Since the new administration took office in January, policy changes have been moving fast. Currently, the Republican led Congress (the House) is dangling the threat of major budget cuts to social safety nets over the senior and disabled community, leaving a lot of EDSers and others quite stressed about the continuity of their health care coverage going forward.
Chief among these is the threat to cut Medicaid and its companion program, the Children’s Health Insurance Program (CHIP), the health care coverage provided to the poorest Americans who can access it. Some dispute this, saying the proposed budget is only demanding that we cut $880 billion from Medicaid’s funding center, the House Energy and Commerce Committee over the next ten years, not Medicaid directly. But, as cuts to Medicare are off the table for now, per KFF Health News, the only possible way this could happen would be with cuts to Medicaid. This threat looms large for the roughly 79 million folks including children currently on the rolls.
You do not have to be disabled to receive Medicaid, though a large proportion of disabled folks in the US are on it. It is need-based. All of the US Medicaid programs are administered by individual states, so the names for it vary from state to state. In Oregon, it is called the “Oregon Health Plan”. In Washington state, it’s called “Apple Health”, and “CubCare” in Maine, and “Medi-Cal” in California for instance. (See this list to find yours if needed.)
According to the Center for Budget and Policy Priorities in 2020, Medicaid is a public insurance program created in 1965 that “…provides health coverage to low-income families and individuals, including children, parents, pregnant women, seniors, and people with disabilities; it is funded jointly by the federal government and the states. Each state operates its own Medicaid program within federal guidelines. Because the federal guidelines are broad, states have a great deal of flexibility in designing and administering their programs. As a result, Medicaid eligibility and benefits can and often do vary widely from state to state.”
The states are sent federally allocated funds which they are then left to administer to provide this health care as they see fit under federal guidelines. The federal government pays 68% toward each state’s Medicaid program. The states then make up the rest as they are able, so there is no universal plan to refer to or describe for you, unfortunately.
Medicaid is not the same as Medicare, which is the government-run health insurance required for US citizens over age 65, and disabled people of any age after two years on Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) in the US, some of whom may also get Medicaid if they are poor enough. Medicaid is a needs-based program, not based on disability. So working and other poor people of all abilities can get Medicaid too. Thus, it acts as a social safety net that has greatly benefited millions over the years, especially in states that have expanded their Medicaid programs over the years.
Medicaid coverage was expanded nationwide under the Affordable Care Act in 2010 (aka “Obamacare”), and then again during the early years of COVID after 2020, although this latter expansion was optional. Approximately 40 states chose to expand their Medicaid coverage during this period as of 2023, and some are trying to keep this expansion if they can. However, the threatened cuts to the Medicaid budget may endanger not only this most recent expansion, but the existence of Medicaid entirely for some people.
Who is affected?
A brief by Justice in Aging discusses the impact this could have on the over seven million Americans age 65 and older and nearly eleven million from ages 50 to 64 who rely on Medicaid every year. Other younger disabled people will suffer a similar fate. They noted:
“Specifically, Medicaid is vital for older adults who need assistance with daily activities such as eating, bathing, dressing, and getting in and out of bed. The long-term assistance that they need, whether provided at home or in a nursing home, is typically paid for by Medicaid, and not Medicare. In fact, more than 6 in 10 nursing home residents rely on Medicaid.
Medicaid also helps over 12 million older adults and people with disabilities pay their Medicare premiums and out of pocket costs. Dually eligible Medicaid and Medicare beneficiaries live on limited fixed incomes with few assets. They would not be able to afford Medicare without Medicaid assistance.”
According to a study we recently featured in an article about the financial burden of EDS, over half of the 884 respondents reported making less than $25,000/year. And 29% were on Medicaid, so not a small proportion of the EDS community based on just this sample. And millions of children of poor families (disabled or not) are covered by CHIP, the supplement to Medicaid for kids. (It is also affected by the proposed budget cuts.)
According to KFF Health News even when there are no budget cuts, roughly 65% of people who lose Medicaid coverage become uninsured for a period of over a year after that. The others may re-enroll a short time later, in what is called “churn”. But with these looming budget cuts, it may not be possible to “churn” or re-enroll in some cases or states. This is leading to a lot of uncertainty and added stress for chronically ill and disabled people all over the United States.
The Senate passed their version of the bill on April 5th, but Congress also passed theirs April 10th, 2025, which allows them to unlock reconciliation by a simple majority this time around. According to the Medicare Rights Center, the White House is pushing to get this bill completed and ready to sign by May 31st, 2025. So it may be signed by President Trump shortly after this article was published if they get their way.
KFF Health News has hypothesized that these cuts could affect up to 18% of disabled and senior enrollees, 38% of adult Medicaid enrollees and 76% of child enrollees. But the details of how the cuts, if any, will be made are still to be determined. And further, they will affect each state differently and to varying degrees.
Some states will be better equipped to make up for any shortfalls in federal funding than others, and may see little change. Others may have to raise tax revenue to cover the shortfall or make cuts to other parts of their budgets, such as education. Each state will handle how they respond individually based on many factors, including financial and political. But until the bill is reconciled fully, lobbying your US Congressional representative is best.
What you can do
Besides lobbying your member of Congress as much as possible (calling, writing, emailing, attending town halls if any are available), try not to panic. Not all enrollees or care will be cut, nor right away even if it passes with the highest proposed cuts. This budget resolution is supposed to cover the next ten years. A lot can happen in that time. And, every state is different and will handle this differently. So unfortunately we cannot say with any clarity how you or anyone may be directly affected, or when, even if the bill is finalized in May 2025.
Jan Groh, author OhTWIST blog, co-author EDS Toolkit for Doctors April 18, 2025
Resources used for this article
- US Government Medicaid figures: https://www.medicaid.gov/medicaid/program-information/medicaid-and-chip-enrollment-data/report-highlights
- House Energy and Commerce Committee – Health subcommittee: https://energycommerce.house.gov/committees/subcommittee/health
- Related enrollment news from KFF: https://www.kff.org/report-section/medicaid-enrollment-and-unwinding-tracker-enrollment-data/
- A January 2023 brief discussing what happens after Medicaid was cut in years past from KFF: https://www.kff.org/medicaid/issue-brief/what-happens-after-people-lose-medicaid-coverage/
- Why so many names for Medicaid via Yahoo News 2025: https://finance.yahoo.com/news/medicaid-goes-by-many-names-will-americans-realize-if-it-gets-cut-100005873.html
- State names for Medicaid 2025 via US Gov: https://www.medicaid.gov/state-overviews/state-profiles
- What is Medicaid? https://www.cbpp.org/research/policy-basics-introduction-to-medicaid
- The ACA and Medicaid expansion: https://www.macpac.gov/subtopic/medicaid-expansion/
- Brief by Justice In Aging on Medicaid impacts: https://justiceinaging.org/how-medicaid-funding-caps-would-harm-older-adults/
- Obamacare basics – what is the Affordable Care Act? https://www.findlaw.com/healthcare/patient-rights/obamacare-basics-understanding-the-affordable-care-act.html
- What is CHIP: https://www.medicaid.gov/chip
- FY25 House budget bill: https://budget.house.gov/press-release/house-unlocks-reconciliation-to-deliver-president-trumps-full-america-first-agenda
- What’s in the FY2025 Budget Resolution: https://bipartisanpolicy.org/explainer/whats-in-the-fy2025-senate-budget-resolution/
- How this budget may play out per KFF Health News March 2025: https://www.kff.org/medicaid/issue-brief/putting-880-billion-in-potential-federal-medicaid-cuts-in-context-of-state-budgets-and-coverage/
- Find my representative: https://www.house.gov/representatives/find-your-representative
