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The disabled community has been freaked out by the health-care debate 

On Wednesday, March 22, Patricia Yeager, CEO of the local disability nonprofit the Independence Center, held a press conference.

It was organized the way you might expect: an explanation of the issue at hand paired with stories from the people who the nonprofit serves — people who also happen to work at the center.

But the topic, even considering the Independence Center's propensity for picking fights on issues like bus service or legislative cutbacks, was politically explosive. Yeager wanted to discuss Speaker of the House Paul Ryan's plan, fully backed by President Donald Trump, to repeal Obamacare and put a new health care plan in its place, which would have included severe cuts to Medicaid funding. Yeager's expectation should the bill pass? Set dollar amounts allocated annually to people with disabilities that wouldn't even cover a couple months' worth of bills for most of her clients. The elimination of programs that help people live active lives. Clients forced to live in nursing homes rather than their own homes.

Speaking to this reporter later in the day, Yeager looked troubled.

"We're already having trouble meeting the needs," she said.

Over the subsequent couple days, of course, the already-tense discussions on health care in the Capitol would further break down. A planned Thursday vote would be tabled. Trump would make his ultimatum: Vote for the damn thing Friday or forget about reforming health care. A panicked Ryan would make a run to Trump's office when it became obvious that, despite the president's threat, the plan just wasn't going to fly. By Friday afternoon, Trumpcare was officially dead and Yeager, reached over the phone was jubilant.

"I think we've dodged a bullet," she said. "There's a sense of relief."

"But," she added, "I don't know if we can count on it."

And therein lies the difficulty with what should have been the ultimate victory for Obamacare proponents like Yeager. Trump has said he's dropping the health system overhaul. But Trump has been known to change his mind. In fact, shortly after the failure of Ryan's plan, Trump was already saying he'd revisit the issue when Obamacare "explodes."

And recall, what went down in flames on March 24 was an effort to repeal and replace Obamacare. The failure of that effort, Yeager notes, doesn't preclude smaller changes, like a slow chipping away at the entitlement with nothing to take its place.

Yeager says she'd like to think that Congress will try to fix Obamacare's access and affordability problems — or that the federal government might instead decide to adopt a single-payer system. But she thinks it's far more likely that Republicans will look for alternative ways to kill portions of Obamacare, such as defunding it in the federal budget.

"Now we know how close we came to losing [Obamacare]," she says, "and it could happen again."

The Independence Center's goal is hinted at in its name: helping people with disabilities live on their own. And while the Center provides many programs to help with that goal, Medicaid pays for most of them. Instead of languishing in nursing homes, people with disabilities are covered under Medicaid for a variety of services and products — specialized wheelchairs and adaptive equipment, training in how to use a bus or dress themselves, home health care aides. Yeager says she knows that a lot of people don't care about those quality of life issues. "I think that in our society today there's this attitude of 'it's not my problem,'" she said.

But she countered with two observations. First, she said, it's actually a lot more expensive to stuff someone in a home for the rest of their lives, costing the government some $6,900 per month. Second, anyone can become disabled — as many of her clients can tell you. You just have a stroke. Or you get hit by a car.

"Then you see how much on the edge we all live," she said. "Then it becomes your problem."

For people with disabilities, the threat of cutbacks can be terrifying.

click to enlarge Charlene Youngblood relearned simple tasks. - J. ADRIAN STANLEY
  • J. Adrian Stanley
  • Charlene Youngblood relearned simple tasks.

Take Charlene Youngblood, 65, one of the workers that the Independence Center trotted out for its press day. About seven years ago, Youngblood, who was a preschool teacher for 30 years, suddenly stopped being able to use her legs. Doctors couldn't figure out what was wrong and sent her to live in a nursing home. She was getting better and planning to move back into the house she rented with her husband when tragedy struck. Her husband died suddenly of carbon monoxide poisoning. Youngblood has four grown children, but none had the means to take on her care. In the course of a year she had lost her career, her home, her mobility and her husband. She was stuck.

"Living in a nursing home isn't a life," she says. "It's like going through the motions of existing."

It was a program offered through the Center and funded by Medicaid that got her out of the nursing home. Medicaid paid for her wheelchair and the program taught her how to live with it — how to get housing, ride a bus, get groceries. Now, with a bit of help from a home health aide, she's not only living independently but also working for the Center helping people through the same program that helped her.

click to enlarge Marsha Unruh cares for her disabled brother. - J. ADRIAN STANLEY
  • J. Adrian Stanley
  • Marsha Unruh cares for her disabled brother.

Another Center employee, Marsha Unruh, says Medicaid programs allowed her to care for her adult brother when her parents couldn't do it anymore. Marty Unruh, 55, has an intellectual disability and a host of physical problems, including seizures. He can't be left alone, both due to the health problems and his unwittingly dangerous behaviors — microwaving his breakfast until it catches on fire, eating whole containers of mayonnaise, or running outside during the night.

Despite all this, Marsha says Marty is fun to live with. "He's very welcoming and you can't help but smile when you see him," she says.

Marsha, who has a ready smile and keeps a box of toys in her office, says she loves her brother and could never put him in a home.

But without Medicaid paying for all the services he needs, she doesn't know what she'd do. Nothing else, she says, could fill in where it left off.

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