Medicaid Cuts Will Devastate People with Disabilities and Their Communities

Two months ago, Sloan Meek – a disability rights advocate with cerebral palsy – took the stage at a rally protesting the Medicaid cuts in Trump’s so-called “Big Beautiful Bill.” Meek warned how $1 trillion dollars in Medicaid cuts would have life-threatening consequences for people with disabilities. 

“My whole life – not just my healthcare – is supported by Medicaid. The way I move around in the world. The way I communicate. The people who help me do all the things I want to do in my life,” Meek said. “Without Medicaid support, I will be forced into a nursing home to spend the rest of my life in a hospital bed.” 

The Republican budget is a “death threat” to people with disabilities, Meek said. 

It draws a clear line between those in this country who are deserving of protection and public investment, and those who are not. While corporations and the ultra wealthy are afforded millions in tax breaks disabled people and caregivers are neglected, defunded, and treated as disposable.

The North Street Neighborhood 

In a joint interview, Meek, his at-home caregiver Wendy Lincicome, and his bandmate, friend, and fellow disability-rights activist Suvya Carroll spoke with both anger and fear about how Medicaid cuts will uproot them from their community in Durham, North Carolina. 

The three live in the North Street Neighborhood, a community that describes itself as “an organic network of relationships.” North Street is actively reimagining what it means to build a neighborhood rooted in disability justice and collective care. Home to over 100 residents — including roughly 30 people with disabilities — it brings renters, homeowners, university students, and families into a space designed to foster inclusion, accessibility, and interdependence between disabled and non-disabled residents.

For Meek and Carroll, who also has cerebral palsy, North Street is a home where they can show up as active community members. They serve on the neighborhood residents’ council, deliver newspapers, and perform concerts with their band, Meek Squad. Meek also proudly proclaims himself host of North Street’s infamous party house. 

For Carroll, North Street is a place she can show up as her authentic self and trust her neighbors to support her with her disabilities. Both she and Lincicome talk about how the community creates long-lasting relationships between residents, allowing able-bodied residents to knowledgeably and empathetically show up and serve their neighbors with disabilities. 

“They’re our friends, they’re our neighbors,” Lincicome says. Thanks to Medicaid funding, those same neighbors can also be trained and paid caregivers, supporting Meek and Lincicome with tasks like lifting him into his wheelchair-accessible van, assisting with medications, and helping him communicate. These responsibilities require specialized skills, and receiving expert care from people who truly know and care for them, just next door, is a rare experience.

Lincicome describes North Street’s ecosystem of care as a rare oasis in a world that often isolates and erases people with disabilities and their caregivers. Instead, their community members understand what life is like for an at-home caregiver and a person with a significant disability. That understanding, explains Linciome, ensures that, “our world doesn’t close into the size of the four walls of our home. Our world is much bigger.”  

However, for residents like Meek, Carroll, and Lincicome, living in North Street would not be possible without Medicaid funding. 

Medicaid as a lifeline

Medicaid pays for Meek’s home and community supports, including Lincicome, who’s been a caretaker in his life for 31 years. They first met when Meek was just six years old and Lincicome was in college. Lincicome assisted Meek and his family until, as an adult, Meek moved in with her as his full-time at-home caregiver.  

The rest of Meek’s medical services are sustained by a patchwork of health insurance. Contributions from Social Security Income (SSI), Medicaid, and Medicare are still not enough to cover all of Meek’s medical costs. Meek’s wheelchair, equipped with a computer communication device, his prescriptions, multiple specialists, and full-time caregiving needs are expensive. While Medicaid has been vital, it’s never been enough by itself and is difficult to access.

Lincicome says they’re lucky. Meek’s family has the financial resources to help fill in the gaps, something many people with disabilities don’t have. 

Carroll, who was arrested for protesting Trump’s budget bill in June, also relies on Medicaid. She shares that without the same financial resources, she’s often been left to navigate inaccessible and complex healthcare systems alone. For example, three years after receiving a power assist for her manual wheelchair, she was suddenly billed $6,000 because her Medicaid “wasn’t properly authorized.” After days of phone calls with uncooperative insurance reps, the charge was finally dropped and the device covered. Jumping through constant hoops to receive adequate health insurance for her disability is exhausting for Carroll, and requires additional advocates in her life to help navigate not only daily tasks, but hostile healthcare structures. 

Medicaid needed improvements, not cuts, says Lincicome. “We’re not rolling around in benefits. It doesn’t cover everything. It’s really hard to navigate and to access. There are so many rules that seem to contradict each other and have kinds of discrimination built into it.” 

Carroll recently found a caregiver covered by Medicaid. Her caregiver assists with tasks like cooking, cleaning, managing medications, and most importantly, advocating alongside her at medical appointments. Previously, Carroll leaned on friends at North Street for support, but ultimately needed the consistent, specialized care that long-term at-home caretakers provide to people with disabilities. 

Although Medicaid – like any health insurance in this country – is confusing and hard to access, it’s the only healthcare Carroll has to support vital medical services. 

Medicaid cuts threaten HCBS programs

Carroll and Meek are not alone. More than 1 in 5 Medicaid enrollees have a disability. And nearly half of Medicaid enrollees with a disability have difficulties living independently and require long-term at-home care. Today there’s roughly 6 million people who use Medicaid for long-term direct care support and more than 700,000 people currently on a Medicaid waiver waiting list to receive home and community based services (HCBS). 

At-home caregivers are paid through Medicaid’s HCBS waiver program. Medicaid is the primary payer for caregivers like Lincicome because other forms of health insurance typically do not cover long-term at-home care costs. But chronic underinvestment in federal Medicaid funding has contributed to low wages for caregivers and a disproportionate number of care workers also relying on Medicaid for their own healthcare. Wages for home caregivers puts them in the bottom 10 percent of lowest paid workers in the US economy. 

Lincicome explains that she’s severely underpaid for the work she does. Through the HCBS waiver program, she’s paid an hourly rate based on an eight-hour workday, an assumption that doesn’t reflect the reality of her role. As an at-home caregiver, she often works up to 20 hours a day, effectively earning less than $10 an hour for around-the-clock labor. 

Low wages and strenuous labor leads to high turnover rates in the industry, which in turn causes dangerous working conditions and a shortage of direct care workers available to provide life-giving support to people with disabilities. 

This crisis is especially acute as the demand for caregivers in the US is increasing. By 2040, more than one in five people in the United States will likely need the aging and disability support direct care workers provide. 

Beyond standard medical care, Lincicome’s role as a caregiver gives Meek agency and voice. Meek is an active organizer in his community. With Carroll, he speaks with medical students and doctors about the importance of friendship, social connection, and truly listening to patients with disabilities. He’s worked with the city government. He teaches his friends how to be advocates for themselves and others. And he always makes sure he gets his friends out to the voting polls during elections. “To do all this important work,” Meek says, “I need assistance.” 

Without Lincicome, Carroll says, the life she and Meek have built at North Street would not be possible. Lincicome isn’t just a caregiver. In her emails, she signs off as their “logistics manager” and “social secretary,” titles that reflect the many roles she plays. She’s crucial in making it possible for Meek and Carroll to safely travel to Washington, D.C. to protest Medicaid cuts, speak at universities about disability rights, and perform live with their band, Meek Squad.

But fair compensation for caregivers, as well as  dignified and quality care for people with disabilities, is hard to find, says Lincicome. And it is only going to become more challenging and complicated to access with Medicaid cuts. 

HCBS programs are considered “optional” Medicaid services and will likely be some of the first programs on the chopping block under Republican-led budget cuts. This will lead to the elimination of many at-home caregiver positions and decrease already under-funded wages for caregivers.

But these Medicaid services aren’t “optional”. Lincicome and Meek are a clear example of how Lincicome’s work is absolutely vital is Meek’s ability to live a full and meaningful life. Cutting Medicaid funding takes away the ability of millions of people with disabilities to live in their home and community.

Gutting ACA expansion and strict job requirements targets people with disabilities

In addition to stripping away HCBS programs, the so-called “Big Beautiful Bill” also attacks Medicaid expansion and imposes strict job requirements that endanger millions of disabled folks. 

In North Carolina, where Meek, Carroll, and Lincicome live, 660,000 people became eligible for Medicaid through the recent 2023 expansion. The expansion has been monumental for low-income people and individuals with disabilities. 

In the U.S., qualifying for disability-based Medicaid and other governmental support is extremely difficult. Nearly two-thirds of non-elderly adults with disabilities on Medicaid don’t receive SSI, meaning they qualify instead through low income. Thanks to Medicaid expansion, millions more disabled people have access to healthcare because ACA expansion lowers the income threshold eligible for Medicaid. As experts note, expansion has been critical in giving people with disabilities access to care without having to meet strict federal disability criteria. 

Trump’s budget bill takes away $526 billion from  states who have adopted ACA expansion. North Carolina has trigger laws in place that stipulate if enough federal funds are stripped away from the expansion program, it will shut down all together. This would leave hundreds of thousands of people without healthcare coverage in North Carolina. 

In addition to gutting Medicaid ACA expansion, the budget bill requires Medicaid expansion enrollees to meet harsh work requirements or prove they meet eligibility criteria. This is particularly dangerous for people with disabilities. 

In the Republican budget bill, Medicaid enrollees will be required to redetermine eligibility twice a year instead of annually starting in December 2026. Studies show that people with disabilities, who already require caregiving support to cook and clean, are particularly vulnerable to these work requirements. 

We’ve already seen how job requirements will strip people of essential healthcare. For example, in 2018, Arkansas implemented similar Medicaid work requirements, which caused 18,000 people to lose their health coverage. Yet 95 percent of those who were required to redetermine their eligibility through work requirements appeared to have met and qualified for Medicaid. Put simply, even though people qualified for Medicaid, work requirements created walls of red tape “churning” people off their health insurance. 

Rather than protect against “waste, fraud, and abuse,” this budget bill merely exacerbates obstacles, seas of red tape, and unintelligible Frankenstein healthcare policies.

“We want our lawmakers to make the right and moral choices with their vote,” Meek says, and “not take away the support people depend on, our voices, or our lives.”

Lawmakers are “taking away from low income families and people with disabilities for what?” asks Carroll. 

The answer: Trump’s administration is here to serve the wealthy-elite, not the regular working-class Americans and people with disabilities who rely on Medicaid. 

These Medicaid cuts should not be ignored because it’s going to hurt people like Meek, Carroll, and Lincicome. It’s time to get loud and get to work, says Carroll.