Social Inclusion and Community Participation of Individuals with Intellectual/Developmental Disabilities

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Amado, Angela Novak; Stancliffe, Roger J.; McCarron, Mary; McCallion, Philip

2013-01-01

As more individuals with intellectual/developmental disabilities are physically included in community life, in schools, neighborhoods, jobs, recreation, and congregations, the challenge of going beyond physical inclusion to true social inclusion becomes more apparent. This article summarizes the status of the research about community participation…

Prevalence of mental illness, intellectual disability, and developmental disability among homeless people in Nagoya, Japan: A case series study.

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Nishio, Akihiro; Yamamoto, Mayumi; Ueki, Hirofumi; Watanabe, Takahiro; Matsuura, Kenshin; Tamura, Osamu; Uehara, Ryosuke; Shioiri, Toshiki

2015-09-01

While it has been reported that the prevalence of mental illness is higher in homeless people than in the national population, few studies have investigated the prevalence of intellectual and developmental disability among the homeless. In this study, we conducted a survey to comprehensively assess these mental problems among homeless people in Nagoya, Japan. The subjects were 18 homeless men. Mental illness was diagnosed with semi-structured interviews conducted by psychiatrists. We used the Wechsler Adult Intelligence Scale III to diagnose intellectual disability. Discrepancies between Wechsler Adult Intelligence Scale III subtest scores were used as criteria for developmental disability. Eleven of the 18 participants were diagnosed with mental illness: six with mood disorder, two with psychotic disorder, and six with alcohol problems. The mean IQ of all subjects was 83.4 ± 27.4. The 95% confidence interval (CI) was 96.2-69.1. Seven participants were found to have intellectual disability. Three men showed discrepancies of more than 10 between subtest scores, and all of them were diagnosed with a mental illness. We divided the participants into four groups: those with mental illness only; those with intellectual disability only; those with both problems; and those without diagnosis. The men with intellectual disability only were significantly younger and had been homeless since a younger age than the other groups. Participants diagnosed with a mental illness had been homeless for longer than those without mental health problems. Although the sample size was limited, this study revealed the high prevalence of mental illness and intellectual disability, 61% (95%CI, 35-83%) and 39% (95%CI, 17-64%), respectively, in homeless people in Nagoya, Japan. © 2014 The Authors. Psychiatry and Clinical Neurosciences © 2014 Japanese Society of Psychiatry and Neurology.

Housing and Independent Living for Individuals with Intellectual and Developmental Disabilities

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Leach, Debra

2016-01-01

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

Informing and Equipping Parents of People with Intellectual and Developmental Disabilities

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Gilson, Cathy B.; Bethun, Lauren K.; Carter, Erik W.; McMillan, Elise D.

2017-01-01

The importance of supporting families with members who have intellectual and developmental disabilities (IDD) is well established in both policy and research. Yet little is known about how familiar parents are with existing resources (e.g., programs, supports, trainings), what information they would consider most helpful, and how they would prefer…

Family Perspectives on Integrated Employment for Adults with Intellectual and Developmental Disabilities

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Gilson, Carly B.; Carter, Erik W.; Bumble, Jennifer L.; McMillan, Elise D.

2018-01-01

Families are essential partners in efforts to elevate the employment outcomes of adults with intellectual and developmental disabilities (IDD). We examined the employment-related expectations, preferences, and concerns of 673 parents and other family members of adults with IDD. Participants prioritized paid integrated employment over sheltered…

A Delphi Study on Staff Bereavement Training in the Intellectual and Developmental Disabilities Field

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Gray, Jennifer A.; Truesdale, Jesslyn

2015-01-01

The Delphi technique was used to obtain expert panel consensus to prioritize content areas and delivery methods for developing staff grief and bereavement curriculum training in the intellectual and developmental disabilities (IDD) field. The Delphi technique was conducted with a panel of 18 experts from formal and informal disability caregiving,…

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

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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.

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.

Treatment of Obesity among Youth with Intellectual and Developmental Disabilities: An Emerging Role for Telenursing

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Bennett, Elizabeth Anne; Kolko, Rachel; Chia, Lichun; Elliott, Jennifer Padden; Kalarchian, Melissa Ann

2018-01-01

Childhood obesity is a serious health issue, associated with medical comorbidity and psychosocial impairment that can persist into adulthood. In the United States, youth with intellectual and developmental disabilities are more likely to be obese than youth without disabilities. A large body of evidence supports the efficacy of family-based treatment of childhood obesity, including diet, physical activity, and behavior modification, but few interventions have been developed and evaluated specifically for this population. We highlight studies on treatment of obesity among youth with intellectual and developmental disabilities, including both residential/educational settings as well as outpatient/hospital settings. All interventions were delivered in-person, and further development of promising approaches and delivery via telenursing may increase access by youth and families. Nursing scientists can assume an important role in overcoming barriers to care for this vulnerable and underserved population. PMID:28349744

Expectations from different perspectives on future work outcome of young adults with intellectual and developmental disabilities.

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Holwerda, Anja; Brouwer, Sandra; de Boer, Michiel R; Groothoff, Johan W; van der Klink, Jac J L

2015-03-01

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 disabilities from special needs education, their parents and their school teachers regarding future work and the extent to which these expectations predict work outcome. Data on 341 young adults with intellectual or developmental disabilities, coming from special needs education, aged 17-20 years, and with an ability to work according to the Social Security Institute were examined. The school teacher's expectation was the only perspective that significantly predicted entering competitive employment, with a complementary effect of the expectation of parents and a small additional effect of the expectation of the young adult. Expectations of school teachers and parents are valuable in predicting work outcome. Therefore, it is important for professionals working with the young adult in the transition from school to work to incorporate the knowledge of school teachers and parents regarding the abilities of the young adult to enter competitive employment as a valuable source of information.

Sibling Caregivers of People With Intellectual and Developmental Disabilities: Sociodemographic Characteristics and Material Hardship Prevalence.

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Sonik, Rajan A; Parish, Susan L; Rosenthal, Eliana S

2016-10-01

In growing numbers, people with intellectual and developmental disabilities are outliving their parents, or at least their parents' ability to care for them. Consequently, adult siblings without intellectual and developmental disabilities are increasingly taking on primary caregiving responsibilities. However, adult siblings have received little study generally, and sibling caregivers have received even less. We used nationally representative data from the Survey of Income and Program Participation (SIPP) to describe the social characteristics and material hardship levels of sibling caregivers, in comparison to the general working age adult population. This study finds moderate material hardship to be pervasive among sibling caregivers, though extreme levels of hardship are possibly being abated somewhat through public benefit programs. Implications for greater service needs are discussed.

Reproductive Cancer Treatment Hospitalizations of U.S. Women with Intellectual and Developmental Disabilities

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Parish, Susan L.; Son, Esther; Powell, Robyn M.; Igdalsky, Leah

2018-01-01

There is a dearth of existing research on the treatment of reproductive cancers among women with intellectual and developmental disabilities (IDD). This study analyzed the 2010 Healthcare Cost and Utilization Project Nationwide Inpatient Sample and compared the prevalence of reproductive cancer treatment hospitalization discharges among women with…

Psychometrics and utility of Psycho-Educational Profile-Revised as a developmental quotient measure among children with the dual disability of intellectual disability and autism.

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Alwinesh, Merlin Thanka Jemi; Joseph, Rachel Beulah Jansirani; Daniel, Anna; Abel, Julie Sandra; Shankar, Satya Raj; Mammen, Priya; Russell, Sushila; Russell, Paul Swamidhas Sudhakar

2012-09-01

There is no agreement about the measure to quantify the intellectual/developmental level in children with the dual disability of intellectual disability and autism. Therefore, we studied the psychometric properties and utility of Psycho-Educational Profile-Revised (PEP-R) as a developmental test in this population. We identified 116 children with dual disability from the day care and inpatient database of a specialised Autism Clinic. Scale and domain level scores of PEP-R were collected and analyzed. We examined the internal consistency, domain-total correlation of PEP-R and concurrent validity of PEP-R against Gesell's Developmental Schedule, inter-rater and test-retest reliability and utility of PEP-R among children with dual disability in different ages, functional level and severity of autism. Besides the adequate face and content validity, PEP-R demonstrates a good internal consistency (Cronbach's α ranging from 0.91 to 0.93) and domain-total correlation (ranging from 0.75 to 0.90). The inter-rater reliability (intraclass correlation coefficient, ICC = 0.96) and test-retest reliability (ICC = 0.87) for PEP-R is good. There is moderate-to-high concurrent validity with GDS (r ranging from 0.61 to 0.82; all Ps = 0.001). The utility of PEP-R as a developmental measure was good with infants, toddlers, pre-school and primary school children. The ability of PEP-R to measure the developmental age was good, irrespective of the severity of autism but was better with high-functioning children. The PEP-R as an intellectual/developmental test has strong psychometric properties in children with dual disability. It could be used in children with different age groups and severity of autism. PEP-R should be used with caution as a developmental test in children with dual disability who are low functioning.

Understanding intellectual disability through RASopathies.

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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.

Implementation of inclusive education for children with intellectual and developmental disabilities in African countries: a scoping review.

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Okyere, Christiana; Aldersey, Heather Michelle; Lysaght, Rosemary; Sulaiman, Surajo Kamilu

2018-04-25

To advance understanding of practices that support inclusion of children with intellectual and developmental disabilities in inclusive education classrooms in Africa by conducting a review of the extant literature. Five academic databases were searched supplemented by a hand search of key journals and references of included studies. Two authors independently screened studies via a reference manager (Covidence) which allowed for blinding. A third author was consulted in cases of conflict. Thirty articles that provided empirical evidence of inclusive education implementation were included. Eight articles highlighted practices that support inclusion of children with intellectual and developmental disabilities. Using Bronfenbrenner's bioecological framework, findings revealed that inclusive education implementation is influenced by factors on the bio level, micro level, meso level, and macro level. Recommendations for promoting inclusive education implementation are provided. Inclusion goes beyond teachers and requires strong commitment of other stakeholders such as families and governments. To guarantee the smooth inclusion of children with special education needs and particularly with intellectual and developmental disabilities, a set of practices validated through rigorous research as supportive and unique and that can be universal to Africa is wise. Implications for rehabilitation A number of strategies were identified that can improve the classroom inclusion of children with intellectual and developmental disabilities. Development of policies that support such strategies could improve implementation. Inclusion goes beyond teachers. Rehabilitation professionals (i.e. occupational therapists) and educational professionals should partner to identify practical solutions to the challenges of creating inclusive environments for children with special education needs. Committing more resources and time towards the development and implementation of special education

Timing of First Dental Checkup for Newly Medicaid-Enrolled Children with an Intellectual or Developmental Disability

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Chi, Donald L.; Momany, Elizabeth T.; Jones, Michael P.; Kuthy, Raymond; Damiano, Peter C.

2012-01-01

We compared the extent to which having an intellectual or developmental disability was associated with rates at which Iowa Medicaid-enrolled children ages 3 to 8 had first dental checkups after an initial dental examination. We hypothesized that these children would have later first dental checkups than would children without an intellectual or…

Computerised Attention Training for Children with Intellectual and Developmental Disabilities: A Randomised Controlled Trial

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Kirk, Hannah E.; Gray, Kylie M.; Ellis, Kirsten; Taffe, John; Cornish, Kim M.

2016-01-01

Background: Children with intellectual and developmental disabilities (IDD) experience heightened attention difficulties which have been linked to poorer cognitive, academic and social outcomes. Although, increasing research has focused on the potential of computerised cognitive training in reducing attention problems, limited studies have…

Learning to Apply Algebra in the Community for Adults with Intellectual Developmental Disabilities

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Rodriguez, Anthony M.

2016-01-01

Students with intellectual and developmental disabilities (IDD) are routinely excluded from algebra and other high-level mathematics courses. High school students with IDD take courses in arithmetic and life skills rather than having an opportunity to learn algebra. Yet algebra skills can support the learning of money and budgeting skills. This…

Barriers to Sexuality for Individuals with Intellectual and Developmental Disabilities: A Literature Review

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Sinclair, James; Unruh, Deanne; Lindstrom, Lauren; Scanlon, David

2015-01-01

Individuals with intellectual and developmental disabilities (ID/DD) experience multiple barriers that may prevent them from understanding and exploring their own sexuality. These barriers prevent them from achieving the same autonomy and quality of life as their peers. This research synthesis focuses on 13 articles published between 2000 and 2013…

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

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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…

Why reinvent the wheel? A behaviour analyst's reflections on pedagogy for inclusion for students with intellectual and developmental disability.

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Dillenburger, Karola

2012-06-01

The number of children identified as having intellectual or developmental disability is rising worldwide and their education has been found wanting. It has been said that "they simply need better teaching." At the same time, there is an increasing evidence base that pedagogy that is based on the discipline of behaviour analysis offers the best prospect for individuals diagnosed with autism spectrum disorders. On the basis of this evidence, it is proposed that behaviour analysis should be applied more broadly to improve teaching for all children with intellectual or developmental disability.

Friendship at Any Cost: Parent Perspectives on Cyberbullying Children with Intellectual and Developmental Disabilities

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McHugh, Meaghan C.; Howard, Donna E.

2017-01-01

Bullying affects approximately 40% of individuals with intellectual and developmental disabilities (IDD). Cyberbullying, a type of bullying facilitated by electronic devices, may be particularly worrisome for parents of children with IDD as constant monitoring is difficult. In this study, ten parents of Special Olympics Maryland athletes completed…

Intellectual Disability and Developmental Risk: Promoting Intervention to Improve Child and Family Well-Being

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Crnic, Keith A.; Neece, Cameron L.; McIntyre, Laura Lee; Blacher, Jan; Baker, Bruce L.

2017-01-01

Initial intervention processes for children with intellectual disabilities (IDs) largely focused on direct efforts to impact core cognitive and academic deficits associated with the diagnosis. Recent research on risk processes in families of children with ID, however, has influenced new developmental system approaches to early intervention. Recent…

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

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Lauer, Emily; McCallion, Philip

2015-01-01

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

Participation Patterns of Preschool Children With Intellectual Developmental Disabilities.

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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.

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

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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

Use of Transition Resources by Primary Care Providers for Youth with Intellectual and Developmental Disabilities

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Dressler, Paul B.; Nguyen, Teresa K.; Moody, Eric J.; Friedman, Sandra L.; Pickler, Laura

2018-01-01

Youth with intellectual and developmental disabilities (IDD) often experience difficulties with successful transition from pediatric to adult healthcare. A consultative Transition Clinic for youth with IDD was piloted as a quality improvement project, and assessed the engagement of primary care providers (PCPs) for transition planning after…

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

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

2014-01-01

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

Examining Emerging Strategies to Prevent Sexual Violence: Tailoring to the Needs of Women with Intellectual and Developmental Disabilities

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Stevens, Bethany

2012-01-01

Sexual violence (SV) negatively impacts women with disabilities disproportionately, especially those with intellectual and/or developmental disabilities (IDD). The 2 populations are included in this article as there are overlaps in diagnostic criteria as well as similar risk factors associated with the experience of SV. Despite lacking…

Descriptors of Friendship between Secondary Students with and without Autism or Intellectual and Developmental Disability

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Rossetti, Zachary

2015-01-01

This article reports findings from an interpretevist, qualitative study exploring the connections and dynamics of friendship among three groups of secondary school-aged young adults. Each group included an individual with autism or intellectual and developmental disabilities who had extensive or pervasive support needs, and at least one high…

Self-Report Computer-Based Survey of Technology Use by People with Intellectual and Developmental Disabilities

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Tanis, Emily Shea; Palmer, Susan; Wehmeyer, Michael; Davies, Daniel K.; Stock, Steven E.; Lobb, Kathy; Bishop, Barbara

2012-01-01

Advancements of technologies in the areas of mobility, hearing and vision, communication, and daily living for people with intellectual and developmental disabilities has the potential to greatly enhance independence and self-determination. Previous research, however, suggests that there is a technological divide with regard to the use of such…

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

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

2018-01-01

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

Defining social inclusion of people with intellectual and developmental disabilities: an ecological model of social networks and community participation.

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Simplican, Stacy Clifford; Leader, Geraldine; Kosciulek, John; Leahy, Michael

2015-03-01

Social inclusion is an important goal for people with intellectual and developmental disabilities, families, service providers, and policymakers; however, the concept of social inclusion remains unclear, largely due to multiple and conflicting definitions in research and policy. We define social inclusion as the interaction between two major life domains: interpersonal relationships and community participation. We then propose an ecological model of social inclusion that includes individual, interpersonal, organizational, community, and socio-political factors. We identify four areas of research that our ecological model of social inclusion can move forward: (1) organizational implementation of social inclusion; (2) social inclusion of people with intellectual and developmental disabilities living with their families, (3) social inclusion of people along a broader spectrum of disability, and (4) the potential role of self-advocacy organizations in promoting social inclusion. Copyright © 2014. Published by Elsevier Ltd.

Developmental and Communication Disorders in Children with Intellectual Disability: The Place Early Intervention for Effective Inclusion

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Jacob, Udeme Samuel; Olisaemeka, Angela Nneka; Edozie, Isioma Sitamalife

2015-01-01

The paper attempts to discuss the place of intervention in the developmental and communication disorders of children with intellectual disability for the purpose of providing effective inclusion programme. The definition of early intervention was stated, areas affected by children communication disorder such as language comprehension, fluency,…

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

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

2013-01-01

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

Early Intervention in Children with Developmental Disabilities

Directory of Open Access Journals (Sweden)

Beena Johnson

2016-01-01

Full Text Available Developmental disabilities consist of conditions that delay or impair the physical, cognitive, and/or psychological development of children. If not intervened at the earliest, these disabilities will cause significant negative impact on multiple domains of functioning such as learning, language, self-care and capacity for independent living. Common developmental disabilities include autism spectrum disorders, intellectual disabilities, developmental delay and cerebral palsy. About one fourth of young children in developing countries are at risk for or have developmental delay or disabilities. Inadequate stimulation has significant negative impact on physical, socioemotional and cognitive development of children. Hence early scientific intervention programs are necessary in the management of children at risk for developmental delay.

Self-Directed Support: Impact of Hiring Practices on Adults with Intellectual and Developmental Disabilities and Families

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Heller, Tamar; Arnold, Catherine K.; van Heumen, Lieke; McBride, Elizabeth L.; Factor, Alan

2012-01-01

The study examined the differential experiences and outcomes for people with intellectual and developmental disabilities and their families receiving self-directed services based on the type of personal support worker hired (parents, siblings, other relatives, friends, and agency staff). The sample consisted of 372 participants in a self-directed…

Transition of an adolescent with mild intellectual and developmental disabilities to labour market

OpenAIRE

Bošnjak, Katarina

2016-01-01

One of the most important life decisions one takes as an adolescent is the choice of education and future career.This decision becomes even more difficult when the possibilities of further training are limited as they are in the case of the adolescents finishing school programmes which had been adapted to lower educational standards i.e. for persons with mild intellectual and developmental disabilities.We researched career counselling services in elementary and middle schools and found that...

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

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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.

The Effects of Psychopathology on the Pain Expression of Children and Youth with Intellectual and Developmental Disabilities

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Breau, Lynn M.; Camfield, Carol S.

2011-01-01

Behavioral pain assessment is possible for children and youth with intellectual and developmental disabilities (IDD). However, pain behavior is often misinterpreted as reflecting psychopathology. We examined whether psychopathology alters pain behavior. Caregivers of 123 children (56 girls ages 40 to 258 months) completed the Non-Communicating…

Are Cervical and Breast Cancer Screening Programmes Equitable? The Case of Women with Intellectual and Developmental Disabilities

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Cobigo, V.; Ouellette-Kuntz, H.; Balogh, R.; Leung, F.; Lin, E.; Lunsky, Y.

2013-01-01

Background: Effective cancer screening must be available for all eligible individuals without discrimination. Lower rates of cervical and breast cancer screening have been reported in certain groups compared with women from the general population, such as women with intellectual and developmental disabilities (IDD). Research on the factors…

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

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CARULLA, LUIS SALVADOR; REED, GEOFFREY M.; VAEZ-AZIZI, LEILA M.; COOPER, SALLY-ANN; LEAL, RAFAEL MARTINEZ; BERTELLI, MARCO; ADNAMS, COLLEEN; COORAY, SHERVA; DEB, SHOUMITRO; DIRANI, LEYLA AKOURY; GIRIMAJI, SATISH CHANDRA; KATZ, GREGORIO; KWOK, HENRY; LUCKASSON, RUTH; SIMEONSSON, RUNE; WALSH, CAROLYN; MUNIR, KEMIR; SAXENA, SHEKHAR

2011-01-01

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. PMID:21991267

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

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Friedman, Carli

2018-01-01

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

Identifying the Correlates and Barriers of Future Planning among Parents of Individuals with Intellectual and Developmental Disabilities

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Burke, Meghan; Arnold, Catherine; Owen, Aleksa

2018-01-01

Although individuals with intellectual and developmental disabilities (IDD) are living longer lives, fewer than half of parents of individuals with IDD conduct future planning. The correlates and barriers to future planning must be identified to develop targeted interventions to facilitate future planning. In this study, 388 parents of individuals…

Developing and Implementing a Postsecondary Education Program for Young Adults with Intellectual and Developmental Disabilities: Processes and Procedure

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Francis, Grace L.; Gordon, Sarah; Kliethermes, Andrew J.; Regester, April; Baldini, Deborah; Grant, Amber

2018-01-01

Postsecondary education programs (PSEs) for young adults with intellectual and developmental disabilities in colleges and universities expand opportunities for these young adults and result in positive outcomes, including employment and improved social networks. Although participating in postsecondary education results in numerous benefits for…

Identifying state resources and support programs on e-government websites for persons with intellectual and developmental disabilities.

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Fisher, Kathleen M; Peterson, Justin D; Albert, Jon D

2015-01-01

This descriptive cross-sectional study identified resources and programs that are available nationwide on the Internet to support individuals and families with intellectual and developmental disabilities (I/DD), with a focus on intellectual disability. This evaluation included easily identifiable information on specific resources and highlighted unique programs found in individual states that were linked from e-government websites. Researchers documented the ease of access and available information for all 50 states and the District of Columbia. A number of disparities and areas for improvement were recorded for states and I/DD websites. The researchers conclude that a number of additional health and support services will be needed to address the growing needs of this vulnerable population.

Effectiveness of a Caregiver Education Program on Providing Oral Care to Individuals with Intellectual and Developmental Disabilities

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Fickert, Nancy A.; Ross, Diana

2012-01-01

Caregivers who work in community living arrangements or intermediate care facilities are responsible for the oral hygiene of individuals with intellectual and developmental disabilities. Oral hygiene training programs do not exist in many organizations, despite concerns about the oral care of this population. The purpose of this study was to…

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

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Williamson, Heather J.; Perkins, Elizabeth A.

2014-01-01

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

"There Is No Black or White": Scientific Community Views on Ethics in Intellectual and Developmental Disability Research

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McDonald, Katherine; Patka, Mazna

2012-01-01

From an ethical standpoint, there are questions about the best ways to include adults with intellectual and developmental disabilities in research. Scholarship reflects divergent responses to these enduring questions and values that can be at odds with one another. To deepen our understanding of beliefs in the scientific community about how to…

Judicial Reliance on Parental IQ in Appellate-Level Child Welfare Cases Involving Parents with Intellectual and Developmental Disabilities

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Callow, Ella; Tahir, Munazza; Feldman, Maurice

2017-01-01

Background: Parents with intellectual and developmental disabilities (IDDs) are over-represented in child welfare cases. Although IQ "per se" is an invalid indicator of parenting abilities, this study examined the prevalence of judicial consideration of parental IQ test evidence in US appellate cases. Methods: The present authors…

Working memory functions in children with different degrees of intellectual disability.

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Schuchardt, K; Gebhardt, M; Mäehler, C

2010-04-01

In recent years, there has been increased research interest in the functioning of working memory in people with intellectual disabilities. Although studies have repeatedly found these individuals to have weak working memory skills, few investigations have distinguished between different degrees of intellectual disability. This study aims to help close this research gap and, in so doing, to examine whether the deficits observed reflect a developmental lag or a qualitative deviation from normal development. In a 5-group design, the working memory performance of a group of 15-year-olds with mild intellectual disability (IQ 50-69) was compared with that of two groups of children (aged 10 and 15 years) with borderline intellectual disability (IQ 70-84) and with that of two groups of children with average intellectual abilities (IQ 90-115) matched for mental and chronological age (aged 7 and 15 years). All children were administered a comprehensive battery of tests assessing the central executive, the visual-spatial sketchpad, and the phonological loop. The results showed deficits in all three components of working memory, and revealed that these deficits increased with the degree of intellectual disability. The findings indicate that, relative to their mental age peers, children with learning difficulties show structural abnormalities in the phonological store of the phonological loop, but developmental lags in the other two subsystems. Similar patterns of results emerged for both subgroups of children with intellectual disability, indicating that problems with phonological information processing seem to be one of the causes of cognitive impairment in individuals with intellectual disability.

Attention deficits in children with intellectual and developmental disabilities: evaluating the potential of computerised cognitive training

OpenAIRE

Kirk, Hannah

2017-01-01

Attention skills are strongly associated with academic attainment, social inclusion, peer relationships and mental health. Attention difficulties are commonly reported in children with intellectual and developmental disabilities (IDD), consequently increasing the already heightened risk of cognitive difficulties, behavioural problems and learning impairments. Despite acknowledgement of the core deficits in attention that characterise children with IDD, limited research has attempted to stre...

Later Life Impacts of Social Participation on Parents of Adult Offspring with and without Intellectual and Developmental Disabilities

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Olsen, Darren L.

2018-01-01

Social participation is an important resource for parents in old age, and may be particularly important for parents living with adult offspring with intellectual and developmental disabilities. To evaluate whether socializing with friends and family and participating in social organizations protects against depression in old age, this study…

Low Bone Mineral Density Risk Factors and Testing Patterns in Institutionalized Adults with Intellectual and Developmental Disabilities

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Hess, Mailee; Campagna, Elizabeth J.; Jensen, Kristin M.

2018-01-01

Background: Adults with intellectual or developmental disability (ID/DD) have multiple risks for low bone mineral density (BMD) without formal guidelines to guide testing. We sought to identify risk factors and patterns of BMD testing among institutionalized adults with ID/DD. Methods: We evaluated risk factors for low BMD (Z-/T-score < -1) and…

Critical Analysis of a Population Mental Health Strategy: Effects on Stigma for People with Intellectual and Developmental Disabilities

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Hamdani, Yani; Ary, Ayelet; Lunsky, Yona

2017-01-01

Introduction: Stigma is widely identified as an issue affecting the health and well-being of people with intellectual and developmental disabilities (IDD), and those with mental illnesses. To address this issue, a population mental health strategy, which includes a focus on reducing stigma and discrimination, was developed by the government of…

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

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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…

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

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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…

Predicting well-being longitudinally for mothers rearing offspring with intellectual and developmental disabilities.

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Grein, K A; Glidden, L M

2015-07-01

Well-being outcomes for parents of children with intellectual and developmental disabilities (IDD) may vary from positive to negative at different times and for different measures of well-being. Predicting and explaining this variability has been a major focus of family research for reasons that have both theoretical and applied implications. The current study used data from a 23-year longitudinal investigation of adoptive and birth parents of children with IDD to determine which early child, mother and family characteristics would predict the variance in maternal outcomes 20 years after their original measurement. Using hierarchical regression analyses, we tested the predictive power of variables measured when children were 7 years old on outcomes of maternal well-being when children were 26 years old. Outcome variables included maternal self-report measures of depression and well-being. Final models of well-being accounted for 20% to 34% of variance. For most outcomes, Family Accord and/or the personality variable of Neuroticism (emotional stability/instability) were significant predictors, but some variables demonstrated a different pattern. These findings confirm that (1) characteristics of the child, mother and family during childhood can predict outcomes of maternal well-being 20 years later; and (2) different predictor-outcome relationships can vary substantially, highlighting the importance of using multiple measures to gain a more comprehensive understanding of maternal well-being. These results have implications for refining prognoses for parents and for tailoring service delivery to individual child, parent and family characteristics. © 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

Short-term memory coding in children with intellectual disabilities.

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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.

Autonomy and Accountability: Teacher Perspectives on Evidence-Based Practice and Decision-Making for Students with Intellectual and Developmental Disabilities

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Greenway, Rosanne; McCollow, Meaghan; Hudson, Roxanne F.; Peck, Charles; Davis, Carol A.

2013-01-01

The purpose of this study was to examine teacher perspectives about evidence-based practices (EBP) and decision-making for students with intellectual and developmental disabilities. Given the current EBP movement, our study sought to understand practitioner definitions and perspectives on EBP and decision-making. Interview data from nine special…

Dental Care among Young Adults with Intellectual Disability

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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…

Effectiveness of a caregiver education program on providing oral care to individuals with intellectual and developmental disabilities.

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Fickert, Nancy A; Ross, Diana

2012-06-01

Caregivers who work in community living arrangements or intermediate care facilities are responsible for the oral hygiene of individuals with intellectual and developmental disabilities. Oral hygiene training programs do not exist in many organizations, despite concerns about the oral care of this population. The purpose of this study was to determine the effectiveness of a caregiver educational program. This study used a quasi-experimental one-group pretest/posttest design with repeated measures to describe the outcomes of an educational program. Program participants demonstrated oral hygiene skills on each other while being scored by a trained observer, after which they completed an oral hygiene compliance survey. After three months, a follow-up included the same posttest, demonstration of oral hygiene skills, and repeat of the compliance survey. Paired-sample t-tests of oral hygiene knowledge showed a statistically significant improvement from pretest to posttest and from pretest to three-month posttest. Oral hygiene skills and compliance improved. Results demonstrate evidence that caregiver education improves knowledge, skill, and compliance in oral hygiene. Further studies are required to demonstrate the value of providing oral hygiene education and training for caregivers of individuals with intellectual and developmental disabilities.

The Perceptions of Professionals Toward Siblings of Individuals With Intellectual and Developmental Disabilities.

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Burke, Meghan M; Lee, Chung Eun; Arnold, Catherine K; Owen, Aleksa

2017-04-01

Adult siblings of individuals with intellectual and developmental disabilities (IDD) report struggling to navigate the adult disability service delivery system and collaborate with professionals. To date, though, it is unclear how professionals encourage sibling involvement and, accordingly, the facilitators and challenges in working with siblings. For this study, 290 professionals participated in a national web-based survey; participants answered three open-ended questions about ways to involve siblings, positive experiences with siblings, and challenges in working with siblings. Professionals reported person-level and systems-level supports to encourage sibling involvement. Also, professionals reported enjoying working with cohesive families of individuals with IDD and witnessing the benefits that siblings bring to their brothers and sisters with IDD. Challenges in working with siblings included: lack of sibling involvement, systemic barriers, and caregiving burden. Implications for future research and practice are discussed.

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

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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.

Characteristics of People with Intellectual Disabilities in a Secure U.S. Forensic Hospital

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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…

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

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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.

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

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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

Social anxiety and parental overprotection in young adults with and without intellectual disabilities.

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Hemm, Cahley; Dagnan, Dave; Meyer, Thomas D

2018-05-01

Developmental literature highlights peer relationships and parental overprotection as factors implicated in the development of social anxiety. These factors are highly prevalent in the lives of people with intellectual disabilities; however research has not examined whether these factors are associated with social anxiety for this population. Twenty-one individuals without intellectual disabilities and 21 individuals with intellectual disabilities (aged 16-24 years) completed the Social Anxiety Scale for Adolescents with follow-up questions, the Glasgow Anxiety Scale-Intellectual disabilities and the parental overprotection subscale of the Parental Bonding Instrument with follow-up questions. Aspects of general and social anxiety were significantly greater in the intellectual disabilities group. There were no significant differences in parental overprotection between groups, however, qualitative analyses revealed differences in experiences of social anxiety and parental overprotection. Further research into factors associated with social anxiety in people with intellectual disabilities may inform adaptations to therapies and early intervention. © 2017 John Wiley & Sons Ltd.

What is an Intellectual Disability?

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... 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 ...

The Adaptation of a School-Based Health Promotion Programme for Youth with Intellectual and Developmental Disabilities: A Community-Engaged Research Process

Science.gov (United States)

Hubbard, Kristie L.; Bandini, Linda G.; Folta, Sara C.; Wansink, Brian; Must, Aviva

2014-01-01

Background: Evidenced-based health promotion programmes for youth with intellectual and developmental disabilities (I/DD) are notably absent. Barriers include a lack of understanding of how to adapt existing evidence-based programmes to their needs, maximize inclusion and support mutual goals of health and autonomy. Methods: We undertook a…

Adolescent Siblings of Individuals with and without Intellectual and Developmental Disabilities: Self-Reported Empathy and Feelings about Their Brothers and Sisters

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Shivers, Carolyn M.; Dykens, Elisabeth M.

2017-01-01

Siblings of brothers or sisters with intellectual and developmental disabilities (IDD) are important but understudied family members. As many previous studies have relied on parent report of sibling outcomes, the use of sibling self-report is an important addition to the research. This study assessed the feelings of adolescent siblings toward…

Attention-Deficit/Hyperactivity Disorder among Children with and without Intellectual Disability: An Examination across Time

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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…

Colonoscopy and Colorectal Cancer Screening in Adults with Intellectual and Developmental Disabilities: Review of a Series of Cases and Recommendations for Examination

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Fischer, Leonard S.; Becker, Andrew; Paraguya, Maria; Chukwu, Cecilia

2012-01-01

Adults with intellectual and developmental disabilities (IDD) frequently have comorbidities that might interfere with colonoscopy preparation and examination. In this article, the authors review their experience with colonoscopies performed from 2002 through 2010 on adults with IDD at a state institution to evaluate quality and safety of…

Issues in the Medication Management Process in People Who Have Intellectual and Developmental Disabilities: A Qualitative Study of the Caregivers' Perspective

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Erickson, Steven R.; Salgado, Teresa M.; Tian, Xi

2016-01-01

People who have intellectual and developmental disabilities (IDD) often rely on caregivers to assist in the medication management process. The aim of this study was to learn from caregivers, who are either family or support staff, what major issues arise throughout the process of managing medication and how these might be addressed. Problems…

Parent training support for intellectually disabled parents.

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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

Comparative study on attitudes and psychological problems of mothers towards their children with developmental disability.

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Shobana, M; Saravanan, C

2014-03-01

Parents' positive attitudes and psychological wellbeing play an important role in the development of the children with developmental disability. This study aimed to measure the prevalence of psychological problems among mothers of children with autism disorder, intellectual disability, and Down syndrome. The second aim was to assess the differences in mothers' attitudes and psychological problems among their children with intellectual disability, autism disorder, and Down syndrome. The third aim was to identify whether negative attitude was a predictor of psychological problems in these mothers. In this study, 112 mothers of children having mild and moderate levels of autism disorder, Down syndrome, and intellectual disability were assessed using the Parental Attitude Scale and General Health Questionnaire-28. Overall, mothers of children with intellectual disability were found to have the most negative attitude towards their child. Mothers of children with autism disorder exhibited higher scores on somatic symptoms, anxiety, and social dysfunction when compared with their counterparts with Down syndrome and intellectual disability. Negative attitude was a significant predictor of psychological problems. Parental attitudes and psychological problems would vary among mothers of children with different types of developmental disability.

Nutrition Education and Support Program for Community-Dwelling Adults with Intellectual Disabilities

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Humphries, Kathleen; Traci, Meg Ann; Seekins, Tom

2008-01-01

To test the efficacy, acceptability, and appropriateness of a nutrition education and support program, 4 community-based group homes for adults with intellectual or developmental disabilities participated in a pilot intervention with extended baseline period and pre--post-test design. Adults (N = 32) with intellectual or developmental…

Hollywood takes on intellectual/ developmental disability: cinematic representations of occupational participation.

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Renwick, Rebecca; Schormans, Ann Fudge; Shore, Deborah

2014-01-01

Adults with intellectual/developmental disability (IDD), and their occupational participation, are vastly under-represented in Hollywood films. Because films often provide individuals' only experience of people with IDD, cinematic representations can influence audience perceptions. Thus, films can help inform public perceptions about desired and appropriate occupational participation for people with IDD, potentially impacting their access to meaningful occupational participation and achievement of occupational potential. Accordingly, this research examined occupational portrayals of adults with IDD in contemporary Hollywood films. Occupational portrayals, as defined here, refer to representations of the dynamic process of the person participating in occupation(s) in a context. Grounded theory methods guided coding and analysis of qualitative data collected from eight contemporary films using an occupation-focused tool. Two major, striking themes emerging from the qualitative analysis--infantilization and simplification of participation in complex occupations (with three associated sub-themes)--are discussed. Implications of the findings and future research directions are considered.

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.

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

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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.

Food Insecurity among Young Adults with Intellectual and Developmental Disabilities in the United States: Evidence from the National Health Interview Survey

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Brucker, Debra L.; Nord, Derek

2016-01-01

People with intellectual or developmental disabilities (IDD) face higher levels of poverty than others, which can lead to concerns regarding areas of well-being, such as food security. Young adults with IDD who are, in many cases, transitioning from the system of educational, health care, and income supports of their youth into the adult world may…

A review of suicidality in persons with intellectual disability.

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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.

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

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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

pivotal opportunity for the identification of intellectual disability and for initiating transitional linkages to health and intellectual disability-specific community services for this marginalised population. © 2017 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

Symbol Labelling Improves Advantageous Decision-Making on the Iowa Gambling Task in People with Intellectual Disabilities

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Dymond, Simon; Bailey, Rebecca; Willner, Paul; Parry, Rhonwen

2010-01-01

Individuals with intellectual and developmental disabilities often have difficulties foregoing short-term loss for long-term gain. The Iowa Gambling Task (IGT) has been extensively adopted as a laboratory measure of this ability. In the present study, we undertook the first investigation with people with intellectual disabilities using a…

Facilitating employment opportunities for adults with intellectual and developmental disability through parents and social networks.

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Petner-Arrey, Jami; Howell-Moneta, Angela; Lysaght, Rosemary

2015-07-01

People with intellectual and developmental disability (IDD) have historically had high unemployment and underemployment rates and continue to face significant barriers to attaining and sustaining employment. The purpose of this research, conducted in Ontario, Canada was to better understand the experiences of people with IDD gaining and keeping productivity roles. We used qualitative semi-structured interviews with 74 participants with IDD and their families or caregivers as proxies regarding the employment of a person with IDD. We selected a sample of persons from three different geographic regions in Ontario, Canada, and analyzed data through coding methods consistent with a grounded theory approach. Our results demonstrate the importance of parents and other members of social and family networks relative to connecting with work options and sustaining work over time, especially through continued advocacy and investment. Parents helped individuals with IDD negotiate the right job fit, though they often encountered challenges as a result of their efforts. Practitioners must understand how to support parents to be effective advocates for their adult children with IDD, assist them to develop and maintain their social networks and help them to avoid caregiver burnout. Implications for Rehabilitation People with intellectual and developmental disability (IDD) face numerous challenges in indentifying work options and overcoming barriers to employment. Parents and other non-paid support members of social networks can be instrumental in ensuring that persons with IDD not only secure initial job placements, but also sustain employment and employment alternatives. Professionals that support persons with IDD can direct their efforts to helping persons with IDD develop strong social connections, as well as helping parents to prevent burnout.

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

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

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

2017-10-01

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

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...

Psychopathology in Young People With Intellectual Disability

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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

Known for My Strengths: Positive Traits of Transition-Age Youth With Intellectual Disability and/or Autism

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Carter, Erik W.; Boehm, Thomas L.; Biggs, Elizabeth E.; Annandale, Naomi H.; Taylor, Courtney E.; Loock, Aimee K.; Liu, Rosemary Y.

2015-01-01

Can young people with intellectual and developmental disabilities be known for their strengths? This mixed-method study explored the strengths of 427 youth and young adults with intellectual disability and/or autism (ages 13-21) from the vantage point of their parents. Using the Assessment Scale for Positive Character Traits-Developmental…

Role of nucleosome remodeling in neurodevelopmental and intellectual disability disorders

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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.

Personalization, Self-Advocacy and Inclusion: An Evaluation of Parent-Initiated Supported Living Schemes for People with Intellectual and Developmental Disabilities in the Netherlands

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Reindl, Marie-Sol; Waltz, Mitzi; Schippers, Alice

2016-01-01

This study focused on parent-initiated supported living schemes in the South of the Netherlands and the ability of these living schemes to enhance participation, choice, autonomy and self-advocacy for people with intellectual or developmental disabilities through personalized planning, support and care. Based on in-depth interviews with tenants,…

Reduce, Manage or Cope: A Review of Strategies for Training School Staff to Address Challenging Behaviours Displayed by Students with Intellectual/Developmental Disabilities

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Stoesz, Brenda M.; Shooshtari, Shahin; Montgomery, Janine; Martin, Toby; Heinrichs, Dustin J.; Douglas, Joyce

2016-01-01

Members of a knowledge translation and exchange (KTE) research team assessed the training needs of the teaching staff at a school for individuals with intellectual/developmental disabilities (IDD). In response to this need, KTE researchers retrieved peer-reviewed articles for training staff working with individuals with IDD who exhibit challenging…

Fostering Friendships: Supporting Relationships among Youth with and without Developmental Disabilities

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Carter, Erik W.; Asmus, Jennifer; Moss, Colleen K.

2013-01-01

Friendships are important not only to youth development but also to the growth and expansion of social networks. Although there has long been acknowledgment of this importance for youth, such relationships can be especially elusive for transition-age students with autism, intellectual disability, and other developmental disabilities. This article…

The first year: the support needs of parents caring for a child with an intellectual disability.

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Douglas, Tracy; Redley, Bernice; Ottmann, Goetz

2016-11-01

To describe the support needs of parents caring for a child with an intellectual disability in the first year of life. Parents of children with intellectual disabilities face significant challenges during the first year of their child's life which is an important developmental period not previously addressed in the literature. The provision of support by health professionals, particularly nurses and midwives, during this crucial period can impact on parental well-being and on the health and developmental outcomes of their children. However, parents often feel unsupported. The study used a qualitative descriptive methodology. Semi-structured interviews were conducted with parents of eleven children with an intellectual disability in Victoria, Australia, during 2014. Interviews were digitally recorded, transcribed verbatim and analysed using thematic data analysis. Three key areas of support need were identified to assist parents to provide effective care for their child with an intellectual disability in the first year of life: (1) emotional support as parents adjusted to their role of caring for a child with an intellectual disability; (2) information support as they embarked on a quest for knowledge; and (3) support to facilitate their connection to peer networks. The findings highlighted inconsistent provision of support for parents. This study informs health professionals about how to provide holistic, timely support to parents of children with intellectual disabilities in the first year of life. There is an urgent need to review how nurses and midwives can provide relevant support that is responsive to parents' needs. © 2016 John Wiley & Sons Ltd.

Physical Punishment, Mental Health and Sense of Coherence Among Parents of Children with Intellectual Disability in Japan.

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Kimura, Miyako; Yamazaki, Yoshihiko

2016-09-01

Although sense of coherence (SOC) moderates parental stress, the relationship between SOC, parental mental health and physical punishment of children with intellectual disabilities remains uncertain. The present authors describe parental physical punishment towards children with intellectual disabilities and investigate its related demographic characteristics, SOC and parental mental health. With the cooperation of Tokyo's 10 special needs schools, the present authors obtained 648 questionnaire responses from parents of children with intellectual disabilities. Of the parents, 69.7% reported having physically punished their children with intellectual disabilities. This was positively associated with parents' younger age, poorer mental health, lower SOC, children's younger age, birth order (firstborns) and disability type (autism/pervasive developmental disorder). This is the first study supporting the relationship between SOC, mental health and physical punishment use among parents of children with intellectual disabilities. It may assist the development of strategies to prevent physical abuse of children with disabilities. © 2015 John Wiley & Sons Ltd.

Measurement Properties of the Non-Communicating Adult Pain Checklist (NCAPC): A Pain Scale for Adults with Intellectual and Developmental Disabilities, Scored in a Clinical Setting

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Lotan, M.; Moe-Nilssen, R.; Ljunggren, A. E.; Strand, L. I.

2010-01-01

The 18 items' Non-Communicating Adult Pain Checklist (NCAPC) has been developed from the 27 items Non-Communicating Children Pain Checklist to better capture pain behavior of adults with Intellectual and Developmental Disabilities (IDD). As part of the NCAPC's measurement properties, internal consistency, reliability and sensitivity to pain have…

Advances in understanding – genetic basis of intellectual disability [version 1; referees: 2 approved

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Pietro Chiurazzi

2016-04-01

Full Text Available Intellectual disability is the most common developmental disorder characterized by a congenital limitation in intellectual functioning and adaptive behavior. It often co-occurs with other mental conditions like attention deficit/hyperactivity disorder and autism spectrum disorder, and can be part of a malformation syndrome that affects other organs. Considering the heterogeneity of its causes (environmental and genetic, its frequency worldwide varies greatly. This review focuses on known genes underlying (syndromic and non-syndromic intellectual disability, it provides a succinct analysis of their Gene Ontology, and it suggests the use of transcriptional profiling for the prioritization of candidate genes.

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

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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…

Characteristics of international websites with information on developmental disabilities.

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Reichow, Brian; Gelbar, Nicholas W; Mouradjian, Keri; Shefcyk, Allison; Smith, Isaac C

2014-10-01

The Internet often serves as a primary resource for individuals seeking health-related information, and a large and growing number of websites contain information related to developmental disabilities. This paper presents the results of an international evaluation of the characteristics and content of the top 10 ranked results (i.e., not including sponsored results - pay-per-click) returned when one of five terms related to developmental disabilities (i.e., ADHD, autism, down syndrome, learning disability, intellectual disability) was entered into one of six country specific Google online search engines (i.e., Australia (https://www.google.com.au), Canada (https://www.google.ca), Ireland (https://www.google.ie), New Zealand (https://www.google.co.nz), the United Kingdom (https://www.google.co.uk), and the United States (https://www.google.com)) on October 22, 2013. Collectively, we found that international consumers of websites related to developmental disabilities will encounter different websites with differing content and terminology, and should be critical consumers to ensure they locate the information they are seeking. Copyright © 2014 Elsevier Ltd. All rights reserved.

A Review of Research on Direct-Care Staff Data Collection Regarding the Severity and Function of Challenging Behavior in Individuals with Intellectual and Developmental Disabilities

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Madsen, Emily K.; Peck, Janelle A.; Valdovinos, Maria G.

2016-01-01

In working with individuals with intellectual and developmental disabilities (IDDs), it is direct care staff who are often required to collect data on individuals' behavior which is used as the basis for implementation of empirically based approaches for intervention and treatment. Due to limited resources, indirect and descriptive measures of…

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

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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.

The interrelationships between motor, cognitive, and language development in children with and without intellectual and developmental disabilities.

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Houwen, Suzanne; Visser, Linda; van der Putten, Annette; Vlaskamp, Carla

2016-01-01

It is generally agreed that cognitive and language development are dependent on the emergence of motor skills. As the literature on this issue concerning children with developmental disabilities is scarce, we examined the interrelationships between motor, cognitive, and language development in children with intellectual and developmental disabilities (IDD) and compared them to those in children without IDD. In addition, we investigated whether these relationships differ between children with different levels of cognitive delay. Seventy-seven children with IDD (calendar age between 1;0 and 9;10 years; mean developmental age: 1;8 years) and 130 typically developing children (calendar age between 0;3 and 3;6 years; mean developmental age: 1;10 years) were tested with the Dutch Bayley Scales of Infant and Toddler Development, Third Edition, which assesses development across three domains using five subscales: fine motor development, gross motor development (motor), cognition (cognitive), receptive communication, and expressive communication (language). Results showed that correlations between the motor, cognitive, and language domains were strong, namely .61 to .94 in children with IDD and weak to strong, namely .24 to .56 in children without IDD. Furthermore, the correlations showed a tendency to increase with the severity of IDD. It can be concluded that both fine and gross motor development are more strongly associated with cognition, and consequently language, in children with IDD than in children without IDD. The findings of this study emphasize the importance of early interventions that boost both motor and cognitive development, and suggest that such interventions will also enhance language development. Copyright © 2016 Elsevier Ltd. All rights reserved.

Stability of cognitive performance in children with mild intellectual disability.

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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.

The sexuality of young women with intellectual and developmental disabilities: A neglected focus in the American foster care system.

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Ballan, Michelle S; Freyer, Molly Burke

2017-07-01

Youths with intellectual and developmental disabilities (ID/DD) are overrepresented in the American foster care system and experience heightened rates of pregnancy compared to their nondisabled peers. Yet limited information is known about sexually active or pregnant young women with ID/DD in foster care. Consequently, important healthcare needs of this population are not adequately addressed. This article explores sexuality education and sexual healthcare for female adolescents in foster care with ID/DD and recommends practice guidelines to support and prepare their emergent sexual development. Copyright © 2017 Elsevier Inc. All rights reserved.

A quantitative review of overjustification effects in persons with intellectual and developmental disabilities.

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Levy, Allison; DeLeon, Iser G; Martinez, Catherine K; Fernandez, Nathalie; Gage, Nicholas A; Sigurdsson, Sigurdur Óli; Frank-Crawford, Michelle A

2017-04-01

The overjustification hypothesis suggests that extrinsic rewards undermine intrinsic motivation. Extrinsic rewards are common in strengthening behavior in persons with intellectual and developmental disabilities; we examined overjustification effects in this context. A literature search yielded 65 data sets permitting comparison of responding during an initial no-reinforcement phase to a subsequent no-reinforcement phase, separated by a reinforcement phase. We used effect sizes to compare response levels in these two no-reinforcement phases. Overall, the mean effect size did not differ from zero; levels in the second no-reinforcement phase were equally likely to be higher or lower than in the first. However, in contrast to the overjustification hypothesis, levels were higher in the second no-reinforcement phase when comparing the single no-reinforcement sessions immediately before and after reinforcement. Outcomes consistent with the overjustification hypothesis were somewhat more likely when the target behavior occurred at relatively higher levels prior to reinforcement. © 2016 Society for the Experimental Analysis of Behavior.

Anesthesia for intellectually disabled

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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.

Patterns of Time Processing Ability in Children with and without Developmental Disabilities

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Janeslatt, Gunnel; Granlund, Mats; Kottorp, Anders; Almqvist, Lena

2010-01-01

Background: Children with developmental disabilities, e.g. intellectual disability or autism, are reported to have problems in time perception, time orientation or time management, i.e. in time-processing ability (TPA). The aim was to investigate whether the problems described are diagnosis specific or reflect differences in age or in level of…

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.

Working memory development in children with mild to borderline intellectual disabilities

NARCIS (Netherlands)

Van der Molen, M. J.; Henry, L. A.; Van Luit, J. E H

2014-01-01

Background: The purpose of the current cross-sectional study was to examine the developmental progression in working memory (WM) between the ages of 9 and 16 years in a large sample of children with mild to borderline intellectual disabilities (MBID). Baddeley's influential WM model was used as a

Risk factors related to antisocial behavior in teenagers with intellectual disabilities

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Pavel A. Kislyakov

2017-06-01

Full Text Available Background. Throughout the ontogenic development period and life journey, everyone faces numerous threats and challenges. Certain of these challenges are beyond the individual’s control and are caused by social and environmental factors, but others, conversely, are provoked by the individual’s own lifestyle and mental and/or physical health condition. This paper considers how the social adaptation of children with intellectual developmental disorders affects the development of various forms of socially dangerous behavior. Objective. The primary goal of the study described in the article is to identify and analyze the potential risk factors related to antisocial behavior among teenagers with intellectual disabilities (mental retardation based on a survey of teachers in special (correctional schools. The methodological basis of our research uses the provisions of Lev Vygotsky’s theory of socialization among children with intellectual disabilities. This article shows the importance of implementing Lev Vygotsky’s doctrine of correction and compensation of disturbed psychological, emotional and social development of schoolchildren with intellectual disabilities. Design. To achieve this purpose, the following methods were used: interviews, questionnaires, and factor analysis. In the first stage of the study, interviews were conducted with teachers working in special (correctional schools (teachers, child and youth counselors, school psychologists, developmental pediatricians — of 108 teachers from 10 schools. Analysis of the interviews revealed a list of risk factors related to antisocial behavior among teenagers with intellectual disabilities (only 35 points. The collected data formed the basis for a questionnaire, “Social Safety for Children with Intellectual Disabilities”. In the second stage, 83 teachers working in the special (correctional schools were surveyed. The survey was completed by teachers of children (12-13 years old who

The Usefulness of the DBC-ASA as a Screening Instrument for Autism in Children with Intellectual Disabilities: A Pilot Study

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Deb, Shoumitro; Dhaliwal, Akal-Joat; Roy, Meera

2009-01-01

Aims: To explore the validity of Developmental Behaviour Checklist-Autism Screening Algorithm (DBC-ASA) as a screening instrument for autism among children with intellectual disabilities. Method: Data were collected from the case notes of 109 children with intellectual disabilities attending a specialist clinic in the UK. Results: The mean score…

Internet and people with intellectual disability: an approach to caregivers’ concerns, prevention strategies and training needs

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Esther Chiner

2017-07-01

Full Text Available The aim of this study was to explore caregivers’ views about the risks of the Internet for people with intellectual disabilities and their preparation and ability to use prevention strategies to address them. The participants (20 family members and 24 staff members belonged to a non-profit association working with people with developmental and intellectual disabilities and were asked to respond to a questionnaire about Internet safety and risks. Findings show some concerns from caregivers with regard to the use of the Internet by people with intellectual disabilities and suggest that this group is more vulnerable to online risks. Participants use different kinds of strategies to prevent the risks but they have not received any formal training. They think that this training should come from the Administration and other organisations. Some differences were found between family and staff members’ responses. Training programmes for all the groups involved in this process (i.e. people with intellectual disabilities, staff and family members should be designed, implemented and assessed to promote the inclusion of people with intellectual disabilities in the digital arena.

[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.

Relations among motor, social, and cognitive skills in pre-kindergarten children with developmental disabilities.

Science.gov (United States)

Kim, Helyn; Carlson, Abby G; Curby, Timothy W; Winsler, Adam

2016-01-01

Despite the comorbidity between motor difficulties and certain disabilities, limited research has examined links between early motor, cognitive, and social skills in preschool-aged children with developmental disabilities. The present study examined the relative contributions of gross motor and fine motor skills to the prediction of improvements in children's cognitive and social skills among 2,027 pre-kindergarten children with developmental disabilities, including specific learning disorder, speech/language impairment, intellectual disability, and autism spectrum disorder. Results indicated that for pre-kindergarten children with developmental disabilities, fine motor skills, but not gross motor skills, were predictive of improvements in cognitive and social skills, even after controlling for demographic information and initial skill levels. Moreover, depending on the type of developmental disability, the pattern of prediction of gross motor and fine motor skills to improvements in children's cognitive and social skills differed. Implications are discussed. Copyright © 2016 Elsevier Ltd. All rights reserved.

Searching Nearest Potential of Children with Intellectual Disability – Dynamic Assessment

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Kulesza Ewa Maria

2015-08-01

Full Text Available The article discussed the issue of the diagnosis with the use of task-support-task procedure. A theoretical model of diagnosis based on the concepts by L. S. Vygotski, R. Case, and A. Bandura was described and developed. The model was tested on a group of non-disabled preschool children, and children with mild and moderate intellectual disability who were paired up accordingly to their mental age. Each pair was given a set of developmentally adapted tasks. The tool (44 tasks was reliable and valid. The task-support-task procedure significantly affected the level of the task performance in all the children and allowed to define the scope of potential abilities, especially in the children with mild and moderate intellectual disabilities. Most of the task they did fell into the zone of proximal development.

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

Science.gov (United States)

de Lange, Iris M; Helbig, Katherine L; Weckhuysen, Sarah; Møller, Rikke S; Velinov, Milen; Dolzhanskaya, Natalia; Marsh, Eric; Helbig, Ingo; Devinsky, Orrin; Tang, Sha; Mefford, Heather C; Myers, Candace T; van Paesschen, Wim; Striano, Pasquale; van Gassen, Koen; van Kempen, Marjan; de Kovel, Carolien G F; Piard, Juliette; Minassian, Berge A; Nezarati, Marjan M; Pessoa, André; Jacquette, Aurelia; Maher, Bridget; Balestrini, Simona; Sisodiya, Sanjay; Warde, Marie Therese Abi; De St Martin, Anne; Chelly, Jamel; van ‘t Slot, Ruben; Van Maldergem, Lionel; Brilstra, Eva H; Koeleman, Bobby P C

2016-01-01

Background Mutations in the KIAA2022 gene have been reported in male patients with X-linked intellectual disability, and related female carriers were unaffected. Here, we report 14 female patients who carry a heterozygous de novo KIAA2022 mutation and share a phenotype characterised by intellectual disability and epilepsy. Methods Reported females were selected for genetic testing because of substantial developmental problems and/or epilepsy. X-inactivation and expression studies were performed when possible. Results All mutations were predicted to result in a frameshift or premature stop. 12 out of 14 patients had intractable epilepsy with myoclonic and/or absence seizures, and generalised in 11. Thirteen patients had mild to severe intellectual disability. This female phenotype partially overlaps with the reported male phenotype which consists of more severe intellectual disability, microcephaly, growth retardation, facial dysmorphisms and, less frequently, epilepsy. One female patient showed completely skewed X-inactivation, complete absence of RNA expression in blood and a phenotype similar to male patients. In the six other tested patients, X-inactivation was random, confirmed by a non-significant twofold to threefold decrease of RNA expression in blood, consistent with the expected mosaicism between cells expressing mutant or normal KIAA2022 alleles. Conclusions Heterozygous loss of KIAA2022 expression is a cause of intellectual disability in females. Compared with its hemizygous male counterpart, the heterozygous female disease has less severe intellectual disability, but is more often associated with a severe and intractable myoclonic epilepsy. PMID:27358180

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

The state of the science of employment and economic self-sufficiency for people with intellectual and developmental disabilities.

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Nord, Derek; Luecking, Richard; Mank, David; Kiernan, William; Wray, Christina

2013-10-01

Employment, career advancement, and financial independence are highly valued in the United States. As expectations, they are often instilled at a young age and incentivized throughout adulthood. Despite their importance, employment and economic sufficiency continue to be out of reach for most people with intellectual and developmental disabilities (IDD). Over the last quarter century, extensive research and effort has been committed to understanding and improving these phenomena. This paper summarizes this employment research base by reviewing the literature on the effectiveness of the current employment support system, employment-specific interventions, and the economics and cost benefits of employment for people with IDD. Recommendations and directions for future research are also presented.

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...

Key concepts and principles that explain changes in the provision of supports for intellectual and developmental disabilities in Spain

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Miguel Ángel VERDUGO ALONSO

2018-03-01

Full Text Available The study focuses on the analysis of the central concepts that are influencing changes and transformations in the role of professionals and in the work done by organizations supporting people with intellectual and developmental disabilities in Spain. This includes the need for a global and systematic approach to the needs of the person, highlighting the importance of evidence to support professional, organizations and administrations decisions, and the influence that different systems (individual, family, organizational and social have in the life of the person. Finally, some conclusions are presented about the current moment and the immediate future.

Self-Determination of Young Children with Intellectual Disability: Understanding Parents' Perspectives

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Arellano, Araceli; Peralta, Feli

2013-01-01

Self-determination is considered to be a basic human right which, to develop, demands contextual opportunities as well as individual competencies. For people with intellectual and developmental disabilities, the family is the natural support environment in the task of increasing control over their own lives. There is little, however, that has been…

The Developmental Trajectory of Self-Injurious Behaviours in Individuals with Prader Willi Syndrome, Autism Spectrum Disorder and Intellectual Disability

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Lauren J. Rice

2016-02-01

Full Text Available In the present study we examined the nature and developmental trajectory of self-injurious behaviour in Prader Willi syndrome (PWS and autism spectrum disorder (ASD. The development of interventions is greatly aided by understanding gene to behaviour pathways, and this requires an accurate description of the behaviour phenotype, that is, which types and natural history of self-injurious behaviour are more common in PWS and ASD and which are shared with other forms of developmental disability. Self-injury displayed by individuals with PWS and individuals with ASD was compared with that reported in a group of individuals with intellectual disability due to mixed aetiology (ID group. Three self-injurious behaviours (head banging, skin-picking and hitting and/or biting self were measured on five occasions over 18 years using the Developmental Behaviour Checklist (DBC a well-validated caregiver report measure. Rates of skin picking were higher in individuals with PWS and hitting and/or biting self was higher in individuals with ASD compared to the ID group. Rates of head banging were similar across the three groups. Over time, skin-picking and head banging increased with age for individuals with ASD and hitting and/or biting self increased for the PWS group. In the PWS and mixed ID groups head banging decreased with age. These findings suggest that the typology and developmental trajectories of self-injurious behaviours differ between those with PWS and ASD.

Health promotion in families who have children with intellectual and developmental disabilities

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Emira Švraka

2011-04-01

Full Text Available Intellectual disability is the state of stopped or incomplete mental development which is featured by the impairment of abilities occurring at the development age and contributes to general level of intelligence, such as speech, cognitive, motor and social abilities. Disability can occur together or separately from other mental or physical disorders. 290 million people worldwide are estimated to have disabilities. Health is a core element in quality of life, but poverty, marginalization, limited access to primary health care, and lack of health promotion knowledge compromise health. Based on a research results in all nine areas of the family life quality (health, nancial status, family relations, support of other, support of services, influence of values, career, leisure and recreation, and community interaction community could influence with the permanent preventive measures on 6 concepts of family life quality: importance, possibility, initiative, achievement, stability and satisfaction. The research could be of great help for the development of comprehensive strategies for improvement of quality of life for families that have one or more members with intellectual disability. From inclusion we expect approach to individual and his/her family by the society, to take into account all their diversities, preservation and improvement of their personal physical and mental health, for optimal possible functioning, at all personal and social levels.

Extracurricular activities and the development of social skills in children with intellectual and specific learning disabilities.

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Brooks, B A; Floyd, F; Robins, D L; Chan, W Y

2015-07-01

Children with intellectual disability and specific learning disabilities often lack age-appropriate social skills, which disrupts their social functioning. Because of the limited effectiveness of classroom mainstreaming and social skills training for these children, it is important to explore alternative opportunities for social skill acquisition. Participation in social activities is positively related to children's social adjustment, but little is known about the benefits of activity participation for children with intellectual and specific learning disabilities. This study investigated the association between frequency and type of social activity participation and the social competence of 8-11-year-old children with intellectual disability (n = 40) and specific learning disabilities (n = 53), in comparison with typically developing peers (n = 24). More time involved in unstructured activities, but not structured activities, was associated with higher levels of social competence for all children. This association was strongest for children with intellectual disability, suggesting that participation in unstructured social activities was most beneficial for these children. Future research on the quality of involvement is necessary to further understand specific aspects of unstructured activities that might facilitate social development. © 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

De novo mutations in the genome organizer CTCF cause intellectual disability

DEFF Research Database (Denmark)

Gregor, Anne; Oti, Martin; Kouwenhoven, Evelyn N

2013-01-01

An increasing number of genes involved in chromatin structure and epigenetic regulation has been implicated in a variety of developmental disorders, often including intellectual disability. By trio exome sequencing and subsequent mutational screening we now identified two de novo frameshift...... mutations and one de novo missense mutation in CTCF in individuals with intellectual disability, microcephaly, and growth retardation. Furthermore, an individual with a larger deletion including CTCF was identified. CTCF (CCCTC-binding factor) is one of the most important chromatin organizers in vertebrates...... and is involved in various chromatin regulation processes such as higher order of chromatin organization, enhancer function, and maintenance of three-dimensional chromatin structure. Transcriptome analyses in all three individuals with point mutations revealed deregulation of genes involved in signal transduction...

Working Memory Development in Children with Mild to Borderline Intellectual Disabilities

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Van der Molen, M. J.; Henry, L. A.; Van Luit, J. E. H.

2014-01-01

Background: The purpose of the current cross-sectional study was to examine the developmental progression in working memory (WM) between the ages of 9 and 16 years in a large sample of children with mild to borderline intellectual disabilities (MBID). Baddeley's influential WM model was used as a theoretical framework. Furthermore, the…

Adolescents with intellectual disability and suicidal behavior.

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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.

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES: STRESS AND SUPPORT

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Natasha CHICHEVSKA JOVANOVA

2013-03-01

Full Text Available Parents’ reactions, in the moment when they find out that their child is with developmental disabilities, are absolutely individual. A lot of parents need months, while some of them need years to face the fact that their child is with developmental disabilities. The state and the crises that arise are very hard to be prevented, however they could be overcomed by a good professional help and support. The aim of this research is to examine the stress level that the parents of these children experience as well as the support that they receive by the family and the local community. Thirty one parents of children with intellectual disabilities, cerebral paralysis and visual impairment have been inquired. The questionnaire referred to the way of communication between professionals and parents, the stress level that they experienced because of their child and the support they received from their close family and other family members, their friends and the local community. For parents, the most stressful thing is the moment of finding out their child’s developmental disabilities. The biggest support they receive from their partners and parents.

Age at Death in Individuals with Intellectual Disabilities.

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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.

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

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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.

Adolescents with Intellectual Disability and Suicidal Behavior

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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.

Mood disorders in intellectual disability.

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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.

The Biggest Mover: Empowering Students with Intellectual and Developmental Delays and Physical Challenges

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Brown, Michelle J.

2018-01-01

The Biggest Mover Program, an educational program to improve daily exercise and healthy eating was developed to address the learning needs of students with intellectual and developmental disabilities and physical challenges. The program was part of a three-part program to improve the knowledge of students, staff, and teachers through the use of…

Intellectual Disability and Parenthood

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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.

Emotional and Behavioural Problems in Children with Visual Impairment, Intellectual and Multiple Disabilities

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Alimovic, S.

2013-01-01

Background: Children with multiple impairments have more complex developmental problems than children with a single impairment. Method: We compared children, aged 4 to 11 years, with intellectual disability (ID) and visual impairment to children with single ID, single visual impairment and typical development on "Child Behavior Check…

Assessment of the quality of life in families with children who have intellectual and developmental disabilities in Slovenia.

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Cagran, B; Schmidt, M; Brown, I

2011-12-01

Research was conducted, within the framework of the International Family Quality of Life Project, on the quality of life of families with a member who has a disability. We concentrated on the nine specific domains that the family life measure used, and recorded data from five of its six measurement dimensions: Importance, Opportunities, Initiative, Attainment and Satisfaction. The sample consisted of 20 families from Slovenia with children who have intellectual or developmental disabilities. The data were collected using the Family Quality of Life Survey-2006. Except for Community Interaction, the other domains (Health, Financial Well-Being, Family Relations, Support from Others, Support Services, Influence of Values, Careers, Leisure and Recreation) show statistically significant differences among the five dimensions measured. Importance was rated highest, and Attainment and Opportunities were rated lowest, while Initiative and Satisfaction were evaluated lower than Importance but higher than Attainment and Opportunities. Among the domains of family life, Family Relations was evaluated the highest from the perspective of all five dimensions. The family members rated Importance high for all of the quality of family life domains, but it appears from the lower Opportunities scores that their opportunities are limited; this may result in fewer possibilities for attaining a better quality of life. The results of our research are useful to Slovene researchers who work in the areas of special pedagogy and rehabilitation, politicians, non-governmental organisations and social services. The quality of life of families with children with disabilities, their empowerment and their inclusion into community life should be significantly enhanced when consideration is given to all the family members' support and service needs. © 2011 The Authors. Journal of Intellectual Disability Research © 2011 Blackwell Publishing Ltd.

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

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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.

Symbol labelling improves advantageous decision-making on the Iowa Gambling Task in people with intellectual disabilities.

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Dymond, Simon; Bailey, Rebecca; Willner, Paul; Parry, Rhonwen

2010-01-01

Individuals with intellectual and developmental disabilities often have difficulties foregoing short-term loss for long-term gain. The Iowa Gambling Task (IGT) has been extensively adopted as a laboratory measure of this ability. In the present study, we undertook the first investigation with people with intellectual disabilities using a two-choice child version of the IGT, with measures of intellectual and executive functioning. Compared to a group of matched controls, people with intellectual disabilities performed advantageously and showed high levels of subjective awareness about the relative goodness and badness of the decks. A symbol labelling intervention, in which participants were taught to label the good and bad decks at regular intervals significantly improved advantageous decision-making to levels approximating that of controls. Factor analysis of executive functioning scores identified working memory and mental flexibility (response initiation and set shifting), with a near-significant inverse correlation between the extent to which the intervention was required and mental flexibility. These findings show, for the first time, that people with intellectual disabilities are capable of performing advantageously on the IGT and add to the growing clinical literature on decision-making. Copyright 2009 Elsevier Ltd. All rights reserved.

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

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

2016-12-01

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

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

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... 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 ...

Evaluation of An Activities of Daily Living Scale for Adolescents and Adults with Developmental Disabilities

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Maenner, Matthew J; Smith, Leann E; Hong, Jinkuk; Makuch, Renee; Greenberg, Jan S; Mailick, Marsha R

2012-01-01

Background Activity limitations are an important and useful dimension of disability, but there are few validated measures of activity limitations for adolescents and adults with developmental disabilities. Objective/Hypothesis To describe the development of the Waisman Activities of Daily Living (W-ADL) Scale for adolescents and adults with developmental disabilities, and systematically evaluate its measurement properties according to an established set of criteria. Methods The W-ADL was administered among four longitudinally-studied groups of adolescents and adults with developmental disabilities: 406 with autism; 147 with fragile-X syndrome; 169 with Down syndrome, and 292 with intellectual disability of other or unknown origin. The W-ADL contains 17 activities and each is rated on a 3-point scale (0=“does not do at all”, 1=“does with help”, 2=“independent”), and a standard set of criteria were used to evaluate its measurement properties. Results Across the disability groups, Cronbach’s alphas ranged from 0.88 to 0.94, and a single-factor structure was most parsimonious. The W-ADL was reliable over time, with weighted kappas between 0.92 and 0.93. Criterion and construct validity were supported through substantial associations with the Vineland Screener, need for respite services, caregiving burden, and competitive employment. No floor or ceiling effects were present. There were significant group differences in W-ADL scores by maternally-reported level of intellectual disability (mild, moderate, severe, profound). Conclusions The W-ADL exceeded the recommended threshold for each quality criterion the authors evaluated. This freely-available tool is an efficient measure of activities of daily living for surveys and epidemiological research concerning adolescents and adults with developmental disabilities. PMID:23260606

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

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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…

Interventions for adults with mild intellectual disabilities and mental ill-health: a systematic review.

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Osugo, M; Cooper, S-A

2016-06-01

People with intellectual disabilities have very high rates of mental ill health. Standard psychosocial interventions designed for the general population may not be accessible for people with mild intellectual disabilities, and drug usage tends to be modified - 'start low and go slow'. This systematic review aims to synthesise the evidence on psychological, pharmacological and electroconvulsive therapy (ECT) interventions for adults with mild intellectual disabilities and mental ill health. PRISMA guidelines were followed. Medline, Embase, PsycINFO and CINAHL were searched, as was grey literature and reference lists of selected papers. Papers were selected based on pre-defined inclusion and exclusion criteria. A proportion of papers were double reviewed. Data was extracted using a structured table. PROSPERO 2015:CRD42015015218. Initially, 18 949 records were identified. Sixteen studies were finally selected for inclusion; seven on psychological therapies, two on group exercise, five on antipsychotics and two on antidepressants. They do not provide definitive evidence for effectiveness of psychosocial interventions, nor address whether starting low and going slow is wise, or causes sub-optimum therapy. There are few evidence-based interventions for people with mild intellectual disabilities and mental ill-health; existing literature is limited in quantity and quality. Group cognitive-behavioural therapies have some supporting evidence - however, further randomised control trials are required, with longer-term follow-up, and larger sample sizes. © 2016 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

Self-compassion and psychological distress in parents of young people and adults with intellectual and developmental disabilities.

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Robinson, Suzanne; Hastings, Richard P; Weiss, Jonathan A; Pagavathsing, Jaffni; Lunsky, Yona

2018-05-01

Parenting an individual with intellectual and developmental disabilities (IDD) can be challenging, particularly during adulthood. It is important to better understand ways of supporting families as individuals with IDD age. Self-compassion is a potential internal coping resource for parents, and is strongly linked to positive mental health outcomes, though research has yet to examine it in parents of adults with IDD. The current study examines the association between self-compassion and measures of well-being for 56 parents of adults with IDD. Greater self-compassion was related to lower levels of stress and depression, even after accounting for other known stressors, such as economic disadvantage, having a child with an Autism Spectrum Disorder diagnosis, and high parent burden. Self-compassion may offer resiliency against these parenting challenges. © 2017 John Wiley & Sons Ltd.

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

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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.

All-Cause, 30-Day Readmissions Among Persons With Intellectual and Developmental Disabilities and Mental Illness.

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Balogh, Robert; Lin, Elizabeth; Dobranowski, Kristin; Selick, Avra; Wilton, Andrew S; Lunsky, Yona

2018-03-01

Early hospital readmissions within 30 days of discharge are common and costly. This research describes predictors of all-cause, 30-day hospital readmissions among persons with intellectual and developmental disabilities (IDD), a group known to experience high rates of hospitalization. A cohort of 66,484 adults with IDD from Ontario, Canada, was used to create two subgroups: individuals with IDD only and those with IDD and mental illness. The rates of hospital readmission were determined and contrasted with a comparison subgroup of people without IDD who have mental illness. Compared with those with mental illness only, individuals with IDD and mental illness were 1.7 times more likely to experience a hospital readmission within 30 days. Predictors of their readmission rates included being a young adult and having high morbidity levels. The high rate of hospital readmission suggests that individuals with IDD and mental illness need attention regarding discharge planning and outpatient follow-up.

The implications of having attention-deficit/hyperactivity disorder in male adolescents with intellectual disability.

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Carmeli, Eli; Klein, Neomy; Sohn, Mordechai

2007-01-01

Attention-deficit/hyperactivity disorder (ADHD) is currently defined as a cognitive/behavioral developmental disorder where all clinical criteria are behavioral. The purpose of this study was to demonstrate a correlation between social skills and ADHD among adolescents with intellectual disabilities (ID). The study concerns the specific cognitive and adaptive skills of adolescents dually diagnosed with mild intellectual disabilities and comorbid pathology as ADHD. Three age-and IQ-match groups (males, n = 12 in each group) were investigated. Group I--composed of adolescent diagnosed with mild ID, group II--adolescents diagnosed with ADHD, and group III--adolescents diagnosed with ID and ADHD. The instruments used in the study were Wechsler Intelligence Scale for Children (WISC, according to the chronological age of the subjects) and the short version of the Developmental Behavior Checklist (DBC). Results confirm that comorbidity is a factor differentiating. ADHD strongly increased the impairment of social skills, while behavioral disorders were less damaging in ID performance. The WISC and DBC instruments should be used with confidence in clinical and service settings, to allow a better assessment of co-occurrence morbidity in adolescents with ID. The interactions between intellectual disability and psychopathology behavior highlight the need to plan a more accurate diagnosis and appropriate rehabilitative intervention program, essential for improving the quality of life of the ID population.

Health promotion and disease prevention strategies in older adults with Intellectual and Developmental Disabilities

Directory of Open Access Journals (Sweden)

Eli eCarmeli

2014-04-01

Full Text Available The rapid growth in the number of individuals living with Intellectual and Developmental Disabilities (IDD along with their increased longevity present challenges to those concerned about health and well-being of this unique population. While much is known about health promotion and disease prevention in the general geriatric population, far less is known about those in older adults with IDD. Effective and efficient health promotion and disease prevention strategies need to be developed and implemented for improving the health and quality of life of older adults living with IDD. This is considered to be challenging given the continued shrinkage in the overall health care and welfare system services due to the cut in the governmental budget in some of the western countries. The ideal health promotion and disease prevention strategies for older adults with IDD should be tailored to the individuals’ health risks, address primary and secondary disease prevention and prevent avoidable impairments that cause premature institutionalization. Domains of intervention should include cognitive, mental and physical health, accommodations, workplace considerations, assistive technology, recreational activities and nutrition.

Beaulieu-Boycott-Innes syndrome: an intellectual disability syndrome with characteristic facies.

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Casey, Jillian; Jenkinson, Allan; Magee, Alex; Ennis, Sean; Monavari, Ahmad; Green, Andrew; Lynch, Sally A; Crushell, Ellen; Hughes, Joanne

2016-10-01

We report a female child from an Irish Traveller family presenting with severe intellectual disability, dysmorphic features, renal anomalies, dental caries and cyclical vomiting. Current health issues include global developmental delay, mild concentric left ventricular hypertrophy, dental malocclusion and caries and a single duplex left kidney. The proband and her mother also have multiple epiphyseal dysplasia. Whole-exome sequencing was performed to identify the underlying genetic cause. DNA from the proband was enriched with the Agilent Sure Select v5 Exon array and sequenced on an Illumina HiSeq. Rare homozygous variants were prioritized. Whole-exome sequencing identified three linked homozygous missense variants in THOC6 (c.298T>A, p.Trp100Arg; c.700G>C, p.Val234Leu; c.824G>A, p.Gly275Asp) as the likely cause of this child's intellectual disability syndrome, resulting in a molecular diagnosis of Beaulieu-Boycott-Innes syndrome (BBIS). This is the first report of BBIS in Europe. BBIS has been reported previously in two Hutterite families and one Saudi family. A review of all patients to date shows a relatively homogenous phenotype. Core clinical features include low birth weight with subsequent growth failure, short stature, intellectual disability with language delay, characteristic facies, renal anomalies and dental malocclusion with caries. Some patients also have cardiac defects. All patients show characteristic dysmorphic facial features including a tall forehead with high anterior hairline and deep-set eyes with upslanting palpebral fissures. The coexistence of intellectual disability together with these characteristic facies should provide a diagnostic clue for BBIS during patient evaluation.

The relationship between physical ill-health and mental ill-health in adults with intellectual disabilities.

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Dunham, A; Kinnear, D; Allan, L; Smiley, E; Cooper, S-A

2018-05-01

disabilities is overwhelming, such that associations are not found with mental ill-health. Mental health interventions and preventative measures are essential for the entire population with intellectual disabilities and should not be focussed on subgroups based on overall health burden. © 2018 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

The roles of adult siblings in the lives of people with severe intellectual and developmental disabilities.

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Hall, Sarah A; Rossetti, Zach

2018-05-01

Siblings of people with intellectual and developmental disabilities (IDD) often assume key roles to support their brothers and sisters. For people with more significant support needs, siblings may undertake additional roles and responsibilities throughout their lives. The purpose of the present study was to identify and describe the roles of adult siblings who have a brother or sister with severe IDD. Seventy-nine adult siblings from 19 to 72 years of age completed an online survey with open-ended questions about the roles they play in their relationships with their brother or sister. Thematic analysis resulted in identification of several roles including caregiver, friend (social partner), advocate, legal representative, sibling (teacher/role model), leisure planner and informal service coordinator. Siblings assume key roles in the lives of people with IDD and need support from family and professionals to perform these roles. © 2017 John Wiley & Sons Ltd.

Evaluating validity and reliability of Persian version of Supports Intensity Scale in adults with intellectual disability

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Shahin Soltani

2013-12-01

Full Text Available Background: Shifting paradigms regarding the ways to assess the support needs of people with intellectual disability in 1980 necessitates the design and development of appropriate tools more than ever. In this regard, American Association on Intellectual and Developmental Disabilities (AAIDD developed Supports Intensity Scale (SIS to respond the lack of an appropriate measurement tool. The aim of this study is the cultural adaptation and evaluation of psychometric properties of Supports Intensity Scale in adults with intellectual disability. Methods: Validity of Persian version of SIS was assessed by Content validity. The reliability of the scale was evaluated using Cronbach's alpha and test–retest reliability with a 3-week interval. In this study, the sample contained 43 adults (29 men and 14 women with intellectual disability. Results: The content of the Persian version of SIS was approved by the experts. The Cronbach's alpha reliability coefficients for the subscales ranged between 0.80 and 0.99. Also, Intraclass correlation coefficients ranged between 0.90 and 0.99 (P<0.001. Furthermore, all Pearson correlation coefficients among the SIS subscales ranged between 0.63 and 0.98 (P<0.01. Conclusion: The results of this study indicated that the validity and reliability of the equivalent Persian version of SIS for identifying pattern and required supports intensity in adults with intellectual disability is acceptable.

Paediatric palliative care and intellectual disability-A unique context.

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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.

Parental Appraisal of the Family Impact of Childhood Developmental Disability: Times of Sadness and Times of Joy

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Trute, Barry; Hiebert-Murphy, Diane; Levine, Kathryn

2007-01-01

Background: Parental positive and negative appraisals of the family impact of childhood disability are tested as early predictors of parental self-esteem and overall family adjustment in households with young children with intellectual and developmental disabilities. Method: Within 103 Canadian families, 103 mothers and 55 fathers independently…

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

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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…

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

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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.…

PARENT’S SATISFACTION WITH SOME FEATURES OF EARLY CARE PROVISIONS FOR CHILDREN WITH DIFFERENT LEVELS OF INTELLECTUAL DISABILITIES

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Ljiljana PINTARIC MLINAR

2013-09-01

Full Text Available Probably from the very beginning of the human curiosity in disability features for family’s values, structures, parenting styles, circles of support, strengths and others, have been just as appealing as the child or adult with disabilities themselves. As many studies confirmed, professionals' approach to parents, getting adequate information and type of treatment present a challenge to families of children with established developmental disabilities and those at risk for disability. The main purpose of this study was to analyze parents' satisfaction with these three main features of support in early treatment of their child with intellectual disability. The sample consisted of 81 families with intellectually disabled child, recruited from seven types of care provided in three towns in Croatia. Data were analyzed with one-way ANOVA comparing variety of parents satisfaction in four groups formed according to the level of intellectual disability. The method revealed a significant difference among groups in the variable referring to the parents satisfaction with treatment accessibility and its frequency provided.

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

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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.

PREVALENCE OF REFRACTIVE ERROR, STRABISMUS AND AMBLYOPIA AMONG CHILDREN WITH NORMAL DEVELOPMENT OR GLOBAL DEVELOPMENTAL DELAY/INTELLECTUAL DISABILITY ATTENDING OPHTHALMOLOGY OPD AT KLES HOSPITAL, BELAGAVI- A RETROSPECTIVE STUDY

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Smitha K. S

2017-04-01

Full Text Available BACKGROUND Global developmental delay/intellectual disability are on a rise in children in the present time. Ocular and visual anomalies are frequently associated with it of which refractive errors are the most frequent. This if goes unnoticed leads to strabismus and amblyopia. MATERIALS AND METHODS This study aims to assess the prevalence of refractive error, strabismus and amblyopia among children with normal development or global developmental delay/intellectual disability attending ophthalmology OPD at KLES Hospital, Belagavi. Case records of all 200 new patients less than or equal to 12 years of age group who attended KLES, Dr. Prabhakar Kore Hospital between January 2015 and December 2015 were retrospectively reviewed. RESULTS The male:female ratio was 1.22:1. Out of the total evaluated 200 cases, 130 cases were with normal development and 70 with GDD/ID. Refractive errors were 85%, whereas the cases of amblyopia was 45.50% and strabismus 39.50%. Amblyopia with refractive error having GDD/ID was stastically significant as compared to amblyopia with refractive error having normal development (p=0.001. CONCLUSION Refractive error was the most common ocular disorder seen. Refractive error with amblyopia is more in children with GDD/ID as compared to normal children. Owing to the high percentage of visual anomalies, ophthalmological referral becomes essential in children with developmental anomalies.

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

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... 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 ...

Examining the Validity of ADHD as a Diagnosis for Adolescents with Intellectual Disabilities: Clinical Presentation

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Neece, Cameron L.; Baker, Bruce L.; Crnic, Keith; Blacher, Jan

2013-01-01

Children with intellectual and developmental disabilities are at heightened risk for mental disorders. Using current diagnostic criteria, disruptive behavior disorders, specifically Attention-Deficit/Hyperactivity Disorder (ADHD), appear to be the most prevalent co-occurring disorders. However, the validity of ADHD as a diagnosis for children and…

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

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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.

Expanding Opportunities for Students with Intellectual Disability

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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…

Teaching Young Adults with Intellectual and Developmental Disabilities Community-Based Navigation Skills to Take Public Transportation.

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Price, Richard; Marsh, Abbie J; Fisher, Marisa H

2018-03-01

Facilitating the use of public transportation enhances opportunities for independent living and competitive, community-based employment for individuals with intellectual and developmental disabilities (IDD). Four young adults with IDD were taught through total-task chaining to use the Google Maps application, a self-prompting, visual navigation system, to take the bus to locations around a college campus and the community. Three of four participants learned to use Google Maps to independently navigate public transportation. Google Maps may be helpful in supporting independent travel, highlighting the importance of future research in teaching navigation skills. Learning to independently use public transportation increases access to autonomous activities, such as opportunities to work and to attend postsecondary education programs on large college campuses.Individuals with IDD can be taught through chaining procedures to use the Google Maps application to navigate public transportation.Mobile map applications are an effective and functional modern tool that can be used to teach community navigation.

Interrogated with Intellectual Disabilities: The Risks of False Confession.

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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.

Staff attitudes towards people with intellectual disabilities in Japan and the United States.

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Horner-Johnson, W; Keys, C B; Henry, D; Yamaki, K; Watanabe, K; Oi, F; Fujimura, I; Graham, B C; Shimada, H

2015-10-01

Staff attitudes may affect choices available to persons with intellectual disabilities (ID). This study examined attitudes towards people with ID among staff working with people with ID in Japan and the United States. Attitudes of staff working with people with ID in Japan and the United States were compared using the Community Living Attitudes Scale, Intellectual Disabilities Form. Responses were examined via multivariate analysis of variance. In unadjusted analyses, Japanese staff exhibited a greater tendency towards Sheltering and Exclusion of people with ID and lower endorsement of Empowerment and Similarity of people with ID. After controlling for covariates, the country effect was no longer significant for Sheltering and Exclusion. Age and education were significantly associated with attitudes in the adjusted model. While attitudes in Japan appeared less supportive of community inclusion of people with ID, some of the differences between countries were attributable to other staff characteristics such as age and education. Findings provide new information about how attitudes of staff in each country compare with each other. © 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

An algorithm for the diagnosis of X-linked intellectual disability in children

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V. Yu. Voinova

2016-01-01

Full Text Available X-linked intellectual disability (XLID is a clinically and genetically heterogeneous group of hereditary diseases caused by mutations on the X chromosome, which lead to impaired intellectual development. The paper determines for the first time the proportion of X-linked diseases (6.54% in the pattern of intellectual disability in children. A system has been developed to quantify the clinical severity of fragile X mental retardation syndrome and Rett syndrome. A system has been scientifically justified to predict the clinical severity, which is based on an analysis of the impact of genetic and epigenetic factors (mutation type and location, X chromosome inactivation. The authors have determined the contribution of nonrandom X inactivation to the clinical polymorphism of various forms of XLID and established its role as an important diagnostic marker for pathology. It is shown that the study of X chromosome inactivation can identify asymptomatic female carriers of X-linked mutations to provide medical genetic counseling to families. An algorithm has been elaborated to diagnose XLID among the undifferentiated forms of mental developmental abnormalities in children. 

Sibling advocates of people with intellectual disabilities.

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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.

Intellectual disability and the prison setting

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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.

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

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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

Sexual health for people with intellectual disability.

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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.

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

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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.

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

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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…

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

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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

Intervention for Anxiety and Problem Behavior in Children with Autism Spectrum Disorder and Intellectual Disability

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Moskowitz, Lauren J.; Walsh, Caitlin E.; Mulder, Emile; McLaughlin, Darlene Magito; Hajcak, Greg; Carr, Edward G.; Zarcone, Jennifer R.

2017-01-01

There is little research on the functional assessment and treatment of anxiety and related problem behavior in children with autism spectrum disorder (ASD), particularly those with intellectual and developmental disability (IDD). In a recent study, we evaluated a multimethod strategy for assessing anxiety in children with ASD and IDD ("Am J…

A Systematic Review of Informal Relationships among Parents of Individuals with Intellectual Disability or Autism

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Boehm, Thomas L.; Carter, Erik W.

2016-01-01

Social relationships can shape the well-being of parents of children with intellectual and developmental disabilities (IDDs). Although much attention has focused on relationships with other family members or professionals, less is known about the place and contributions of informal relationships (i.e., non-family, unpaid others) in the lives of…

Visual Attention and Academic Performance in Children with Developmental Disabilities and Behavioural Attention Deficits

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Kirk, Hannah E.; Gray, Kylie; Riby, Deborah M.; Taffe, John; Cornish, Kim M.

2017-01-01

Despite well-documented attention deficits in children with intellectual and developmental disabilities (IDD), distinctions across types of attention problems and their association with academic attainment has not been fully explored. This study examines visual attention capacities and inattentive/hyperactive behaviours in 77 children aged 4 to…

Cell Phone Use by Adults with Intellectual Disabilities

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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…

Development and validation of the Learning Disabilities Needs Assessment Tool (LDNAT), a HoNOS-based needs assessment tool for use with people with intellectual disability.

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Painter, J; Trevithick, L; Hastings, R P; Ingham, B; Roy, A

2016-12-01

In meeting the needs of individuals with intellectual disabilities (ID) who access health services, a brief, holistic assessment of need is useful. This study outlines the development and testing of the Learning Disabilities Needs Assessment Tool (LDNAT), a tool intended for this purpose. An existing mental health (MH) tool was extended by a multidisciplinary group of ID practitioners. Additional scales were drafted to capture needs across six ID treatment domains that the group identified. LDNAT ratings were analysed for the following: item redundancy, relevance, construct validity and internal consistency (n = 1692); test-retest reliability (n = 27); and concurrent validity (n = 160). All LDNAT scales were deemed clinically relevant with little redundancy apparent. Principal component analysis indicated three components (developmental needs, challenging behaviour, MH and well-being). Internal consistency was good (Cronbach alpha 0.80). Individual item test-retest reliability was substantial-near perfect for 20 scales and slight-fair for three scales. Overall reliability was near perfect (intra-class correlation = 0.91). There were significant associations with five of six condition-specific measures, i.e. the Waisman Activities of Daily Living Scale (general ability/disability), Threshold Assessment Grid (risk), Behaviour Problems Inventory for Individuals with Intellectual Disabilities-Short Form (challenging behaviour) Social Communication Questionnaire (autism) and a bespoke physical health questionnaire. Additionally, the statistically significant correlations between these tools and the LDNAT components made sense clinically. There were no statistically significant correlations with the Psychiatric Assessment Schedules for Adults with Developmental Disabilities (a measure of MH symptoms in people with ID). The LDNAT had clinically utility when rating the needs of people with ID prior to condition-specific assessment(s). Analyses of internal

A feasibility study of behavioural activation for depressive symptoms in adults with intellectual disabilities.

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Jahoda, A; Melville, C A; Pert, C; Cooper, S-A; Lynn, H; Williams, C; Davidson, C

2015-11-01

effectiveness, with more sensitive measurement of change in activity. © 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

Socio-emotional regulation in children with intellectual disability and typically developing children, and teachers' perceptions of their social adjustment.

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Baurain, Céline; Nader-Grosbois, Nathalie; Dionne, Carmen

2013-09-01

This study examined the extent to which socio-emotional regulation displayed in three dyadic interactive play contexts (neutral, competitive or cooperative) by 45 children with intellectual disability compared with 45 typically developing children (matched on developmental age, ranging from 3 to 6 years) is linked with the teachers' perceptions of their social adjustment. A Coding Grid of Socio-Emotional Regulation by Sequences (Baurain & Nader-Grosbois, 2011b, 2011c) focusing on Emotional Expression, Social Behavior and Behavior toward Social Rules in children was applied. The Social Adjustment for Children Scale (EASE, Hugues, Soares-Boucaud, Hochman, & Frith, 1997) and the Assessment, Evaluation and Intervention Program System (AEPS, Bricker, 2002) were completed by teachers. Regression analyses emphasized, in children with intellectual disability only, a positive significant link between their Behavior toward Social Rules in interactive contexts and the teachers' perceptions of their social adjustment. Children with intellectual disabilities who listen to and follow instructions, who are patient in waiting for their turn, and who moderate their externalized behavior are perceived by their teachers as socially adapted in their daily social relationships. The between-groups dissimilarity in the relational patterns between abilities in socio-emotional regulation and social adjustment supports the "structural difference hypothesis" with regard to the group with intellectual disability, compared with the typically developing group. Hierarchical cluster cases analyses identified distinct subgroups showing variable structural patterns between the three specific categories of abilities in socio-emotional regulation and their levels of social adjustment perceived by teachers. In both groups, several abilities in socio-emotional regulation and teachers' perceptions of social adjustment vary depending on children's developmental age. Chronological age in children with

Chromosomal microarrays testing in children with developmental disabilities and congenital anomalies

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Guillermo Lay-Son

2015-04-01

Full Text Available OBJECTIVES: Clinical use of microarray-based techniques for the analysis of many developmental disorders has emerged during the last decade. Thus, chromosomal microarray has been positioned as a first-tier test. This study reports the first experience in a Chilean cohort. METHODS: Chilean patients with developmental disabilities and congenital anomalies were studied with a high-density microarray (CytoScan(tm HD Array, Affymetrix, Inc., Santa Clara, CA, USA. Patients had previous cytogenetic studies with either a normal result or a poorly characterized anomaly. RESULTS: This study tested 40 patients selected by two or more criteria, including: major congenital anomalies, facial dysmorphism, developmental delay, and intellectual disability. Copy number variants (CNVs were found in 72.5% of patients, while a pathogenic CNV was found in 25% of patients and a CNV of uncertain clinical significance was found in 2.5% of patients. CONCLUSION: Chromosomal microarray analysis is a useful and powerful tool for diagnosis of developmental diseases, by allowing accurate diagnosis, improving the diagnosis rate, and discovering new etiologies. The higher cost is a limitation for widespread use in this setting.

Comparison of Perinatal Risk Factors Associated with Autism Spectrum Disorder (ASD), Intellectual Disability (ID), and Co-Occurring ASD and ID

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Schieve, Laura A.; Clayton, Heather B.; Durkin, Maureen S.; Wingate, Martha S.; Drews-Botsch, Carolyn

2015-01-01

While studies report associations between perinatal outcomes and both autism spectrum disorder (ASD) and intellectual disability (ID), there has been little study of ASD with versus without co-occurring ID. We compared perinatal risk factors among 7547 children in the 2006-2010 Autism and Developmental Disability Monitoring Network classified as…

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

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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…

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

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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.

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

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

2012-01-01

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

Psychotherapy with people with developmental disabilities

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Barbara Zafošnik

2011-08-01

Full Text Available People with developmental disabilities can experience any psychological abnormalitiy and psychiatric illness as do people without developmental disabilities. Due to different diagnostic criteria, assessment procedures and instruments, we lack definite prevalence rates for people with developmental disabilities, also suffering from mental health problems, eventhough most studies place the rate at 20 to 40%. One of the possible treatment alternatives for augmenting psychological well-being is psychotherapy, but is extremely rarely used for people with severe and profound disabilities, where speech cannot be the main therapeutic medium. So, those that are included in the psychotherapuetic process are predominantly clients with mild developmental disabilities, and they are mostly in cognitive-behavioral therapy. Recently, two models of (psychotherapy for persons with severe and profound developmental disabilities were developed: developmental-dynamic relationship therapy and attachment-based behaviour therapy for children. Conceptually, they both originate form developmental psychoanalytic theories.

Intellectual Disability Policy as Developed, Expressed, and Valuated in AAIDD/The Arc Joint Statements: The Role of Organization Position Statements

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Luckasson, Ruth; Ford, Marty E.; McMillan, Elise D.; Misilo, Frederick M., Jr.; Nygren, Margaret A.

2017-01-01

The American Association on Intellectual and Developmental Disabilities (AAIDD) and The Arc of the United States (The Arc) have a long history of joined efforts to develop, express, and evaluate disability policies. These efforts have resulted in a series of formal statements on critical issues such as education, healthcare, human rights, and…

Predictors of Visual-Motor Integration in Children with Intellectual Disability

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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…

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

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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…

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

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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

Health promotion and intellectual disability: listening to men.

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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.

Personalization, self-advocacy and inclusion: An evaluation of parent-initiated supported living schemes for people with intellectual and developmental disabilities in the Netherlands.

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Reindl, Marie-Sol; Waltz, Mitzi; Schippers, Alice

2016-06-01

This study focused on parent-initiated supported living schemes in the South of the Netherlands and the ability of these living schemes to enhance participation, choice, autonomy and self-advocacy for people with intellectual or developmental disabilities through personalized planning, support and care. Based on in-depth interviews with tenants, parents and caregivers, findings included that parent-initiated supported housing schemes made steps towards stimulating self-advocacy and autonomy for tenants. However, overprotective and paternalistic attitudes expressed by a significant number of parents, as well as structural constraints affecting the living schemes, created obstacles to tenants' personal development. The study calls for consideration of interdependence as a model for the relationship of parents and adult offspring with disabilities. The benefits and tensions inherent within this relationship must be taken into consideration during inclusive community building. © The Author(s) 2016.

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

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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.

Psychodynamic Therapy and Intellectual Disabilities: Dealing with Challenging Behaviour.

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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…

Early onset intellectual disability in chromosome 22q11.2 deletion syndrome.

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Cascella, Marco; Muzio, Maria Rosaria

2015-01-01

Chromosome 22q11.2 deletion syndrome, or DiGeorge syndrome, or velocardiofacial syndrome, is one of the most common multiple anomaly syndromes in humans. This syndrome is commonly caused by a microdelection from chromosome 22 at band q11.2. Although this genetic disorder may reflect several clinical abnormalities and different degrees of organ commitment, the clinical features that have driven the greatest amount of attention are behavioral and developmental features, because individuals with 22q11.2 deletion syndrome have a 30-fold risk of developing schizophrenia. There are differing opinions about the cognitive development, and commonly a cognitive decline rather than an early onset intellectual disability has been observed. We report a case of 22q11.2 deletion syndrome with both early assessment of mild intellectual disabilities and tetralogy of Fallot as the only physic manifestation. Copyright © 2015 Sociedad Chilena de Pediatría. Publicado por Elsevier España, S.L.U. All rights reserved.

[Assessment of social networks between developmental physicians and welfare facilities/specialists for children with intellectual disabilities in Japan].

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Inagaki, Masumi; Horiguchi, Toshihiro; Kaga, Makiko

2004-05-01

The social networks between Japanese child neurologists and welfare facilities/specialists for children with mental retardation (MR) were assessed. A total of 113 physicians answered our mail-in questionnaire. Most of the doctors had various connections with nursery homes for children with MR or severe motor and intellectual disabilities (SMID) and with public health centers, and often collaborated with teachers of schools and kindergartens. On the other hand, most physicians had little relation with residential and vocational facilities for adults with MR, and with specialists in residential or community care. There was a statistical correlation between the number of facilities or collaborated specialists and the number of persons seen by each physician; however, the physicians' experience and affiliations had no relation. In view of 'social participation', physicians who usually see children with developmental disorders can play an important role in decision making of their life-style with their families.

What Is Right? Ethics in Intellectual Disabilities Research

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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…

Fruit flies and intellectual disability.

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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.

Students' Attitudes towards Individuals with an Intellectual Disability

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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.…

Identifying the key concerns of Irish persons with intellectual disability.

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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

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

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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.

Intellectual Disability and Space: Critical Narratives of Exclusion

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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…

Teaching Students with Intellectual Disabilities: Constructivism or Behaviorism?

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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.…

Genetics Home Reference: PPP2R5D-related intellectual disability

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... 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 ...

De novo duplication of 17p13.1-p13.2 in a patient with intellectual disability and obesity.

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Kuroda, Yukiko; Ohashi, Ikuko; Tominaga, Makiko; Saito, Toshiyuki; Nagai, Jun-Ichi; Ida, Kazumi; Naruto, Takuya; Masuno, Mitsuo; Kurosawa, Kenji

2014-06-01

17p13.1 Deletion encompassing TP53 has been described as a syndrome characterized by intellectual disability and dysmorphic features. Only one case with a 17p13.1 duplication encompassing TP53 has been reported in a patient with intellectual disability, seizures, obesity, and diabetes mellitus. Here, we present a patient with a 17p13.1 duplication who exhibited obesity and intellectual disability, similar to the previous report. The 9-year-old proposita was referred for the evaluation of intellectual disability and obesity. She also exhibited insulin resistance and liver dysfunction. She had wide palpebral fissures, upturned nostrils, a long mandible, short and slender fingers, and skin hyperpigmentation. Array comparative genomic hybridization (array CGH) detected a 3.2 Mb duplication of 17p13.1-p13.2 encompassing TP53, FXR2, NLGN2, and SLC2A4, which encodes the insulin-responsive glucose transporter 4 (GLUT4) associated with insulin-stimulated glucose uptake in adipocytes and muscle. We suggest that 17p13.1 duplication may represent a clinically recognizable condition characterized partially by a characteristic facial phenotype, developmental delay, and obesity. © 2014 Wiley Periodicals, Inc.

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

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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…

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...

BEHAVIORAL PROBLEMS IN CHILDREN WITH MILD AND MODERATE INTELLECTUAL DISABILITY

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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.

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

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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.

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

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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.

Intellectual Disability in Children; a Systematic Review

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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.

Overweight and obesity among children at risk of intellectual disability in 20 low and middle income countries.

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Savage, A; Emerson, E

2016-11-01

Children with intellectual disability (ID) in high income countries are at significantly greater risk of obesity than their non-disabled peers. We aimed to estimate the prevalence of overweight and obesity in 3 to 4-year-old children who are/are not at risk of ID in low and middle income countries. Secondary analysis of Round 4 and 5 UNICEF Multiple Indicator Cluster Surveys (MICS) from 20 low and middle income countries that included a total of 83 597 3 to 4-year-old children. Few differences in risk of overweight or obesity were apparent between 3 and 4-year-old children identified as being at risk/not at risk of ID in 20 low and middle income countries. In the two countries where statistically significant differences were observed, prevalence of overweight/obesity was lower among children at risk of ID. These results stand in stark contrast to evidence from high income countries which suggest that children with ID are at significantly increased risk of obesity when compared to their non-intellectually disabled peers. © 2016 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

Measurement of Mood in Adolescents with Intellectual Disability

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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…

A longitudinal perspective on parent-child conflict and conflict resolution in youth with or without developmental disability

OpenAIRE

Marquis, Willa

2017-01-01

Parent-child conflict is associated with a range of negative socioemotional outcomes for youth, including mental health problems, poorer social functioning, and long-term detrimental effects on romantic partnerships and their own parenting practices. Little is known about parent-child conflict in families of youth with developmental disabilities (DD), namely intellectual disability and autism spectrum disorders, despite their particular susceptibility to its problematic impact. Youth with DD ...

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

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Park, Jiyoon; Bouck, Emily

2018-04-17

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

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

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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.

Siblings of Adults with Intellectual Disabilities: Their Perspectives On Guardianship and Its Alternatives

OpenAIRE

Brady, Anna M.

2017-01-01

Adult siblings of people with intellectual and developmental disabilities (IDD) are often on the front lines of supporting their brothers and sisters with IDD through caregiving and guardianship roles after their parents pass away. However, these siblings are often uninformed or under informed about ways that they can support their brothers and sisters. This study had the following three purposes: to determine what adult siblings of adults with IDD know about guardianship and its alternatives...

Sexuality and Intellectual Disability

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... 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 ...

Healthy living: A health promotion program for adults with intellectual disability.

Science.gov (United States)

An, Andrea; McPherson, Lyn; Urbanowicz, Anna

2018-04-04

Adults with intellectual disability are more likely to experience a range of physical and mental health problems in comparison to the general population. However with access to appropriate health care and promotion, many of these health problems can be prevented. To explore the perspectives of stakeholders of a health promotion program established for adults with intellectual disability. Semi-structured interviews were conducted with 12 stakeholders of a health promotion program. Stakeholders included adults with intellectual disability (n = 6), their support persons (n = 4) and program presenters (n = 2). Adults with intellectual disability included three males and three females with a mean age of 45.5 years (range 37-51 years). Interviews were digitally recorded and transcribed verbatim. Transcripts were analysed using thematic analysis. Four main themes emerged from the data. The first theme highlights the positive feedback all stakeholders, especially adults with intellectual disability, had for the program and the second focuses on suggestions for changes to improve it. The third and final themes explore how having input from adults with intellectual disability and their support persons, who have a unique understanding of their needs, could be better incorporated into the development of the program. This health promotion program has been well received by people with intellectual disability when incorporated into their weekly social club meetings With encouragement and training, people with intellectual disability and their support workers could be more involved in the development of the program to ensure it is relevant to their needs. Copyright © 2018 Elsevier Inc. All rights reserved.

An Evaluation of Multi-Component Exposure Treatment of Needle Phobia in an Adult with Autism and Intellectual Disability

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Wolff, Jason J.; Symons, Frank J.

2013-01-01

Background: Fear of medical procedures in general and needles in particular can be a difficult clinical challenge to providing effective health care for individuals with intellectual and developmental disabilities. Methods: A changing criterion design was used to examine graduated exposure treatment for blood-injury-injection phobia in an adult…

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,…

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

Science.gov (United States)

Gruiz, Katalin

2015-01-01

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

Physical Fitness and Fatness in Adolescents with Intellectual Disabilities

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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…

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…

"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…

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

Science.gov (United States)

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

2014-11-01

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

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

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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.

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

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

Qualitative Study of Malnutrition in People with Intellectual Disabilities

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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…

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

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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.

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.

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…

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...

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)

Do individuals with intellectual disability have a lower peak heart rate and maximal oxygen uptake?

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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.

Effectiveness of Speech Therapy in Adults with Intellectual Disabilities

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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…

Cutting-Edge: Integrating Students with Intellectual and Developmental Disabilities into a 4-Year Liberal Arts College

Science.gov (United States)

Hafner, Dedra; Moffatt, Courtney; Kisa, Nutullah

2011-01-01

Cutting-Edge provides inclusion in college for students with intellectual disabilities (SWID). Cutting-Edge students attended college by taking undergraduate courses, resided in student housing, and engaged in student-life events as well as pursued community service, internships and employment. Undergraduate students were the best means to teach…

Inclusion for People with Developmental Disabilities: Measuring an Elusive Construct.

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Neely-Barnes, Susan Louise; Elswick, Susan E

2016-01-01

The philosophy of inclusion for people with intellectual and developmental disabilities (IDD) has evolved over the last 50 years. Over time, inclusion research has shifted from a focus on deinstitutionalization to understanding the extent to which individuals with IDD are meaningfully involved in the community and social relationships. Yet, there has been no agreed on way to measure inclusion. Many different measurement and data collection techniques have been used in the literature. This study proposes a brief measure of inclusion that can be used with family members and on survey instruments.

The Association between Education and Mortality for Adults with Intellectual Disability.

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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.

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

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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.

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.

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

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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.

Intellectually disabled students’ conceptions concerning the earth and heavenly bodies

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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.

An Audit of the Irish National Intellectual Disability Database

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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…

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,…

THE PROGRAM SUPPORT SOCIAL AND PSYCHOLOGICAL SAFETY OF CHILDREN WITH INTELLECTUAL DISABILITIES

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Pavel Aleksandrovich Kislyakov

2018-04-01

Full Text Available The article presents a description of the author’s program to support the social and psychological safety of children with intellectual disabilities enrolled in boarding school of VIII kind. The object of the study were children with intellectual disabilities. The subject of research – features of formation to children with intellectual disabilities the social and psychological safety. The methodological base are the special psychology (L.S. Vygotsky, S.L. Rubinstein, A. Speck. The results. Complex psychological and pedagogical support of social and psychological safety of children with intellectual disabilities reflects the content of psychological and pedagogical tasks (target function and technologies of their solution (instrumental function aimed at reducing internal and external risk factors. The target functions are: social and psychological adaptation, personal and developmental, the function of social support and psychological and pedagogical assistance, preventive and correctional function. Psycho-pedagogical objectives are the formation of skills of safe behavior and confront the dangers through the development of appropriate social skills, mental, physical and cognitive abilities, establishing a real and more comfortable with social contact (including municipal and educational environment, thereby ensuring individual protection and psychosocial well-being, support emotional balance, development of harmonious personality, to facilitate adaptation to the social environment, correction of risk factors of dysontogenesis. The program includes informative, technological and diagnostic modules. The basis for the construction of educational information in the field of security us based on the principle of integratively – interdisciplinary cooperation of academic subjects; a mix of mandatory core classes and extra-curricular and remedial work. Technological support included the following teaching methods: interactive (psychotechnical

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.

Suicide Behavior in Persons with Intellectual Disability

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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.

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 ...

Leadership development of individuals with developmental disabilities in the self-advocacy movement.

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Caldwell, J

2010-11-01

Exploring the life stories of leaders in the self-advocacy movement can expand our knowledge about leadership development of individuals with developmental disabilities. A better understanding of this process may assist with supporting the movement and leadership development of youth with disabilities. In-depth qualitative interviews were conducted with 13 leaders in the self-advocacy movement within the USA in order to explore their life stories. Purposeful sampling contributed to a diverse sample of leaders. A grounded theory approach led to the identification of major themes and factors associated with their leadership development. Four major themes emerged: (1) disability oppression and resistance; (2) environmental supports and relationships; (3) leadership skills; and (4) advanced leadership opportunities. Findings have conceptual and practical relevance for future interventions and research. © 2010 The Author. Journal of Intellectual Disability Research © 2010 Blackwell Publishing Ltd.

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

'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

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…

Utilization of genetic testing among children with developmental disabilities in the United States

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Kiely B

2016-07-01

Full Text Available Bridget Kiely, Sujit Vettam, Andrew Adesman Division of Developmental and Behavioral Pediatrics, Department of Pediatrics, Steven and Alexandra Cohen Children’s Medical Center of New York, New Hyde Park, NY, USA Purpose: Several professional societies recommend that genetic testing be routinely included in the etiologic workup of children with developmental disabilities. The aim of this study was to determine the rate at which genetic testing is performed in this population, based on data from a nationally representative survey.Methods: Data were analyzed from the Survey of Pathways to Diagnosis and Services, a telephone-based survey of parents and guardians of US school-age children with current or past developmental conditions. This study included 3,371 respondents who indicated that their child had an autism spectrum disorder (ASD, intellectual disability (ID, and/or developmental delay (DD at the time of survey administration. History of genetic testing was assessed based on report by the parent/s. Children were divided into the following five mutually exclusive condition groups: ASD with ID; ASD with DD, without ID; ASD only, without ID or DD; ID without ASD; and DD only, without ID or ASD. Logistic regression was used to assess the demographic correlates of genetic testing, to compare the rates of genetic testing across groups, and to examine associations between genetic testing and use of other health-care services.Results: Overall, 32% of this sample had a history of genetic testing, including 34% of all children with ASD and 43% of those with ID. After adjusting for demographics, children with ASD + ID were more than seven times as likely as those with ASD only, and more than twice as likely as those who had ID without ASD, to have undergone genetic testing. Prior specialist care (developmental pediatrician or neurologist and access to all needed providers within the previous year were associated with higher odds of genetic testing

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.

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

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

2016-05-28

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

Stressful Social Interactions Experienced by Adults with Mild Intellectual Disability

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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'…

The Sexuality of Adults with Intellectual Disability in Poland.

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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

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

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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…

Young children's attitudes toward peers with intellectual disabilities: effect of the type of school.

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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.

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

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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…

Teaching Reading for Students with Intellectual Disabilities: A Systematic Review

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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…

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

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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…

Understanding suicide and disability through three major disabling conditions: Intellectual disability, spinal cord injury, and multiple sclerosis.

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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

Bereavement process of people with intellectual disability

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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.

Young People with Intellectual Disability Transitioning to Adulthood: Do Behaviour Trajectories Differ in Those with and without Down Syndrome?

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Kitty-Rose Foley

Full Text Available Young people with intellectual disability exhibit substantial and persistent problem behaviours compared with their non-disabled peers. The aim of this study was to compare changes in emotional and behavioural problems for young people with intellectual disability with and without Down syndrome as they transition into adulthood in two different Australian cohorts.Emotional and behavioural problems were measured over three time points using the Developmental Behaviour Checklist (DBC for those with Down syndrome (n = 323 at wave one and compared to those with intellectual disability of another cause (n = 466 at wave one. Outcome scores were modelled using random effects regression as linear functions of age, Down syndrome status, ability to speak and gender.DBC scores of those with Down syndrome were lower than those of people without Down syndrome indicating fewer behavioural problems on all scales except communication disturbance. For both groups disruptive, communication disturbance, anxiety and self-absorbed DBC subscales all declined on average over time. There were two important differences between changes in behaviours for these two cohorts. Depressive symptoms did not significantly decline for those with Down syndrome compared to those without Down syndrome. The trajectory of the social relating behaviours subscale differed between these two cohorts, where those with Down syndrome remained relatively steady and, for those with intellectual disability from another cause, the behaviours increased over time.These results have implications for needed supports and opportunities for engagement in society to buffer against these emotional and behavioural challenges.

Sibling relationship quality and psychosocial outcomes among adult siblings of individuals with autism spectrum disorder and individuals with intellectual disability without autism.

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Tomeny, Theodore S; Ellis, Brandi M; Rankin, James A; Barry, Tammy D

2017-03-01

Research on adult typically-developing (TD) siblings of individuals with developmental disabilities remains limited, and outcomes for TD siblings appear to vary widely. For the current study, 82 adult TD siblings of individuals with autism spectrum disorder (ASD) or intellectual disability (ID) completed questionnaires about themselves and their affected sibling. Results of this study suggest that the attitudes possessed by adult TD siblings are important to consider when understanding adult TD sibling outcomes. Specifically, data indicate that higher levels of positive sibling relationship attitudes are related to TD siblings providing more aid/support to their sibling with a disability, along with having higher levels of general life satisfaction, and negatively related to levels of stress and depressive symptoms among TD siblings. Consistent with previous child research, siblings of individuals with ASD reported fewer positive sibling relationship attitudes compared to siblings of individuals with ID. Finally, group membership related to aid provided, depressive symptoms, and stress of TD siblings indirectly through sibling relationship attitudes. Overall, results indicate that sibling relationship attitudes may be particularly important to consider when conceptualizing sibling relationships when one sibling has an intellectual or developmental disability. Copyright © 2017 Elsevier Ltd. All rights reserved.

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

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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

Pragmatic skills of children and youth with mild intellectual disability

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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.

Theory of Mind, Socio-Emotional Problem-Solving, Socio-Emotional Regulation in Children with Intellectual Disability and in Typically Developing Children

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Baurain, Celine; Nader-Grosbois, Nathalie

2013-01-01

This study has examined the link between social information processing (SIP) and socio-emotional regulation (SER) in 45 children with intellectual disability (ID) and 45 typically developing (TD) children, matched on their developmental age. A Coding Grid of SER, focusing on Emotional Expression, Social Behaviour and Behaviours towards Social…

Adolescent Siblings of Individuals with Intellectual Disabilities with and without Comorbid Mental Health Problems: A Preliminary Comparison of Sibling Perceptions

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Shivers, Carolyn M.; Kozimor, Laura Michelle

2017-01-01

Introduction: The presence of comorbid mental illness in individuals with intellectual and developmental disabilities (IDD) has been shown to have additional negative impact on parents and caregivers. However, the impact of such dual diagnoses on typically developing siblings has yet to be examined. Methods: Parents and typically developing…

In their own words: the place of faith in the lives of young people with autism and intellectual disability.

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Liu, Eleanor X; Carter, Erik W; Boehm, Thomas L; Annandale, Naomi H; Taylor, Courtney E

2014-10-01

Abstract Although the prominence of spirituality and religious connections among the people of the United States is well documented, little is known about the place of faith in the lives of youth with developmental disabilities. In this qualitative interview study, we examined the perspectives of 20 young people with intellectual disability or autism on their faith, spiritual expressions, and disability. Participants identified key spiritual expressions and themes reflecting the importance of faith in their lives. They also shared perceptions of their disability in the context of their faith, highlighting affirmation and acceptance of their disability. We offer recommendations to families, faith communities, and service systems for supporting the spiritual formation, expression, and connections of young people with disabilities.

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

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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

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

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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.

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....

The main signs of ageing in people with intellectual disability.

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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.

The role of physical activity in improving physical fitness in children with intellectual and developmental disabilities.

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Collins, Kyla; Staples, Kerri

2017-10-01

One in three children in North America are considered overweight or obese. Children with intellectual and developmental disabilities (IDD) are at an increased risk for obesity than their typically developing peers. Decreased physical activity (PA) and low physical fitness may be contributing factors to this rise in obesity. Because children with IDD are at an increased risk of diseases related to inactivity, it is important to improve health-related physical fitness to complete activities of daily living and improve health. The focus of this research is on improving the performance of physical fitness components through physical activity programming among a group of children with IDD, ages 7-12 years. The Brockport Physical Fitness Test was used assess levels of physical fitness of 35 children with IDD (25 boys, 10 girls) before and after participation in a 10-week program. The results of paired sampled t-tests showed participation in 15-h PA program can significantly increase aerobic capacity and muscular strength and endurance in children with IDD. This study is aimed at understanding the role of PA in helping children with IDD to develop the fitness capacities essential to participation in a wide variety of activities. Copyright © 2017 Elsevier Ltd. All rights reserved.

The Siblings Relationship of Adolescents with and without Intellectual Disabilities

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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.…

Parenting Training for Intellectually Disabled Parents: A Cochrane Systematic Review

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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…

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

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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.

Knowledge about the joy in children with mild intellectual disability

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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.

Evaluating the characteristics of the grieving process in people with intellectual disability.

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Alcedo Rodríguez, M Ángeles; Cristóbal Fernández, Leticia; Gómez Sánchez, Laura E; Arias González, Víctor B

2018-04-23

The aim of this study was to examine the characteristics associated with the grieving process among a population with intellectual disability and the influence of particular variables. The sample was composed of 380 participants with intellectual disability, on whose behalf 149 professionals completed a 20-item questionnaire with four Likert-type answer options, developed to evaluate the grieving process: Inventory of Grief and Coping Strategies in Intellectual Disability (IGCS-ID). The IGCS-ID shows adequate levels of reliability. It covers three dimensions: understanding of the concept of death, coping with the loss and post-bereavement reactions. The level of intellectual disability, the time elapsed since the loss and the residential setting gave rise to significant differences in the three dimensions based on the participants. An assessment of the grieving process would help to put in place effective resources to help people with intellectual disability overcome the loss and cope with the changes that it brings. © 2018 John Wiley & Sons Ltd.

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

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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.

Sibling Relationships in Adolescence and Early Adulthood With People Who Have Intellectual Disability.

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Floyd, Frank J; Costigan, Catherine L; Richardson, Shana S

2016-09-01

Cross-sectional (N = 106) and longitudinal (N = 35) samples of siblings (ages 11-38) reported on closeness and conflict in their relationships with sisters and brothers with intellectual disability. For closeness, confirmatory factor analysis (CFA) distinguished feelings of emotional closeness from reciprocal sharing behaviors for these siblings. Age effects and changes over time indicated increasing emotional closeness and a general reduction in conflict from adolescence to young adulthood, with stable reciprocal sharing. Cross-sectionally, closeness was greater when siblings were involved in caregiving, and conflict was less when siblings no longer co-resided. Sibling constellation features (sex, birth order, age spacing) had limited effects at this developmental period. Findings support a combination of life-span developmental change and enduring attachment in these sibling relationships.

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

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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…

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

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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.

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

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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.

Exploring the self-concepts of persons with intellectual disabilities.

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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.

LEARNING PROBLEMS IN CHILDREN WITH MILD INTELLECTUAL DISABILITY

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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.

Organising healthcare services for persons with an intellectual disability.

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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

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…

Perceived social acceptance, theory of mind and social adjustment in children with intellectual disabilities.

Science.gov (United States)

Fiasse, Catherine; Nader-Grosbois, Nathalie

2012-01-01

Perceived social acceptance, theory of mind (ToM) and social adjustment were investigated in 45 children with intellectual disabilities (ID) compared with 45 typically developing (TD) preschoolers, matched for developmental age assessed by means of the Differential Scales of Intellectual Efficiency-Revised edition (EDEI-R, Perron-Borelli, 1996). Children's understanding of beliefs and emotions was assessed by means of ToM belief tasks (Nader-Grosbois & Thirion-Marissiaux, 2011) and ToM emotion tasks (Nader-Grosbois & Thirion-Marissiaux, 2011). Seven items from the Pictorial Scale of Perceived Competence and Social Acceptance for children (PSPCSA, Harter & Pike, 1980) assessed children's perceived social acceptance. Their teachers completed the Social Adjustment for Children Scale (EASE, Hughes, Soares-Boucaud, Hochmann, & Frith, 1997). For both groups together, the results showed that perceived social acceptance mediates the relation between ToM skills and social adjustment. The presence or absence of intellectual disabilities does not moderate the relations either between ToM skills and perceived social acceptance, or between perceived social acceptance and social adjustment. The study did not confirm the difference hypothesis of structural and relational patterns between these three processes in children with ID, but instead supported the hypothesis of a similar structure that develops in a delayed manner. Copyright © 2012 Elsevier Ltd. All rights reserved.

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...

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

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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

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.

Family perceptions of intellectual disability: Understanding and support in Dar es Salaam

Science.gov (United States)

2012-01-01

When attempting to understand the construct of intellectual disability in different contexts, speaking to family members in addition to the individual with the disability may provide new insight about understandings of and responses to intellectual disability in society and may help to identify the forms of support that are available or needed to ensure the quality of life of people with disabilities. This article outlines and discusses interviews that were conducted in Dar es Salaam, Tanzania, with family members of children and adults with intellectual disabilities. These interviews explore how families came to understand that their child had an intellectual disability; the availability of family support; and family hopes and dreams for the future, and were a part of a wider exploratory study that gathered insight from individuals with disabilities, families, and other providers of support to explore understandings and perceptions of disability in Dar es Salaam. Understanding family experiences will help researchers, policy makers, non-governmental organisations, and others to identify family strengths and family support needs which can ultimately improve family quality of life and the quality of life of the member with a disability. PMID:28729979

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.

A Systematic Review of Suicidality in People with Intellectual Disabilities.

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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.

Young People with Intellectual Disability Transitioning to Adulthood: Do Behaviour Trajectories Differ in Those with and without Down Syndrome?

Science.gov (United States)

Foley, Kitty-Rose; Taffe, John; Bourke, Jenny; Einfeld, Stewart L.; Tonge, Bruce J.; Trollor, Julian; Leonard, Helen

2016-01-01

Background Young people with intellectual disability exhibit substantial and persistent problem behaviours compared with their non-disabled peers. The aim of this study was to compare changes in emotional and behavioural problems for young people with intellectual disability with and without Down syndrome as they transition into adulthood in two different Australian cohorts. Methods Emotional and behavioural problems were measured over three time points using the Developmental Behaviour Checklist (DBC) for those with Down syndrome (n = 323 at wave one) and compared to those with intellectual disability of another cause (n = 466 at wave one). Outcome scores were modelled using random effects regression as linear functions of age, Down syndrome status, ability to speak and gender. Results DBC scores of those with Down syndrome were lower than those of people without Down syndrome indicating fewer behavioural problems on all scales except communication disturbance. For both groups disruptive, communication disturbance, anxiety and self-absorbed DBC subscales all declined on average over time. There were two important differences between changes in behaviours for these two cohorts. Depressive symptoms did not significantly decline for those with Down syndrome compared to those without Down syndrome. The trajectory of the social relating behaviours subscale differed between these two cohorts, where those with Down syndrome remained relatively steady and, for those with intellectual disability from another cause, the behaviours increased over time. Conclusions These results have implications for needed supports and opportunities for engagement in society to buffer against these emotional and behavioural challenges. PMID:27391326

Social workers' attributions towards individuals with dual diagnosis of intellectual disability and mental illness.

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Araten-Bergman, T; Werner, S

2017-02-01

The present study aimed to explore the applicability of the attribution model to social workers' attributions towards clients with dual diagnosis of intellectual disability and psychiatric illness. Specifically, the study examined the relations between social workers' attribution of responsibility, causality, stereotypes of dangerousness, their emotional reactions and behavioural reactions towards clients with dual diagnosis. Social workers (N = 279) completed questionnaires measuring attributions of responsibility, causation and dangerousness, and reported on their emotional and behavioural reactions to clients diagnosed with DD. Most social workers reported high levels of helping behaviours. The strongest predictor of discriminatory behaviours was the stereotype of dangerousness. Social workers who reported feeling less anger and more pity towards clients with DD tended to report higher levels of helping behaviour. But contrary to attribution theory, fear and anger did not predict discriminatory behaviours. The results are discussed in relation to the core values of social work and to professional identity. © 2016 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

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

Science.gov (United States)

Tuffrey-Wijne, I; Rose, T

2017-08-01

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

A novel mutation in PGAP2 gene causes developmental delay, intellectual disability, epilepsy and microcephaly in consanguineous Saudi family.

Science.gov (United States)

Naseer, Muhammad Imran; Rasool, Mahmood; Jan, Mohammed M; Chaudhary, Adeel G; Pushparaj, Peter Natesan; Abuzenadah, Adel M; Al-Qahtani, Mohammad H

2016-12-15

PGAP2 (Post-GPI Attachment to Proteins 2) gene is involved in lipid remodeling steps of Glycosylphosphatidylinositol (GPI)-anchor maturation. At the surface of the cell this gene is required for proper expression of GPI-anchored proteins. Hyperphosphatasia with mental retardation syndrome-3 is an autosomal recessive disorder usually characterized by severe mental retardation. Mutations in the PGAP2 gene cause hyperphosphatasia mental retardation syndrome-3. We have identified a large consanguineous family from Saudi origin segregating developmental delay, intellectual disability, epilepsy and microcephaly. Whole exome sequencing with 100× coverage was performed on two affected siblings of the family. Data analysis in the patient revealed a novel missense mutation c.191C>T in PGAP2 gene resulting in Alanine to Valine substitution (Ala64Val). The mutation was reconfirmed and validated by subsequent Sanger sequencing method. The mutation was ruled out in 100 unrelated healthy controls. We suggest that this pathogenic mutation disrupts the proper function of the gene proteins resulting in the disease state. Copyright © 2016 Elsevier B.V. All rights reserved.

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

Science.gov (United States)

Cleary, Josephine; Doody, Owen

2017-03-01

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

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.

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

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

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.

Analysis of Intellectual Disability Copy Number Variants for Association With Schizophrenia.

Science.gov (United States)

Rees, Elliott; Kendall, Kimberley; Pardiñas, Antonio F; Legge, Sophie E; Pocklington, Andrew; Escott-Price, Valentina; MacCabe, James H; Collier, David A; Holmans, Peter; O'Donovan, Michael C; Owen, Michael J; Walters, James T R; Kirov, George

2016-09-01

At least 11 rare copy number variants (CNVs) have been shown to be major risk factors for schizophrenia (SZ). These CNVs also increase the risk for other neurodevelopmental disorders, such as intellectual disability. It is possible that additional intellectual disability-associated CNVs increase the risk for SZ but have not yet been implicated in SZ because of previous studies being underpowered. To examine whether additional CNVs implicated in intellectual disability represent novel SZ risk loci. We used single-nucleotide polymorphism (SNP) array data to evaluate a set of 51 CNVs implicated in intellectual disability (excluding the known SZ loci) in a large data set of patients with SZ and healthy persons serving as controls recruited in a variety of settings. We analyzed a new sample of 6934 individuals with SZ and 8751 controls and combined those data with previously published large data sets for a total of 20 403 cases of SZ and 26 628 controls. Burden analysis of CNVs implicated in intellectual disability (excluding known SZ CNVs) for association with SZ. Association of individual intellectual disability CNV loci with SZ. Of data on the 20 403 cases (6151 [30.15%] female) and 26 628 controls (14 252 [53.52%] female), 51 intellectual disability CNVs were analyzed. Collectively, intellectual disability CNVs were significantly enriched for SZ (P = 1.0 × 10-6; odds ratio [OR], 1.9 [95% CI, 1.46-2.49]). Of the 51 CNVs tested, 19 (37%) were more common in SZ cases; only 4 (8%) were more common in controls (no observations were made for the remaining 28 [55%] loci). One novel locus, deletion at 16p12.1, was significantly associated with SZ after correction for multiple testing (rate in SZ, 33 [0.16%]; rate in controls, 12 [0.05%]; corrected P = .017; OR, 3.3; 95% CI, 1.61-7.05), and 2 loci reached nominal levels of significance (deletions at 2q11.2: 6 [0.03%] vs 1 [0.004%]; OR, 9.3; 95% CI, 1.03-447.76; corrected P > .99; and duplications

The State of the Science of Employment and Economic Self-Sufficiency for People with Intellectual and Developmental Disabilities

Science.gov (United States)

Nord, Derek; Luecking, Richard; Mank, David; Kiernan, William; Wray, Christina

2013-01-01

Employment, career advancement, and financial independence are highly valued in the United States. As expectations, they are often instilled at a young age and incentivized throughout adulthood. Despite their importance, employment and economic sufficiency continue to be out of reach for most people with intellectual and developmental disabilities…

Understanding Sources of Knowledge for Coaches of Athletes with Intellectual Disabilities

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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…

The effectiveness of Stepping stones Triple P: the design of a randomised controlled trial on a parenting programme regarding children with mild intellectual disability and psychosocial problems versus care as usual

OpenAIRE

Kleefman, Marijke; Jansen, Daniëlle EMC; Reijneveld, Sijmen A

2011-01-01

Abstract Background Children with an intellectual disability are at increased risk of psychosocial problems. This leads to serious restrictions in the daily functioning of the children and to parental stress. Stepping Stones Triple P aims to prevent severe behavioural, emotional and developmental problems in children with a (intellectual) disability by enhancing parenting knowledge and skills, and the self-confidence of parents. This paper aims to describe the design of a study of the effecti...

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.

Prevalence of Overweight and Obesity in Children with Intellectual Disabilities in Korea

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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:…

Wildcard: A wearable virtual reality storytelling tool for children with intellectual developmental disability.

Science.gov (United States)

Gelsomini, Mirko; Garzotto, Franca; Montesano, Daniele; Occhiuto, Daniele

2016-08-01

Our research aims at supporting existing therapies for children with intellectual and developmental disorders (IDD). The personal and social autonomy is the desired end state to be achieved to enable a smooth integration in the real world. We developed and tested a framework for storytelling and learning activities that exploits an immersive virtual reality viewer to interact with target users. We co-designed our system with experts from the medical sector, identifying features that allow patients to stay focused on exercises to perform. Our approach triggers a learning process for a seamless assimilation of common behavioral skills useful in every day's life. This paper highlights the technologic challenges in healthcare and discusses cutting-edge interaction paradigms.

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.

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. ...

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

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…

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…

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.…

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.

Comparing the functional performance of children and youths with autism, developmental disabilities, and no disability using the revised pediatric evaluation of disability inventory item banks.

Science.gov (United States)

Kao, Ying-Chia; Kramer, Jessica M; Liljenquist, Kendra; Tian, Feng; Coster, Wendy J

2012-01-01

OBJECTIVE. We compared the functional performance of children with autism spectrum disorders (ASD), intellectual and developmental disabilities (IDD), and without disabilities using the revised Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT) Social/Cognitive, Daily Activities, and Responsibility domains. METHOD. A nationally representative sample of parents of children ages 0-21 without disabilities (n = 2,205), with ASD (n = 108), or with IDD (n = 150) completed an online survey. We obtained predicted PEDI-CAT scaled scores for three reference ages (5, 10, 15) from a modified analysis of covariance model and compared each group's scores using contrasts of the regression parameters. RESULTS. We found no significant differences between the ASD and IDD groups. The group with ASD demonstrated significantly lower performance than the group without disabilities across the three domains at ages 10 and 15. CONCLUSION. Scores on the PEDI-CAT differentiated the group with ASD from the group without disabilities. Children with ASD and IDD did not demonstrate different performance profiles. Copyright © 2012 by the American Occupational Therapy Association, Inc.

Obesity in British children with and without intellectual disability: cohort study.

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Emerson, Eric; Robertson, Janet; Baines, Susannah; Hatton, Chris

2016-07-27

Reducing the prevalence of and inequities in the distribution of child obesity will require developing interventions that are sensitive to the situation of 'high risk' groups of children. Children with intellectual disability appear to be one such group. We aimed to estimate the prevalence of obesity in children with and without intellectual disability in a longitudinal representative sample of British children and identify risk factors associated with obesity at age 11. Information was collected on a nationally representative sample of over 18,000 at ages 9 months, 3, 5, 7 and 11 years. We used UK 1990 gender-specific growth reference charts and the LMS Growth programme to identify age and gender-specific overweight and obesity BMI thresholds for each child at ages 5, 7 and 11 years. Children with intellectual disabilities were significantly more likely than other children to be obese at ages five (OR = 1.32[1.03-1.68]), seven (OR = 1.39[1.05-1.83]) and eleven (OR = 1.68[1.39-2.03]). At ages five and seven increased risk of obesity among children with intellectual disabilities was only apparent among boys. Among children with intellectual disability risk of obesity at age eleven was associated with persistent maternal obesity, maternal education, child ethnicity and being bullied at age five. Children with intellectual disability are a high-risk group for the development of obesity, accounting for 5-6 % of all obese children. Interventions to reduce the prevalence and inequities in the distribution of child obesity will need to take account of the specific situation of this group of children.

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

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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

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

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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…

The Relationship between the Severity of Eating Problems and Intellectual Developmental Deficit Level

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Gal, Eynat; Hardal-Nasser, Reem; Engel-Yeger, Batya

2011-01-01

Nutrition, essential in the daily living functions promoting life quality of persons with intellectual developmental deficits (IDD), is adversely affected by the highly prevalent eating problems in these persons. The current study explores the characteristics of eating problems in population of children with intellectual developmental disorders.…

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

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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.

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

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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.

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...

A systematic literature review of the physical and psychosocial correlates of Special Olympics participation among individuals with intellectual disability.

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Tint, A; Thomson, K; Weiss, J A

2017-04-01

Special Olympics (SO) is commonly cited to play an important role in the lives of individuals with intellectual disabilities (ID). The purpose of the current review was to (a) synthesise key findings regarding the physical, psychological/emotional, social and/or intellectual/cognitive correlates of SO participation for individuals with ID and (b) highlight limitations in the extant research as well as directions for future research. A systematic review of electronic databases was undertaken. A total of 46 articles were confirmed to meet study criteria. Quality assessments of included studies were conducted using checklists from the Scottish Intercollegiate Guidelines Network methodology checklists (SIGN 50; SIGN 2008). There was a larger amount of support for physical, psychological/emotional and social outcomes as compared with cognitive/intellectual outcomes; however, many studies were confounded by measurement difficulties, sampling procedures and a lack of replicable methods, which hinder generalisation of results. This review highlights the need for a continued critical focus on SO programme evaluation research with more rigorous and replicable methods. © 2016 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

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

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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

“Intellectual developmental disorders”: reflections on the international consensus document for redefining “mental retardation-intellectual disability” in ICD-11

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Bertelli, Marco O.; Munir, Kerim; Harris, James; Salvador-Carulla, Luis

2016-01-01

Purpose The debate as to whether intellectual disability (ID) should be conceptualized as a health condition or as a disability has intensified as the revision of World Health Organization’s (WHO’s) International Classification of Diseases (ICD) is being finalized. Defining ID as a health condition is central to retaining it in ICD, with significant implications for health policy and access to health services. The purpose of this paper is to include some reflections on the consensus document produced by the first WHO Working Group on the Classification of MR (WHO WG-MR) and on the process that was followed to realize it. The consensus report was the basis for the development of official recommendations sent to the WHO Advisory Group for ICD-11. Design/methodology/approach A mixed qualitative approach was followed in a series of meetings leading to the final consensus report submitted to the WHO Advisory group. These recommendations combined prior expert knowledge with available evidence; a nominal approach was followed throughout with face-to-face conferences. Findings The WG recommended a synonym set (“synset”) ontological approach to the conceptualisation of this health condition underlying a clinical rationale for its diagnosis. It proposed replacing MR with Intellectual Developmental Disorders (IDD) in ICD-11, defined as “a group of developmental conditions characterized by a significant impairment of cognitive functions, which are associated with limitations of learning, adaptive behaviour and skills”. The WG further advised that IDD be included under the parent category of neurodevelopmental disorders, that current distinctions (mild, moderate, severe and profound) be continued as severity qualifiers, and that problem behaviours removed from its core classification structure and instead described as associated features. Originality/value Within the ID/IDD synset two different names combine distinct aspects under a single construct that describes

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

Social Inclusion and People with Intellectual Disability and Challenging Behaviour: A Systematic Review

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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…

Family-Peer Linkages for Children with Intellectual Disability and Children with Learning Disabilities.

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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.

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

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

2017-12-13

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

45 CFR 1385.4 - Rights of individuals with developmental disabilities.

Science.gov (United States)

2010-10-01

... university affiliated programs or for projects of national significance grants must also contain an assurance... DISABILITIES, DEVELOPMENTAL DISABILITIES PROGRAM REQUIREMENTS APPLICABLE TO THE DEVELOPMENTAL DISABILITIES PROGRAM § 1385.4 Rights of individuals with developmental disabilities. (a) Section 110 of the Act, Rights...

Distinguishing subtypes of extrinsic motivation among people with mild to borderline intellectual disability.

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Frielink, N; Schuengel, C; Embregts, P

2017-07-01

According to self-determination theory, motivation is ordered in types, including amotivation, extrinsic motivation and intrinsic motivation. Self-determination theory defines four subtypes of extrinsic motivation: external motivation, introjected motivation, identified motivation and integrated motivation. Although it has been argued theoretically that the different types of motivation are universally applicable, Reid et al. () proposed a dichotomy of broad subtypes of extrinsic motivation for people with intellectual disability (ID) due to their cognitive limitations. The current study challenges this proposal by testing whether the four subtypes of extrinsic motivation can be differentiated among people with ID as well. The subtypes of extrinsic motivation were measured using two adapted versions of the Self-Regulation Questionnaire, one regarding exercise and one regarding support. In total, 186 adults with mild to borderline ID participated in the study. Results supported the distinction between the four subtypes of extrinsic motivation regarding both exercise and support. In addition, the correlation coefficients supported a quasi-simplex pattern of correlations among the subtypes, indicating that adjacent subtypes were more closely related than non-adjacent subtypes. Moreover, the study showed sufficient Cronbach's alphas and test-retest reliabilities for early stage research. Overall, the results of the current study provide initial evidence for the universality of the four subtypes of extrinsic motivation across populations with and without ID. © 2017 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd.

Therapeutic and Ethical Dilemma of Puberty and Menstruation Problems in an Intellectually Disabled (Autistic) Female: a Case Report.

Science.gov (United States)

Memarian, Azadeh; Mehrpisheh, Shahrokh

2015-10-01

Intellectual disability is a term used when a person has certain limitations in mental functioning and skills. Autism is a group of developmental brain disorders, collectively called autism spectrum disorder (ASD). Teenagers with learning and physical disabilities are more likely to have menstrual problems compared to the general populations. The parents of a 12-year-old girl with autism spectrum disorder and intellectual disability referred to the coroner due to her numerous problems of puberty (menstruation) including: poor hygiene and polluting herself and the environment, not allowing to put or change the pads and changes in mood and physical health prior period, requested for the surgery (hysterectomy). In legal medicine organization after reviewing the medical records, physical exams and medical consultations with a gynecologist and psychiatric, surgery was not accepted. Hysterectomy (surgery) due to the age of the child, either physically or morally is not recommended. The use of hormone replacement therapy has side effects such as osteoporosis. In these cases, it seems noninvasive methods (behavioral therapy and learning care skills) under the welfare experts is also more effective and morally.

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

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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.

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.

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...

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.

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

Modeling contextual influences on parents with intellectual disability and their children.

Science.gov (United States)

Wade, Catherine; Llewellyn, Gwynnyth; Matthews, Jan

2011-11-01

Many parents with intellectual disability experience living conditions associated with risk for children and parents. This study used structural equation modeling to test a theoretical model of the relationships among parent, child, family, and contextual variables in 120 Australian families where a parent had an intellectual disability. Findings revealed that parenting practices had a direct effect on children's well being, that social support was associated with children's well being through the mediator of parenting practices, and that access to social support had a direct influence on parenting practices. Implications of the findings for research, intervention, and policy are explored, with the goal of promoting optimal well being for children who are raised by parents with intellectual disability.

Food on Film: Pilot Test of an Innovative Method for Recording Food Intake of Adults with Intellectual Disabilities Living in the Community

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Humphries, Kathleen; Traci, Meg Ann; Seekins, Tom

2008-01-01

Background: Adults with intellectual or developmental disabilities need dietary monitoring but are not likely to be able to provide accurate dietary intake data via traditional methods. Pilot study efforts to meet their support needs with a novel and practical approach to dietary intake data collection are described in this brief report. Materials…

Effects of School Staff Communication on Initiations and Repair Strategies of Students with Severe Intellectual and Developmental Disabilities

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Hetzroni, Orit E.; Shalev, Maayan

2017-01-01

The study examined the effects of the types of communication breakdowns of the communication partners on the repair strategies of students with severe intellectual disability during interaction within the natural school environment. Forty-eight staff members, divided into two groups based on daily vs. weekly contact with the student, and 12…

BELIEFS OF TEACHERS ABOUT BEHAVIOR PROBLEMS IN STUDENTS WITH INTELLECTUAL DISABILITIES

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A. L. Gavia P.

2013-09-01

Full Text Available Hermeneutic research study conducted with seventeen primary regular and special education teachers to examine their beliefs about intellectual disabilities and behavior problems. Teachers beliefs about the influence that the context has the proliferation of conduct and disability issues is unveiled. It is an approach to the theoretical reference from beliefs, teachers in regular and special education, they have in common that their beliefs about intellectual disabilities are circumscribed or based on his work experience, rather than in references up-to-date intellectual disability. On the other hand found that teachers, based their beliefs on behavioural problems in the characteristics that have been observed through the experience with his students. Finally the strategies and style for setting the order were also based on their beliefs, elementary and special education teachers were using corrective strategies, although the latter also used cognitive strategies.

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.

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....

Characteristics, etiology and assessment of sexual offending in persons with intellectual disability

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Tomić Katarina

2017-01-01

Full Text Available The paper presents an overview of the studies dealing with the etiology, types and clinical expression of sexual offending in people with intellectual disability, with a brief overview of some of the methods and techniques of structured assessment of deviant sexual behavior. A review of possible etiological factors provides an overview of the static and dynamic risks factors of sexual offending and recidivism. The results indicate an increased incidence of sexual offending in people with intellectual disability compared to those of a typical development. The most important risk factors for the manifestation of deviant sexual behavior include: early victimization, misunderstanding of social rules and restrictions, poor impulse inhibition, behavioral and emotional dysregulation and some neurobiological factors associated with genetic syndromes. People with intellectual disabilities usually choose other people with disabilities, as well as children, for victims of sexual offences. The results of the presented research point to the importance of continuous sexual education of people with intellectual disability and preventive action in order to mitigate the well known risk factors for expressing sexually deviant behavior.

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…

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…

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

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…

PHYSICAL AND SPORT ACTIVITIES OF INTELLECTUALLY DISABLED INDIVIDUALS

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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.

Obesity, Nutrition, and Physical Activity for People with Significant Disabilities

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Grumstrup, Brianna; Demchak, MaryAnn

2017-01-01

This review of literature focuses on health issues for individuals with Intellectual Disabilities (ID), Intellectual and Developmental Disabilities (IDD), and Multiple Impairments (MI). This population has two to three times higher overweight and obesity prevalence than typically developing individuals. Furthermore, they have higher risk for…

The Perception of Substance Use Disorder among Clinicians, Caregivers and Family Members of Individuals with Intellectual and Developmental Disabilities

Science.gov (United States)

VanDerNagel, Joanne E. L.; van Duijvenbode, Neomi; Ruedrich, Stephen; Ayu, Astri P.; Schellekens, Arnt F. A.

2018-01-01

Introduction: Substance use disorders (SUD) are common among individuals with intellectual and developmental disorders (IDD). The quality of care individuals with these conditions receive can be affected by perceptions and attributions of SUD among clinicians, professional caregivers, and family members. The aim of this study was to explore such…

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…

Training of Child and Adolescent Psychiatry Fellows in Autism and Intellectual Disability

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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…

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

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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.

Intellectual disability health content within medical curriculum: an audit of what our future doctors are taught.

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Trollor, Julian N; Ruffell, Beth; Tracy, Jane; Torr, Jennifer J; Durvasula, Seeta; Iacono, Teresa; Eagleson, Claire; Lennox, Nicolas

2016-04-11

There is a high burden of unmet health needs for people with intellectual disability. Despite experiencing significantly higher rates of morbidity and mortality compared with the general population, this group faces greater barriers to accessing healthcare. While increasing workplace capacity is one way to reduce this inequitable access, previous research indicates a scarcity of undergraduate teaching in intellectual disability. The aim of the study was to determine the extent and nature of intellectual disability content currently offered within medical degree curricula. All Australian universities (n = 20) providing accredited medical training were invited to participate in a two-phase audit via an email invitation to the Dean of each medical school. The Dean's delegate from 14 medical schools completed Phase 1, which involved a questionnaire or telephone interview about the overall medical course structure. Unit coordinators and/or teaching staff from 12 medical schools completed Phase 2, which involved an online survey about intellectual disability content within the curriculum. In Australia, medical school curricula contain a median of 2.55 h of compulsory intellectual disability content. The majority of universities only offer a small amount of compulsory content. Of compulsory units, intellectual disability teaching is minimal in sexual health and emergency medicine (only one unit offered in one school for each). Topics of key relevance in intellectual disability health such as human rights issues, interdisciplinary team work and preventative health are poorly represented in intellectual disability teaching. Elective content varies markedly across universities (1 to 122 h), but emergency medicine, women's health, men's health and many other specialist medicine areas are not represented. Inclusive practice is inconsistent in degree and nature, but a majority of universities (nine) involve people with intellectual disability in the development or delivery

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

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Fulford, Casey; Cobigo, Virginie

2018-01-01

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

Feasibility of the Participatory Experience Survey and the Setting Affordances Survey for use in evaluation of programmes serving youth with intellectual and developmental disabilities.

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Liljenquist, K; Coster, W; Kramer, J; Rossetti, Z

2017-07-01

Participation by youth with disabilities in recreational activities has been shown to promote the development of important skills needed for transition to adulthood. The Participatory Experience Survey (PES) and the Setting Affordances Survey (SAS) were developed for use by recreational programmes serving youth with significant intellectual and developmental disabilities (SIDD) to assess participant experiences and ensure that participants are afforded optimal opportunities to develop these skills. This paper presents a feasibility evaluation to determine the appropriateness of the PES and the SAS for use in a programme evaluation context. The PES and the SAS were used to evaluate a programme serving youth with SIDD in the greater northwest region of the United States. Three recreational activities were evaluated: an art project, trip to a zoo and a track practice. Programme volunteers used the SAS to assess opportunities and affordances offered within each activity. The PES was then given to 10 young people in each activity to capture their experiences. It was hypothesized that each setting would afford different experiences and developmental opportunities because of the differing nature of the activities. The PES and SAS were found to be feasible for conducting a programme evaluation. All three settings offered varying types of experiences and affordances. Notably, as measured by the SAS, opportunity for skill development was greater in more structured activities; the zoo had the fewest opportunities for skill development and the art project had the most skill development opportunities. Youth answered 'no' most often to 'asking for help' and 'helping a kid', suggesting changes to offer more opportunities to develop these skills would be beneficial in all three activities. These new instruments offer programmes a means to more fully include young people with disabilities during programme evaluations, leading to better-structured, more supportive programmes. �

Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions.

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Vohra, Rini; Madhavan, Suresh; Sambamoorthi, Usha; St Peter, Claire

2014-10-01

This cross-sectional study examined perceived access to services, quality of care, and family impact reported by caregivers of children aged 3-17 years with autism spectrum disorders, as compared to caregivers of children with other developmental disabilities and other mental health conditions. The 2009-2010 National Survey of Children with Special Health Care Needs was utilized to examine the association between child's special needs condition and three outcomes (N = 18,136): access to services (difficulty using services, difficulty getting referrals, lack of source of care, and inadequate insurance coverage), quality of care (lack of care coordination, lack of shared decision making, and no routine screening), and family impact (financial, employment, and time-related burden). Multivariate logistic regressions were performed to compare caregivers of children with autism spectrum disorders to caregivers of children with developmental disabilities (cerebral palsy, Down syndrome, developmental delay, or intellectual disability), mental health conditions (attention deficit hyperactivity disorder, anxiety, behavioral/conduct problems, or depression), or both developmental disabilities and mental health conditions. Caregivers of children with autism spectrum disorders were significantly more likely to report difficulty using services, lack of source of care, inadequate insurance coverage, lack of shared decision making and care coordination, and adverse family impact as compared to caregivers of children with developmental disabilities, mental health conditions, or both. © The Author(s) 2013.