This article describes the use of the National Health Interview Survey-Disability Supplement (NHIS-D) to estimate the prevalence and general characteristics of persons with intellectual and/or developmental disabilities in the non-institutionalized U.S. population. It provides estimates of the populations of non-institutionalized persons with intellectual disability (defined categorically), with developmental disabilities (defined functionally) and with both. It describes how the prevalence of intellectual and/or developmental disabilities varies by age, poverty status and other demographic variables. It describes how intellectual disabilities and developmental disabilities are operationally different, and how the people identified in those groups differ substantially both in number and in demographic characteristics. An analysis of poverty status among adults reveals that poverty is significantly more common for women, people who were not white, people with intellectual or developmental disabilities, adults with less than 12 years of education, and people living with a spouse or alone (as compared to people living with relatives such as parents or siblings).
People with developmental disabilities have persistent levels of low employment and employment rates among the working-aged disabled are declining (see Bound & Waidmann…
People with developmental disabilities have persistent levels of low employment and employment rates among the working-aged disabled are declining (see Bound & Waidmann, 2002). For example, the average employment rate of those graduating with a four-year degree is just under 90% while employment rates for those graduates with a disability hover around 50% (The Center for an Accessible Society, n.d.). Subsequently, people with disabilities often have a difficult time becoming economically self-sufficient (see National Council on Disability, 2000; Sowers, McLean, & Owens, 2002). The Americans with Disability Act (ADA) is one notable attempt to help provide those with a disability to employment access. While the ADA has been a champion of the cause, people with developmental disabilities still face a host of employment-related barriers (e.g., biases associated with the disability) (see DiLeo, 2007; Luecking & Mooney, 2002). Furthermore, while most people have concerns over retirement (e.g., social isolation) those concerns are exacerbated for people with developmental disabilities (see Hodges & Luken, 2006).
The transition from school to work or to post-secondary training is a critical period for all students (Gilmore, Bose, & Hart, 2001; Zaft, Hart, & Zimbrich, 2004). Thus, a challenge for educators is to develop educational programs and services that embrace the characteristics that is prevalent in highly successful adults with and without disabilities. For years, adolescents and adults with development disabilities did not receive much attention from general or special educators. Fortunately, special educators now are reorganizing the complex needs of these older individuals and are making progress in designing interventions to meet their diverse needs. However, they alone cannot ensure the success of these students in secondary and post-secondary situations (see Hart, Mele-McCarthy, Pasternack, Zimbrich, & Parker, 2004). Legislators and policymakers must consider the special needs of this population in reforming secondary education; and general and special educators must share the responsibility of preparing them for graduation and post-secondary planning (see Bailey, Hughes, & Karp, 2004). In addition, community services must join forces with educators and employers to provide individuals with developmental disabilities with a continuum of services throughout their life span. Many students with developmental disabilities find themselves unprepared at college entry in a number of areas including inadequate knowledge of subject content, underachieving in academic skills, poor organizational skills (e.g., time management and study skills), poor test taking skills, lack of assertiveness, and low self-esteem (Dalke & Schmitt, 1987; Mull, Sitlington, & Alper, 2001; Stodden & Whelley, 2004).
Research on women’s health has increased substantially in the past decade, but this has not been paralleled in the area of developmental disabilities. In developmental…
Research on women’s health has increased substantially in the past decade, but this has not been paralleled in the area of developmental disabilities. In developmental disabilities research, there has been little attempt to disentangle the impact of age, intellectual disabilities, and other developmental disabilities on women’s health. The 1994–1995 Disability Supplement to the National Health Interview Survey, administered to a representative sample of the U.S. population, was used to describe the aging process in the community for women age 30 and older with mental retardation (MR), developmental disabilities (DD) or both (MR/DD). Definitions of MR and DD consistent with professional and legal standards were developed and adapted to the NHIS-D questions. Approximately 77 million civilian, non-institutionalized women in the United States were age 30 and older at the time of the survey. Among these women an estimated 0.56% have mental retardation or developmental disability. Compared with women in general, women with these disabilities were disproportionately absent in the community, had negative perceptions of their health status, and their health indicators tended to support these perceptions. Most women with these disabilities were independent in activities of daily living (ADL), but instrumental activities of daily living (IADLs) posed more of a challenge, and limitations in major activities were common. Limitations in mobility were common among women with DD.
This paper examines how developmental risk factors associated with depression in typically developing adolescents may interact with the particular life experience of…
This paper examines how developmental risk factors associated with depression in typically developing adolescents may interact with the particular life experience of adolescents with intellectual disabilities and influence vulnerability to depression. We suggest that a consideration of developmental factors and their interaction with the person's social environment may offer a possible framework for prevention and early intervention with adolescents with intellectual disabilities.
The debate as to whether intellectual disability (ID) should be conceptualized as a health condition or as a disability has intensified as the revision of World Health…
The debate as to whether intellectual disability (ID) should be conceptualized as a health condition or as a disability has intensified as the revision of World Health Organization’s (WHO’s) International Classification of Diseases (ICD) is being finalized. Defining ID as a health condition is central to retaining it in ICD, with significant implications for health policy and access to health services. The purpose of this paper is to include some reflections on the consensus document produced by the first WHO Working Group on the Classification of MR (WHO WG-MR) and on the process that was followed to realize it. The consensus report was the basis for the development of official recommendations sent to the WHO Advisory Group for ICD-11.
A mixed qualitative approach was followed in a series of meetings leading to the final consensus report submitted to the WHO Advisory group. These recommendations combined prior expert knowledge with available evidence; a nominal approach was followed throughout with face-to-face conferences.
The WG recommended a synonym set (“synset”) ontological approach to the conceptualisation of this health condition underlying a clinical rationale for its diagnosis. It proposed replacing MR with Intellectual Developmental Disorders (IDD) in ICD-11, defined as “a group of developmental conditions characterized by a significant impairment of cognitive functions, which are associated with limitations of learning, adaptive behaviour and skills”. The WG further advised that IDD be included under the parent category of neurodevelopmental disorders, that current distinctions (mild, moderate, severe and profound) be continued as severity qualifiers, and that problem behaviours removed from its core classification structure and instead described as associated features.
Within the ID/IDD synset two different names combine distinct aspects under a single construct that describes its clinical as well as social, educational and policy utilities. The single construct incorporates IDD as a clinical meta-syndrome, and ID as its functioning and disability counterpart. IDD and ID are not synonymous or mirror concepts as they have different scientific, social and policy applications. New diagnostic criteria for IDD should be based on a developmental approach, which accounts for the complex causal factors known to impact the acquisition of specific cognitive abilities and adaptive behaviours. The paper focuses on a new clinical framework for the diagnosis of IDD that also includes and complements the existing social, educational and policy components inherent in ID.
In this chapter, my aim is to describe and analyse conceptually and provide direction for the identification, selection and use of assistive technologies (ATs) to support…
In this chapter, my aim is to describe and analyse conceptually and provide direction for the identification, selection and use of assistive technologies (ATs) to support the education and development of young children with disabilities. The chapter discusses the quality of early intervention practices and the pragmatic role of ATs in delivering effective early intervention impacts. In making this case, the chapter draws upon Vygotsky's cultural-historical theory to illuminate how ATs can be selected and used effectively in schools to enable all young children to thrive in their learning and development in inclusive classrooms.
The life expectancy for persons with intellectual disabilities (ID) has increased significantly, resulting in an increasing number of aging persons with ID. To promote…
The life expectancy for persons with intellectual disabilities (ID) has increased significantly, resulting in an increasing number of aging persons with ID. To promote healthy and active aging of persons with ID, discussions on new initiatives to design age-friendly communities have begun at local and international levels. The purpose of this paper, a qualitative research study, is to identify features of an age-friendly community, and facilitators and barriers from the perspectives of older adults with mild ID and their caregivers who live in the city of Winnipeg in Canada.
Seven older persons with mild ID were interviewed, and 15 caregivers participated in focus group discussions. All participants were asked questions about features of community living and their experiences in eight broad topic areas (i.e. transportation, housing, social participation, respect and social inclusion, opportunities for community involvement, communication and information, community support and healthcare services, and outdoor spaces and buildings).
The results indicated that many of the current features of the city of Winnipeg do not adequately address the needs of aging persons with ID; specifically, participants revealed that issues related to accessibility, social participation, social disrespect and inclusion, and lack of resources were important barriers to independence.
The findings will increase awareness of the needs of aging persons with ID and inform programme planning, service delivery, coordination of community-based services and policies to support healthy and active aging for this vulnerable population.
The area of behavioural phenotype research and related clinical practice is now recognised as one of high relevance to all practitioners who help people with learning…
The area of behavioural phenotype research and related clinical practice is now recognised as one of high relevance to all practitioners who help people with learning disabilities, whatever their age. Knowledge continues to accumulate rapidly regarding aspects pertaining to aetiology, likely developmental, emotional and behavioural challenges, useful multidisciplinary interventions and supports and long‐term prognosis. This paper reviews the concept, its history and recent developments, focusing on those aspects which are of particular importance to clinical and other care and support professionals and their clients. There is a continuing need for widespread dissemination of the large body of relevant information, and its application to practice in order to maximise benefits for people with learning disabilities and their families.
Purpose – The goal of this chapter was to empirically describe the patterns and dimensions of community interaction of typically underserved families of children with…
Purpose – The goal of this chapter was to empirically describe the patterns and dimensions of community interaction of typically underserved families of children with autism and other developmental disabilities within a family quality of life (FQoL) context.
Methodology – We utilized the theoretical framework of FQoL to examine the community interactions of 149 families who voluntarily participated in this study. The Family Quality of Life Survey (FQoLS-2006) was used to collect data from the primary caregivers of the children with the disability, 92% of which were mothers. We conducted an in-depth examination of the six dimensions (importance, opportunities, initiative, attainment, stability, and satisfaction) of community interaction.
Findings – Most families viewed community interaction as very important to their FQoL and the majority (62%) were satisfied with their community interaction, although just over a third reported high attainment, and only 48% reported having adequate opportunities for community interaction. Families of children with autism reported lower attainment of community interaction when compared to families of children with other developmental disabilities (t=2.63, df=147, p=0.01). Some race-related and child-related differences were also observed in the initiative taken to pursue community interaction and discrimination experienced by families.
Limitations – Results must be interpreted with caution, as the participants in this study were all volunteers and the majority were mothers, and therefore may not be representative of all families of children with disabilities. Despite the limitations, findings from this study are a first step in understanding the multidimensional nature of community interaction of low-income, minority families.