When your health plan goes away

MinnEcon note: For most of us, it's a hassle to change health plans or providers. For people with disabilities and limited incomes it can be a nightmare. Here's a post from MPR's Melody Ng.

What happens when your health care plan stops existing? You hope you're already enrolled in another one -- especially if you're someone with physical disabilities.

Two recent stories from Minnesotans in MPR's Public Insight Network show how changing plans can become a crisis for those who depend on them for medical care and services to live independently.

"Individuals experiencing disability, chronic illness ... rely on [their health plan], sometimes hour-to-hour, day-to-day. These are critically important life support, safety, and security pieces," Lance Hegland of Minneapolis told us.

Hegland, 38, has spinal muscular atrophy. He and 1,275 other Twin Cities adults with physical disabilities had to find new insurance plans after UCare decided to close its UCare Complete program, also known as Minnesota Disability Health Options (MnDHO), as of Dec. 31.

The plan was vital, unique among health care programs, because UCare collaborated with AXIS Healthcare to combine health care coordination with services for independent living. In doing so, MnDHO promoted preventative care, reduced hospitalizations and improved quality of life for people with disabilities.

But it was expensive.

UCare closed the plan reluctantly, concerned about future cuts in federal Medicare payments that "combined with state budget cuts and the uncertainty for future funding made the MnDHO program unsustainable for us to operate with the type of quality programming that we felt was required," said Ghita Worcester, UCare's senior vice president of public affairs and marketing.

UCare helped Hegland and others find alternatives. Worcester said about 1,200 enrollees managed this transition.

Others, though, are still looking for answers.

Johana Schwartz knows she has health insurance. What she doesn't know is who's providing it.

The 29-year-old from Inver Grove Heights chose and submitted paperwork for a new provider on Dec. 10. But she says no one's responded to her application or repeated phone calls.

So, she has no idea if she's now covered under the default plan UCare rolled undecided people into, or if she got the plan she asked for.

She's also unclear on her failing adaptive equipment needed for cerebral and speech disabilities.

Last week, her group home noticed her ankle braces were coming unraveled. She needs a new battery for her speech communications device as well. A few weeks ago, she got the requisite doctor's prescription and ordered the battery, but it wasn't processed in time. Now Schwartz must wait for her new plan to kick in -- whatever plan that is.

She described her situation as, "Scrambling... Crazy enough without holiday business hours interrupting. Franz Kafka's bureaucratic chaos."

Hegland has health insurance under control. His transition to a new plan using AXIS Healthcare was "fairly seamless." But MnDHO's closure was hard on him, too.

"The initial uncertainty and impact of change created tremendous anxiety, fear and frustration for many people in our community," he said.

In a surprising twist, after nearly a year of researching insurance plans and stressing over his future without AXIS (he credits AXIS for motivating him to see his primary care doctor regularly and helping him participate actively in community life), Hegland still has AXIS coordinating his daily care.

His new insurance provider recently contracted AXIS to manage home- and community-based services. In the shuffle, though, Hegland lost the coordinator who's managed his care since 2005.

So he's relieved, but frustrated, too.

"Many of us are right back where we started ... yet we invested a lot of resources over the past year to pull off this transition."

He's not talking about just his own resources; he's concerned about taxpayer money spent and wondering what notes we should be taking to manage health care and other services for aging Baby Boomers.

AXIS executive director Randy Bachman says the Minnesota Disability Health Options model was "ahead of its time," and did a lot of good for many people. He believes with health care reform the model will reemerge.

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If you were part of the MnDHO / UCare Complete plan or know someone who was, share some insights and help us add to these stories.

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