For 22 years, Nick Fugate washed dishes at a local hotel near his home in Olathe, Kan.
鈥淭here was nothing easy,鈥 said the 42-year-old man who has an intellectual disability, chuckling. 鈥淚 just constantly had to scrape the dishes off to get them clean.鈥
The work did sometimes get tedious, he said, but he didn鈥檛 really mind. 鈥淛ust as long as I got the job done, it was fine,鈥 he said.
Nick鈥檚 father, Ron Fugate, said the job was the key to the self-reliance he鈥檚 wanted for his son ever since Nick was born with an intellectual disability 42 years ago.
鈥淔rom our perspective,鈥 Ron said, 鈥渉aving a job, being independent, participating in the community, paying taxes, being a good citizen 鈥 that鈥檚 a dream parents have for their children in general.鈥
But things got tough last year when Nick lost his job and his health insurance. For the first time, he enrolled in Medicaid. He got his basic medical care covered right away, but in Kansas, there鈥檚 now a long waitlist 鈥 a seven-year wait 鈥 for people with intellectual disabilities to get the services they need. Decades ago, Fugate might have been institutionalized, but Medicaid now provides services to help people remain independent 鈥 including job coaching, help buying groceries, food preparation and transportation. These are the services Nick is eligible for but must wait to receive through Medicaid.
In the months since losing his employment, Nick has had to pay around $1,000 a month out of pocket for help buying groceries, career coaching and transportation. Those expenses are quickly burning through his life savings.
This year, families like the Fugates have been speaking out about that long waitlist and about other Medicaid problems at public forums like one held at the Jack Reardon Convention Center in Kansas City, Kan., in May.
In a basement meeting room, hundreds of people with disabilities, their families and caseworkers railed against KanCare 鈥 the state Medicaid program. Some heckled the moderator. The state has been gathering feedback because it needs the federal government鈥檚 permission to continue running KanCare.
In 2013, Republican Gov. Sam Brownback put KanCare under the management of three private companies that promised to improve services, cut waste and save enough money to end the long waits for the kind of services Nick needs.
Two and a half years later, many families say they鈥檝e seen few signs of improvement, especially in terms of shortening the waitlist. In fact, it鈥檚 actually grown by a few hundred names to about 3,500. And, except in emergency situations, the wait to get treatment averages seven years.
But an end is in view, insisted聽, commissioner for Home and Community Based Services, part of the agency that oversees KanCare.
鈥淚 think everybody in the system is doing the best job they can do to provide the people services,鈥 Haehn said.
In August, the department announced it had eliminated a different waiting list 鈥 the one for getting physical disability services. That claim has been by advocates, who say many people were dropped from the list without notice.
But state officials say the progress that鈥檚 been made in speeding up the start of services for KanCare applicants who have physical disabilities demonstrates that the agency can get results.
Haehn did acknowledge that cases like Nick Fugate鈥檚, of developmental disability, are more expensive and complicated than physical disability cases. It will take time, he said, to come up with $1.5 billion 鈥 the state鈥檚 share of a $2.6 billion program 鈥 that鈥檚 needed to make sure that, at least through 2025, everyone qualified for these important services can get them without having to wait.
鈥淣othing would make me happier than to write a check and give all these people services, but that鈥檚 just not reality,鈥 Haehn said. 鈥淪o I have to deal with what reality is and try to use the money that I have to effect positive change in the most people.鈥
But Ron Fugate said KanCare had its chance. 鈥淲e鈥檙e not treading water, we鈥檙e drowning,鈥 he said. Families like his are quickly losing lifelong savings, he said, and their life situations are getting worse while they wait for the state to provide services.
鈥淚t鈥檚 not getting any better,鈥 he said. 鈥淲e鈥檝e got to start taking some serious action on this and get it addressed. We鈥檝e kicked the can down the road too long.鈥
The U.S. Department of Justice is investigating the waiting lists, although it declined to comment for this story.
The ability of the state of Kansas to act may be limited. Gov. Brownback鈥檚 tax cuts, which he initiated to boost the economy, have instead blown a hole in the state鈥檚 budget, leaving little money to apply to something like reducing the length of the KanCare waitlist.
Meanwhile, Ron Fugate and other advocates have been studying the ways Missouri recently eliminated its waiting list for similar services, in hopes of persuading Kansas legislators to adopt the same strategy.
Ron and his wife are both in their 70s and say they鈥檙e now watching their carefully laid plans for their son鈥檚 future slip away.
鈥淎fter 22 years, it looked like he was going to be able to complete a career,鈥 Ron said, 鈥渁nd it didn鈥檛 happen that way. All of this comes at a time in our lives where we鈥檙e in the waning seasons. We did not anticipate this kind of a challenge at this point.鈥
Kansas submits its application the federal government to reauthorize KanCare this month.
This story is part of a partnership that includes , and Kaiser Health News.