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.

WHY THIS MATTERS

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.

WHAT WE FOUND

• Nonelderly adults with disabilities reported challenges getting a variety of services, equipment, and supplies.
  • In December 2022, many survey respondents with disabilities reported they delayed getting or did not get needed medical equipment or supplies (18 percent), physical therapy and other skilled therapy services (17 percent), home health care (6 percent), and personal assistance services (6 percent) in the past year.
  • Adults who participated in in-depth follow-up interviews also described difficulty accessing home adaptations and transportation.
• Insurance barriers were a common reason for delaying or forgoing needed services.
  • Uninsured interview participants reported especially severe challenges accessing care.
  • Among those with health insurance coverage, many faced barriers related to coverage limits, prior authorization processes, claim denials, and delayed reimbursement for covered benefits. Narrow provider networks and transitions in coverage causing changes in those networks contributed to disruptions in care.
  • Participants struggled to meet stringent eligibility criteria for long-term services and supports in Medicaid as well as federal disability insurance programs that are often used to determine eligibility for public coverage.
• People faced additional challenges interacting with health care providers, home health care agencies, and medical equipment suppliers.
  • Several participants had problems getting providers to write prescriptions, provide documentation needed for insurance reimbursement, or take their concerns seriously.
  • Provider shortages, supply chain issues, and equipment recalls presented additional access barriers.
• Delayed and unmet service needs had harmful effects on the health and well-being of adults and their families.
  • Health impacts of going without needed supports included injuries, worsening physical conditions, chronic pain, and poor mental health.
  • Difficulties accessing services also contributed to problems with carrying out daily activities, working, and participating in social activities; strained household budgets; and family caregivers who experienced increased stress and isolation, worse health, and job loss.

HOW WE DID IT

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.