LAKSHMI SINGH, HOST:
Nick Fugate has an intellectual disability. A few decades ago, he might've been institutionalized. But now in many states Medicaid is supposed to help people like Fugate live on their own. In Kansas, where Fugate lives, there's a long wait list for Medicaid services. From KCUR in Kansas City, Alex Smith reports.
ALEX SMITH, BYLINE: At his apartment in suburban Kansas City, 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 FUGATE: I mean, there was nothing easy. I mean, I constantly had to, like, scrape - just scrape the dishes off, you know, to get it clean.
SMITH: The long days, the hot kitchen, his fingers pruning in the water, it could get tedious. But Nick says he didn't mind.
N FUGATE: You know, just as long as I got the job done, it was fine.
SMITH: It wasn't glamorous, but Nick's father Ron Fugate says the dishwashing job was the key to the self-reliance he always wanted for his son.
RON FUGATE: Having a job, being independent, participating in the community, paying taxes, being a good citizen, I think that's the dream parents have for their children in general.
SMITH: All of that changed last year when Nick lost his job and did something he'd never done before. He enrolled in Medicaid. It's the government health insurance for Kansans who are low income or have disabilities. It landed him on a waiting list. And while he's waiting, he's paying out-of-pocket for job coaching, transportation and help buying groceries. At a thousand dollars a month, it's quickly burning through his life savings.
This year, lots of Kansans like the Fugates have been speaking out at forums like this one in Kansas City.
UNIDENTIFIED PERSON: I have had a client that has had six care coordinators, and three of them she never even met.
UNIDENTIFIED MAN: Thank you very much. I'm hearing a pattern on some of these responses.
SMITH: The state's been gathering feedback because it needs the federal government's permission to continue running KanCare, what the state calls Medicaid. In 2013, Republican Governor Sam Brownback put Medicaid under the management of three private companies. He promised this would improve services, cut waste and save enough money to end the waitlist for the kind of services Nick Fugate needs.
But the list Fugate is on hasn't gone away. It's actually grown by a few hundred to about 3,500. Brandt Haehn is the state's commissioner for Home and Community Based Services.
BRANDT HAEHN: I think everybody in the system is doing the best job that they can do in order to provide the people services.
SMITH: Haehn says an end to the waiting list is in sight. In August, the state announced it had eliminated another waiting list, the one for physical disability services. But Haehn acknowledges that developmental disability cases are more expensive and complicated, and it will take more time to find the estimated $1.5 billion the state will need to eliminate the waitlist through 2025.
HAEHN: Nothing would make me happier than to be able to come in here and write a check and get all these people services. But that's just not reality, so I have to deal within what reality is and try to use the money that I have to effect positive change in the most amount of people.
SMITH: But the state's ability to act may be limited. Along with KanCare, the governor introduced huge tax cuts which were supposed to boost the economy but instead have blown a huge hole in the state's budget, leaving little money to apply to something like the Medicaid waiting list. Ron Fugate and other advocates meanwhile are desperately looking for solutions.
R FUGATE: We're not treading water. We're drowning. And it's not getting any better. We've got to start taking some serious action on this and get it addressed.
SMITH: He and Nick's mom are in their 70s, and they say they're now watching their carefully laid plans for their son's future slip away.
R FUGATE: After 22 years, it looked like he was going to be able to complete a career, and it didn't happen that way. You know, we're in the waning seasons of our life, and we did not anticipate this kind of a challenge at this point.
SMITH: Kansas submits its application to the feds to re-up KanCare this month. For NPR News, I'm Alex Smith in Kansas City.
NPR transcripts are created on a rush deadline by an NPR contractor. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.