A cancer survivor hoped to work — then she lost her Medicaid disability coverage

Taya Hailstone has been in remission from Hodgkin lymphoma for five years, but the cancer’s lasting damage to her organs and nerves can make basic tasks hard. Even so, Montana’s health department decided Hailstone is no longer eligible for low-cost disability health coverage through Medicaid.

Kyla Hailstone


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Kyla Hailstone

Taya Hailstone has been in remission from childhood Hodgkin lymphoma for five years. But the cancer’s lasting damage to her organs and nerves can make basic tasks, like loading a dishwasher, hard.

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Still, Montana’s health department decided last year that Hailstone is no longer eligible for low-cost disability health coverage through Medicaid. The department switched her coverage to the state’s Children’s Health Insurance Program, another Medicaid program — three months before she aged out.

Before making the decision, the state didn’t seek records from the medical team treating Hailstone, according to letters from those doctors reviewed by KFF Health News. Rather, the administrative ruling came after state officials learned the now-19-year-old had stopped receiving Social Security disability payments. She said she did that because she hoped to get healthy enough to work and save some money — beyond what’s allowed under the strict income caps tethered to those payments. But her health changes day to day, and she said for now she’s still too sick to consistently work.

Hailstone, who lives with her mom, has been able to keep Medicaid coverage while they appeal the case. She said that without Medicaid she can’t afford the treatment to manage the aftermath of her cancer.

“It feels like this process was made to make you give up,” Hailstone said.

Patients with disabilities have long struggled with administrative hoops, blunders and confusion when trying to qualify for federally subsidized health coverage because of their illness. Now, new federal Medicaid work requirements mean states face the additional task of deciding who qualifies for a medical exemption. That means reviewing medical cases for an even larger swath of Medicaid enrollees.

Attorneys, researchers and advocates who specialize in public aid said disability cases like Hailstone’s — though separate from the incoming work requirements — are an indication that states aren’t ready to decide who should be exempt from those requirements. As a result, they said, more people will be denied coverage in an opaque process.

“This will be the story of millions of people,” said Anthony Wright, who heads Families USA, a national nonprofit that advocates for ways to make healthcare more accessible.

Jon Ebelt, a spokesperson with the Montana Department of Public Health and Human Services, said the state doesn’t comment on individual Medicaid cases.

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