Going without prescriptions for months. No longer being able to afford in-home care. Showing up for scheduled exams or dental appointments only to learn they no longer had insurance. Racking up steep out-of-pocket bills to remain in the nursing homes where they've lived for years. These are stories Marcy Brookie has heard time and time again over the last year from seniors who lost Medicaid coverage during the redetermination process.

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As program director for a nonprofit in Roundup that serves aging adults and people with disabilities, Brookie and the staff at Area II Agency on Aging are often the first point of contact for seniors with health concerns in the community. Area II Agency on Aging is one of nine nonprofit sites across the state that receives public dollars to refer seniors to nearby service providers, help them navigate benefits and provide direct in-home care.

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Unwinding — a national requirement that state health agencies redetermine the eligibility for Medicaid beneficiaries after a three-year pause during the pandemic — has been the main worry for many of the seniors that walk through Area II's doors since April 2023 when the process began. A small team there has supported more than 500 individuals, mostly seniors, attempting to reapply for the insurance program. Some experienced lapses in coverage, or were told they didn't provide the requested information so they lost it altogether. Others remain in limbo, waiting to hear about their applications and overwhelmed by the process.

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Perhaps the most difficult part, Brookie says, has been bearing witness to the emotional distress redetermination has created for aging Montanans, many of whom have already endured a lifetime of worry.

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"They feel like throwaways," Brookie said. "They feel like they're not not honored, respected individuals anymore. And for that generation, it's hard to ask for help anyway because of their pride."

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How many seniors lost Medicaid?

Adults over the age of 65 with low incomes are eligible for both Medicare, the federal health insurance program for seniors and adults, and Medicaid, the joint federal-state coverage primarily for low-income people. Nationally, about 7.2 million people are enrolled in both.

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Seniors accounted for only 5% of Montana Medicaid's total enrollment before redetermination, according to the latest Montana Healthcare Foundation report. But they were responsible for 13% of the state's total Medicaid expenditures. Seniors are more likely to rely on the insurance plan for costly long-term support services excluded from Medicare that they couldn't afford otherwise, such as nursing homes, assisted living facilities and homebased care. Losing that insurance coverage can be devastating.

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"Unless you are extremely wealthy, if you need skilled nursing care for very long at all, you will burn through whatever assets you have accumulated in a lifetime of work very quickly," said Margie MacDonald, executive director of Big Sky 55+, a nonprofit that advocates for aging adults.

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Although seniors already enrolled in Medicaid were unlikely to have had their incomes change over the last three years, the Montana Department of Public Health and Human Services, which sets the terms for re-enrollment and oversees the eligibility process, required most everyone to reapply.

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People paying for their nursing homes using Medicaid, for example, had to endure the same laborious paperwork and telephone help line delays as anyone else.

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DPHHS doesn't publish redetermination numbers by age, so there's no exact way to know how many seniors have lost their Medicaid coverage through unwinding. But, as of February, there were 8,573 Montanans 65 years old or above who were enrolled in both Medicare and Medicaid, down by double digit percentages from April 2023.

 

Fluctuations in Medicare enrollment — which happens through the federal government — could influence this figure, not exclusively Medicaid redetermination changes, as Jon Ebelt, DPHHS spokesperson, points out. That said, federal data shows the number of Montanans enrolled in Medicare has steadily increased in recent years.

 

Facilities that serve seniors experiencing financial strain

Throughout redetermination, many health care providers across Montana report losing heaps of money as they've continued to provide care for people with uncertain coverage statuses. The same is true for nursing homes, assisted living facilities and other organizations that provide community or home-based care to seniors.

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DPHHS data shows that of the roughly 134,000 people who had been told they would no longer be covered by Medicaid as of April 26, over 63% lost insurance because they failed to provide the requested information. Nearly 31% were determined ineligible based on program standards.

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According to Ebelt, the health department added additional staffing to two units focused on supporting senior and longer-term care facilities, sent emails and letters to nursing homes and assisted living providers about the unwinding process and hosted webinars to give instructions on what to expect.

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But Brookie, MacDonald and others who watched the process unfold firsthand said seniors were asked to wait on the phone for hours before connecting with a person, received eligibility letters informing them of a response deadline that had already passed or couldn't understand how they were supposed to navigate the process.

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"They are getting services because they are compromised and challenged," MacDonald said. "That is precisely who gets caught in the bureaucratic trap."

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A common story has unfolded across the state: facilities are hesitant to stop providing health care to patients they have reason to believe are still eligible for Medicaid. Providers continue offering services but don't receive reimbursement payments on a normal schedule, dragging their budgets into the red.

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RiverStone Health, a large community health clinic in Billings, announced earlier this month it would lay off 29 employees in order to recoup $3 million in losses it attributes largely to uncompensated care during the redetermination period.

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For health care providers serving seniors, the consequences of withholding care can feel exceptional.

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Rose Hughes, executive director of the Montana Health Care Association, said a count among 21 of the nearly 50-member nursing homes revealed they were a collective $8.5 million in debt due to outstanding Medicaid payments for patients dealing with delayed applications or coverage loss.

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"I have no reason to believe that if you look at another 21 facilities things will be any different," Hughes said. "I think when folks don't respond it's just that they don't have time. They are up to their eyeballs in many things."

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There are 114 patients at these nursing homes who were booted from Medicaid, but have reapplied and are waiting to hear back. Another 173 residents are waiting to hear back on new applications. Hughes said facilities are waiting up to six months for decisions.

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Brookie said her organization, Area II Agency on Aging, has been "eating money," unable to bill Medicaid, but equally unwilling to halt care.

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DPHHS says it will retroactively reimburse facilities for up to three months from the date of application should a person who lost Medicaid be determined eligible to re-enroll. Ebelt said a common misconception is that coverage is only retroactive from the point a determination is made, but that facilities might be able to get reimbursed for longer periods than they realize.

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"Through this process, DPHHS has ensured that the safety net doesn't collapse and remains available for our state's most vulnerable residents, while also protecting taxpayer-funded programs from intentional or unintentional abuse," DPHHS Director Charlie Brereton said in an emailed statement.

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Still, providers have to foot the bill in the meantime. Many, especially smaller organizations or those in rural areas, don't have the ability to pay out large unexpected sums on shoestring budgets. They're faced with the impossible decision of continuing to provide essential health care for the seniors who need it now or risk the future viability of the facility if the money runs out.

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"There is the human crisis of knowing that this person who you are caring for and not being paid for cannot be moved," MacDonald said. "So many of these facilities were literally on the margins of survival (...) they aren't just jeopardizing the particular individual to be cared for in a safe, supportive environment, they are jeopardizing that entire environment for that entire community."

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Nursing homes have faced an uphill battle for survival in recent years.

At least 11 nursing homes closed in Montana between 2021 and 2023, according to reporting from the Montana Free Press, citing a deepening budget crisis. During the 2023 session, the Legislature passed reimbursement rate increases for facilities providing services to Medicaid patients. Nursing homes went from being reimbursed $212 a day for residential care provided to Medicaid patients to $261.26. They are set to receive another increase effective July 1 to $278 per day.

Hughes says the financial situation going into redetermination was much better than it had been previously, but she's hearing from nursing homes and assisted living facilities alike that it won't be enough to close the gaps left behind by unwinding.

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"They don't see any relief in sight," she said. "They want to know when it's going to end, and there are no answers to that question. They definitely seem like they're getting to a breaking point."

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Burnout and emotional toll

The effects of Medicaid unwinding have reverberated far beyond budget spreadsheets.

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Multiple administrators from health care facilities that serve seniors told the Montana State News Bureau redetermination demanded their organization's primary focus for the better part of the last year.

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"It took both a physical and mental toll on the staff," Brookie said. "They were the ones dealing with the stories, the anger and the frustration of trying to help these individuals and the lack of the ability to do so."

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Kim Winchell is a benefits enrollment specialist at Glacier Community Health Center in Cut Bank. She said what she's long loved most about her job was helping people get what they need. Securing health insurance through Medicaid, for example, can be life-changing for a family struggling to get by.

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Throughout the unwinding period, Winchell said she's felt increasingly unable to support patients who have lost insurance or don't know where they stand with their coverage. She's seen parents desperate to make sure their kids have insurance, but can offer very little help in making it happen.

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"I don't know what else to do," she said. "I just end up apologizing a lot."

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And then there are the seniors themselves. They are former ranchers and public school teachers, nurses and shopkeepers. Many have spent decades in these same communities.

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Uncertainty around basic needs like health care and, in the case of aging adults residing in assisted living facilities, where they can live has caused immeasurable worry and stress for some of society's most vulnerable, according to MacDonald. They're left bewildered as to what they did to end up here.

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"It's hard to accept. It's really painful," she said. "That's all many of us have left, really, is our pride, and this is an affront to that."

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Carly Graf is the State Bureau healthcare reporter for Lee Montana.​