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.

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 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........

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