In September 2023, the National Institutes of Health designated people with disabilities as a population experiencing health disparities, which will help ensure that people with disabilities are represented in research funded by the National Institutes. Also in September of 2023, the Biden Administration proposed a new rule that would update the requirements for nondiscrimination on the basis of disability. Among other changes, the proposed rule would codify the Olmstead court decision, which requires people with disabilities to be served in the most integrated setting that is appropriate. The new designation and proposed rule may reflect, in part, an increased awareness of the challenges and health disparities faced by people with disabilities, many of which were exacerbated by the COVID-19 pandemic and its aftermath.
In this analysis, KFF examines the characteristics of people with disabilities who are living in the community from the American Community Survey. State-level data are also available on State Health Facts.
Key takeaways include:
Over one in ten (11%) working-age adults ages 18-64 living in the community reported having a disability on the 2022 American Community Survey, which is defined as having a difficulty with hearing, vision, cognition, ambulation, self-care, or independent living.
Those 21.8 million working-age adults report difficulties with a range of different activities and are lower-income than working-age adults who did not report a disability.
Adults with disabilities are over twice as likely to have Medicaid as adults without disabilities, but fewer than a third receive income from the social security disability programs.
1. What are the demographic characteristics of working-age adults with disabilities?
People with disabilities tend to be older than other working-age adults, but the racial and gender distributions of people with disabilities are like those of people without disabilities (Figure 1). Nearly half (47%) of working-age adults with a disability are 50 years old or older, compared with only 30% of working-age adults without a disability. Smaller percentages of people with disabilities are ages 18-29, 30-39, and 40-49 than among adults without disabilities. Although the racial and ethnic distributions of working-age adults are similar for people with and without disabilities, among people with disabilities a smaller percent are Hispanic (17% compared to 20%) and Asian (3% compared to 7%), and a larger percent are Black (15% compared to 12%). Among working-age adults, roughly half are female regardless of disability status.
2. What types of difficulties do working-age adults with disabilities report?
Among adults ages 18-64 with a disability, nearly half report a cognitive difficulty and nearly half report having more than one difficulty (Figure 2). Of the 21.8 million adults ages 18-64 who report having a disability, nearly half report difficulties with cognition, which is defined as difficulty concentrating, remembering, or making decisions; over two-fifths report difficulties with ambulation (defined as difficulty with walking or climbing stairs); and over a third report difficulties living independently (defined as difficulty doing errands alone such as visiting a doctor’s office or shopping). Fewer working-age adults report difficulties seeing, hearing, and with self-care (defined as difficult dressing or bathing). Among working-age adults with a disability, 44% report having more than one difficulty, with 9% reporting four or more difficulties.
3. What is the income and employment status of working-age adults with disabilities?
Working-age adults with disabilities are almost twice as likely to have income below 200% Federal Poverty Level (FPL) compared with adults without disabilities (Figure 3). The income distribution of working-age adults with disabilities is lower than that of working-age adults without disabilities. One in four working-age adults with a disability have incomes below FPL ($14,880 for an individual, and $23,280 for a family of three on average in 2022). Income is generally higher for working-age adults without disabilities with only 10% reporting incomes below FPL and almost half having incomes above 400% FPL.
The percentage of working-age adults with disabilities who do not work is over three times greater than the percentage of working-age adults without disabilities who do not work (Figure 4). Lower income is likely related to lower levels of employment among working-age adults with disabilities: Almost half of people with disabilities do not work and one third work full time (35 or more hours per week). In comparison, over 64% of adults without a disability work full time and 16% do not work at all.
4. How do working-age adults with disabilities access health insurance coverage?
The percentage of people with Medicaid is over two times higher among working-age adults with disabilities compared with those without disabilities (Figure 5). Among working-age adults with disabilities, 38% have Medicaid, which includes 30% who have Medicaid only and an additional 8% who have Medicaid and Medicare (dual-eligible individuals). Among those without a disability, 13% have Medicaid and 1% have Medicare and Medicaid. Notably, the majority of Medicaid enrollees with disabilities qualify on the basis of low income rather than on the basis of disability. The Medicaid expansion under the Affordable Care Act (ACA) – which all but 10 states have taken up – is based only on income. Qualifying for Medicaid based on disability status generally involves a complex application process to determine the extent of the disability and typically includes an asset test. To be eligible for Medicare, people must generally be ages 65 and older, or have a disability that qualifies them for the federal disability insurance program (DI). For most people ages 64 and younger, Medicare coverage begins only after waiting a 2-year waiting period which starts after they have been approved for DI benefits. As a result, 8% of working-age adults with disabilities have Medicare as their only source of coverage compared with only 1% of adults without a disability.
All other coverage—including coverage through an employer, direct purchase, VA—accounts for 41% among working-age adults with disabilities compared with 74% of those without disabilities. Rates of employer coverage are nearly twice as high among adults without disabilities compared to those with (64% to 33% respectively). Uninsured rates are similar among working-age adults with and without a disability (10% and 11% respectively).
5. How many adults with disabilities receive income from the social security disability programs?
Fewer than a third of working-age adults with disabilities receive any income from the social security programs, including Social Security Disability Insurance (DI) and Supplemental Security Income (SSI). Social security income includes income from several programs that support people who are retired, have qualifying disabilities, are survivors of people who died and had paid into the system, or who have limited financial resources and either a qualifying disability or are age 65 and older. The two primary programs include SSI and DI:
SSI is a federal program administered by the Social Security Administration (SSA) that ensures a minimum level of income for poor people who are elderly or disabled. To qualify, SSI enrollees must have low income, limited assets, and either be age 65 or older or have an impaired ability to work at a substantial gainful level according to strict federal rules. Unlike DI, SSI is available to people regardless of their work history. As a result of strict SSA disability determination rules, not all people with disabilities qualify for SSI.
DI is a separate program from SSI also administered by the SSA. Unlike SSI, there are no income or asset limits for DI eligibility. Instead, to qualify for DI, enrollees must have a sufficient work history (generally, 40 quarters) and meet the strict federal disability rules. The amount of DI benefits is based on the person’s earnings history.
People receive both DI and SSI when their incomes (including DI benefits) are less than the maximum SSI payments. Among working-age adults with disabilities, fewer than one-third receive social security income: (14% receive DI, 12% receive SSI, and 3% receive benefits from both programs) (Figure 6).
Looking Ahead, what are key issues to watch?
What new challenges will emerge now that the COVID-19 public health emergency has ended? Working-age adults with disabilities are a heterogenous group that may be facing unique challenges as the nation emerges from the COVID-19 public health emergency. These challenges include higher rates of long COVID than among people without disabilities, and disruptions in access to ongoing services and supports including telehealth services and Medicaid home- and community-based services. Recognizing the importance of home- and community-based services (HCBS) for people with disabilities during the pandemic and the workforce shortages during that time, the federal government provided new funding and flexibilities for states when delivering HCBS. In many states, those policies are ending which may create additional barriers to accessing HCBS in some states. More broadly, Medicare, Medicaid, and private insurers increased access to telehealth services during the pandemic, which may have enabled people with disabilities to access medical care more easily than in-person visits. Broad Medicare coverage of telehealth is set to expire at the end of 2024 and other payers may also limit their coverage, which could reduce the increased access to care.
Long COVID may have disproportionately affected people with disabilities, but it may also cause higher rates of disability moving forward. Long COVID can create or exacerbate challenges in meeting basic needs and a December 2022 survey found that substantial numbers of people with long COVID—many of whom also had other disabilities—were having difficulty paying their bills are accessing sufficient food.
How are people with disabilities accessing the supports and services they need when average wait times for disability claims are at an all-time high and clerical errors result in missing benefits or notices that people must repay prior years’ benefits? Long wait times make it difficult for people to access benefits when they need them creating unique challenges for the 21.8 million working-age adults living with disabilities in the United States. For those that receive disability benefits through the social security programs, many are finding their benefits reduced on account of overpayments they owe because of past errors on the part of the Social Security Administration. The Administration has been sending overpayment notices to more than 2 million people each year, which ask recipients to repay the government within 30 days. In many cases, those payments had been made years earlier without the recipients’ knowledge. By the time they had been identified, the overpayment amounts may be far larger than people can repay, measured in tens or even hundreds of thousands of dollars. When beneficiaries are unable to repay the money, the government may reduce their monthly benefits. The Senate Finance Committee is expanding oversight of the Social Security Administration to address such issues, but it’s unclear how long it will take to sort through the prior clerical errors and to address the wait times.
How will Medicaid redeterminations affect coverage for people with disabilities? Medicaid plays an important role in helping working-age adults to access the health and long-term services and supports they need and the next year or so may present difficulties as states redetermine Medicaid eligibility for the first time in over three years. At the start of the pandemic, Congress enacted the Families First Coronavirus Response Act, which required states to keep people continuously enrolled as a condition of receiving additional federal funding, but that requirement ended March 31, 2023, and states have begun disenrolling people who are no longer eligible or who do not submit complete and timely paperwork, resulting in many millions of people losing Medicaid coverage. Although Medicaid renewals are challenging for all types of enrollees, redeterminations may require more paperwork for people who are eligible on the basis of disability; and the loss of health coverage is especially likely to disrupt access to ongoing health care.
How might a new proposed rule regarding nondiscrimination based on disability be finalized and when finalized, affect people with disabilities? On September 7, 2023, the Office of Civil Rights within the Department of Health and Human Services published a proposed update to the regulations that prohibit discrimination based on disability by recipients of federal funding. The proposed rule is the first comprehensive update of the regulations since they were established more than 40 years ago and the new requirements would strengthen protections for people with disabilities. The proposed rule would address discrimination in medical treatment and child welfare programs, establish accessibility standards for web and mobile delivery of health and human services benefits, and establish enforceable standards for accessible medical equipment. It would also codify the Olmstead court decision that requires services to be provided in the most integrated setting appropriate. Often, the most appropriate settings are financed through Medicaid home- and community-based services, but many of those programs have waiting lists for people to access care. It is unknown how the final requirements will compare to the proposed rule, but the new regulation is intended to help people with disabilities better access health care and social services.
How might a proposed change to the definition of disability in the American Community Survey affect people with disabilities and funding for programs that provide housing, transportation, health care, and education? Currently, the survey asks people whether they have difficulty with hearing, vision, cognition, ambulation, self-care, or independent living using a yes/no answer option. The proposed change would tweak the wording of the questions, but the biggest change is that respondents would be given four answer options instead of two: no difficulty, some difficulty, a lot of difficulty, and cannot do at all. The new questions and answers were developed in recognition that disability is a complex topic that may be difficult to define with a yes or no framework, to better identify people who may be at risk of restricted social participation, and to enable international comparisons. Under the proposal, people would be counted as having a disability if they reported they cannot do something at all or have a lot of difficulty, which could reduce the percentage of people with disabilities by 40%, raising concerns among people with disabilities, advocates for programs serving people with disabilities, and researchers using the data. Advocates and researchers note that the American Community Survey data are used for enforcing civil rights and allocating federal funding, which means changing the questionnaire could have significant policy implications.