K. Charlie Lakin

Prevalence of mental retardation and developmental disabilities: estimates from the 1994/1995 national health interview survey disability supplements.

In 1994 and 1995, the National Health Interview Survey included a Disability Supplement (NHIS-D) to collect extensive information about disabilities among individuals sampled as part of annual census-based household interview surveys. Here we describe the development and application of operational definitions of mental retardation and developmental disabilities to items in the NHIS-D to estimate prevalence. In our analyses, we estimate the prevalence of mental retardation in the noninstitutionalized population of the United States to be 7.8 people per thousand (.78%); of developmental disabilities, 11.3 people per thousand (1.13%); and the combined prevalence of mental retardation and/or developmental disabilities to be 14.9 per thousand (1.49%). Differences in prevalence estimates for mental retardation and developmental disabilities and among people of various ages are explored.

Behavioural outcomes of deinstitutionalisation for people with intellectual disability: A review of US studies conducted between 1980 and 1999

Ten years ago, we published a summary of all US studies published between 1976 and 1988, inclusive, that measured behavioural outcomes associated with the movement of people with mental retardation from public institutions to community residential settings. Those studies found with remarkable consistency that positive adaptive behaviour changes were associated with people moving from institutions to community homes. Now, we revisit this topic to examine whether research conducted since 1988 has continued to support these earlier findings. In this review of literature, 33 of 250 US studies of residential service outcomes met our inclusion criteria of scope, quality, timeliness and design (longitudinal or contrast group study). As in our earlier review, almost all of the reviewed studies found statistically significant increases in overall adaptive behaviour scores associated with deinstitutionalisation. Three studies published since 1990 reported statistically significant improvements in challenging behaviour associated with movement to the community, and nine reported no significant differences in challenging behaviour for persons who moved compared with persons who remained in institutions.

Deinstitutionalization of Persons with Mental Retardation: Behavioral Outcomes:

This article examines experimental/contrast group and longitudinal studies of the changes in adaptive behavior associated with moving from state institutions to small (15 or fewer people) community living arrangements for persons with mental retardation. It reviews 15 research reports, including 18 separate studies with 1358 subjects that met specific criterion for design and recency. It summarizes outcomes in the areas of overall adaptive behavior, seven specific domains of adaptive behavior, and overall problem behavior. All eight of the experimental/contrast group studies, and 5 of the 10 longitudinal studies reported statistically significant improvement in either overall adaptive behavior or in the basic self-help/domestic domain associated with movement to the community. All 18 studies reported at least some improvement for groups moving from institutions to community living arrangements.

Overweight and Obesity Among Adults With Intellectual Disabilities Who Use Intellectual Disability/Developmental Disability Services in 20 U.S. States

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.

Loneliness and Living Arrangements

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 ones local community, were strongly associated with greater loneliness.

Longitudinal Study of Recruitment and Retention in Small Community Homes Supporting Persons With Developmental Disabilities

Variables associated with turnover in 110 small Minnesota group homes supporting people with developmental disabilities between December 1993 and December 1996 were examined. Common staffing problems included recruiting qualified workers (reported by 57% of supervisors) and staff turnover (44%). Turnover for direct support professionals was 46%. Of workers who left, 45% left within 6 months of hire, and another 23%, between 6 and 12 months. A multiple regression analysis (with 11 variables) accounted for 34% of the variability in facility turnover rates. Variables contributing significantly to the prediction of higher turnover included greater support needs of residents, lower starting pay, less tenured supervisors, and fewer direct support professionals eligible for paid leave. Implications for practice, research, and policy were discussed.

State Institutions: Thirty Years of Depopulation and Closure

Over the past 30 years, a number of social, political, and economic forces have influenced public policy decisions regarding residential services for persons with mental retardation and other developmental disabilities (MR/DD). One of the most striking outcomes of these forces has been a steady decrease of persons with MR/DD residing in state institutions. In this paper we show the changes over the past 30 years in state institutional populations, interstate variability, movement of individuals into and out of state institutions, costs of state institutional care, and state institution closures as a result of social policy.

Parent Attitudes about Residential Placement before and after Deinstitutionalization: A Research Synthesis.

This paper reviews 27 studies of parental attitudes on the deinstitutionalization of a family member. In 12 of the studies, the family member was institutionalized. Those studies showed overwhelming satisfaction with the institutional placement and general opposition to deinstitutionalization. In seven studies, the family member had already moved from an institution to the community. Those parents retrospectively reported lower levels of satisfaction with the earlier institutional placement, lower levels of opposition to deinstitutionalization, and high levels of satisfaction with community settings. The three studies in which parental attitudes were sampled both before and after deinstitutionalization mirrored the other studies, showing high levels of general satisfaction with institutional placements before deinstitutionalization and high levels of satisfaction with community placements after deinstitutionalization. Also summarized are parental concerns about deinstitutionalization, their continuing concerns about their childrens community placement, their perceptions of the positive outcomes of community living, and ways to facilitate parental satisfaction with deinstitutionalization.

Role and Essential Competencies of the Frontline Supervisors of Direct Support Professionals in Community Services

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.

Demographic Characteristics, Health Conditions, and Residential Service Use in Adults with Down Syndrome in 25 U.S. States

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 Alzheimers 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 members 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.