Slashed funding, tighter restrictions could hurt hundreds of thousands WA residents on Medicaid

Every parent’s goal for their children is to teach them life skills that help them launch into adulthood — but that gets complicated when a child has a disability.

Many of those families rely on Medicaid, a federal program, for support. Now, one Bellevue family is worried about what the Trump administration’s recent safety net cutbacks could mean for their son.

The Medicaid waiver program provides support for nearly every aspect of Nate Nemhauser’s life — whether he’s getting ready for school, taking part in enrichment activities, or getting ready for his work shift at Pagliacci Pizza.

Nate is 21 years old. He has autism and an intellectual disability. Communication and concentration are difficult for him.

His job coach, Megan Cymanski, joins him at work to help him clock in and stay on task: folding pizza boxes and stocking the drink cooler.

Nate started work in November. His mother, Rachel Nemhauser, says he started with just one two-hour shift a week. Then, it became two shifts. Now it’s up to three.

“He has this rich, busy life,” Nemhauser said. “And these Medicaid waivers are there to help make it happen, make it a reality.”

Many people associate Medicaid with health care for low-income families. But it’s more than that.

In the early 1990s, the federal government gave states flexibility to use Medicaid funds for non-medical services. The goal was to allow recipients who are elderly or who have disabilities to stay home and within their communities, instead of relying on institutional care. Currently Washington has several Home and Community Based Services Medicaid Waivers.

Nemhauser applied for a waiver when Nate was a toddler. She remembers struggling to provide care. His needs were intensive, and required specialized services like speech and behavior therapies.

“I was starting to wonder, 'Do I have to find him another place to live? I don’t know if I can care for him,'" Nemhauser recalled. "And that’s a really low place to be."

After a nine-year wait, Nate was granted a waiver at age 12. He receives about $6,000 a year in aggregate funds.

Nemhauser says that money is spent on programs to help with Nate’s daily needs. He requires one-on-one support from specialized providers who are experienced in working with people with autism and other disabilities. He needs similar support to participate in recreational activities. The family gets to decide how to allocate those funds.

“If he's spending more time getting employment support, he doesn’t need as much recreational activities,” Nemhauser said. “But there’s never enough.”

According to the Washington State Health Care Authority, nearly 2 million Washington residents are enrolled in Medicaid. The agency is still assessing the impacts of the recently approved federal budget, but it’s projecting up to 320,000 enrollees could lose coverage. The health policy research group KFF estimates Washington stands to lose $36 billion dollars in Medicaid funding.

Supporters of the cuts argue current Medicaid spending is unsustainable, and that the system’s eligibility requirements have been lax, leading to fraud and abuse.

Nemhauser disagrees with that belief.

“I am not seeing the system being misused," she said. "I’m seeing people desperate for help and accessing these as lifesaving measures.”

Right now, Nate is at a crossroads, Nemhauser said. He has one year of school left, and they’re trying to map out how he’ll find social opportunities and other ways to fill his time outside of work.

But it’s hard to make plans, she says, when it’s not clear yet what steps the state will take — and whether it will allow Nate enough support to live the life he wants.

“He wants a job, and a house, and a girlfriend, and a cat," she said. "He’s not asking for a lot."

Back at Pagliacci Pizza, Nate has just clocked out of his work shift. He’s about to enjoy one of the perks of the job: a slice of cheese pizza and a Coke.

The hope is that, one day, Nate will no longer need a job coach at work, as he presses on toward his goal of independence.