Whitney Lee: Fighting to Keep Health Care in a System Full of Barriers

Whitney Lee is a disability rights and mental health consultant in Utah who focuses specifically on autism. They participate in research studies on autism and suicide and have assisted researchers studying Medicaid recipients.

Whitney has relied on Medicaid for about five or six years in addition to being covered under their parent’s insurance plan. Medicaid helps cover the remaining medical costs that would be over one hundred dollars or more. They described the Medicaid application process as challenging, saying, “No one teaches you how to get Medicaid.” They highlighted the ongoing difficulty of not just getting enrolled, but staying enrolled, especially with the requirement to prove eligibility every six months and the temporary work requirements Utah considered before the COVID-19 pandemic. Utah added a work requirement to Medicaid in January 2020, but the work requirement was suspended as of April 2020, due to the COVID-19 pandemic, and then permanently revoked by the Biden Administration in 2021.

Whitney is covered under the adult Medicaid expansion population not disability Medicaid because the process for both certifying a disability and having that disability be accepted can be arduous. As a result, Whitney was subject to Utah’s work requirements in 2020. Whitney applied for an exemption from the requirement, but that request was rejected, and, to this day, that decision is “still confusing.” They appealed the decision and were able regain stable coverage during the pandemic.

During the unwinding period after the COVID pandemic, Whitney experienced a temporary loss of Medicaid coverage. “I lost it for a few months, maybe I think two months. I tried it once, as soon as I noticed, I made sure to get back on it.” They described this period as stressful, sharing that the lack of communication left them uncertain about their coverage and forced them to postpone care and handle unexpected medical bills.

Medicaid plays a critical role in Whitney’s daily life. Beyond their medications, they rely on it to cover essential medical equipment, including rentals for their CPAP and oxygen machine. They said that disruption to benefits could be dire, “My ability to afford to breathe would be jeopardized. I don’t know what would happen. I really don’t like to think about it. Because it’s just too scary, because I know I can’t afford it without Medicaid.”

Losing coverage would also impact their parents, who would face greater financial responsibility. “Which I know is not something my parents ever planned on,” they said. “Without Medicaid,” they shared, “I wouldn’t be able to afford [coverage] and my parents wouldn’t be able to afford my health care costs that come with being chronically ill. Because their insurance has a high deductible… Medicaid covers that remainder, and it covers my meds, I take quite a bit of medications every month.”

Currently, Utah plans to implement work requirements for Medicaid again. This would force Whitney to regularly re-prove their disability. They recalled a time when they were initially denied their work exemption and said that “work requirements end up harming disabled people because the paperwork is often inaccessible.” In addition to accessibility issues, Whitney notes, “even for working people on Medicaid, you know, it feels really intrusive having your boss know that you’re on government insurance or Medicaid, especially considering the stigma in the state. It puts people in a very vulnerable position.” They worry about changes to requirements and their potential impact on coverage in Utah and nationwide.