Utah’s Waiver Comments Expose Barriers to Coverage for People with Disabilities
For too many people with disabilities, access to health care is contingent on where we live. Without Medicaid expansion, it is incredibly difficult for disabled people to prove that they are disabled enough to be eligible for the low-income program. This leaves countless Americans with physical and mental health issues locked out of Medicaid in non-expansion states, scrambling to make do without the treatment they need. The result is mounting debt, worsening symptoms and difficulty maintaining employment.
I would know. I spent six years disabled and uninsured, falling into what was known as Utah’s “coverage gap” – the space between eligibility for Medicaid and eligibility for subsidies on the ACA Marketplace. After a car accident, I developed a whirlwind of debilitating symptoms: widespread pain, weakness and difficulty walking, tremors, severe daily migraines and more. Just as I was beginning to tackle a long list of tests, scans and specialists – I lost my job, and therefore, my health insurance.
I researched my options and found that Medicaid covered people with disabilities. How perfect, I thought. At that point I was using a wheelchair, and nearly bedridden. I certainly fit the “disabled” label. However, I quickly learned that disabled in daily life is not the same as the government definition of disability. In order to qualify for Medicaid, I would need to be recognized as disabled by the Social Security Administration or prove to a Disability Review Board that I meet the disability requirement. But gaining official recognition of disability meant having documentation, and having documentation meant needing to see the specialists and undergo the tests I had planned before losing insurance. There was no way I could pay thousands of dollars out of pocket, and free clinics only sent me to emergency departments, which sent me home untouched. It was a trap. I needed access to health care to obtain documentation to prove I needed access to health care.
Medicaid expansion is often described as extending benefits to “able-bodied adults,” but the definition of able-bodied is political, not medical. By removing that arbitrary divide and eliminating the disability-documentation paperwork barriers in the eligibility process, Medicaid expansion has provided a pathway to care for millions of people with disabilities.
“The people who often need Medicaid are the people who can’t work because of their sickness. Medicaid was built to help people that have already been set back by sickness and pain. Don’t leave us behind further.”
“Reporting requirements are onerous for participants, especially for those living in areas where work is scarce. Individuals with disabilities need to find work that can meet their capabilities and accessibility needs which limits their pool of employers.”
“With people who have health challenges, or are otherwise vulnerable, navigating red tape and bureaucracies can be life threatening — not just inconvenient.”
Other commenters shared personal stories of disability and illness and the need for access to Medicaid without additional barriers:
“I am a chronically ill woman in my late thirties who has lacked health care coverage for over a decade. My undiagnosed illness has taken any real quality of life from me, a thing that has taken its toll on my mental health and my confidence. With the Medicaid expansion, I have been able to obtain insurance coverage so that I can begin seeing more specialized doctors who may be able to help me find out what’s wrong–and get my life back on track so that I can be a productive member of society again.”
“I am unable to work because of my disabilities, and I don’t have the energy to fill out additional paperwork – I wouldn’t be covered because I couldn’t fill out paperwork.”
It is difficult to understand how elected officials can ignore the combination of powerful personal stories and mountains of data showing that Medicaid expansion is a one of the most significant health policy advancements in history for disabled people with chronic physical and mental illness. My experience in the coverage gap showed me that navigating the maze of illness and poverty is overwhelming enough without added paperwork requirements in the way of health care. We know that barrier-free Medicaid expansion saves lives and provides a bridge to employment. We can’t afford to go backwards.
Stacy Stanford is the Health Policy Analyst at the Utah Health Policy Project. Her focus is on healthcare access through a disability rights lens, and she has been an active advocate for patients and consumers for over a decade.