• Description

In this brief, we examine challenges that adults with disabilities and members of their households face when trying to obtain home- and community-based services and other health care. Our analysis draws on nationally representative survey data and in-depth follow-up interviews with disabled adults who reported delaying or forgoing needed services.

Many people with disabilities require home health care, personal assistance, physical or occupational therapy, medical equipment and supplies, and other home- and community-based services to live independently in their communities and meet complex medical needs. Despite shifts in public funding for long-term services and supports toward home and community settings over time, barriers to accessing home- and community-based services have persisted and worsened dramatically in the wake of the COVID-19 pandemic. These barriers intersect with and magnify other challenges people with disabilities face when navigating the health care system.

We analyzed data on adults ages 18 to 64 who reported having disabilities in the December 2022 round of the Urban Institute's Well-Being and Basic Needs Survey. In May and June 2023, we conducted follow-up interviews with 25 survey participants who reported any delayed or unmet needs for selected home and community-based services. Members of a community advisory board with lived experience with disabilities and professional experience as disability advocates informed each stage of the research process.