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…
Maenner, Matthew J; Smith, Leann E; Hong, Jinkuk; Makuch, Renee; Greenberg, Jan S; Mailick, Marsha R
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
MacDonald, Megan; Ross, Samantha; McIntyre, Laura Lee; Tepfer, Amanda
Young children with developmental disabilities experience known deficits in salient child behaviors, such as social behaviors, communication, and aspects of daily living, behaviors that generally improve with chronological age. The purpose of this study was to examine the mediating effects of motor skills on relations of age and salient child behaviors in a group of young children with developmental disabilities, thus tapping into the potential influences of motor skills in the development of salient child behaviors. One hundred thirteen young children with developmental disabilities participated in this study. Independent mediation analysis, with gender as a moderator between the mediating and outcome variable, indicated that motor skills meditated relations between age and socialization, communication, and daily living skills in young male children with developmental disabilities, but not female participants. Findings suggest motor skill content needs to be considered in combination with other child behaviors commonly focused on in early intervention.
Hall, Sarah A; Rossetti, Zach
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.
... blindness. They may affect mental ability, such as learning disorders. Or the problem can be both physical and mental, such as Down syndrome. The problems are usually life-long, and can affect everyday living. There are ...
Njelesani, Janet; Leckie, Karen; Drummond, Jennifer; Cameron, Deb
Parents have a strong influence on their child's engagement in physical activities, especially for children with developmental disabilities, as these children are less likely to initiate physical activity. Knowledge is limited regarding parents' perceptions of this phenomenon in low- and middle-income countries (LMICs); yet many rehabilitation providers work with children with developmental disabilities and their parents in these contexts. The aim of this study was to explore the barriers perceived by parents of children with developmental disabilities to their children's engagement in physical activity. An occupational perspective was used to explore how parents speak about barriers to their child's engagement in physical activity. Interviews were conducted with nine parents in Port-of-Spain, Trinidad and Tobago. Parent's perceived barriers were categorized into four themes: family priorities, not an option in our environment, need to match the activity to the child's ability, and need for specialized supports. FINDINGS provide opportunities for future rehabilitation and community programming in LMICs. Implications for Rehabilitation Children living with a developmental disability may engage more in solitary and sedentary pursuits as a result of parents choosing activities that do not present extensive social and physical demands for their child. Therapists can play an important role in providing knowledge to parents of appropriate physical activity and the benefits of physical activity for children with developmental disabilities in order to promote children's participation. In environments where there is limited social support for families, therapists need to consider and be particularly supportive of parental priorities and schedules.
... play, learn, speak, behave, and move (for example, crawling and walking). Children develop at their own pace, ... person’s lifetime. Most developmental disabilities begin before a baby is born, but some can happen after birth ...
Reindl, Marie-Sol; Waltz, Mitzi; Schippers, Alice
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,…
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.
... About CDC.gov . Disability & Health Home Disability Overview Disability Inclusion Barriers to Inclusion Inclusion Strategies Inclusion in Programs & Activities Resources Healthy Living Disability & Physical Activity Disability & Obesity Disability & Smoking Disability & Breast ...
Reindl, Marie-Sol; Waltz, Mitzi; Schippers, Alice
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.
Jespersen, Louise Norman; Michelsen, Susan Ishøy; Tjørnhøj-thomsen, Tine
highlighted as affecting quality of life. The use of social tactics to avoid confrontation with certain aspects of their disability was common among participants. Conclusions: Across disabilities, caregiving, dependency, understanding and acceptance, and discrimination and prejudice were all important aspects......Purpose: We explored which shared aspects of social relations were considered important to the quality of life of persons between the ages of 10 and 40 years living with a disability. We examined how social relations were experienced as affecting quality of life and social participation. Materials...... and methods: Fifteen focus groups involving 48 persons with disabilities were conducted using photo elicitation, preference ranking and props. Focus group interviews were supplemented with seven individual interviews with individuals unable to participate in focus groups. All focus group interviews...
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.
Spiel, G; Brunner, E; Allmayer, B; Pletz, A
Speech disabilities (articulation deficits) and language disorders--expressive (vocabulary) receptive (language comprehension) are not uncommon in children. An overview of these along with a global description of the impairment of communication as well as clinical characteristics of language developmental disorders are presented in this article. The diagnostic tables, which are applied in the European and Anglo-American speech areas, ICD-10 and DSM-IV, have been explained and compared. Because of their strengths and weaknesses an alternative classification of language and speech developmental disorders is proposed, which allows a differentiation between expressive and receptive language capabilities with regard to the semantic and the morphological/syntax domains. Prevalence and comorbidity rates, psychosocial influences, biological factors and the biological social interaction have been discussed. The necessity of the use of standardized examinations is emphasised. General logopaedic treatment paradigms, specific therapy concepts and an overview of prognosis have been described.
Health Information Infrastructure for People with Intellectual and Developmental Disabilities (I/DD) Living in Supported Accommodation: Communication, Co-Ordination and Integration of Health Information.
Dahm, Maria R; Georgiou, Andrew; Balandin, Susan; Hill, Sophie; Hemsley, Bronwyn
People with intellectual and/or developmental disability (I/DD) commonly have complex health care needs, but little is known about how their health information is managed in supported accommodation, and across health services providers. This study aimed to describe the current health information infrastructure (i.e., how data and information are collected, stored, communicated, and used) for people with I/DD living in supported accommodation in Australia. It involved a scoping review and synthesis of research, policies, and health documents relevant in this setting. Iterative database and hand searches were conducted across peer-reviewed articles internationally in English and grey literature in Australia (New South Wales) up to September 2015. Data were extracted from the selected relevant literature and analyzed for content themes. Expert stakeholders were consulted to verify the authors' interpretations of the information and content categories. The included 286 sources (peer-reviewed n = 27; grey literature n = 259) reflect that the health information for people with I/DD in supported accommodation is poorly communicated, coordinated and integrated across isolated systems. 'Work-as-imagined' as outlined in policies, does not align with 'work-as-done' in reality. This gap threatens the quality of care and safety of people with I/DD in these settings. The effectiveness of the health information infrastructure and services for people with I/DD can be improved by integrating the information sources and placing people with I/DD and their supporters at the centre of the information exchange process.
The co-occurrence of epilepsy in people with intellectual disabilities (ID) and other developmental disabilities (DD) has received attention because it has a significant negative impact on health, well-being, and quality of life. The current research investigating the frequency and form of epilepsy in children with ID and DD is reviewed, with…
Burke, Meghan M; Taylor, Julie Lounds; Urbano, Richard; Hodapp, Robert M
With the growing life expectancy for individuals with intellectual and developmental disabilities, siblings will increasingly assume responsibility for the care of their brother or sister with intellectual and developmental disabilities. Using a 163-item survey completed by 757 siblings, the authors identified factors related to future caregiving expectations. Siblings expected to assume greater caregiving responsibility for their brother or sister with disabilities if they were female, had closer relationships with and lived closer to their brother or sister with intellectual and developmental disabilities, and were the lone sibling without a disability. Siblings who expected to assume higher levels of caregiving had parents who were currently more able to care for their brother or sister with disabilities. With a better understanding of who intends to fulfill future caregiving roles, support can be provided to these siblings.
Hattier, Megan A.; Matson, Johnny L.; Sipes, Megan; Turygin, Nicole
Research that focuses on detecting and assessing the presence of communication impairments in children with developmental disabilities exists. However, more research is needed which compares these deficits across individuals with various developmental disabilities. This information could inform the assessment process and treatment programs.…
Arnold, Catherine K.; Heller, Tamar; Kramer, John
This qualitative study examines the support needs of adult siblings of people with developmental disabilities. A survey completed by 139 siblings of people with developmental disabilities captured the needs of adult siblings through 2 open-ended questions. A grounded theory approach was used, and the sibling responses anchored the analysis,…
Ferguson, Fred S.; And Others
In 1980, the State University of New York at Stony Brook began a program, integrated into the program of children's dentistry, to train students in care for the developmentally disabled. Management of developmentally disabled patients is provided over three years, and represents an extension of pediatric behavior management. (MSE)
Andersen, Richard D.
The nature of chronic infections in developmentally disabled children is reviewed, along with appropriate management strategies for care providers and implications for other children. Discussed are herpes simplex virus, cytomegalovirus, hepatitis B virus, and human immunodeficiency virus. (Author/JDD)
Kastner, Theodore; And Others
A public health approach was used to eliminate pinworm from a system of community residential settings for individuals with developmental disabilities. The approach involved screening and treatment of staff members and clients living and working in close proximity to index cases, and prophylactically treating many clients and staff based on…
Problem Statement: Because communication skills, particularly pragmatic skills, are fundamental for living an independent life in society, these skills are vital to the quality of life of individuals with developmental disabilities (DD) and their families. Studies of the pragmatic skills of individuals with DD can provide important insights into…
Matson, Johnny L.; LoVullo, Santino V.
Children and adults with developmental disabilities are more likely to evince encopresis, soiling and constipation than the general population. This set of related behaviors can produce a great deal of stress and can be a major restriction in independent living. This paper provides a review of the current state of knowledge on the prevalence,…
Depositario-Cabacar, Dewi Frances T.; Zelleke, Tesfaye-Getaneh
Children with developmental disabilities are at increased risk for epilepsy with a prevalence rate higher than the general population. Some of the more common developmental disorders in childhood and the features of epilepsy in these conditions are discussed. Specifically, autism, cerebral palsy, mental retardation, and attention deficit and…
Full Text Available Abstract Flatworm embryology has attracted attention since the early beginnings of comparative evolutionary biology. Considered for a long time the most basal bilaterians, the Platyhelminthes (excluding Acoelomorpha are now robustly placed within the Spiralia. Despite having lost their relevance to explain the transition from radially to bilaterally symmetrical animals, the study of flatworm embryology is still of great importance to understand the diversification of bilaterians and of developmental mechanisms. Flatworms are acoelomate organisms generally with a simple centralized nervous system, a blind gut, and lacking a circulatory organ, a skeleton and a respiratory system other than the epidermis. Regeneration and asexual reproduction, based on a totipotent neoblast stem cell system, are broadly present among different groups of flatworms. While some more basally branching groups - such as polyclad flatworms - retain the ancestral quartet spiral cleavage pattern, most flatworms have significantly diverged from this pattern and exhibit unique strategies to specify the common adult body plan. Most free-living flatworms (i.e. Platyhelminthes excluding the parasitic Neodermata are directly developing, whereas in polyclads, also indirect developers with an intermediate free-living larval stage and subsequent metamorphosis are found. A comparative study of developmental diversity may help understanding major questions in evolutionary biology, such as the evolution of cleavage patterns, gastrulation and axial specification, the evolution of larval types, and the diversification and specialization of organ systems. In this review, we present a thorough overview of the embryonic development of the different groups of free-living (turbellarian platyhelminths, including the Catenulida, Macrostomorpha, Polycladida, Lecithoepitheliata, Proseriata, Bothrioplanida, Rhabdocoela, Fecampiida, Prolecithophora and Tricladida, and discuss their main features
DeVeney, Shari L.; Hoffman, Lesa; Cress, Cynthia J.
Purpose: In this study, the authors compared a multiple-domain strategy for assessing developmental age of young children with developmental disabilities who were at risk for long-term reliance on augmentative and alternative communication (AAC) with a communication-based strategy composed of receptive language and communication indices that may…
... 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...
Kao, B; Romero-Bosch, L; Plante, W; Lobato, D
This qualitative study explored the experiences of Latino siblings of children with developmental disabilities. Parents and typically developing siblings from 15 Latino families with a child with a developmental disability participated in separate interviews. Using consensual qualitative research methodology, domains reflecting siblings' relationships, emotional experiences and communication about the disability were identified. The child's need for caregiving was a prominent topic in the sibling and parent narratives. Parents reported concerns about siblings' experience of differential treatment, whereas siblings reported concerns about restricted social activities because of their brother/sister. Including multiple informants revealed commonalities and differences in parents' and siblings' perspectives on the impact of a child's disability. The importance of considering sibling adaptation in sociocultural context is discussed. © 2011 Blackwell Publishing Ltd.
Burke, Meghan; Arnold, Catherine; Owen, Aleksa
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…
Kim, Eunha; Hwang, Jowon; Park, Sukyoung
This study examined how child problem behaviour could be related to maternal Hwa-Byung (HB; Korean culture syndrome, meaning "anger illness") among Korean mothers of children with developmental disabilities. Acceptance of disabilities and parenting stress were tested as mediators for the relationship between child problem behaviour and…
Tadić, V; Hundt, G Lewando; Keeley, S; Rahi, J S
Although the significant impact of visual disability in childhood has been widely recognized, children's own perspectives of living with a visual impairment have not been considered. We report the experiences of visually impaired (VI) children and young people aged 10-15 years about growing up with impaired sight. The participants were 32 VI children and young people, aged 10-15 years [visual acuity logarithm of minimum angle of resolution (LogMAR) worse than 0.51] recruited through National Health Service (NHS) paediatric ophthalmology and developmental vision clinics and 11 VI pupils aged 12-17 attending a specialist school for pupils with disabilities. Individual semi-structured interviews with participants captured their experiences of living with a visual impairment. A child-centred interview topic guide was developed from a literature review, observations at ophthalmology clinics, consultation with health and education professionals working with VI children and young people, and interviews and a focus group with VI pupils from the specialist school. Collaborative qualitative thematic analysis by three researchers identified emergent themes. NVivo software was used for coding the data. Analysis identified six themes concerning living with a visual impairment: (i) social relationships, participation and acceptance; (ii) independence and autonomy; (iii) psychological and emotional well-being; (iv) aspirations and concerns about the future; (v) functioning - home, school and leisure; and (vi) treatment of eye condition. Key issues included: the importance of family and peer support; balancing independence, support and safety; the emotional burden and adjustment of living with a disability; concerns about education and job prospects in the future; functional restrictions and limitations; and ongoing management of the eye condition. The findings offer insights into the complex realities of living with visual impairment. They provide the basis for development of
Didden, H.C.M.; Scholte, R.H.J.; Korzilius, H.P.L.M.; Moor, J.M.H. de; Vermeulen, A.; O'Reilly, M.F.; Lang, R.B.; Lancioni, G.E.
Objective: To explore the types, prevalence and associated variables of cyberbullying among students with intellectual and developmental disability attending special education settings. Methods: Students (n = 114) with intellectual and developmental disability who were between 12–19 years of age
Didden, R.; Scholte, R.H.J.; Korzilius, H.; Moor, J.M.H. de; Vermeulen, A.; O'Reilly, M.F.; Lang, R.; Lancioni, G.E.
OBJECTIVE: To explore the types, prevalence and associated variables of cyberbullying among students with intellectual and developmental disability attending special education settings. METHODS: Students (n = 114) with intellectual and developmental disability who were between 12-19 years of age
Didden, R.; Scholte, R.H.J.; Korzilius, H.P.L.M.; Moor, J.M.H. de; Vermeulen, A.; O'Reilly, M.F.; Lang, R.; Lancioni, G.E.
OBJECTIVE: To explore the types, prevalence and associated variables of cyberbullying among students with intellectual and developmental disability attending special education settings. METHODS: Students (n = 114) with intellectual and developmental disability who were between 12-19 years of age
... Intellectual and Developmental Disabilities; Agency Information Collection Activities; Proposed Collection; Comment Request; Financial Status Reporting Form for State Councils on Developmental Disabilities AGENCY... hours per Total burden respondents respondent response hours Financial Status Reporting Form for State...
De, Sukanya; Small, Jacqueline; Baur, Louise A.
Background: The aim of this study was to determine the prevalence of overweight and obesity in children with developmental disabilities attending a metropolitan Diagnosis and Assessment Service. Method: A retrospective chart review was carried out for 98 children (67 male) aged 2-18 years. Data on age, sex, weight, height, and severity of…
Heller, Tamar; Sorensen, Amy
This article reviews the research on health promotion for adults aging with developmental disabilities. First, it examines barriers to healthy aging, including health behaviors and access to health screenings and services. Second, it reviews the research on health promotion interventions, including physical activity interventions, health education…
Gilmore, Linda; Campbell, Marilyn; Shochet, Ian
Students with developmental disabilities have many challenges with learning and adaptive behaviour, as well as a higher prevalence rate of mental health problems. Although there is a substantial body of evidence for effcacious interventions for enhancing resilience and promoting mental health in typically developing children, very few programs…
Skouge, James R.; Kelly, Mary L.; Roberts, Kelly D.; Leake, David W.; Stodden, Robert A.
This paper focuses on "technologies for voice" that are related to the self-determination of youth with developmental disabilities. The authors describe a self-determination model that values family-focused, community-referenced pedagogies employing "new media" to give voice to youth and their families. In line with the adage that a picture is…
Ncube, B. L.; Perry, A.; Weiss, J. A.
Background: Research examining the quality of life (QoL) of children with severe developmental disabilities (SDD) is limited. The present study examines parent perceptions of child QoL in children with SDD compared with typically developing (TD) children and then examines predictors of QoL for the SDD group. Method: Parents of 246 children with…
Nickel, Robert E.
This article examines reasons parents may choose a controversial alternative treatment for a child with developmental disabilities and reviews a few specific treatments--vitamin B-6 and magnesium, auditory integration training, megavitamins and minerals, Piracetam, intravenous immunoglobulin, and melatonin. Recommendations on talking with families…
Judd, Patricia A.; And Others
The job satisfaction of 35 developmentally disabled workers (17 to 38 years old) placed into competitive employment over a 2.5 year period was assessed. The Job Satisfaction Survey which measures satisfaction with the job itself, with the work group, with the company, and with the pay and job status, was administered orally in structured interview…
Bailey, Donald B., Jr.; Golden, Robert N.; Roberts, Jane; Ford, Amy
Maternal depression in families having a child with a disability has been the subject of considerable research over the past 25 years. This review was designed to describe the literature on maternal depression, critique its research methodology, identify consensus findings across studies, and make recommendations for future research. A particular…
Shalev, Ruth S.; Manor, Orly; Kerem, Batsheva; Ayali, Mady; Badichi, Navah; Friedlander, Yechiel; Gross-Tsur, Varda
Siblings and parents of 39 children with dyscalculia were assessed for arithmetic, reading, and attention disorders. Findings indicated a familial prevalence of dyscalculia almost tenfold higher than expected for the general population and suggest that dyscalculia, like other learning disabilities, has a significant familial aggregation,…
Lignugaris/Kraft, Benjamin; Salzberg, Charles L.; Rule, S.; Stowitschek, J. J.
The social interactions of employees with and without developmental disabilities were observed in two community employment settings during work and breaks. Conversations were frequent and generally concerned work-related topics. Target workers different in how often they interacted with coworkers with and without developmental disabilities. During work, workers with developmental disabilities received commands more often than did their counterparts without developmental disabilities. Work-rel...
Stephens, Dawn L; Collins, Michael D; Dodder, Richard A
from employment, adaptive skills decreased, and that as employment status remained constant, adaptive skills also remained unchanged. No consistent impact was found on challenging behaviors. Type of employment (sheltered, supported, and competitive) was then examined, and the same pattern of changes in adaptive skills was found; i.e., changes in employment to more/less competitive was accompanied by more/less adaptive skills. This suggests that employment itself, especially work in the competitive workforce, may be a significant source of enhancing adaptive skills for people with developmental disabilities and, thus, greatly adding to the success of community living.
Reichow, Brian; Gelbar, Nicholas W; Mouradjian, Keri; Shefcyk, Allison; Smith, Isaac C
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.
Namasivayam, Aravind K; Yan, Tina; Wong, Wing Yiu Stephanie; van Lieshout, Pascal
Null hypothesis significance testing (NHST) dominates quantitative data analysis, but its use is controversial and has been heavily criticized. The American Psychological Association has advocated the reporting of effect sizes (ES), confidence intervals (CIs), and statistical power analysis to complement NHST results to provide a more comprehensive understanding of research findings. The aim of this paper is to carry out a sample survey of statistical reporting practices in two journals with the highest h5-index scores in the areas of developmental disability and rehabilitation. Using a checklist that includes critical recommendations by American Psychological Association, we examined 100 randomly selected articles out of 456 articles reporting inferential statistics in the year 2013 in the Journal of Autism and Developmental Disorders (JADD) and Research in Developmental Disabilities (RDD). The results showed that for both journals, ES were reported only half the time (JADD 59.3%; RDD 55.87%). These findings are similar to psychology journals, but are in stark contrast to ES reporting in educational journals (73%). Furthermore, a priori power and sample size determination (JADD 10%; RDD 6%), along with reporting and interpreting precision measures (CI: JADD 13.33%; RDD 16.67%), were the least reported metrics in these journals, but not dissimilar to journals in other disciplines. To advance the science in developmental disability and rehabilitation and to bridge the research-to-practice divide, reforms in statistical reporting, such as providing supplemental measures to NHST, are clearly needed.
Natasha CHICHEVSKA JOVANOVA
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.
Minh, Hoang Van; Giang, Kim Bao; Liem, Nguyen Thanh; Palmer, Michael; Thao, Nguyen Phuong; Duong, Le Bach
Disability is shown to be both a cause and a consequence of poverty. However, relatively little research has investigated the economic cost of living with a disability. This study reports the results of a study on the extra cost of living with disability in Vietnam in 2011. The study was carried out in eight cities/provinces in Vietnam, including Hanoi and Ho Chi Minh cities (two major metropolitan in Vietnam) and six provinces from each of the six socio-economic regions in Vietnam. Costs are estimated using the standard of living approach whereby the difference in incomes between people with disability and those without disability for a given standard of living serves as a proxy for the cost of living with disability. The extra cost of living with disability in Vietnam accounted for about 8.8-9.5% of annual household income, or valued about US$200-218. Communication difficulty was shown to result in highest additional cost of living with disability and self-care difficulty was shown to lead to the lowest levels of extra of living cost. The extra cost of living with disability increased as people had more severe impairment. Interventions to promote the economic security of livelihood for people with disabilities are needed.
Näslund, Rebecka; Qais Al Said, Shariffa Khalid
This article examines how a group of students with visual disabilities speak about becoming disabled and living with disability in relation to: material entities, practices, and their own expectations regarding the future in the Sultanate of Oman. It draws upon individual interviews among six adults with visual disabilities. The article outlines, from a material semiotics approach, how various forms of modes of ordering enact disability. An interdisciplinary approach, informed by disability s...
Call, Nathan A; Mevers, Joanna Lomas; McElhanon, Barbara O; Scheithauer, Mindy C
Achieving continence of one's bowel movements is a key step in development and failure to do so leads to many negative consequences. Treatments for encopresis appearing in the literature have employed behavioral strategies; medications such as suppositories, laxatives, or enemas; and in some studies a combination of these approaches. To date, attempts to extend successful treatments for encopresis in typically developing children to those with developmental disabilities have been limited. The current study included three participants diagnosed with developmental disabilities who had a history of encopresis. None of the participants had a continent bowel movement under baseline conditions. Continent bowel movements increased during treatment that included the addition of suppositories to elicit continent bowel movements. Two participants began having independent continent bowel movements (i.e., without requiring suppositories) and medication was successfully faded out for the remaining participant. Treatment took between 13 and 21 days. © 2017 Society for the Experimental Analysis of Behavior.
Fickert, Nancy A.; Ross, Diana
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…
Leser, Kendall A.; Pirie, Phyllis L.; Ferketich, Amy K.; Havercamp, Susan M.; Wewers, Mary Ellen
Direct support professionals (DSPs) play a large social role in the lives of people with developmental disabilities (DD) and have the potential to influence their health behaviors. Six qualitative focus groups (n = 48) were conducted with DD community agency administrators, DSPs, family members and adults with DD to better understand the perceived…
Tanis, Emily Shea; Palmer, Susan; Wehmeyer, Michael; Davies, Daniel K.; Stock, Steven E.; Lobb, Kathy; Bishop, Barbara
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…
Olsen, Darren L.
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…
Davis, Cheryl; Bullis, Michael
This article summarizes 43 empirical studies of school-to-community transition of hearing-impaired persons with developmental disabilities; discusses data collection and interpretation issues; and recommends future research, development, and evaluation. The studies deal with such areas as career/vocational preparation, independent living skills,…
Williamson, Heather J.; Perkins, Elizabeth A.
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…
Glick, N.R.; Fischer, M.H.; Heisey, D.M.; Leverson, G.E.; Mann, D.C.
Fractures are more prevalent among people with severe and profound developmental disabilities than in the general population. In order to characterize the tendency of these people to fracture, and to identify features that may guide the development of preventive strategies, we analyzed fracture epidemiology in people with severe and profound developmental disabilities who lived in a stable environment. Data from a 23-year longitudinal cohort registry of 1434 people with severe and profound developmental disabilities were analyzed to determine the effects of age, gender, mobility, bone fractured, month of fracture, and fracture history upon fracture rates. Eighty-five percent of all fractures involved the extremities. The overall fracture rate increased as mobility increased. In contrast, femoral shaft fracture risk was substantially higher in the least mobile [relative risk (RR), 10.36; 95% confidence interval (CI), 3.29-32.66] compared with the most mobile group. Although the overall fracture rate was not associated with age, the femoral shaft fractures decreased but hand/foot fractures increased with age. Overall fracture risk declined in August and September (RR, 0.70; 95% CI, 0.55-0.89), being especially prominent for tibial/fibular fractures (RR, 0.31; 95% CI, 0.13-0.70). Gender was not a factor in fracture risk. Two primary fracture mechanisms are apparent: one, largely associated with lack of weight-bearing in people with the least mobility, is exemplified by femoral fractures during non-traumatic events as simple as diapering or transfers; the other, probably due to movement- or fall-related trauma, is exemplified by hand/foot fractures in people who ambulate. The fracture experience of people with severe and profound developmental disabilities is unique and, because it differs qualitatively from postmenopausal osteoporosis, may require population-specific methods for assessing risk, for improving bone integrity, and for reduction of falls and accidents
Holwerda, Anja; Brouwer, Sandra; de Boer, Michiel R.; Groothoff, Johan W.; van der Klink, Jac J. L.
Purpose Expectations strongly influence future employment outcomes and social networks seem to mediate employment success of young adults with intellectual and developmental disabilities. The aim of this study is to examine the expectations of young adults with intellectual and developmental
Holwerda, A.; Brouwer, S.; de Boer, M.R.; Groothoff, J.W.; van der Klink, J.J.L.
Purpose Expectations strongly influence future employment outcomes and social networks seem to mediate employment success of young adults with intellectual and developmental disabilities. The aim of this study is to examine the expectations of young adults with intellectual and developmental
Holwerda, Anja; Brouwer, Sandra; de Boer, Michiel R.; Groothoff, Johan W.; van der Klink, Jac J. L.
Purpose Expectations strongly influence future employment outcomes and social networks seem to mediate employment success of young adults with intellectual and developmental disabilities. The aim of this study is to examine the expectations of young adults with intellectual and developmental
Full Text Available The purpose of this qualitative study was to examine how and when children with developmental disabilities aged nine to 12 years spontaneously demonstrated play behaviors indicative of intrinsic motivation. Data was collected from six child participants and four parent participants through the use of the Pediatric Volitional Questionnaire (PVQ and semi-structured photo-elicitation interviews. Overall, the children who participated in this study sought out play experiences with which they were familiar in their natural environments. Specifically, they sought out experiences that afforded them the opportunity to exercise control over their environment and create a sense of predictability. Each of the children assumed the role of “orchestrator” and conducted his or her engagement in play occupations. The children demonstrated some spontaneous play within their social environment; however, many developmentally age-appropriate behaviors were not observed.
Gilboa, Yafit; Fuchs, Reut
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.
Neely-Barnes, Susan Louise; Elswick, Susan E
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.
Khalid, K.; Al-Salamah, Saleh M.
This study highlights the spectrum of general surgical problems necessitating admission on intellectually disabled adult patients. Problems encountered in the management and the ways to overcome various difficulties are highlighted. Prospective collection of data on 63 consecutive developmentally disabled adult patients admitted to the Department of General Surgery, Riyadh Medical Complex (RMC), Riyadh, Kingdom of Saudi Arabia for various indications from January 2000 through December 2004. Demographic details, clinical presentation, diagnostic modalities, associated physical and neurological disabilities, coexisting medical condition, treatment options, morbidity and mortality were analyzed. Various difficulties encountered during the management and mean to overcome these problems are addressed. Sixty-three patients accounted for 71 admissions. Mean age was 26.7 years with a male preponderance (4.25:1). Fifty-four patients were admitted for various emergency conditions. History of pica could be obtained in 33% of the cases. Twenty-seven patients were admitted for acute abdomen. Volvulus of the colon (22.2%) and pseudo-obstruction (18.5%) were the most common causes of acute abdomen. Twenty-one patients were admitted with upper gastrointestinal bleeding. Reflux esophagitis was the most common cause of bleeding (62%). Overall morbidity was 41% for emergency admissions and 22% for elective surgery. Hospital mortality was 21.4% for emergency surgery. There was no death in elective cases. Developmentally disabled patients comprise a special class of patients with peculiar management problems. The treating clinician should be aware of various unexpected conditions not found as frequently in the normal patient population. Apparent lack of pain does not exclude an acute emergency. Possible surgical condition should be suspected if there is vomiting, abdominal distension, fever, increased irritability of recent onset. Male gender and history of pica are added risk factors
Delgado, Christine E. F.
Special education outcomes were evaluated for 3,608 children (2,513 males) with a preschool history of developmental disability. Sixty-six percent of the children had an identified disability in fourth grade. The percentage of children with a disability at outcome varied across preschool disability categories from 54% to 96%. The consistency of…
Valeska Aparecida Fernandes SOUZA
Full Text Available The aim of the present study was to investigate factors associated with bruxism in children aged from 1 to 13 years with developmental disabilities. A total of 389 dental records were examined. The bruxism analyzed was determined based on parental reports. The following variables were also analyzed: gender, age, International Code of Diseases (ICD, mouth breathing, history of gastroesophageal reflux, use of psychotropic drugs, gingival status, reports of xerostomia, hyperkinesis, pacifier use, thumb sucking and involuntary movements. For the purposes of analysis, the individuals were categorized as being with and without bruxism. Variables with a p-value < 0.25 in the bivariate analysis were incorporated into the logistic regression models. Females had a 0.44-fold (95%CI: 0.25 to 0.78 greater chance of exhibiting bruxism than males. Individuals with gastroesophageal reflux had a 2.28-fold (95%CI: 1.03 to 5.02 greater chance of exhibiting bruxism. Individuals with reported involuntary movements had a 2.24-fold (95%CI: 1.19 to 4.24 greater chance of exhibiting bruxism than those without such movements. Exhibiting involuntary movements, the male gender and gastroesophageal reflux are factors associated with bruxism in children with developmental disabilities.
Souza, Valeska Aparecida Fernandes; Abreu, Mauro Henrique Nogueira Guimarães; Resende, Vera Lúcia Silva; Castilho, Lia Silva
The aim of the present study was to investigate factors associated with bruxism in children aged from 1 to 13 years with developmental disabilities. A total of 389 dental records were examined. The bruxism analyzed was determined based on parental reports. The following variables were also analyzed: gender, age, International Code of Diseases (ICD), mouth breathing, history of gastroesophageal reflux, use of psychotropic drugs, gingival status, reports of xerostomia, hyperkinesis, pacifier use, thumb sucking and involuntary movements. For the purposes of analysis, the individuals were categorized as being with and without bruxism. Variables with a p-value bruxism than males. Individuals with gastroesophageal reflux had a 2.28-fold (95%CI: 1.03 to 5.02) greater chance of exhibiting bruxism. Individuals with reported involuntary movements had a 2.24-fold (95%CI: 1.19 to 4.24) greater chance of exhibiting bruxism than those without such movements. Exhibiting involuntary movements, the male gender and gastroesophageal reflux are factors associated with bruxism in children with developmental disabilities.
Magill-Evans, Joyce; Galambos, Nancy; Darrah, Johanna; Nickerson, Christy
To identify the personal, family, and community factors that facilitate or hinder employment for young adults with developmental motor disabilities. Quantitative methods with an embedded qualitative component were used. Seventy-six persons between the ages of 20 and 30 years of age (Mean = 25, SD = 3.1) with a diagnosis of either cerebral palsy or spina bifida completed questionnaires addressing factors such as depression, and participated in a semi-structured interview that allowed participants to describe their experiences with education, employment, transportation, and other services. Almost half of the participants (n = 35) were not currently employed. Hierarchical regression analyses indicated that gender (females were less likely to be employed), IQ (lower IQ associated with unemployment), and transportation dependence accounted for 42% of the variance in employment. Themes emerging from content analysis of the interviews supported the findings related to transportation barriers. Social reactions to disability limited employment opportunities, and participants often felt stuck in terms of employment options with limited opportunities for advancement. Transportation is a significant barrier to employment and innovative solutions are needed. Issues related to gender need to be considered when addressing employment inequities for persons with primarily motor disabilities.
Susan D. Moisey
Full Text Available Adults with developmental disabilities in Northeast Alberta, Canada, face numerous barriers to learning opportunities within their immediate and extended communities. The disability itself, as well as geographic distance and the circumstances in which individuals live, may hamper their access to information, interfere with their ability to communicate, and reduce their ability to achieve the quality of life they desire. There are few opportunities for individuals to meet, to get to know each other, and to share their experiences and learn from each other. Family members and guardians face similar barriers, such as lack of access to information, few networking opportunities, and limited means of providing input into decisions about service needs and policy making.
Tait, Kathleen; Hussain, Rafat
Australian education service provision includes the delivery of quality educational programmes to rural and remote living children. However, according to their parents, many children with developmental disabilities (such as Down Syndrome and Autism Spectrum Disorders) who are living in rural country areas in New South Wales (NSW) still do not have…
Dincer, Baris; Erbas, Dilek
This study describes the communication repair behaviors used by nonverbal students with developmental disabilities in the interactions they were involved in with their teachers during free play activities. All children were students at centers serving student with developmental disabilities at Anadolu University in Turkey. Data were collected by…
Neely-Barnes, Susan; Graff, J. Carolyn; Marcenko, Maureen; Weber, Lisa
Family involvement in planning and choosing services has become a key intervention concept in developmental disability services. This study (N = 547) modeled patterns of family decision making and assessed benefits to persons with developmental disabilities (DDs) and their family members. A latent profile analysis identified 4 classes that were…
The present study was designed to examine the effectiveness of visual supports on teaching simultaneous prompting procedure to mothers to provide home-based instruction to their children with developmental disabilities. Three preschool-aged children with moderate developmental disabilities and their mothers were the participants. A multiple probe…
Palmer, S. B.; Wehmeyer, M. L.; Davies, D. K.; Stock, S. E.
Background: A nationwide survey of family members of people with intellectual and developmental disabilities ranging in age from birth through adulthood was conducted to replicate a similar effort by Wehmeyer and update the knowledge base concerning technology use by people with intellectual and developmental disabilities. Method: Survey responses…
Walling, Teresa; Potts, Bridget; Fortune, Jon; Cobb, Ginny L.; Fortune, Barbara
This report describes the outcomes of a Wyoming program that provides host families for individuals with developmental disabilities. Host families work with certified Medicaid providers of home and community-based services for people with developmental disabilities and provide residential habilitation to an adult who is accepted as a member of…
Badia, M.; Orgaz, M. B.; Verdugo, M. A.; Ullan, A. M.
Background: People with developmental disabilities are at high risk for a limited participation in leisure activities. The aim of this study was to investigate the participation in, preference for and interest in leisure activities of young and adults with developmental disabilities, and to examine the factors associated with leisure activity.…
Badia, Marta; Orgaz, María Begoña; Verdugo, Miguel Á.; Ullán, Ana M.; Martínez, Magdalena
Background: Studies of people with developmental disabilities suggest that participation in leisure activities might be a key factor for good quality of life. This study explores the relationships between objective and subjective quality of life and leisure participation of adults with developmental disabilities. Materials and Methods: A…
Hastings, Richard P.
Siblings of children with developmental disabilities were assessed twice, 2 years apart (N = 75 at Time 1, N = 56 at Time 2). Behavioral adjustment of the siblings and their brother or sister with developmental disability was assessed. Comparisons of adjustment for siblings of children with autism, Down syndrome, and mixed etiology mental…
Richards, Deborah; Miodrag, Nancy; Watson, Shelley L.
This paper presents a lifespan perspective of sexuality issues for individuals with developmental disabilities. Individuals with developmental disabilities are human beings who have historically been denied the right to express their sexuality or engage in sexual relationships due to misconceptions or negative attitudes. Using a hypothetical case…
Steinfeld, Hallie; Cho, Megan T.; Retterer, Kyle; Person, Rick; Schaefer, G. Bradley; Danylchuk, Noelle; Malik, Saleem; Wechsler, Stephanie Burns; Wheeler, Patricia G.; van Gassen, Koen L I; Terhal, P. A.; Verhoeven, Virginie J M; van Slegtenhorst, Marjon A.; Monaghan, Kristin G.; Henderson, Lindsay B.; Chung, Wendy K.
Human immunodeficiency virus type I enhancer binding protein 2 (HIVEP2) has been previously associated with intellectual disability and developmental delay in three patients. Here, we describe six patients with developmental delay, intellectual disability, and dysmorphic features with de novo likely
Ferreri, Summer J.; Plavnick, Joshua B.
Many children with severe developmental disabilities emit idiosyncratic gestures that may function as verbal operants (Sigafoos et al., 2000). This study examined the effectiveness of a functional analysis methodology to identify the variables responsible for gestures emitted by 2 young children with severe developmental disabilities. Potential…
Minch, Laura M.
Individuals with developmental disabilities are vulnerable to sexual abuse, and are often denied access to sexuality education. Public schools have vague curricula regarding sexuality education for general education students, curricula to which adolescents with developmental disabilities do not have access. The current study sought to determine…
Malott, Richard W.
A solution is proposed to ineffective but important contingencies which may be especially problematic for developmentally disabled persons. Components of instruction in self-management and other prerequisites to rule-governed behavior are considered and research on the topic with developmentally disabled persons is cited. (CL)
National Council for Therapy and Rehabilitation through Horticulture, Inc., Gaithersburg, MD.
Intended for persons establishing job development programs for developmentally disabled individuals, this training manual details the structure and procedures of Project PLANTWORK, a 21-month demonstration program which placed approximately 70 workers with developmental disabilities into employment in horticulture industry firms or into…
Ambrogi, Robert; And Others
The handbook provides information in question-and-answer format on the legal rights of developmentally disabled persons, focusing on those in the state of Massachusetts. An introductory section discusses developmental disabilities and advocacy. The main section, on legal rights, covers such areas as discrimination (including Section 504 of the…
Gallagher, Stephen; Whiteley, Jenny
The present study tested whether parents caring for children with developmental disabilities would have higher blood pressure compared to parents of typically developing children (controls). It also examined the psychosocial factors underlying this observation. Thirty-five parents of children with developmental disability and thirty controls…
Lunsky, Yona; Elserafi, Jonny
Antipsychotic medication rates are high in adults with developmental disability. This study considered rates of antipsychotic use in 743 adults with developmental disability who had experienced a psychiatric crisis. Nearly half (49%) of these adults were prescribed antipsychotics. Polypharmacy was common with 22% of those prescribed antipsychotics…
Liu, Eleanor X; Carter, Erik W; Boehm, Thomas L; Annandale, Naomi H; Taylor, Courtney E
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.
Simplican, Stacy Clifford; Leader, Geraldine; Kosciulek, John; Leahy, Michael
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.
Kim, Helyn; Carlson, Abby G; Curby, Timothy W; Winsler, Adam
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.
Full Text Available Through a series of focus group discussions conducted in northern and central Vietnam, this study gives voice to the lived economic experience of families with disabilities and how they manage the economic challenges associated with disability. The dynamic of low and unstable income combined with on-going health care and other disability-related costs gives rise to a range of coping mechanisms (borrowing, reducing and foregoing expenditures, drawing upon savings and substituting labour that helps to maintain living standards in the short-run yet threatens the longer-term welfare of both the individual with disability and their household. Current social protection programs were reported as not accessible to all and while addressing some immediate economic costs of disability, do not successfully meet current needs nor accommodate wider barriers to availing benefits.
Full Text Available The birth of a disabled child is a critical event that places all the members of the family in a condition of great vulnerability. When talking about families with a disabled child, attention is usually focused on the parents. Siblings tend to play a marginal role, as shown in the referred literature, in this specific field of investigation. Communicating diagnosis to siblings means involving them in the process of family change, making them active players rather than “spectators” in their own “existential niche”. Communication of diagnosis is a delicate, continuous process that has to be tackled appropriately, using targeted words and educational actions. Children need help in accepting and welcoming their disabled sibling, with all his/her characteristics (and deficits, through a balanced, pondered approach that includes both the dimension of co-development and the acknowledgement of problematic situations.
Dang, Michelle T.
A significant number of children in the United States have developmental disabilities. Historically, many children with developmental disabilities were institutionalized and rarely seen in public. Currently, children with developmental disabilities are entitled to education and health-related support services that permit them access to public…
Full Text Available The article provides the results of studying developmental indicators of children living in the areas of iodine deficiency. The basic anthropometric parameters (height and weight, chest circumference were defined, the estimation of intellectual development in 819 children aged 7–16 years living in the regions with mild (472 persons and moderate (347 persons iodine deficiency was carried out. Examined children were standardized by major factors of developmental effect. Anthropometric measurements were carried out by standard methods. Maturity of intellectual functioning was determined using the fragment of R. Cattell test, indicators of mental activity — with proofreading test in conjunction with reading rate test. In all children we have carried out measurement of daily ioduria (Sandell — Kolthoff reaction, palpation of the thyroid gland, determination of its size and structure using ultrasound. It was found that the diet of children is characterized by deficiency of food rich in iodine. Iodized salt was used only by 1 of 50 families. Children living in the regions with moderate iodine deficiency in all age subgroups have lower rates of physical development. A third of children living in areas of iodine deficiency have disharmonic physical development. 13.8 % of children from the regions of iodine deficiency have changes in the majority of the studied cognitive functions. Leading disabilities in the whole group of children were memory impairment and fine motor skills disorders. The level of intellectual maturity, productivity and accuracy of human performance decreases with growing iodine deficiency.
Wasfi, Rania; Steinmetz-Wood, Madeleine; Levinson, David
One of the major causes of social exclusion for people with developmental disability (PDD) is the inability to access different activities due to inadequate transportation services. This research paper identifies transportation needs, and reasons for unmet, but desired untaken trips of adults with developmental disabilities in Hennepin County, Minnesota. We hypothesize that PDD cannot make trips they want to make due to personal and neighborhood characteristics. A survey measuring existing travel behavior and unmet transportation needs of PDD (N = 114) was conducted. The survey included both demographic and attitudinal questions as well as a travel diary to record both actual and desired but untaken trips. Logistic regression analyses were conducted to determine reasons associated with their inability to make desired, but untaken trips. Most respondents did not live independently. More than half of the surveyed population worked every day and recreation trips occurred at least once a week for about two-thirds of the population. About 46% were unable to make trips they needed to make. Public transit posed physical and intellectual difficulties, however the presence of public transit in neighborhoods decreased odds of not making trips. Concerns about Paratransit services were also reported. Findings from this study can be of value to transportation engineers and planners interested in shedding light on the needs of a marginalized group that is rarely studied and have special transport needs that should be met to ensure their social inclusion in society. Copyright © 2016 Elsevier Inc. All rights reserved.
Full Text Available The YHD group (Youth Handicapped Deprivileged was shaped from the need of young disabled students who wanted to taste freedom and independence. Through revolt, persistence and thirst for answers, the informal movement Youth Handicapped Deprivileged was established. It was later transformed into YHD – Association for Theory and Culture of Handicap. YHD found a home in ACC Metelkova and has stayed there for 20 years. The theory of handicap and revolt against medical comprehension of disability are the principal guidelines to which the Associations’ projects and actions adhere. Other associations for disabled people are centered around medical diagnoses of its members, whereas YDH aims to bring about positive changes concerning the position of handicapped people in the society. For YHD, disability is a social status and not a characteristic of the body or a mental condition, difficulty or »special need«. YHD rejects a pre-written script for the lives of the disabled.
Mudge, Suzie; Kayes, Nicola M; Stavric, Verna A; Channon, Alexis S; Kersten, Paula; McPherson, Kathryn M
Obesity is more prevalent for disabled people (estimated as being between 27-62%) compared to the general population (17-22%). Disabled people are more likely to report poorer general health and acquire a range of obesity-related secondary conditions. Although there are many physical activity and nutrition initiatives aimed at obesity prevention, little is known about whether these options are relevant and accessible for disabled people. The Living Well Study aimed to better understand the issues faced by disabled people when engaging in physical activity and healthy eating. The study drew on a participatory action research design involving key stakeholders. There were two core cyclical phases (A and B), in which data collection was followed by a period of analysis, reflection and refinement. Focus groups and interviews were held with individuals who experience a range of disabilities, family members, service providers and representatives from disability advocacy groups. We sought to explore the importance and meaning of physical activity and healthy eating and factors that influenced engagement in these. Data in phase A were analysed using conventional content analysis drawing on constant comparative methods to identify themes of importance. In phase B, data analysis occurred alongside data collection, using a structured template to summarise participants' agreement or disagreement with the draft themes and recommendations, until the themes and recommendations were refined based on participants' corroboration. 146 participants aged between 10-69 years, from both rural and urban areas and of different cultural backgrounds participated. Seven interconnecting themes that related to engagement in living well behaviours emerged with a wide range of external factors (such as people, knowledge, time, cost, identity and the environment) impacting on living well options. The central theme - It depends: needs, values and competing factors - emphasised the complexity faced
Valicenti-McDermott, Maria; Lawson, Katharine; Hottinger, Kathryn; Seijo, Rosa; Schechtman, Merryl; Shulman, Lisa; Shinnar, Shlomo
The level of parental stress in families of children with autism and other developmental disabilities and its association with child comorbid symptoms was studied in an ethnically diverse population, in a cross-sectional study with structured interview. The sample included 50 families of children with autism and 50 families of children with other developmental disabilities, matched by age/gender. Interview included Parenting Stress Index-Short Form, Gastrointestinal Questionnaire, Child Sleep Habits Questionnaire, and Aberrant Behavior Checklist. In this ethnically diverse sample, parental stress was significantly higher for the autism group and for non-Hispanic and US-born mothers. In both study groups, parental stress was related to child irritability. Parental stress was also related to gastrointestinal problems in the autism group and to sleep difficulties in the developmental disabilities group. Targeting child irritability may be particularly important in reducing parental stress for families of children with autism and other developmental disabilities. © The Author(s) 2015.
Stodden, Robert A.; Browder, Phyllis Meighen
Success in competitive employment placement of a demonstration project serving 53 persons with developmental disabilities is associated with three factors: (1) training approach and methodology; (2) program management; and (3) trainee characteristics. (CL)
Heller, Tamar; Factor, Alan
This article summarizes the proceedings of the Family Support and Intergenerational Caregiving work group that was part of the "State of the Science in Aging with Developmental Disabilities: Charting Lifespan Trajectories and Supportive Environments for Healthy Living" symposium. The aim was to provide a research and policy agenda that would result in a better social, health, and economic well being for adults with intellectual and developmental disabilities and family caregivers. Key issues addressed were (1) demographic challenges; (2) long-term outcomes, poverty and cultural minority status; (3) interdependent roles of family members; and (4) family support policies and practices. The group identified the following major gaps in knowledge that need to be included in a future research agenda: data on the demography of families, including information on cultural minorities and families living in poverty; research on the interdependent roles of various family members in providing support to each other, including siblings, grandparents, and the person with disabilities; and development and assessment of models for providing supports to families and that bridge the aging and disability networks. The outcomes of this recommended research agenda will result in progressive policies and culturally sensitive supports that will improve the health, social, and economic well-being of adults with I/DD and their families.
Steinberg, Marc L.; Heimlich, Laura; Williams, Jill M.
Tobacco use is the leading preventable cause of death in the United States. Although few tobacco control efforts target individuals with intellectual and/or developmental disabilities, this population may be especially vulnerable to the deleterious effects of tobacco use and dependence. Individuals with intellectual and developmental disabilities…
Janeslatt, Gunnel; Granlund, Mats; Kottorp, Anders; Almqvist, Lena
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…
Carter, Erik W.; Asmus, Jennifer; Moss, Colleen K.
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…
Sandoz, Charles J.
This paper documents an approach to meeting the training requirements of the Occupational Safety and Health Act (OSHA) and the "reasonable accommodation" requirements of the Americans with Disabilities Act (ADA) for individuals with developmental disabilities. It describes a training program used with three adult workers with mild mental…
Park, Hye Ran
Menstruation is a difficult topic to address with as females with or without disabilities. It is a more significant challenge for females with developmental disabilities (DD) because it stimulates a variety of physical and psychological changes. Thus, some females with DD might have a qualitatively different experience compared to the general…
Mitchell, D. B.; Hauser-Cram, P.
Background: The importance of positive parent-adolescent relationships is stressed in research on adolescents, although very little is known about this relationship when a teen has developmental disabilities (DD). We investigated the relationships of adolescents with disabilities with their mothers and their fathers in order to answer a number of…
Gray, Jennifer A.; Truesdale, Jesslyn
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,…
Manor-Binyamini, Iris; Abu-Ajaj, Othman
This is the first study that examines the coping of siblings of children with developmental disabilities in comparison with siblings of children without disabilities in the Bedouin community in Israel. For this purpose, the study examines the components of self-esteem, stress, and growth. Data were collected from 200 adolescents. The findings of…
Pitchford, E. Andrew; Siebert, Erin; Hamm, Jessica; Yun, Joonkoo
Physical activity promotion is of need for youth with developmental disabilities. Parental perceptions of physical activity benefits may influence youth behaviors. This study investigated the relationship between parental beliefs on the importance of physical activity and physical activity levels among youth with disabilities. Parents and…
Russell, Andrew T.; Hahn, Joan Earle; Hayward, Katharine
The purpose of this study was to describe the medication management and treatment provided in a specialty outpatient psychiatry clinic for 198 community-residing children and adults with intellectual disability and other developmental disabilities (IDD) referred to the clinic and discharged between 1999 and 2008. Using a descriptive design, data…
Parish, Susan L.; Swaine, Jamie G.; Luken, Karen; Rose, Roderick A.; Dababnah, Sarah
Women with developmental disabilities are significantly less likely than women without disabilities to receive cervical and breast cancer screening according to clinical guidelines. The reasons for this gap are not understood. The present study examined the extent of women's knowledge about cervical and breast cancer screening, with the intention…
, health care professionals can play a role in linking people to such resources as AT-EI and related services and strategies to support community living. Such a shift in focus also enables professionals to validate interdependence; that is, the give-take relationships that people have with each other to support each other . The use of AT-EI by people with developmental disabilities often involves an interdependent relationship in which another person may help set up the environment or technology and, in turn, the consumer can then reciprocate and engage in an activity or a relationship . Health care professionals also need to better understand and take into consideration the social context, its influence on consumers' use or nonuse of AT-EI, and the long-term influence on community living and participation decisions . Nurses can involve important others in the process by listening to and considering their needs, and ensuring that they are informed about options, the benefits of using AT-EI for the consumer and themselves, and how to set up and troubleshoot the AT-EI. In cases where important others are not supportive, health care professionals may be in a position to link the consumer with other consumers and advocacy groups such as Centers for Independent Living or Self Advocates Becoming Empowered that may offer that support as well as membership in a collective community engaged in systems change. Health care professionals can serve as a system interface by linking people to information and resources to make informed decisions . Resources on developmental disability and health, common issues that may occur, and life course planning help people identify functional issues and early signs of accelerated aging and proactively use the environment and technology to stay in living situations of choice. Few health care professionals are well prepared to provide services to people with developmental disabilities as they age; a great need exists for providers of
Cai, Sean X.; Kornspan, Alan S.
The physical activity patterns of students with disabilities have been studied in order to understand how much moderate and vigorous daily physical exercise is obtained. Literature suggests that students with disabilities are less physically active as compared to children without disabilities. As a result of being less physically active, these…
Namkung, Eun Ha; Song, Jieun; Greenberg, Jan S; Mailick, Marsha R; Floyd, Frank J
We prospectively examined the risk of divorce in 190 parents of children with developmental disabilities compared to 7,251 parents of children without disabilities based on a random sample drawn from the community and followed longitudinally for over 50 years. A significant interaction between the parental group status and number of children was found: In the comparison group, having a larger number of children was related to an increased risk of divorce, whereas the number of children did not increase divorce risk among parents of children with developmental disabilities.
Song, Jieun; Greenberg, Jan S.; Mailick, Marsha R.; Floyd, Frank J.
We examined prospectively the risk of divorce in 190 parents of children with developmental disabilities compared to 7,251 parents of children without disabilities based on a random sample drawn from the community and followed longitudinally for over 50 years. A significant interaction between the parental group status and number of children was found: In the comparison group, having a larger number of children was related to an increased risk of divorce, whereas the number of children did not increase divorce risk among parents of children with developmental disabilities. PMID:26505872
Palley, H A; Van Hollen, V
This article explores how the trends toward long-term community care affecting people with developmental disabilities developed. Appropriateness of care and quality of life issues are discussed. The article also reviews the development of long-term care for frail and disabled elderly people and explores the arguments for a continuum of care that have developed in this area. The authors conclude that future policies with respect to meeting long-term care needs for people with developmental disabilities must be addressed flexibly on an individual basis, related to individual needs, and must provide a continuum of care services.
Dossa, P A
The literature refers to older people with developmental disabilities as the "new service population." How and why this population emerged as a special category is discussed conceptually with reference to social systems theory. A brief review of social systems theory and some basic systemic tenets are presented. Systemic tenets are employed in examining the historical development of social gerontology and present trends in the service-delivery system. I show that the systemic variable of the economic model of human development has significantly impacted on the making of older people with developmental disabilities a dependent population. In the conclusion the systems perspective is explored in relation to recognizing the liminal, in-between parts between components. It is argued that such a perception minimizes the dichotomy between older people with developmental disabilities and the non-disabled population, paving the way for a genuine encounter.
Van Riper, Cynthia L; Wallace, Lee Shelly
It is the position of the American Dietetic Association that nutrition services provided by registered dietitians (RDs) and dietetic technicians, registered (DTRs), are essential components of comprehensive care for all people with developmental disabilities and special health care needs. Nutrition services should be provided throughout life in a manner that is interdisciplinary, family-centered, community-based, and culturally competent. People with developmental disabilities and special health care needs frequently have nutrition concerns, including growth alterations (failure to thrive, obesity, or growth retardation), metabolic disorders, poor feeding skills, medication-nutrient interactions, and sometimes partial or total dependence on enteral or parenteral nutrition. Individuals with special needs are also more likely to develop comorbid conditions such as obesity or endocrine disorders that require nutrition interventions. Poor health habits, limited access to services, and long-term use of multiple medications are considered health risk factors. Health maintenance and avoidance of complications can be promoted by timely and cost-effective nutrition interventions. Public policy for individuals with special needs has evolved over time, resulting in a transition from institutional facilities and programs to community living. The expansion of public access to technology and health information on the Internet challenges RDs and DTRs to provide accurate scientific information for those with developmental disabilities and special health care needs. Nationally credentialed RDs and DTRs are best prepared to provide appropriate nutrition information for wellness and quality of life.
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.
Salter, Erica K
Through an exploration of the experience of severe and profound intellectual disability, this essay will attempt to expose the predominant, yet usually obscured, medical anthropology of the child and examine its effects on pediatric bioethics. I will argue that both modern western society and modern western medicine do, actually, have a robust notion of the child, a notion which can find its roots in three influential thinkers: Aristotle, Immanuel Kant and Jean Piaget. Together, these philosophers offer us a compelling vision: the child is primarily a future rational, autonomous adult. While this tacit understanding has arguably widespread effects on such things as our concept of good parenting, of proper schooling, and so on, I will focus on the effect is has on the treatment of children with severe developmental disabilities. When examined in light of this population, the dominant medical anthropology of the child will be shown to be deficient. Instead, I argue for an expansion-indeed, a full reimagining-of our notions of childhood, not only to re-infuse dignity into the lives of children with SDD, but to better represent the goods of childhood, generally.
Lauer, Emily; McCallion, Philip
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…
Brasić, James Robert; Barnett, Jacqueline Y; Kowalik, S; Tsaltas, Margaret Owen; Ahmad, Raheela
Although the risk of the eventual development of tardive dyskinesia and other persistent adverse effects of neuroleptics is high, among adults with mental retardation and other developmental disabilities, neuroleptics may ameliorate dyskinesias, aggression, and inattention. The effects of traditional neuroleptics on a comparable population of children and adolescents with mental retardation and other developmental disabilities are unknown. The objective of this study was to develop an assessment battery to describe the effects of traditional neuroleptics on the behavior and movements of a small sample of children and adolescents with mental retardation and other developmental disabilities. 13 children and adolescents aged 6 to 16 years attending a developmental disabilities clinic were evaluated utilizing a Movement Assessment Battery to measure behavior and motions. Five subjects took traditional neuroleptic medications. Trained raters can reliably assess the movements and behaviors of children and adolescents with multiple handicaps. Children and adolescents with developmental disabilities may be vulnerable to experience functional impairment and akathisia, tics, and other dyskinesias when administered traditional neuroleptic medications.
Thompson, Sandra; Hiebert-Murphy, Diane; Trute, Barry
Based on the adjustment phase of the double ABC-X model of family stress (McCubbin and Patterson, 1983) this study examined the impact of parenting stress, positive appraisal of the impact of child disability on the family, and parental self-esteem on parental perceptions of family adjustment in families of children with disabilities. For mothers,…
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.
Wolfe, Barbara; Song, Jieun; Greenberg, Jan S.; Mailick, Marsha R.
Developmental disabilities and severe mental illness are costly to the affected individual and frequently to their family as well. Little studied are their nondisabled siblings. Here we examine major life course outcomes (education, employment, and marriage) of these siblings in adulthood using data from the Wisconsin Longitudinal Study. Our sample comprises 113 individuals with developmental disabilities and 337 of their nondisabled siblings; 97 individuals with mental illness and 235 of their nondisabled siblings; and 17,126 unaffected comparison group members. We find that siblings of individuals with mental illness have less education and less employment than the unaffected comparison group, whereas those who have a sibling with developmental disabilities had normative patterns of education and employment, but less marriage and more divorce. Robustness tests incorporating genetic data do not change the conclusions based on the nongenetic analyses. PMID:24607704
Di Nuovo, Santo F; Buono, Serafino
The results of previous studies on the factorial structure of Wechsler Intelligence Scales are somewhat inconsistent across normal and pathological samples. To study specific clinical groups, such as developmentally disabled persons, it is useful to examine the factor structure in appropriate samples. A factor analysis was carried out using the principal component method and the Varimax orthogonal rotation on the Wechsler Adult Intelligence Scale (WAIS-R) in a sample of 203 developmentally disabled persons, with a mean age of 25 years 4 months. Developmental disability ranged from mild to moderate. Partially contrasting with previous studies on normal samples, results found a two-factor solution. Wechsler's traditional Verbal and Performance scales seems to be more appropriate for this sample than the alternative three-factor solution.
Witsø, Aud Elisabeth; Kittelsaa, Anna M.
Background: Living active adult lives is both a value and a right, but the right to do so is associated with restrictions among adults with learning disabilities. This research aimed to capture professionals' understanding and perception of active adult living for people with learning disabilities living in clustered housing in a Norwegian…
Kartal, Mine Sonmez; Ozkan, Serife Yucesoy
The effects of class-wide self-monitoring on the on-task behaviors of preschoolers with developmental disabilities were determined. Also examined were whether the on-task behaviors of preschoolers with developmental disabilities had approximated the level of typically developing peers at the end of intervention, and classroom teachers and…
Ptomey, Lauren T.; Saunders, Richard R.; Saunders, Muriel; Washburn, Richard A.; Mayo, Matthew S.; Sullivan, Debra K.; Gibson, Cheryl A.; Goetz, Jeannine R.; Honas, Jeff J.; Willis, Erik A.; Danon, Jessica C.; Krebill, Ron; Donnelly, Joseph E.
Background: The prevalence of obesity among individuals with intellectual and developmental disabilities (IDD) is equal to or greater than the general population. Methods: Overweight/obese adults (BMI =25 kg/m2) with mild-to-moderate intellectual and developmental disabilities were randomized to an enhanced stop light diet…
Nishio, Akihiro; Yamamoto, Mayumi; Ueki, Hirofumi; Watanabe, Takahiro; Matsuura, Kenshin; Tamura, Osamu; Uehara, Ryosuke; Shioiri, Toshiki
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.
Shobana, M; Saravanan, C
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.
Dunn, Michael; Barrio, Brenda; Hsiao, Yun-Ju
Students with developmental disabilities often struggle with life-readiness skills (e.g., literacy skills such as reading and writing, task completion, and communication), which also help prepare students for the workplace. Assistive technology tools offer these students a means to do better in these areas. In this action-research study, we…
Kirk, Hannah E.; Gray, Kylie M.; Ellis, Kirsten; Taffe, John; Cornish, Kim M.
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…
Mallik, Kalisankar; Yuspeh, Sheldon
A 1-year demonstration project involving 24 developmentally disabled students (9- to 20-years-old) with severe physical limitations was conducted to increase their educational and vocational possibilities by using cost-effective bio-engineering techniques to modify their physical environment and develop improved adaptive devices. Phase I of the…
Parish, Susan L.; Son, Esther; Powell, Robyn M.; Igdalsky, Leah
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…
Rodriguez, Anthony M.
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…
Kirk, Hannah E.; Gray, Kylie; Riby, Deborah M.; Taffe, John; Cornish, Kim M.
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…
Saloviita, Timo; Pirttimaa, Raija; Kontu, Elina
Background: Children with developmental disabilities who exhibit challenging behaviour are potentially subject to the use of coercive interventions. The aim of the study was to investigate the prevalence of the use of coercive measures by authorities, according to parents' reports. Materials and Methods: A postal survey was distributed, as a total…
Fujiura, Glenn T.; Li, Henan; Magaña, Sandy
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…
Heinrichs, Eberhard; Rokusek, Cecilia
This educational manual, an interdisciplinary effort of professionals throughout South Dakota, is intended to serve as a practical guidebook of ideas to better serve the nutritional needs of the developmentally disabled population. The manual addresses: dietary aids for specific disorders; appropriate foods or supplements for optimal nutrition;…
Gilson, Cathy B.; Bethun, Lauren K.; Carter, Erik W.; McMillan, Elise D.
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…
Akdemir, Devrim; Pehlivantürk, Berna; Unal, Fatih; Ozusta, Seniz
This study examined social behaviors related to attachment in children with autistic disorder and the differences in these behaviors from those observed in developmentally disabled children. Additionally, we aimed to investigate the relationship between attachment behaviors and clinical variables, such as age, cognitive development, severity of autism, language development, and mothers' attachment styles. The study group consisted of 19 children with autistic disorder (mean age: 37.9 +/- 6.8 months) and the control group consisted of 18 developmentally disabled children without autistic disorder that were matched with respect to age, gender, and cognitive development. The Childhood Autism Rating Scale (CARS) was administered to all the children by two child psychiatrists. Mothers completed the Relationships Scale Questionnaire (RSQ). Cognitive development of the children was assessed with the Stanford-Binet intelligence scale. Attachment behaviors of the children were evaluated with a modified Strange Situation Procedure (SSP). Attachment behaviors in the children with autistic disorder and in the children with developmental disabilities were similar. In contrast to the developmentally disabled group, the children with autistic disorder stayed closer toward their mothers compared with their responses to strangers. In the autistic disorder group, attachment behaviors were not associated with age, intelligence quotient, or mothers' attachment styles; however, a significant relationship between the severity of autism and the presence of speech was observed. Parents' understanding of the attachment needs and the attachment behaviors of their autistic children in the early stages of the disorder may lead to more secure attachment relationships and improved social development.
Scherba de Valenzuela, J.; Kay-Raining Bird, E.; Parkington, K.; Mirenda, P.; Cain, K.; MacLeod, A.A.N.; Segers, P.C.J.
The purpose of this article is to describe the results of a thematic analysis of 79 semi-structured interviews collected at six research sites in four countries in relation to the inclusion and exclusion of students with developmental disabilities (DD) in and from special education and bilingual
National Institute of Dental and Craniofacial Research (NIDCR), 2009
Taking care of someone with a developmental disability requires patience and skill. As a caregiver, you know this as well as anyone does. You also know how challenging it is to help that person with dental care. It takes planning, time, and the ability to manage physical, mental, and behavioral problems. Dental care isn't always easy, but you can…
Herman, Sandra E.; Marcenko, Maureen O.
This study examined effects of resource perceptions and respite use in a theoretical model of adaptation with 72 parents of children with developmental disabilities. Amount and quality of respite services indirectly affected parental depression. Both quality and respite use were related to helpfulness of the parent's social network. The strongest…
Lang, Russell; White, Pamela J.; Machalicek, Wendy; Rispoli, Mandy; Kang, Soyeon; Aquilar, Jeannie; O'Reilly, Mark; Sigafoos, Jeff; Lancioni, Giulio; Didden, Robert
We reviewed studies involving the treatment of bruxism (i.e., teeth clenching or teeth grinding) in individuals with developmental disabilities. Systematic searches of electronic databases, journals, and reference lists identified 11 studies meeting the inclusion criteria. These studies were evaluated in terms of: (a) participants, (b) procedures…
Houwen, Suzanne; Visser, Linda; van der Putten, Annette; Vlaskamp, Carla
Background: There is an emerging body of evidence showing that motor and cognitive development are intertwined. However, little is known about (early) motor, cognitive, and language development in children with developmental disabilities. The aims of this study were to examine motor development in
John, Aesha; Bower, Kori; McCullough, Samie
Although Asian Indians constitute one of the largest immigrant groups in the USA, research examining wellbeing among Indian immigrant families caring for a child with a developmental disability is relatively scarce. In response, this study examined the stressors and perceived quality of social support among Indian immigrant families of children…
Waldman, H Barry; Perlman, Steven P
To emphasise the oral health needs of older individuals with intellectual and developmental disabilities, the impact on the individual's general health and the role that can be played by nurses. All too often an examination and consideration of the oral health condition of this patient population by nurses/physicians is cursory at best. The increasing retention of the dentition into later years of life provides both the favourable abilities for eating, speech and self esteem, but also the potential for local and general health concerns. Discursive paper. Based on the findings from dental examination of thousands of international athletes in the Special Olympic Games and clinical experiences in academic and private practice settings for care of individuals with intellectual and developmental disabilities, a discursive listing was developed for use in a preliminary examination of the oral cavity. A nurse can play a critical role in the examination, preventive services and referrals for dental care for older individuals with intellectual and developmental disabilities. The specific oral health needs of older individuals with intellectual and developmental disabilities should be an integral component of the preventive and general health care provided by nurses. © 2012 Blackwell Publishing Ltd.
Stinson, Jennifer; Christian, LeeAnn; Dotson, Lori Ann
This article discusses barriers to sexual fulfillment faced by women with developmental disabilities, including: access to gynecological healthcare, limited choices regarding reproductive issues, lack of sex education, and prevailing negative stereotypes that affect the way women are viewed by others and the way they view themselves.…
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…
Vander Zanden, Jeanne A.
This introduction to basic principles of psychotropic drug use in developmentally disabled patients is intended to provide personnel working in the field with information on appropriate clinical use as well as potential risks. Presented in outline form, information is provided on five classes of psychotropic drugs: antipsychotics; antidepressants;…
Dal Pozzo, Earlene; Bernstein, Gail S.
Intended for personnel in programs serving persons with developmental disabilities, the booklet provides basic information about the major psychiatric disorders and their treatment. Five sections cover: the major disorders; medications--uses and problems; assessment; cooordination of services; and psychiatric emergencies. Major disorders such as…
van der Meer, Larah; Kagohara, Debora; Achmadi, Donna; O'Reilly, Mark F.; Lancioni, Giulio E.; Sutherland, Dean; Sigafoos, Jeff
We compared speed of acquisition and preference for using a speech-generating device (SGD) versus manual signing (MS) as augmentative and alternative communication (AAC) options. Four children with developmental disabilities (DD), aged 5-10 years, were taught to request preferred objects using an iPod[R]-based SGD and MS. Intervention was…
McHugh, Meaghan C.; Howard, Donna E.
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…
Stodden, Robert A.; Browder, Phyllis M.
The paper describes a demonstrative project designed to help 52 mentally retarded or otherwise developmentally disabled adults obtain and maintain competitive employment. The trainees were first evaluated in a situational assessment covering seven areas: (1) attendance and stamina, (2) independence, (3) productivity, (4) learning style, (5) work…
Parish, Susan L.; Rose, Roderick A.; Swaine, Jamie G.; Dababnah, Sarah; Mayra, Ellen Tracy
Understanding the financial well-being of single mothers who care for children with developmental disabilities is important to ensure that public policies can be effectively targeted to support these vulnerable families. The authors analyze data from the Survey of Income and Program Participation to describe income poverty, asset poverty, income,…
Sy, Jolene R.; Vollmer, Timothy R.
We evaluated the discrimination acquisition of individuals with developmental disabilities under immediate and delayed reinforcement. In Experiment 1, discrimination between two alternatives was examined when reinforcement was immediate or delayed by 20 s, 30 s, or 40 s. In Experiment 2, discrimination between 2 alternatives was compared across an…
Piazza, Vivian E.; Floyd, Frank J.; Mailick, Marsha R.; Greenberg, Jan S.
Among aging parents (mean age = 65, "N" = 139) of adults with developmental disabilities, we examined the effectiveness of multiple forms of coping with caregiver burden. As expected, accommodative strategies of adapting to stress (secondary engagement), used frequently in later life, buffered the impact of caregiver burden, whereas…
The attitudes and opinions of special education teachers may potentially reveal insight as to how and why teachers choose to include sex education in their curriculum for self-contained special education classrooms designed to serve students with developmental disabilities. The main objective in developing this study was to gather information…
Dressler, Paul B.; Nguyen, Teresa K.; Moody, Eric J.; Friedman, Sandra L.; Pickler, Laura
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…
DeLeon, Iser G.; Kahng, SungWoo; Rodriguez-Catter, Vanessa; Sveinsdottir, Ingibjorg; Sadler, Christine
An adolescent with developmental disabilities who used a wheelchair was anecdotally observed to display little aggressive behavior when being pushed, but higher rates when movement was terminated. A functional analysis confirmed the elevated aggression and the child was taught to request movement through appropriate means. Aggression decreased…
Lister, Suzanne; Tanguay, Denise; Snow, Stephen; D'Amico, Miranda
The Centre for the Arts in Human Development in Montreal has provided art, drama, music, and dance/movement therapies to adults with developmental disabilities for over 10 years with the goals of developing and enhancing self-esteem, social skills, and communication abilities. This report describes the development and purpose of the center,…
Krikeli, Vasiliki; Michailidis, Anastasios; Klavdianou, Niovi-Dionysia
This paper investigates the effect of music on the communication improvement of children with developmental disabilities. Forty subjects (18 boys and 22 girls) 7-12 years old, were divided into an experimental group (n = 20) which participated in music therapy activities and a control group (n = 20) which was discussing and watching television,…
Deagle, Elena; D'Amico, Miranda
The current study is a qualitative analysis of the results of a literacy skills intervention with a group comprising of three individuals with Down syndrome and three individuals with other developmental disabilities. The intervention was developed to address the concern that individuals in this population are often only exposed to functional…
Radtke, Frederick A.; Radtke, Jean C.
The paper deals primarily with the components of culture that preclude rejection of developmentally disabled persons with a view toward minifying these attitudes in the future. Reviewed are such components of culture as democratic ideals, religious factors, economic factors, and educational practices which foster negative attitudes toward the…
Moor, J.M.H. de; Didden, H.C.M.; Korzilius, H.P.L.M.
BACKGROUND: Young children with developmental disabilities are at risk of food refusal. In case of severe food refusal, children are being fed by nasal or gastrostomy tube. Behavioural treatment may be effective in establishing oral food intake. METHODS: A behavioural treatment package was
Moor, J.M.H. de; Didden, H.C.M.; Korzilius, H.P.L.M.
Background Young children with developmental disabilities are at risk of food refusal. In case of severe food refusal, children are being fed by nasal or gastrostomy tube. Behavioural treatment may be effective in establishing oral food intake. Methods A behavioural treatment package was
Moor, J.M.H. de; Didden, R.; Korzilius, H.P.L.M.
BACKGROUND: Young children with developmental disabilities are at risk of food refusal. In case of severe food refusal, children are being fed by nasal or gastrostomy tube. Behavioural treatment may be effective in establishing oral food intake. METHODS: A behavioural treatment package was
Tan, Xi; Marshall, Vincent D.; Balkrishnan, Rajesh; Patel, Isha; Chang, Jongwha; Erickson, Steven R.
Psychotropic medications are a common treatment for mental illness in people with developmental disabilities. Medication adherence is a critical determinant of the effectiveness of psychotropic drugs, but psychotropic medication adherence research specific to this population remains limited. This retrospective study analyzed Marketscan®…
Lindstrom, Lauren; Hirano, Kara A.; McCarthy, Colleen; Alverson, Charlotte Y.
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…
Sinclair, James; Unruh, Deanne; Lindstrom, Lauren; Scanlon, David
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…
Gilson, Carly B.; Carter, Erik W.; Bumble, Jennifer L.; McMillan, Elise D.
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…
MSc Stijn Deckers; Jan J.W. van der Burg; Jan M.H. de Moor
Total and chronic food refusal (i.e., the refusal of all types of food during a prolonged period) in young children with developmental disabilities can be treated effectively using a combination of environmental interventions. However, no guidelines for the selection of food items to offer the child
Crnic, Keith A.; Neece, Cameron L.; McIntyre, Laura Lee; Blacher, Jan; Baker, Bruce L.
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…
Amado, Angela Novak; Stancliffe, Roger J.; McCarron, Mary; McCallion, Philip
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…
Van Laarhoven, Toni; Winiarski, Lauren; Blood, Erika; Chan, Jeffrey M.
A modified pre/posttest control group design was used to measure the effectiveness of video modeling on the maintenance of vocational tasks for six students with autism spectrum disorder and/or developmental disabilities. Each student was assigned two vocational tasks at their employment settings and their independence with each task was measured…
McDonald, Katherine Elizabeth
Respect is central to ethical guidelines for research. The scientific community has long debated, and at times disagreed on, how to demonstrate respect in research with adults with intellectual and developmental disabilities. To illuminate the voices of those most affected, the author studies the views of adults with intellectual and developmental…
Matson, Johnny L.; Mahan, Sara; LoVullo, Santino V.
Great strides have been made in the development of skills and procedures to aid children with developmental disabilities to establish maximum independence and quality of life. Paramount among the treatment methods that have empirical support are treatments based on applied behavior analysis. These methods are often very labor intensive. Thus,…
Jacob, Udeme Samuel; Olisaemeka, Angela Nneka; Edozie, Isioma Sitamalife
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,…
Rurangirwa, Jacqueline; Braun, Kim Van Naarden; Schendel, Diana; Yeargin-Allsopp, Marshalyn
Objective: Measure select Healthy People 2010 Leading Health Indicators in young adults with and without a history of developmental disabilities (DD) using a population-based cohort. Methods: Young adults were interviewed to assess the prevalence of seven Leading Health Indicators: physical activity, overweight and obesity, tobacco use, substance…
Rodriguez, Anthony M.
In my experiences, students with Developmental Disability (DD) are routinely excluded from Algebra and other high-level mathematics courses. People with DD do not have the opportunity to learn Algebra, which may support the understanding and provide purpose for learning money and budgeting skills that, perhaps, could help them avoid financial…
Lucardie, Richard; Sobsey, Dick
Over the past decade, there has been increased interest in crimes against people with developmental disabilities (PWDD). While national and international information has been available on homicides of people in general, little attention has been given to homicides of PWDD specifically. This paper provides a preliminary description of homicides as…
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...
Hilton, Alan; Gerlach, Kent
Presents a position statement of the Board of Directors of the Division on Mental Retardation and Developmental Disabilities that reviews the employment, preparation, and management of paraeducators. The statement addresses role definition, employment and management, legal and ethical responsibilities, job descriptions, paraeducator training, and…
Lin, E.; Balogh, R.; Cobigo, V.; Ouellette-Kuntz, H.; Wilton, A. S.; Lunsky, Y.
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…
Mazzucchelli, Trevor G.; Sanders, Matthew R.
Children with developmental disabilities are at substantially greater risk of developing emotional and behavioural problems compared to their typically developing peers. While the quality of parenting that children receive has a major effect on their development, empirically supported parenting programs reach relatively few parents. A recent trend…
Barton-Hulsey, Andrea; Sevcik, Rose A; Romski, MaryAnn
A number of intrinsic factors, including expressive speech skills, have been suggested to place children with developmental disabilities at risk for limited development of reading skills. This study examines the relationship between these factors, speech ability, and children's phonological awareness skills. A nonexperimental study design was used to examine the relationship between intrinsic skills of speech, language, print, and letter-sound knowledge to phonological awareness in 42 children with developmental disabilities between the ages of 48 and 69 months. Hierarchical multiple regression was done to determine if speech ability accounted for a unique amount of variance in phonological awareness skill beyond what would be expected by developmental skills inclusive of receptive language and print and letter-sound knowledge. A range of skill in all areas of direct assessment was found. Children with limited speech were found to have emerging skills in print knowledge, letter-sound knowledge, and phonological awareness. Speech ability did not predict a significant amount of variance in phonological awareness beyond what would be expected by developmental skills of receptive language and print and letter-sound knowledge. Children with limited speech ability were found to have receptive language and letter-sound knowledge that supported the development of phonological awareness skills. This study provides implications for practitioners and researchers concerning the factors related to early reading development in children with limited speech ability and developmental disabilities.
Collins, Kyla; Staples, Kerri
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.
Bennett, Elizabeth Anne; Kolko, Rachel; Chia, Lichun; Elliott, Jennifer Padden; Kalarchian, Melissa Ann
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
Van der Linde, Berdien W.; van Netten, Jaap J.; Otten, Bert; Postema, Klaas; Geuze, Reint H.; Schoemaker, Marina M.
Background. Children with developmental coordination disorder (DCD) face evident motor difficulties in daily functioning. Little is known, however, about their difficulties in specific activities of daily living (ADL). Objective. The purposes of this study were: (1) to investigate differences
Moraal-van der Linde, Berdien; Netten, Jaap; Otten, Bert; Postema, Klaas; Geuze, Reint; Schoemaker, Marina
Background. Children with developmental coordination disorder (DCD) face evident motor difficulties in daily functioning. Little is known, however, about their difficulties in specific activities of daily living (ADL). Objective. To (a) investigate differences between children with DCD and their
Hirano, Keiko; Aiba, Hideo; Oguro, Katsuhiko
The aim of this study was to investigate the relationship between developmental disabilities and brain perfusion patterns. We performed technetium-99m-ethylcysteinate dimer ( 99m Tc-ECD) single photon emission computed tomography (SPECT) in 30 children with neurological disorders using the Patlak plot method. In children without developmental disabilities, the distribution of regional cortical perfusion evolved in relation to brain maturation. At one month of age, there was a predominant uptake in the perirolandic cortex. Radionuclide uptake in both the parietal and occipital cortices became evident by three months. Uptake in the temporal and frontal cortex increased by 6 and 11 months, respectively. Brain perfusion showed a pattern similar to that of adults by two years of age at the latest. In children with developmental disabilities, developmental changes of brain perfusion were delayed compared to normally developing children. Brain SPECT is a useful tool to assess the brain maturation in children with developmental disabilities. (author)
Juneja, Monica; Jain, Rahul; Singhal, Swati; Mishra, Devendra
To identify the problems faced by parents of children with developmental disabilities in availing rehabilitative services and to find their satisfaction level. This study was carried out at a Child Development Clinic (CDC) located in Northern India. Children with developmental disabilities, who were availing services at CDC for at least last 3 mo and had at least 3 follow-up visits, were enrolled. A questionnaire pertaining to the socio-demographic profile, problems faced in availing services and satisfaction level was filled by the parents of the enrolled children. During the study period, 161 parents filled the questionnaire. 77.6% had some problems in getting the services, the major being difficulty in commuting (50%) and financial constraint (21.7%). More than 80% parents use public transport to reach CDC with 19% travelling more than 50 Km. 29.8% had difficulty in bringing their child to the clinic, either due to severe behavioral problems or physical disability. However, majority of the families were well satisfied with the services as 95% of them graded their satisfaction level at 3 or more on the scale of 0-5. Parents of children with developmental disabilities face many problems in getting rehabilitative services. They travel long distances, face hardships in carrying their child, and lose their day's earnings, apart from spending time and money for their child's therapy. However, most of the parents are well satisfied with the services.
Krysta, Krzysztof; Krzystanek, Marek; Cubała, Wiesław J; Wiglusz, Mariusz S; Jakuszkowiak-Wojten, Katarzyna; Gałuszko-Węgielnik, Maria; Czarnowska-Cubała, Monika; Szarmach, Joanna; Włodarczyk, Adam; Janas-Kozik, Małgorzata
Treatment and rehabilitation of people with intellectual and developmental disabilities is a multidisciplinary challenge, which require implementing new attitudes. The use of modern technology solutions like telepsychiatry or virtual reality may be a valuable addition to the traditional methods. The objective of this review was to explore the usability of new technological solutions in this special population of patients. The search in the PubMed was conducted using the following terms: (intellectual disability (Title/Abstract) OR developmental disability OR learning disorder (Title/Abstract)) AND virtual reality (Title/Abstract) OR telepsychiatry OR telemedicine OR e-mental health AND English (lang) AND (1995/01/01(PDAT): 2017/07/31(PDAT)). Telepsychiatry may be a useful tool in situations, when the direct access to professional assistance is limited, in solving particular problems like e.g. managing challenging behavior, also to support patients' parents and for diagnostic and educational purposes. Virtual reality can be a safe and effective method of improving different skills, developing physical fitness, and enriching the ways of spending the leisure time. Using modern technology is a relatively new and promising field in which new ideas may develop to support the already existing services for patients with intellectual and developmental disabilities.
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.
Tomlinson, M.; Yasamy, M. T.; Emerson, E.; Officer, A.; Richler, D.; Saxena, S.
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…
Fickert, Nancy A; Ross, Diana
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.
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Medeiros, Kristen; Kozlowski, Alison M.; Beighley, Jennifer S.; Rojahn, Johannes; Matson, Johnny L.
Previous research has found that individuals with intellectual disability and/or autism spectrum disorder (ASD), and those with greater symptom severity within these diagnoses, show higher rates of aggressive/destructive behavior, stereotypic behavior, and self-injurious behavior. In this exploratory cross-sectional study, toddlers at-risk for a…
Magda Solange Vanzo Pestun
Full Text Available Nonverbal learning disabilities (NVLD, a clinical condition still little reported in Brazil, are characterized by damages in the visual spatial domains, visual motor integration, fine motor skills, math skills and social and emotional difficulties. Developmental Dyscalculia (DD is a neurodevelopmental disorder that affects basic arithmetic skills acquisition, including storage and recovery of arithmetic facts, calculation fluency and precision and number sense domain. Although both are persistent Math learning disorder/disability, they cause different damages. The objective of this case report is to describe, compare and analyze the neuropsychological profile of two Brazilian children with similar complaints but distinct diagnosis.
An, Jihoun; Hodge, Samuel R
The purpose of this phenomenological inquiry was to explore the experiences and meaning of parental involvement in physical education from the perspectives of the parents of students with developmental disabilities. The stories of four mothers of elementary aged children (3 boys, 1 girl), two mothers and one couple (mother and father) of secondary-aged youth (1 girl, 2 boys) with developmental disabilities, were gathered by using interviews, photographs, school documents, and the researcher's journal. Bronfenbrenner's (2005) ecological system theory provided a conceptual framework to interpret the findings of this inquiry. Three themes emerged from thematic analysis: being an advocate for my child, understanding the big picture, and collaborative partnerships undeveloped in GPE. The findings lend additional support to the need for establishing collaborative partnerships in physical education between home and school environments (An & Goodwin, 2007; Tekin, 2011).
Sonik, Rajan A; Parish, Susan L; Rosenthal, Eliana S
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.
Zachik, Albert A; Naylor, Michael W; Klaehn, Robert L
Child and adolescent psychiatrists are in a unique position to provide administrative and clinical leadership to public agencies. In mental health, services for children and adolescents in early childhood, school, child welfare, and juvenile justice settings, transition-aged youth programs, workforce development, family and youth leadership programs, and use of Medicaid waivers for home- and community-based service system development are described. In child welfare, collaboration between an academic child psychiatry department and a state child welfare department is described. In developmental disabilities, the role of the child and adolescent psychiatrist administrator is described providing administrative leadership, clinical consultation, quality review, and oversight of health and behavioral health plans for persons with developmental disabilities.
Stephenson, Jennifer; Limbrick, Lisa
This article presents a review of the research on the use of mobile touch-screen devices such as PDAs, iPod Touches, iPads and smart phones by people with developmental disabilities. Most of the research has been on very basic use of the devices as speech generating devices, as a means of providing video, pictorial and/or audio self-prompting and…
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...
Martin A. Volker; Elissa H. Dua; Christopher Lopata; Marcus L. Thomeer; Jennifer A. Toomey; Audrey M. Smerbeck; Jonathan D. Rodgers; Joshua R. Popkin; Andrew T. Nelson; Gloria K. Lee
The Gilliam Autism Rating Scale-Second Edition (GARS-2) is a widely used screening instrument that assists in the identification and diagnosis of autism. The purpose of this study was to examine the factor structure, internal consistency, and screening sensitivity of the GARS-2 using ratings from special education teaching staff for a sample of 240 individuals with autism or other significant developmental disabilities. Exploratory factor analysis yielded a correlated three-factor solution si...
Kao, Ying-Chia; Kramer, Jessica M; Liljenquist, Kendra; Tian, Feng; Coster, Wendy J
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.
Methods: In an effort to understand the lives of students with disabilities better, a study which included students with disabilities, lecturers and disability supporting staff was conducted at two South African universities – University of the Free State and University of Venda. The paper takes a snapshot view of four lecturers and their perceptions of the lives of students with disabilities at their respective universities. Results and Conclusion: Although most disability literature report students with disabilities blaming lecturers for their failure to advance their needs, this paper highlights that the education system needs to be supportive to lecturers for the inclusive agenda to be realised. An argument is made for a more comprehensive approach towards a national disability policy in higher education involving many stakeholders. Without a broader understanding of disability, it will be difficult to engage with the complex ways in which inequalities emerge and are sustained.
Hence, the focus of management for People Living With HIV/AIDS (PLWHA) has shifted to issues relating to function and Quality of Life (QoL). Information is scarce on disability issues and quality of life among people living with HIIV/AIDS in Nigeria. This was the premise of this study that assessed the level of disability and ...
Holwerda, Anja; Brouwer, Sandra; de Boer, Michiel R; Groothoff, Johan W; van der Klink, Jac J L
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.
Gallagher, Stephen; Whiteley, Jenny
The present study tested whether parents caring for children with developmental disabilities would have higher blood pressure compared to parents of typically developing children (controls). It also examined the psychosocial factors underlying this observation. Thirty-five parents of children with developmental disability and thirty controls completed standard measures of perceived stress, child challenging behaviours and social support and wore an ambulatory blood pressure (BP) monitor throughout the day, for one day. Relative to controls, parents caring for children with developmental disabilities reported poorer psychosocial functioning and had a higher mean systolic BP. Of the psychosocial predictors, only social support was found to be predictive. Moreover, variations in social support accounted for some of the between group differences with the β for parental group attenuated from .42 to .34 in regression analyses. It appears that social support may influence blood pressure responses in parental caregivers. Finally, our findings underscore the importance of providing psychosocial interventions to improve the health of family caregivers. Copyright © 2012 Elsevier Ltd. All rights reserved.
Price, Richard; Marsh, Abbie J; Fisher, Marisa H
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.
Hsieh, Hsieh-Chun; Lin, Hung-Yu; Chiu, Wen-Hsin; Meng, Ling Fu; Liu, Chun Kai
This study used a novel device to make video games accessible to children with developmental disabilities (DD) by modifying the training software and interfaces to enhance motor training. In the pretest-posttest design, 20 children (13 boys, 7 girls; mean age=5.2 yr) with DD received adaptive upper-limb motor rehabilitation consisting of fifteen 30-min individual sessions 3 times per week for 5 wk. Improvement in Beery-Buktenica Developmental Test of Visual Motor Integration and Peabody Developmental Motor Scales, Second Edition, scores for children with DD indicated significant differences between pretest and posttest. The rehabilitation device modified for the needs of children with DD is effective in improving visual-motor performance of children with DD. Copyright © 2015 by the American Occupational Therapy Association, Inc.
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.
Tachibana, Yoshiyuki; Takehara, Kenji; Kakee, Naoko; Mikami, Masashi; Inoue, Eisuke; Mori, Rintaro; Ota, Erika; Koizumi, Tomoe; Okuyama, Makiko; Kubo, Takahiko
Previous work has suggested that maternal developmental disorder traits related to autism spectrum disorder (ASD) and attention-deficit hyperactivity disorder (ADHD) are significantly associated with child maltreatment. However, there may be other important maternal characteristics that contribute to child maltreatment. We hypothesized that maternal impulse control disability may also affect child maltreatment in addition to maternal developmental disorder traits. We aimed to test this hypothesis via a cohort study performed in Tokyo (n = 1,260). Linear regression analyses using the Behavioural Inhibition/Behavioural Activation Scales, the self-administered short version of the Pervasive Developmental Disorders Autism Society Japan Rating Scale, the short form of the Adult Attention-Deficit Hyperactivity Disorder Self-Report Scale, and the Child Maltreatment Scale, revealed that excessive inhibition of behaviour and affect, which is impulse control disability, is significantly associated with child maltreatment (b = 0.031, p = 0.018) in addition to maternal developmental disorder traits (ASD: b = 0.052, p = 0.004; ADHD: b = 0.178, p child maltreatment, while ADHD was associated (AOR = 1.034, p = 0.022) with severe child maltreatment. These maternal characteristics may inform the best means for prevention and management of child maltreatment cases.
Pinquart, Martin; Pfeiffer, Jens P.
Chronic illnesses and disabilities may impair the attainment of age-typical developmental tasks, such as forming relationships with peers and gaining autonomy. Based on a systematic search in electronic databases and cross-referencing, 447 quantitative empirical studies were included which compared the attainment of developmental tasks of…
Randell, M; Cumella, S
Hospital closure programmes in England have generally sought to attain a fulfilling life for people with an intellectual disability by locating them in domestic-style housing in urban settings. Few have been placed in intentional or 'village' communities. Yet comparative studies of different housing types have found that intentional communities have better or similar outcomes for their residents than dispersed housing or residential clusters on former hospital sites. A possible explanation is the distinctive pattern of social relationships that exist in many intentional communities and the impact this has on the lives of their residents. This paper reports the results of research that explores the perceptions of people with an ID living in an intentional community and the meaning of their community to them. The research used an ethnographic approach to interview a sample of 15 residents in a large intentional community (Botton Village), which is part of the Camphill Movement. Interviews used Makaton, pictures and symbols where required. Respondents included 10 men and 5 women aged between 38 and 78 years. Length of residence in Botton Village ranged from 5 to 50 years. All lived with the families of co-workers and valued these relationships. All but one (who had retired) worked in a diverse range of employment in the village. Almost all were positive about their work. Respondents reported that they took part in both individual and communal leisure activities and all but two had a network of friends. Opportunities for friendship were enhanced by proximity to other people with an ID and a sense of personal security in the village. As in many villages and communities in society in general, these advantages were balanced by some loss of privacy. Results confirm those from earlier studies of intentional communities and suggest that positive outcomes derive from the absence of the overt subordination of residents to staff, the facilitation of friendship with other people
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…
Trute, Barry; Hiebert-Murphy, Diane; Levine, Kathryn
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…
Dukmak, Samir J.; Aburezeq, Ibtehal M.
A significant number of individuals all over the world experience various types of developmental disabilities. Families of these individuals are likely to be impacted by these disabilities in different ways. This research examines the UAE parents' adaptation and stress to the developmental disabilities that their children have as well as examines…
Alwinesh, Merlin Thanka Jemi; Joseph, Rachel Beulah Jansirani; Daniel, Anna; Abel, Julie Sandra; Shankar, Satya Raj; Mammen, Priya; Russell, Sushila; Russell, Paul Swamidhas Sudhakar
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.
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
Mazzucchelli, Trevor G; Sanders, Matthew R
Children with developmental disabilities are at substantially greater risk of developing emotional and behavioural problems compared to their typically developing peers. While the quality of parenting that children receive has a major effect on their development, empirically supported parenting programs reach relatively few parents. A recent trend in parenting intervention research has been the adoption of a public health approach to improve the quality of parenting at a population level. This has involved delivering parenting interventions on a large scale and in a cost-effective manner. Such trials have been demonstrated to reduce negative parenting practices, prevent child maltreatment, and reduce child behavioural and emotional problems. However, these trials have been restricted to parents of children who are developing typically. This paper explores the rational for the extension of a population health approach to parenting interventions for children with developmental disabilities. It is argued that a population-based implementation and evaluation trial of an empirically supported system of interventions is needed to determine whether this approach is viable and can have a positive impact on parents and their children in a disability context. The Stepping Stones Triple P--Positive Parenting Program is presented as an example of a parenting intervention that satisfies the requirements for such a trial. Tasks and challenges of such a trial are discussed. Copyright © 2011 Elsevier Ltd. All rights reserved.
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Chou, Li-Der; Lai, Nien-Hwa; Chen, Yen-Wen; Chang, Yao-Jen; Yang, Jyun-Yan; Huang, Lien-Fu; Chiang, Wen-Ling; Chiu, Hung-Yi; Shin, Haw-Yun
As Internet technologies evolve, their applications have changed various aspects of human life. Here, we attempt to examine their potential impact on services for families with developmentally delayed children. Our research is thus designed to utilize wireless mobile communication technologies, location services, and search technology in an effort to match families of specific needs with potential care providers. Based on the investigation conducted by our counselors, this paper describes a platform for smooth communication between professional communities and families with children with developmental disabilities (CDD). This research also looks into the impact of management of mobile social network services and training on the operation of these services. Interaction opportunities, care, and support to families with CDD are introduced.
A physically disabled individual shares her horror at decisions of parents and doctors to deny medical treatment to handicapped infants. She avers that every child is born with a mix of talents and shortcomings, some more marked than others, and that disability should not be punished. (CL)
Full Text Available OBJECTIVES: To examine the association of living arrangements with functional disability among older persons and explore the mediation of impact factors on the relationship. DESIGN: Cross-sectional analysis using data from Healthy Aging study in Zhejiang Province. PARTICIPANTS: Analyzed sample was drawn from a representative rural population of older persons in Wuyi County, Zhejiang Province, including 1542 participants aged 60 and over in the second wave of the study. MEASUREMENTS: Living arrangements, background, functional disability, self-rated health, number of diseases, along with contemporaneous circumstances including income, social support (physical assistance and emotional support. Instrument was Activities of Daily Living (ADL scale, including Basic Activities Daily Living (BADL and Instrumental Activities of Daily Living (IADL. RESULTS: Living arrangements were significantly associated with BADL, IADL and ADL disability. Married persons living with or without children were more advantaged on all three dimensions of functional disability. Unmarried older adults living with children only had the worst functional status, even after controlling for background, social support, income and health status variables (compared with the unmarried living alone, ß for BADL: -1.262, ß for IADL: -2.112, ß for ADL: -3.388; compared with the married living with children only, ß for BADL: -1.166, ß for IADL: -2.723, ß for ADL: -3.902. In addition, older adults without difficulty in receiving emotional support, in excellent health and with advanced age had significantly better BADL, IADL and ADL function. However, a statistically significant association between physical assistance and functional disability was not found. CONCLUSION: Functional disabilities vary by living arrangements with different patterns and other factors. Our results highlight the association of unmarried elders living with children only and functioning decline comparing with
Povinelli, Daniel J.; And Others
Investigated the ability of young children to recognize themselves in delayed videotapes and recent photographs. Results suggested a significant developmental delay in young children's success on mark tests of self-recognition using delayed feedback as compared to live feedback, which may have important implications for characterizing the…
Burke, Meghan M; Lee, Chung Eun; Arnold, Catherine K; Owen, Aleksa
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.
Smith, Ashlyn L.; Romski, MaryAnn; Sevcik, Rose A.; Adamson, Lauren B.; Barker, R. Michael
This study extended research on the Down syndrome advantage by examining differences in parent stress and parent perceptions of language development between 29 parents of young children with Down syndrome and 82 parents of children with other developmental disabilities. Parents of children with Down syndrome reported lower levels of total stress, child-related stress, and stress surrounding the parent-child interaction. Parents of children in both groups reported that they felt successful in their ability to impact their children’s communication development but did differ on perceptions of difficulty such that parents of children with Down syndrome perceived their children’s communication difficulties as less severe despite the children exhibiting similar language skills. Finally, after accounting for potential explanatory confounding variables, child diagnosis remained a significant predictor of parent stress and perceptions of language development. Results highlight the importance of considering etiology when assisting families raising a child with a disability. PMID:24753637
Harrold, M; Lutzker, J R; Campbell, R V; Touchette, P E
Child Management Training (CMT) involves compliance training with a focus on consistent use of antecedents and consequences. Planned Activities Training (PAT) focuses on teaching parents to plan for and engage in activities with their children. A multiple probe design counterbalancing PAT and CMT showed that PAT and CMT were about equally effective in improving mother-child interactions in four families with children with developmental disabilities. Responses to a social validation questionnaire indicated that parents were satisfied with the services received, and that PAT was the slightly preferred treatment. Prior research demonstrated that PAT enhanced the results of CMT. The practical advantages of PAT over CMT are discussed.
Lindstrom, Lauren; Doren, Bonnie; Miesch, Jennifer
Youth with disabilities face many barriers in making the transition from high school to stable long-term employment. Researchers used case study methodology to examine the career development process and postschool employment outcomes for a sample of individuals with disabilities who were working in living wage occupations 7 to 10 years after…
McArthur, Polly; Burch, Lillian; Moore, Katherine; Hodges, Mary Sue
This article describes interactive learning about independent living for people with disabilities and features the partnership of the College of Nursing and a Center for Independent Living (CIL). Using qualitative descriptive approach, students' written reflections were analyzed. Through "Xtreme Challenge," 82 undergraduate nursing students participated in aspects of independent living as well as identifying barriers. Students were engaged and learned to consider the person before the disability. Moreover, students valued the activity leaders' openness, which facilitated understanding the point of view of a person with disability. The value of partnership was evident as it allowed students to participate in active learning, which led to growth in the affective domain. Students became aware of potential education resources through the CIL. This article will guide educators in designing experiences that teach nursing care at the individual, family, and community level for people living with disabilities. © 2015 Association of Rehabilitation Nurses.
Asperger syndrome (AS) is an autistic spectrum condition that shares the range of social impairments associated with classic autism widely regarded as disabling, while also often giving rise to high levels of ability in areas such as maths, science, engineering and music. The nature of this striking duality of disability and ability is examined, along with its implications for our thinking about disability and the relevance of levels and kinds of disability to reproductive choices. In particular, it may be seen as posing a challenge to John Harris's influential position in reproductive ethics relating to disability. The paper argues that if, as Harris maintains, there is a quite general moral obligation to avoid bringing disabled lives into the world regardless of the level of disability, then AS must be seen as having a strong claim to be exempt from such an obligation. However, a broader critique of Harris's position leads to the conclusion that, in fact, this putative obligation does not exist.
Although there is a world-wide trend towards women with disabilities attempting to establish their own identity in this complex society, their condition remains very different in the developing countries particularly, India. The plight of women with disabilities is very depressing as they face a triple handicap and discrimination due to their disability, besides the gender issues. Violence against women with disabilities can range from neglect to physical abuse to denying them even the traditional roles of marriage and childbearing. This article addresses the problem of sexual assault of women with disabilities in the Indian context, highlighting on some of the loopholes in the Indian legal system. The article has primarily been based on review of various books, articles and government and other related documents. Review of literature has revealed that in majority of the instances a significant portion of perpetrators have been found to be male caregivers followed by the male family members and strangers constitute only a miniscule of the percentage of the abusers. Adding to this legal system has further aggrieved the situation as the criminal law in India has also not adequately addressed the problem of sexual assault of women with disabilities. The article concludes by suggesting possible strategies to reinstall the position of women with disabilities in a community based rehabilitation setting. It advocates the need to create a supportive environment for disclosure of sexual assault and responses to it will be characterised by belief in the victim, dignity and respect. In India, women with disabilities need to be provided with adequate knowledge about sexuality which will equip them to understand that they have been sexually assaulted. There is the need for policy makers to ensure greater accessibility to complaint and redressal mechanisms for women with disabilities. Efforts need to be made to strengthen the legal system and necessary legal aid/help to bring
Full Text Available This paper examines the process under way in Iceland to align national law with the UN Convention on the Rights of Persons with Disabilities, focusing on the Convention’s call for the active involvement of disabled people and their representative organizations in policy and decision making on matters that affect them. The paper draws on comments submitted by Icelandic DPOs on draft legislation intended to replace the existing law on services for disabled people, focusing on comments relating to their ability to participate in and affect the policymaking process. Furthermore, it draws on interviews with leaders of representative organizations of disabled people that solicited their views on the issue. The findings indicate that there is a reluctance on behalf of Icelandic authorities to make changes to the established process, which limits the active participation of disabled people and their representative organizations. The draft legislation has neither been revised to include provisions for expanding the participation of DPOs in policy and decision making, nor to ensure that disabled people themselves participate in the process.
de Castilho, Lia Silva; Abreu, Mauro Henrique Nogueira Guimarães; Pires E Souza, Luiz Gustavo de Almeida; Romualdo, Leiliane Teresinha de Almeida; Souza E Silva, Maria Elisa; Resende, Vera Lúcia Silva
To investigate factors associated with anterior open bite in individuals aged from 2 to 33 years with developmental disabilities. This is a cross-sectional study. A total of 271 dental records were examined. The anterior open bite analyzed was determined based on clinic exam. These variables were also analyzed: gender, age, education level of mother, International Code of Diseases (ICD), mouth breathing, use of anticonvulsant drugs, hyperkinesis, pacifier use, thumb sucking, seizure, and involuntary movements. For the purposes of analysis, the individuals were categorized as being with and without anterior open bite. Variables with a p-value of open bite than nasal breathers. Pacifier users are more likely to have an anterior open bite (3.32-fold, 95% CI: 1.62-6.77). Individuals with reported involuntary movements had a 2.66-fold (95% CI: 1.26-5.63) greater chance of exhibiting anterior open bite. Users of anticonvulsants drugs had a 3.05 (95% CI: 1.57-5.92) greater chance of showing anterior open bite. Involuntary movements, mouth breathing, using anticonvulsant drugs, and using pacifier are factors associated with anterior open bite in patients with developmental disabilities. © 2017 Special Care Dentistry Association and Wiley Periodicals, Inc.
Hurtubise, Karen; Carpenter, Christine
To better understand the learning experiences of parents of children with developmental disabilities and the strategies they develop to support their caregiving role. A qualitative secondary analysis of in-depth interviews with parents of children with developmental disability was conducted to better understand parents' learning experiences and the strategies they developed to use this learning in supporting their children. A foundational thematic analysis process was used to identify the main themes, and the interpretive process was influenced by adult education theories. Findings suggest that participants are highly motivated to learn by a need to understand, to do, and to belong. They also demonstrated varying levels of cognitive, affective, and psychomotor learning. Learning style preferences are evident in participants' narratives and in their self-reported learning strategies. Conceptualizing parents, as adult learners, can be helpful in designing clinical interactions and education initiatives. Knowledge of adult learning principles may enable pediatric therapists to better meet the needs of parents and fulfill their information sharing responsibilities.
Moura, Octávio; Simões, Mário R; Pereira, Marcelino
This study analysed the usefulness of the Wechsler Intelligence Scale for Children-Third Edition in identifying specific cognitive impairments that are linked to developmental dyslexia (DD) and the diagnostic utility of the most common profiles in a sample of 100 Portuguese children (50 dyslexic and 50 normal readers) between the ages of 8 and 12 years. Children with DD exhibited significantly lower scores in the Verbal Comprehension Index (except the Vocabulary subtest), Freedom from Distractibility Index (FDI) and Processing Speed Index subtests, with larger effect sizes than normal readers in Information, Arithmetic and Digit Span. The Verbal-Performance IQs discrepancies, Bannatyne pattern and the presence of FDI; Arithmetic, Coding, Information and Digit Span subtests (ACID) and Symbol Search, Coding, Arithmetic and Digit Span subtests (SCAD) profiles (full or partial) in the lowest subtests revealed a low diagnostic utility. However, the receiver operating characteristic curve and the optimal cut-off score analyses of the composite ACID; FDI and SCAD profiles scores showed moderate accuracy in correctly discriminating dyslexic readers from normal ones. These results suggested that in the context of a comprehensive assessment, the Wechsler Intelligence Scale for Children-Third Edition provides some useful information about the presence of specific cognitive disabilities in DD. Practitioner Points. Children with developmental dyslexia revealed significant deficits in the Wechsler Intelligence Scale for Children-Third Edition subtests that rely on verbal abilities, processing speed and working memory. The composite Arithmetic, Coding, Information and Digit Span subtests (ACID); Freedom from Distractibility Index and Symbol Search, Coding, Arithmetic and Digit Span subtests (SCAD) profile scores showed moderate accuracy in correctly discriminating dyslexics from normal readers. Wechsler Intelligence Scale for Children-Third Edition may provide some useful
Goudie, Anthony; Havercamp, Susan; Jamieson, Barry; Sahr, Timothy
The purpose of this study was to empirically test if siblings of children with disability had higher levels of parent-reported behavioral and emotional functional impairment compared with a peer group of siblings residing with only typically developing children. This was a retrospective secondary analysis of data from the Medical Expenditure Panel Survey. We included only households with at least 2 children to ensure sibling relationships. Two groups of siblings were formed: 245 siblings resided in households with a child with disability and 6564 siblings resided in households with typically developing children. Parents responded to questions from the Columbia Impairment Scale to identify functional impairment in their children. On the basis of parent reports and after adjusting for sibling demographic characteristics and household background, siblings of children with disability were more likely than siblings residing with typically developing children to have problems with interpersonal relationships, psychopathological functioning, functioning at school, and use of leisure time (P siblings of children with disability classified with significant functional impairment was 16.0% at the first measurement period and 24.2% at the second (P siblings of typically developing children there was a smaller percentage increase from 9.5% to 10.3% (P mental health services and, as such, early assessment and interventions to limit increasing severity and short- to long-term consequences need to be addressed. Health care professionals need to consider a family-based health care approach for families raising children with disability.
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.
Tuffrey-Wijne, Irene; Bernal, Jane; Hubert, Jane; Butler, Gary; Hollins, Sheila
Growing numbers of people with learning disabilities are living longer and dying of age related illnesses such as cancer. To explore the experiences of people with learning disabilities who have cancer. The study used participant observation with 13 people with learning disabilities. All had a cancer diagnosis and 10 were terminally ill. Participants were visited regularly at home and in other settings, including hospitals. The main themes were: dependent lives; deprived lives; truth telling and understanding; the importance of families; inexperienced carers and unprepared services; and resilience. To understand the experiences of people with learning disabilities who are dying of cancer, it is important to understand their previous life experiences and key relationships. Healthcare professionals who treat people with respect, dignity and openness can make a positive difference to their care.
Tiago da Silva Alexandre
Full Text Available OBJECTIVE To analyze gender differences in the incidence and determinants of disability regarding instrumental activities of daily living among older adults. METHODS The data were extracted from the Saúde, Bem-Estar e Envelhecimento (SABE – Health, Wellbeing and Ageing study. In 2000, 1,034 older adults without difficulty in regarding instrumental activities of daily living were selected. The following characteristics were evaluated at the baseline: sociodemographic and behavioral variables, health status, falls, fractures, hospitalizations, depressive symptoms, cognition, strength, mobility, balance and perception of vision and hearing. Instrumental activities of daily living such as shopping and managing own money and medication, using transportation and using the telephone were reassessed in 2006, with incident cases of disability considered as the outcome. RESULTS The incidence density of disability in instrumental activities of daily living was 44.7/1,000 person/years for women and 25.2/1,000 person/years for men. The incidence rate ratio between women and men was 1.77 (95%CI 1.75;1.80. After controlling for socioeconomic status and clinical conditions, the incidence rate ratio was 1.81 (95%CI 1.77;1.84, demonstrating that women with chronic disease and greater social vulnerability have a greater incidence density of disability in instrumental activities of daily living. The following were determinants of the incidence of disability: age ≥ 80 and worse perception of hearing in both genders; stroke in men; and being aged 70 to 79 in women. Better cognitive performance was a protective factor in both genders and better balance was a protective factor in women. CONCLUSIONS The higher incidence density of disability in older women remained even after controlling for adverse social and clinical conditions. In addition to age, poorer cognitive performance and conditions that adversely affect communication disable both genders. Acute events
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.
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 ...
Disability and Quality of Life among People Living. With HIV/AIDS in Ibadan, ... activities of daily living as well as challenges with. 7,8 ... infected individuals, their family and the society at large. ... Independence, Social Relationships, Environment ..... efavirenz on neuropsychological performance .... Acta paul. enferm. 2015 ...
Kunst Anton E
Full Text Available Abstract Background To avoid strong declines in the quality of life due to population ageing, and to ensure sustainability of the health care system, reductions in the burden of disability among elderly populations are urgently needed. Life style interventions may help to reduce the years lived with one or more disabilities, but it is not fully understood which life style factor has the largest potential for such reductions. Therefore, the primary aim of this paper is to compare the effect of BMI, smoking and alcohol consumption on life expectancy with disability, using the Sullivan life table method. A secondary aim is to assess potential improvement of the Sullivan method by using information on the association of disability with time to death. Methods Data from the Dutch Permanent Survey of the Living Situation (POLS 1997-1999 with mortality follow-up until 2006 (n = 6,446 were used. Using estimated relative mortality risks by risk factor exposure, separate life tables were constructed for groups defined in terms of BMI, smoking status and alcohol consumption. Logistic regression models were fitted to predict the prevalence of ADL and mobility disabilities in relationship to age and risk factor exposure. Using the Sullivan method, predicted age-specific prevalence rates were included in the life table to calculate years lived with disability at age 55. In further analysis we assessed whether adding information on time to death in both the regression models and the life table estimates would lead to substantive changes in the results. Results Life expectancy at age 55 differed by 1.4 years among groups defined in terms of BMI, 4.0 years by smoking status, and 3.0 years by alcohol consumption. Years lived with disability differed by 2.8 years according to BMI, 0.2 years by smoking and 1.6 by alcohol consumption. Obese persons could expect to live more years with disability (5.9 years than smokers (3.8 years and drinkers (3.1 years. Employing
Balogh, Robert; Lin, Elizabeth; Dobranowski, Kristin; Selick, Avra; Wilton, Andrew S; Lunsky, Yona
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.
Renwick, Rebecca; Schormans, Ann Fudge; Shore, Deborah
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.
Shapiro, Michele; Melmed, Raphael N; Sgan-Cohen, Harold D; Parush, Shula
The aim of this study was to evaluate the effect of a sensory-adapted dental environment (SADE) on anxiety, relaxation, and cooperation of children with developmental disabilities (CDDs). Pharmacological treatment has been widely used to reduce anxiety, but nonpharmacological methods may be similarly effective. The standardized clinical situation chosen was a dental hygiene cleaning. A SADE was structured. Sixteen CDDs participated in an open cross-over intervention trial measuring behavioral and psychophysiological variables. There was a substantial increase in relaxation and cooperation in the SADE as opposed to the regular dental environment (RDE). This was reflected by: mean duration of anxious behaviors (SADE = 9.04 minutes vs. RDE = 23.44 minutes; P RDE = 15.50; P RDE = 1.94; P RDE = 446; P RDE=763; P < .004). The findings indicate the potential importance of considering the sensory-adapted environment as a preferable dental environment for this population.
Jepsen, Ruthanne H; VonThaden, Karen
A cognitive education program was developed to facilitate acquisition of cognitive skills and address the learning deficits of adolescent students with neurological, developmental disabilities, and autism. This study examined the outcomes of incorporating mediated cognitive education into special education classrooms. Cognitive education provided cognitive training utilizing REHABIT materials through mediated teaching. Following a matched pair model, forty-six students were assigned to either a treatment or a control group. All students received weekly instruction in Individual Educational Program (IEP) goals. Curriculum areas included IEP objectives in reading, math, social skills, health, science and social studies. Students in the control group received regular classroom instruction. Students in the treatment group participated in cognitive educated one hour per week replacing thirty minutes of reading and thirty minutes of math. Pre and posttest comparisons on measures of intelligence, achievement and adaptive behavior showed those students in the treatment group attained higher scores across measures.
Hamdani, Yani; Ary, Ayelet; Lunsky, Yona
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…
Dart, Evan H.; Radley, Keith C.; Mason, Benjamin A.; Allen, Justin P.
Students with developmental disabilities have been found to exhibit higher rates of problem behavior in the classroom than their typically developing peers. Effectively addressing these students' behavior concerns requires the identification of interventions that can be implemented in an educational setting. Furthermore, matching intervention…
Hess, Mailee; Campagna, Elizabeth J.; Jensen, Kristin M.
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…
O'Neill, Linda P.; Murray, Lindsay E.
Adult siblings of individuals with developmental disabilities often experience higher levels of anxiety than individuals in the general population. The present study tested whether perceived parenting could mediate the relationship between attachment styles and anxiety in the sibling group compared to a control group. Little association was found…
Halstead, Elizabeth; Ekas, Naomi; Hastings, Richard P.; Griffith, Gemma M.
There is variability in the extent to which mothers are affected by the behavior problems of their children with developmental disabilities (DD). We explore whether maternal resilience functions as a protective or compensatory factor. In Studies 1 and 2, using moderated multiple regression models, we found evidence that maternal resilience…
Parish, Susan L.
A focus group study was conducted to develop an understanding of the experiences of mothers who are trying to balance employment with caring for an adolescent with developmental disabilities. Mothers reported facing considerable difficulties balancing work and caregiving responsibilities because support services rapidly declined when their child…
Cobigo, V.; Ouellette-Kuntz, H.; Balogh, R.; Leung, F.; Lin, E.; Lunsky, Y.
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…
Callow, Ella; Tahir, Munazza; Feldman, Maurice
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…
Francis, Grace L.; Gordon, Sarah; Kliethermes, Andrew J.; Regester, April; Baldini, Deborah; Grant, Amber
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…
Flores, Margaret M.; Nelson, Cynthia; Hinton, Vanessa; Franklin, Toni M.; Strozier, Shaunita D.; Terry, LaTonya; Franklin, Susan
There is limited research demonstrating Direct Instruction (DI) as an effective reading comprehension intervention for students with autism spectrum disorders (ASD) and developmental disabilities (DD). Previous research has shown that DI, when portions of the program were implemented, resulted in increased skills (Flores & Ganz, 2007; Flores…
Jackson, Jeffrey B.; Roper, Susanne Olsen
Utilizing grounded theory qualitative research methods, a model was developed for describing parental adaptation after voluntary placement of a child with severe or profound developmental disabilities in out-of-home care. Interviews of parents from 20 families were analyzed. Parents' cognitive appraisals of placement outcomes were classified…
Dekker, Marielle C.; Nunn, Russell J.; Einfeld, Stewart E.; Tonge, Bruce J.; Koot, Hans M.
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…
Campbell, Edward M.; Fortune, Jon; Severance, Donald; Holderegger, John; Fortune, Barbara
A database was assembled from data collected on all people served by the Developmental Disabilities divisions of Nebraska, South Dakota, and Wyoming, including state institutions and state-funded programs (n=5,928). Information included provider expenditures associated with each individual, allocations made by individual reimbursement rates,…
Raphael, Dennis; And Others
A conceptual model of quality of life, developed at the Centre for Health Promotion at the University of Toronto (Canada), and associated instrumentation for collecting data from persons with developmental disabilities are presented. Results from a preliminary study with 41 participants support the reliability and validity of the model's…
Moon, Sherril; Simonsen, Monica L.; Neubert, Debra A.
The purpose of this exploratory study was to survey community rehabilitation providers (CRPs) to determine their perceptions of the skills, experiences, and information that transitioning youth with developmental disabilities (DD) and their families need to access supported employment (SE) services. Supervisors of SE from 12 CRPs across one state…
Woodman, Ashley C.; Mawdsley, Helena P.; Hauser-Cram, Penny
Parents of children with developmental disabilities (DD) are at increased risk of experiencing psychological stress compared to other parents. Children's high levels of internalizing and externalizing problems have been found to contribute to this elevated level of stress. Few studies have considered the reverse direction of effects, however, in…
van der Meer, Larah; Kagohara, Debora; Achmadi, Donna; Green, Vanessa A.; Herrington, Christina; Sigafoos, Jeff; O'Reilly, Mark F.; Lancioni, Giulio E.; Lang, Russell; Rispoli, Mandy
Anecdotal reports suggest that individuals with developmental disabilities who lack speech may be enabled to communicate through the use of a new iPod-based communication device. However, there appear to be limited empirical data demonstrating successful use of this new device by such individuals. This study was designed to provide empirical…
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…
Chi, Donald L.; Momany, Elizabeth T.; Jones, Michael P.; Kuthy, Raymond; Damiano, Peter C.
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…
Pieters, Stefanie; Roeyers, Herbert; Rosseel, Yves; Van Waelvelde, Hilde; Desoete, Annemie
A relationship between motor and mathematical skills has been shown by previous research. However, the question of whether subtypes can be differentiated within developmental coordination disorder (DCD) and/or mathematical learning disability (MLD) remains unresolved. In a sample of children with and without DCD and/or MLD, a data-driven…
Houwen, Suzanne; Visser, Linda; van der Putten, Annette; Vlaskamp, Carla
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
Breau, Lynn M.; Camfield, Carol S.
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…
Dammeyer, Jesper; Koppe, Simo
Research in social interaction and nonverbal communication among individuals with severe developmental disabilities also includes the study of body movements. Advances in analytical technology give new possibilities for measuring body movements more accurately and reliably. One such advance is the Qualisys Motion Capture System (QMCS), which…
Stothers, M. E.; Cardy, J. Oram
Asperger syndrome (AS) and nonverbal learning disabilities (NLD) are developmental disorders in which linguistic ability is reported to be stronger than in disorders from which they must be distinguished for diagnosis. Children and adults with AS and NLD share pragmatic weaknesses, atypical social behaviours, and some cognitive features. To date,…
Kagohara, Debora M.; Sigafoos, Jeff; Achmadi, Donna; van der Meer, Larah; O'Reilly, Mark F.; Lancioni, Giulio E.
We evaluated an intervention procedure for teaching three students with developmental disabilities to independently operate a portable multimedia device (i.e., an iPod Touch[R]) to listen to music. The intervention procedure included the use of video modeling, which was presented on the same iPod Touch[R] that the students were taught to operate…
Arthanat, Sajay; Curtin, Christine; Knotak, David
This study examined the use of the Apple iPad for learning by children with developmental disabilities (DD), including those on the autism spectrum. A single case design was used to record the participation of four students with DD when taught with their standard computer at baseline, followed by the introduction of the iPad. A six-component…
Skouge, James R.; Kelly, Mary L.; Roberts, Kelly D.; Leake, David W.; Stodden, Robert A.
This paper focuses on "technologies for voice" that are related to the self-determination of youth with developmental disabilities. The authors describe a self-determination model that values family-focused, community-referenced pedagogies employing "new media" to give voice to youth and their families. In line with the adage that a picture is…
Heller, Tamar; Arnold, Catherine K.; van Heumen, Lieke; McBride, Elizabeth L.; Factor, Alan
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…
Salvador-Carulla, Luis; Reed, Geoffrey M; Vaez-Azizi, Leila M; Cooper, Sally-Ann; Martinez-Leal, Rafael; Bertelli, Marco; Adnams, Colleen; Cooray, Sherva; Deb, Shoumitro; Akoury-Dirani, Leyla; Girimaji, Satish Chandra; Katz, Gregorio; Kwok, Henry; Luckasson, Ruth; Simeonsson, Rune; Walsh, Carolyn; Munir, Kemir; Saxena, Shekhar
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.
Lancioni, G.E.; O'Reilly, M.F.; Cuvo, A.J.; Singh, N.N.; Sigafoos, J.; Didden, H.C.M.
This paper provides an overview of the literature dealing with the use of the Picture Exchange Communication System (PECS) and voice output communication aids (VOCAs) for promoting the performance of requests by students with developmental disabilities. Computerized and manual searches were carried
Hart, Stephanie L.; Banda, Devender R.
Picture Exchange Communication System (PECS) is a picture-based communication strategy used to teach communication skills to persons with developmental disabilities including autism. This article systematically reviews 13 published single-subject studies to examine the effectiveness of PECS, the effects of PECS on speech and problem behaviors,…
Conklin, Carl G.; Mayer, G. Roy
The purpose of this study is to evaluate the effects of "Picture Exchange Communication System" (PECS) training, using a multiple baseline design on the independent initiations of three adults with developmental disabilities and severe communication deficits. All participants increased their independent initiations, although at different…
Lancioni, Giulio E.; O'Reilly, Mark F.; Cuvo, Anthony J.; Singh, Nirbhay N.; Sigafoos, Jeff; Didden, Robert
This paper provides an overview of the literature dealing with the use of the Picture Exchange Communication System (PECS) and voice output communication aids (VOCAs) for promoting the performance of requests by students with developmental disabilities. Computerized and manual searches were carried out to identify the studies published during the…
Parish, Susan L.; Rose, Roderick A.; Swaine, Jamie G.
Background: Understanding how financial well-being changes through the life course of caregiving parents of children with developmental disabilities is critically important. Methods: We analyse SIPP (U.S. Census Bureau) data to describe income poverty, asset poverty, income, net worth, and liquid assets of US parents (N = 753) of children with…
Ohtake, Yoshihisa; Takeuchi, Ai; Watanabe, Kentaro
This study investigated the effectiveness of video self-modeling (VSM) for eliminating the public undressing of two elementary-aged students with developmental disabilities during urination. A multiple-probe design across participants revealed that the degree of exposed body parts decreased immediately after introduction of VSM. However, exposure…
McDonald, Katherine; Patka, Mazna
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…
Smith, Ashlyn L.; Romski, MaryAnn; Sevcik, Rose A.
This study examined communication interaction patterns when one sibling had a developmental disability as well as the role of communication skills in sibling relationship quality. Thirty sibling dyads were categorized into one of three communication status groups: emerging, context-dependent, and independent communicators. Independent…
Singer, George H. S.
Meta-analysis was used to synthesize findings from comparative studies of depression in mothers of children with and without developmental disabilities. Effect sizes were determined for 18 studies conducted between 1984 and 2003. A weighted effect size of 0.39 indicated an elevated level of depression in mothers of children with developmental…
Chan, Wai; Smith, Leann E.; Greenberg, Jan S.; Hong, Jinkuk; Mailick, Marsha R.
The present investigation explored long-term relationships of behavioral symptoms of adolescents and adults with developmental disabilities with the mental health of their mothers. Fragile X premutation carrier mothers of an adolescent or adult child with fragile X syndrome (n = 95), and mothers of a grown child with autism (n = 213) were…
Luiselli, James K.; St. Amand, CarrieAnne; MaGee, Christine; Sperry, James M.
We describe a training program to teach applied behavior analysis (ABA) knowledge competencies to paraprofessional staff (N = 47) at a habilitation services agency for adults with developmental disabilities. Before and following training, staff completed assessment of knowledge tests for three content areas: basic learning principles,…
Odluyurt, Serhat; Tekin-Iftar, Elif; Ersoy, Gulhan
The purpose of this study was to investigate the effects of school counselor supervised peer tutoring intervention on meeting IEP outcomes of six inclusion students with developmental disabilities in a public elementary and secondary school. The effectiveness of this intervention was evaluated by using multiple probe design across students.…
White, Susan W.; Smith, Laura A.; Schry, Amie R.
Assessment of global functioning is an important consideration in treatment outcome research; yet, there is little guidance on its evidence-based assessment for children with autism spectrum disorders. This study investigated the utility and validity of clinician-rated global functioning using the Developmental Disability-Child Global Assessment…
Seok, Soonhwa; DaCosta, Boaventura; Yu, Byeong Min
The present study compared a spelling practice intervention using a tablet personal computer (PC) and picture cards with three students diagnosed with developmental disabilities. An alternating-treatments design with a non-concurrent multiple-baseline across participants was used. The aims of the present study were: (a) to determine if…
Petner-Arrey, Jami; Howell-Moneta, Angela; Lysaght, Rosemary
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.
Grein, K A; Glidden, L M
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.
Full Text Available Yu-Pei Tsai,1,2 Li-Chen Tung,1,3 Ya-Chen Lee,4 Yu-Lin Wang,1,5 Yun-Shan Yen,1 Kuan-Lin Chen4,6 1Department of Physical Medicine and Rehabilitation, Chi-Mei Medical Center, Tainan, 2Department of Special Education, National Chiayi University, Chiayi, 3School of Medicine, Chung Shan Medical University, Taichung, 4Department of Occupational Therapy, College of Medicine, National Cheng Kung University, 5Department of Sports Management, Chia Nan University of Pharmacy and Science, 6Department of Physical Medicine and Rehabilitation, National Cheng Kung University Hospital, College of Medicine, National Cheng Kung University, Tainan, Taiwan Objective: The objective of this study was to examine the responsiveness of the Comprehensive Developmental Inventory for Infants and Toddlers (CDIIT in children with developmental disabilities (DD.Methods: The responsiveness of a measure is its ability to detect change over time, and it is fundamental to an outcome measure for detecting changes over time. We compared the responsiveness of four types of scores (ie, raw scores, developmental ages [DAs], percentile ranks [PRs], and developmental quotients [DQs] in the five subtests of the CDIIT. The CDIIT was administrated three times at intervals of 3 months on 32 children with DD aged between 5 months and 64 months (mean =30.6, standard deviation [SD] =17.8. The CDIIT is a pediatric norm-referenced assessment commonly used for clinical diagnosis of developmental delays in five developmental areas: cognition, language, motor, social, and self-care skills. The responsiveness was analyzed using three methods: effect size, standardized response mean, and paired t-test.Results: The effect size results showed that at the 3-month and 6-month follow-ups, responsiveness was small or moderate in the raw scores and DAs of most of the subtest scores of the CDIIT, but the level of responsiveness varied in the PRs and DQs. The standardized response mean results of the 3-month
Burke, Meghan M; Hodapp, Robert M
Although mothers of children with intellectual and developmental disabilities (IDD) experience high levels of stress and schools constitute an important resource, the relation remains unknown between maternal stress and educational services. Responding to a national, web-based survey, 965 mothers of students with disabilities completed a 163-item questionnaire about parent stress. We examined which child, parent, and parent-school characteristics correlated with maternal stress. Mothers with lower stress levels reported better parent-school relationships and low levels of parent advocacy. However, lower stress levels were predominantly shown by mothers with good-to-excellent parent-school relationships (vs. poor-to-fair partnerships) and who engaged in virtually no (vs. any) advocacy activities. Lower maternal stress levels were also noted when children had fewer behavior problems, Down syndrome, and did not have autism. Less stress was also reported by mothers who had not enacted procedural safeguards, were minorities, and rated themselves lower on neuroticism and were more extroverted, dependable, and open to new experiences. This study has important implications for practitioners and researchers.
Aman, Michael G.; Smith, Tristram; Arnold, L. Eugene; Corbett-Dick, Patricia; Rameshwari.Tumuluru; Hollway, Jill A.; Hyman, Susan L.; Mendoza-Burchamm, Marissa; Pan, Xueliang; Mruzek, Daniel W.; Lecavalier, Luc; Levato, Lynne; Silverman, Laura B.; Handen, Benjamin
This review summarizes the pharmacokinetic characteristics, pharmacodynamic properties, common side effects, and clinical advantages and disadvantages associated with atomoxetine (ATX) treatment in typically developing children and adults with ADHD. Then the clinical research to date in developmental disabilities (DD), including autism spectrum disorders (ASD), is summarized and reviewed. Of the 11 relevant reports available, only two were placebo-controlled randomized clinical trials, and both focused on a single DD population (ASD). All trials but one indicated clinical improvement in ADHD symptoms with ATX, although it was difficult to judge the magnitude and validity of reported improvement in the absence of placebo controls. Effects of ATX on co-occurring behavioral and cognitive symptoms were much less consistent. Appetite decrease, nausea, and irritability were the most common adverse events reported among children with DD; clinicians should be aware that, as with stimulants, irritability appears to occur much more commonly in persons with DD than in typically developing individuals. Splitting the dose initially, starting below the recommended starting dose, and titrating slowly may prevent or ameliorate side effects. Patience is needed for the slow build-up of benefit. Conclusions: ATX holds promise for managing ADHD symptoms in DD, but properly controlled, randomized clinical trials of atomoxetine in intellectual disability and ASD are sorely needed. Clinicians and researchers should be vigilant for emergence of irritability with ATX treatment. Effects of ATX on cognition in DD are virtually unstudied. PMID:24732041
Many young children with developmental disabilities (DD) have significant delays in social, communication, and play skills. For those children learning to use augmentative and alternative communication (.AAC% successful social interactions with peers will require explicit instruction on the same system for both communication partners. Peer-mediated (PM) interventions are recommended best practice based on more than 30 years of research with young children with autism and other DDs. Integrating direct AAC instruction within PM programs to advance social reciprocity in typical preschool routines is a necessary and important next step for young AAC users. In this article, I will summarize the design and outcomes of two PM AAC studies documenting positive social outcomes for preschool children with severe autism. I will also teach } peer partners how to use AAC highlight strategies to recruit peers without disabilities systems (e.g., Picture Exchange Communication System [PECS], Speech Generating Devices [SGDs]), and engineer the preschool classroom for successful AAC communication. I will describe data collection procedures for measuring changes in reciprocal child and peer social communication interactions.
Flanagan, O; Nualláin, S O
This is a retrospective study of children under six years of age referred to the Brothers of Charity Early Intervention Services in County Galway, a service that caters for children under 6 years with learning disabilities. The aim in doing this study was to assess the value of routine developmental screening in identifying children with learning difficulties. This study also investigates the patterns and sources of referral to the remedial services provided by the Brothers of Charity and highlights possible avoidable delays in referral. The results showed that many children were referred for remedial services late. The reasons for late referral included late identification of some children with problems, insufficient co-ordination of community-based services and a lack of awareness of the importance of early intervention in some cases. As some communication disorders such as autism, autistic spectrum disorders and specific language delay may not express themselves until the later part of the second year of life, the 18-24 month developmental assessment is of vital importance. However identification of these disorders can present difficulties and may call for additional training for professionals involved in the developmental screening of children in that age group. The interval between initial identification and referral for remedial care in many cases was more than twelve months. We propose that, in order to minimize this time, children requiring a more in-depth assessment should be assessed by a community-based multidisciplinary team, enabling integrated assessment by the different disciplines and thus speedier referral to remedial services.
Takemasa, Seiichi; Abe, Yoko; Nagao, Toru; Murakami, Masahito; Koeda, Hideki; Naruse, Susumu; Gotou, Makoto; Uesugi, Masayuki; Inoue, Yuri; Nanba, Yoshihumi
[Purpose] This study explored the roles of physical therapists (PTs) in living environment maintenance, which is essential for living securely and stably at home, and examines how physical therapists can fulfill these roles more efficiently and effectively. [Subjects and Methods] A questionnaire on living environment maintenance was given to PTs working at randomly selected hospitals, health care facilities for the elderly requiring long-term care, home-visit nursing stations, and other such facilities and directly providing physical therapy to the home-bound elderly disabled. The subjects of the study were 77 PTs who returned valid responses. [Results] For awareness of systems for living environment maintenance, PTs were more aware of the system based on the Long-Term Care (LTC) Insurance Act than the system based on the Act on Welfare for the Home-Bound Elderly Disabled. PTs who have worked at two or more types of medical, welfare, and intermediate institutions were more aware of such systems than PTs who have worked at only one type. For PTs handling living environment maintenance for the home-bound elderly disabled, approximately 80% of respondents answered that they have handled some living environment maintenance, and PTs with longer clinical experience have handled more living environment maintenance cases. [Conclusion] The results demonstrated that PTs understand their living environment maintenance work well and handle the work. The results, however, also suggested that educational and operational improvements are urgently required for PTs handling living environment maintenance essential for the lives of the home-bound elderly disabled.
Alary Gauvreau, Christine; Kairy, Dahlia; Mazer, Barbara; Guindon, Andréanne; Le Dorze, Guylaine
After rehabilitation, it is not clear the extent to which persons living with a disability return to their former activities in the community, such as going to shopping malls. Rehabilitation professionals are faced with the challenge to adequately prepare their clients to resume community participation. The purpose of this study was to identify rehabilitation strategies aimed at preparing clients to engage in activities in shopping malls. Twenty-two participants including 16 rehabilitation clinicians and 6 persons living with a disability participated in four nominal group sessions. Participants were questioned on current or potential rehabilitation strategies carried out to enhance participation in shopping malls for persons living with a disability. Discussions were audio-recorded and qualitative content analysis was conducted. Participants mentioned strategies that were either carried out by the clinician, or in collaboration with other parties. The latter type of strategies was either carried out with the collaboration of the client, the interdisciplinary team, the relatives, or community organizations. Rehabilitation clinicians have a role to play in preparing persons living with a disability to resume activities in a shopping mall. Additionally, therapeutic interventions in community settings may enhance the participation of rehabilitation clients in their everyday activities. Implications for rehabilitation Many strategies are currently used in rehabilitation to prepare persons living with a disability to resume shopping activities. Clinicians could implement shopping-oriented rehabilitation strategies with the client and/or with other rehabilitation partners. Involving clients in activities related to shopping might enhance their participation in shopping malls after rehabilitation. Rehabilitation clinicians can be facilitators for people living with a disability to reach optimal participation.
data sources in the community. Multiple data sources are included, ranging from general pediatric health clinics to specialized programs for children with developmental disabilities. In addition, many ADDM sites also review and abstract records of children receiving special education services in public schools. In the second phase of the study, all abstracted evaluations are reviewed by trained clinicians to determine ASD case status. Because the case definition and surveillance methods have remained consistent across all ADDM surveillance years to date, comparisons to results for earlier surveillance years can be made. This report provides updated ASD prevalence estimates from the 2008 surveillance year, representing 14 ADDM areas in the United States. In addition to prevalence estimates, characteristics of the population of children with ASDs are described, as well as detailed comparisons of the 2008 surveillance year findings with those for the 2002 and 2006 surveillance years. For 2008, the overall estimated prevalence of ASDs among the 14 ADDM sites was 11.3 per 1,000 (one in 88) children aged 8 years who were living in these communities during 2008. Overall ASD prevalence estimates varied widely across all sites (range: 4.8-21.2 per 1,000 children aged 8 years). ASD prevalence estimates also varied widely by sex and by racial/ethnic group. Approximately one in 54 boys and one in 252 girls living in the ADDM Network communities were identified as having ASDs. Comparison of 2008 findings with those for earlier surveillance years indicated an increase in estimated ASD prevalence of 23% when the 2008 data were compared with the data for 2006 (from 9.0 per 1,000 children aged 8 years in 2006 to 11.0 in 2008 for the 11 sites that provided data for both surveillance years) and an estimated increase of 78% when the 2008 data were compared with the data for 2002 (from 6.4 per 1,000 children aged 8 years in 2002 to 11.4 in 2008 for the 13 sites that provided data for both
Mori, Kentaro; Kaiho, Yu; Tomata, Yasutake; Narita, Mamoru; Tanji, Fumiya; Sugiyama, Kemmyo; Sugawara, Yumi; Tsuji, Ichiro
To test the hypothesis that elderly persons who feel ikigai (a sense of life worth living) have a lower risk of incident functional disability than those who do not. Recent studies have suggested that ikigai impacts on mortality. However, its impact upon disability is unknown. The aim of the present study was to investigate the association between ikigai and incident functional disability among elderly persons. We conducted a prospective cohort study of 830 Japanese elderly persons aged ≥70 years as a comprehensive geriatric assessment in 2003. Information on ikigai was collected by self-reported questionnaire. Data on functional disability were retrieved from the public Long-term Care Insurance database in which participants were followed up for 11 years. Hazard ratios (HRs) and 95% confidence intervals (CIs) for incidence of functional disability were calculated for three groups delineated according to the presence of ikigai (“no”, “uncertain” or “yes”) using the Cox proportional hazards regression model. The 11-year incidence of functional disability was 53.3% (442 cases). As compared with the “no” group, the multiple-adjusted HR (95% CI) of incident functional disability was 0.61 (0.36–1.02) for the “uncertain” group and 0.50 (0.30–0.84) for the “yes” group. A stronger degree of ikigai is significantly associated with a lower risk of incident functional disability. Copyright © 2017 Elsevier Inc. All rights reserved.
Lin, Elizabeth; Balogh, Robert; McGarry, Caitlin; Selick, Avra; Dobranowski, Kristin; Wilton, Andrew S; Lunsky, Yona
Describe the prevalence of substance-related and addictive disorders (SRAD) in adults with intellectual and developmental disabilities (IDD) and compare the sociodemographic and clinical characteristics of adults with IDD and SRAD to those with IDD or SRAD only. Population-based cohort study (the Health Care Access Research and Development Disabilities (H-CARDD) cohort). All legal residents of Ontario, Canada. 66 484 adults, aged 18-64, with IDD identified through linked provincial health and disability income benefits administrative data from fiscal year 2009. 96 589 adults, aged 18-64, with SRAD but without IDD drawn from the provincial health administrative data. Sociodemographic (age group, sex, neighbourhood income quintile, rurality) and clinical (psychiatric and chronic disease diagnoses, morbidity) characteristics. The prevalence of SRAD among adults with IDD was 6.4%, considerably higher than many previous reports and also higher than found for adults without IDD in Ontario (3.5%). Among those with both IDD and SRAD, the rate of psychiatric comorbidity was 78.8%, and the proportion with high or very high overall morbidity was 59.5%. The most common psychiatric comorbidities were anxiety disorders (67.6%), followed by affective (44.6%), psychotic (35.8%) and personality disorders (23.5%). These adults also tended to be younger and more likely to live in the poorest neighbourhoods compared with adults with IDD but no SRAD and adults with SRAD but no IDD. SRAD is a significant concern for adults with IDD. It is associated with high rates of psychiatric and other comorbidities, indicating that care coordination and system navigation may be important concerns. Attention should be paid to increasing the recognition of SRAD among individuals with IDD by both healthcare and social service providers and to improving staff skills in successfully engaging those with both IDD and SRAD. Published by the BMJ Publishing Group Limited. For permission to use (where not
Ouyang, Zheng; Chong, Alice M L; Ng, Ting Kin; Liu, Susu
Previous research has rarely examined the intervening and buffering effects of leisure on the relationship between age-related stress and health among institutionalized elders, especially in the Chinese context. This study thus examines the extent to which participation in leisure activities mediates and moderates the impact of functional disability on depression among older adults living in residential care homes in China. A total of 1429 participants (858 men) aged over 60 living in residential care homes, of which 46.1% experienced depression using a cut-off score ≥ 5 on the 15-item Geriatric Depression Scale, were selected from a national survey across China by using the probability proportional to size sampling method. The findings showed that depression was positively predicted by functional disability and negatively predicted by participation in leisure activities. The results of the mediation analysis showed that participation in leisure activities partially mediated the relationship between functional disability and depression. Functional disability predicted depression both directly and indirectly through its negative influence on participation in leisure activities. Participation in leisure activities also significantly buffered the relationship between functional disability and depression such that the impact of functional disability was weaker for those who participated in leisure activities more frequently. These results provide support for the mediating and moderating roles of leisure in the stress-health relationship among institutionalized elders. To enhance residents' psychological health, residential care homes are recommended to organize more leisure activities.
Moone, Rajean Paul; Lightfoot, Elizabeth
Centers for independent living (CILs) provide critical supports, services, and advocacy for assisting people with disabilities in living independently. As there is a rapidly increasing population of older people with disabilities, many CILs are now considering how to actively engage older adults in their organizations. This study utilized a survey of older people with disabilities to help identify social marketing techniques that community organizations like CILs can use to effectively reach older people with disabilities. Utilizing the components of the social marketing mix in designing outreach efforts, including a critical examination of product, place, price, participants, and partnering, CILs and other community agencies can better reach older adults with disabilities.
Hinckson, Erica Aneke; Curtis, Amy
Accurate assessment of physical activity is necessary in determining levels of physical activity in children living with intellectual disability (ID) and assessing effectiveness of intervention programmes. A systematic review of measures of physical activity in children with ID was undertaken using the PRISMA guidelines. MEDLINE-PubMed, Scopus,…
Klijs, B.; Mackenbach, J.P.; Kunst, A.E.
To avoid strong declines in the quality of life due to population ageing, and to ensure sustainability of the health care system, reductions in the burden of disability among elderly populations are urgently needed. Life style interventions may help to reduce the years lived with one or more
B. Klijs (Bart); J.P. Mackenbach (Johan); A.E. Kunst (Anton)
textabstractBackground: To avoid strong declines in the quality of life due to population ageing, and to ensure sustainability of the health care system, reductions in the burden of disability among elderly populations are urgently needed. Life style interventions may help to reduce the years lived
The aim of this thesis is to investigate the effects of building design tools on acoustical quality parameters in living rooms for adults with intellectual disabilities (ID) and develop acoustical design guidelines for architects. This study is specifically concerned with the validation of
Very little research is published on teaching music to students with learning disabilities. Nevertheless, federal law mandates that instruction of such students take place in all public schools. The purpose of this study was to investigate the lived experiences of four secondary instrumental music teachers who teach five students with learning…
Wu, Li-Wei; Lin, Lan-Ping; Chen, Si-Fan; Hsu, Shang-Wei; Loh, Ching-Hui; Wu, Chia-Ling; Lin, Jin-Ding
The study aims to explore knowledge and attitudeSs regarding cervical cancer screening and to examine its determinants based on the perspectives of Taiwanese women with physical disabilities living in the community. A cross-sectional survey was employed in the study, and we recruited 498 women aged more than 15 years who were officially registered…
Forrester-Jones, Rachel; Beecham, Jennifer K.; Barnoux, Magali; Oliver, David; Couch, Elyse; Bates, Claire
Background: People with intellectual disabilities have a shorter life expectancy, but healthcare improvements mean that they are beginning to live longer, with associated health difficulties. This means that there is an urgent need to focus research on ageing as well as end-of-life care. This study aimed to explore a specialist intellectual…
Hylkema, T.; Vlaskamp, C.
Background: Although about 15 to 50 percent of people with intellectual disabilities (ID) living in residential settings suffer from sleep problems, scant attention is paid to these problems. Most available studies focus on pharmaceutical solutions. In this study we focus on improving sleep in people with intellectual disabilities living in…
Rosenberg, Angela; Margolis, Lewis H; Umble, Karl; Chewning, Linda
This study describes the effects of interdisciplinary leadership training on a retrospective cohort (2001-2009) of the University of North Carolina MCH Leadership Education in Neurodevelopmental and Related Disabilities (UNC-CH LEND) program, including LEND graduates who were selected to participate in a focused Interdisciplinary Leadership Development Program (ILDP) in addition to their LEND training. Specifically, the study examined graduates' reports of the relationship between LEND training and their attitudes/beliefs about interdisciplinary practice, as well as their reported use of interdisciplinary skills in their post-fellowship practice settings. Using a post-test design, participants in the LEND and ILDP programs were contacted to complete an on-line survey. Using a Conceptual Model guided by EvaluLEAD, respondents were asked to rate the influence of the UNC-LEND training program on their attitudes/beliefs and skills using a 5-point Likert scale, as well as through open-ended descriptions. The 49 LEND respondents represented a 56% overall response rate from years 2001-2009. ILDP participants reported greater agreement with interdisciplinary attitudes/beliefs and more frequent use of interdisciplinary skills than did the non-participants. Graduates of LEND as well as ILDP reported the influence of training through a range of qualitative responses. Response examples highlight the influence of LEND training to promote outcomes at the individual, organizational and systems level. Findings from this study illustrate that MCHB funded LEND training has a strong influence on the future employment and interdisciplinary practices of graduates for the MCH workforce as well as services for individuals with developmental disabilities, their families and systems of care.
Parish, Susan L
A focus group study was conducted to develop an understanding of the experiences of mothers who are trying to balance employment with caring for an adolescent with developmental disabilities. Mothers reported facing considerable difficulties balancing work and caregiving responsibilities because support services rapidly declined when their child reached adolescence. Service cuts were related to the fact that adolescents are expected to be able to care for themselves, despite the fact that for many adolescents with disabilities, this is not possible. The mothers also reported that the preponderance of the responsibility for arranging care for their children was theirs and was not shouldered by their partners. Policy implications are discussed.
D'Arrigo, Stefano; Gavazzi, Francesco; Alfei, Enrico; Zuffardi, Orsetta; Montomoli, Cristina; Corso, Barbara; Buzzi, Erika; Sciacca, Francesca L; Bulgheroni, Sara; Riva, Daria; Pantaleoni, Chiara
Microarray-based comparative genomic hybridization is a method of molecular analysis that identifies chromosomal anomalies (or copy number variants) that correlate with clinical phenotypes. The aim of the present study was to apply a clinical score previously designated by de Vries to 329 patients with intellectual disability/developmental disorder (intellectual disability/developmental delay) referred to our tertiary center and to see whether the clinical factors are associated with a positive outcome of aCGH analyses. Another goal was to test the association between a positive microarray-based comparative genomic hybridization result and the severity of intellectual disability/developmental delay. Microarray-based comparative genomic hybridization identified structural chromosomal alterations responsible for the intellectual disability/developmental delay phenotype in 16% of our sample. Our study showed that causative copy number variants are frequently found even in cases of mild intellectual disability (30.77%). We want to emphasize the need to conduct microarray-based comparative genomic hybridization on all individuals with intellectual disability/developmental delay, regardless of the severity, because the degree of intellectual disability/developmental delay does not predict the diagnostic yield of microarray-based comparative genomic hybridization. © The Author(s) 2015.
Full Text Available Purpose: The purpose of this study is to assess patients’ disability, activities of daily living and self-efficacy patients undergoing hemodialysis (HD and continuos ambulatory peritoneal dialysis (CAPD, to examine the relationship between them. Material and Methods: This study was carried with 152 patients as sample group. In this study, three instruments were used: Personal Information Form, Brief Disability Questionnaire, Katz\\'s Activity\\'s of Daily Living Index and Lawton and Brody\\'s Instrumental Activities of Daily Living Index and Self-efficacy Assessment Form. Data collected from the study was analyzed using percent, mean, Tukey test, significance test of two means, One-way variant analysis and Kruskal-Wallis test. Results: The study results demonstrate that while there is a correlation between self-care ability and age, education level, marital status and additional health problems, factors such as age, gender, education level, work status, income level, social insurance status and frequency of hemodialysis application determine self-efficacy. Furthermore, a negative correlation was found between patients’ disability and activities of daily living , self-efficacy. It was determined that as the level of disability increases self-efficiacy level decreases. Conclusions: Dialysis application affects patients’ disability, activities of daily living and self-efficacy levels. In view of this study’s results, it is recommended to organize education programs to increase self-efficacy levels of dialysis patients and prepare comprehensive plans including patients’ families. [TAF Prev Med Bull 2011; 10(2.000: 181-186
Salt, Alison; Sargent, Jenefer
To present a structured approach for an outpatient consultation for a child with developmental disability who may have an ocular or visual disorder. Review of relevant literature and description of the approach to ocular and visual assessment which could be used by any paediatrician. A systematic approach to history, observation and examination of a child with a developmental disability will assist in identifying a possible visual problem. A structured referral letter will ensure that the child will receive the most appropriate assessment to clarify the problem and appropriate management in the eye clinic. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.
Miller, Rosalie J.; Shotwell, Mary P.
Translational research is redefined in this paper using a combination of methods in statistics and data science to enhance the understanding of outcomes and practice in occupational therapy. These new methods are applied, using larger data and smaller single-subject data, to a study in hippotherapy for children with developmental disabilities (DD). The Centers for Disease Control and Prevention estimates DD affects nearly 10 million children, aged 2–19, where diagnoses may be comorbid. Hippotherapy is defined here as a treatment strategy in occupational therapy using equine movement to achieve functional outcomes. Semiparametric ratio estimator (SPRE), a single-subject statistical and small data science model, is used to derive a “change point” indicating where the participant adapts to treatment, from which predictions are made. Data analyzed here is from an institutional review board approved pilot study using the Hippotherapy Evaluation and Assessment Tool measure, where outcomes are given separately for each of four measured domains and the total scores of each participant. Analysis with SPRE, using statistical methods to predict a “change point” and data science graphical interpretations of data, shows the translational comparisons between results from larger mean values and the very different results from smaller values for each HEAT domain in terms of relationships and statistical probabilities. PMID:29097962
Bowling, Kevin M; Thompson, Michelle L; Amaral, Michelle D; Finnila, Candice R; Hiatt, Susan M; Engel, Krysta L; Cochran, J Nicholas; Brothers, Kyle B; East, Kelly M; Gray, David E; Kelley, Whitley V; Lamb, Neil E; Lose, Edward J; Rich, Carla A; Simmons, Shirley; Whittle, Jana S; Weaver, Benjamin T; Nesmith, Amy S; Myers, Richard M; Barsh, Gregory S; Bebin, E Martina; Cooper, Gregory M
Developmental disabilities have diverse genetic causes that must be identified to facilitate precise diagnoses. We describe genomic data from 371 affected individuals, 309 of which were sequenced as proband-parent trios. Whole-exome sequences (WES) were generated for 365 individuals (127 affected) and whole-genome sequences (WGS) were generated for 612 individuals (244 affected). Pathogenic or likely pathogenic variants were found in 100 individuals (27%), with variants of uncertain significance in an additional 42 (11.3%). We found that a family history of neurological disease, especially the presence of an affected first-degree relative, reduces the pathogenic/likely pathogenic variant identification rate, reflecting both the disease relevance and ease of interpretation of de novo variants. We also found that improvements to genetic knowledge facilitated interpretation changes in many cases. Through systematic reanalyses, we have thus far reclassified 15 variants, with 11.3% of families who initially were found to harbor a VUS and 4.7% of families with a negative result eventually found to harbor a pathogenic or likely pathogenic variant. To further such progress, the data described here are being shared through ClinVar, GeneMatcher, and dbGaP. Our data strongly support the value of large-scale sequencing, especially WGS within proband-parent trios, as both an effective first-choice diagnostic tool and means to advance clinical and research progress related to pediatric neurological disease.
Weissman-Miller, Deborah; Miller, Rosalie J; Shotwell, Mary P
Translational research is redefined in this paper using a combination of methods in statistics and data science to enhance the understanding of outcomes and practice in occupational therapy. These new methods are applied, using larger data and smaller single-subject data, to a study in hippotherapy for children with developmental disabilities (DD). The Centers for Disease Control and Prevention estimates DD affects nearly 10 million children, aged 2-19, where diagnoses may be comorbid. Hippotherapy is defined here as a treatment strategy in occupational therapy using equine movement to achieve functional outcomes. Semiparametric ratio estimator (SPRE), a single-subject statistical and small data science model, is used to derive a "change point" indicating where the participant adapts to treatment, from which predictions are made. Data analyzed here is from an institutional review board approved pilot study using the Hippotherapy Evaluation and Assessment Tool measure, where outcomes are given separately for each of four measured domains and the total scores of each participant. Analysis with SPRE, using statistical methods to predict a "change point" and data science graphical interpretations of data, shows the translational comparisons between results from larger mean values and the very different results from smaller values for each HEAT domain in terms of relationships and statistical probabilities.
Full Text Available Translational research is redefined in this paper using a combination of methods in statistics and data science to enhance the understanding of outcomes and practice in occupational therapy. These new methods are applied, using larger data and smaller single-subject data, to a study in hippotherapy for children with developmental disabilities (DD. The Centers for Disease Control and Prevention estimates DD affects nearly 10 million children, aged 2–19, where diagnoses may be comorbid. Hippotherapy is defined here as a treatment strategy in occupational therapy using equine movement to achieve functional outcomes. Semiparametric ratio estimator (SPRE, a single-subject statistical and small data science model, is used to derive a “change point” indicating where the participant adapts to treatment, from which predictions are made. Data analyzed here is from an institutional review board approved pilot study using the Hippotherapy Evaluation and Assessment Tool measure, where outcomes are given separately for each of four measured domains and the total scores of each participant. Analysis with SPRE, using statistical methods to predict a “change point” and data science graphical interpretations of data, shows the translational comparisons between results from larger mean values and the very different results from smaller values for each HEAT domain in terms of relationships and statistical probabilities.
Cassandra L. Tellegen
Full Text Available Parenting is central to the health and well-being of children. Children with developmental disabilities have been shown to be at increased risk of developing emotional and behavioral problems. Parent training programs are effective interventions for improving child behavior and family functioning. This paper describes the outcomes of a brief 4-session parenting intervention (Primary Care Stepping Stones Triple P targeting compliance and cooperative play skills in an 8-year-old girl with Asperger’s disorder and ADHD combined type. The intervention was associated with decreases in child behavior problems, increases in parenting confidence, and decreases in dysfunctional parenting styles. This paper demonstrates that low-intensity parenting interventions can lead to significant improvements in child behavior and family functioning. Such brief interventions are cost effective, can be widely disseminated, and have been designed to be delivered within primary health care settings. Pediatricians can play a key role in identifying parents in need of assistance and in helping them access evidence-based parenting interventions.
Levy, Allison; DeLeon, Iser G; Martinez, Catherine K; Fernandez, Nathalie; Gage, Nicholas A; Sigurdsson, Sigurdur Óli; Frank-Crawford, Michelle A
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.
Allen, Anna A; Schlosser, Ralf W; Brock, Kristofer L; Shane, Howard C
When working with individuals with little or no functional speech, clinicians often recommend that communication partners use the client's augmentative and alternative communication (AAC) device when speaking to the client. This is broadly known as "augmented input" and is thought to enhance the client's learning of language form and content. The purpose of this systematic review was to determine the effects of augmented input on communication outcomes in persons with developmental disabilities and persons with childhood apraxia of speech who use aided AAC. Nineteen studies met the inclusion criteria. Each included study was reviewed in terms of participant characteristics, terminology used, symbol format, augmented input characteristics, outcomes measured, effectiveness, and study quality. Results indicate that augmented input can improve single-word vocabulary skills and expression of multi-symbol utterances; however, comprehension beyond the single word level has not been explored. Additionally, it is difficult to form conclusions about the effect of augmented input on specific diagnostic populations. Directions for future research are posited.
Langkamp, Diane L; McManus, Mark D; Blakemore, Susan D
The literature on the use of telemedicine for children with developmental disabilities (DD) is limited and mostly describes telemedicine being used to link patients with distant subspecialty multidisciplinary care. Parents generally have reported satisfaction with such care and have perceived it to be equally effective as in-person care. Here we report on the use of school-based asynchronous telemedicine to connect children with DD with primary care providers. We developed Tele-Health-Kids, a school-based program using asynchronous telemedicine to connect children with DD with their primary care physician for the care of minor illnesses. We surveyed parents at enrollment and after the child's first telemedicine visit to assess satisfaction. We describe 4 cases that illustrate benefits, particularly for children with DD and challenging behaviors, suggesting that asynchronous telemedicine may actually be superior to traditional in-office visits in some circumstances. Most parents expressed a high level of satisfaction with the program. Benefits identified include decreased stress to the child and the parents as well as increasing the likelihood of a successful medical examination due to greater cooperation by the child. Visits using asynchronous or "store and forward" telemedicine technology may be superior in some situations by allowing the visit to be performed at a pace that can be adjusted to the needs of the child with DD. More research in the use of asynchronous telemedicine for children and youth with DD, particularly for children with DD and challenging behaviors, is needed.
Martin A. Volker
Full Text Available The Gilliam Autism Rating Scale-Second Edition (GARS-2 is a widely used screening instrument that assists in the identification and diagnosis of autism. The purpose of this study was to examine the factor structure, internal consistency, and screening sensitivity of the GARS-2 using ratings from special education teaching staff for a sample of 240 individuals with autism or other significant developmental disabilities. Exploratory factor analysis yielded a correlated three-factor solution similar to that found in 2005 by Lecavalier for the original GARS. Though the three factors appeared to be reasonably consistent with the intended constructs of the three GARS-2 subscales, the analysis indicated that more than a third of the GARS-2 items were assigned to the wrong subscale. Internal consistency estimates met or exceeded standards for screening and were generally higher than those in previous studies. Screening sensitivity was .65 and specificity was .81 for the Autism Index using a cut score of 85. Based on these findings, recommendations are made for instrument revision.
Glidden, L M; Billings, F J; Jobe, B M
Parents with children with developmental disabilities (DD) encounter a variety of stressors associated with rearing their children and must develop effective coping mechanisms in order to adapt successfully to these challenges. Previous research has failed to establish the role of parental individual differences in the reported use of different coping strategies. The current study explores parental personality and whether children with DD were adopted or born into the families and their influence on the coping strategies used by mothers and fathers. A total of 97 mother-father dyads rearing at least one child with DD were participants. They narrated stressful situations related to their child and completed the Ways of Coping Questionnaire twice. Data were also collected with regard to personality, depression and subjective well-being (SWB). Both adoptive and birth mothers and fathers used more problem-focused than emotion-focused strategies. Personality factors, Neuroticism especially, were predictive of coping strategy use. Higher levels of Positive Reappraisal were associated with higher levels of SWB, whereas higher levels of Escape-Avoidance were associated with lower levels of SWB, but only for mothers. Results were consistent with a dispositional model of strategy use in that frequency of use was associated with personality characteristics, was consistent over time, and for different children in the same families. Future research should focus on the persistence of the associations between strategy use and well-being and whether they hold true at different stages of the lifespan when coping contexts may change quite dramatically.
Kay-Raining Bird, Elizabeth; Trudeau, Natacha; Sutton, Ann
Children with DD must and do become bilingual, but the research reported in this special issue raises questions about equitable access to bilingual opportunities and provision of appropriate supports to ensure optimal bilingual growth in these children. The purpose of the present article was to apply the findings from our international collaboration to inform policy and practice on bilingualism in children with developmental disabilities (DD). To do this, we first overview the research presented in detail in other articles of this special issue: a narrative literature review, a review of site policies and practices related to special education and language education, a qualitative analysis of key informant interviews, and a quantitative analysis of surveys of practitioners. From these overviews emerge a complex set of contextual factors that impact bilingual development in children with DD. We then use the Bioecological Systems model of Bronfenbrenner and Morris (2007) and conceptual maps (C-maps) to examine the particular circumstances of three hypothetical children with DD who are in very different bilingual contexts. In so doing, areas of both positive and negative influence on lasting bilingualism are identified for each child. We end with recommendations for increasing access to and support for bilingualism in children with DD. Copyright © 2016 Elsevier Inc. All rights reserved.
Okyere, Christiana; Aldersey, Heather Michelle; Lysaght, Rosemary; Sulaiman, Surajo Kamilu
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
Alzrayer, Nouf M; Banda, Devender R; Koul, Rajinder
Many children with autism spectrum disorders (ASD) and/or developmental disabilities are unable to meet their daily communication needs with speech alone. These individuals are considered potential candidates for speech-generating devices (SGDs) and mobile technologies with AAC-specific applications. The purpose of this study was to determine the effectiveness of systematic instruction on teaching multistep requesting skills using an iPad loaded with Proloquo2Go to children with ASD and other developmental disabilities. The participants in this study were four children between the ages of 8 and 10 years diagnosed with ASD and/or other developmental disabilities. The results indicated that for these participants, the intervention was effective in increasing multistep requesting using the iPad. All participants were successful to varying degrees in navigating across pages and combining symbols to request preferred items. Additionally, the participants demonstrated generalization of newly acquired skills by requesting different preferred items and activities during the generalization probes. Results are discussed and implications for research and practice are presented.
Paul David Harpur
Full Text Available People with disabilities often confront barriers in exercising their right to work. Social model scholarship has recognised that attitude is a key factor in the disablement of people with impairments. This study reports on 28 semi-structured interviews with professionals with disabilities. Drawing from their lived experiences and roles in the disability rights movement, the professionals with disabilities interviewed in this study provide unique perspectives on the instances of attitudinal discrimination. The interviewees discuss the tactics they employ to reduce the negative impact of erroneous stereotypes and the successes of such tactics. Many of the tactics employed by interviewees reflect strategies discussed in contact theory scholarship. This study focuses upon contact theory and considers the similarities between this theory and the interventions of interviewees. Through positing interviewees' tactics in the literature this study is able to analyse possible positive and negative consequences of such interventions. Keywords: Contact theory, right to work, professionals with disabilities
Schwartz, Ariel E; Kramer, Jessica M
Peer mentoring may be an effective approach for fostering skill development for mentors and mentees with developmental disabilities. However, little is known about how mentors with developmental disabilities perceive and enact their roles. (1) How do young adults with developmental disabilities describe their role as a peer mentor in the context of instrumental peer mentoring? (2) How do they enact their perceived roles? Thematic analysis of semi-structured reflections completed by six mentors with developmental disabilities (ages 17-35) with multiple mentoring experiences. Mentors perceived themselves as professionals with a primary role of teaching, and for some mentoring relationships, a secondary role of developing an interpersonal relationship. To enact these roles, mentors used a supportive interactional approach characterized by actions such as encouragement and sharing examples and dispositions, such as flexibility and patience. Mentors monitored mentee learning and engagement within the mentoring session and, as needed, adjusted their approach to optimize mentee learning and engagement. To successfully manage their interactional approach, mentors used supports such as peer mentoring scripts, tip sheets, and supervisors. While mentors reported several actions for teaching, they may benefit from training to learn approaches to facilitate more consistent development of interpersonal relationships. Implications for Rehabilitation Peer mentoring may be an effective approach for fostering skill development for young adult mentors and mentees with developmental disabilities. In this study, young adult peer mentors with developmental disabilities perceived themselves as professionals with a primary role of teaching and a secondary role of developing an interpersonal relationship. Peer mentors used actions and dispositions that matched their perceived roles and supported mentees with developmental disabilities to engage in instrumental mentoring. With supports and
Brewer, Jeffrey L; Taber-Doughty, Teresa; Kubik, Sara
We investigated the perceptions of people about the safety, security and privacy of a telecare monitoring system for adults with developmental disabilities living in residential settings. The telecare system was used by remote caregivers overnight, when staff were not present in the homes. We surveyed 127 people from different stakeholder groups in the state of Indiana. The people surveyed included those with knowledge or experience of telecare, and those without. The stakeholders were clients, their advocates, service provider administrators and independent case coordinators. The responses in each category for every group were positive except one: only 4 of the 11 telecare case coordinators agreed that the telecare system provided a secure environment. Overall, the telecare system was perceived to be as safe, secure and private as the conventional alternative of having staff in the home.
Lauren J. Rice
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.
Carter, Erik W; Sisco, Lynn G; Brown, Lissa; Brickham, Dana; Al-Khabbaz, Zainab A
We examined the peer interactions and academic engagement of 23 middle and high school students with developmental disabilities within inclusive academic and elective classrooms. The extent to which students with and without disabilities interacted socially was highly variable and influenced by instructional format, the proximity of general and special educators, and curricular area. Peer interactions occurred more often within small group instructional formats, when students were not receiving direct support from a paraprofessional or special educator, and in elective courses. Academic engagement also varied, with higher levels evidenced during one-to-one or small group instruction and when in proximity of general or special educators. Implications for designing effective support strategies for students with autism and/or intellectual disability within general education classrooms are discussed.
The study examined the effects of teaching presentation skills and post-school options to three high school students with developmental disabilities. While previous research has indicated students with learning disabilities can learn both academic and life skills within the same activity (Collins, Hager, & Galloway, 2011; Falkenstine, Collins,…
Schieve, Laura A.; Gonzalez, Vanessa; Boulet, Sheree L.; Visser, Susanna N.; Rice, Catherine E.; Braun, Kim Van Naarden; Boyle, Coleen A.
Studies document various associated health risks for children with developmental disabilities (DDs). Further study is needed by disability type. Using the 2006-2010 National Health Interview Surveys, we assessed the prevalence of numerous medical conditions (e.g. asthma, frequent diarrhea/colitis, seizures), health care use measures (e.g. seeing a…
Bourke-Taylor, Helen; Pallant, Julie F.; Law, Mary; Howie, Linsey
Aim: Many mothers of children with developmental disabilities are known to experience high levels of stress, and compromised mental health. Research is crucial to better understand and assist mothers with compromised mental health, and ultimately better service families raising and supporting a child with a disability. Method: Data were collected…
Far less is known about the effects of functional communication-based toileting interventions for students with developmental disabilities in a school setting. Furthermore, the currently available toileting interventions for students with disabilities include some undesirable procedures such as the use of punishment, unnatural clinic/university…
Hahn, Joan Earle
To describe the most frequently reported and the most central nursing interventions in an advance practice registered nurse (APRN)-led in-home preventive intervention model for adults aging with developmental disabilities using the Nursing Intervention Classification (NIC) system. A descriptive data analysis and a market basket analysis were conducted on de-identified nominal nursing intervention data from two home visits conducted by nurse practitioners (NPs) from October 2010 to June 2012 for 80 community-dwelling adults with developmental disabilities, ages 29 to 68 years. The mean number of NIC interventions was 4.7 in the first visit and 6.0 in the second visit and last visit. NPs reported 45 different intervention types as classified using a standardized language, with 376 in Visit One and 470 in Visit Two. Approximately 85% of the sample received the Health education intervention. The market basket analysis revealed common pairs, triples, and quadruple sets of interventions in this preventive model. The NIC nursing interventions that occurred together repeatedly were: Health education, Weight management, Nutrition management, Health screening, and Behavior management. Five NIC interventions form the basis of an APRN-led preventive intervention model for individuals aging with lifelong disability, with health education as the most common intervention, combined with interventions to manage weight and nutrition, promote healthy behaviors, and encourage routine health screening. Less frequently reported NIC interventions suggest the need to tailor prevention to individual needs, whether acute or chronic. APRNs employing prevention among adults aging with developmental disabilities must anticipate the need to focus on health education strategies for health promotion and prevention as well as tailor and target a patient-centered approach to support self-management of health to promote healthy aging in place. These NIC interventions serve not only as a guide for
de Valenzuela, Julia Scherba; Bird, Elizabeth Kay-Raining; Parkington, Karisa; Mirenda, Pat; Cain, Kate; MacLeod, Andrea A N; Segers, Eliane
The purpose of this article is to describe the results of a thematic analysis of 79 semi-structured interviews collected at six research sites in four countries in relation to the inclusion and exclusion of students with developmental disabilities (DD) in and from special education and bilingual opportunities. The participants were individuals with expertise either in special needs and/or language education to support bilingualism (e.g., second language (L2) instruction), who served as key informants about service delivery and/or policy in these areas. Six themes emerged as salient during the analysis: we include all kids, special needs drives it, time/scheduling conflicts, IEP/IPP/statement drives it, it's up to the parents, and service availability. The results suggested that access to language programs and services is limited for children with DD, even though participants at all sites reported adherence to a philosophy of inclusion. A priority on special education services over language services was identified, as well as barriers to providing children with DD access to programs and services to support bilingual development. Some of these barriers included time and scheduling conflicts and limited service availability. Additionally, the role of parents in decision making was affirmed, although, in contrast to special education services, decision-making about participation or exemption from language programs was typically left up to the parents. Overall, the results suggest a need for greater attention to providing supports for both first (L1) and L2 language development for bilingual children with DD and greater access to available language programs. Copyright © 2016 Elsevier Inc. All rights reserved.
Flore, Leigh Anne; Milunsky, Jeff M
Global developmental delay (GDD) and intellectual disability (ID) occur in up to 3% of the general population and are even more commonly encountered in the setting of the pediatric neurology clinic. New advances in technology and in the understanding of genetic disorders have led to changes in the diagnostic approach to a child with unexplained GDD or ID. Chromosomal microarray has become a first-line test for evaluation of patients in this population and has both significantly increased diagnostic yield and introduced new challenges in the interpretation of copy number variants of uncertain significance. The G-banded karyotype is now frequently utilized as an adjunct to the microarray rather than as a first-line test in individuals with GDD or ID. Fragile X DNA testing continues to be recommended in the initial evaluation of the child with GDD or ID. The presence or absence of certain cardinal features (such as microcephaly or macrocephaly, seizures, autism, abnormal neurologic examination, and facial dysmorphism) can be utilized to direct single-gene molecular testing. The availability of next-generation and massively parallel sequencing technologies has enabled the use of genetic testing panels, in which dozens of genes associated with GDD or ID may be rapidly analyzed. Most recently, the clinical availability of whole-genome and whole-exome sequencing has opened new possibilities for the evaluation of individuals with GDD or ID who have previously eluded a genetic diagnosis. Consultation with a medical geneticist is recommended when progressing beyond first-tier analyses to most efficiently prioritize testing. Copyright © 2012 Elsevier Inc. All rights reserved.
López-Pisón, J; García-Jiménez, M C; Monge-Galindo, L; Lafuente-Hidalgo, M; Pérez-Delgado, R; García-Oguiza, A; Peña-Segura, J L
Global developmental delay (GDD) and intellectual disability (ID) are common reasons for consultation in paediatric neurology. Results from aetiological evaluations of children with GDD/ID vary greatly, and consequently, there is no universal consensus regarding which studies should be performed. We review our experience with determining aetiological diagnoses for children with GDD/ID who were monitored by the paediatric neurology unit over the 5-year period between 2006 and 2010. During the study period, 995 children with GDD/ID were monitored. An aetiological diagnosis was established for 309 patients (31%), but not in 686 (69%), despite completing numerous tests. A genetic cause was identified in 142 cases (46% of the total aetiologies established), broken down as 118 cases of genetic encephalopathy and 24 of metabolic hereditary diseases. Our data seem to indicate that diagnosis is easier when GDD/ID is associated with cerebral palsy, epilepsy, infantile spasms/West syndrome, or visual deficit, but more difficult in cases of autism spectrum disorders. Genetic studies provide an increasing number of aetiological diagnoses, and they are also becoming the first step in diagnostic studies. Array CGH (microarray-based comparative genomic hybridisation) is the genetic test with the highest diagnostic yield in children with unexplained GDD/ID. The cost-effectiveness of complementary studies seems to be low if there are no clinically suspected entities. However, even in the absence of treatment, aetiological diagnosis is always important in order to provide genetic counselling and possible prenatal diagnosis, resolve family (and doctors') queries, and halt further diagnostic studies. Copyright © 2013 Sociedad Española de Neurología. Published by Elsevier Espana. All rights reserved.
Keith, Jessica M; Bennetto, Loisa; Rogge, Ronald D
Increases in intellectual and developmental disability (IDD) diagnoses coupled with higher rates of inclusion in school and community settings, has created more opportunities for exposure and integration between those with IDD and the mainstream population. Previous research has found that increased contact can lead to more positive attitudes toward those with IDD. The current study further investigated this impact of contact on attitudes by examining the influence of the quality and quantity of contact on both explicit and implicit levels of prejudice, while also considering potential mediation via intergroup anxiety and implicit attitudes. Based on past research and theory, we predicted that contact (especially quality contact) would have a strong relationship with explicit and implicit positive attitudes toward individuals with IDD. In the present study, 550 people completed a survey and short task that measured their level of contact with individuals with IDD across their lifetime, their current attitudes toward these individuals, and other constructs that are thought to influence this relationship. Multiple regression analyses suggested consistent links between higher quality of contact and lower levels of prejudice toward individuals with IDD at both the explicit and implicit levels. After controlling for quality of contact, higher quantity of contact was either not significantly associated with our measures of prejudice or was, importantly, associated with higher levels of prejudice. Additional analyses support intergroup anxiety and implicit positive attitudes as significant mediators in the associations between quality of contact and the various dimensions of explicit prejudice. Thus, it would seem that it is the quality of interpersonal interactions that is most strongly related to positive attitudes toward individuals with IDD, making it crucial to take care when developing inclusion opportunities in community settings. Copyright © 2015 Elsevier Ltd
Full Text Available PURPOSES: The first objective was to propose a new model representing the balance level of adults with intellectual and developmental disabilities (IDD using Principal Components Analysis (PCA; and the second objective was to use the results from the PCA recorded by regression method to construct and validate summative scales of the standardized values of the index, which may be useful to facilitate a balance assessment in adults with IDD. METHODS: A total of 801 individuals with IDD (509 males mean 33.1 ± 8.5 years old, were recruited from Special Olympic Games in Spain 2009 to 2012. The participants performed the following tests: the timed-stand test, the single leg stance test with open and closed eyes, the Functional Reach Test, the Expanded Timed-Get-up-and-Go Test. Data was analyzed using principal components analysis (PCA with Oblimin rotation and Kaiser normalization. We examined the construct validity of our proposed two-factor model underlying balance for adults with IDD. The scores from PCA were recorded by regression method and were standardized. RESULTS: The Component Plot and Rotated Space indicated that a two-factor solution (Dynamic and Static Balance components was optimal. The PCA with direct Oblimin rotation revealed a satisfactory percentage of total variance explained by the two factors: 51.6 and 21.4%, respectively. The median score standardized for component dynamic and static of the balance index for adults with IDD is shown how references values. CONCLUSIONS: Our study may lead to improvements in the understanding and assessment of balance in adults with IDD. First, it confirms that a two-factor model may underlie the balance construct, and second, it provides an index that may be useful for identifying the balance level for adults with IDD.
Bayoumi Ahmed M
Full Text Available Abstract Background Since the advent of combination antiretroviral therapy, in developed countries HIV increasingly is perceived as a long-term illness. Individuals may experience health-related consequences of HIV and its associated treatments, a concept that may be termed disability. To date, a comprehensive framework for understanding the health-related consequences experienced by people living with HIV has not been developed. The purpose of this research was to develop a conceptual framework of disability from the perspective of adults living with HIV. Methods We conducted four focus groups and 15 face-to-face interviews with 38 adults living with HIV. We asked participants to describe their health-related challenges, their physical, social and psychological areas of life affected, and impact on their overall health. We analyzed data using grounded theory techniques. We also conducted two validity check focus groups with seven returning participants. Results Disability was conceptualized by participants as multi-dimensional and episodic characterized by unpredictable periods of wellness and illness. The Episodic Disability Framework consisted of three main components: a dimensions of disability that included symptoms and impairments, difficulties carrying out day-to-day activities, challenges to social inclusion, and uncertainty that may fluctuate on a daily basis and over the course of living with HIV, b contextual factors that included extrinsic factors (social support and stigma and intrinsic factors (living strategies and personal attributes that may exacerbate or alleviate disability, and c triggers that initiate momentous or major episodes of disability such as receiving an HIV diagnosis, starting or changing medications, experiencing a serious illness, and suffering a loss of others. Conclusion The Episodic Disability Framework considers the variable nature of disability, acknowledges uncertainty as a key component, describes
Kerri McBee-Black; Jung Ha-Brookshire
In response to research which argues that people living with a disability (PLWD) face societal barriers including workplace participation, this study explored how the barriers to social participation, specifically workplace participation, faced by PLWD are exacerbated by the lack of appropriate clothing and the role that stigma, self-efficacy, and clothing have in workplace participation. Finding appropriate clothing is a significant barrier to social participation for many PLWD. The social m...
Full Text Available Purpose: People with disability in rural India face multiple barriers accessing healthcare; our hypothesis is that children with intellectual disability suffer the same but little is known about the barriers faced by them. The objectives of the study were to identify the health seeking behaviours of families with children with intellectual disabilities and the barriers they faced accessing healthcare. Methods: This qualitative study involved interviewing caregivers of children with intellectual disability from a pre-existing community development project in the Sahadoli Kadim block of rural Uttar Pradesh. Semi-structured interviews were also conducted with the local practitioners frequented by these caregivers. Results: Barriers identified were grouped under cognitive, structural and financial barriers which were found to be consistent with the Health Care Access Barrier Model (Carrillo, et al., 2011; WHO, 2011. Cognitive barriers included caregivers being unable to identify the complex health needs of their children. Caregivers lacked appropriate knowledge of intellectual disability, with doctors failing to educate them. Structural and financial barriers encompassed poor availability of healthcare providers and contributed to poor access to specialists. Caregivers had no information about government financial aid and healthcare providers did not refer them to these. Conclusion: Children with intellectual disabilities are forced to live with a poor quality of life because of cognitive, structural and financial barriers they face in accessing health care. Results are specific to children with intellectual disability in rural Sahadoli Kadim and could be used to inform policies and strategies to reduce disparities in health care access for these children.
Heyn, Patricia C; Baumgardner, Chad A; McLachlan, Leslie; Bodine, Cathy
The purpose of this pilot study was to investigate the effectiveness of a mixed-reality (MR) exercise environment on engagement and enjoyment levels of individuals with spinal cord injury (SCI) and intellectual and developmental disabilities (IDD). Six people participated in this cross-sectional, observational pilot study involving one MR exercise trial. The augmented reality environment was based on a first-person perspective video of a scenic biking/walking trail in Colorado. Males and females (mean age, 43.3 ± 13.7 years) were recruited from a research database for their participation in previous clinical studies. Of the 6 participants, 2 had SCI, 2 had IDD, and 2 were without disability. The primary outcome measurement of this pilot study was the self-reported engagement and enjoyment level of each participant after the exercise trial. All participants reported increased levels of engagement, enjoyment, and immersion involving the MR exercise environment as well as positive feedback recommending this type of exercise approach to peers with similar disabilities. All the participants reported higher than normal levels of enjoyment and 66.7% reported higher than normal levels of being on a real trail. Participants' feedback suggested that the MR environment could be entertaining, motivating, and engaging for users with disabilities, resulting in a foundation for further development of this technology for use in individuals with cognitive and physical disabilities.
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Wilson, Nathan J; Jaques, Hayden; Johnson, Amanda; Brotherton, Michelle L
People with intellectual disability often have few friends and experience social exclusion. Recognising this gap, supported social groups with the aim of inclusion and interdependence were created by a supported employment provider. Interviews were undertaken with 10 adults with intellectual disability exploring their lived experiences of a supported social group. Data were analysed using descriptive phenomenology. Two themes emerged (i) supported engagement fosters wellbeing, and (ii) developing social belonging and connectedness. Participants not only acknowledged the support that they needed to participate, but also that the social group had changed their lives in many ways. Adults with intellectual disability want to socialise, have friends and be part of their community. For this to be achieved, they recognise the need to seek some form of support. With appropriate and targeted support, adults with intellectual disability can move from social exclusion towards supported inclusion and experience richer lives. © 2016 The Authors Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.
Woolfson, L; Grant, E
Rearing a child with a developmental disability is associated with increased parental stress. Theories of stress and adjustment and bi-directional theories of child development suggest that parenting could influence these negative outcomes. Relationships between parenting approaches and stress in parents of children with developmental disabilities (DD) (N = 53) were examined across two age groups, 3-5 years and 9-11 years and compared with a contrast group of typically developing children (TD) (N = 60). Measures used were the Parenting Stress Index-Short Form and Rickel and Biasatti's modification of Block's Child Rearing Practices Report, classified into Baumrind's parenting styles using Reitman and Gross's method. Parents in the older DD group used Authoritative parenting less than parents in the younger DD group, while the opposite developmental pattern was seen in the TD group. Multivariate analysis of variance showed a significant group x parenting style interaction for Parental Distress, Parent-Child Dysfunctional Interaction and Difficult Child. Stress measures were higher for the DD group and seemed to be associated with Authoritative parenting approaches, an effect that was not observed in the TD group. Findings suggest that the well-established effect of group on stress may be moderated by parenting style. Authoritative parenting may be highly stressful for parents of children with DD to implement, resulting in a decrease in its use across the two age groups.
Ellison, Caroline; White, Amy; Chapman, Libby
Background: Most people with a disability want to remain living in their own home as they age. Without additional support, people with a disability may not be able to avoid moving into residential aged care, attending day programs, or becoming isolated from participation in the wider community. This study examined whether participants perceived…
Full Text Available The number of elderly people living alone in their homes is permanently growing in the whole western world. Because of the deteriorating capabilities to sense and interact with the environment, such as memory, eye sight, hearing and mobility, the ageing populations often live with significantly degraded life quality. Many also suffer from chronic diseases that require medical treatment and periodical examinations. Different Assisted Living Systems have been proposed to cope with the problems. The goal is to enable the elderly people to live longer in their preferred environment, to enhance the quality of their live and to reduce the expenses of the public health care. The Assisted Living Systems are based on a lot of sensors, actuators and multimedia equipment, providing for the autonomy of people and assisting them in carrying out their daily activities together with available interaction with remote relatives and friends. The applied approaches and implementations are specific that limit the dissemination of the results between the object oriented groups. Besides, most of the projects require considerable funding for implementation. For the time being and especially for some countries with lower Gross Domestic Product, the efforts may be directed to creation of low-cost assistive systems performing some basic tasks, related to the need and health status of the living alone adults or disabled people, e.g. automatic fall detection and signalization, as well as instantaneous monitoring the photo-pletismographic signals together with permanently available communication interface between the caregiver and the user.
Herrman, Helen; Evert, Helen; Harvey, Carol; Gureje, Oye; Pinzone, Tony; Gordon, Ian
The prevalence of psychosis and needs for care among homeless people were studied in inner Melbourne. This was a two-stage nested study within the Australian National Survey of People Living with Psychotic Illness. A screen for psychosis was administered to a representative sample of men and women living in marginal housing in a mental health service catchment area. A selected subsample of 82 screen-positive respondents was interviewed using the Diagnostic Interview for Psychosis (DIP), a semistructured, standardized interview with three modules: (i) demography, functioning and quality of life; (ii) diagnosis; and (iii) service use. An unexpectedly high prevalence of people living with psychotic disorders (estimated lifetime prevalence 42%, 95% CI=37-47%) may reflect a concentration of vulnerable people in the shrinking marginal housing supply in the inner city areas. Disability in everyday, occupational and social functioning is greater for this subgroup than for other people living with psychosis in Australia. Most people were single and unemployed, and many reported social isolation and feeling unsafe. Substance use disorders were common. Most people were using health services, including specialist mental health services, but few were receiving rehabilitation, vocational or housing support. Despite high levels of contact with a well-organized, sectorized mental health service in an affluent country, this pocket of several hundred people had high levels of persisting disability and needs. The literature and local experience suggest that changing this situation is likely to require co-ordinated policy and practice between the health, welfare and housing sectors.
Christensen, Deborah L; Bilder, Deborah A; Zahorodny, Walter; Pettygrove, Sydney; Durkin, Maureen S; Fitzgerald, Robert T; Rice, Catherine; Kurzius-Spencer, Margaret; Baio, Jon; Yeargin-Allsopp, Marshalyn
Early identification of children with autism spectrum disorder (ASD) facilitates timely access to intervention services. Yet, few population-based data exist on ASD identification among preschool-aged children. The authors aimed to describe ASD prevalence and characteristics among 4-year-old children in 5 of 11 sites participating in the 2010 Autism and Developmental Disabilities Monitoring Network. Children with ASD were identified through screening of health and education records for ASD indicators, data abstraction and compilation for each child, and clinician review of records. ASD prevalence estimates, ages at first evaluation and ASD diagnosis, cognitive test scores, and demographics were compared for 4-year-old children and 8-year-old children living in the same areas. Among 58,467 children in these 5 sites, 4-year-old ASD prevalence was 13.4 per 1000, which was 30% lower than 8-year-old ASD prevalence. Prevalence of ASD without cognitive impairment was 40% lower among 4-year-olds compared with 8-year-olds, but prevalence of ASD with cognitive impairment was 20% higher among 4-year-olds compared with 8-year-olds. Among 4-year-olds with ASD, female and non-Hispanic white children were more likely to receive their first comprehensive evaluation by age 36 months compared with male and non-Hispanic black children, respectively. Among children diagnosed with ASD by age 48 months, median age at first comprehensive evaluation was 27 months for 4-year-olds compared with 32 months for 8-year-olds. Population-based ASD surveillance among 4-year-old children provides valuable information about the early identification of children with ASD and suggests progression toward lowering the age of first ASD evaluation within participating Autism and Developmental Disabilities Monitoring communities.
Fisher, Kathleen M; Peterson, Justin D; Albert, Jon D
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.
Smith, Ashlyn L; Romski, Maryann; Sevcik, Rose A
This study examined communication interaction patterns when one sibling had a developmental disability as well as the role of communication skills in sibling relationship quality. Thirty sibling dyads were categorized into one of three communication status groups: emerging, context-dependent, and independent communicators. Independent communicators and their siblings did not differ in terms of syntactic complexity but typically developing siblings dominated the interaction and exhibited greater lexical diversity regardless of communication status. Communication status did not impact the warmth/closeness, rivalry, or conflict in the sibling relationship, but siblings of independent communicators engaged in the greatest amount of helping and managing behaviors. These results represent a first step in understanding the role of communication skills in the sibling relationship for families of children with disabilities.
Full Text Available In response to research which argues that people living with a disability (PLWD face societal barriers including workplace participation, this study explored how the barriers to social participation, specifically workplace participation, faced by PLWD are exacerbated by the lack of appropriate clothing and the role that stigma, self-efficacy, and clothing have in workplace participation. Finding appropriate clothing is a significant barrier to social participation for many PLWD. The social model of disability used in this study supports this by suggesting that it is society which places barriers to PLWD rather than their disability. A qualitative inquiry of semi-structured, in-depth interviews was used, and the results showcase six sub-themes of barriers: work defines me, disability as the barrier to workplace participation, work allows extra societal opportunities, stigma questions my self-efficacy, workplace accommodations diminish my stigma, and clothing builds my self-efficacy. The study found that, for PLWD, workplace participation is hindered because of occupational typecasting and lack of appropriate clothing, which increases their stigma and decreases their self-efficacy. The contributions of this study include theory support, policy, community, and educational enhancement.
Nord, Derek; Luecking, Richard; Mank, David; Kiernan, William; Wray, Christina
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.
Miguel Ángel VERDUGO ALONSO
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.
Ballan, Michelle S; Freyer, Molly Burke
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.
Houwen, Suzanne; Visser, Linda; van der Putten, Annette; Vlaskamp, Carla
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.
Squier, Susan M
This essay draws on two emerging fields--the study of comics or graphic fiction, and disability studies--to demonstrate how graphic fictions articulate the embodied, ethical, and sociopolitical experiences of impairment and disability. Examining David B's Epileptic and Paul Karasik and Judy Karasik's The Ride Together, I argue that these graphic novels unsettle conventional notions of normalcy and disability. In so doing, they also challenge our assumed dimensions and possibilities of the comics genre and medium, demonstrating the great potential comics hold for disability studies.
Vohra, Rini; Madhavan, Suresh; Sambamoorthi, Usha; St Peter, Claire
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.
Child Adjustment and Parent Efficacy Scale-Developmental Disability (CAPES-DD): First psychometric evaluation of a new child and parenting assessment tool for children with a developmental disability.
Emser, Theresa S; Mazzucchelli, Trevor G; Christiansen, Hanna; Sanders, Matthew R
This study examined the psychometric properties of the Child Adjustment and Parent Efficacy Scale-Developmental Disability (CAPES-DD), a brief inventory for assessing emotional and behavioral problems of children with developmental disabilities aged 2- to 16-years, as well as caregivers' self-efficacy in managing these problems. A sample of 636 parents participated in the study. Children's ages ranged from 2 to 15. Exploratory and confirmatory factor analyses supported a 21-item, three-factor model of CAPES-DD child adjustment with 13 items describing behavioral (10 items) and emotional (3 items) problems and 8 items describing prosocial behavior. Three additional items were included due to their clinical usefulness and contributed to a Total Problem Score. Factor analyses also supported a 16-item, one factor model of CAPES-DD self-efficacy. Psychometric evaluation of the CAPES-DD revealed scales had satisfactory to very good internal consistency, as well as very good convergent and predictive validity. The instrument is to be in the public domain and free for practitioners and researchers to use. Potential uses of the measure and implications for future validation studies are discussed. Copyright © 2015 Elsevier Ltd. All rights reserved.
Vu, Dinh-Son; Allard, Ulysse Cote; Gosselin, Clement; Routhier, Francois; Gosselin, Benoit; Campeau-Lecours, Alexandre
Robotic assistive devices enhance the autonomy of individuals living with physical disabilities in their day-to-day life. Although the first priority for such devices is safety, they must also be intuitive and efficient from an engineering point of view in order to be adopted by a broad range of users. This is especially true for assistive robotic arms, as they are used for the complex control tasks of daily living. One challenge in the control of such assistive robots is the management of the end-effector orientation which is not always intuitive for the human operator, especially for neophytes. This paper presents a novel orientation control algorithm designed for robotic arms in the context of human-robot interaction. This work aims at making the control of the robot's orientation easier and more intuitive for the user, in particular, individuals living with upper limb disabilities. The performance and intuitiveness of the proposed orientation control algorithm is assessed through two experiments with 25 able-bodied subjects and shown to significantly improve on both aspects.
Nikolova, Silviya P; Small, Eusebius; Campillo, Claudia
In low and high income countries alike, disability exacerbates social, economic, and health disparities, in spite of their differences. This study seeks to identify factors that predict the circumstances people with disabilities face, including poverty. A cross-sectional study design was employed using census track level data for the cities of Monterrey, Nuevo Leon, and Dallas, Texas, from Mexico 2010 and USA 2000 census data collections. Two methods, spatial autocorrelation and geographically weighted regression were used to identify spatial patterns of disability and to explore the relation between disability and context-specific socio-demographic factors. Results indicated that people with disabilities living below the poverty line experience high segregation levels in the semi-central zones of Dallas. In Monterrey, people with disabilities clustered in central areas of the city. A Geographically Weighted Regression (GWR) from both data analyses reported high goodness of fit (R ≥ 0.8 for Dallas data and R ≥ 0.7 for Monterrey data, respectively) and predictability of disability prevalence when social disadvantage factors such as unemployment, housing insecurity, household living conditions, and lack of education were present. The divergent and sometimes conflicting trends in practices and policies addressing disability in low and high income environments renders a reexamination of the framework of disability. An understanding of local characteristics joins a grounded socio-cultural understanding of the various contexts that shape location-based social networks and political decisions in providing such an analysis. Copyright © 2015 Elsevier Inc. All rights reserved.
Slattery, Éadaoin; McMahon, Jennifer; Gallagher, Stephen
Researchers have consistently documented the relationship between optimism and benefit finding; however, there is a dearth of research on the psychological mechanisms mediating their association. This cross-sectional study sought to elucidate the mediating role of positive reappraisal and social support in the optimism-benefit finding relationship in parents caring for children with developmental disabilities by testing a parallel multiple mediation model. One hundred and forty-six parents caring for children with developmental disabilities completed an online survey assessing optimism, positive reappraisal, social support and benefit finding. Optimism was not directly related to benefit finding but rather influenced it indirectly through positive reappraisal and social support. Specifically, higher levels of optimism predicted greater positive reappraisal and social support, which in turn led to greater benefit finding in parents. These results underscore the importance of targeting parents' perceptions of benefits through both positive reappraisal and social support in order to help them cope with the demands of the caregiving context. Copyright © 2017 Elsevier Ltd. All rights reserved.
Novo-Filho, Gil M; Montenegro, Marília M; Zanardo, Évelin A; Dutra, Roberta L; Dias, Alexandre T; Piazzon, Flavia B; Costa, Taís V M M; Nascimento, Amom M; Honjo, Rachel S; Kim, Chong A; Kulikowski, Leslie D
The most prevalent structural variations in the human genome are copy number variations (CNVs), which appear predominantly in the subtelomeric regions. Variable sizes of 4p/4q CNVs have been associated with several different psychiatric findings and developmental disability (DD). We analyzed 105 patients with congenital anomalies (CA) and developmental and/or intellectual disabilities (DD/ID) using MLPA subtelomeric specific kits (P036 /P070) and 4 of them using microarrays. We found abnormal subtelomeric CNVs in 15 patients (14.3%), including 8 patients with subtelomeric deletions at 4p/4q (53.3%). Additional genomic changes were observed at 1p36, 2q37.3, 5p15.3, 5q35.3, 8p23.3, 13q11, 14q32.3, 15q11.2, and Xq28/Yq12. This indicates the prevalence of independent deletions at 4p/4q, involving PIGG, TRIML2, and FRG1. Furthermore, we identified 15 genes with changes in copy number that contribute to neurological development and/or function, among them CRMP1, SORCS2, SLC25A4, and HELT. Our results highlight the association of genes with changes in copy number at 4p and 4q subtelomeric regions and the DD phenotype. Cytogenomic characterization of additional cases with distal deletions should help clarifying the role of subtelomeric CNVs in neurological diseases. © 2016 S. Karger AG, Basel.
Osada, Hirokazu; Coelho de Amorim, Annibal; Velosa, Andrea; Wan, Wong Poh; Lotrakul, Panpimol; Hara, Hitoshi
Compared with US or European countries, there are fewer mental health services for mothers of children with developmental disabilities in Latin American and/or Southeast Asian countries. To explore the risk of depression in mothers of children with developmental disabilities in countries with a lack of mental health professionals, we conducted cross-cultural comparisons for four countries: Brazil, Colombia, Malaysia and Thailand. Using the CES-D, we compared the participants' depressive symptoms, by which we also estimated the probability of morbid depression. In every country, participants tended to show depressive symptoms. In the CES-D total scores and the numbers of mothers who were observed to have a high level of depressive symptoms, there were significant differences among countries (F = 4.36, p = .006; χ2 = 10.3, p = .015). Considering cultural models, we could apply evidence-based intervention to depressive mothers of children, and conduct intervention and treatment for those mothers and evaluate ways of providing better mental health services to these individuals.
BARKER, R. MICHAEL; AKABA, SANAE; BRADY, NANCY C.; THIEMANN-BOURQUE, KATHY
Little is known about how AAC use in preschool may impact language development for children with complex communication needs (e.g., children with autism, cerebral palsy, Down syndrome, and other developmental disabilities). We developed two surveys (a) to describe children’s use of AAC in preschool classrooms, as well as the use of prompts and question asking, and augmented input by their communication partners; and (b) to describe teachers’ experience, training, and perceived support in providing AAC. We then examined the relationship between children’s experience of AAC, including the use of prompts, question asking, and augmented input by their partners, and the growth of receptive and expressive language for 71 children with developmental disabilities over a two-year period. The use of AAC by peers to provide augmented input was associated with stronger language growth; the use of prompting and question asking by teachers was associated with weaker language growth. Teachers reported that they received little training regarding ways to support a child’s use of AAC. Results suggest the need for further research on promoting AAC use at the preschool level, including research to promote peer interactions for AAC users. PMID:24229337
Sobol, Sheila; Kreps, Alice Roelofs
One of twenty course guides in the Community Living Skills Guide for the College for Living series, this document provides guidelines and workbook activities for the course, Art. The series of courses for developmentally disabled adults is intended to supplement residential programs and to aid in orienting institutionalized persons to eventual…
Munir, Kerim M
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.
Full Text Available The legal treatment of disability affairs carries in itself an inherent contradiction due to the nature of modern society and free-market economy. On the one hand both the historically developed notions of essentialism and on the other the particular-functional definition of manhood drawing its roots from the established democratic order and market economics are present simultaneously. However, within the current order of things there is an unbridgeable divide between them. Nevertheless, with the progression of time there is a slow gradual shift discernible away from the functional definition with the parallel strengthening of the essentialist approach. This shift is further exaggerated by the more widespread acceptance of the rights of self-determination and the provision of opportunities for the disabled, the emergence of social self-determination in case of a population subgroup living under special conditions. For the proper interpretation of the currents in the evolution of legal treatment of disabled people it would be indispensable to institute a proper social-discourse analysis, which, however, exceeds in scope its narrowly defined task.
Liang, Yajun; Welmer, Anna-Karin; Möller, Jette; Qiu, Chengxuan
Data on trends for disability in instrumental activity of daily living (IADL) are sparse in older Chinese adults. To assess trends in prevalence and incidence of IADL disability among older Chinese adults and to explore contributing factors. Population based study. 15 provinces and municipalities in China. Participants (age ≥60) were from four waves of the China Health and Nutrition Survey, conducted in 1997 (n=1533), 2000 (n=1581), 2004 (n=2028) and 2006 (n=2256), and from two cohorts constructed within the national survey: cohort 1997-2004 (n=712) and cohort 2000-2006 (n=823). IADL disability was defined as inability to perform one or more of the following: shopping, cooking, using transportation, financing and telephoning. Data were analysed with logistic regression and generalised estimating equation models. The prevalence of IADL disability significantly decreased from 1997 to 2006 in the total sample and in all of the subgroups by age, sex, living region and IADL items (all p trend 0.10). The recovery rate from IADL disability significantly increased over time in those aged 60-69 years (p=0.03). Living in a rural area or access to local clinics for healthcare was less disabling over time (p trend <0.02). The prevalence of IADL disability decreased among older Chinese adults during 1997-2006, whereas the incidence remained stable. The declining prevalence of IADL disability might be partly due to the decreased duration of IADL disability, and to improvements in living conditions and healthcare facilities over time. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.
Tice, Carolyn J; Hall, Diane M Harnek
People with disabilities are sexual beings who, like all of us, benefit from sexuality education that examines relationship skills and knowledge, attitudes, behaviors, and values that promote healthy sexuality within those relationships. This article provides an overview of landmark policies relevant to persons with disabilities, defines the strengths perspective in the context of curriculum development, and describes a survey built on this perspective that evaluates sexuality education curricula on the strengths rather than the deficits of people.
Lin, Sue C; Gold, Robert S
Assistive technology (AT) enhances the ability of individuals with disabilities to be fully engaged in activities at home, at school, and within their communities-especially for children with developmental disabilities (DD) with physical, sensory, learning, and/or communication impairments. The prevalence of children with DD in the United States has risen from 12.84% in 1997 to 15.04% in 2008. Thus, it is important to monitor the status of their AT needs, functional difficulties, services utilization, and coordination. Using data from the 2009-2010 National Survey on Children with Special Health Care Needs (NS-CSHCN), we conducted bivariate and multivariate statistical analysis, which found that 90% or more of parents of both children with DD and other CSHCN reported that their child's AT needs were met for vision, hearing, mobility, communication, and durable medical equipment; furthermore, children with DD had lower odds of AT needs met for vision and hearing and increased odds for meeting AT needs in mobility and communication. Our findings outline the current AT needs of children with DD nationally. Fulfilling these needs has the potential to engender positive lifelong effects on the child's disabilities, sense of independence, self-confidence, and productivity.
Full Text Available This paper examines the narration of developmental disability through interviews between participants, researchers, and members of community organizations serving the disabled population, in the context of university-community collaborations. These kinds of collaborations are extremely important for researching vulnerable or hard-to-reach populations, which often face lower levels of physical, mental, and social well-being as a consequence of shame, stigma, or discrimination. Community collaboration can thus be invaluable for reaching members of marginalized populations, who may be difficult to locate or otherwise avoid contact with outsiders, because it provides members of a research team with local knowledge of a population, a means of accessing possible participants, and legitimation for the project. I suggest, however, that although the researcher's externality may initially invite skepticism toward the investigation from participants, it can also benefit them by providing a forum for catharsis. Based on a pilot study I conducted with a community advocacy organization for the disabled, I note that some participants expressed an appreciation for being able to discuss certain emotions and experiences during interviews with an outsider who was not involved as a caseworker. I conclude that the presence of a trusted community advocate and a researcher at an interview affects a participant's narrative by providing a safe space for participants to voice their stories to outsiders.
Piat, Myra; Sabetti, Judith; Padgett, Deborah
The overall aim of this study was to explore the experiences of people with psychiatric disabilities living as tenants in independent, supported apartments for the first time. Supported housing provides an alternative to structured, custodial housing models, such as foster homes, or board-and-care homes, for clients in public mental health systems. This article reports findings on how leadership emerged among tenants after making the transition from custodial to supported housing. Semi-structured interviews were conducted with tenants (n = 24) and included questions on their housing history, current living situation, relationships with staff, participation, and understanding or experience of leadership. Interviews were transcribed verbatim, codes generated, and a thematic analysis conducted using a constructivist approach. The findings revealed an understanding and appreciation of leadership among tenants, who identified six pathways to leadership in their housing as a response to unmet tenant needs. Most tenant leaders emerged outside of formal authority or power structures. Supported housing provides a unique social setting and empowering community where the potential of persons with psychiatric disabilities to assume leadership may be realized and further developed. Mental health professionals working in community housing networks are well placed to harness these face-to-face tenant communities, and their natural leaders, as an additional tool in promoting tenant recovery, mutual help, neighbourhood integration, and the broader exercise of citizenship. © 2017 Australian College of Mental Health Nurses Inc.
Fall, C L; Turgeon, P; Campeau-Lecours, A; Maheu, V; Boukadoum, M; Roy, S; Massicotte, D; Gosselin, C; Gosselin, B
Assistive Technologies (ATs) also called extrinsic enablers are useful tools for people living with various disabilities. The key points when designing such useful devices not only concern their intended goal, but also the most suitable human-machine interface (HMI) that should be provided to users. This paper describes the design of a highly intuitive wireless controller for people living with upper body disabilities with a residual or complete control of their neck and their shoulders. Tested with JACO, a six-degree-of-freedom (6-DOF) assistive robotic arm with 3 flexible fingers on its end-effector, the system described in this article is made of low-cost commercial off-the-shelf components and allows a full emulation of JACO's standard controller, a 3 axis joystick with 7 user buttons. To do so, three nine-degree-of-freedom (9-DOF) inertial measurement units (IMUs) are connected to a microcontroller and help measuring the user's head and shoulders position, using a complementary filter approach. The results are then transmitted to a base-station via a 2.4-GHz low-power wireless transceiver and interpreted by the control algorithm running on a PC host. A dedicated software interface allows the user to quickly calibrate the controller, and translates the information into suitable commands for JACO. The proposed controller is thoroughly described, from the electronic design to implemented algorithms and user interfaces. Its performance and future improvements are discussed as well.
Dispenza, Franco; Harper, Lauren S; Harrigan, Megan A
There exist significant health disparities among both lesbian, gay, bisexual, transexual (LGBT) and disability persons; however, there is a dearth of information regarding the subjective health experiences of LGBT persons living with disabilities (LGBTPWD). As such, the purpose of this study was to understand how LGBTPWD subjectively defined and characterized the meaning of health in their lives. Using qualitative content analyses procedures outlined by Elo and Kyngäs (2008), we conducted a secondary data analysis using a larger questionnaire study that was administered via the Internet. Participants were originally asked to answer the following prompt, "Describe what it personally means to you to be healthy?" Open-ended responses from 79 participants were thematically analyzed over several inductive and comparative coding iterations by a 3-person research team. Trustworthiness of data analysis was ensured via researcher triangulation, negative case analyses, and researcher reflexivity. Four dimensions of subjective health emerged during the qualitative analytic process: physical wellness, emotional vitality, functionality, and social engagement. There are contextually nuanced characteristics that constitute subjective health for LGBTPWD. These findings could help rehabilitation professionals provide culturally competent interventions. Implications for future research and limitations are provided in the discussion section. (PsycINFO Database Record (c) 2016 APA, all rights reserved).
Stoffelen, J.; Kok, G.; Hospers, H.; Curfs, L. M. G.
Background: Empirical research on homosexuality among people with an intellectual disability (ID) is limited and, to date, very little is known regarding the personal experiences of gay and lesbian people with an ID. This study set out to answer the question: "What are the lived experiences of a specific cohort of homosexual people with an…
Haigh, Anna; Lee, Darren; Shaw, Carl; Hawthorne, Michelle; Chamberlain, Stephen; Newman, David W; Clarke, Zara; Beail, Nigel
We looked at the research that other people have done about what makes people with a learning disability happy and satisfied with their lives. Researchers call being happy and satisfied with your life 'subjective well-being'. They found out that having things like money and good health does not always mean people are happy. They also found that some people are really happy, even if there are things in their lives they would like to change. None of the people who have done research about 'subjective well-being' have interviewed people with a learning disability about what makes them happy with their lives. We have carried out a study about what makes people with a learning disability happy and satisfied with their lives. This report talks about the research that we did, and what we found out. We interviewed 20 people with a learning disability who said they were very happy and satisfied. We asked them about what things helped them feel like this. The people we spoke to said things like relationships, choice and independence, activities and valuable social roles made them feel satisfied with their lives. They told us about the things that enable them to lead happy lives, and the things that disable them. We also found out about the importance of personal characteristics. These are things like looking on the bright side of life or having ways to manage difficult emotions like sadness or anger. We found out that it is important for people with a learning disability to have good things in their lives, but it is also important to be enabled to access these good things. © 2012 Blackwell Publishing Ltd.
Cagran, B; Schmidt, M; Brown, I
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.
Fox, Michael H; White, Glen W; Rooney, Catherine; Cahill, Anthony
To determine the impact of Hurricane Katrina on the psychosocial health of people with disabilities and on the ability of people with disabilities in the affected area to live independently. Transcribed conversations were analyzed for 56 survivors of Hurricane Katrina on the American Gulf Coast, all of whom were persons with disabilities or persons working with them. Semi-structured interviews were conducted either individually or in focus groups with participants. Qualitative analysis was undertaken using hermeneutic techniques. Six major themes emerged: faith, incredulousness, blaming others or oneself, family adaptation and resiliency, and work and professional responsibility. The resiliency of persons with disabilities to adapt to disasters can be better understood through factors such as these, providing an effective barometer of social capital that can help societies prepare for future disasters among those most vulnerable.
Rhodes, Penny J; Small, Neil A; Ismail, Hanif; Wright, John P
This paper reports on a study of Pakistani people with epilepsy. It explores their attitudes towards their condition, others' attitudes, its impact on their lives, and the extent to which they considered themselves as disabled. Epilepsy was variously interpreted within biomedical, folk and religious paradigms. In line with popular understandings, participants associated disability with stable, permanent and visible physical impairments and did not consider themselves as disabled. However, they also recognised a social dimension to their experience. Much of the distress and disadvantage they experienced was socially determined, both through direct prejudice and discrimination, and indirectly through a fear of others' negative reactions. However, the invisible and unpredictable nature of epilepsy meant that they could conceal their condition and thereby mitigate its social effects. 'Disability' was not experienced as a static and permanent state but as a potential identity that was both contingent and contested. The literature portrays people moving from biomedical to social interpretations of disability. However, the tensions experienced by people in the study were more between competing religious interpretations of their condition and, to some extent, between religious and medical approaches. Conceptions of disability, which are presented in the literature as antagonistic and mutually exclusive, were experienced as different dimensions reflecting the complexity of experience. The paper concludes by suggesting that for many people, for whom disability is an ambiguous, contingent and contested identity, public self-identification as disabled is an unrealistic goal. Rather than conceiving of disability as primarily physical or primarily social, it would be better construed as a complex interweaving of multiple factors--physical, environmental, socio-cultural and psychological factors.
Nickovich, Marti; Kreps, Alice Roelofs
These activities are intended to supplement materials for three courses available in the Community Living Skills Guide for the College for Living series: Cooking/Food Preparation (CE 024 475), Homemaking and Family Living (CE 024 477), and Nutrition (CE 024 484). These courses for developmentally disabled adults are intended to supplement…
Ayoob, Keith-Thomas; And Others
Thirteen children (ages 3.1 to 5.2 years) referred for developmental delay and excessive eating (without obesity) were evaluated. Commonalities included being in foster care, prenatal drug exposure, and abnormally withdrawn and/or aggressive behavior. (Author/DB)
Oeseburg, B.; Groothoff, J. W.; Dijkstra, G. J.; Reijneveld, S. A.; Jansen, D. E. M. C.
Evidence on the association between somatic chronic diseases in ID-adolescents and the full range of pervasive developmental disorder behavior (PDD behavior) is scarce. The aim of the present study is to assess the association between somatic chronic diseases in ID-adolescents and mild PDD behavior. We obtained data on 1044 ID-adolescents, aged…
Lundqvist, Lars-Olov; Andersson, Gunilla; Viding, Jane
Vibroacoustic music has been proposed to be an effective treatment for individuals with developmental disorders and challenging behaviors. The present study experimentally tested the effects of vibroacoustic music on self-injurious, stereotypical, and aggressive destructive behaviors in 20 individuals with autism spectrum disorders and…
Oeseburg, B.; Groothoff, J. W.; Dijkstra, G. J.; Reijneveld, S. A.; Jansen, D. E. M. C.
Evidence on the association between somatic chronic diseases in ID-adolescents and the full range of pervasive developmental disorder behavior (PDD behavior) is scarce. The aim of the present study is to assess the association between somatic chronic diseases in ID-adolescents and mild PDD behavior.
Zaal-Schuller, I. H.; de Vos, M. A.; Ewals, F. V. P. M.; van Goudoever, J. B.; Willems, D. L.
The objectives of this integrative review were to understand how parents of children with severe developmental disorders experience their involvement in end-of-life decision-making, how they prefer to be involved and what factors influence their decisions. We searched MEDLINE, EMBASE, CINAHL and
Racino, Julie Ann
This report describes a 1988 site visit to Pride Industries, a private, nonprofit agency which operates an apartment program for individuals with developmental disabilities in Bismarck, North Dakota, through a contract with a regional office of North Dakota's Department of Developmental Disabilities. Pride Industries supports 34 people living in…
Kearney, Kelly B; Brady, Michael P; Hall, Kalynn; Honsberger, Toby
Many adolescents with developmental disabilities do not learn the safety skills needed to maintain physical well-being in domestic and community environments. Literacy-based behavioral interventions (LBBIs) that combine print, pictures, and behavioral rehearsal are effective for promoting acquisition and maintenance of self-care skills, but have not been investigated as safety skill intervention. Also, LBBIs have primarily been implemented by teachers and other professionals. In this study, a peer partner was taught to deliver an LBBI story to students so they would learn to perform a basic first aid routine: cleaning and dressing a wound. Results showed that students' accuracy with the first aid routine increased after a peer delivered the LBBI instructional package, and maintained after the peer stopped delivering it. This study demonstrates the effectiveness of the LBBI instructional package for teaching first aid safety skills, and extends previous research showing the efficacy of peers in delivering this intervention.
Full Text Available Background: The objective of the qualitative study was to describe the perspectives of high school educators regarding how adolescents with developmental disabilities are taught about sexuality and dating. In addition, the investigators sought to examine how occupational therapy practitioners could be better integrated into the educational team to address this need. Method: Data was collected through semi-structured interviews and analyzed using the constant comparative method. Results: Three major themes emerged: (a sexuality is unique to each student, (b teachers and parents do not know what to do, and (c a potential role for OT. Conclusions: Occupational therapy practitioners may be well suited to address the needs identified through this study given their unique expertise.
O'Neill, Linda P; Murray, Lindsay E
Adult siblings of individuals with developmental disabilities often experience higher levels of anxiety than individuals in the general population. The present study tested whether perceived parenting could mediate the relationship between attachment styles and anxiety in the sibling group compared to a control group. Little association was found between perceived parenting and attachment styles or anxiety for the siblings but there were robust and expected findings for the control. Adult attachment-related-anxiety was a significant unique predictor of anxiety in the sibling group but there was no mediational role for perceived parenting. Conversely, the majority of parenting styles significantly mediated the relationship between attachment and anxiety in the control. Implications for the atypical findings in the sibling group are discussed.
Inagaki, Masumi; Horiguchi, Toshihiro; Kaga, Makiko
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.
Robinson, Suzanne; Hastings, Richard P; Weiss, Jonathan A; Pagavathsing, Jaffni; Lunsky, Yona
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.
Webster, Amanda A.; Carter, Mark
Background: One of the most commonly cited rationales for inclusive education is to enable the development of quality relationships with typically developing peers. Relatively few researchers have examined the features of the range of relationships that children with developmental disability form in inclusive school settings. Method: Interviews…
Leung, Cynthia; Fan, Angel; Sanders, Matthew R.
The study examined the effectiveness of Group Triple P, a Level 4 variant of the Triple P multilevel system of parenting support, with Chinese parents who had a preschool aged child with a developmental disability, using randomized controlled trial design. Participants (Intervention group: 42; Waitlist Control group: 39) completed measures on…
Madsen, Emily K.; Peck, Janelle A.; Valdovinos, Maria G.
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…
Vohra, Rini; Madhavan, Suresh; Sambamoorthi, Usha; St Peter, Claire
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…
Mason, Rose A.; Schnitz, Alana G.; Wills, Howard P.; Rosenbloom, Raia; Kamps, Debra M.; Bast, Darcey
Ensuring educational progress for students with moderate-to-severe developmental disabilities requires exposure to well executed evidence-based practices. This necessitates that the special education workforce, including paraprofessionals, be well-trained. Yet evidence regarding effective training mechanisms for paraprofessionals is limited. A…
Fischer, Leonard S.; Becker, Andrew; Paraguya, Maria; Chukwu, Cecilia
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…
Lunsky, Yona; Hastings, Richard P.; Weiss, Jonathan A.; Palucka, Anna M.; Hutton, Sue; White, Karen
This study evaluated two community based interventions for parents of adults with autism spectrum disorder and other developmental disabilities. Parents in the mindfulness group reported significant reductions in psychological distress, while parents in the support and information group did not. Reduced levels of distress in the mindfulness group…
Brucker, Debra L.; Nord, Derek
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…
Enabling People with Developmental Disabilities to Actively Perform Designated Occupational Activities according to Simple Instructions with a Nintendo Wii Remote Controller by Controlling Environmental Stimulation
Shih, Ching-Hsiang; Wang, Shu-Hui; Chang, Man-Ling; Shih, Ching-Hsiang
The latest researches have adopted software technology, turning the Nintendo Wii Remote Controller into a high performance three-dimensional object orientation detector. This study extended Wii Remote Controller functionality to assess whether two people with developmental disabilities would be able to actively perform designated simple…
A Three-Dimensional Object Orientation Detector Assisting People with Developmental Disabilities to Control Their Environmental Stimulation through Simple Occupational Activities with a Nintendo Wii Remote Controller
Shih, Ching-Hsiang; Chang, Man-Ling; Mohua, Zhang
This study evaluated whether two people with developmental disabilities would be able to actively perform simple occupational activities to control their preferred environmental stimulation using a Nintendo Wii Remote Controller with a newly developed three-dimensional object orientation detection program (TDOODP, i.e. a new software program,…
This study assessed whether two persons with developmental disabilities would be able to actively perform simple occupational activities by controlling their favorite environmental stimulation using battery-free wireless mice with a newly developed object location detection program (OLDP, i.e., a new software program turning a battery-free…
Shooshtari, Shahin; Brownell, Marni; Mills, Rosemary S. L.; Dik, Natalia; Yu, Dickie C. T.; Chateau, Dan; Burchill, Charles A.; Wetzel, Monika
Background: Little information exists on health of children with developmental disabilities (DDs) in the Canadian province of Manitoba. Method: The present authors linked 12 years of administrative data and compared health status, changes in health and access to health and social services between children with (n = 1877) and without (n = 5661) DDs…
Hall, Julie; Morgan, Robert L.; Salzberg, Charles L.
We investigated the effects of preference and degree of match on job performance of four 19 to 20-year-old young adults with developmental disabilities placed in community-based job conditions. We identified high-preference, high-matched and low-preference, low-matched job tasks using a video web-based assessment program. The job matching…
Kagohara, Debora M.; van der Meer, Larah; Ramdoss, Sathiyaprakash; O'Reilly, Mark F.; Lancioni, Giulio E.; Davis, Tonya N.; Rispoli, Mandy; Lang, Russell; Marschik, Peter B.; Sutherland, Dean; Green, Vanessa A.; Sigafoos, Jeff
We conducted a systematic review of studies that involved iPods[R], iPads[R], and related devices (e.g., iPhones[R]) in teaching programs for individuals with developmental disabilities. The search yielded 15 studies covering five domains: (a) academic, (b) communication, (c) employment, (d) leisure, and (e) transitioning across school settings.…
Hubbard, Kristie L.; Bandini, Linda G.; Folta, Sara C.; Wansink, Brian; Must, Aviva
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…
Erickson, Steven R.; Salgado, Teresa M.; Tian, Xi
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…
Shivers, Carolyn M.; Dykens, Elisabeth M.
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…
Butterly, Felicity; Percy, Carol; Ward, Gillian
The aim of this study was to identify the outcomes expected and assessed by those providing service dogs to children with developmental disabilities. Seventeen registered service dog providers were invited to complete a mixed methods online survey. Five providers, who prepared dogs to work with a wide range of conditions and behaviours, mainly…
This study investigated the perspectives of 23 first-generation Asian American mothers of children with developmental disabilities. The intent was to explore the working relationships between the mothers and professionals in health care and special education in the United States. The participants in this study were from China, Taiwan, Vietnam,…
Lotan, M.; Moe-Nilssen, R.; Ljunggren, A. E.; Strand, L. I.
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…
Greenway, Rosanne; McCollow, Meaghan; Hudson, Roxanne F.; Peck, Charles; Davis, Carol A.
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…
Investigating the Acquisition, Generalization, and Emergence of Untrained Verbal Operants for Mands Acquired Using the Picture Exchange Communication System in Adults with Severe Developmental Disabilities
Ziomek, M. M.; Rehfeldt, R. A.
This study compared the total amount of training time and total number of trial blocks for individuals with severe developmental disabilities to acquire mands under control of unconditioned establishing operations and mands under control of transitive conditioned establishing operations for manual sign and for the Picture Exchange Communication…
Thackeray, Lisa A.; Eatough, Virginia
Background: The predominant focus of extant literature exploring maternal experience of developmental disability has been stress, adaptation, efficacy of interventions and the burden of care. Most studies involve mothers of children, with scant attention given to what life is like later. This study qualitatively explores the experience of mothers…
Woodman, A. C.; Hauser-Cram, P.
Background: Parents of children with developmental disabilities (DD) face greater caregiving demands than parents of children without DD. There is considerable variability in parents' adjustment to raising a child with DD, however. In line with a strengths-based approach, this study explores coping strategies as potential mechanisms of resilience…
Shih, Ching-Hsiang; Chang, Man-Ling
The latest researches have adopted software technology, turning the Nintendo Wii Balance Board into a high performance standing location detector with a newly developed standing location detection program (SLDP). This study extended SLDP functionality to assess whether two people with developmental disabilities would be able to actively perform…
This study evaluated whether two people with developmental disabilities would be able to actively perform simple physical activities by controlling their favorite environmental stimulation using Nintendo Wii Balance Boards with a newly developed standing location detection program (SLDP, i.e., a new software program turning a Nintendo Wii Balance…
Enabling People with Developmental Disabilities to Actively Follow Simple Instructions and Perform Designated Physical Activities According to Simple Instructions with Nintendo Wii Balance Boards by Controlling Environmental Stimulation
Shih, Ching-Hsiang; Chung, Chiao-Chen; Shih, Ching-Tien; Chen, Ling-Che
The latest researches have adopted software technology turning the Nintendo Wii Balance Board into a high performance standing location detector. This study extended Wii Balance Board functionality to assess whether two people with developmental disabilities would be able to actively perform designated physical activities according to simple…
Stoesz, Brenda M.; Shooshtari, Shahin; Montgomery, Janine; Martin, Toby; Heinrichs, Dustin J.; Douglas, Joyce
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…
Prevalence of Autism Spectrum Disorders: Autism and Developmental Disabilities Monitoring Network, United States, 2006. Morbidity and Mortality Weekly Report. Surveillance Summaries. Volume 58, Number SS-10
Problem/Condition: Autism spectrum disorders (ASDs) are a group of developmental disabilities characterized by atypical development in socialization, communication, and behavior. ASDs typically are apparent before age 3 years, with associated impairments affecting multiple areas of a person's life. Because no biologic marker exists for ASDs,…
Bacon, Ansley; Walker, Hill M.; Schwartz, Allen A.; O'Hara, David M.; Calkins, Carl; Wehmeyer, Michael L.
The public's increasing demands for greater accountability and a better return on investment from research supported by federal funding requires that organizations studying and solving problems in areas like health, education, disability, and child mental health document the impact of their work. Human service and educational professionals agree…
Hutchinson, Nancy L.; Pyle, Angela; Villeneuve, Michelle; Dods, Jennifer; Dalton, C. J.; Minnes, Patricia
Research has shown the benefits of parent involvement for student participation in education. Parent advocacy is a critical form of involvement by parents for children who are young, have disabilities, and are making transitions. Studies have classified forms of parent advocacy but have not illuminated the components necessary for effective parent…
Marks, Beth; Sisirak, Jasmina; Heller, Tamar
For people with disabilities, a good health and nutrition program can have life-changing results: more energy, increased knowledge, more confidence and self-esteem, and fewer serious health issues such as obesity, diabetes, and heart disease. This innovative, easy-to-implement curriculum is the perfect way to help adults build healthy…
Kreiner, Janice; Flexer, Robert
The purpose of this study was to develop and to evaluate the Preferences for Leisure Attributes (PLA) Assessment, a forced-choice computer software program for students with severe disabilities and communication difficulties. In order to determine content validity of the PLA Assessment, four experts in related fields assigned critical attributes…
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.
Matson, Johnny L., Ed.; Laud, Rinita B., Ed.; Matson, Michael L., Ed.
In the last few decades, the field of dual diagnosis as applied to those with intellectual disabilities has boasted a monumental surge in assessment devices and treatment approaches. These relatively recent advances include those in the development of behavior modification principles and procedures that have had a dramatic impact on services for…
Gambling, Tina S; Long, Andrew F
To explore the experiences of young women with developmental dysplasia of the hip explicating the impact of peri-acetabular osteotomy surgery and recovery in the short and longer term. Postings of five, selected women on an online active message board aimed at women with developmental dysplasia of the hip were analysed. Interest lay on their postings after they had had peri-acetabular osteotomy surgery. Data analysis was performed through the approach of interpretive phenomenological analysis. The time length of the postings for the cases ranged from 1 year to 6 years, and the number of postings varied substantially, from 48 to 591. Two major concepts were prominent across participants' accounts. The first concept, 'body image', centred on affects on the women's self-esteem and body image. The second, 'the long road to recovery', highlighted 'the emotional and physical battle of learning to walk' and concerns with 'saving my joints'. Developmental dysplasia of the hip potentially provides a critical case for exploration of the process of how a disability can affect confidence, self-esteem and body image. Recovery from this condition requires enormous effort, resilience and commitment from the women.
Wong, Fu Keung Daniel; Poon, Ada
This study attempted to test the efficacy of a culturally attuned cognitive behavioural therapy (CBT) group for Chinese parents with children with developmental disabilities at risk of developing mental health problems in Melbourne, Australia. It was hypothesized that the participants in the experimental group would have less parenting stress and fewer dysfunctional attitudes, rules, and values, and better mental health and quality of life than the participants in the control group post-test. A total of 58 participants were randomly assigned into CBT and waiting list control groups. While ANCOVAs were used to compare the differences in General Health Questionnaires-12 (GHQ-12), Parenting Stress Index- Parent Domain (PSI-PD), Quality of Life Enjoyment and Satisfaction Questionnnaire-18 (Q-LES-Q-18) and Dysfunctional Attitude Scale (DAS) between participants of the experiemental and control groups, effect size statistics were performed to measure the magnitude of changes in the above instruments at post treatment. After ten weeks of treatment, the participants in the CBT group showed significant improvement in GHQ-12, Parenting Stress Index (PSI)-Parent Domain and Q-LES-Q-18 scores, but not in DAS scores. The effect size statistics revealed large differences in GHQ-12, PSI-Parent Domain and Q-LES-Q-18 scores between the participants in the experimental and control groups at post-treatment. When a GHQ score of 4 or greater was used as the recommended cut-off score, about 89% and 10% of the participants in the experimental and control groups, respectively, were classified as not at-risk cases at post-treatment. The initial findings suggest that a culturally attuned CBT group may help Chinese parents with children with developmental disabilities to reduce their parenting stress and improve their general mental health and quality of life.
Lucyshyn, Joseph M; Fossett, Brenda; Bakeman, Roger; Cheremshynski, Christy; Miller, Lynn; Lohrmann, Sharon; Binnendyk, Lauren; Khan, Sophia; Chinn, Stephen; Kwon, Samantha; Irvin, Larry K
The efficacy and consequential validity of an ecological approach to behavioral intervention with families of children with developmental disabilities was examined. The approach aimed to transform coercive into constructive parent-child interaction in family routines. Ten families participated, including 10 mothers and fathers and 10 children 3-8 years old with developmental disabilities. Thirty-six family routines were selected (2 to 4 per family). Dependent measures included child problem behavior, routine steps completed, and coercive and constructive parent-child interaction. For each family, a single case, multiple baseline design was employed with three phases: baseline, intervention, and follow-up. Visual analysis evaluated the functional relation between intervention and improvements in child behavior and routine participation. Nonparametric tests across families evaluated the statistical significance of these improvements. Sequential analyses within families and univariate analyses across families examined changes from baseline to intervention in the percentage and odds ratio of coercive and constructive parent-child interaction. Multiple baseline results documented functional or basic effects for 8 of 10 families. Nonparametric tests showed these changes to be significant. Follow-up showed durability at 11 to 24 months postintervention. Sequential analyses documented the transformation of coercive into constructive processes for 9 of 10 families. Univariate analyses across families showed significant improvements in 2- and 4-step coercive and constructive processes but not in odds ratio. Results offer evidence of the efficacy of the approach and consequential validity of the ecological unit of analysis, parent-child interaction in family routines. Future studies should improve efficiency, and outcomes for families experiencing family systems challenges.
Alexandre, Tiago da Silva; Corona, Ligiana Pires; Nunes, Daniella Pires; Santos, Jair Lício Ferreira; Duarte, Yeda Aparecida de Oliveira; Lebrão, Maria Lúcia
Determining the groups that are most susceptible to developing disability is essential to establishing effective prevention and rehabilitation strategies. The aim of the present study was to determine gender differences in the incidence of disability regarding activities of daily living (ADL) and determinants among elderly residents of Sao Paulo, Brazil. In 2000, 1634 elderly with no difficulties regarding ADL (modified Katz Index) were selected. These activities were reassessed in 2006 and disability was the outcome for the analysis of determinants. The following characteristics were analyzed at baseline: socio-demographic, behavioral, health status, medications, falls, hospitalizations, depressive symptoms, cognition, handgrip, mobility and balance. The incidence density was 42.4/1000 women/year and 17.5/1000 men/year. After adjusting for socioeconomic status and health conditions, women with chronic diseases and social vulnerability continued to have a greater incidence of disability. The following were determinants of the incidence of disability: age and depressive symptoms in both genders; stroke and slowness on the sit-and-stand test among men; and osteoarthritis and sedentary lifestyle among women. Better cognitive performance and handgrip strength were protective factors among men and women, respectively. Adverse clinical and social conditions determine differences between genders regarding the incidence of disability. Decreased mobility and balance and health conditions that affect the central nervous system or lead to impaired cognition disable men more, whereas a sedentary lifestyle, reduction in muscle strength and conditions that affect the osteoarticular system disable women more. Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.
Marshall, Elaine Sorensen; Olsen, Susanne Frost; Mandleco, Barbara L; Dyches, Tina Taylor; Allred, Keith W; Sansom, Nancy
The presence of a child with disabilities elicits a variety of stress demands on the family. Religion is recognized as a powerful personal, family, and cultural variable. However, little is known about the influence of religion in dealing with disability among families within particular religious groups. This descriptive study explored themes of spiritual belief and religious support among families of the Church of Jesus Christ of Latter-Day Saints (LDS, or Mormon) with a child with developmental disabilities. Parents shared perspectives of meaning that emerged from experiences with religion and family beliefs perceived to be unique. The core theme, "This is a Spiritual Experience," provides the foundation for a descriptive model that depicts aspects of finding meaning and perceived transcendence.
Lee, Danbi; Hammel, Joy; Wilson, Tom
This study describes implementation and evaluation of the Stepping Stones program, a community living management program designed to assist people with disabilities to gain community living skills after moving out of nursing homes. Thirteen people with diverse disabilities participated in the 10-week Stepping Stones program. The participants attended two sessions a day every week, over a 5-week period. Interviewer-administered surveys were used at baseline and 1 week post-intervention to evaluate the impact of the program. Focus group interviews were conducted at 1 week post-intervention. Analyses of quantitative data demonstrated improved self-efficacy in community living management skills, with medium-to-high effect sizes. Participants reported improved sense of empowerment and confidence in finding resources and managing community living. They also reported high satisfaction with the program. Preliminary findings suggest that the Stepping Stones program is beneficial to the target group. The study indicates that application of social learning and self-efficacy theories is effective to empower and enable people with disabilities to manage their lives in the community. The Stepping Stones program may be provided as a risk management intervention after individuals' transition into the community. Implications for Rehabilitation Long-term institutionalization negatively influences people with disabilities' self-esteem, autonomy and ability to independently live in the community. Successful community living requires complex management involving the coordination of personal, social, resource and environmental factors. This study shows that programming on choice and control and community living skill development improved participants' confidence in managing community living.
Mitchell, Darcy B; Szczerepa, Alexandra; Hauser-Cram, Penny
Family cohesion relates to positive outcomes for both parents and children. Maintaining cohesion may be especially challenging for families of adolescents with developmental disabilities, yet this has been studied infrequently in this group. We investigated cohesion in these families, particularly with respect to partner stress, using the notion of the 'spillover effect' as a model. Adolescents with disabilities and their parents participated. Parents reported on teen adaptive and problem behaviours and on marital satisfaction, parenting stress, and family cohesion. The stress of one partner was tested as a predictor of the quality of family cohesion reported by the other. Adolescent behaviour problems were negative predictors of family cohesion in mothers, and marital satisfaction positively predicted cohesion for both parents. Above other factors, greater partner stress predicted poorer family cohesion for both fathers and mothers. Marital satisfaction acted as a suppressor of this relation. To improve the overall climate of families, care providers should take into consideration individual relationships, including the marital relationship. In addition, the possibility of spillover from one individual to another should be recognized as a factor in family functioning. Family-centred practices are likely to lead to greater feelings of cohesion and overall better individual and family well-being. Copyright © 2015 Elsevier Ltd. All rights reserved.
Szymanski, L S; Seppala, H T
This article describes features of Finland's specialized family care for children with disabilities, including professionalization and training of foster parents and the establishment of municipal employee-like status for them, long-term placements, and the preservation of relationships with biological families whenever possible. A case example of a 12-year-old child with mental retardation and autistic disorder who is in specialized care is included.
Full Text Available Despite increased awareness and concern about children with developmental disabilities wandering away from adult supervision, there is a paucity of research about elopement. This is the first study to examine and report the prevalence and correlates of elopement in a nationally representative sample of school-age children in the United States with an autism spectrum disorder (ASD and/or cognitive impairment. Data were obtained from the CDC's "Pathways" Survey, a follow-up telephone survey of the parents of 4,032 children with a developmental condition. 3,518 children that had ASD, intellectual disability (ID, and/or developmental delay (DD at the time of survey administration were included for analysis. Children were divided into three condition groups: ASD-only; ID/DD-only; ASD+ID/DD. Logistic regression analyses were used to compare the prevalence of elopement and rates of preventive measure use (barriers and/or electronic devices across condition groups, and to examine the clinical and demographic correlates of elopement. T-tests were also performed to compare scores on the Children's Social Behavior Questionnaire (CSBQ between wanderers and non-wanderers. Overall, 26.7% of children had reportedly eloped within the previous year, most commonly from public places. Children with ASD-only and ASD+ID/DD were more likely to have eloped than those with ID/DD-only. Across all groups, wanderers scored higher than non-wanderers on five out of six CSBQ subscales; they were more likely not to realize when there is danger, to have difficulty distinguishing between strangers and familiar people, to show sudden mood changes, to over-react to everything/everyone, to get angry quickly, to get lost easily, and to panic in new situations or if change occurs. Even after controlling for elopement history, parents of children in the ASD+ID/DD group were more likely than those in the other condition groups to report using physical or electronic measures to prevent
Tuffrey-Wijne, I; Rose, T
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.
Bishop, Jeffery; Sunderland, Naomi
What is it like to live with the label "Disability?" NIB editorial staff and narrative symposium editors, Jeffery Bishop and Naomi Sunderland developed a call for stories, which was sent to several list serves, shared with the 1000 Voices Project community and posted on Narrative Inquiry in Bioethics' website. The request for personal stories from people who identify with the label "disabled" asked them to: consider how the label "disability" interacts with other aspects of their life in health care settings; does the term "disability" reflect their actual embodied experiences of impairment or does it fail to do justice to their particular experience of impairment; describe the kind of experiences that are possible because of the impairment(s); discuss how the label has affected their "authentic voice"; and many other concepts about what effects the label has on their lives. These authors share deeply personal experiences that will help readers understand their world, challenges, and joys. Thirteen stories are found in the print version of the journal and an additional five supplemental stories are published online only through Project MUSE. The stories are complemented by four commentary articles by Elizabeth R. Schiltz; Lorna Hallahan; Nicole Matthews, Kathleen Ellem, and Lesley Chenoweth; and Jeffery Bishop, Rachelle Barina, and Devan Stahl. These scholars come from the disciplines of law, social work, media studies, medicine, and bioethics from Australia and the United States. Together, the symposium's storytellers and commentators offer striking and informative insights into the everydayness of living with disabilities.
Paraponaris, Alain; Davin, Bérengère; Verger, Pierre
Choices between formal and informal care for disabled elderly people living at home are a key component of the long-term care provision issues faced by an ageing population. This paper aims to identify factors associated with the type of care (informal, formal, mixed or no care at all) received by the French disabled elderly and to assess the care's relative costs. This paper uses data from a French survey on disability; the 3,500 respondents of interest lived at home, were aged 60 and over, had severe disability and needed help with activities of daily living. We use a multinomial probit model to determine factors associated with type of care. We also assess the cost of care with the help of the proxy good method. One-third of disabled elderly people receive no care. Among those who are helped, 55% receive informal, 25% formal, and 20% mixed care. Low socioeconomic status increases difficulties in accessing formal care. The estimated economic value of informal care is 6.6 billion euro [95% CI = 5.9-7.2] and represents about two-thirds of the total cost of care. Public policies should pay more attention to inequalities in access to community care. They also should better support informal care, through respite care or workplace accommodations (working hours rescheduling or reduction for instance) not detrimental for the career of working caregivers.
Autism spectrum disorder (ASD). 2010. The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance system in the United States that provides estimates of the prevalence of ASD and other characteristics among children aged 8 years whose parents or guardians live in 11 ADDM sites in the United States. ADDM surveillance is conducted in two phases. The first phase consists of screening and abstracting comprehensive evaluations performed by professional providers in the community. Multiple data sources for these evaluations include general pediatric health clinics and specialized programs for children with developmental disabilities. In addition, most ADDM Network sites also review and abstract records of children receiving special education services in public schools. The second phase involves review of all abstracted evaluations by trained clinicians to determine ASD surveillance case status. A child meets the surveillance case definition for ASD if a comprehensive evaluation of that child completed by a qualified professional describes behaviors consistent with the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR) diagnostic criteria for any of the following conditions: autistic disorder, pervasive developmental disorder-not otherwise specified (including atypical autism), or Asperger disorder. This report provides updated prevalence estimates for ASD from the 2010 surveillance year. In addition to prevalence estimates, characteristics of the population of children with ASD are described. For 2010, the overall prevalence of ASD among the ADDM sites was 14.7 per 1,000 (one in 68) children aged 8 years. Overall ASD prevalence estimates varied among sites from 5.7 to 21.9 per 1,000 children aged 8 years. ASD prevalence estimates also varied by sex and racial/ethnic group. Approximately one in 42 boys and one in 189 girls living in the ADDM Network communities were identified as having ASD
Zaal-Schuller, I H; de Vos, M A; Ewals, F V P M; van Goudoever, J B; Willems, D L
The objectives of this integrative review were to understand how parents of children with severe developmental disorders experience their involvement in end-of-life decision-making, how they prefer to be involved and what factors influence their decisions. We searched MEDLINE, EMBASE, CINAHL and PsycINFO. The search was limited to articles in English or Dutch published between January 2004 and August 2014. We included qualitative and quantitative original studies that directly investigated the experiences of parents of children aged 0-18 years with severe developmental disorders for whom an end-of-life decision had been considered or made. We identified nine studies that met all inclusion criteria. Reportedly, parental involvement in end-of-life decision-making varied widely, ranging from having no involvement to being the sole decision-maker. Most parents preferred to actively share in the decision-making process regardless of their child's specific diagnosis or comorbidity. The main factors that influenced parents in their decision-making were: their strong urge to advocate for their child's best interests and to make the best (possible) decision. In addition, parents felt influenced by their child's visible suffering, remaining quality of life and the will they perceived in their child to survive. Most parents of children with severe developmental disorders wish to actively share in the end-of-life decision-making process. An important emerging factor in this process is the parents' feeling that they have to stand up for their child's interests in conversations with the medical team. Copyright © 2015 Elsevier Ltd. All rights reserved.
Hopman-Rock, M.; Kraaimaat, F. W.; Odding, E.; Bijlsma, J. W.
To investigate the use of pain coping strategies by community-living older people with pain in the hip or knee and the mediating role of coping with pain in the relationship between the chronicity of pain and physical disability. A group of 157 people with pain "in the last month" was identified.
Dispenza, Franco; Elston, Nikki C.; Huffstead, Mary E.; Suttles, Mackenzie G.; Golubovic, Nedeljko
Purpose: To identify meaningful educative experiences that contributed to the development of rehabilitation counselors' abilities to provide effective rehabilitation counseling services to lesbian, gay, bisexual, transgender, and queer (LGBTQ) persons living with chronic illness/disabilities (CID). Method: This was a secondary analysis of a larger…
Suijker, Jacqueline J.; van Rijn, Marjon; Buurman, Bianca M.; ter Riet, Gerben; van Charante, Eric P. Moll; de Rooij, Sophia E.
Background To evaluate the effects of nurse-led multifactorial care to prevent disability in community-living older people. Methods In a cluster randomized trail, 11 practices (n = 1,209 participants) were randomized to the intervention group, and 13 practices (n = 1,074 participants) were
Hylkema, T.; Petitiaux, W.; Vlaskamp, C.
While sleep problems in people with intellectual disabilities (ID) living in residential settings are very common, scant attention is paid to them. This study examined how to improve the knowledge and understanding of sleep quality and sleep problems in people with ID among care staff at a
Full Text Available As the first of the Boomers reach age 65 in 2011, it is of great interest to identify trends in disability to better predict future needs and resources within community care. This paper uses data from four national datasets to investigate trends in disability rates and examine socio-demographic characteristics associated with disability. Results show a decrease in the overall disability prevalence rate. However, no significant trend in levels of disability was identified for the period 1994/95–2000/01 when controlling for socio-demographic variables, suggesting stability in the probability of being disabled over time.
Tam, Cynthia; Schwellnus, Heidi; Eaton, Ceilidh; Hamdani, Yani; Lamont, Andrea; Chau, Tom
Children with severe physical disabilities often lack the physical skills to explore their environment independently, and to play with toys or musical instruments. The movement-to-music (MTM) system is an affordable computer system that allows children with limited movements to play and create music. The present study explored parents' experiences of using the MTM system with their children. A qualitative methodology employing in-depth interview techniques was used with six mothers and their children. The themes extracted from the data were organized under two main concepts of the International Classification of Functioning, Disability, and Health (ICF) (WHO, 2001) framework. The results showed that the MTM expanded horizons for the child along the ICF health dimensions and the MTM had a positive impact on ICF environmental determinants of health. The small sample size should be noted as a limitation of this study. Further research should be carried out with a larger sample of children with restricted mobility to obtain a better understanding of the impact of MTM technology on children's psychosocial development.
O'Brien, Connie Lyle; O'Brien, John
This booklet highlights some of the insights that five mothers of children with developmental disabilities have gained after a generation of working together to improve the lives of people with developmental disabilities in Wisconsin. It discusses civic activism, the critical importance of organized parent support, difficulties in collaborating…
Christensen, Deborah L; Baio, Jon; Van Naarden Braun, Kim; Bilder, Deborah; Charles, Jane; Constantino, John N; Daniels, Julie; Durkin, Maureen S; Fitzgerald, Robert T; Kurzius-Spencer, Margaret; Lee, Li-Ching; Pettygrove, Sydney; Robinson, Cordelia; Schulz, Eldon; Wells, Chris; Wingate, Martha S; Zahorodny, Walter; Yeargin-Allsopp, Marshalyn
Autism spectrum disorder (ASD). 2012. The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance system that provides estimates of the prevalence and characteristics of ASD among children aged 8 years whose parents or guardians reside in 11 ADDM Network sites in the United States (Arkansas, Arizona, Colorado, Georgia, Maryland, Missouri, New Jersey, North Carolina, South Carolina, Utah, and Wisconsin). Surveillance to determine ASD case status is conducted in two phases. The first phase consists of screening and abstracting comprehensive evaluations performed by professional service providers in the community. Data sources identified for record review are categorized as either 1) education source type, including developmental evaluations to determine eligibility for special education services or 2) health care source type, including diagnostic and developmental evaluations. The second phase involves the review of all abstracted evaluations by trained clinicians to determine ASD surveillance case status. A child meets the surveillance case definition for ASD if one or more comprehensive evaluations of that child completed by a qualified professional describes behaviors that are consistent with the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision diagnostic criteria for any of the following conditions: autistic disorder, pervasive developmental disorder-not otherwise specified (including atypical autism), or Asperger disorder. This report provides ASD prevalence estimates for children aged 8 years living in catchment areas of the ADDM Network sites in 2012, overall and stratified by sex, race/ethnicity, and the type of source records (education and health records versus health records only). In addition, this report describes the proportion of children with ASD with a score consistent with intellectual disability on a standardized intellectual ability test, the age at which the earliest known
Zeng, Yi; Feng, Qiushi; Hesketh, Therese
age at the time of the assessment in the 1998 and 2008 surveys. Four health outcomes were investigated: annual death rate, Activities of Daily Living (ADL), physical performance in three tests and cognitive function measured by Mini-Mental State Examination (MMSE). We used different tests......BACKGROUND: The oldest-old (those aged ≥80 years) are the most rapidly growing age group globally, and are most in need of health care and assistance. We aimed to assess changes in mortality, disability in activities of daily living, and physical and cognitive functioning among oldest......, and that disability according to activities of daily living had significantly reduced annually between 0·8% and 2·8%. However, cognitive impairment in the later cohorts increased annually between 0·7% and 2·2% and objective physical performance capacity (standing up from a chair, picking up a book from the floor...
Gelsomini, Mirko; Garzotto, Franca; Montesano, Daniele; Occhiuto, Daniele
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.
This paper engages with the emerging disciplinary clash between 'care' and 'independence' within disability studies by examining the geography of home care for young adults with intellectual disabilities. The care system as a whole is viewed as central to disablist structures within disability studies (see Thomas, C. (2007). Sociologies of disability and illness: Contested ideas in disability studies and medical sociology. Hampshire: Palgrave Macmillan.). However, despite the theorisation of dependency as being in antipathy to the goals of the disability movement, caregiving at home still continues to dominate community care. The paper attempts to address how family carers are 'caught-in-the-middle' between their 'duty' to care and at the same time, perpetuating dependency; the reality being that parents have to deal with issues of being overprotective and confronting various social assumptions about disability. It examines the narratives from 25 family caregivers in Ireland who provide personal assistance to young adults with intellectual disabilities.
Lund, Rikke; Nilsson, Charlotte Juul; Avlund, Kirsten
population of 2,697 non-disabled older men and women from The Danish Longitudinal Study on Preventive Home Visits. RESULTS: living alone and low social participation were significant risk factors for later male disability onset. Not being satisfied with the social relations was significantly associated...... with onset of disability for both genders. Among men who lived alone low social participation was a significant predictor of disability onset [odds ratio, OR = 2.30 (1.00-5.29)]; for cohabiting men social participation was not associated with disability onset, [adjusted OR = 0.91 (0.49-1.71)]. Similar...... results were present concerning satisfaction with the social relations among men. There was no significant interaction for women. CONCLUSIONS: the study suggests that men who live alone can possibly alleviate their risk of disability onset by being socially active and by having access to satisfactory...
Despite legal advancements recognizing the rights of individuals with disabilities, societal barriers are still arising from the medical model of disability. These obstacles have resulted in marginalizing and isolating practices, in turn leading to the underrepresentation of individuals with disabilities in the workforce and, by extension, in…
Research has generally amalgamated minority ethnic (all called "Asian" or "black") disabled young people's experiences and failed to acknowledge the multiple aspects of Asian and black disabled identities, for example how the combined attributes of race, ethnicity, religion, gender, culture, class and disability shape their…
Mullins, Laura; Preyde, Michele
University institutions are required by law to make their services accessible to students with disabilities. Canadian universities have gone a long way to eliminate the physical obstacles that present barriers for students. Many students with disabilities have invisible disabilities that require different types of adjustments. Although some…
Suddendorf, Thomas; Simcock, Gabrielle; Nielsen, Mark
Three experiments (N = 123) investigated the development of live-video self-recognition using the traditional mark test. In Experiment 1, 24-, 30- and 36-month-old children saw a live video image of equal size and orientation as a control group saw in a mirror. The video version of the test was more difficult than the mirror version with only the…
Summers, Janet; Larkin, Dawne; Dewey, Deborah
In order to understand how age, culture, and problems in motor coordination impact the performance of activities of daily living, we used focus groups and in-depth interviews with Australian and Canadian parents to examine activities of daily living of younger (5-7 years of age) and older (8-9 years of age) children with and without DCD. By comparison with their typically developing age group, children with DCD had more difficulty with dressing, personal hygiene, and eating skills. Difficulties with postural control and fine-motor skills were reported to contribute to poorer performance of activities of daily living. As expected, competence in the performance of activities of daily living improved in the older children with and without DCD and there were few differences in the performance of daily living tasks between typical children in Australia and Canada. Overall, the motor difficulties of children with DCD had a significant impact on performance of a wide range of daily activities.
Full Text Available Objectives: Over the next 30 years there will be a considerable increase in the number of elderly parents of children with intellectual disability. The present article is a part of a phenomenological study on the lived experience of elderly parents of children with intellectual disability which focuses on the issue of spirituality. There is insufficient scientific evidences related to this important phenomenon. Methods & Materials: Based on a purposeful sampling, ten elderly parents of children with intellectual disability (5 mothers and 5 fathers took part in the un-structured deep interviews. The data were analyzed using a Colaizzi phenomenological approach. Results: “Spirituality” was one of the four identified emergent themes. The other emergent themes were “Bitterness” ,”Emotional attachment”, ”Support satisfaction”. Despite of having difficulties in caregiving to the child with disability, the parents appreciate God and consider the child as his will. They also trust in God when facing problems. Conclusion: In the current study, spirituality was emerged as an important theme. The participants do believe that having a child with disability is God's will and even his bless. In this way of thinking, suffering and sorrows become tolerable, less painful and even valuable. Spirituality could be considered as a part of care plans for the elderly parents of children with intellectual disability. Since this phenomenon is a process it would be better to investigate that by Grounded Theory approach.
Rodriguez-Blazquez, Carmen; Rojo-Abuin, Jose Manuel; Alvarez-Sanchez, Mario; Arakaki, Tomoko; Bergareche-Yarza, Alberto; Chade, Anabel; Garretto, Nelida; Gershanik, Oscar; Kurtis, Monica M; Martinez-Castrillo, Juan Carlos; Mendoza-Rodriguez, Amelia; Moore, Henry P; Rodriguez-Violante, Mayela; Singer, Carlos; Tilley, Barbara C; Huang, Jing; Stebbins, Glenn T; Goetz, Christopher G; Martinez-Martin, Pablo
To evaluate the motor experiences of daily living section of the Movement Disorders Society-Unified Parkinson's Disease Rating Scale (MDS-UPDRS M-EDL) for assessing disability in PD patients; to determine the association between disability and quality of life; and to identify cut-off score ranges for no, mild, moderate and severe disability with this measure. International, observational, cross-sectional study of 435 PD patients, assessed with: MDS-UPDRS, Hoehn and Yahr staging, Rapid Assessment of Disability Scale, Clinical Impression of Severity Index for PD, Parkinson's Disease Questionnaire-8 and EQ-5D. Descriptive statistics, Spearman's rank correlation coefficients, Kruskal-Wallis test for group comparisons, ordinal logistic regression analysis for setting cut-off values and a step-wise multiple linear regression model were calculated. MDS-UPDRS M-EDL correlated 0.70-0.80 with other disability measures, and -0.46 to 0.74 with quality of life scales. Scores significantly increased with higher disease duration and severity (p MDS-UPDRS nM-EDL section as the main determinant of M-EDL, followed by the rest of MDS-UPDRS sections (explained variance: 59%). MDS-UPDRS M-EDL proved to be useful for assessing disability in PD. Copyright © 2013 Elsevier Ltd. All rights reserved.
Qian, X; Tichá, R; Larson, S A; Stancliffe, R J; Wuorio, A
Being engaged in daily activities is a strong indicator of quality of life for individuals with intellectual disability (ID) who live in small community group homes. This study aimed to identify individual and organisational factors that predict high levels of engagement. Individuals with ID (n = 78), direct support professionals (DSPs; n = 174) and supervisors (n = 21) from 21 US group homes participated in the study. For each individual with ID, we conducted 80 min of observation at the person's residence. Information was also gathered regarding demographic characteristics, DSP competence, supervisor years of experience and management practices. Data were analysed using multilevel modelling. On average, individuals were engaged in social activities 12% of observed time and non-social activities 35% of the time. Individuals with greater adaptive skills who were supported by more competent staff showed significantly higher levels of social engagement. Individuals with less severe deficits in adaptive behaviours and less challenging behaviour showed higher levels of non-social engagement. Although none of the factors related to group homes were significant, 24% of the variance in non-social engagement existed among group homes. These results suggested that engagement is a dynamic construct. The extent to which an individual with ID is engaged in daily life is a result of interplay between the individual's characteristics and the group home environment. Future research is needed to investigate the influence of variables specific to the group home on the engagement level of individuals with disabilities. © 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.
Idland, Gro; Pettersen, Renate; Avlund, Kirsten
non-disabled community-dwelling women with a mean age of 79.5 years at baseline. The baseline examinations of physical performance were: functional reach, climbing steps and comfortable walking speed. ADL disability was defined as need of personal assistance in at least one of five basic ADL items......Disability in ADL of aging women is an important public health concern. It is thus of interest to identify modifiable factors underlying onset of ADL disability. We assessed whether three physical performance-based measurements could predict ADL disability 9 years later. The participants were 113....... The participants were followed for 9 years. Logistic regression models were fitted for each of the physical performance measurements together with the covariates in relation to ADL disability. At follow-up 25.7% were disabled in ADL. All three performance measurements were significantly associated with the onset...
Webster, Amanda A; Carter, Mark
One of the most commonly cited rationales for inclusive education is to enable the development of quality relationships with typically developing peers. Relatively few researchers have examined the features of the range of relationships that children with developmental disability form in inclusive school settings. Interviews were conducted with 25 children with developmental disability, aged 5 and 12 years, their 3 closest peers, and parents and teachers to examine 6 types of relationships. Behaviours associated with general friendship and acquaintance were the most commonly reported. Few dyads reported high rates of behaviour associated with special treatment, helping, ignoring, or intimate best friend relationships. The relationships of the majority of dyads were characterised by friendship or acceptance, but evidence of more intimate relationships was limited. An important direction for future research is the examination of ways to encourage more intimate relationships.
Valicenti-McDermott, Maria; Burrows, Bethany; Bernstein, Leora; Hottinger, Kathryn; Lawson, Katharine; Seijo, Rosa; Schechtman, Merryl; Shulman, Lisa; Shinnar, Shlomo
The use of complementary and alternative medicine by children with autism and the association of its use with child comorbid symptoms and parental stress was studied in an ethnically diverse population, in a cross-sectional study with structured interviews. The sample included 50 families of children with autism and 50 families of children with other developmental disabilities, matched by age/gender. Interview included the Complementary and Alternative Medicine Questionnaire, Gastrointestinal Questionnaire, Children's Sleep Habits Questionnaire, Aberrant Behavior Checklist, and Parenting Stress Index. In this ethnically diverse sample, the use of complementary and alternative medicine was significantly higher for the autism group. In the autism group, use was significantly related to child's irritability, hyperactivity, food allergies, and parental stress; in the developmental disabilities group, there was no association with child comorbid symptoms or parental stress. The results contribute information to health care providers about families of children with autism who are more likely to use complementary and alternative medicine.
Full Text Available The article analyses research data and scholarly approaches to the study: of problems of parents arising from their child’s illness; the emotional states of parents raising a child with developmental disabilities; stages of emotional experience related to the birth of a sick child. The family as an integral unit has to face various situations determined by the social impact of the child’s disease or impairment, as well as emotional and psychological reactions of the parents to it. Being aware of the psychological stages singled out in the grief theory helps professionals: to understand the reaction of the family of a child with developmental disabilities; realise when and how it is best to intervene, flexibly apply the theory of stages, and account for the specific characteristics of a particular family and individual reactions to such shocks.
Leung, Cynthia; Fan, Angel; Sanders, Matthew R
The study examined the effectiveness of Group Triple P, a Level 4 variant of the Triple P multilevel system of parenting support, with Chinese parents who had a preschool aged child with a developmental disability, using randomized controlled trial design. Participants (Intervention group: 42; Waitlist Control group: 39) completed measures on child behaviour, parental stress, dysfunctional discipline styles and parental conflict before and after program completion by the Intervention group. Intervention group participants also completed these same measures six months after program completion. Compared to the Waitlist Control group, parents receiving Group Triple P reported significantly lower levels of child behaviour problems, parental stress, dysfunctional discipline style and parental conflict scores. The Intervention group participants maintained their gains six months after program completion. The results provided promising evidence for the Level 4 Group Triple P as an effective intervention program for Chinese parents who have preschool aged children with developmental disabilities. Copyright © 2012 Elsevier Ltd. All rights reserved.
Medina-Mirapeix, Francesc; Lillo-Navarro, Carmen; Montilla-Herrador, Joaquina; Gacto-Sánchez, Mariano; Franco-Sierra, María Á; Escolar-Reina, Pilar
Many families have problems adhering to home exercise programs (HEP) for children with developmental disabilities. However, parental participation in HEP is known to have a positive effect on child-related outcome variables, as well as on parental functioning. This study examined whether the different behaviours of health professionals, and the behaviour and social characteristics of parents determine rates of parental adherence to both the frequency per week, and duration per session, of HEP for children with developmental disabilities attending paediatric services in early intervention centres. In this study, developmental disabilities include those caused by developmental delay or specific health conditions such as cerebral palsy, congenital illness, or others. Survey. Eighteen early intervention centers. Parents of children with developmental disabilities receiving HEP. A self-reported questionnaire was used to examine: whether frequency and duration of weekly exercise sessions was prescribed by physiotherapists; whether the child had received the HEP according to what was prescribed; and items related to the individual, social support, illnesses and the involvement of the health professional. Multiple logistic regression analyses examined their relative relevance. In this study 219 parents participated. The rate of adherence to the prescribed frequency and duration of the HEP was similar (61.4-57.2%). The probability of adherence to both components increased for parents who had a low perception of the existence of barriers for integrating the exercises into their daily routine (OR=2.62 and 4.83). Furthermore, other cognitive factors of parents had a variable influence. The involvement of the professional had a significant impact regarding the frequency of the HEP. Professional involvement increased the probability of exercises being followed accurately by adopting strategies such as: providing information about the progress and evolution of the exercises (OR=3
Lee, Mei-Hua; Bodfish, James W; Lewis, Mark H; Newell, Karl M
This study investigated the mean rate and time-dependent sequential organization of spontaneous eye blinks in adults with intellectual and developmental disability (IDD) and individuals from this group who were additionally categorized with stereotypic movement disorder (IDD+SMD). The mean blink rate was lower in the IDD+SMD group than the IDD group and both of these groups had a lower blink rate than a contrast group of healthy adults. In the IDD group the n to n+1 sequential organization over time of the eye-blink durations showed a stronger compensatory organization than the contrast group suggesting decreased complexity/dimensionality of eye-blink behavior. Very low blink rate (and thus insufficient time series data) precluded analysis of time-dependent sequential properties in the IDD+SMD group. These findings support the hypothesis that both IDD and SMD are associated with a reduction in the dimension and adaptability of movement behavior and that this may serve as a risk factor for the expression of abnormal movements.
Ryan, Cathryn T; Kramer, Jessica M; Cohn, Ellen S
The purpose of this study was to examine the role of the self-disclosure process in regard to connection development and relationship quality in peer mentoring relationships between transition-age youth (ages 15-20) and young adults (ages 18-36) with intellectual and/or developmental disabilities. Self-disclosure is defined as "the disclosure of inner feelings and experiences to another person" that "fosters liking, caring, and trust, thereby facilitating the deepening of close relationships" ( Reis & Shaver, 1988 , p. 372). Nine peer mentoring dyads with varied interpersonal connections were purposefully selected from a larger intervention study. Recorded mentoring conversations were analyzed for self-disclosure content and peer mentor response. The findings demonstrated trends related to connection development and differences across degree of connection. In relationships with stronger connections, there was a higher quantity of self-disclosure and more frequent disclosure of emotions, and peer mentors responded more frequently with advice and reciprocated self-disclosure. Implications of findings for promoting higher-quality peer mentoring relationships are discussed.
Kagohara, Debora M; Sigafoos, Jeff; Achmadi, Donna; van der Meer, Larah; O'Reilly, Mark F; Lancioni, Giulio E
We evaluated an intervention procedure for teaching three students with developmental disabilities to independently operate a portable multimedia device (i.e., an iPod Touch(®)) to listen to music. The intervention procedure included the use of video modeling, which was presented on the same iPod Touch(®) that the students were taught to operate to listen to music. Four phases (i.e., baseline, intervention, fading, and follow-up) were arranged in accordance with a delayed multiple-probe across participants design. During baseline, the students performed from 25 to 62.5% of the task analyzed steps correctly. With intervention, all three students correctly performed 80-100% of the steps and maintained this level of performance when video modeling was removed and during follow-up. The findings suggest that the video modeling procedure was effective for teaching the students to independently operate a portable multimedia device to access age-appropriate leisure content. Copyright © 2011 Elsevier Ltd. All rights reserved.
Bergmann, Thomas; Sappok, Tanja; Diefenbacher, Albert; Dames, Sibylle; Heinrich, Manuel; Ziegler, Matthias; Dziobek, Isabel
The MUSAD was developed as a diagnostic observational instrument in an interactional music framework. It is based on the ICD-10/DSM-5 criteria for autism spectrum disorder (ASD) and was designed to assess adults on a lower level of functioning, including individuals with severe language impairments. This study aimed to evaluate the psychometric properties of the newly developed instrument. Calculations were based on a consecutive clinical sample of N=76 adults with intellectual and developmental disabilities (IDD) suspected of ASD. Objectivity, test-retest reliability, and construct validity were calculated and a confirmatory factor analysis was applied to verify a reduced and optimized test version. The structural model showed a good fit, while internal consistency of the subscales was excellent (ω>.92). Item difficulties ranged between .04≤pi≤.82 and item-total correlation from .21 to .85. Objectivity was assessed by comparing the scorings of two external raters based on a subsample of n=12; interrater agreement was .71 (ICC 2, 1). Reliability was calculated for four test repetitions: the average ICC (3, 1) was .69. Convergent ASD measures correlated significantly with the MUSAD, while the discriminant Modified Overt Aggression Scale (MOAS) showed no significant overlap. Confirmation of factorial structure and acceptable psychometric properties suggest that the MUSAD is a promising new instrument for diagnosing ASD in adults with IDD. Copyright © 2015 Elsevier Ltd. All rights reserved.
Watson, Linda R; Patten, Elena; Baranek, Grace T; Poe, Michele; Boyd, Brian A; Freuler, Ashley; Lorenzi, Jill
To examine patterns of sensory responsiveness (i.e., hyperresponsiveness, hyporesponsiveness, and sensory seeking) as factors that may account for variability in social-communicative symptoms of autism and variability in language, social, and communication skill development in children with autism or other developmental disabilities (DDs). Children with autistic disorder (AD; n = 72, mean age = 52.3 months) and other DDs (n = 44, mean age = 48.1 months) participated in a protocol measuring sensory response patterns; social-communicative symptoms of autism; and language, social, and communication skills. Hyporesponsiveness was positively associated with social-communicative symptom severity, with no significant group difference in the association. Hyperresponsiveness was not significantly associated with social-communicative symptom severity. A group difference emerged for sensory seeking and social-communicative symptom severity, with a positive association for the AD group only. For the 2 groups of children combined, hyporesponsiveness was negatively associated with language skills and social adaptive skills. Sensory seeking also was negatively associated with language skills. These associations did not differ between the 2 groups. Aberrant sensory processing may play an important role in the pathogenesis of autism and other DDs as well as in the rate of acquisition of language, social, and communication skills.
Naseer, Muhammad Imran; Rasool, Mahmood; Jan, Mohammed M; Chaudhary, Adeel G; Pushparaj, Peter Natesan; Abuzenadah, Adel M; Al-Qahtani, Mohammad H
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.
Tanya Marie Evans
Full Text Available Math disability (MD is a neurodevelopmental disorder affecting mathematical abilities. Here we propose a new explanatory account of MD, the Procedural Deficit Hypothesis (PDH, that may further our understanding of the disorder. According to the PDH of MD, abnormalities of brain structures underlying the procedural memory system can lead to difficulties with math skills learned in this system, as well as problems with other functions that depend on these brain structures. This brain-based account is motivated in part by the high comorbidity between MD and language disorders such as dyslexia that may be partly explained by the PDH, as well as by the likelihood that learning automatized math skills should depend on procedural memory. Here we first lay out the PDH of MD, and then present specific predictions, examining the existing literature for each while pointing out weaknesses and gaps to be addressed by future research. Although we do not claim that the PDH is likely to fully explain MD, we do suggest that the hypothesis could have substantial explanatory power, and that it provides a useful theoretical framework that may advance our understanding of the disorder.
I. De Toma
Full Text Available One of the most challenging questions in neuroscience is to dissect how learning and memory, the foundational pillars of cognition, are grounded in stable, yet plastic, gene expression states. All known epigenetic mechanisms such as DNA methylation and hydroxymethylation, histone modifications, chromatin remodelling, and noncoding RNAs regulate brain gene expression, both during neurodevelopment and in the adult brain in processes related to cognition. On the other hand, alterations in the various components of the epigenetic machinery have been linked to well-known causes of intellectual disability disorders (IDDs. Two examples are Down Syndrome (DS and Fragile X Syndrome (FXS, where global and local epigenetic alterations lead to impairments in synaptic plasticity, memory, and learning. Since epigenetic modifications are reversible, it is theoretically possible to use epigenetic drugs as cognitive enhancers for the treatment of IDDs. Epigenetic treatments act in a context specific manner, targeting different regions based on cell and state specific chromatin accessibility, facilitating the establishment of the lost balance. Here, we discuss epigenetic studies of IDDs, focusing on DS and FXS, and the use of epidrugs in combinatorial therapies for IDDs.
Toma, I De; Gil, L Manubens; Ossowski, S; Dierssen, M
One of the most challenging questions in neuroscience is to dissect how learning and memory, the foundational pillars of cognition, are grounded in stable, yet plastic, gene expression states. All known epigenetic mechanisms such as DNA methylation and hydroxymethylation, histone modifications, chromatin remodelling, and noncoding RNAs regulate brain gene expression, both during neurodevelopment and in the adult brain in processes related to cognition. On the other hand, alterations in the various components of the epigenetic machinery have been linked to well-known causes of intellectual disability disorders (IDDs). Two examples are Down Syndrome (DS) and Fragile X Syndrome (FXS), where global and local epigenetic alterations lead to impairments in synaptic plasticity, memory, and learning. Since epigenetic modifications are reversible, it is theoretically possible to use epigenetic drugs as cognitive enhancers for the treatment of IDDs. Epigenetic treatments act in a context specific manner, targeting different regions based on cell and state specific chromatin accessibility, facilitating the establishment of the lost balance. Here, we discuss epigenetic studies of IDDs, focusing on DS and FXS, and the use of epidrugs in combinatorial therapies for IDDs.
Cantwell, Joanne; Muldoon, Orla T; Gallagher, Stephen
To date, much of the research linking the stress of caring for children with developmental disabilities (e.g. Autism & Down syndrome) with parental health outcomes have tended to concentrate on mental health with less attention paid to the physical health consequences. Thus, this study sought to explore the psychosocial predictors of poor physical health in these caring parents. One hundred and sixty-seven parents (109 caregivers and 58 control parents) completed measures of stress, child problem behaviours, social support, mastery and physical health. Parents of children with developmental disabilities had poorer physical health compared to control parents. Stress and mastery, but not social support and problem behaviours, were significant predictors of poor physical health within caring parents for children with developmental disabilities. However, the association between mastery and physical health was mediated by perceived stress such that those parents who were higher on mastery reported less stress and better physical health; furthermore, the association between stress and physical health was moderated by social support; those parents high on social support and low in stress had better physical health. These results indicate that the paths between psychosocial factors and poor physical health in the caring parents are working synergistically rather than in isolation. They also underscore the importance of providing multi-component interventions that offer a variety of psychosocial resources to meet the precise needs of the parents. Copyright © 2014 Elsevier Ltd. All rights reserved.
Lee, JiHyun; Yun, Chang-Kyo
[Purpose] The purpose of this study is to investigate the effect of hippotherapy exercise on the thickness of deep abdominal muscles and daily activities of children with intellectual disabilities. [Subjects and Methods] Seven children with intellectual disabilities were treated with hippotherapy for 30 minutes twice a week for 6 weeks. The thickness of deep abdominal muscles and Functional Independence Measure (FIM) of the subjects were measured by ultrasonography before and after the experiment. [Results] There was no significant change in the thickness of the External Oblique and Internal Oblique muscles, but there was a statistically significant change in Transverse Adbominis thickness and FIM score after treatment compared to before treatment. [Conclusion] Hippotherapy exercise has a positive effect on the improvement of Transverse Abdominis (TrA) and activity of daily livings of children with intellectual disabilities.
Ptomey, Lauren T; Wittenbrook, Wendy
It is the position of the Academy of Nutrition and Dietetics that nutrition services provided by registered dietitian nutritionists (RDNs) and nutrition and dietetics technicians, registered (NDTRs), who work under RDN supervision, are essential components of comprehensive care for adults with intellectual and developmental disabilities (IDD) and children and youth with special health care needs (CYSHCN). Nutrition services should be provided throughout life in a manner that is interdisciplinary, family-centered, community based, and culturally competent. Individuals with IDD and CYSHCN have many risk factors requiring nutrition interventions, including growth alterations (eg, failure to thrive, obesity, or growth retardation), metabolic disorders, poor feeding skills, drug-nutrient interactions, and sometimes partial or total dependence on enteral or parenteral nutrition. Furthermore, these individuals are also more likely to develop comorbid conditions, such as obesity or endocrine disorders that require nutrition interventions. Poor nutrition-related health habits, limited access to services, and long-term use of multiple medications are considered health risk factors. Timely and cost-effective nutrition interventions can promote health maintenance and reduce risk and cost of comorbidities and complications. Public policy for individuals with IDD and CYSHCN has evolved, resulting in a transition from institutional facilities and programs to community and independent living. The expansion of public access to technology and health information on the Internet challenges RDNs and NDTRs to provide accurate scientific information to this rapidly growing and evolving population. RDNs and NDTRs with expertise in this area are best prepared to provide appropriate nutrition information to promote wellness and improve quality of life. Copyright © 2015 Academy of Nutrition and Dietetics. Published by Elsevier Inc. All rights reserved.
Full Text Available As the first of the Boomers reach age 65 in 2011, it is of great interest to identify trends in disability to better predict future needs and resources within community care. This paper uses data from four national datasets to investigate trends in disability rates and examine socio-demographic characteristics associated with disability. Results show a decrease in the overall disability prevalence rate. However, no significant trend in levels of disability was identified for the period 1994/95–2000/01 when controlling for socio-demographic variables, suggesting stability in the probability of being disabled over time.
Truelsen, Thomas Clement
common in adults. For the Global Burden of Diseases, Injuries, and Risk Factors Study 2015 (GBD 2015), we estimated the incidence, prevalence, and years lived with disability for diseases and injuries at the global, regional, and national scale over the period of 1990 to 2015. METHODS: We estimated...... incidence and prevalence by age, sex, cause, year, and geography with a wide range of updated and standardised analytical procedures. Improvements from GBD 2013 included the addition of new data sources, updates to literature reviews for 85 causes, and the identification and inclusion of additional studies...... causes of years lived with disability (YLDs) on a global basis. NCDs accounted for 18 of the leading 20 causes of age-standardised YLDs on a global scale. Where rates were decreasing, the rate of decrease for YLDs was slower than that of years of life lost (YLLs) for nearly every cause included in our...
Same, Anne; Lee, Elinda Ai Lim; McNamara, Beverley; Rosenwax, Lorna
Little is known about the significance of gardening services for frail elderly people. This study explored the value of a gardening service for frail older people and people with a disability living in the community. Using qualitative and quantitative data collected from pre-gardening ( n = 38) and post-gardening service delivery interviews ( n = 35) and the Housing Enabler, the value of a gardening service was examined. Findings suggest that the service had a positive impact on the independence and emotional well-being of frail aged people and younger people with a functional disability, with little impact on physical health. Results indicate that gardening services should be fundamental to planning for these populations to remain or return to living in the community.
Werner, Shirli; Shulman, Cory
Studies have shown that stigmatization is linked to lower quality of life; however, only scant research has examined the association between family caregivers' internalization of stigma (affiliate stigma) and their subjective quality of life (subjective well-being, SWB). Furthermore, studies have rarely examined this association via comparison between caregivers of individuals with different developmental disabilities in addition to examining the influence of psychosocial protective factors. These were the aims of the current study. Family caregivers (N=176) of individuals with autism spectrum disorders (ASD), intellectual disabilities (ID), and physical disabilities (PD) completed a self-report structured questionnaire including scales measuring SWB, affiliate stigma, burden, positive meaning in caregiving, social support and self-esteem. Results showed that SWB of family caregivers was below the average normative level and especially low for caregivers of individuals with ASD. The strongest predictors of SWB were caregivers' self-esteem, social support, positive meaning in caregiving, and affiliate stigma. Furthermore, an interaction was found between affiliate stigma and diagnosis, showing that among caregivers of individuals with ASD, greater levels of stigma were associated with lower ratings of SWB, whereas such an association was not found among caregivers of individuals with ID or PD. Findings from this study point to the importance of supporting caregivers across the life-span in order to decrease stigma, improve social support and self-esteem and improve SWB. Further, findings point to the need to respond differentially to the various developmental disabilities. Copyright © 2013 Elsevier Ltd. All rights reserved.
Kato, Hidekazu; Miyake, Fuyu; Shimbo, Hiroko; Ohya, Makoto; Sugawara, Hidenori; Aida, Noriko; Anzai, Rie; Takagi, Mariko; Okuda, Mitsuko; Takano, Kyoko; Wada, Takahito; Iai, Mizue; Yamashita, Sumimasa; Osaka, Hitoshi
Creatine transporter deficiency (CTD) is an example of X-linked intellectual disability syndromes, caused by mutations in SLC6A8 on Xq28. Although this is the second most frequent genetic cause of intellectual disabilities in Europe or America after Fragile X syndrome, information on the morbidity of this disease is limited in Japan. Using the HPLC screening method we have established recently, we examined samples of urine of 105 patients (73 males and 32 females) with developmental disabilities at our medical center. And we have found a family with three ID boys with a novel missense mutation in SLC6A8. This is the second report of a Japanese family case of CTD. A systematic diagnostic system of this syndrome should be established in Japan to enable us to estimate its frequency and treatment. Copyright © 2013 The Japanese Society of Child Neurology. Published by Elsevier B.V. All rights reserved.
Ebrahimzadeh, Mohammad H; Moradi, Ali; Bozorgnia, Shahram; Hallaj-Moghaddam, Mohammad
Long-term consequences and the activities of daily living of bilateral lower limb amputation are not well documented. The aims of our study were to identify the long-term effects of bilateral lower extremity amputations on daily activities and understand how these amputees cope with their mobility assistive devices. Cross-sectional study. A total of 291 veterans with war bilateral lower limb amputations accepted to participate in a cross-sectional study. The average of follow-up was 25.4 years. A total of 152 amputees (54%) were involved in sports averagely 6.7 h per week. Bilateral amputees walk 10 m by the average of 15 ± 33 s, and they could walk continuously with their prosthesis 315 ± 295 m. They wore their prosthesis 6.8 ± 1.7 days per week and 7.9 ± 8.1 h per day. Of these, 6.7% of bilateral lower limb amputees needed help to wear their prosthesis; 88.3% of amputees used assistant device for walking. According to this survey, 73 (42%) prostheses in right limb were appropriate, 95 (54.6%) needed to be replaced, and 6 (3.4) needed to be fixed. On the left side, it was 76 (42%), 92 (52.0%), and 9 (5.1%), respectively. A total of 203 (74.9%) amputees reported limitations in at least one domain of the activities of daily living. The most common single item that affected the patients was ascending and descending stairs by the score of 66% of normal population. Veterans with bilateral lower limb amputations suffering from vast categories of daily problems. This study and its results confirm that bilateral lower limb amputees have major progressive disabilities in daily activities and their social performance. This should attract the attention of amputees' administrative organizations, social workers, health-care providers and caregiver providers. © The International Society for Prosthetics and Orthotics 2014.