An Equity-Based Research Agenda to Promote Social Inclusion and Belonging for People With IDD.

Having a sense of social inclusion and belonging, typically characterized by our personal relationships and community participation, is the central essence of life for most people, yet it remains elusive for many people with intellectual and developmental disabilities (IDD). This article summarizes the work of a diverse group of researchers and advocates to propose 6 big-picture, equity-based goals to drive future research in the field: (1) understanding the role of intersectionality, (2) understanding intimate relationships, (3) promoting formation of communities of care to support social inclusion, (4) understanding life course trajectories of social inclusion, (5) understanding social inclusion in virtual spaces, and (6) understanding how to promote social inclusion in the entire research process.

The design and methodology for a pilot study of home and community-based services outcome measures.

BACKGROUND: The Research and Training Center on HCBS Outcome Measurement (RTC/OM) developed and piloted measures in six domains to assess the outcomes experienced by HCBS recipients. These measures were based upon the revised National Quality Forum's HCBS Outcome Measurement framework. OBJECTIVE: The background and rationale for the pilot study are outlined along with the research design, sampling frame, and psychometric and statistical methods used. In addition, administration feasibility for all measures are described. Finally, a summary of results across all measures is provided. Detailed results for individual outcome measure domains are left to forthcoming publications. METHODS: Measure construct under study were piloted on a sample of 107 participants identified as receiving HCBS or HCBS-like services and experiencing one of five disabilities: intellectual and developmental, age-related, or physical disabilities as well as Traumatic/Acquired Brain Injury and Serious Mental Health Conditions. Participants were interviewed either in-person or through HIPAA compliant online video conferencing over one to two sessions. Psychometric evidence was evaluated with internal consistency and test-retest reliability, as well as inter-observer agreement. Nonparametric methods were used to test for group comparisons. RESULTS: Initial reliability and validity results of outcomes on five measures were good to excellent. No significant group differences between disability groups were found. CONCLUSIONS: The psychometric evidence for the tested measures is very promising. Only two of the six measures required significant changes prior to their use in an upcoming field study. Details on results and revisions for individual measures will appear in later publications.

Health professionals' education related to people with intellectual and developmental disabilities: A scoping review.

BACKGROUND: People with intellectual and developmental disabilities are among the most underserved in an inequitable healthcare system. METHODS: Using Arksey and O'Malley's methodology and a social determinants of health framework, we conducted a scoping review of literature on the state of practice in education of healthcare professionals in the health and healthcare needs of this population. RESULTS: Searches found 4948 articles, with 182 included in the final review. Themes identified included gaps of not being informed by workforce needs, continued use of the medical model of care, not addressing intersectionality with racial/ethnic and other discriminations, and lack of involvement of the population in developing/evaluating programs and promising trends of development of competency-based interprofessional programs with experiential learning. CONCLUSION: We provide recommendations for best practices in a concerted effort to educate a healthcare workforce equipped with the knowledge and skills to address the health needs of this population.

Examining Choice and Control for People With IDD Over Time.

Choice making is an important aspect of everyone's life in terms of fully becoming an adult within a democratic society. People with intellectual and developmental disabilities (IDD) are at risk for diminished choice making due to various factors, including guardianships; dependence on supports that are not person-centered; and, in some cases, limited capacity to express one's desires effectively. Independent Monitoring for Quality (IM4Q) data for 9,195 and 9,817 for adult services users with IDD were analyzed across two types of choice. Repeated measures mixed regression examined choice over time after controlling for age, support needs, residence type, and community type. We found significant increases in everyday choice making among IDD service users in Pennsylvania, but not in support-related choice. This study is the first to our knowledge to consider change in choice making, an important indicator of rights and inclusion for persons with IDD. By comparing three waves of data from the state of Pennsylvania (2013, 2016, and 2019), we were able to detect changes in choice making over time among home and community-based service (HCBS) users with IDD.

Participation and Companions for Socially Inclusive Community Activities by U.S. Adults With Intellectual and Developmental Disabilities.

We investigated socially inclusive participation in mainstream community groups and religious services by U.S. adults with intellectual and developmental disabilities using weighted secondary analyses of 2018-2019 National Core Indicators data. Overall, 34.4% participated in community groups and 42.4% in religious services. Some 45.0% had an unmet desire for community-group participation, whereas most (75.0%) attended a religious service as often as preferred. The type of companion varied by living arrangements and age group. Attending community groups and religious services were each strongly associated with better friendship outcomes but were not related to loneliness. The large unmet demand for community-group participation reveals a major gap. The friendship outcomes underline the benefits of socially inclusive community participation.

Leisure Participation of Autistic Adults: An Ecological Momentary Assessment Feasibility Study.

Autistic adults participate less and express lower satisfaction in leisure activities than nonautistic adults, although literature is limited. The multifaceted nature of leisure participation makes it challenging to measure, with most measures being retrospective. Ecological momentary assessments (EMA) can reduce recall bias. This pilot study assessed the feasibility and acceptability of EMA among autistic adults. Participants (N = 40) were recruited via email and online. After completing a baseline interview, participants were asked to complete a once-daily survey for 30 days, in which they received survey links through a text messaging smartphone app. Surveys asked participants to report whether they participated in any leisure activities during the day, their level of enjoyment, with whom they interacted, and where they participated. The EMA appeared feasible in this sample, as participants completed the daily survey on average 27.05 (SD = 3.92) days. Regarding acceptability, most agreed that survey timing was convenient, that it was easy to enter responses and answer questions daily, and that they had enough response time. Overall, this study supports the use of EMA methodology among autistic adults. Future research should follow and improve upon these EMA data collection practices to examine daily behavior and well-being among autistic adults.

Using the Independent Monitoring for Quality Program to Examine Longitudinal Outcomes for People With Intellectual and Developmental Disabilities.

The purpose of this study is to lay a foundation for illustrating the importance of longitudinal data collection by sharing the results of the Independent Monitoring for Quality (IM4Q) program in Pennsylvania designed to collect data over time on the quality of services for adults with intellectual and developmental disabilities. In this article, we report on the history and characteristics of the IM4Q program, describe the key variables of interest, and highlight the trends in the key variables over 3 years of data collection (2013, 2016, and 2019). The descriptive results indicate mixed trends for the three areas of focus: comparable rates of people employed in community-based settings, less support-related choice, and better everyday choice-making outcomes.

Current services and outcomes of formerly institutionalised and never-institutionalised US adults with intellectual and developmental disabilities: A propensity score matching analysis.

BACKGROUND: Deinstitutionalization research shows better services and outcomes relative to institutional life but has not compared formerly institutionalised and never-institutionalised service users. METHODS: We used propensity score matching (PSM) to match formerly institutionalised and never-institutionalised participants on six personal characteristics. Data came from the 2018 to 2019 National Core Indicators In-Person Survey. We excluded current institution residents, and states with 25% + of missing data on former institutionalisation. RESULTS: Overall, 15.5% of participants in the 29-state full sample had lived in an institution for 1 year or more. Findings from the PSM sample showed that former-institution residents were more likely to use congregate living arrangements and less likely to live with family. They experienced more loneliness, less support-related choice, and had a consistent pattern of disability service-focused social connections. CONCLUSIONS: Many former institution residents remain disadvantaged relative to matched peers. There is a need to identify factors to enhance services and outcomes following deinstitutionalization.

Risk Adjustment in Home and Community Based Services Outcome Measurement.

The purpose of this study was to review and evaluate existing research that used risk adjusters in disability research. Risk adjustment controls for individual characteristics of persons when examining outcomes. We have conducted a systematic review and an evaluation of existing studies that included risk adjusters for outcomes of people with disabilities receiving services (home or community based). The process included coding each study according to the type(s) of risk adjusters employed and their relation to the specific population and outcomes within a framework. Panels were utilized to prioritize the risk adjusters. Findings indicate that four risk adjusters can be tentatively recommended as potential candidate risk adjusters: chronic conditions, functional disability, mental health status, and cognitive functioning. Holistic Health and Functioning far outweighed other outcomes studied to date. Further, there is a need for testing recommended risk adjusters across multiple outcomes and different populations of people with disabilities.

Community participation and staying home if you want: US adults with intellectual and developmental disabilities.

BACKGROUND: Requiring adults with intellectual and developmental disabilities to go on community outings with co-residents and staff is contrary to community-living policy's focus on person centredness and choice of activities/companions. METHOD: We analysed 2018-19 National Core Indicators data from 36 US states concerning 7968 adults living in staffed, non-family, multi-client settings. The focus outcome was being able to stay home if you want when others in your home go out. RESULTS: The 42.0% of participants who could stay home were more likely to go out with friends, family or alone, and less likely to go out with staff. Those who could stay home participated in a similar variety of community activities and went out more often to shop or for errands. CONCLUSIONS: Individuals who could stay home likely had more choice about where, when and with whom they went out. Strategies for greater person-centredness are proposed.

Incentives, Wages, and Retention Among Direct Support Professionals: National Core Indicators Staff Stability Survey.

Direct support professionals (DSPs) provide a range of supports in a variety of settings to people with intellectual and developmental disabilities (IDD) who count on these supports to live, work, and contribute in their communities. Despite this, high annual DSP turnover rates are problematic. DSP turnover is disruptive to people who receive supports as the lack of stable, reliable supports can negatively impact their important day-to-day outcomes (e.g., safety, community participation, and choice). Turnover also comes at a cost to provider organization in the hiring and training of new employees. To retain DSPs, organizations offer incentives (e.g., bonuses, retirement plans, health insurance). This study utilized National Core Indicators® (NCI®) Staff Stability Survey 2018 data to examine the relationships between wages, different types of incentives, including benefits (e.g., paid time off, access to health insurance, disability insurance, wage bonuses, health incentives programs, etc.) to annual turnover in participating states in the United States. Results indicated that incentives were not positively associated with DSP retention. Staff wages were the most notable factor associated with differences in DSP retention rates, along with the state in which the organization was located as well as organization vacancy rates.

Policy Implications, Eligibility, and Demographic Characteristics of People With Intellectual Disability Who Access Self-Directed Funding in the United States.

This study identifies factors (state of residence, personal characteristics, and living situation) associated with access to self-directed funding (SDF) for adults with intellectual disability in the United States. Data from 10,033 participants from 26 states in the 2012-2013 National Core Indicators Adult Consumer Survey were analyzed. We examined state, age group, residence type, disability diagnoses, mental health status, and type of disability support funding used. Availability of SDF for people with ID varied by state and aligned mostly with state-by-state policy data on SDF eligibility and availability. The results of a logistic regression analysis demonstrated that access to SDF was lower in older adults and higher for people who lived in their parents' or relatives' home, an independent home, and with certain personal characteristics. Potential influences from policy and practice, and approaches to increase access to SDF are discussed.

Predictors of Annual and Early Separations Among Direct Support Professionals: National Core Indicators Staff Stability Survey.

Direct support professionals (DSPs) provide a broad range of supports in a variety of settings to people with intellectual and developmental disabilities (IDD) that enables people to live, work, and participate in their communities. Despite the crucial importance in ensuring supports for community participation of people with IDD, high rates of annual turnover among DSPs in organizations that employ them have been documented for decades. This study utilizes National Core Indicators Staff Stability data from 2016 to examine the impact of organizational- and state-level factors related to DSP turnover, including annual DSP turnover and the percentage of DSPs who left their positions after less than 6 months. At the organizational level, a higher turnover rate in the last 12 months was significantly related to lower DSP wages and to not offering health insurance. At the state level, a higher turnover rate in the last 12 months was significantly related to a lower percentage of people living in individualized settings and lower per capita Medicaid spending. For early turnover at the organizational level, a higher percent of leavers within 6 months of tenure was significantly related to not offering paid time off and health insurance, higher vacancy rates, higher proportion of part-time DSPs, and lower overall staff sizes.

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.

Association of state-level and individual-level factors with choice making of individuals with intellectual and developmental disabilities.

BACKGROUND: State-level factors have not been examined in research on choice, despite findings of between-state differences. AIMS: To examine both individual and state-level factors associated with choice. METHODS AND PROCEDURES: We used multilevel modeling to explore two choice scales, support-related and everyday choice, based on the National Core Indicators (NCI) data from 2013-14. OUTCOMES AND RESULTS: At the individual level, milder ID, greater mobility, fewer problem behaviors, answering questions independently, communicating verbally, and living in a non-agency setting, particularly independent settings, were associated with more choice for both scales. State-level factors overall explained variance for both scales, but were more strongly associated with support-related choice. A higher proportion of people with IDD living independently within the state predicted more support-related choice. High cost of living within a state predicted less everyday choice. Higher proportion of people living with family and lower proportion being served within a state predicted more everyday choice. CONCLUSIONS AND IMPLICATIONS: These findings suggest further study of choice in relation to policies that: (1) increase independent living for individuals with IDD, and (2) assist individuals/families living in high cost states. State differences on important QOL outcomes are likely to be associated with economic and system-based factorsbeyond individual 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.

System and individual outcomes and their predictors in services and support for people with IDD.

The growth and advancement of community-based services for people with intellectual and developmental disabilities (IDD) have resulted in vast changes in the long-term services and support landscape as well as in expected outcomes of service systems for service recipients. Investments in IDD research have been made to provide a deeper understanding of these outcomes and to explain them. This article summarizes outcomes and their predictors through systems and individual lenses by examining the research and findings of the Administration on Intellectual and Developmental Disabilities' Data Projects of National Significance that address residential services, employment services, costs of services, and individual outcomes. The article also discusses challenges and debates associated with outcome-related research and poses future research questions.

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.