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.

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.