Sheryl A. Larson

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.

The State of the Science of Health and Wellness for Adults With Intellectual and Developmental Disabilities

Historically, people with intellectual and developmental disabilities (IDD) have experienced health disparities related to several factors including: a lack of access to high quality medical care, inadequate preparation of health care providers to meet their needs, the social determinants of health (e.g., poverty, race and gender), and the failure to include people with IDD in public health efforts and other prevention activities. Over the past decade, a greater effort has been made to both identify and begin to address myriad health disparities experienced by people with IDD through a variety of activities including programs that address health lifestyles and greater attention to the training of health care providers. Gaps in the literature include the lack of intervention trials, replications of successful approaches, and data that allow for better comparisons between people with IDD and without IDD living in the same communities. Implications for future research needed to reduce health disparities for people with IDD include: better monitoring and treatment for chronic conditions common in the general population that are also experienced by people with IDD, an enhanced understanding of how to promote health among those in the IDD population who are aging, addressing the health needs of people with IDD who are not part of the disability service system, developing a better understanding of how to include people with IDD in health and wellness programs, and improving methods for addressing the health care needs of members of this group in an efficient and cost-effective manner, either through better access to general medical care or specialized programs.

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.

Choice of living arrangements

BACKGROUND The rights to choose where and with whom to live are widely endorsed but commonly denied to adults with intellectual disabilities (ID). The current study provides a contemporary benchmark on the degree of choice exercised by adult service users in the USA. METHOD Data came from the National Core Indicators programme. Participants were 6778 adult service users living in non-family-home service settings in 26 US states. RESULTS Most adults with ID did not participate in choosing where and with whom to live. Those with more support needs because of more severe ID and/or co-occurring conditions experienced less choice regarding living arrangements. Individuals living in their own home or an agency-operated apartment were more likely to choose where and with whom to live than individuals in nursing homes, institutions or group homes. However, few individuals with severe or profound ID chose where and with whom to live regardless of where they lived. CONCLUSIONS In 2008, despite community-living policies that emphasise choice, many adult service users with ID in the USA experienced little or no choice about where and with whom to live, especially those individuals with more severe ID. Our findings provide a clear endorsement of policies promoting more individualised living settings, such as ones own home or an agency apartment, because these settings do provide substantially more choice about living arrangements.

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.