This commentary is part of TCF’s Beyond Health series, which discusses the many potential harms of up to $880 billion in potential Medicaid cuts across issue areas.
Congress, in alliance with the Trump administration, is once again trying to create a post-apocalyptic Groundhog Day scenario when it comes to health care. Recently, the House-passed budget resolution has targeted funding that will likely come from Medicaid, in a situation eerily reminiscent of the attempt to repeal the Affordable Care Act (ACA) in 2017.
Fast forward to 2025, when House Republicans, with support from the Trump administration, have teed up $880 billion in cuts to the Medicaid program over ten years. Cuts of this magnitude cannot be achieved simply by promoting “efficiencies,” but rather would entail cutting support for a broad array of services that Medicaid provides—services reductions that could be life-threatening for people with disabilities.
Lives on the Line
Medicaid is the program responsible for, among others, providing 4.5 million people with home- and community-based services (HCBS). HCBS are, in short, the care services that provide people—whether they are older adults, people with intellectual or developmental disabilities, physical disabilities, or mental health and substance use disorders—with the ability to live independently or in the community, rather than be institutionalized.
For people with disabilities, the loss of HCBS can be particularly devastating. Whether it’s dressing or undressing, bathing and toileting, helping prepare meals, or facilitating medication, these forms of personal care are a key component of home care services covered under HCBS, and their reduction can be life-threatening. When hours to support disabled people are cut, their care attendant can’t come as much and help them to the bathroom. As a possible result, disabled people put themselves through significant discomfort and risk their internal health by rationing this care. For people with disabilities, cutbacks to care can lead to health problems that too frequently mushroom into a crisis. When people don’t have access to these services, their basic health can become endangered.
The Medicaid program also provides supports for those seeking employment, home-delivered meals, and nonmedical transportation, among other services critical to the health and well being of disabled persons.
By proposing deep cuts to Medicaid, Congress, aided and abetted by the Trump administration, has once again levied a great and terrible threat on the American people. For example, the House may seek to achieve cuts by capping funds to states or reducing their options to pay for their share of costs, forcing them to ration care to people with disabilities, who by virtue of their need require more funds per person. That means once again lives are on the line. That means my life, and the lives of others in my community, are on the line. For people with disabilities on Medicaid, losing that coverage means risking life itself.
The services provided through Medicaid are what allow me to have basic medical equipment covered, such as my power chair. My power chair allows me to get out of bed in the morning. I use it as an indispensable tool for every task in my day, including for my job, my personal care needs, and socializing with friends. Medicaid coverage allows me to use local physical, occupational, and massage therapy resources to ensure that I can keep working. Through HCBS, I am able to hire my own personal care assistants and live in the community, rather than being institutionalized.
Emblematic of other highly rural parts of the nation, Maine—where I live—understands Medicaid’s critical importance. Maine has a higher percentage of people with disabilities than the national average, the largest percentage of elderly residents in the country, and a population that is particularly dependent on public health insurance. Altogether, more than 400,000 Mainers are currently covered under MaineCare, Maine’s name for its Medicaid program. Cuts to HCBS would likely mean a drastic reduction in the number of hours of services that people with disabilities would be able to receive, as well as a continued worsening of the care workforce shortage, for both paid and unpaid caregivers.
What It Took to Hold the Line on Health Care in 2017
In 2017, I was a year out of college, having moved to Washington, D.C. six months earlier for my first real-life job, working for the National Council on Independent Living. I was 22 years old, and the ACA had allowed me to stay covered under my parents insurance plan since my insurance choices through my new job weren’t great. That was also the year, however, that Congress and President Trump were threatening coverage of preexisting conditions. In the late spring of that year, I took the train back to my home state to have a candid (and potentially public) conversation with my local representatives on why disabled Mainers needed these health care protections, and how they made Maine a better place to live.
Also that year, alongside other activists, I engaged in nonviolent civil disobedience in our nation’s Capitol because the attempt to withdraw coverage of preexisting conditions was literally life threatening to our community. I risked arrest numerous other times in our nation’s Capitol, charged with obstructing and incommoding—in other words, crowding the Senate rotunda, but otherwise peacefully protesting. The activism by the disability community was successful in thwarting the repeal of the Affordable Care Act in 2017, with groups like ADAPT and Little Lobbyists influencing the deciding vote by Senator John McCain, himself a service-disabled veteran.
Why Health Coverage Matters to Mainers Like Me
There are no words that can stabilize the deja-vu effect this moment is having on mental health, the idea that we have been here before and fought this battle but are trapped in a Sisyphean effect, once again rolling a large rock uphill. I really don’t want to have to get arrested again in a post-insurrection society where the right to protest is called into question and presents a direct threat to self, and when Capitol police specifically are even more wary of demonstrations.
In the eight years since 2017, my personal health has diminished, making the coverage I receive under both private insurance and Medicaid more important than ever, but also making my body frailer and more susceptible to injury if needing to take or resist physical action. But whether or not I personally put myself in the breach, more Maine residents and people with disabilities across the country than ever are reliant on a program that is critical to their lives. For many, the stakes could not be higher, it’s literally life or death.
Tags: disability justice, medicaid cuts, beyond health
Beyond Health: What Cutting Medicaid Means for Disabled People, Including in Maine
This commentary is part of TCF’s Beyond Health series, which discusses the many potential harms of up to $880 billion in potential Medicaid cuts across issue areas.
Congress, in alliance with the Trump administration, is once again trying to create a post-apocalyptic Groundhog Day scenario when it comes to health care. Recently, the House-passed budget resolution has targeted funding that will likely come from Medicaid, in a situation eerily reminiscent of the attempt to repeal the Affordable Care Act (ACA) in 2017.
Fast forward to 2025, when House Republicans, with support from the Trump administration, have teed up $880 billion in cuts to the Medicaid program over ten years. Cuts of this magnitude cannot be achieved simply by promoting “efficiencies,” but rather would entail cutting support for a broad array of services that Medicaid provides—services reductions that could be life-threatening for people with disabilities.
Lives on the Line
Medicaid is the program responsible for, among others, providing 4.5 million people with home- and community-based services (HCBS). HCBS are, in short, the care services that provide people—whether they are older adults, people with intellectual or developmental disabilities, physical disabilities, or mental health and substance use disorders—with the ability to live independently or in the community, rather than be institutionalized.
For people with disabilities, the loss of HCBS can be particularly devastating. Whether it’s dressing or undressing, bathing and toileting, helping prepare meals, or facilitating medication, these forms of personal care are a key component of home care services covered under HCBS, and their reduction can be life-threatening. When hours to support disabled people are cut, their care attendant can’t come as much and help them to the bathroom. As a possible result, disabled people put themselves through significant discomfort and risk their internal health by rationing this care. For people with disabilities, cutbacks to care can lead to health problems that too frequently mushroom into a crisis. When people don’t have access to these services, their basic health can become endangered.
The Medicaid program also provides supports for those seeking employment, home-delivered meals, and nonmedical transportation, among other services critical to the health and well being of disabled persons.
By proposing deep cuts to Medicaid, Congress, aided and abetted by the Trump administration, has once again levied a great and terrible threat on the American people. For example, the House may seek to achieve cuts by capping funds to states or reducing their options to pay for their share of costs, forcing them to ration care to people with disabilities, who by virtue of their need require more funds per person. That means once again lives are on the line. That means my life, and the lives of others in my community, are on the line. For people with disabilities on Medicaid, losing that coverage means risking life itself.
The services provided through Medicaid are what allow me to have basic medical equipment covered, such as my power chair. My power chair allows me to get out of bed in the morning. I use it as an indispensable tool for every task in my day, including for my job, my personal care needs, and socializing with friends. Medicaid coverage allows me to use local physical, occupational, and massage therapy resources to ensure that I can keep working. Through HCBS, I am able to hire my own personal care assistants and live in the community, rather than being institutionalized.
Emblematic of other highly rural parts of the nation, Maine—where I live—understands Medicaid’s critical importance. Maine has a higher percentage of people with disabilities than the national average, the largest percentage of elderly residents in the country, and a population that is particularly dependent on public health insurance. Altogether, more than 400,000 Mainers are currently covered under MaineCare, Maine’s name for its Medicaid program. Cuts to HCBS would likely mean a drastic reduction in the number of hours of services that people with disabilities would be able to receive, as well as a continued worsening of the care workforce shortage, for both paid and unpaid caregivers.
What It Took to Hold the Line on Health Care in 2017
In 2017, I was a year out of college, having moved to Washington, D.C. six months earlier for my first real-life job, working for the National Council on Independent Living. I was 22 years old, and the ACA had allowed me to stay covered under my parents insurance plan since my insurance choices through my new job weren’t great. That was also the year, however, that Congress and President Trump were threatening coverage of preexisting conditions. In the late spring of that year, I took the train back to my home state to have a candid (and potentially public) conversation with my local representatives on why disabled Mainers needed these health care protections, and how they made Maine a better place to live.
Also that year, alongside other activists, I engaged in nonviolent civil disobedience in our nation’s Capitol because the attempt to withdraw coverage of preexisting conditions was literally life threatening to our community. I risked arrest numerous other times in our nation’s Capitol, charged with obstructing and incommoding—in other words, crowding the Senate rotunda, but otherwise peacefully protesting. The activism by the disability community was successful in thwarting the repeal of the Affordable Care Act in 2017, with groups like ADAPT and Little Lobbyists influencing the deciding vote by Senator John McCain, himself a service-disabled veteran.
Why Health Coverage Matters to Mainers Like Me
There are no words that can stabilize the deja-vu effect this moment is having on mental health, the idea that we have been here before and fought this battle but are trapped in a Sisyphean effect, once again rolling a large rock uphill. I really don’t want to have to get arrested again in a post-insurrection society where the right to protest is called into question and presents a direct threat to self, and when Capitol police specifically are even more wary of demonstrations.
In the eight years since 2017, my personal health has diminished, making the coverage I receive under both private insurance and Medicaid more important than ever, but also making my body frailer and more susceptible to injury if needing to take or resist physical action. But whether or not I personally put myself in the breach, more Maine residents and people with disabilities across the country than ever are reliant on a program that is critical to their lives. For many, the stakes could not be higher, it’s literally life or death.
Tags: disability justice, medicaid cuts, beyond health