In early January, I received a letter in the mail from the Wisconsin Department of Health Services. The letter informed me that I had been approved for Medicaid-funded Home and Community-Based Services (HCBS), a form of long-term care. It had been five months since I’d applied to the program, after being discharged from the hospital in August 2024 as a new full-time wheelchair user.
Receiving HCBS meant, among other things, I now had care workers who could help physically lift me and my wheelchair up the 20 stairs to my inaccessible apartment, so that I would be able to occasionally leave my home. It also meant I no longer had to worry about how I would get food, shower safely, or take care of the trash piling up by my front door.
I am one of the at least 5.8 million disabled and elderly Americans who rely on long-term care services to survive. At least 4.2 million of those Americans receive Home and Community-Based Services, a form of long-term care in our homes. Home and Community-Based Services are funded through state Medicaid waivers, which grant Medicaid eligibility to people that meet a certain set of criteria either separate from, or in addition to, existing Medicaid eligibility criteria.
While eligibility for Medicaid waiver programs varies by state, these programs often do not have the same burdensome disability determinations as the Social Security Administration. Instead, they assess disability and care needs through a functional screen. Income eligibility may be higher and services more expansive than those offered under traditional Medicaid.
However, the Trump administration has launched several attacks to Medicaid and long-term care, claiming an intention to return Medicaid to its “original purpose.” The Trump administration claims this means Medicaid will focus on serving its initial target population — low-income people and people with disabilities.
However, the Medicaid cuts the administration has proposed will decimate the care of these very groups. Proposed cuts include the elimination of waiver programs like HCBS, work requirements, per-capita funding caps, a roll-back of Medicaid expansion, and funding Medicaid through block grants. (Block grants are fixed amounts of money that do not increase even if costs to run programs like Medicaid outpace available funding.) All of these proposals would significantly limit the scope of Medicaid, reduce funding provided to states, and remove people from the program. Work requirements, in particular, would take a devastating toll on disabled people like me who rely on long-term care.
While conservative policymakers have, in the past, alleged that work requirements would not apply to disabled people, that really just means those who meet the federal definitions of disability — and those are grossly misaligned with disabled people’s lived experiences. Seventy-nine percent of disability claims to the Social Security Administration are initially denied. If the Trump administration continues to follow the blueprint of Project 2025, it may make eligibility criteria for social security insurance or social security disability insurance even stricter by converting the former into a block grant as well. Fixed funding through block grants, not to mention reported plans to gut 50% of the Social Security Administration’s workforce, likely means reduced enrollment. This means that a majority of disabled Americans are not, in fact, determined disabled by the federal government, even if they are unable to work. If cuts include work requirements, millions of disabled Americans could lose access to Medicaid and long-term care.
The day my first care worker arrived in my apartment after the State Department of Health approved my long-term care services, I received another notice in the mail. It said my community waivers, another term for HCBS, would be terminated because I had not yet been determined elderly, blind, or disabled by the Social Security Administration.
I left a tearful voicemail at my local aging and disability resource center. I didn’t understand, I said. Hadn’t the state told me I didn’t need a disability determination from social security? My case manager called me back the next day. The eligibility notification I had received didn’t mean what I thought it meant. I was still eligible.
For now, that is. The fear that I will lose eligibility still hangs heavy in the face of the Trump administration’s proposed Medicaid cuts and the executive order to freeze federal funding. I am entirely reliant on a wheelchair for mobility inside and outside my apartment. I rely on over a dozen prescription medications. My disability is obvious to anyone who knows or looks at me.
Yet, the most aggressive forms of ableism are often those that are baked into federal definitions of disability. Unnecessarily restrictive federal criteria have been used to deny disabled people access to lifesaving government resources. Many disabled people die waiting for a Social Security disability determination. Other times, sweeping federal definitions of disability, like the historical use of the term “feebleminded,” weaponize ableist tropes of disabled people as unfit, undesirable, and “parasites” to target large swaths of marginalized people for elimination, disabled or not, including people of color and poor people. This is not new, either. This is eugenics.
Even if Medicaid itself continues to exist, I fear a return of policies of the past that aimed to keep disabled people out of the public sphere, segregated in institutions, and further exposed to death.
Before the implementation of HCBS during the Reagan administration in the 1980s, Medicaid provided no option for disabled and elderly people to receive long-term care in their homes. This is called institutional bias, and it means that a majority of disabled people who needed daily care were segregated into institutions such as nursing homes. In 1999, the Supreme Court ruled in Olmstead v. L.C. that segregation of disabled people in long-term care facilities such as nursing homes constitutes disability discrimination under the Americans with Disabilities Act. Olmstead paved the way for an even greater use of Medicaid waiver programs that exist today such as HCBS, meaning that disabled people can ideally live integrated in the community.
While conservatives have historically called waiver programs like HCBS “budget-busting” and Medicaid itself “wasteful,” what they really mean is that these programs are expensive, because they keep people alive. In reality, HCBS is far cheaper than institutional care, saving Medicaid an estimated $21 billion. However, there is likely a profit incentive to keep disabled people in institutions, as the current administration has demonstrated that “cutting federal waste” actually means diverting money away from regular citizens and into the pockets of corporations and the 1%. Seventy percent of nursing homes are for-profit, and nursing home executives make money off of institutionalizing as many people as possible while forcing them to rely on critically low staffing for care.
As a disabled person who now relies on HCBS to remain in my community, the shadow of the nursing home looms in the face of Medicaid cuts. I know I am not alone in this fear, as disabled people have both presently and historically fought for many years to live integrated into our community.
Congress is aiming to cut $880 billion from Medicaid. Despite advocating to save Medicaid and writing a letter to Congress, Democrats in my state of Wisconsin have not explicitly named the importance of saving programs such as HCBS. These policymakers need to know that these programs need to be prioritized and protected. My life, and the lives of so many other disabled people depend on it. We are not disposable.
Rachel Litchman is a cartoonist, writer, and consultant who works at the intersection of the disability nonprofit and homeless youth services sector.