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People aging with severe disabilities face many age- and disability-related challenges that are shared with a range of family members and other caregivers. Although these challenges are often exacerbated by substantial physical, cognitive, communication, health, and other impairments associated with severe disabilities, thematically, they are often similar to the challenges faced by other older persons as they navigate the aging process. These themes include (a) planning for a desired post--working years lifestyle, (b) identifying and securing services and supports that accommodate disability, (c) sustaining the support of family and friends, (d) maintaining optimal health, (e) dealing with grief and end-of-life issues, and (f) avoiding loneliness and isolation. Using these themes, this final article reviews the findings of the articles in this special issue as well as other related studies to suggest potentially fruitful directions in future research to contribute to the well-being of the rapidly growing population of persons aging with severe disabilities.

This article examines everyday choices made by 8,892 adults with intellectual and developmental disabilities (IDD) and support-related choices made by 6,179 adults with IDD receiving services from 19 state developmental disabilities program agencies that participated in the 2008-2009 National Core Indicators Project. Controlling for physical and sensory impairment, age, behavioral support, communication, and state, people in residential settings with 16 or more people had less everyday choice than those in other living arrangements. People with mild and moderate IDD had more control over everyday choices when living in their own homes, whereas people with severe and profound IDD had more control when living in agency homes of 3 or fewer residents. For people of all levels of IDD, institutional settings of 16 or more residents offered the lowest levels of everyday choice. Controlling for the same covariates, individuals with all levels of IDD living in their own homes had significantly more support-related choices than those in any other residential arrangement. Controlling for individual and residential setting characteristics, the state in which sample members lived was notably predictive of support-related choice. Overall, the tested variables accounted for 44% of the variability in everyday choice and 31% in support-related choice.

This study describes service users with Down syndrome (N = 1,199) and a comparative sample with intellectual and developmental disabilities but not Down syndrome (N = 11,182), drawn from National Core Indicator surveys of adult service users in 25 U.S. states. Individuals with Down syndrome were younger than were individuals without Down syndrome. Men with Down syndrome were older than women with Down syndrome, whereas the reverse was true of the individuals without Down syndrome. Most (68%) people with Down syndrome had mild or moderate intellectual disability. The prevalence of vision impairment, hearing impairment, and physical disability increased with age. Adults with Down syndrome were more likely to have Alzheimer's dementia, have a hearing impairment, or be overweight, but they were less likely to have a physical disability than those without Down syndrome. Adults with Down syndrome were less likely to live in institutions or their own home, but they more likely to live in a family member's home. The results of a logistic regression showed that participants were more likely to be reported to be overweight if they had Down syndrome, were female, and were physically inactive, but they were less likely to be reported to be overweight if they were older, had more severe intellectual disability, had cerebral palsy, or were not independently mobile.

The authors compare the prevalence of obesity for National Core Indicators (NCI) survey participants with intellectual disability and the general U.S. adult population. In general, adults with intellectual disability did not differ from the general population in prevalence of obesity. For obesity and overweight combined, prevalence was lower for males with intellectual disability than for the general population but similar for women. There was higher prevalence of obesity among women with intellectual disability, individuals with Down syndrome, and people with milder intellectual disability. Obesity prevalence differed by living arrangement, with institutional residents having the lowest prevalence and people living in their own home the highest. When level of intellectual disability was taken into account, these differences were reduced, but some remained significant, especially for individuals with milder disability.

Self-reported satisfaction and sense of well-being were assessed in a sample of 1,885 adults with intellectual and developmental disabilities receiving Medicaid Home and Community Based Services (HCBS) and Intermediate Care Facility (ICF/MR) services in 6 states. Questions dealt with such topics as loneliness, feeling afraid at home and in one's neighborhood, feeling happy, feeling that staff are nice and polite, and liking one's home and work/day program. Loneliness was the most widespread problem, and there were also small percentages of people who reported negative views in other areas. Few differences were evident by HCBS and ICF/MR status. The findings document consistent benefits of residential support provided in very small settings--with choices of where and with whom to live--and to individuals living with family.

Choice in everyday decisions and in support-related decisions was addressed among 2,398 adults with intellectual and developmental disabilities receiving Medicaid Home and Community Based Services (HCBS) and Intermediate Care Facility (ICF/MR) services and living in nonfamily settings in six states. Everyday choice in daily life and in support-related choice was considerably higher on average for HCBS than for ICF/MR recipients, but after controlling for level of intellectual disability, medical care needs, mobility, behavioral and psychiatric conditions, and self-reporting, we found that choice was more strongly associated with living in a congregate setting than whether that setting was HCBS- or ICF/MR-financed. Marked differences in choice were also evident between states.

This article examines expenditures for a random sample of 1,421 adult Home and Community Based Services (HCBS) and Intermediate Care Facility/Mental Retardation (ICF/MR) recipients in 4 states. The article documents variations in expenditures for individuals with different characteristics and service needs and, controlling for individual characteristics, by residential setting type, Medicaid program (ICF/MR or HCBS), and state. Annual average per-person Medicaid expenditures for HCBS recipients were less than those of ICF/MR residents ($61,770 and $128,275, respectively). HCBS recipients had less severe disability (intellectual, physical, health service needs) than ICF/MR residents. Controlling these differences, and for congregate settings, HCBS were less costly than ICFs/MR, but this distinction accounted for only 3.3% of variation in expenditures. Persons living with families receiving HCBS ($25,072) and in host families (including foster, companion, or shared living arrangements; $44,112) had the lowest Medicaid expenditures.

Adults with ID/DD live in increasingly small community settings, where the risk of loneliness may be greater. We examined self-reported loneliness among 1,002 individuals with ID/DD from 5 states in relation to community residence size, personal characteristics, social contact, and social climate. One third reported being lonely sometimes and one sixth said they were often lonely, but loneliness was not more common for people living alone or in very small settings. More loneliness was reported by residents of larger community living settings of 7 to 15 people. More social contact and liking where one lives were associated with less loneliness. Social climate variables, such as being afraid at home or in one's local community, were strongly associated with greater loneliness.

This article reviews the current and changing status of residential supports for persons with intellectual and developmental disabilities (ID/DD). It examines four major trends in those supports: (1) Decreasing use of larger institutions and increasing use of community housing; (2) Decreasing size among community settings; (3) Increasing numbers of people living in homes that they themselves own or rent; and (4) Decreasing out-of-home placements of children and youth. Within each trend the article provides a statistical description of the trend, its foundation in public policy, reviews the evidence of the trend's benefit to people with ID/DD, and identifies future challenges in sustaining the trend. (Contains 4 figures.)

We examined the frequency and stability of family contact with long-term institutional residents during a major deinstitutionalization project. Movers relocated to community accommodation between Assessments 1 (baseline) and 2. Stayers remained institutionalized. We investigated family contact longitudinally over four annual assessments. There was no significant between-group difference in frequency of family contact at baseline, but, subsequently, movers had more frequent family contact than did stayers. There was a significant decline over time in the proportion of stayers with family contact and a significant increase in movers with family contact, with a marked resumption of contact by movers during the first year of community living. Carefully supporting family (re)involvement during the relocation process may be associated with stable, long-term family contact.

Data from the Center for Outcome Analysis were subjected to independent secondary analysis involving comparisons by ethnic group of eight indicators of service quality for users of adult developmental disability services in four states. Ethnic group membership had very limited or no association with the consumer outcomes and service inputs evaluated. Where significant ethnic group differences were found, they were small, and there was no consistent pattern of a particular ethnic group doing better. These findings may relate to the substantial influence of developmental disability services in the lives of service recipients and to the effect of disability itself, in that adaptive behavior was strongly related to most consumer outcomes.

In the United States, data on the number of people with intellectual or developmental disabilities (ID/DD) living in institutional and other congregate care settings have been gathered and reported since 1977 through the Residential Information Systems Program (RISP) at the University of Minnesota (e.g., Prouty & Lakin, 1997). These data were originally gathered through surveys of licensed residential settings (until 1982) and more recently through surveys of state and sub-state administrative agencies responsible for residential services. This paper combines data from the RISP project (covering people with ID/DD living in the US residential service system) with data from the NHIS-D (covering people with ID/DD in the non-institutionalised US population) to estimate the distribution of the US population with ID/DD living in each of several types of residential settings. Based on the NHIS definition of institutions, it was assumed for the purposes of this paper that people living in congregate settings with 4 or more others were not represented in the NHIS-D. People in congregate settings were identified using the RISP reports. (Contains 1 table and 1 figure.)

Although frontline supervisors are responsible for on-site management, supervision, and training of direct support professionals, research on the nature, content, and skills of the frontline supervisor role is rare. In this paper we describe results of 12 job analysis and three validation focus groups constituted to describe core competencies for supervisors in organizations providing community supports for people with disabilities. The focus groups involved 146 participants, including 97 direct support professionals, 40 frontline supervisors, and 7 managers who supervise frontline supervisors. The focus groups identified 14 competency areas in which frontline supervisors need to be proficient. In each competency area, between 4 and 26 specific competency statements were identified (a total of 142) along with 340 performance indicators.

This article presents tables showing statistics on selected indicators of change between June 30, 1990, and June 30, 2000, in the areas of residential services (large public residential facilities populations, all residential service recipients, and persons in settings of 6 or fewer), Medicaid long-term care program participation, and service expenditures. (CR)

This article reports that in 2001, for the first time since its creation 20 years earlier, Medicaid Home and Community-Based Services (HCBS) Waiver programs for persons with intellectual and developmental disabilities had Federal and state expenditures that exceeded those for Medicaid Intermediate Care Facilities for Persons with Mental Retardation. (CR)

Adaptive and challenging behavior changes associated with movement from Minnesota's state institutions to community homes were examined in 148 participants with mental retardation. Adaptive behavior declined among residents who moved to community programs but was unchanged for persons who moved to Home and Community Based Services Waiver-Funded residences. (Contains references.) (Author/CR)

This introductory article discusses major Australian deinstitutionalization initiatives and presents data on trends in institutional living in Australia, the United States, and the United Kingdom. All three countries continue to witness a fall in the institutional population of people with intellectual disability and an increase in community accommodation provision. (Contains references.) (CR)

The quality, number, and content of residential Individualized Habilitation Plans (IHP) objectives were evaluated for 155 adult institution and community residents. Over 90 percent of objectives were functional and age appropriate. Community residents had significantly more IHP objectives and also had objectives from a wider variety of content areas. (Contains references.) (Author/CR)

This longitudinal study examined the effectiveness of intervention for behavioral objectives in Individualized Habilitation Plans of 130 adults with mental retardation in residential settings. Little evidence of effective intervention was found using three indicators: discontinuation of the behavior objective, change in challenging behavior, and frequency of one-on-one crisis intervention. (Contains references.) (Author/DB)

A study investigated the use of different interventions for 151 individuals with mental retardation in residential care: Individualized Habilitation Plan objectives concerning challenging behavior, one-to-one crisis intervention in the preceding 30 days, and behavior management professional services in the preceding 6 months. Externalized challenging behaviors were associated with all interventions. (Contains 16 references.) (Author/CR)

This study provides longitudinal analysis of day program and work activities of 61 individuals leaving Minnesota state institutions and a comparison group of 71 people remaining institutionalized. Only 13% of movers experienced integrated employment. As a group, the people who remained institutionalized actually earned more money. (Author/CR)

Describes the successful outcomes of a behavioral support and crisis-response demonstration project in Minnesota that was designed to prevent the institutionalization of individuals with developmental disabilities who displayed behavior problems. Results indicate the outreach support kept individuals out of institutions and did so cost effectively. (CR)

An examination of expenditures, staffing, and outcomes for 116 adults with severe mental retardation who moved from state institutions in Minnesota to community living settings and a comparison group of 71 persons who remained institutionalized, found community residences were less costly, had more favorable staffing, and better outcomes. (Author/CR)