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.

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.

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.

Place of residence and preventive health care for intellectual and developmental disabilities services recipients in 20 states.

OBJECTIVE: We identified trends in the receipt of preventive health care by adults with intellectual and developmental disabilities by type of residential setting. METHODS: We used data from the 2008-2009 collection round of the National Core Indicators (NCI) program. Participating states drew random samples of adults receiving developmental disabilities services. The study was observational, with both self-report and report by proxy. Once the random samples were drawn in each state, data were collected using the NCI Adult Consumer Survey. Trained interviewers administered the survey in person. RESULTS: The likelihood of a person receiving preventive care procedures was related to age, level of intellectual disability, mobility, health status, and state. Type of living arrangement also affected whether a person received these health services, even after controlling for state, level of disability, and other personal characteristics. In general, people living with parents or relatives were consistently the least likely to receive preventive health exams and procedures. CONCLUSION: With growing numbers of adults being served in the family home, educational and policy-based efforts to ensure access to preventive care are increasingly critical.

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.

Closing the quality gap: revisiting the state of the science (vol. 7: quality improvement measurement of outcomes for people with disabilities).

OBJECTIVE: To examine how health care outcomes for general medical care have been assessed for people with disabilities within the rubrics of care coordination and quality improvement. DATA SOURCES: MEDLINE®, PsychINFO, ERIC, and CIRRIE through March 27, 2012; hand searches of references from relevant literature and journals. A search of high-quality gray literature sources was also conducted. REVIEW METHODS: We included all forms of disability except severe and persistent mental illness for all age groups in outpatient and community settings. We focused on outcomes, patient experience, and care coordination process measures. We looked for generic outcome measures rather than disability-condition-specific measures. We also looked for examples of outcomes used in the context of disability as a complicating condition for a set of basic service needs relevant to the general population, and secondary conditions common to disability populations. Two independent reviewers screened all articles; disagreements were resolved through consensus. Included articles were abstracted to evidence tables and quality-checked by a second reviewer. Data synthesis was qualitative. RESULTS: A total of 15,513 articles were screened; 15 articles were included for general outcome measures and 44 studies for care coordination. A large number of outcome measures have been critically assessed and mapped to the International Classification of Functioning, Disability and Health. We found no eligible studies of basic medical needs or secondary conditions that examined mixed populations of disabled and nondisabled participants for disability as a complicating condition. Care coordination literature for people with disabilities is relatively new and focuses on initial implementation of interventions rather than assessing the quality of the implementation. CONCLUSIONS: We found very few direct examples of work conducted from the perspective of disability as a complicating condition. The sparse literature indicates the early stages of research development. Capturing the disability perspective will require collaboration and coordination of measurement efforts across medical interventions, rehabilitation, and social support provision.

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.

Individuals with Intellectual disabilities and augmentative and alternative communication: Analysis of survey data on uptake of aided AAC, and loneliness experiences.

This study describes uptake of augmentative and alternative communication systems by adults with intellectual disabilities; their ability to self-report at interview; differences in self-reported loneliness experiences by communication mode; and predictors of loneliness. We analyzed National Core Indicators data from 26 US states involving over 13,000 service users grouped by primary means of expression: natural speech, gestures/body language, manual signs, or communication aid/device (aided AAC). Uptake of aided AAC was low; only 0.8% of participants used aided AAC as their primary means of expression. Valid interview responding was higher in turn for participants communicating with natural speech, aided AAC, and other modes. Almost half the participants were lonely, but loneliness did not differ by communication mode used; social contact and social climate variables predicted loneliness. Individuals who used aided AAC communicated more effectively than users of other non-speech modes, supporting more widespread use of aided AAC. Loneliness was prevalent but aided AAC users were not lonelier. Interventions to reduce loneliness are discussed.