recently, the impact of the significantly prevalent visual impairments on the performance of activities of daily living has not yet been revealed within this group. The purpose of this prospective cross-sectional study was to investigate the impact of visual impairment on the performance of activities of daily living for persons with a severe/profound intellectual disability. The Barthel Index (BI) and Comfortable Walking Speed (CWS) were used to measure the ability of performing activities of daily living (ADL) in 240 persons with severe/profound ID and having Gross Motor Functioning Classification System (GMFCS) levels I, II or III; this included 120 persons with visual impairment. The impact of visual impairment on ADL was analyzed with linear regression. The results of the study demonstrated that visual impairment slightly affects the ability of performing activities of daily living (BI) for persons experiencing a severe/profound intellectual disability. GMFCS Levels II or III, profound ID level, and visual impairment each have the effect of lowering BI scores. GMFCS Levels II or III, and profound ID level each have the effect of increasing CWS scores, which indicates a lower walking speed. A main effect of visual impairment is present on CWS, but our results do show a substantive interaction effect between GMFCS level III and visual impairment on Comfortable Walking Speed in persons with a severe/profound intellectual disability. Visual impairment has a slight effect on ability to perform ADL in persons experiencing severe/profound ID. Copyright © 2015 Elsevier Ltd. All rights reserved.

  1. Feasibility, Test-Retest Reliability, and Interrater Reliability of the Modified Ashworth Scale and Modified Tardieu Scale in Persons with Profound Intellectual and Multiple Disabilities

    Science.gov (United States)

    Waninge, A.; Rook, R. A.; Dijkhuizen, A.; Gielen, E.; van der Schans, C. P.

    2011-01-01

    Caregivers of persons with profound intellectual and multiple disabilities (PIMD) often describe the quality of the daily movements of these persons in terms of flexibility or stiffness. Objective outcome measures for flexibility and stiffness are muscle tone or level of spasticity. Two instruments used to grade muscle tone and spasticity are the…

  2. Feasibility, test-retest reliability, and interrater reliability of the Modified Ashworth Scale and Modified Tardieu Scale in persons with profound intellectual and multiple disabilities

    NARCIS (Netherlands)

    Waninge, A.; Rook, R.A.; Dijkhuizen, A.; Gielen, E.; van der Schans, C.P.

    2011-01-01

    Caregivers of persons with profound intellectual and multiple disabilities (PIMD) often describe the quality of the daily movements of these persons in terms of flexibility or stiffness. Objective outcome measures for flexibility and stiffness are muscle tone or level of spasticity. Two instruments

  3. The impact of visual impairment on the ability to perform activities of daily living for persons with severe/profound intellectual disability

    NARCIS (Netherlands)

    Dijkhuizen, Annemarie; Hilgenkamp, Thessa I.M.; Krijnen, Wim; van der Schans, Cees; Waninge, Aly

    2015-01-01

    Background The ability to perform activities of daily living (ADL) as a component of participation is one of the factors that contribute to the quality of life. The ability to perform ADL for persons experiencing severe/profound intellectual disability (ID) may be reduced due to their cognitive and

  4. A good read : A study into the use and effects of multi-sensory storytelling; a storytelling method for persons with profound intellectual and multiple disabilities.

    NARCIS (Netherlands)

    ten Brug, Annet

    2015-01-01

    In order to include persons with profound intellectual and multiple disabilities (PIMD) into our storytelling culture, multi-sensory storytelling (MSST) has been developed. In a multi-sensory book, verbal text is supported by sensory stimuli, the form and content of the book are adjusted to the

  5. Relabelling behaviour : The effects of psycho-education on the perceived severity and causes of challenging behaviour in people with profound intellectual and multiple disabilities

    NARCIS (Netherlands)

    Poppes, P.; Putten, van der Annette; Post, W.; Frans, N.; ten Brug, A.; van Es, A.; Vlaskamp, C.

    2016-01-01

    BackgroundPrevalence rates of challenging behaviour are high in children and adults with profound intellectual and multiple disabilities (PIMD). Moreover, many of these behaviours are observed daily. Direct support staff report that most challenging behaviour identified has little impact on the

  6. Relabelling Behaviour. The Effects of Psycho-Education on the Perceived Severity and Causes of Challenging Behaviour in People with Profound Intellectual and Multiple Disabilities

    Science.gov (United States)

    Poppes, P.; van der Putten, A.; Post, W.; Frans, N.; ten Brug, A.; van Es, A.; Vlaskamp, C.

    2016-01-01

    Background: Prevalence rates of challenging behaviour are high in children and adults with profound intellectual and multiple disabilities (PIMD). Moreover, many of these behaviours are observed daily. Direct support staff report that most challenging behaviour identified has little impact on the person with PIMD and attribute challenging…

  7. The impact of visual impairment on the ability to perform activities of daily living for persons with severe/profound intellectual disability

    NARCIS (Netherlands)

    Dijkhuizen, Annemarie; Hilgenkamp, Thessa I. M.; Krijnen, Wim P.; Schans, van der Cees P.; Waninge, Aly

    Background: The ability to perform activities of daily living (ADL) as a component of participation is one of the factors that contribute to quality of life. The ability to perform ADL for persons experiencing severe/profound intellectual disability (ID) may be reduced due to their cognitive and

  8. Efforts in enhancing social contacts of persons with severe of profound intellectual and multiple disabilities : Analysing individual support plans in the Netherlands

    NARCIS (Netherlands)

    Kamstra, Aafke; van der Putten, Annette; Vlaskamp, Carla

    2017-01-01

    Most people with profound intellectual and multiple disabilities (PIMD) have limited social contact and it is unclear what is done to maintain or increase these contacts. Individual support planning (ISP) can be used in the systematic enhancement of social contacts. This study analyses the content

  9. Look closer : The alertness of people with profound intellectual and multiple disabilities during multi-sensory storytelling, a time sequential analysis

    NARCIS (Netherlands)

    Ten Brug, Annet; Munde, Vera S.; van der Putten, Annette A. J.; Vlaskamp, Carla

    2015-01-01

    Introduction: Multi-sensory storytelling (MSST) is a storytelling method designed for individuals with profound intellectual and multiple disabilities (PIMD). It is essential that listeners be alert during MSST, so that they become familiar with their personalised stories. Repetition and the

  10. Look Closer: The Alertness of People with Profound Intellectual and Multiple Disabilities during Multi-Sensory Storytelling, a Time Sequential Analysis

    Science.gov (United States)

    Ten Brug, Annet; Munde, Vera S.; van der Putten, Annette A.J.; Vlaskamp, Carla

    2015-01-01

    Introduction: Multi-sensory storytelling (MSST) is a storytelling method designed for individuals with profound intellectual and multiple disabilities (PIMD). It is essential that listeners be alert during MSST, so that they become familiar with their personalised stories. Repetition and the presentation of stimuli are likely to affect the…

  11. [Inadequacy of the paradigms of special education to subjects with severe and profound grade intellectual disability - the need for pragmatic realism in psychiatry and special pedagogy].

    Science.gov (United States)

    Sipowicz, Kasper; Żuraw, Hanna; Witusik, Andrzej; Mokros, Łukasz; Najbert, Edyta; Pietras, Tadeusz

    2018-05-25

    People with severe and profound grade disabilities are the subject of interest in psychiatry, clinical psychology and special pedagogy. Unfortunately, the paradigmatic approach to special education based on postmodern philosophy is in contrast to the biomedical approach that is based on the positivist and Cartesian models. The paper is an attempt to systematize the similarities and differences between the humanistic approach and the modern biomedical model, which, despite the apparent differences, do not differ so much from each other. Work with a person disabled intellectually in the severe or profound degree is governed by the principles of methodical realism, taking into account to an equal extent the principal deficits, the concomitant diseases, limitations and the social context. The deeper the impairment and disability is, the smaller is the role of the humanistic paradigm in work with the client in the medical management and educational process. Changing the paradigms of special pedagogy has drawn attention to the social context of disability, separating, however, special pedagogy from modern medicine and psychology, cognitive-oriented and psychometry-based. The postmodern paradigm has become an ideology, which makes it difficult to work with deeply disabled people. Only the multidirectional approach including a variety of paradigms makes it possible to provide integrational aid to people with severe and profound grade intellectual disabilities. Working with such a disabled person should take into account equally the biomedical and humanistic aspects. © 2018 MEDPRESS.

  12. Assumptions of Decision-Making Capacity: The Role Supporter Attitudes Play in the Realisation of Article 12 for People with Severe or Profound Intellectual Disability

    Directory of Open Access Journals (Sweden)

    Joanne Watson

    2016-02-01

    Full Text Available The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD was the first legally binding instrument explicitly focused on how human rights apply to people with disability. Amongst their obligations, consistent with the social model of disability, the Convention requires signatory nations to recognise that “…persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life” and mandates signatory nations to develop “…appropriate measures to provide access by persons with disability to the support they may require in exercising their legal capacity”. The Convention promotes supported decision-making as one such measure. Although Australia ratified the UNCRPD in 2008, it retains an interpretative declaration in relation to Article 12 (2, 3, 4, allowing for the use of substituted decision-making in situations where a person is assessed as having no or limited decision-making capacity. Such an outcome is common for people with severe or profound intellectual disability because the assessments they are subjected to are focused on their cognition and generally fail to take into account the interdependent nature of human decision-making. This paper argues that Australia’s interpretative declaration is not in the spirit of the Convention nor the social model of disability on which it is based. It starts from the premise that the intention of Article 12 is to be inclusive of all signatory nations’ citizens, including those with severe or profound cognitive disability. From this premise, arises a practical need to understand how supported decision-making can be used with this group. Drawing from evidence from an empirical study with five people with severe or profound intellectual disability, this paper provides a rare glimpse on what supported decision-making can look like for people with severe or profound intellectual disability. Additionally, it describes the importance of

  13. Therapeutic interventions in the Netherlands and Belgium in support of people with profound intellectual and multiple disabilities

    NARCIS (Netherlands)

    Vlaskamp, Carla; Nakken, Han

    For several reasons, people with profound and multiple disabilities may be offered a variety of therapeutic interventions. Thus far, researchers have shown a limited interest in providing an empirical base for these interventions. Research is needed on the theoretical rationale (if any), the

  14. The tell-tale: what do heart rate; skin temperature and skin conductance reveal about emotions of people with severe and profound intellectual disabilities?

    Science.gov (United States)

    Vos, Pieter; De Cock, Paul; Munde, Vera; Petry, Katja; Van Den Noortgate, Wim; Maes, Bea

    2012-01-01

    Identifying emotions in people with severe and profound intellectual disabilities is a difficult challenge. Since self-reports are not available, behaviour is the most used source of information. Given the limitations and caveats associated with using behaviour as the sole source of information about their emotions, it is important to supplement behavioural information with information from another source. As it is accepted that emotions consist of language, behaviour and physiology, in this article we investigated if physiology could give information about the emotions of people with severe and profound intellectual disabilities. To this aim we tested hypotheses derived from the motivational model of Bradley, Codispoti, Cuthbert, and Lang (2001) about the relation between heart rate and the valence of emotions and between heart rate, skin conductance and skin temperature and behavioural expressions of emotions of people with severe and profound intellectual disability. We presented 27 participants with 4 staff-selected negative and 4 staff-selected positive stimuli. The situations were videotaped and their heart rate, skin conductance and skin temperature was measured. Each behaviour of the participant was coded using the observational method developed by Petry and Maes (2006). As hypothesized, we found a lower heart rate when participants were presented with negative stimuli than when they were presented with positive stimuli in the first 6s of stimuli presentation. Their skin temperature was higher for the expression of low intensity negative emotions compared to the expression of low intensity positive emotions. The results suggest that, as with people without disability, heart rate and skin temperature can give information about the emotions of persons with severe and profound ID. Copyright © 2012 Elsevier Ltd. All rights reserved.

  15. Specific needs of families of young adults with profound intellectual disability during and after transition to adulthood: What are we missing?

    Science.gov (United States)

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

    2017-07-01

    At the age of 21, the trajectory of services offered to youth with profound intellectual disability (ID) change significantly since access to specialised services is more limited. Despite the desire of parents to avoid any impact on their child, several factors can influence the course of this transition. However, there is little research on facilitators and obstacles to the transition to adulthood, and impacts on people with a profound ID. It is therefore difficult to provide solutions that meet their specific needs. The study aimed to document the needs of parents and young adults with profound ID during and after the transition to adulthood by exploring their transitioning experience and factors that influenced it. Using a descriptive qualitative design, two individual semi-structured interviews were conducted with fourteen (14) parents of young adults aged between 18 and 26 with a profound ID. At this point, many material, informative, cognitive and emotional needs of young adults and their parents are not met. Obstacles, mainly organisational, persist and result in a particularly difficult transition to adulthood experience. By knowing the specific needs of these families, it is possible to develop and implement solutions tailored to their reality. WHAT THE PAPERS ADDS?: The transition to adulthood is a critical period for families with young adults with an intellectual disability (ID), a reality observed internationally. Current literature on all levels of ID suggests some barriers to transition that lead to negative impacts on both parents and young adults with ID. However, presently, very little research exists on the reality of families of young adults with profound ID and factors influencing transition to adult life. Most of studies target people with mild to moderate ID. Considering the significant disabilities of people with profound ID, it is possible to imagine that their experience of transition will be even more difficult and they will present

  16. Christianity, sport and disability: a case study of the role of long-distance running in the life of a father and his son who is congenitally blind and has profound intellectual disabilities

    OpenAIRE

    Watson, Nick J.; Parker, Andrew

    2012-01-01

    The aim of this qualitative case study was to explore the role of sport (longdistance running) in the lives of a father and his son who is congenitally blind and has profound intellectual disabilities. Drawing on the works of Jean Vanier, Stanley Hauerwas, Henri Nouwen and John Hull, the major themes explored are relational and religious trust, suffering, sacrificial love, embodiment and blindness. A series of one-to-one semi-structured interviews were conducted with the father (and mother) c...

  17. Learn and apply: using multi-sensory storytelling to gather knowledge about preferences and abilities of children with profound intellectual and multiple disabilities--three case studies.

    Science.gov (United States)

    Brug, Annet Ten; Van der Putten, Annette A J; Vlaskamp, Carla

    2013-12-01

    Knowledge about the preferences and abilities of children with profound intellectual and multiple disabilities (PIMDs) is crucial for providing appropriate activities. Multi-sensory storytelling (MSST) can be an ideal activity for gathering such knowledge about children with PIMDs. The aim of this study was to analyse whether using MSST did lead to changes in teachers' knowledge about preferences and abilities and whether this knowledge was then applied in practice. Three dyads of children with PIMDs and their teachers read an MSST book 20 times during a 10-week period. A questionnaire designed to identify the teachers' current knowledge was filled in before the 1st and again after the 10th and 20th reading sessions. Also, the teachers were asked for their opinion about their newly gathered knowledge. In all three cases, changes in the teachers' knowledge were observed. However, teachers are insufficiently aware of their new knowledge and do not apply it in practice.

  18. Strategies that facilitate participation in family activities of children and adolescents with profound intellectual and multiple disabilities: parents' and personal assistants' experiences.

    Science.gov (United States)

    Axelsson, Anna Karin; Imms, Christine; Wilder, Jenny

    2014-01-01

    Participation throughout one's life plays a significant role for development and emotional well-being. For this reason, there is a need to identify ways to facilitate participation in family activities for children and adolescents with profound intellectual and multiple disabilities (PIMD). The study design was qualitative and explorative, based on semi structured interviews with 11 parents and 9 personal assistants of children with PIMD. The interviews revealed participation-facilitating strategies relating to the children's/adolescent's proximal environment, such as "Availability and acceptability of the activity", "Good knowledge about the child" and a "A positive attitude of people close to the child", as well as strategies related to the children/adolescents themselves: "Sense of belonging", "Possible for the child/adolescent to understand", "Opportunities to influence" and "Feeling of being needed". Children and adolescents with PIMD are dependent on support obtained through their environment. The identified strategies, individually adapted through awareness and knowledge by the parents and the personal assistants, provide important evidence to assist our understanding in gaining understanding about how to improve participation in family activities of children and adolescents with PIMD. Participation-facilitating strategies related to the child/adolescent and his or her proximal environments are identified to improve participation in children and adolescents with profound intellectual and multiple disabilities (PIMD). Examples of strategies for the child's/adolescents' proximal environment include "good knowledge about the child/adolescent", and, for the child/adolescent, include creating "sense of belonging" and "opportunities to influence". Identifying and making these strategies explicit may assist in enhancing the participation of children and adolescents with PIMD in family activities. People in the child's/adolescent's proximal environment need to set

  19. Evaluating the Quality of the Interaction between Persons with Profound Intellectual and Multiple Disabilities and Direct Support Staff: A Preliminary Application of Three Observation Scales from Parent-Infant Research

    Science.gov (United States)

    Hostyn, Ine; Petry, Katja; Lambrechts, Greet; Maes, Bea

    2011-01-01

    Background: Affective and reciprocal interactions with others are essential for persons with profound intellectual and multiple disabilities (PIMD), but it is a challenge to assess their quality. This study aimed to investigate the usefulness of instruments from parent-infant research to evaluate these interactions. Method: Eighteen videotaped…

  20. Examination of the communication interface between students with severe to profound and multiple intellectual disability and educational staff during structured teaching sessions.

    Science.gov (United States)

    Bunning, K; Smith, C; Kennedy, P; Greenham, C

    2013-01-01

    Individuals with severe to profound and multiple intellectual disability (S-PMID) tend to function at the earlier stages of communication development. Variable and highly individual means of communicating may present challenges to the adults providing support in everyday life. The current study aimed to examine the communication interface between students with S-PMID and educational staff. An in-depth, observational study of dyadic interaction in a class within the secondary part of a special school was conducted. The designated educational level was Key Stage 3 under the National Curriculum of England, which is typically for children from age 11 to 14 years attending a state school. There were four student-teacher dyads in the class. The students had multiple impairments with severely limited communication skills. Video capture of dyadic interaction was conducted during five English lessons and sampled to 2.5 min per dyad per lesson. The video footage was transcribed into standard orthography, detailing the vocal and non-vocal aspects. A coding framework guided by the principles of structural-functional linguistics was used to determine the nature of dyadic interaction, comprising linguistic moves, functions and communicative modalities. The relative contributions of student and teacher to the interaction were examined. Significant differences were found between the students and educational staff on the majority of the measures. The teachers dominated the interaction, occupying significantly more turns than the students. Teacher turns contained significantly more initiations and follow-up moves than the students, who used more response moves. Teacher communication mainly served the functions of requesting and information giving. Feedback and scripted functions were also significantly greater among teacher turns, with only limited occurrence among the students. Self- or shared-expression was greatest among the students. The modalities of speech, touch, singing and

  1. A randomised controlled trial on evaluation of the clinical efficacy of massage therapy in a multisensory environment for residents with severe and profound intellectual disabilities: a pilot study.

    Science.gov (United States)

    Chan, J S L; Chien, W T

    2017-06-01

    Recent literature has suggested that relaxation activities can reduce the challenging behaviours of people with intellectual disabilities, particularly in severe and profound grades, due to the counteractive effect of muscle relaxation on emotional frustration or psychological distress. Despite having inconclusive evidence, multisensory environment (MSE) and massage therapy (MT) are the commonly used approaches to relaxation among these people. However, these two approaches have not yet practised or tested in combination for reducing these people's challenging behaviours. A preliminary clinical efficacy trial was conducted to evaluate the effects of MT, MSE and their combined use for residents with intellectual disabilities in a long-term care facility on reducing their challenging behaviours. Eligible residents were recruited and randomly assigned to one of the four study groups (n = 11-12 per group), that is, MT in MSE, MSE alone, MT alone or usual care, for a 10-week intervention after a 1-month washout period. Outcome measures, including the Behaviour Problem Inventory, pulse and respiration rates, Behaviour Checklist and Alertness Observation Checklist, were assessed at recruitment and immediately following the interventions. A total of 42 participants (17 men and 25 women) completed the study. There were no significant differences in frequency and severity of challenging behaviours and most of the outcome measures between the four groups at post-test. Nevertheless, there were statistical significant differences on the active and inactive state (Alertness Observation Checklist) between the three treatment and control groups. Many participants in the three treatment groups changed from an active to inactive state (i.e. reduced activity levels) throughout the interventions, especially the MT in MSE. Such inactivity might suggest the participants' brief exhaustion followed by a period of alertness during the treatment activities. But their attention span and

  2. Engagement in family activities: a quantitative, comparative study of children with profound intellectual and multiple disabilities and children with typical development.

    Science.gov (United States)

    Axelsson, A K; Granlund, M; Wilder, J

    2013-07-01

    Participation is known to be of great importance for children's development and emotional well-being as well as for their families. In the International Classification of Functioning, Disability and Health - Children and Youth version participation is defined as a person's 'involvement in a life situation'. Engagement is closely related to involvement and can be seen as expressions of involvement or degree of involvement within a situation. This study focuses on children's engagement in family activities; one group of families with a child with profound intellectual and multiple disabilities (PIMD) and one group of families with children with typical development (TD) were compared. A descriptive study using questionnaires. Analyses were mainly performed by using Mann-Whitney U-test and Spearman's rank correlation test. Engagement in family activities differed in the two groups of children. The children with PIMD had a lower level of engagement in most family activities even though the activities that engaged the children to a higher or lesser extent were the same in both groups. Child engagement was found to correlate with family characteristics mostly in the children with TD and in the children with PIMD only negative correlations occurred. In the children with PIMD child engagement correlated with cognition in a high number of listed family activities and the children had a low engagement in routines in spite of these being frequently occurring activities. Level of engagement in family activities in the group of children with PIMD was lower compared with that in the group of children with TD. Families with a child with PIMD spend much time and effort to adapt family living patterns to the child's functioning. © 2013 John Wiley & Sons Ltd.

  3. 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 ...

  4. 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...

  5. 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 ...

  6. 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.

  7. 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 ...

  8. Assumptions of Decision-Making Capacity: The Role Supporter Attitudes Play in the Realisation of Article 12 for People with Severe or Profound Intellectual Disability

    OpenAIRE

    Joanne Watson

    2016-01-01

    The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) was the first legally binding instrument explicitly focused on how human rights apply to people with disability. Amongst their obligations, consistent with the social model of disability, the Convention requires signatory nations to recognise that “…persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life” and mandates signatory nations to develop “…appropriate measures...

  9. 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...

  10. 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.

  11. 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.

  12. 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 ...

  13. 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.

  14. 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.

  15. 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.

  16. Proximal processes of children with profound multiple disabilities

    OpenAIRE

    Wilder, Jenny

    2008-01-01

    In this thesis four empirical studies dealt with children with profound multiple disabilities and their parents with regard to: (a) how parents perceived interaction with their children (b) how observed child/parent interaction was linked to behavior style of the children as perceived by the parents (c) how parents of children with profound multiple disabilities perceived child/parent interaction and behavior style of their children in comparison to parents to children without disabilities ma...

  17. 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

  18. 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.

  19. Human dignity and the profoundly disabled: a theological perspective.

    Science.gov (United States)

    Matthews, Pia

    2011-01-01

    One challenge to the concept of human dignity is that it is a rootless notion invoked simply to mask inequalities that inevitably exist between human beings. This privileging of humans is speciesist and its weak point is the profoundly disabled human being. This article argues that far from being a weak point, the profoundly disabled person is a source of strength and witness to the intrinsic dignity that all human beings have by virtue of being human. The disabled represent the reality of human existence that is both strong and fragile. Although human dignity can be understood philosophically its depth is rooted in Christian theological insights. The profoundly disabled occupy a privileged position and share in a theology of mission since they testify to the interdependence of every human being and human dependence on God to a myopic world that only values strength, autonomy and independence.

  20. 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...

  1. 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.

  2. 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

  3. 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

  4. 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.

  5. 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.

  6. 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.

  7. 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...

  8. 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?

  9. 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 ...

  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. 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.

  12. Does visual impairment lead to additional disability in adults with intellectual disabilities? A cross-sectional study

    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

  13. 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.

  14. 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.

  15. 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.

  16. 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.

  17. 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.

  18. 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…

  19. 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.

  20. A Replication to Increase Happiness Indices among Some People with Profound Multiple Disabilities.

    Science.gov (United States)

    Ivancic, Martin T.; And Others

    1997-01-01

    The happiness indices in a Fun Time activity were systematically increased for three of four people with profound multiple disabilities by providing their preferred stimuli. The fourth showed decreased unhappiness. However, three people with profound disabilities and minimal movement failed to show any indices of happiness or unhappiness.…

  1. Teaching Individuals with Profound Multiple Disabilities to Access Preferred Stimuli with Multiple Microswitches

    Science.gov (United States)

    Tam, Gee May; Phillips, Katrina J.; Mudford, Oliver C.

    2011-01-01

    We replicated and extended previous research on microswitch facilitated choice making by individuals with profound multiple disabilities. Following an assessment of stimulus preferences, we taught 6 adults with profound multiple disabilities to emit 2 different responses to activate highly preferred stimuli. All participants learnt to activate…

  2. 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.

  3. 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.

  4. 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...

  5. Sibling relationships in adults who have siblings with or without intellectual disabilities.

    Science.gov (United States)

    Doody, Mairéad A; Hastings, Richard P; O'Neill, Sarah; Grey, Ian M

    2010-01-01

    There is relatively little research on the relationships between adults with intellectual disability and their siblings, despite the potential importance of these relationships for either individual's psychological well-being and future care roles that might be adopted by adult siblings. In the present study, sibling relationships of adults with adult siblings with (N=63) and without (N=123) intellectual disability were explored. Contact, warmth, conflict, and rivalry were measured using questionnaires available as an on-line survey. Expressed emotion was measured using the Five Minute Speech Sample over the telephone to establish an independently coded measure of criticism from the participant towards their sibling. Overall, there were few group differences in contact and sibling relationship. There was less telephone contact in the intellectual disability group, and less reported warmth in the relationship with siblings with intellectual disability although this was mainly associated with severe/profound intellectual disability. Exploratory analyses were conducted of the correlates of sibling relationships in both the intellectual disability and control groups. These analyses revealed a small number of different associations especially for conflict, which was lower when either the participant or sibling was younger in the control group but associated with relative age in the intellectual disability group.

  6. 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.

  7. 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.

  8. 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.

  9. 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…

  10. 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…

  11. 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…

  12. 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

  13. 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…

  14. 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

  15. 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.

  16. 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.

  17. Sleep problems and daytime problem behaviours in children with intellectual disablity

    NARCIS (Netherlands)

    Didden, H.C.M.; Korzilius, H.P.L.M.; Aperloo, B. van; Overloon, C. van; Vries, M. de

    2002-01-01

    BACKGROUND: Sleep problems are common among children with intellectual disability (ID). METHOD: The present study assessed the prevalence of severe sleep problems in a sample of children (n=286) with mild to profound ID who lived at home with their parents(s) in the Netherlands. It also

  18. Prevalence and Associated Factors of Sarcopenia in Older Adults with Intellectual Disabilities

    Science.gov (United States)

    Bastiaanse, Luc P.; Hilgenkamp, Thessa I. M.; Echteld, Michael A.; Evenhuis, Heleen M.

    2012-01-01

    Sarcopenia is defined as a syndrome characterised by progressive and generalised loss of skeletal muscle mass and strength. It has hardly been studied in older people with intellectual disabilities (ID). In this study 884 persons with borderline to profound ID aged 50 years and over, were investigated to determine the prevalence of sarcopenia in…

  19. An Introduction to Menstrual Management for Women Who Have an Intellectual Disability and High Support Needs.

    Science.gov (United States)

    Griffen, Jeni; And Others

    1994-01-01

    This paper describes a project researching the management of menstruation for women who have severe/profound intellectual disability. It outlines the importance of acceptance of menstruation, the possibility of partial participation in menstrual care, key factors to consider in developing skill development activities (such as attitudes of care…

  20. Quality of Life and Quality of Support for People with Severe Intellectual Disability and Complex Needs

    Science.gov (United States)

    Beadle-Brown, J.; Leigh, J.; Whelton, B.; Richardson, L.; Beecham, J.; Baumker, T.; Bradshaw, J.

    2016-01-01

    Background: People with severe and profound intellectual disabilities often spend substantial time isolated and disengaged. The nature and quality of the support appears to be important in determining quality of life. Methods: Structured observations and staff questionnaires were used to explore the quality of life and quality of support for 110…

  1. Severe Intellectual Disability: Systematic Review of the Prevalence and Nature of Presentation of Unipolar Depression

    Science.gov (United States)

    Walton, Catherine; Kerr, Mike

    2016-01-01

    Background: The diagnosis of depression in severe and profound intellectual disability is challenging. Without adequate skills in verbal self-expression, standardized diagnostic criteria cannot be used with confidence. The purpose of this systematic review was to investigate the assessment and diagnosis of unipolar depression in severe and…

  2. 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…

  3. Lived experiences of student nurses caring for intellectually disabled people in a public psychiatric institution

    Directory of Open Access Journals (Sweden)

    Annie Temane

    2016-06-01

    Full Text Available Background: Caring for intellectually disabled people can be demanding for student nurses who are novices in the nursing profession. To ensure that quality nursing care is provided, student nurses should have an understanding of and a positive attitude towards intellectually disabled people. Nursing intellectually disabled people can be a challenge for the student nurses. Therefore, student nurses need to be able to deal with challenges of caring for intellectually disabled people. Objective: This article aims to explore and describe experiences of student nurses caring for intellectually disabled people in a public psychiatric institution. Design and method: A qualitative, exploratory, descriptive and contextual research design was used. Data were collected through individual in-depth phenomenological interviews, naïve sketches and field notes. Thematic analysis was utilised to analyse the collected data. Results were contextualised within the literature and measures to ensure trustworthiness were adhered to. Ethical principals were also applied throughout the research process. Results: Five themes emerged from the data. Student nurses experienced a profoundly unsettling impact on their whole being when caring for intellectually disabled people; they developed a sense of compassion and a new way of looking at life, and experienced a need for certain physical, mental and spiritual needs to be met. Conclusion: From the results, it is evident that student nurses were challenged in caring for intellectually disabled people. However, they developed a sense of awareness that intellectually disabled people have a need to be cared for like any other person. Keywords: experiences, student nurses, caring, intellectually disabled people, public psychiatric institution

  4. INTELLECTUAL DISABILITY IN INDIVIDULAS WITH MENTAL DISORDERS

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    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

  5. 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

  6. Effects of Dog-Assisted Therapy on Communication and Basic Social Skills of Adults with Intellectual Disabilities: A Pilot Study

    Science.gov (United States)

    Scorzato, Ivano; Zaninotto, Leonardo; Romano, Michela; Menardi, Chiara; Cavedon, Lino; Pegoraro, Alessandra; Socche, Laura; Zanetti, Piera; Coppiello, Deborah

    2017-01-01

    Thirty-nine adults with severe to profound intellectual disability (ID) were randomly assigned to either an experimental group (n = 21) or a control group (n = 18). Assessment was blinded and included selected items from the International Classification of Functioning, Disability and Health (ICF), the Behavioral Assessment Battery (BAB), and the…

  7. 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…

  8. 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.

  9. 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…

  10. 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…

  11. From diminished men to conditionally masculine: sexuality and Australian men and adolescent boys with intellectual disability.

    Science.gov (United States)

    Wilson, Nathan J; Parmenter, Trevor R; Stancliffe, Roger J; Shuttleworth, Russell P

    2013-01-01

    Men and boys with intellectual disability represent a unique group who have hitherto been overlooked by researchers and theorists exploring men and masculinities. Qualitative data from an Australian ethnographic study focused on the sexual health needs of men and adolescent boys with moderate to profound intellectual disability. Findings suggest that masculinity for this group of men is more a biopsychosocial phenomenon than a social construct organised around heteronormative ideals. The conditional masculinity of the men participating in the study was based instead on a number of intrinsic and external factors, which are described in detail.

  12. 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…

  13. 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.

  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. Measuring happiness in individuals with profound multiple disabilities.

    Science.gov (United States)

    Darling, Joseph A; Circo, Deborah K

    2015-12-01

    This quantitative study assessed whether presentation of preferred items and activities during multiple periods of the day (and over multiple days) increased indices of happiness (over time/sustained) in individuals with PMD. A multiple baseline design across participants was utilized to measure changes in indices of happiness of the participants. Participants were recruited from an adult day activity program specializing in providing assistance to individuals with disabilities. For Mary, baseline indices of happiness were 26.67% of intervals, increasing 6.76% during intervention to 33.43%. For Caleb, baseline indices of happiness were 20.84% of intervals, increasing 6.34% during intervention to 27.18%. For Mark, baseline indices of happiness were 40.00% of intervals, increasing 12.75% during intervention to 52.75%. Overall interobserver agreement was 82.8%, with interobserver agreement observations occurring during 63.04% of the observations. The results of the investigation demonstrated that presenting preferred items and activities increased the indices of happiness compared to baseline rates of indices of happiness. Results may have been more robust if the participants were assessed for overall responsiveness patterns prior to the initiation of measurement of indices of happiness. Copyright © 2015 Elsevier Ltd. All rights reserved.

  16. 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…

  17. 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.

  18. 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.

  19. Intellectual disability sport and Paralympic classification

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    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.

  20. 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…

  1. 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.…

  2. 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…

  3. 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,…

  4. 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…

  5. 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…

  6. 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…

  7. 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…

  8. 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'…

  9. 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.…

  10. 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…

  11. 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…

  12. 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…

  13. 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.…

  14. 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.

  15. 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.

  16. 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.

  17. 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.

  18. 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...

  19. 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.

  20. Under-diagnosis of mental disorder in people with intellectual disabilities: study of prevalence in population with different degrees of intellectual disability

    Directory of Open Access Journals (Sweden)

    Carlos PEÑA SALAZAR

    2018-03-01

    Full Text Available There are a few studies in the literature analyzing the prevalence of mental illness in people with intellectual disabilities (ID. This study explores the prevalence of mental disorders in adults without previous mental disorder and different degrees of ID. We assessed 142 individuals with varying degrees of ID and with unknown previous psychiatric disorder. We applied the diagnostic battery PAS-ADD based on criteria ICD-10 and DSM-IV TR to analyzed the prevalence of mental disorders in people with mild / moderate ID. We applied the Spanish version of the scale DASH-II to analyze the prevalence of mental disorders in people with severe and profound ID. We found a psychiatric disorder previously undiagnosed in 29.57% of our sample. In people with mild/ moderate ID the most common psychiatric disorder was depressive disorder (33.3%, but in people with severe and profound ID was the anxiety disorder. The most prevalent medical comorbidity was epilepsy (22.5% of the total sample and 39.2% in the population with severe / profound intellectual disabilities. Psychiatric disorders seem to be more common in the population with ID than in the general population, increasing their prevalence and medical comorbidity in severe and profound ID.

  1. 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.…

  2. 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…

  3. 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…

  4. Classroom Procedures for the Measurement of Behavior State among Students with Profound Disabilities.

    Science.gov (United States)

    Guy, Barbara; And Others

    1993-01-01

    This study examined whether teacher-implemented classroom measurement procedures of short duration are as reliable as methods used in research studies to determine behavior state (e.g., awake active, awake inactive, asleep, drowsed) of six students with profound mental disabilities. Results indicated that more frequent but briefer measurements…

  5. Operationalizing quality of life for people with profound multiple disabilities : a Delphi study

    NARCIS (Netherlands)

    Petry, K.; Maes, B.; Vlaskamp, C.

    Background: In a recent study, we constructed an item pool that contains items on the quality of life (QOL) and related aspects of support of people with profound multiple disabilities (PMD). In the present study, a panel of experts assessed the content and the structure of this item pool in order

  6. Bereavement and Loss: Developing a Memory Box to Support a Young Woman with Profound Learning Disabilities

    Science.gov (United States)

    Young, Hannah; Garrard, Brenda

    2016-01-01

    Supporting bereaved people with profound learning disabilities still remains an under-researched area. Moreover, the barriers of communication and disenfranchised grief mean that they often do not receive the support they require, leading to emotional and behavioural difficulties. This article describes research using a case study design, which…

  7. Visual impairments in people with severe and profound multiple disabilities: An inventory of visual functioning

    NARCIS (Netherlands)

    van den Broek, E.G.C.; Janssen, C.G.C.; van Ramshorst, T.; Deen, L.

    2006-01-01

    Background: The prevalence of visual impairments in people with severe and profound multiple disabilities (SPMD) is the subject of considerable debate and is difficult to assess. Methods: In a typical Dutch care organization, all clients with SPMD (n = 76) participated in the study and specific

  8. Severe Intellectual Disability: Systematic Review of the Prevalence and Nature of Presentation of Unipolar Depression.

    Science.gov (United States)

    Walton, Catherine; Kerr, Mike

    2016-09-01

    The diagnosis of depression in severe and profound intellectual disability is challenging. Without adequate skills in verbal self-expression, standardized diagnostic criteria cannot be used with confidence. The purpose of this systematic review was to investigate the assessment and diagnosis of unipolar depression in severe and profound intellectual disability. The review aimed to examine the methods used to assess for depression. The secondary aim was to explore the frequency and symptoms of depression. The PRISMA (2009) Checklist for systematic review was followed, and a search of electronic databases was undertaken. Nine studies were included in the qualitative synthesis from over 2000 records identified. The quality of the studies was assessed and scored, with a wide range of results. Individual studies scored between 2 and 7 of a maximum possible score of 8. The diagnostic tools utilized by each of the studies were assessed and compared. In terms of the methods used to assess for depression, results were varied. This was due to the heterogeneous nature of the individual study designs. The Aberrant Behaviour Checklist consistently showed promise, in particular when combined with other instruments or clinical examination. Qualitative analysis of the selected studies has shown a wide variation in the quality of primary research in this field, with more required to make firm conclusions regarding the diagnosis, frequency and presentation of depression in severe and profound intellectual disability. © 2015 John Wiley & Sons Ltd.

  9. 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…

  10. 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

  11. 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.

  12. Assessing Emotional and Behavioral Problems in Children with Intellectual Disability: Revisiting the Factor Structure of the Developmental Behaviour Checklist.

    Science.gov (United States)

    Dekker, Marielle C.; Nunn, Russell J.; Einfeld, Stewart E.; Tonge, Bruce J.; Koot, Hans M.

    2002-01-01

    Analysis of parent and teacher Developmental Behavior Checklist (DBC) ratings on a combined sample of 1,536 Dutch and Australian children (ages 3-22) with mild to profound intellectual disabilities produced five subscales: Disruptive/Antisocial, Self-Absorbed, Communication Disturbance, Anxiety, and Social Relating. Internal consistency of the…

  13. A Long-Term Leisure Program for Individuals with Intellectual Disability in Residential Care Settings: Research to Practice

    Science.gov (United States)

    Fox, Robert A.; Burke, Amie M.; Fung, Michael P.

    2013-01-01

    We studied the effectiveness of an individually-tailored leisure program implemented by direct care staff in a residential program for 28 adults with severe to profound intellectual disability using a multiple baseline design across two homes over a 1.5 year baseline and treatment period followed by another nearly 1.5 year maintenance phase. The…

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

    Science.gov (United States)

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

    2009-01-01

    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 questionnaires, prior to expert assessment of visual function. With linear regression analysis the percentage of variance, explained by levels of visual function, was calculated for the total population and per ID level. A total of 107/269 participants were visually impaired or blind (WHO criteria). On top of the decrease by ID visual impairment significantly decreased daily living skills, communication & language, recognition/communication. Visual impairment did not cause more self-absorbed and withdrawn behaviour or anxiety. Peculiar looking habits correlated with visual impairment and not with ID. In the groups with moderate and severe ID this effect seems stronger than in the group with profound ID. Although ID alone impairs daily functioning, visual impairment diminishes the daily functioning even more. Timely detection and treatment or rehabilitation of visual impairment may positively influence daily functioning, language development, initiative and persistence, social skills, communication skills and insecure movement.

  15. 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.

  16. 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.

  17. Epidemiology of fractures in people with severe and profound developmental disabilities

    Science.gov (United States)

    Glick, N.R.; Fischer, M.H.; Heisey, D.M.; Leverson, G.E.; Mann, D.C.

    2005-01-01

    Fractures are more prevalent among people with severe and profound developmental disabilities than in the general population. In order to characterize the tendency of these people to fracture, and to identify features that may guide the development of preventive strategies, we analyzed fracture epidemiology in people with severe and profound developmental disabilities who lived in a stable environment. Data from a 23-year longitudinal cohort registry of 1434 people with severe and profound developmental disabilities were analyzed to determine the effects of age, gender, mobility, bone fractured, month of fracture, and fracture history upon fracture rates. Eighty-five percent of all fractures involved the extremities. The overall fracture rate increased as mobility increased. In contrast, femoral shaft fracture risk was substantially higher in the least mobile [relative risk (RR), 10.36; 95% confidence interval (CI), 3.29-32.66] compared with the most mobile group. Although the overall fracture rate was not associated with age, the femoral shaft fractures decreased but hand/foot fractures increased with age. Overall fracture risk declined in August and September (RR, 0.70; 95% CI, 0.55-0.89), being especially prominent for tibial/fibular fractures (RR, 0.31; 95% CI, 0.13-0.70). Gender was not a factor in fracture risk. Two primary fracture mechanisms are apparent: one, largely associated with lack of weight-bearing in people with the least mobility, is exemplified by femoral fractures during non-traumatic events as simple as diapering or transfers; the other, probably due to movement- or fall-related trauma, is exemplified by hand/foot fractures in people who ambulate. The fracture experience of people with severe and profound developmental disabilities is unique and, because it differs qualitatively from postmenopausal osteoporosis, may require population-specific methods for assessing risk, for improving bone integrity, and for reduction of falls and accidents

  18. 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? ...

  19. 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

  20. 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 ...

  1. 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.

  2. 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.

  3. 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

  4. 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.

  5. 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...

  6. 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...

  7. 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 ...

  8. 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...

  9. 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.

  10. 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

  11. 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.

  12. 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

  13. 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…

  14. 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

  15. 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.

  16. 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.

  17. Basic life support and children with profound and multiple learning disabilities.

    Science.gov (United States)

    Cash, Stefan; Shinnick-Page, Andrea

    2008-10-01

    Nurses and other carers of people with learning disabilities must be able to manage choking events and perform basic life support effectively. UK guidelines for assessment of airway obstruction and for resuscitation do not take account of the specific needs of people with profound multiple learning disability. For example, they fail to account for inhibited gag and coughing reflexes, limited body movements or chest deformity. There are no national guidelines to assist in clinical decisions and training for nurses and carers. Basic life support training for students of learning disability nursing at Birmingham City University is supplemented to address these issues. The authors ask whether such training should be provided for all nurses including those caring for children and young people. They also invite comment and discussion on questions related to chest compression and training in basic life support for a person in a seated position.

  18. "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,…

  19. 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…

  20. 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…

  1. [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.

  2. 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.

  3. The co-occurrence of mental disorders in children and adolescents with intellectual disability/intellectual developmental disorder.

    Science.gov (United States)

    Munir, Kerim M

    2016-03-01

    The study summarizes supportive epidemiological data regarding the true co-occurrence (comorbidity) and course of mental disorders in children with intellectual disability/intellectual developmental disorders (ID/IDD) across the lifespan. Published studies involving representative populations of children and adolescents with ID/IDD have demonstrated a three to four-fold increase in prevalence of co-occurring mental disorders. The effect of age, sex, and severity (mild, moderate, severe, and profound) and socioeconomic status on prevalence is currently not clearly understood. To date there are no prevalence estimates of co-occurring mental disorders in youth identified using the new DSM-5 (and proposed ICD-11) definition of ID/IDD using measures of intellectual functions and deficits in adaptive functioning with various severity levels defined on the basis of adaptive functioning, and not intellectual quotient scores. The true relationship between two forms of morbidity remains complex and causal relationships that may be true for one disorder may not apply to another. The new conceptualization of ID/IDD offers a developmentally better informed psychobiological approach that can help distinguish co-occurrence of mental disorders within the neurodevelopmental section with onset during the developmental period as well as the later onset of other mental disorders.

  4. 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.

  5. 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.

  6. 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.

  7. 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.

  8. 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.

  9. 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.

  10. [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.

  11. 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…

  12. 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.

  13. 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

  14. 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

  15. 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

  16. 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.

  17. 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.

  18. 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.

  19. 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.

  20. 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.

  1. 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…

  2. Driving to learn in a powered wheelchair: the process of learning joystick use in people with profound cognitive disabilities.

    Science.gov (United States)

    Nilsson, Lisbeth; Eklund, Mona; Nyberg, Per; Thulesius, Hans

    2011-01-01

    The Driving to Learn project explored ways to help people with profound cognitive disabilities practice operating a joystick-operated powered wheelchair. The project used a grounded theory approach with constant comparative analysis and was carried out over 12 yr. The participants were 45 children and adults with profound cognitive disabilities. Reference groups included 17 typically developing infants and 64 participants with lesser degrees of cognitive disability. The data sources included video recordings, field notes, open interviews, and a rich mixture of literature. The findings that emerged yielded strategies for facilitating achievements, an 8-phase learning process, an assessment tool, and a grounded theory of deplateauing explaining the properties necessary for participants to exceed expected limitations and plateaus. Eight participants with profound cognitive disabilities reached goal-directed driving or higher. Participants were empowered by attaining increased control over tool use, improving their autonomy and quality of life.

  3. 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…

  4. 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…

  5. 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…

  6. 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 ...

  7. 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.

  8. 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)

  9. "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…

  10. 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…

  11. "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…

  12. 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…

  13. 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,…

  14. 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…

  15. 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.

  16. KEMANDIRIAN ANAK INTELLECTUAL DISABILITY TERKAIT DENGAN TINGKAT KEMATANGAN SOSIAL

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    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.

  17. 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.

  18. 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.

  19. 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.…

  20. 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: ...

  1. 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…

  2. 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

  3. 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.

  4. 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 ...

  5. 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…

  6. 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…

  7. 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…

  8. 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…

  9. 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.…

  10. 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…

  11. 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…

  12. 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…

  13. 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…

  14. 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

  15. 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…

  16. 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

  17. 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.

  18. 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

  19. 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.…

  20. 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…

  1. 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…

  2. 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…

  3. 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…

  4. 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…

  5. 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…

  6. 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…

  7. 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…

  8. 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…

  9. 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…

  10. 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…

  11. 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…

  12. 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…

  13. 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 ...

  14. 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, ...

  15. 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…

  16. 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

  17. 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…

  18. 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…

  19. 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…

  20. 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…

  1. 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…

  2. 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.

  3. 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.

  4. 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.

  5. 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…

  6. 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…

  7. 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.

  8. 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…

  9. 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…

  10. 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

  11. 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…

  12. 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…

  13. 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…

  14. 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

  15. 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

  16. 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.

  17. [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.

  18. 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

  19. 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

  20. 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.

  1. 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…

  2. 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…

  3. 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…

  4. The Effects of Gender and Age on Repetitive and/or Restricted Behaviors and Interests in Adults with Autism Spectrum Disorders and Intellectual Disability

    Science.gov (United States)

    Hattier, Megan A.; Matson, Johnny L.; Tureck, Kimberly; Horovitz, Max

    2011-01-01

    Frequency of repetitive and/or restricted behaviors and interests (RRBIs) was assessed in 140 adults with autism spectrum disorders (ASDs) and severe or profound intellectual disability (ID). The associations of gender and age range were analyzed with RRBI frequency which was obtained using the Stereotypies subscale of the "Diagnostic…

  5. 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.

  6. 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…

  7. 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…

  8. Problem and pro-social behavior among Nigerian children with intellectual disability: the implication for developing policy for school based mental health programs

    Directory of Open Access Journals (Sweden)

    Bakare Muideen O

    2010-05-01

    Full Text Available Abstract Background School based mental health programs are absent in most educational institutions for intellectually disabled children and adolescents in Nigeria and co-morbid behavioral problems often complicate intellectual disability in children and adolescents receiving special education instructions. Little is known about prevalence and pattern of behavioral problems existing co-morbidly among sub-Saharan African children with intellectual disability. This study assessed the prevalence and pattern of behavioral problems among Nigerian children with intellectual disability and also the associated factors. Method Teachers' rated Strengths and Difficulties Questionnaire (SDQ was used to screen for behavioral problems among children with intellectual disability in a special education facility in south eastern Nigeria. Socio-demographic questionnaire was used to obtain socio-demographic information of the children. Results A total of forty four (44 children with intellectual disability were involved in the study. Twenty one (47.7% of the children were classified as having behavioral problems in the borderline and abnormal categories on total difficulties clinical scale of SDQ using the cut-off point recommended by Goodman. Mild mental retardation as compared to moderate, severe and profound retardation was associated with highest total difficulties mean score. Males were more likely to exhibit conduct and hyperactivity behavioral problems compared to the females. The inter-clinical scales correlations of teachers' rated SDQ in the studied population also showed good internal consistency (Cronbach Alpha = 0.63. Conclusion Significant behavioral problems occur co-morbidly among Nigerian children with intellectual disability receiving special education instructions and this could impact negatively on educational learning and other areas of functioning. There is an urgent need for establishing school-based mental health program and appropriate

  9. Problem and pro-social behavior among Nigerian children with intellectual disability: the implication for developing policy for school based mental health programs

    Science.gov (United States)

    2010-01-01

    Background School based mental health programs are absent in most educational institutions for intellectually disabled children and adolescents in Nigeria and co-morbid behavioral problems often complicate intellectual disability in children and adolescents receiving special education instructions. Little is known about prevalence and pattern of behavioral problems existing co-morbidly among sub-Saharan African children with intellectual disability. This study assessed the prevalence and pattern of behavioral problems among Nigerian children with intellectual disability and also the associated factors. Method Teachers' rated Strengths and Difficulties Questionnaire (SDQ) was used to screen for behavioral problems among children with intellectual disability in a special education facility in south eastern Nigeria. Socio-demographic questionnaire was used to obtain socio-demographic information of the children. Results A total of forty four (44) children with intellectual disability were involved in the study. Twenty one (47.7%) of the children were classified as having behavioral problems in the borderline and abnormal categories on total difficulties clinical scale of SDQ using the cut-off point recommended by Goodman. Mild mental retardation as compared to moderate, severe and profound retardation was associated with highest total difficulties mean score. Males were more likely to exhibit conduct and hyperactivity behavioral problems compared to the females. The inter-clinical scales correlations of teachers' rated SDQ in the studied population also showed good internal consistency (Cronbach Alpha = 0.63). Conclusion Significant behavioral problems occur co-morbidly among Nigerian children with intellectual disability receiving special education instructions and this could impact negatively on educational learning and other areas of functioning. There is an urgent need for establishing school-based mental health program and appropriate screening measure in this

  10. 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.

  11. 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

  12. Speech and language therapists' approaches to communication intervention with children and adults with profound and multiple learning disability.

    Science.gov (United States)

    Goldbart, Juliet; Chadwick, Darren; Buell, Susan

    2014-11-01

    People with profound intellectual and multiple disabilities (PMLD) have communication impairments as one defining characteristic. To explore speech and language therapists' (SLTs) decision making in communication interventions for people with PMLD, in terms of the intervention approaches used, the factors informing the decisions to use specific interventions and the extent to which the rationales underpinning these decisions related to the components of evidence based practice (EBP), namely empirical evidence, clinical experience and client/carer views and values. A questionnaire on communication assessment and intervention for people with PMLD was sent to SLTs in the UK to elicit information on: the communication intervention approaches they used; their rationales for their intervention choices; their use of published evidence to inform decision making. Intensive interaction and objects of reference were the communication interventions most often used with people with PMLD, with some differences between children and adults evident. Rationales provided conformed somewhat to the EBP framework though extension of the existing framework and addition of practical and organizational considerations led to a revised typology of rationale for decision making. Rationales most frequently related to the empowerment, development and behavioural preferences of the person with PMLD. Empirical research evidence was seldom mentioned by SLTs as informing intervention decision making leading to very diverse practice. There is a need for further research on the effectiveness of commonly used but under-evaluated interventions. There is also a need to alert SLTs to the evidence base supporting other approaches, particularly switch-based, cause and effect approaches. © 2014 Royal College of Speech and Language Therapists.

  13. 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.

  14. 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.

  15. 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.

  16. 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.

  17. 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 ...

  18. How musical engagement promotes well-being in education contexts: The case of a young man with profound and multiple disabilities

    Science.gov (United States)

    McFerran, Katrina S.; Shoemark, Helen

    2013-01-01

    Students with profound intellectual disabilities disorders (IDDs) have the right to participate in educational opportunities that recognize their unique resources and needs, as do all children. Because of their specific communication challenges, positive relationships with attentive communication partners are critical for success. In fact, the power of positive relationships in schools is recognized to be connected to student well-being more broadly. This article examines the case of one young man with profound IDD and his relationship with his music therapist using a duo-ethnographic informed paradigmatic case study. Video analysis based on multi-voice perspectives is used to generate hermeneutic phenomenological findings to closely examine the relationship between a young man with profound IDD and a music therapist. The voices of four allied health researchers were also gathered to inform the authors’ construction of an informed commentary on the phenomenon. The results suggest that the essence lay in a combination of attentive, responsive and creative being with the other person over time. Four principles of musical engagement were identified in the video footage as critical to the meaningful relationships through music: the music therapist listens; the music therapist takes responsibility for structure; spontaneous initiation is sought from the young person; and the relationship is built over time. These concepts are contextualized within a discussion of student well-being that is underpinned by positive relationships and leads to students achieving their full potential within diverse school contexts. PMID:23930986

  19. How musical engagement promotes well-being in education contexts: the case of a young man with profound and multiple disabilities.

    Science.gov (United States)

    McFerran, Katrina S; Shoemark, Helen

    2013-08-07

    Students with profound intellectual disabilities disorders (IDDs) have the right to participate in educational opportunities that recognize their unique resources and needs, as do all children. Because of their specific communication challenges, positive relationships with attentive communication partners are critical for success. In fact, the power of positive relationships in schools is recognized to be connected to student well-being more broadly. This article examines the case of one young man with profound IDD and his relationship with his music therapist using a duo-ethnographic informed paradigmatic case study. Video analysis based on multi-voice perspectives is used to generate hermeneutic phenomenological findings to closely examine the relationship between a young man with profound IDD and a music therapist. The voices of four allied health researchers were also gathered to inform the authors' construction of an informed commentary on the phenomenon. The results suggest that the essence lay in a combination of attentive, responsive and creative being with the other person over time. Four principles of musical engagement were identified in the video footage as critical to the meaningful relationships through music: the music therapist listens; the music therapist takes responsibility for structure; spontaneous initiation is sought from the young person; and the relationship is built over time. These concepts are contextualized within a discussion of student well-being that is underpinned by positive relationships and leads to students achieving their full potential within diverse school contexts.

  20. 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…

  1. "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…

  2. Parental Adaptation to Out-of-Home Placement of a Child with Severe or Profound Developmental Disabilities

    Science.gov (United States)

    Jackson, Jeffrey B.; Roper, Susanne Olsen

    2014-01-01

    Utilizing grounded theory qualitative research methods, a model was developed for describing parental adaptation after voluntary placement of a child with severe or profound developmental disabilities in out-of-home care. Interviews of parents from 20 families were analyzed. Parents' cognitive appraisals of placement outcomes were classified…

  3. Domains of quality of life of people with profound multiple disabilities : The perspective of parents and direct support staff

    NARCIS (Netherlands)

    Petry, K; Maes, B; Vlaskamp, C

    Background This study considered the general validity of the basic domains of quality of life that appear in theoretical models, in relation to people with profound multiple disabilities. The authors examined how parents and direct support staff operationalized these basic domains for people with

  4. Camera-based microswitch technology to monitor mouth, eyebrow, and eyelid responses of children with profound multiple disabilities

    NARCIS (Netherlands)

    Lancioni, G.E.; Bellini, D.; Oliva, D.; Singh, N.N.; O'Reilly, M.F.; Sigafoos, J.; Lang, R.B.; Didden, H.C.M.

    2011-01-01

    A camera-based microswitch technology was recently used to successfully monitor small eyelid and mouth responses of two adults with profound multiple disabilities (Lancioni et al., Res Dev Disab 31:1509-1514, 2010a). This technology, in contrast with the traditional optic microswitches used for

  5. 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

  6. 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…

  7. 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.

  8. 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.

  9. 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…

  10. 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...

  11. 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 ...

  12. 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...

  13. 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...

  14. 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.

  15. 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.

  16. 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.

  17. THE ROLE OF SUPPORT GROUPS IN THE COOPERATION BETWEEN PARENTS OF PEOPLE WITH INTELLECTUAL DISABILITIES AND PROFESSIONAL STAFF

    Directory of Open Access Journals (Sweden)

    Metka NOVAK

    2014-09-01

    Full Text Available Introduction: One of the ways of building and developing a better cooperative relationship between parents of people with severe and profound intellectual disabilities and professional staff is the inclusion of parents in support groups for parents and staff in support groups for staff. Goal: To examine the correlation of the level of cooperative relationship between the parents of people with severe and profound intellectual disabilities and professional staff with the inclusion of parents in support groups for parents and staff in support groups for staff. Methodology: Respondents: parents (296 of people with severe and profound learning disabilities and staff (298 in five centres across Slovenia; Methods: descriptive statistics, test of homogeneity, the rankit method, one-way analysis of variance; Procedures: survey questionnaires for parents and staff. The data was processed using SPSS software for personal computers. Results: The difference between the variances of the groups (parent found is statistically significant (F = 6.16; p = 0.01. Staff included in support groups have a significantly lower level of cooperative relationship with parents (f=10; M = - 0.12 than staff not included in these groups (f = 191; M = 0.04. Conclusion:In contrast to theoretical findings the results indicated less successful cooperation for professional staff included in support groups. The results furthermore did not confirm any differences in the cooperative relationship of parents included in support groups and those who are not. We suggest an in-depth analysis of the workings of support groups.

  18. 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

  19. 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

  20. 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

  1. 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

  2. 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.

  3. 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:…

  4. 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…

  5. 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

  6. 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.

  7. 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.

  8. 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. ...

  9. 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.

  10. 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.

  11. 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

  12. 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...

  13. 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.

  14. 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....

  15. 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.

  16. 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.

  17. 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

  18. 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

  19. MED23-associated intellectual disability in a non-consanguineous family.

    Science.gov (United States)

    Trehan, Aditi; Brady, Jacqueline M; Maduro, Valerie; Bone, William P; Huang, Yan; Golas, Gretchen A; Kane, Megan S; Lee, Paul R; Thurm, Audrey; Gropman, Andrea L; Paul, Scott M; Vezina, Gilbert; Markello, Thomas C; Gahl, William A; Boerkoel, Cornelius F; Tifft, Cynthia J

    2015-06-01

    Intellectual disability (ID) is a heterogeneous condition arising from a variety of environmental and genetic factors. Among these causes are defects in transcriptional regulators. Herein, we report on two brothers in a nonconsanguineous family with novel compound heterozygous, disease-segregating mutations (NM_015979.3: [3656A > G];[4006C > T], NP_057063.2: [H1219R];[R1336X]) in MED23. This gene encodes a subunit of the Mediator complex that modulates the expression of RNA polymerase II-dependent genes. These brothers, who had profound ID, spasticity, congenital heart disease, brain abnormalities, and atypical electroencephalography, represent the first case of MED23-associated ID in a non-consanguineous family. They also expand upon the clinical features previously reported for mutations in this gene. © 2015 Wiley Periodicals, Inc.

  20. 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.

  1. 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.

  2. 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...

  3. 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.

  4. 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....

  5. Using Photovoice to Include People with Profound and Multiple Learning Disabilities in Inclusive Research

    Science.gov (United States)

    Cluley, Victoria

    2017-01-01

    Background: It is now expected that projects addressing the lives of people with learning disabilities include people with learning disabilities in the research process. In the past, such research often excluded people with learning disabilities, favouring the opinions of family members, carers and professionals. The inclusion of the voices of…

  6. 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.

  7. 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

  8. 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…

  9. 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…

  10. 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…

  11. 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…

  12. 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.…

  13. 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…

  14. 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…

  15. 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…

  16. 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

  17. 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…

  18. 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…

  19. 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

  20. 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…

  1. 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…

  2. 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.,…

  3. 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…

  4. 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

  5. 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.…

  6. 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…

  7. 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…

  8. 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…

  9. 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…

  10. 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…

  11. 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…

  12. 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…

  13. 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…

  14. 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…

  15. 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…

  16. 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…

  17. 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…

  18. 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…

  19. 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…

  20. 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…

  1. 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…

  2. 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…

  3. 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…

  4. 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…

  5. 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…

  6. 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…

  7. 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

  8. 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.

  9. 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

  10. 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…

  11. 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…

  12. 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…

  13. 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…

  14. 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…

  15. 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…

  16. 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…

  17. 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…

  18. 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.…

  19. 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…

  20. 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…

  1. 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…

  2. 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…

  3. 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…

  4. 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…

  5. 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…

  6. 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…

  7. 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…

  8. Effects of Dog-Assisted Therapy on Communication and Basic Social Skills of Adults With Intellectual Disabilities: A Pilot Study.

    Science.gov (United States)

    Scorzato, Ivano; Zaninotto, Leonardo; Romano, Michela; Menardi, Chiara; Cavedon, Lino; Pegoraro, Alessandra; Socche, Laura; Zanetti, Piera; Coppiello, Deborah

    2017-06-01

    Thirty-nine adults with severe to profound intellectual disability (ID) were randomly assigned to either an experimental group (n = 21) or a control group (n = 18). Assessment was blinded and included selected items from the International Classification of Functioning, Disability and Health (ICF), the Behavioral Assessment Battery (BAB), and the Learning Accomplishment Profile (LAP). The experimental group, who attended a dog-assisted treatment intervention over a 20-week period, showed significant improvements in several cognitive domains, including attention to movement (BAB-AM), visuomotor coordination (BAB-VM), exploratory play (BAB-EP), and motor imitation (BAB-CO-MI), as well as in some social skills, as measured by LAP items. Effects were specific to the intervention and independent of age or basic level of disability.

  9. 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.

  10. 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.

  11. 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.

  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. [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.

  14. 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.

  15. 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.

  16. 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.

  17. 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.

  18. 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.

  19. 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…

  20. 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.

  1. '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

  2. A Vibrotactile Interface to Motivate Movement for Children with Severe to Profound Disabilities

    DEFF Research Database (Denmark)

    Manresa-Yee, Cristina; Morrison, Ann; Larsen, Jeppe Veirum

    2014-01-01

    V-Sense is a vibrotactile interface that encourages children with severe or profound cognitive, sensory and physical impairments to move. The interface makes use of touch, in particular vibrations, as a supportive function to motivate users' actions. Specifically, we propose a vibrotactile...

  3. 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...

  4. 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...

  5. Adapting Building Design to Access by Individuals with Intellectual Disability

    Directory of Open Access Journals (Sweden)

    L Castell

    2012-11-01

    Full Text Available Over the last 15 years, since introductionof the Disability Discrimination Act (DDA(Commonwealth Government of Australia,1992, there has been much discussionabout the extent and nature of buildingaccess for the disabled, particularly inresponse to proposed revisions to theBuilding Code of Australia (BCA and theintroduction of a Premises Standardcovering building access. Much of theargument which contributed to the twoyear delay in submitting a final version ofthese documents for government approvalrelated to the extent of access provisionsand the burden of cost. The final versionsubmitted to government by the AustralianBuilding Codes Board (ABCB (notreleased publicly appears to still containinconsistencies between the DDA and theBCA in several areas such as wayfindingand egress.In the debate preceding submission of thefinal version there appears to have beenlittle reference to access requirements forindividuals with intellectual disability (ID.This may be due to a general lack ofresearch on the topic. Consequently, thispaper uses a combination of theknowledge gained from a limited numberof previous wayfinding studies, literaturedescribing general problems faced bythose with ID and the author’s personalexperience observing others with ID tocreate a list of probable difficulties andsuggested solutions. The paperconcludes with a discussion about theassociated cost implications and benefitsin providing the required access.

  6. Stair-Walking Performance in Adolescents with Intellectual Disabilities

    Directory of Open Access Journals (Sweden)

    Wann-Yun Shieh

    2016-07-01

    Full Text Available Most individuals with intellectual disabilities (ID demonstrate problems in learning and movement coordination. Consequently, they usually have difficulties in activities such as standing, walking, and stair climbing. To monitor the physical impairments of these children, regular gross motor evaluation is crucial. Straight-line level walking is the most frequently used test of their mobility. However, numerous studies have found that unless the children have multiple disabilities, no significant differences can be found between the children with ID and typically-developed children in this test. Stair climbing presents more challenges than level walking because it is associated with numerous physical factors, including lower extremity strength, cardiopulmonary endurance, vision, balance, and fear of falling. Limited ability in those factors is one of the most vital markers for children with ID. In this paper, we propose a sensor-based approach for measuring stair-walking performance, both upstairs and downstairs, for adolescents with ID. Particularly, we address the problem of sensor calibration to ensure measurement accuracy. In total, 62 participants aged 15 to 21 years, namely 32 typically-developed (TD adolescents, 20 adolescents with ID, and 10 adolescents with multiple disabilities (MD, participated. The experimental results showed that stair-walking is more sensitive than straight-line level walking in capturing gait characteristics for adolescents with ID.

  7. DIAGNOSIS AND TREATMENT OF DEPRESSION IN PERSONS WITH INTELLECTUAL DISABILITY

    Directory of Open Access Journals (Sweden)

    Katarina Tomić1,

    2011-09-01

    Full Text Available This paper considers, from the theoretical point of view, the problem of diagnosing and treatment of depressive disorders in people with intellectual disability (ID, relying primarily on the results of previous researches, which stress the etiological, symptomatic, diagnostic and therapeutic specifics when it comes to depression and its correlates in this population. The interest in mental health and psychopathology of people with ID intensified during the seventh decade of the previous century, when it became clear that some cognitive and behavioral symptoms are not, as hitherto thought, only a part or a consequence of the syndrome of intellectual disability, but a sign of ongoing mental disorder. So, the idea of ''dual diagnosis'' was born, and now it provides guidelines for the growing number of studies which theoretically and empirically review different issues of mental health problems in people with ID. Likewise, the observation of syndrome groups of genetic disorders resulting in intellectual disability has led to the narrowing of the circle of genetic syndromes that carry increased risk for the onset of depression and its correlates, such as: Down syndrome, Fragile X syndrome and Prader-Willi syndrome. Potential diagnostic problem in people with ID, when it comes to depression, may arise from ''diagnostic overshadowing’’ of depression symptoms, which often remain hidden under abnormal behavior and adjustment disorders, especially in patients with severe forms of ID. As a possible way to overcome these problems some authors have proposed the concept of ''behavioral equivalents of depression'' or behavioral disorders that evidently can be associated with depression, such as social withdrawal, aggression, hostility, irritability, psychomotor agitation or retardation. Intensification of these forms of behavior may be a sign of developing depression, and in that sense, this view represents a useful starting point. When it comes to

  8. 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.

  9. 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

  10. An ecological method for the sampling of nonverbal signalling behaviours of young children with profound and multiple learning disabilities (PMLD).

    Science.gov (United States)

    Atkin, Keith; Lorch, Marjorie Perlman

    2016-08-01

    Profound and multiple learning disabilities (PMLD) are a complex range of disabilities that affect the general health and well-being of the individual and their capacity to interact and learn. We developed a new methodology to capture the non-symbolic signalling behaviours of children with PMLD within the context of a face-to-face interaction with a caregiver to provide analysis at a micro-level of descriptive detail incorporating the use of the ELAN digital video software. The signalling behaviours of participants in a natural, everyday interaction can be better understood with the use of this innovation in methodology, which is predicated on the ecology of communication. Recognition of the developmental ability of the participants is an integral factor within that ecology. The method presented establishes an advanced account of the modalities through which a child affected by PMLD is able to communicate.

  11. How Do Children With Mild Intellectual Disabilities Perceive Loneliness?

    Directory of Open Access Journals (Sweden)

    Kalliopi Papoutsaki

    2013-02-01

    Full Text Available The present study examined 154 children with mild intellectual disability (MID attending special schools with regard to their reports of loneliness. Semi-structured interviews revealed that more than half of the students with MID reported feelings of loneliness. They tend to have as friends children from their neighborhood, friends of their siblings, children of their parents’ friends and from their school. Lonely children with MID tend to attribute their isolation to interpersonal deficits, lack of contact with peers and physical appearance, while one fourth cannot justify why they do not have any friends. Children with MID report that they withdraw from social interactions, engage in solitary activities and actively look for friends to cope with their feelings of loneliness and rejection, while very few resort to physical or verbal aggression. Moreover, boys and children living in smaller towns reported less feelings of loneliness than girls and children living in the capital.

  12. Prescribing psychotropic drugs to adults with an intellectual disability

    Science.gov (United States)

    Trollor, Julian N; Salomon, Carmela; Franklin, Catherine

    2016-01-01

    SUMMARY Mental illness is common in people with intellectual disability. They may also have physical health problems which can affect their mental state. Difficulties in communication can contribute to mental health problems being overlooked. These may present with changes in behaviour. Psychological management is usually preferable to prescribing psychotropic drugs. Behavioural approaches are the most appropriate way to manage challenging behaviour. If a drug is considered, prescribers should complete a thorough diagnostic assessment, exclude physical and environmental contributions to symptoms, and consider medical comorbidities before prescribing. Where possible avoid psychotropics with the highest cardiometabolic burden. Prescribe the minimum effective dose and treatment length, and regularly monitor drug efficacy and adverse effects. There is insufficient evidence to support the use of psychotropics for challenging behaviour. They should be avoided unless the behaviour is severe and non-responsive to other treatments. PMID:27756975

  13. 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.

  14. Participation Patterns of Preschool Children With Intellectual Developmental Disabilities.

    Science.gov (United States)

    Gilboa, Yafit; Fuchs, Reut

    2018-04-01

    We aim to examine the pattern of participation of children with intellectual developmental disabilities (IDD) or global developmental delay (GDD) in comparison with typically developing preschoolers. In addition, to identify environmental and personal factors associated with their participation, 20 children with mild to moderate GDD or IDD, and 24 age- and gender-matched controls, aged 3 to 6 years, were assessed using the Assessment of Preschool Children's Participation and the Environmental Restriction Questionnaire. Significant differences were found between the groups, both for general scales of participation and for each activity area. For the IDD/GDD group, participation was significantly negatively correlated with environmental restrictions at home. For the control group, participation was correlated with demographic variables. Typically developing children participate at a higher frequency and in a more diverse range of activities compared with children with IDD/GDD. Associations between participation and contextual factors varied depending on the child's health condition.

  15. 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

  16. Mortality Among Adults With Intellectual Disability in England: Comparisons With the General Population

    Science.gov (United States)

    Hosking, Fay J.; Shah, Sunil M.; Harris, Tess; DeWilde, Stephen; Beighton, Carole; Cook, Derek G.

    2016-01-01

    Objectives. To describe mortality among adults with intellectual disability in England in comparison with the general population. Methods. We conducted a cohort study from 2009 to 2013 using data from 343 general practices. Adults with intellectual disability (n = 16 666; 656 deaths) were compared with age-, gender-, and practice-matched controls (n = 113 562; 1358 deaths). Results. Adults with intellectual disability had higher mortality rates than controls (hazard ratio [HR] = 3.6; 95% confidence interval [CI] = 3.3, 3.9). This risk remained high after adjustment for comorbidity, smoking, and deprivation (HR = 3.1; 95% CI = 2.7, 3.4); it was even higher among adults with intellectual disability and Down syndrome or epilepsy. A total of 37.0% of all deaths among adults with intellectual disability were classified as being amenable to health care intervention, compared with 22.5% in the general population (HR = 5.9; 95% CI = 5.1, 6.8). Conclusions. Mortality among adults with intellectual disability is markedly elevated in comparison with the general population, with more than a third of deaths potentially amenable to health care interventions. This mortality disparity suggests the need to improve access to, and quality of, health care among people with intellectual disability. PMID:27310347

  17. Intelligence and specific cognitive functions in intellectual disability: implications for assessment and classification.

    Science.gov (United States)

    Bertelli, Marco O; Cooper, Sally-Ann; Salvador-Carulla, Luis

    2018-03-01

    Current diagnostic criteria for intellectual disability categorize ability as measured by IQ tests. However, this does not suit the new conceptualization of intellectual disability, which refers to a range of neuropsychiatric syndromes that have in common early onset, cognitive impairments, and consequent deficits in learning and adaptive functioning. A literature review was undertaken on the concept of intelligence and whether it encompasses a range of specific cognitive functions to solve problems, which might be better reported as a profile, instead of an IQ, with implications for diagnosis and classification of intellectual disability. Data support a model of intelligence consisting of distinct but related processes. Persons with intellectual disability with the same IQ level have different cognitive profiles, based on varying factors involved in aetiopathogenesis. Limitations of functioning and many biopsychological factors associated with intellectual disability are more highly correlated with impairments of specific cognitive functions than with overall IQ. The current model of intelligence, based on IQ, is of limited utility for intellectual disability, given the wide range and variability of cognitive functions and adaptive capacities. Assessing level of individual impairment in executive and specific cognitive functions may be a more useful alternative. This has considerable implications for the revision of the International Classification of Diseases and for the cultural attitude towards intellectual disability in general.

  18. 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.

  19. Is Celiac Disease an Etiological Factor in Children with Nonsyndromic Intellectual Disability?

    Science.gov (United States)

    Sezer, Taner; Balcı, Oya; Özçay, Figen; Bayraktar, Nilufer; Alehan, Füsun

    2016-03-01

    To determine the prevalence of celiac disease in children and adolescents with nonsyndromic intellectual disability, we investigated serum levels of tissue transglutaminase antibody and total IgA from 232 children with nonsyndromic intellectual disability and in a healthy control group of 239 children. Study participants who were positive for tissue transglutaminase antibody underwent a duodenal biopsy. A total of 3 patients in the nonsyndromic intellectual disability group (5.45%) and 1 in the control group (0.41%) had positive serum tissue transglutaminase antibody (P > .05). Duodenal biopsy confirmed celiac disease in only 1 patient who had nonsyndromic intellectual disability. In this present study, children with nonsyndromic intellectual disability did not exhibit a higher celiac disease prevalence rate compared with healthy controls. Therefore, we suggest that screening test for celiac disease should not be necessary as a part of the management of mild and moderate nonsyndromic intellectual disability. However, cases of severe nonsyndromic intellectual disability could be examined for celiac disease. © The Author(s) 2015.

  20. The effects of rehabilitation on intellectually-disabled people – a systematic review

    Directory of Open Access Journals (Sweden)

    Ernest J. Sechoaro

    2014-08-01

    Objective: To synthesise critically and summarise the best available evidence of the effects of rehabilitation on intellectually-disabled people. Method: Literature searches of different electronic databases and manual searches were conducted using selected keywords. Studies on the effects of rehabilitation on intellectually-disabled people were selected systematically, appraised critically for methodological quality and summarised. Results: Rehabilitation interventions indicated good outcomes with regard to intellectually-disabled people. Findings showed that people with mild to moderate intellectual disabilities improved in terms of activities of daily living (ADL after rehabilitation. Improvement was noted in ADL, self-care skills, communication skills and cognitive achievements. Conclusion: Findings demonstrated positive rehabilitation effects on intellectually-disabled people. This study contributes to the comprehensive nursing care of intellectually-disabled people by endorsement of the effectiveness of rehabilitation in terms of ADL, self-care skills, communication skills and cognitive achievements. The collected evidence of this study may contribute to the education of more effective nurse practitioners involved in the daily care and rehabilitation of intellectually-disabled people.

  1. The validation of an educational database for children with profound intellectual disabilities

    Directory of Open Access Journals (Sweden)

    Karlien Spangenberg

    2016-09-01

    Discussion and conclusions: A list of items to be included was identified. Apart from an individual profile, it can be useful for service planning and monitoring, if incorporated into the central information system used to monitor the performance of all children. Without such inclusion, this most vulnerable population, despite court ruling, will not have their right to education adequately addressed.

  2. A Functional Assessment of Handmouthing among Persons with Severe and Profound Intellectual Disability

    Science.gov (United States)

    Swender, Stephen L.; Matson, Johnny L.; Mayville, Stephen B.; Gonzalez, Melissa L.; McDowell, Donald

    2006-01-01

    Background: The behavioural function of handmouthing has been assessed across various studies utilising analogue functional analyses. The aim of the current study was to expand upon research on this relatively understudied behaviour by examining the relationship between handmouthing and "Gastro-Esophageal Reflux Disorder" (GERD), and the potential…

  3. Intellectual disability health content within nursing curriculum: An audit of what our future nurses are taught.

    Science.gov (United States)

    Trollor, Julian N; Eagleson, Claire; Turner, Beth; Salomon, Carmela; Cashin, Andrew; Iacono, Teresa; Goddard, Linda; Lennox, Nicholas

    2016-10-01

    Individuals with intellectual disability experience chronic and complex health issues, but face considerable barriers to healthcare. One such barrier is inadequate education of healthcare professionals. To establish the quantity and nature of intellectual disability content offered within Australian nursing degree curricula. A two-phase national audit of nursing curriculum content was conducted using an interview and online survey. Australian nursing schools offering pre-registration courses. Pre-registration course coordinators from 31 universities completed the Phase 1 interview on course structure. Unit coordinators and teaching staff from 15 universities in which intellectual disability content was identified completed the Phase 2 online survey. Quantity of compulsory and elective intellectual disability content offered (units and teaching time) and the nature of the content (broad categories, specific topics, and inclusive teaching) were audited using an online survey. Over half (52%) of the schools offered no intellectual disability content. For units of study that contained some auditable intellectual disability content, the area was taught on average for 3.6h per unit of study. Units were evenly distributed across the three years of study. Just three participating schools offered 50% of all units audited. Clinical assessment skills, and ethics and legal issues were most frequently taught, while human rights issues and preventative health were poorly represented. Only one nursing school involved a person with intellectual disability in content development or delivery. Despite significant unmet health needs of people with intellectual disability, there is considerable variability in the teaching of key intellectual disability content, with many gaps evident. Equipping nursing students with skills in this area is vital to building workforce capacity. Crown Copyright © 2016. Published by Elsevier Ltd. All rights reserved.

  4. Supporting primary healthcare professionals to care for people with intellectual disability: a research agenda.

    Science.gov (United States)

    Lennox, Nicholas; Van Driel, Mieke L; van Dooren, Kate

    2015-01-01

    The vast health inequities experienced by people with intellectual disability remain indisputable. Persistent and contemporary challenges exist for primary healthcare providers and researchers working to contribute to improvements to the health and well-being of people with intellectual disability. Over two decades after the only review of supports for primary healthcare providers was published, this paper contributes to an evolving research agenda that aims to make meaningful gains in health-related outcomes for this group. The present authors updated the existing review by searching the international literature for developments and evaluations of multinational models of care. Based on our review, we present three strategies to support primary healthcare providers: (i) effectively using what we know, (ii) considering other strategies that offer support to primary healthcare professionals and (iii) researching primary health care at the system level. Strengthening primary care by supporting equitable provision of health-related care for people with intellectual disability is a much needed step towards improving health outcomes among people with intellectual disability. More descriptive quantitative and qualitative research, as well as intervention-based research underpinned by rigorous mixed-methods evaluating these strategies at the primary care level, which is sensitive to the needs of people with intellectual disability will assist primary care providers to provide better care and achieve better health outcomes. Many people with intellectual disability have poor health. The authors reviewed what has been written by other researchers about how to improve the health of people with intellectual disability. In the future, people who support adults with intellectual disability should continue doing what they do well, think of other ways to improve health, and do more research about health. At all times, the needs of people with intellectual disability should be the

  5. 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

  6. Community Involvement of Young Adults with Intellectual Disabilities: Their Experiences and Perspectives on Inclusion.

    Science.gov (United States)

    Hall, Sarah A

    2017-09-01

    Inclusion in the community is essential to enhancing a person's quality of life. Although people with intellectual disabilities have a desire to be more involved in activities, they experience barriers that limit their inclusion. The purpose of this study was to describe the community involvement of young adults with intellectual disability. I interviewed fourteen young adults with intellectual disability to explore their involvement in work, recreation and leisure activities. Four themes emerged from the data: vocational endeavours, leisure pursuits, social inclusion and supports. The contexts of their experiences either facilitated or hindered their community involvement. The community involvement of young adults with intellectual disability varies depending on the opportunities and supports available to them. Their inclusion in the community may be enhanced by additional transportation options, continuing education in vocational and social skills, personalized guidance from group members and environments that are welcoming to people with disabilities. © 2016 John Wiley & Sons Ltd.

  7. 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.

  8. Non-verbal communication between nurses and people with an intellectual disability: a review of the literature.

    Science.gov (United States)

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

    2010-12-01

    This article critically synthesizes current literature regarding communication between nurses and people with an intellectual disability who communicate non-verbally. The unique context of communication between the intellectual disability nurse and people with intellectual disability and the review aims and strategies are outlined. Communication as a concept is explored in depth. Communication between the intellectual disability nurse and the person with an intellectual disability is then comprehensively examined in light of existing literature. Issues including knowledge of the person with intellectual disability, mismatch of communication ability, and knowledge of communication arose as predominant themes. A critical review of the importance of communication in nursing practice follows. The paucity of literature relating to intellectual disability nursing and non-verbal communication clearly indicates a need for research.

  9. Beyond Specialist Programmes: A Study of the Needs of Offenders with Intellectual Disability Requiring Psychiatric Attention

    Science.gov (United States)

    Glaser, W.; Florio, D.

    2004-01-01

    Despite the increased prevalence of psychiatric disorder amongst offenders with an intellectual disability (ID), there is very little known about the characteristics and needs of those with dual disability. A study of admissions to a new community forensic dual disability clinic during the first 10 months of its operation. Typically, the offenders…

  10. Sex Offenders with Intellectual Disabilities and Their Academic Observers: Popular Methodologies and Research Interests

    Science.gov (United States)

    Hollomotz, A.

    2014-01-01

    Background: Over the past two decades, disability activists and scholars have developed research paradigms that aim to place (some of the) control over the research process in the hands of disabled people. This paper discusses the appropriateness of applying such paradigms to sex offenders with intellectual disabilities (ID). It exposes to what…

  11. Alleviating Parenting Stress in Parents with Intellectual Disabilities : A Randomized Controlled Trial of a Video-feedback Intervention to Promote Positive Parenting

    NARCIS (Netherlands)

    Hodes, Marja W.; Meppelder, Marieke; de Moor, Marleen; Kef, Sabina; Schuengel, Carlo

    2017-01-01

    Background: Adapted parenting support may alleviate the high levels of parenting stress experienced by many parents with intellectual disabilities. Methods: Parents with mild intellectual disabilities or borderline intellectual functioning were randomized to experimental (n = 43) and control

  12. Dr. Tulp attends the soft machine: patient simulators, user involvement and intellectual disability.

    Science.gov (United States)

    McClimens, Alex; Lewis, Robin; Brewster, Jacqui

    2012-09-01

    Simulation as a way to teach clinical skills attracts much critical attention. Its benefits, however, might be significantly reduced when the simulation model used relies exclusively on patient simulators. This is particularly true if the intended patient population for students taught is characterized by intellectual disability. Learning to care for people with intellectual disability might be better supplemented when the simulation model used incorporates input from 'real' people. If these people themselves have intellectual disabilities then the verisimilitude of the simulation will be higher and the outcomes for learners and potential patients will also be improved.

  13. Parents as experts : the position of parents of children with profound multiple disabilities

    NARCIS (Netherlands)

    de Geeter, K.I.; Poppes, P.; Vlaskamp, C.

    2002-01-01

    Background Parents of children with disabilities are increasingly considered as experts in the field of care. Their expertise can deliver an important contribution towards planning their child's care and education. The law is increasingly taking this factor into consideration. On the one hand,

  14. Verbal and Nonverbal Communication of Students with Severe and Profound Disabilities

    Science.gov (United States)

    Tabacaru, Cristina Dumitru

    2016-01-01

    The article aims to study ways of achieving human rights by offering everyone a voice, a communicational tool which will allow accessibility and access to quality education for all, regardless of the degree of disability. The main objective of the present study was to describe the profile of communication and study the use of verbal and nonverbal…

  15. Inclusion in political and public life: the experiences of people with intellectual disability on government disability advisory bodies in Australia.

    Science.gov (United States)

    Frawley, Patsie; Bigby, Christine

    2011-03-01

    Civil and political participation lies at the core of citizenship. Increasingly, people with intellectual disability are members of disability advisory bodies. This study investigated the political orientations of advisory body members with intellectual disability, their participatory experiences, and the types of support they received. The 9 people with intellectual disability who in 2005 were members of disability advisory bodies at a state, national, and Victorian local government level were interviewed, together with 12 other members or secretariat staff of these bodies. Observations were also conducted of advisory body meetings. The political perspective of members with intellectual disability varied, but all had a background in self-advocacy. They found the work hard but rewarding and encountered both practical and intangible obstacles to participation. Members received varying types of practical support, but a supportive collegial milieu was characteristic among members who felt most confident about their participation. The milieu, structures, and processes of advisory bodies must all be adjusted to accommodate people with intellectual disability if they are to participate meaningfully.

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

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    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.’

  17. Treatments for the challenging behaviours of adults with intellectual disabilities.

    Science.gov (United States)

    Matson, Johnny L; Neal, Daniene; Kozlowski, Alison M

    2012-10-01

    To provide an overview and critical assessment of common problems and best evidence practice in treatments for the challenging behaviours (CBs) of adults with intellectual disabilities (IDs). Commonly observed problems that present obstacles to successful treatment plans are discussed, followed by an analysis of available research on the efficacy of behavioural and pharmacological therapies. Behavioural and pharmacological interventions are most commonly used when addressing CBs in people with IDs. However, within each of these techniques, there are methods that have support in the literature for efficacy and those that do not. As clinicians, it is important to follow research so that we are engaging in best practices when developing treatment plans for CBs. One of the most consuming issues for psychiatrists and other mental health professionals who work with people who evince developmental disabilities, such as IDs, are CBs. These problems are very dangerous and are a major impediment to independent, less restrictive living. However, there is a major gap between what researchers show is effective and much of what occurs in real-world settings.

  18. 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.

  19. Minor Neurological Dysfunctions (MNDs in Autistic Children without Intellectual Disability

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    Gabriele Tripi

    2018-04-01

    Full Text Available Background: Children with autism spectrum disorder (ASD require neurological evaluation to detect sensory-motor impairment. This will improve understanding of brain function in children with ASD, in terms of minor neurological dysfunctions (MNDs. Methods: We compared 32 ASD children without intellectual disability (IQ ≥ 70 with 32 healthy controls. A standardized and age-specific neurological examination according to Touwen was used to detect the presence of MNDs. Particular attention was paid to severity and type of MNDs. Results: Children with ASD had significantly higher rates of MNDs compared to controls (96.9% versus 15.6%: 81.3% had simple MNDs (p < 0.0001 and 15.6% had complex MNDs (p = 0.053. The prevalence of MNDs in the ASD group was significantly higher (p < 0.0001 than controls. With respect to specific types of MNDs, children with ASD showed a wide range of fine manipulative disability, sensory deficits and choreiform dyskinesia. We also found an excess of associated movements and anomalies in coordination and balance. Conclusions: Results replicate previous findings which found delays in sensory-motor behavior in ASD pointing towards a role for prenatal, natal and neonatal risk factors in the neurodevelopmental theory of autism.

  20. Validation of intellectual disability coding through hospital morbidity records using an intellectual disability population-based database in Western Australia.

    Science.gov (United States)

    Bourke, Jenny; Wong, Kingsley; Leonard, Helen

    2018-01-23

    To investigate how well intellectual disability (ID) can be ascertained using hospital morbidity data compared with a population-based data source. All children born in 1983-2010 with a hospital admission in the Western Australian Hospital Morbidity Data System (HMDS) were linked with the Western Australian Intellectual Disability Exploring Answers (IDEA) database. The International Classification of Diseases hospital codes consistent with ID were also identified. The characteristics of those children identified with ID through either or both sources were investigated. Of the 488 905 individuals in the study, 10 218 (2.1%) were identified with ID in either IDEA or HMDS with 1435 (14.0%) individuals identified in both databases, 8305 (81.3%) unique to the IDEA database and 478 (4.7%) unique to the HMDS dataset only. Of those unique to the HMDS dataset, about a quarter (n=124) had died before 1 year of age and most of these (75%) before 1 month. Children with ID who were also coded as such in the HMDS data were more likely to be aged under 1 year, female, non-Aboriginal and have a severe level of ID, compared with those not coded in the HMDS data. The sensitivity of using HMDS to identify ID was 14.7%, whereas the specificity was much higher at 99.9%. Hospital morbidity data are not a reliable source for identifying ID within a population, and epidemiological researchers need to take these findings into account in their study design. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  1. Predictors of future caregiving by adult siblings of individuals with intellectual and developmental disabilities.

    Science.gov (United States)

    Burke, Meghan M; Taylor, Julie Lounds; Urbano, Richard; Hodapp, Robert M

    2012-01-01

    With the growing life expectancy for individuals with intellectual and developmental disabilities, siblings will increasingly assume responsibility for the care of their brother or sister with intellectual and developmental disabilities. Using a 163-item survey completed by 757 siblings, the authors identified factors related to future caregiving expectations. Siblings expected to assume greater caregiving responsibility for their brother or sister with disabilities if they were female, had closer relationships with and lived closer to their brother or sister with intellectual and developmental disabilities, and were the lone sibling without a disability. Siblings who expected to assume higher levels of caregiving had parents who were currently more able to care for their brother or sister with disabilities. With a better understanding of who intends to fulfill future caregiving roles, support can be provided to these siblings.

  2. Indigenous Australians, Intellectual Disability and Incarceration: A Confluence of Rights Violations

    Directory of Open Access Journals (Sweden)

    Claire E. Brolan

    2018-02-01

    Full Text Available Abstract: This article reviews the health and wellbeing of Aboriginal and Torres Strait Islander Australians with intellectual disability in the Australian prison system through a human rights lens. There is an information gap on this group of Australian prisoners in the health and disability literature and the multi-disciplinary criminal law and human rights law literature. This article will consider the context of Indigenous imprisonment in Australia and examine the status of prisoner health in that country, as well as the status of the health and wellbeing of prisoners with intellectual disability. It will then specifically explore the health, wellbeing and impact of imprisonment on Indigenous Australians with intellectual disability, and highlight how intersectional rights deficits (including health and human rights deficits causally impact the ability of Indigenous Australians with intellectual disability to access due process, equal recognition and justice in the criminal justice and prison system. A central barrier to improving intersectional and discriminatory landscapes relating to health, human rights and justice for Indigenous Australian inmates with intellectual disability, and prisoners with intellectual disability more broadly in the Australian context, is the lack of sufficient governance and accountability mechanisms (including Indigenous-led mechanisms to enforce the operationalisation of consistent, transparent, culturally responsive, rights-based remedies.

  3. 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.

  4. 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.

  5. Non-suicidal self-injury among children with hearing loss and intellectual disability.

    Science.gov (United States)

    Akram, Bushra; Tariq, Amina; Rafi, Zeeshan

    2017-10-01

    To find the prevalence and to identify the predictors of non-suicidal self-injury among school-going children.. This cross-sectional study was conducted at the University of Gujrat, Gujrat Pakistan, from September 2015 to October 2016, and comprised children with intellectual disability and hearing loss. Participants were recruited from schools for special children located in Gujranwala, Jhelum and Gujrat. Multistage stratified sampling technique was used. Of the 325 children, 178(50.4%) had intellectual disability and 175(49.6%) had hearing loss. Findings indicated that the prevalence of self-injurious behaviour was higher in children with intellectual disability 48(27%) compared to their counterparts with hearing loss 3(2%). Neural network, when administered on whole data set, indicated type of disability 0.474(100%), education/training 0.99(20.9%) and access of counselling 0.114(24%) as important predictors of non-suicidal self-injury in both groups. On the other hand, the degree of disability (hearing loss 0.42[100%]; intellectual disability 0.32[100%]), education/ training (hearing loss 0.18[43%]; intellectual disability 0.27[84.5%]) and access of counselling (hearing loss 0.175[41.8%]; intellectual disability 0.256[78.7%]) were important predictors of non-suicidal self-injury among the participants, when neural network was run on the split files on the basis of disability. The prevalence of non-suicidal self-injury among children with intellectual disability was higher as compared to those with hearing loss.

  6. Feasibility of bioelectrical impedance analysis in persons with severe intellectual and visual disabilities

    NARCIS (Netherlands)

    Havinga-Top, Thamar; Waninge, Aly; van der Schans, Cees; Jager, Harriët

    2015-01-01

    Background: Body composition measurements provide importanti nformation about physical fitness and nutritional status. People with severe intellectual and visual disabilities (SIVD) have an increased risk for altered body composition. Bioelectrical impedance analysis (BIA) has been evidenced as a

  7. Feasibility of bioelectrical impedance analysis in persons with severe intellectual and visual disabilities

    NARCIS (Netherlands)

    Havinga-Top, A. M.; Waninge, A.; van der Schans, C. P.; Jager-Wittenaar, H.

    2015-01-01

    Background: Body composition measurements provide important information about physical fitness and nutritional status. People with severe intellectual and visual disabilities (SIVD) have an increased risk for altered body composition. Bioelectrical impedance analysis (BIA) has been evidenced as a

  8. 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

  9. Effectiveness of low intensity behavioral treatment for children with autism spectrum disorder and intellectual disability

    NARCIS (Netherlands)

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

    2013-01-01

    To determine the effectiveness of low intensity behavioral treatment (LIBT) supplementing regular treatment in young children with autism spectrum disorder (ASD) and intellectual disability (ID) standardized tests of cognition, adaptive behavior, interpersonal relations, play, language,

  10. Mutations in SPATA5 Are Associated with Microcephaly, Intellectual Disability, Seizures, and Hearing Loss

    NARCIS (Netherlands)

    Tanaka, Akemi J.; Cho, Megan T.; Millan, Francisca; Juusola, Jane; Retterer, Kyle; Joshi, Charuta; Niyazov, Dmitriy; Garnica, Adolfo; Gratz, Edward; Deardorff, Matthew; Wilkins, Alisha; Ortiz-Gonzalez, Xilma; Mathews, Katherine; Panzer, Karin; Brilstra, Eva; Van Gassen, Koen L I; Volker-Touw, Catharina M L; van Binsbergen, Ellen; Sobreira, Nara; Hamosh, Ada; McKnight, Dianalee; Monaghan, Kristin G.; Chung, Wendy K.

    2015-01-01

    Using whole-exome sequencing, we have identified in ten families 14 individuals with microcephaly, developmental delay, intellectual disability, hypotonia, spasticity, seizures, sensorineural hearing loss, cortical visual impairment, and rare autosomal-recessive predicted pathogenic variants in

  11. Parenting stress and child behaviour problems among parents with intellectual disabilities: the buffering role of resources

    NARCIS (Netherlands)

    Meppelder, H.M.; Hodes, M.W.; Kef, S.; Schuengel, C.

    2015-01-01

    Background: Parents with intellectual disabilities (ID) are at risk for high levels of parenting stress. The present study evaluated resources, including parental adaptive functioning, financial resources and access to a support network, as moderators of the association between child behaviour

  12. 76 FR 29250 - President's Committee for People With Intellectual Disabilities; Notice of Meeting

    Science.gov (United States)

    2011-05-20

    ... Genevieve Swift, PCPID Executive Administrative Assistant, via e-mail at Edith.Swift@acf.hhs.gov , or via... contact Laverdia Taylor Roach, Director, President's Committee for People with Intellectual Disabilities...

  13. Measuring body composition and energy expenditure in children with severe neurologic impairment and intellectual disability

    NARCIS (Netherlands)

    Rieken, Rob; van Goudoever, Johannes B.; Schierbeek, Henk; Willemsen, Sten P.; Calis, Elsbeth A. C.; Tibboel, Dick; Evenhuis, Heleen M.; Penning, Corine

    2011-01-01

    Accurate prediction equations for estimating body composition and total energy expenditure (TEE) in children with severe neurologic impairment and intellectual disability are currently lacking. The objective was to develop group-specific equations to predict body composition by using

  14. Attitudes and dilemmas of caregivers supporting people with intellectual disabilities who have diabetes.

    NARCIS (Netherlands)

    Cardol, M.; Rijken, M.; Schrojenstein Lantman-de Valk, H. van

    2012-01-01

    Objective: To explore how professional caregivers in communal living arrangements support people with a mild or moderate intellectual disability (ID) who have diabetes. Methods: A qualitative study, 13 caregivers participated in semi-structured interviews. Results: Professional caregiver support in

  15. Modification of motivational interviewing for use with people with mild intellectual disability and challenging behavior

    NARCIS (Netherlands)

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

    2013-01-01

    Background Motivational interviewing is a promising method to increase treatment motivation for people with mild intellectual disability and challenging behaviour. The purpose of the present study was to identify how professionals could adapt motivational interviewing techniques for use with

  16. Leveraging Social Capital of Individuals with Intellectual Disabilities through Participation on Facebook.

    Science.gov (United States)

    Shpigelman, Carmit-Noa

    2018-01-01

    Participation in social networking sites has considerable potential to leverage the individual's social capital, including persons with intellectual disabilities, whose real-world social networks are fairly limited. This study aimed to understand how individuals with intellectual disabilities use Facebook to access social capital benefits, if at all. Qualitative interviews and observations were conducted with 20 adult Facebook users with intellectual disabilities. The online participation enhanced their bonding social capital as well as contributed to their psychological well-being through increasing their online visibility, popularity and sense of belonging. At the same time, they experienced stress and frustration due to usage difficulties, which prevented them from enhancing their bridging social capital. Participation in social networking sites may also leverage bridging social capital of persons with intellectual disabilities, but they need a more accessible platform and ongoing support to ensure safe and fruitful participation. © 2016 John Wiley & Sons Ltd.

  17. The analysis of challenging relations : Influences on interactive behaviour of staff towards clients with intellectual disabilities

    NARCIS (Netherlands)

    Willems, A.P.A.M.; Embregts, P.J.C.M.; Bosman, A.M.T.; Hendriks, A.H.C.

    2014-01-01

    Background Relationships between support staff and clients with intellectual disability (ID) are important for quality of care, especially when dealing with challenging behaviour. Building upon an interpersonal model, this study investigates the influence of client challenging behaviour, staff

  18. Shifting Diagnostic Systems for Defining Intellectual Disability in Death Penalty Cases: Hall vs. Florida

    Science.gov (United States)

    Mukherjee, Mina; Westphal, Alexander

    2015-01-01

    The case of Hall vs. Florida tested Florida's so called "bright line rule" in determining intellectual disability in capital cases. The Supreme Court Decision reflects a more general trend from categorical to dimensional approaches in psychiatric diagnostic systems.

  19. Attitudes and dilemmas of caregivers supporting people with intellectual disabilities who have diabetes.

    NARCIS (Netherlands)

    Cardol, M.; Rijken, M.; Schrojenstein Lantman-de Valk, H.M. van

    2012-01-01

    OBJECTIVE: To explore how professional caregivers in communal living arrangements support people with a mild or moderate intellectual disability (ID) who have diabetes. METHODS: A qualitative study, 13 caregivers participated in semi-structured interviews. RESULTS: Professional caregiver support in

  20. Seizure pattern-specific epileptic epoch detection in patients with intellectual disability

    NARCIS (Netherlands)

    Wang, L.; Arends, J.B.A.M.; Long, X.; Cluitmans, P.J.M.; van Dijk, J.P.

    Electroencephalogram (EEG) features are crucial for the seizure detection performance. Traditional algorithms are designed for a population with normal brain development. However, for patients with an intellectual disability the seizure detection performance is still largely unknown. In addition,