At his apartment in Olathe, Kansas, 42-year-old Nick Fugate catches up on washing dishes and remembers the 22 years he spent doing it at a local hotel, trying to stay on top of a never-ending-stream of plates, glasses and silverware.
Nick recalls minor annoyances like the long days, the hot kitchen and his fingers pruning in the water. It could be tedious, but he says he didn’t really mind.
“Just as long as I got the job done, it was fine,” Nick says.
The job wasn’t glamorous, but Nick’s father Ron Fugate says it was the key to the self-reliance he wanted for his son ever since Nick was born with an intellectual disability.
“From our perspective, having a job, being independent, participating in the community, paying taxes, being a good citizen – that’s a dream parents have for their children in general,” Ron says.
But all of that changed last year when Nick lost his job and did something he’d never done before: He enrolled in Medicaid.
That landed him in a state of limbo, along with thousands of other Kansans.
Savings up in smoke
Not far from Nick’s home, 30-year-old David Lee Hunter and a handful of men at Lake Mary Center in Olathe take apart computers and other electronics for recycling.
Hunter thinks of each piece that passes across his workbench as a unique puzzle.
“I like to improvise, and I like to ask my coworkers for assistance,” Hunter says.
Elsewhere in the building, other individuals with disabilities shred medical documents or get job coaching. Lake Mary also offers services like transportation or help buying groceries.
A few decades ago, many of Lake Mary’s clients might have received Medicaid care as residents of an institution. But in the early 1980s, states began shifting their strategies to allow people with intellectual and developmental disabilities to live at home.
Advocates say this was not only much cheaper – about a third of the cost of institutional care – but it provided a vast improvement in the clients’ quality of life.
In many states, however, the first step toward getting these services is signing on to a long waiting list.
That’s what happened when Nick applied for Medicaid. In the months since, he’s had to pay around $1,000 a month out of pocket for Lake Mary’s services.
It’s quickly burning through his life savings.
This years, families like the Fugates and many others in similar situations have been speaking out about the waiting list and other Medicaid problems at public forums like one held in Kansas City, Kansas, in May.
In a basement meeting room of the Jack Reardon Convention Center, hundreds of people with disabilities, their families and caseworkers railed against KanCare. Some even heckled the moderator.
The state has been gathering feedback because it needs federal government permission to continue running KanCare, Kansas’ privatized Medicaid system.
In 2013 Republican Gov. Sam Brownback put Medicaid under the management of three private companies, promising it would improve services, cut waste and save enough money to end the lists for the kind of services Nick Fugate needs.
Conservatives loved the plan, but developmental disability families were less happy. They didn’t trust the companies to provide the complicated help their loved ones needed. They managed to get the federal government to delay the switchover, but in February 2014 the feds gave their approval and the KanCare experiment began.
Two-and-a-half years in, many families say they’ve seen few signs of improvement, particularly in the waiting list.
Not only is there still a waiting list, it’s grown by a few hundred to about 3,500 people.
Except in emergency situations, the average wait is seven years.
An end to the list remains in view, insists Brandt Haehn, commissioner for Home and Community Based Services, part of the agency that oversees KanCare, the Department of Aging and Disability Services.
“I think everybody in the system is doing the best job they can do to provide the people services,” Haehn says.
In August, the department announced it had eliminated a different waiting list – the one for physical disability services.
Although that claim has been challenged by advocates, state officials say it shows KanCare can get results.
Haehn, however, acknowledges that developmental disability cases are more expensive and complicated, and it will take time to come up with the state’s share of the total cost of $2.6 billion – about $1.5 billion – needed to eliminate the waiting list through 2025.
“Nothing would make me happier than to write a check and give all these people services, but that’s just not reality,” Haehn says. “So I have to deal with what reality is and try to use the money that I have to effect positive change in the most amount of people.”
Ron Fugate says KanCare had its chance.
“We’re not treading water; we’re drowning,” Fugate says. “And it’s not getting any better. We’ve got to start taking some serious action on this and get it addressed. We’ve kicked the can down the road too long.”
The Department of Justice is investigating the waiting lists, although it declined to comment for this story.
The state’s ability to act may be limited. Brownback’s tax cuts, which were supposed to boost the economy, have blown a huge hole in the state’s budget, leaving little money to apply to something like a Medicaid waiting list.
Meanwhile, Nick Fugate is still waiting.
His parents Ron and Julie are in their 70s, and they say they’re now watching their carefully laid plans for their son’s future slip away.
“After 22 years, it looked like he was going to be able to complete a career, and it didn’t happen that way. And so all of this comes at a time in our lives where we’re in the waning seasons of our life, and we did not anticipate this kind of a challenge at this point.”
Alex Smith is a reporter for KCUR, a partner in the Heartland Health Monitor team. You can reach him on Twitter @AlexSmithKCUR