While most people with Medicare are adults age 65 or older, Medicare also covers millions of younger people who qualify for Medicare based on having a long-term disability, or diagnosis with End-Stage Renal Disease (ESRD) or Amyotrophic Lateral Sclerosis (ALS, also known as Lou Gehrig’s disease). In 2022, 7.7 million people under age 65 with disabilities were covered by Medicare, representing 12% of all Medicare beneficiaries. Younger beneficiaries who qualify for Medicare because of disability are more likely than those who qualify based on age to have lower incomes and education levels, to be Black or Hispanic, and to be in worse health.
Medicare covers the same benefits for people of all ages, regardless of how they qualified for Medicare, and Medicare coverage options and financial assistance programs are generally the same – the main exception being that people under age 65 with disabilities do not have a guaranteed issue right to purchase Medigap supplemental policies. However, perhaps related to their different pathways to Medicare eligibility and because the program was originally designed to cover older adults, with coverage for younger people with disabilities added later, Medicare generally does not work as well for people under age 65 with disabilities. This conclusion is based on KFF analysis of surveys dating back to 2008 but not more recent than 2019. According to previous analysis, beneficiaries under age 65 with disabilities have reported worse access to care, more cost concerns, and lower satisfaction with care than those age 65 or older.
To get a more current understanding of how Medicare is working for older adults and younger people with disabilities, this brief analyzes data from the 2023 KFF Survey of Consumer Experiences with Health Insurance, a nationally representative survey of 3,605 U.S. adults with health insurance. This brief focuses specifically on the 885 adults with Medicare, including 165 adults under the age of 65 with disabilities.
This analysis provides a window into the challenges facing people with disabilities as they navigate the health insurance system by focusing on the experiences of younger adults on Medicare who qualify for the program due to having a long-term disability. The analysis highlights the ways in which beneficiaries under age 65 with disabilities may be less well served by the Medicare program than older beneficiaries. (While people with disabilities are also included among the population of Medicare beneficiaries age 65 or older, the survey sample is insufficient to focus on this group specifically.) People with disabilities who are covered by private insurance or Medicaid are likely to face similar challenges using their coverage. Insights from this analysis could help to inform efforts to strengthen the Medicare program, particularly for younger adults with disabilities.
- Overall, people with Medicare are more satisfied with their health insurance coverage than adults with other types of insurance, but among people with Medicare, those under age 65 with disabilities are less likely than those age 65 or older to give positive ratings to the overall performance of their insurance coverage (79% vs. 92%) and some features of it, such as the quality and availability of providers.
- Overall, a majority of Medicare beneficiaries under age 65 with disabilities say they experienced a problem with their health insurance in the last year (70%), compared to half (49%) of those age 65 or older. This includes a larger share of those under age 65 with disabilities who say they experienced denials or delays in getting prior approval (27% vs. 9%) or insurance not paying for care they received that they thought was covered (24% vs. 8%).
- A relatively small share of all Medicare beneficiaries who said they had a problem with health insurance in the past year reported difficulty accessing care as a direct result of these problems, but access problems were more likely to be reported by Medicare beneficiaries under age 65 with disabilities than those 65 or older. At least one in five Medicare beneficiaries under age 65 with disabilities who reported problems say they were unable to receive recommended treatment (24%) or experienced significant delays in receiving medical care or treatment (21%), compared to very small shares of those 65 or older who said the same (6% for both).
- Medicare beneficiaries under 65 with disabilities were more likely to experience difficulty with the health insurance enrollment process and comparing insurance options compared to beneficiaries age 65 or older, including figuring out if their income qualifies them for financial assistance (30% vs. 11%).
- Cost concerns related to insurance are an issue for Medicare beneficiaries of all ages, particularly when it comes to monthly premiums and out-of-pocket costs for prescription drugs, but a larger share of people with Medicare under age 65 with disabilities than those age 65 or older report certain problems. More than one in three people with Medicare under age 65 with disabilities report they had a problem paying a medical bill in the past 12 months (35%), compared to one in ten (9%) of those 65 or older. People with Medicare under age 65 with disabilities were also more likely to report delaying or going without specific health care services due to cost, such as dental care (42% vs. 24%), prescription drugs (18% vs. 10%), and doctor visits (14% vs. 4%).
- About half of people with Medicare under age 65 with disabilities self-report fair or poor physical health, compared to 19% of those age 65 or older, since, by definition, people under age 65 qualify for Medicare based on having a long-term disability. The higher rate of poorer self-reported health among beneficiaries under age 65 could contribute to a higher rate of health insurance problems.
- Three in 10 people with Medicare under age 65 with disabilities self-report fair or poor mental health status, compared to 1 in 10 (9%) of those age 65 or older, and a larger share also report problems related to mental health care availability and access, including reporting that there was a mental health therapist or treatment they needed that wasn’t covered by insurance (27% vs. 7%), and being unable to receive mental health services or medication in the past year they thought they needed (18% vs. 5%).