Health

Ashley Dozier can’t speak or move, but she keeps up with what’s going on in the world.

Dozier studied communications in college and once had aspirations to be a doctor. Now, she spends most of the day watching various political shows on television, and listening to radio news. She is informed.

So when her husband, John Peck, turns to her and presents two note cards – one with a ‘yes,’ on it and one with a ‘no’, and asks, “Are you stressed about the Obamacare repeal?” Dozier’s eyes look to ‘yes.’

36-year-old Dozier has ALS, which is also known as Lou Gehrig’s Disease. ALS is a neurodegenerative disease that slowly stops motor neurons from working, and for Dozier, the condition has progressed quickly. Her entire body is paralyzed, except her eyes and partially her mouth. She needs care 24 hours a day to do things she can’t do for herself, like suction the saliva out of her throat.

“As you can see, she requires constant care,” Peck said. “She has drainage and she can’t bring it back up. So if you sleep, it has to be a cat nap.”

And this constant care, provided in Dozier’s Louisville home by professional nurses, Peck and Dozier’s mother, is made possible by Medicaid. Without it, Dozier would likely live in a nursing home or the family would drain their savings.

Caps To Medicaid Care

In Kentucky, there are more than 20 programs like Dozier’s that provide in-home care to people with physical, developmental and intellectual disabilities. Dozier’s program is specifically for people on ventilators, and there are only 40 people in Kentucky enrolled.

But other programs are more popular: Two that specifically serve people with developmental and intellectual disabilities help pay for care for 15,000 people combined, and have 10,000 people on waiting lists.

These programs weren’t created by the Affordable Care Act. Nevertheless, if the Senate’s latest repeal bill passes, it’ll bring with it steep cuts to these Medicaid programs, and unwelcome changes for Dozier and her family.

“It caps the program on a per beneficiary basis, making cuts in the program that grow larger over time,” said Judy Solomon, vice president for health policy at the Center on Budget and Policy Priorities. “This has nothing to do with the Affordable Care Act.”

Right now, the federal government pays for 70 percent of Dozier’s care, while the state pays the remaining 30 percent. Included in all this are Dozier’s hospital visits, her ventilator and the 16-hours of nursing care she can get a day. It’s expensive.

Under the Graham-Cassidy Senate bill, that would drastically change. Instead, the federal government would give Kentucky a set amount of money per year for Dozier’s care.

Jeff Myers is the CEO of Medicaid Health Plans of America, a trade group representing Medicaid insurers.

“Yes, unfortunately [Dozier’s] care and that of others who rely on [Medicaid] might eventually be affected,” Myers said. “Not only would the proposal give states permission to reduce benefits and coverage to underserved Americans, it also would create financial pressure for states to do so.”

A spokesman for the Kentucky Cabinet for Health and Human Services said it would be inappropriate for him to comment on hypothetical situations. But Dustin Pugel with the Kentucky Center for Economic Policy said he doesn’t think Kentucky would pitch in more money to cover the possible shortfall.

“People with disabilities who are the most expensive patients, they’re going to be the ones with the target on them,” Pugel said. “In the end there will be no sacred cow, they’re going to have to find ways to cut services or the number of people covered.”

‘We’re not trying to mooch off the government’

Placing caps on Medicaid funding could upend Ashley Dozier’s life, but there’s another way the Graham-Cassidy bill could affect her care: Her husband John Peck gets his health insurance on Healthcare.gov and receives financial help to pay for it. Under the proposed legislation, that’s in flux, too.

“I need to stay healthy so I can take care of her and I just can’t go out and get a good job with good health insurance,” Peck said.

It’s still unknown whether Graham-Cassidy will pass. But as Congressional Republicans continue their fight to reform the country’s health care system, the future of Dozier’s care is also unknown. Talking about it makes Dozier turn her mouth into an exaggerated frown.

“It’s irritating for me, and Ashley,” Peck said. “We’re not trying to mooch off the government. We’re just in a bad spot, and we need a little help. And this isn’t helping, trying to repeal Obamacare.”

Dozier can live decades longer with her ventilator, and when Peck asks her if she’s still happy on it, her eyes point to the ‘yes’ index card.

Lisa Gillespie is WFPL's Health and Innovation Reporter.