Self-Advocate and Family Member Experiences With Supported Decision Making.

Supported decision making (SDM) is a needed focus of policy and practice to enhance opportunities for people with disabilities to exercise self-determination as they are supported to make decisions about their life. This study used content analysis to analyze five focus groups comprised of 27 adults with intellectual and developmental disabilities (IDD) and 16 family members to understand how people with IDD use supports for decision making and how families support decision making. People with IDD and family members described a range of strategies and supports they used for decision making, including engaging trusted supporters, accessing technology, and using early experiences to build decision-making skills. Findings from this research can inform development of practices and policy to enhance use of SDM in research, policy, and practice.

Understanding the Impacts of COVID Policy Changes on Access to Needed Supports for Families With Children Receiving Medicaid HCBS Waiver Services.

The COVID-19 pandemic necessitated rapid policy changes to address new demands on disability service systems. A statewide survey of families of people who received Medicaid funded home- and community-based (HCBS) long-term services and supports (LTSS) in one Midwestern state was conducted to understand (1) utilization of services allowed under the policy change, (2) family's experiences if their family member with a disability accessed the services, and (3) family's perspectives on the need for ongoing changes in the future. Overall, the results suggest that a subset of families took advantage of flexibilities introduced into service delivery models during the pandemic, and the changes-when accessed-addressed important needs that a large majority of families that accessed the services hoped would be sustained in the future.