People with disabilities face persistent inequities in access to high-quality, affordable health care. Studies have documented a range of barriers, including a lack of accessible doctors’ offices and exam room equipment, biases and a lack of disability competency among health professionals and staff, limited availability of transportation to appointments, and inadequate health insurance coverage (Iezzoni et al. 2021; Lagu, Griffin, and Lindenauer 2015; Krahn, Klein-Walker, and Correa-De-Araujo 2015; MACPAC 2013; National Council on Disability 2009; Stillman et al. 2014). Access barriers often result in incomplete medical exams and lower rates of preventive screenings and recommended treatments for people with disabilities, as well as a greater likelihood of delaying or forgoing needed care, leading to worse health outcomes (Chong et al. 2022; Iezzoni et al. 2000; Kennedy, Wood, and Frieden 2017; Mitra et al. 2022).

Additional challenges stem from difficulty obtaining consistent access to medical equipment and supplies, home health care, personal assistance services,2 and skilled therapy services that are critical for the health and well-being of many people with disabilities and their ability to live independently and participate in their communities. Supply chain and workforce shortages and other disruptions during the COVID-19 pandemic, many of which have persisted, have exacerbated problems with obtaining care (Akobirshoev et al. 2022; Kreider and Werner 2023; Lund and Ayers 2022; Monden et al. 2021; O’Malley Watts, Musumeci, and Ammula 2021; Sage, Standley, and Ipsen 2022).4 Though people with disabilities of all ages are affected by these gaps in the health care system, nationally representative data on access to disability-related health services is limited for adults under age 65. Existing survey evidence from selected states and population groups, however, suggests that many nonelderly adults experienced unmet equipment and service needs prior to the pandemic (Chong et al. 2022; Henry et al. 2011; Mitra et al. 2011).

In this brief, we assess the extent to which nonelderly adults with disabilities and members of their households delayed getting or did not get medical equipment, supplies, and other vital services and supports between mid-2021 and mid-2022, the second year of the COVID-19 pandemic. We also focus on the types of equipment and supplies households had difficulty obtaining and the reasons for delayed or unmet needs. Our analysis draws on June 2022 data from the Urban Institute’s Health Reform Monitoring Survey (HRMS), a nationally representative survey of adults ages 18 to 64 living in households. Our measure of disability status is based on current federal data collection standards and is defined as having vision, hearing, cognitive, ambulatory, self-care, or independent living difficulties (see the data and methods section in the appendix for more information). Survey questions on delayed and unmet needs were developed in collaboration with members of a Community Advisory Board who have lived experience with disability and who serve as advocates for people with disabilities. Key findings include the following:

• In June 2022, 15 percent of adults with disabilities reported that they or someone in their household delayed getting or did not get the medical equipment or supplies they needed in the past 12 months. Some adults with disabilities also reported that they or a household member experienced delayed or unmet needs for physical or occupational therapy (12 percent), home health care (5 percent), personal assistance services (4 percent), and speech therapy (3 percent).
• For each of these items and services, adults with disabilities were more likely than adults without disabilities to report delayed or unmet needs, both for themselves and for other people living in their households.
• Among households of adults with disabilities in which someone delayed getting or did not get needed medical equipment or supplies, the most common types of equipment and supplies that were delayed or not received included eyeglasses (40 percent), breathing equipment (34 percent), mobility equipment (29 percent), diabetes equipment and supplies (27 percent), and hearing aids (15 percent).
• The most frequently reported reasons for delayed or unmet medical equipment and supply needs among these households were related to difficulties using health insurance coverage (Box 1). These reasons included the equipment or supplies not being covered by the health plan (52 percent), difficulty securing health plan authorization (47 percent), and being unable to afford the cost sharing (47 percent). About 1 in 3 also reported difficulty obtaining a prescription from a provider (33 percent), more than 1 in 4 reported equipment or supplies being unavailable because of supply chain shortages (27 percent), and just over 1 in 5 reported a lack of health insurance (21 percent).
• Delayed and unmet needs for medical equipment and supplies, skilled therapy services, home health care, and personal assistance added to the broader range of health care access challenges facing adults with disabilities, including forgoing other types of needed health care in the past 12 months because of cost, difficulty using coverage, and difficulty finding or getting to health care providers.

Because the HRMS is an internet-based household survey, it underrepresents the disabled population, as we discuss in the section on data and methods. Moreover, the survey did not examine the full spectrum of home- and community-based services (HCBS) that assist people with disabilities with daily living activities (Peebles and Bohl 2014). The survey was also fielded during a period of significant turmoil in the health care system and policy responses to mitigate its consequences for patients. Despite these limitations, the findings from our analysis show that many adults with disabilities have difficulty getting vital medical equipment, supplies, and services for themselves and other members of their households and that policymakers will need to address insurance, provider access, and supply-related barriers to alleviate these challenges.

Urban Institute, March 2024