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What will be?: Proposed Medicaid changes worry the vulnerable in DL

Lamplighter resident Sherry Lawrence, who has a rare genetic disease, is enjoying life after a double-lung transplant a year ago. Meagan Pittelko/Tribune1 / 2
Lamplighter resident David Karkinen has advanced muscular dystrophy and worries about losing medical and personal care help he receives through Medicaid. Meagan Pittelko/Tribune2 / 2

The proposed Senate version of the American Health Care Act (designed to replace Obamacare) would end Medicaid as we know it, by capping it and gradually passing more of the cost burden onto the states and individual patients.

Medicaid provides health insurance to low income and disabled people (64 percent of nursing home residents, 76 percent of all poor children, 30 percent of all adults with disabilities) and the possibility of cuts has a lot of people who depend on the federal program worried.

"I think people hear the word Medicaid and they either confuse it with Medicare (for the elderly) or they think it is for people who don't want to work," said Pam Wellman, HUD Service Coordinator at Ecumen's 65-apartment Lamplighter Manor in Detroit Lakes.

"Not only would Medicaid cuts hurt nursing home residents, it would also affect the elderly and disabled who are living independently," she said. "A nursing home may not be an option, if their funding is getting cut as well. So who is going to take care of these people? Are the families going to be responsible? And what happens if they don't have families?"

Lamplighter Manor provides subsidized independent housing for seniors and those with disabilities. "Several of our residents are currently on an Elderly Waiver (which uses Medicaid funds)," she added. "Through the waiver they can receive help with anything from medication assistance, meals, laundry, housekeeping, diabetic monitoring, and shopping, to name a few. Without this help they would no longer be able to live independently in their own homes."

Not only would it impact Lamplighter residents, she said, but "it would be devastating to the residents at Pleasant View and Park Manor (in Detroit Lakes.) There are also people in their private homes who are getting assistance. If funds are cut, it's not like even if they wanted to, an 80-year-old can go out and find a job to supplement their Social Security."

Lamplighter resident David Karkinen, 57, is as mentally sharp as anybody.

Until a few years ago, he lived in the Twin Cities, had a wheelchair-accessible vehicle and drove himself around, and had hobbies he loved, such as flying model airplanes. He moved into the Lamplighter in 2013, and recently saved for a year to buy a drone, but has been too exhausted to fly it.

Since muscular dystrophy has laid waste to his body, he requires essentially 24-hour one-on-one care, which Medicaid provides through Essentia St. Mary's home health services.

"I'd wind up in a nursing home without it," he said. Last year he broke his leg and was in a nursing home for the summer. "I lived that life,' he said."The staff is overworked, they're always going from one room to the next, with only a few minutes with you ... Battling this muscular dystrophy I have, I'm barely dealing with it even with the level of care I have (22 hours a day). If I end up in a nursing home, obviously I wouldn't last very long. It scares the heck out of me, the stuff I'm seeing on the news. It's bizarre. It's crazy."

His mother, who also lives at Lamplighter, is worried for him, and for another son, who lives in a group home in Fergus Falls and would also be affected by Medicaid changes.

"I thought we had a good safety net so people like me wouldn't need to worry," Karkinen said. "So I'm very concerned. I don't know what's going to happen to me ... I have a clear mind, I know what's going on. It's just this disease I have is making my body disintegrate."

Sherry Lawrence, 65, has lived at the Lamplighter for four years. She had a double-lung transplant a year ago at the University of Minnesota hospital after being diagnosed with Alpha-1 antitrypsin deficiency, a rare genetic disorder that is passed on in families and affects the lungs. Medicaid (and after she turned 65, Medicare) paid for medical and personal services she needed to survive, both before and after the transplant.

"Any transplant patient has to take transplant drugs the rest of their lives," she said. Medicaid staff seemed to understand her medication requirements much better than private insurance, which she said tried to take her off the transplant drugs.

The transplant was a success, though it's been a long road to recovery. Now she's on the mend and feeling good about life.

"I'm trying this month without (personal care) services, to see how I do. I had a lot of services," she said. "My breathing is 98-100 percent room air, I don't need oxygen anymore. Now that I can walk, I just feel so free, so happy."