Search

This systematic review examined 14 U.S. studies published since 2000 reporting prevalence estimates for intellectual disability (ID) or developmental disability (DD). Prevalence rates for children were between 11.0 and 13.4 per 1,000 for ID and between 45.8 and 69.9 per 1,000 for DD using data from 2010 or later. A 2015 Ohio study of adults yielded a prevalence estimate of 41.0 per 1,000 for DD. The only study of ID in adults and the only study incorporating DD Act definitions used the 1994/1995 NHIS-D yielding prevalence estimates for ID and/or DD of 38.2 per 1,000 for children birth to 5 years, 31.7 for children 6 to 18 years, and 7.9 per 1,000 for adults. Notable differences in prevalence estimates by age and operational definition have important implications for public policy and research. Serious surveillance gaps limit our understanding of service utilization rates, unmet needs, and health and other outcomes for adults with ID or DD.

Public health and policy planning for adults with intellectual and developmental disabilities (IDD) is imperiled by the lack of ongoing national surveillance data on prevalence and health status. In 2018, the Administration on Intellectual and Developmental Disabilities appointed a workgroup of representatives from key federal agencies and national experts to recommend strategies to improve prevalence estimates and health surveillance for people with IDD. This article presents the workgroup findings on the availability of prevalence and health surveillance data for adults with IDD and suggested items that could identify respondents with IDD on national surveys with special attention to modifications in the National Health Interview Survey. We identify core constructs that must be measured to identify sample members with IDD in population surveys, and additional constructs which, if measured, would support more comprehensive identification of sample members and enhance ongoing surveillance of the health status, outcomes, and unmet needs of this population. We conclude with a brief review of methodological considerations to improve IDD national surveillance including cultural and linguistic sensitivity and the inclusion of U.S. territories in national surveillance protocols.

Two non-U.S. quasi-experimental studies reported Active Support training was associated with increased engagement in individuals with IDD, but no randomized controlled trials (RCTs) exist. We evaluated effects of Active Support training on staff assistance, and social and nonsocial engagement in 75 individuals with intellectual and developmental disabilities (IDD) in U.S. group homes. We detected no significant effects of active support training. Individuals with more skills and less challenging behavior engaged more in nonsocial activities. Younger individuals with more skills living in homes with fewer staff changes were more socially engaged. Factors associated with nonsocial engagement mirrored those reported in Qian, Tichá, Larson, Stancliffe, & Wuorio, (2015). Staffing-related implementation challenges and statistical power limited our ability to detect differences.

This article describes research on the places people with intellectual and developmental disabilities (IDD) live and disparities in housing and long-term services and supports (LTSS) outcomes for people with IDD from racially and culturally minoritized groups. It also summarizes the conclusions and recommendations of the Housing and Long-Term Services and Supports strand of the 2022 State of the Science Conference on the Intersection of Diversity, Equity and Inclusion and Supports and Services for People with IDD, identifies limitations of the available research and recommends strategies to improve research, knowledge translation, and practices. [ABSTRACT FROM AUTHOR]

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.

Difficulties in finding, keeping, and ensuring the competence of the direct support workforce in community developmental disability services has long been a challenge for individuals, families, providers, and policy makers. Direct support staff recruitment, retention, and competence are widely reported as one of the most significant barriers to the sustainability, growth, and quality of community services for people with developmental disabilities (ANCOR [2001] State of the states report. Alexandria, VA: ANCOR; Colorado Department of Human Services, [2000] Response to Footnote 106 of the FY 2001 appropriations long bill: Capacity of the community services systems for persons with developmental disabilities in Colorado; Hewitt [2000] Dynamics of the workforce crisis. Presentation at the NASDDDS Fall meeting. Alexandria, VA). While long in existence, these challenges are ones of growing concern because the number of people demanding community services is increasing and the population of people from which to recruit workers is declining (Office of the Assistant Secretary for Planning and Evaluation [2006] The supply of direct support professionals serving individuals with intellectual disabilities and other developmental disabilities: Report to Congress. Washington, DC: Office of Disability, Aging and Long-Term Care Policy, ASPE, U.S. Department of Health and Human Services). As the service system moves towards consumer direction, managed care, and more noncategorical service delivery systems, the difficulties of providing for an adequate and well-prepared workforce to support people with developmental disabilities becomes more complex and multifaceted. The solutions to those challenges are also more complex. This article reviews the literature regarding the complexity of the direct support workforce crisis, the effects of this crisis on various stakeholder groups, promising practices designed to address the challenges, and the related practice and policy implications. (Contains 2 tables.)

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.

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)

Recruitment challenges and costs were identified by administrators from 129 agencies that provide residential, vocational, and other services to persons with developmental disabilities in Minnesota. Finding qualified applicants was the most difficult staffing problem reported. Incentives included competitive benefits, allowing time off without pay, and offering paid leave. (Contains references.) (Author/CR)

This national study of direct-care staff members working in 101 small community homes for people with mental retardation found an annual staff turnover rate of 57 percent and staff plans to remain in the care-provider position for an average of 5.4 years. Variables associated with both staff turnover rate and intended length of stay are identified. (Author/DB)

This paper reviews 27 studies of parental attitudes on the deinstitutionalization of a family member with disabilities. Studies of existing institutional placements found high levels of satisfaction and opposition to deinstitutionalization, whereas studies of community placements found high levels of satisfaction with community placements and retrospectively reported lower satisfaction with institutional placements. (Author/DB)

Movement of persons with mental retardation out of institutions and into community settings is occurring at an ever increasing pace (Amado, Lakin, & Menke, 1990). State and federal laws have [...]

The community adjustment of young adults with mental retardation remains a crucial issue for all human service providers. No longer does adjustment imply simply the physical integration of persons with [...]

The paper reviews experimental/contrast groups and longitudinal studies of changes in adaptive behavior associated with retarded persons moving from state institutions to small community living arrangements.The paper summarizes outcomes in overall behavior, 7 specific behavior domains, and problem behavior. All 18 studies reported at least some behavioral improvement. (DB)

Public health and policy planning for adults with intellectual and developmental disabilities (IDD) is imperiled by the lack of ongoing national surveillance data on prevalence and health status. In 2018, the Administration on Intellectual and Developmental Disabilities appointed a workgroup of representatives from key federal agencies and national experts to recommend strategies to improve prevalence estimates and health surveillance for people with IDD. This article presents the workgroup findings on the availability of prevalence and health surveillance data for adults with IDD and suggested items that could identify respondents with IDD on national surveys with special attention to modifications in the National Health Interview Survey. We identify core constructs that must be measured to identify sample members with IDD in population surveys, and additional constructs which, if measured, would support more comprehensive identification of sample members and enhance ongoing surveillance of the health status, outcomes, and unmet needs of this population. We conclude with a brief review of methodological considerations to improve IDD national surveillance including cultural and linguistic sensitivity and the inclusion of U.S. territories in national surveillance protocols. [ABSTRACT FROM AUTHOR]

Copyright of American Journal on Intellectual & Developmental Disabilities is the property of American Association on Intellectual & Developmental Disabilities and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)