Hutchinson woman’s struggle to navigate Minnesota’s Medicaid system highlights long wait for aid

HUTCHINSON, MINN. - Until two years ago, Kristen Ellingson was fit, active and had a good full-time job.

Not now.

Disabled with Lyme disease and preparing for surgery to repair damaged vertebrae in her neck, the Hutchinson woman struggles to pay for food, medicine and transportation.

She struggles, too, to make sense of a system in which her $16,000-a-year job pays too much to qualify for the help that would make life so much easier.

Ellingson’s disability qualifies her for “waiver services” to live better. But her income is about $100 a month too high to receive those services. And Ellingson said she can’t afford the $150 she’d have to “spend down” each month to get the services — not with rent of $965 a month and a lease too expensive to break.

“It’s just a frustrating process. It is so frustrating, and it’s fighting them and pulling teeth to get them to do anything,” said Ellingson, 48.

Untangling the myriad requirements for services is a common frustration for people too physically damaged to fully work — and yet not poor enough to fully tap state and federal assistance, advocates say. Not only is the system to qualify for Minnesota’s Medicaid program, called Medical Assistance, difficult to navigate for thousands of Minnesotans with disabilities, it can take years to qualify for the aid, which comes from both federal and state governments.

Minnesota is reworking its Medicaid waiver system, used by roughly 70,000 people with disabilities to cover vital services, to simplify it.

“Kristen is not unique. There are many in the same situation. Some got waivers. Some didn’t,” said Sandy Hruby, whose Hutchinson-based Parents Inspired connects people with a range of services. “Every single county is a little bit different. With many, if you don’t know what you’re looking for, they won’t tell you.”

In 2019, the Minnesota Star Tribune wrote about families forced to hire guides to navigate such services. Six years later, that need continues.

Kayla Bertrand, executive director of Minnesota Disability Support Alternatives, works to help people find other funding to stay in the community.

“It’s extremely common and it’s getting worse,” Bertrand said of waiver angst. “As more and more people learn about waiver services, the system is so bogged down at this point that they can wait a year to two years.”

While state and county officials acknowledge income and spend-down requirements can be daunting, help is out there. One place: Disability Hub MN, reachable by phone at 1-866-333-2466.

Berit Spors, McLeod County’s Health and Human Services director, said she can’t comment on Ellingson’s case. But, she said, “health care programs are very cumbersome, very complicated for our clients to understand.”

However, she said, McLeod County is not behind on its caseload.

“We have a full staff and financial assistance team,” Spors said. “And they process a lot of clients.”

So far, Ellingson said, she’s still waiting.

Her struggles began a couple years back, when she started losing her hair. Then, she started inexplicably gaining weight. She started falling.

The diagnoses: Lyme disease, severe stenosis, bulging disc disease and then autoimmune digestive issues stemming from the Lyme disease. A second fusion surgery for her neck is coming soon.

Limited to working part-time at a group home in Litchfield and, so far, unable to get full services, Ellingson has been forced to cobble together what resources she can.

She gets rides to medical appointments in the Twin Cities. And friends in town augment her food stamps with grocery contributions.

Ellingson said she’s told her county workers about the hard choices she’s had to make.

“A lot of times, I don’t eat‚” she said. “I can’t even make my co-pay for meds. And the county worker told me, ‘It’s not that bad.’ ”

As a result, Ellingson said she’s had to ration her medication.

“If it says take twice a day, I’m taking them once a day so that I can make them last longer,“ she said.

Yet, when Ellingson complained about not getting more help, she said her county caseworker told her she should “budget better” and move to a cheaper apartment. But breaking her lease would cost $3,000, Ellingson said.

Jean Mallory drives Ellingson to appointments and brings her groceries. They met last year during a food giveaway at their church.

“She’s honest, tough,” Mallory said of Ellingson. “But she’s tired. Worn out. She’s frustrated.”

Anne Karnik, too, has helped her friend with rides and groceries. They, too, met through a church program.

“She’s been through a lot,” Karnik said, noting that Ellingson has lost both her parents and has no relationship with other family members.

“She’s a fighter. But she truly needs help, there’s no doubt about it,” Karnik said.

Ellingson said she’s hopeful that her application for federal Social Security disability payments will be approved in the not-too-distant future.

Kelly Blad, with Disability Benefit Solutions, is an advocate for Ellingson’s federal disability claim. Blad said the process still could take another four to six months.

“My heart goes out to her,” Blad said of the struggle for state assistance. “I don’t know why she’s not receiving state services. She should be. The state process is cumbersome, just like the federal process is.”

On Feb. 14, Ellingson had a surgical procedure on her neck and was given restrictions, including no bending, twisting, or lifting anything heavier than a gallon of milk for at least six weeks.

And no work means even less money.

Two weeks ago, in an email to the Minnesota Star Tribune, Ellingson wrote that she hopes to bring attention to the difficulties accessing services for people with disabilities. She called it a “flawed and broken” system.

“All of this needs to be exposed,” she wrote. “And if speaking up means they give me a harder time, so be it. I don’t see how this could hurt my disability case, because these are real, systemic problems that affect countless people, not just me.”