During a time of tremendous change nationally, AAHD continues to advocate for the health of people with disabilities. We publish an annual list of Policy Priorities. In this ongoing blog series, we will dive deeper into our policy work for 2025. This post is being released as we’re seeing attempts to weaken and defund critical healthcare programs like Medicaid. Medicaid is the foundation for what makes Independent Living possible, and is the focus of this first explainer piece on our policy work. Follow our Policy Updates and the Disability & Public Health Newsletter to stay on top of our current advocacy on these issues.
We’re fighting for Affordable, Accessible Health Care:
Medicaid is a key component of providing independent living for people with disabilities. Without a public program which guarantees coverage, insurance is the key to accessing health services in this country. We know that public health insurance programs comprise the single largest source of health coverage for people with disabilities. About people with disabilities were covered under public plans (i.e. Medicare and/or Medicaid) in 2022, with 20.8 million on a private plan (through their employer or the ACA Marketplace). In 2023, over 15 million people with disabilities were covered under Medicaid. People with disabilities are more likely than the general population to be insured, but nearly 10% of the U.S. disability population goes without coverage.
Federal and state health policies and programs are essential for supporting people with disabilities to access health providers and long-term care services. Medicaid is the program that covers most long-term services and supports (LTSS), including home and community-based services (HCBS). Medicare also provides health coverage for some people with disabilities who are under 65. Some people are enrolled in Medicaid and Medicare if they qualify for both programs. These people are referred to as “dually-eligible”. There were over 12.8 million people who received coverage from both Medicaid and Medicare in 2024.
The passage of The Patient Protections and Affordable Care Act (“ACA”) launched the Health Insurance Marketplace through Healthcare.gov in 2013. This program is sometimes referred to as “Obamacare”. The ACA also stopped health insurance companies from discriminating against people with disabilities who had “pre-existing conditions”. The ACA also requires essential health benefits for all plans on the Marketplace, to ensure basic needs are met for all.
In 2025, we are working to maintain these essential health insurance programs that people with disabilities rely on. We are also supporting efforts to ensure more comprehensive health insurance coverage through Medicaid, Medicare, and ACA marketplace plans. We know there are gaps in the current coverage that need to be addressed for people in these insurance programs.
In the United States it is widely known that we have some of the highest levels of spending on healthcare, compared to other high-income countries[i]. This is both nationally and in terms of individual costs. Despite our national wealth, we have some of the lowest health outcomes. Unlike many other high-income countries, we do not provide universal health coverage for our communities. In this system of care, often health needs go unmet, and many people experience health disparities as a result. For many, affordability is the greatest access-related challenge to receiving care. This is especially true for people with disabilities as [ii]. Finding accessible, trusted and disability-inclusive providers is also a challenge for people across the disability community[iii]. As we defend the systems of care that are essential for meeting the health needs of the disability community, we are also working to address questions of quality of care, access, and the social drivers that impact health within our current environment.
Medicaid & Disability
People with Medicaid rely on this program for access to essential healthcare and services. Independent living is made possible thanks to Medicaid. For people who live at home through the support of Home and Community-Based Services (HCBS), Medicaid is the only payer in the country for these services. Right now, Medicaid is more likely to cover stays in nursing homes than for someone to live in the community. This is called the “institutional bias”, because state Medicaid programs are only required to cover supports in institutional settings though they can provide HCBS through a waiver program. In order to get this care at home, many people need to spend a long time on a waiting list for one of the waiver program. The ticket to receiving these supports at home is called the HCBS waiver. Groups like Caring Across Generations are some of the leading advocates calling for full funding of HCBS to ensure it’s available to anyone who needs it. More funding would support a hearty care workforce too. Community living was affirmed as a right for people with disabilities with the Olmstead Supreme Court decision in 1999. Full realization of this right requires HCBS.
Medicaid is also the primary source of funding for community-based mental health services, including for substance use recovery supports. There are also essential habilitation services that many people with intellectual disabilities use that are covered by Medicaid. When people are able to access Medicaid, they get the preventive care they need to avoid unneeded hospitalizations.
Medicaid is now the single biggest source of federal funding for states, which partner with the federal government to fully fund each state Medicaid program. In states that have Medicaid expansion, more people with disabilities are insured[iv]. Medicaid coverage differs by state. This makes it harder for people to move across state lines and retain consistent coverage. Coverage for benefits like dental care also differs depending on the state.
In recent years, Medicaid coverage has been under pressure. When the Biden administration announced the end of the COVID-19 Public Health Emergency, the continuous coverage requirement ended and many people lost their Medicaid coverage when they were required to complete a renewal to maintain continuous coverage. This can be a challenging process for many people with disabilities even in a typical year. What was called the “Unwinding” represented one of the challenges to continuous health coverage. For people relying on coverage of services affecting daily living, they can be disenrolled from Medicaid coverage due to administrative errors. Some individual’s income fluctuates which changes their eligibility for the Medicaid program resulting in their losing coverage. This process is called “churn” and can be extremely disruptive for people with disabilities.
Health Coverage in 2025
Medicaid changes have been prominent in the news recently. Kaiser Family Foundation has advised that even without Congressional action, the incoming administration may take dramatic action on Medicaid, including allowing states to impose work requirements. This could include major funding cuts. A recent House budget proposal implies dramatic cuts and changes to Medicaid.
These proposals would grant a standard amount of Medicaid funding to each state, regardless of the amount needed to provide adequate care to each individual enrolled. With per capita caps, the amount of funding available to each person receiving services would be the same, regardless of their health care needs. States would receive more funding for each person enrolled. With block grants, states would receive a standard amount regardless of how many people were enrolled. With either of these proposals, states may face financial difficulty covering Medicaid recipients with higher health care costs, including people with disabilities. Changes to how Medicaid is funded will put pressure on states to cover more of the program costs themselves. This could lead to reductions in coverage or benefits. Changes to federal Medicaid funding would trigger loss of coverage entirely for people in a few states.
More people may face challenges to their eligibility and benefits, with work requirements proposed. This would be a tremendous challenge to people with disabilities who are unable to work and even if people with disabilities are exempt from the requirements, the administrative burden of qualifying for the exemption could still result in loss of coverage for people with disabilities. Inclusive care also requires an intersectional lens. Immigrants with disabilities may also lose their coverage, and people with disabilities in the LGBTQ+ community are seeing challenges to what’s considered relevant care. Despite the implementation of non-discrimination rules under the Affordable Care Act, the current administration appears to be dismantling civil rights protections in real time. The Section 1557 page which details these regulations is no longer available, as part of a wave of eliminating federal webpages that are deemed part of a “DEI” initiative.
Our current health coverage systems need work. Without them, the private market will not meet the needs of people with disabilities. We need comprehensive coverage that meets the needs of all, and our work this year is to be part of maintaining and expanding coverage for our communities.
Stay tuned for our next blog post on our work to support comprehensive care through the Affordable Care Act.
References
[i] Gunja, M. Z., Gumas, E. D., & Williams II, R. D. (2023, January 31). U.S. Health Care from a Global Perspective, 2022: Accelerating Spending, Worsening Outcomes. The Commonwealth Fund. https://www.commonwealthfund.org/publications/issue-briefs/2023/jan/us-health-care-global-perspective-2022
[ii] Krahn, G. L., Walker, D. K., & Correa-De-Araujo, R. (2015). Persons With Disabilities as an Unrecognized Health Disparity Population. American Journal of Public Health, 105(S2), S198–S206. https://doi.org/10.2105/AJPH.2014.302182
[iii] Iezzoni, L. I., Rao, S. R., Ressalam, J., Bolcic-Jankovic, D., Agaronnik, N. D., Donelan, K., Lagu, T., & Campbell, E. G. (2021). Physicians’ Perceptions Of People With Disability And Their Health Care: Study reports the results of a survey of physicians’ perceptions of people with disability. Health Affairs, 40(2), 297–306. https://doi.org/10.1377/hlthaff.2020.01452
[iv] Stimpson, J. P., Kemmick Pintor, J., McKenna, R. M., Park, S., & Wilson, F. A. (2019). Association of Medicaid Expansion With Health Insurance Coverage Among Persons With a Disability. JAMA Network Open, 2(7), e197136. https://doi.org/10.1001/jamanetworkopen.2019.7136