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.
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