CW: Cancer
At the age of ten, Taya Hailstone was diagnosed with cancer. Taya Hailstone survived Hodgkin lymphoma. The treatments that saved her life left lasting damage. At 19, she still lives with health problems. Despite her ongoing health problems, she has to prove that she is still a disabled person who qualifies for the Medicaid coverage she desperately needs.
Hailstone’s story explores a reality that many disabled people know well. Many disabilities can affect someone differently every day. A disabled person with multiple sclerosis might go to a family gathering one day and then stay in bed the next. Somebody with long COVID may be able to get out of bed for a few minutes but then experience fatigue. A cancer survivor may still struggle with pain, fatigue, brain fog, or organ damage. These experiences do not match government rules about who can and cannot work.
As a disabled person with cerebral palsy, Medicaid is much more than health insurance to me. It is what allows me to live in my own home instead of a nursing home or other institution. It funds the personal care assistant hours I depend on every day. Without that support, my independence would be at risk. For many disabled people, Medicaid is not simply a healthcare program. It is the backbone of our lives.
That is why Medicaid work requirements raise serious concerns. Supporters argue that work requirements encourage employment, but experience has shown otherwise. When Arkansas implemented Medicaid work requirements in 2018, more than 62,000 people were required to comply with the new rules. By the end of the year, more than 18,000 had lost coverage.
Many eligible people become uninsured because of paperwork requirements, reporting systems, and administrative barriers rather than a lack of work. Research found little evidence that work requirements significantly increased employment.
Disabled people understand how easily bureaucratic hurdles can become barriers to care. Navigating bureaucracy often means gathering medical records, completing forms, responding to notices, and enduring lengthy review processes. Although some disabled people may qualify for exemptions, they might struggle to successfully navigate the system.
For many disabled people, losing Medicaid means far more than losing insurance coverage. It can mean losing home healthcare services, therapies, medications, transportation assistance, wheelchair repairs, and other supports that make living possible. These home and community-based services allow disabled people to work, attend school, volunteer, raise families, and participate fully in their communities.
Yet access to these services is already limited across the country. Hundreds of thousands of disabled people remain on waiting lists for home and community-based services, often for years. Families are left in limbo while trying to meet significant support needs on their own. Some parents spend years fighting for services their children have already been determined to need, while others struggle to keep loved ones at home without adequate assistance.
These waiting lists expose a reality that policymakers often ignore. The biggest barrier for many disabled people is not a lack of willingness to work or participate in their communities. There is a lack of access to the support that makes participation possible.
Removing those supports does not make disability disappear. It does not improve health. It does not make employment easier. In many cases, it does the opposite by taking away the resources that made independence possible in the first place. Without adequate support, manageable conditions can become crises, independence can erode, and community participation can become impossible.
Rather than adding new layers of paperwork and administrative requirements, policymakers should focus on meaningful reform. That means reducing home and community-based service waiting lists, strengthening Medicaid, simplifying eligibility processes, and ensuring disabled people can access the personal care services, transportation, assistive technology, and healthcare they need.
Surviving a serious illness or living with a disability is a challenge, but survival is not the end of the story. For many disabled people, the challenge is not only staying alive. It is accessing the support that makes it possible to truly live.
Sources:
Burns, Alice, et al. “A Look at Waiting Lists for Medicaid Home- and Community-Based Services from 2016 to 2025.” KFF, 20 Nov. 2025, www.kff.org/medicaid/a-look-at-waiting-lists-for-medicaid-home-and-community-based-services-from-2016-to-2025/.
Froelich, Jacqueline. “In Arkansas, Thousands of People Have Lost Medicaid Coverage over New Work Rule.” NPR, 18 Feb. 2019, www.npr.org/sections/health-shots/2019/02/18/694504586/in-arkansas-thousands-of-people-have-lost-medicaid-coverage-over-new-work-rule.
Goldsmith, Eloise. “Medicaid Work Requirements Could Boot 36 Million People off Their Health Coverage: Report.” Common Dreams, 7 Feb. 2025, www.commondreams.org/news/republicans-work-requirements-36-million.
Houghton, Katheryn. “A Cancer Survivor Hoped to Work — Then She Lost Her Medicaid Disability Coverage.” KFF Health News, 15 Sept. 2026, kffhealthnews.org/medicaid/disability-medicaid-work-requirements-cancer-state-reviews-montana/.
Patarcity, Ryan. “Arkansas Parents Call for Action on Disability Waiver Waitlist.” 5NEWS, 16 Sept. 2026, www.5newsonline.com/article/news/health/arkansas-parents-call-action-disability-waiver-waitlist/527-5d8feedf-7e07-4f9b-8120-19905bc7af29.