Housing and Long-Term Services and Supports for People With Intellectual or Developmental Disabilities From Racially and Culturally Minoritized Communities.

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.

Identifying People With Intellectual and Developmental Disabilities in National Population Surveys.

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.

A Systematic Review of U.S. Studies on the Prevalence of Intellectual or Developmental Disabilities Since 2000.

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.

Active Support Training, Staff Assistance, and Engagement of Individuals With Intellectual and Developmental Disabilities in the United States: Randomized Controlled Trial.

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.

Responsiveness to Self-Report Interview Questions by Adults With Intellectual and Developmental Disability.

An important line of research involves asking people with intellectual and developmental disability (IDD) to self-report their experiences and opinions. We analyzed the responsiveness of 11,391 adult users of IDD services to interview questions from Section 1 of the 2008-2009 National Core Indicators-Adult Consumer Survey (NCI-ACS). Proxy responses were not allowed for the selected questions. Overall, 62.1% of participants answered the questions and were rated by interviewers as understanding the questions and as responding consistently. Most participants responded in an all-or-none fashion, answering either all or most questions or few to none. Individuals with milder levels of IDD and with speech as their primary means of expression were more likely to answer the questions and provide a scoreable response. Interviewer ratings of interviewees' answering questions, understanding of questions, and consistent responding were each related to responsiveness.

Correlates of everyday choice and support-related choice for 8,892 randomly sampled adults with intellectual and developmental disabilities in 19 states.

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.

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 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.

A survey of thyroid gland scintigraphy.

UNLABELLED: The Society of Nuclear Medicine (SNM) published procedure guidelines for thyroid imaging in 1999. We wished to determine how many clinics performing thyroid imaging follow the guidelines and to what extent. Of particular interest to us was the choice of collimator. METHODS: We developed a 10-question survey to obtain information on how hospitals perform thyroid imaging. The questions were designed to cover the procedure recommendations of the SNM guidelines. The survey was sent to 350 hospitals randomly selected from 11 states in the northeastern United States. RESULTS: One hundred sixty-five surveys (47%) were returned. Most of the clinics that responded obtain a history, hyperextend the neck, and obtain anterior and anterior oblique views. Twenty-five percent of the respondents obtain all their images with a parallel-hole collimator. Seventy-five percent use a pinhole collimator or a combination of parallel-hole and pinhole collimators. The number of counts and time used for acquiring the images vary greatly. Less than half the respondents palpate the neck for correlation with the scan. CONCLUSION: The survey results indicated that many clinics do not follow the recommendations of the SNM guidelines. The major deviations from the guidelines were in the choice of collimator, the number of counts or amount of time used to acquire images, and the lack of neck palpation for correlation with the scan.

Multiperspective analysis of workforce challenges and their effects on consumer and family quality of life.

The impacts of direct support professional turnover, wages, and vacancy rates as reported in interviews with 372 adult service recipients and 20 county managers and surveys of 183 families, 520 service coordinators, 228 direct support professionals, and 184 residential and 82 vocational managers were examined. Direct support professional turnover, wages, and vacancy rates were reported to be barriers to high quality supports, serving people waiting for services, and providing in-home or respite services. Higher direct support professional turnover was associated with lower wages and supports in urban counties. Multivariate analyses of covariance revealed a complex pattern of significant associations between quality of life outcomes; level of mental retardation, medical status, site size (for vocational settings); and direct support professional vacancy rates, average wage, and turnover rates.

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.

Longitudinal study on the adaptive and challenging behaviors of deinstitutionalized adults with mental retardation.

Adaptive and challenging behavior changes associated with movement from Minnesota's state institutions to community homes were examined. Most of the 148 participants who moved had severe or profound mental retardation, significant challenging behavior, and several decades of institutionalization. Adaptive and challenging behavior were assessed in the institution and thereafter annually in the community. Relative to institutional levels, adaptive behavior declined among residents who moved to community ICFs/MR but was unchanged for the HCBS Waiver group. Challenging behavior tended to worsen initially but, except for internalized behavior, no longer differed from institutional levels by the second community assessment. Change in challenging behavior was unrelated to community residence type. Previous papers involving these participants showed consistent lifestyle enhancements and reduced service costs relative to the institution.