For those needing developmental support, years on a waiting list often lie ahead

06/17/2014 4:38 PM

06/17/2014 4:39 PM

For 30 of her 48 years, Suzy Graves of Overland Park has been sorting things in a work program with Johnson County Developmental Supports. Sometimes it’s herbs going into little bags with stickers, sometimes it’s the components of medical testing kits.

She likes it fine, she says, because “you get back in the swing of things, get back in normal life.” And of course, there’s the paycheck.

Graves has been at JCDS almost from the minute she graduated from high school. Back then, it was possible for people with developmental disabilities like cerebral palsy and autism to go straight from school into a job doing the kind of work Graves does.

But that was then. Now, someone in Graves’ position will be waiting. And waiting. Seven years is the most often quoted time.

That’s what one family with a 21-year-old son who has autism was told when they tried to sign him up for support services.

“He’s a young man and needs to be in a program. They’re telling us it’s okay for him to sit on the couch,” said the mother, who didn’t want the Olathe family named for fear of retaliation.

She said she fears her son will regress without something to do during the day.

“He really needs to be on focus and on task,” she said. She had to quit work to stay home with him. “I try to organize his day, but there’s only so much I can do,” she said, adding the family can’t afford the $60 per day it would take to pay for such a program on their own.

Johnson County Developmental Supports is a county agency not often in the news, but families with mentally challenged loved ones know it well. It is the agency that lines them up with a wide variety of support services like employment, caregivers and even art workshops and kit assembly like that offered at its Lenexa building. And it is their point of entry into the deeply intertwined network of bureaucracy that delivers money from the federal and state governments into services at the county level.

Services for the developmentally disabled have been much on the minds of policy makers the past couple of years as states grapple with how to help people who may need long-term care in many aspects of daily living. A developmental disability is defined as a lifelong disability that starts in childhood and affects thought processes.

Kansas ranked 37th of the 50 states for disability services, according to a 2013 survey by United Cerebral Palsy. The survey ranks states not on funding but on such things as inclusion in competitive employment, waiting time and numbers being served. Kansas has such a long waiting list that it would have to increase its program by 34 percent to meet the need, the survey said.

However that is not as bad as Texas, which was ranked 50th and would have to grow three times as big to meet its need. The Olathe family, which moved from Texas, said they were given a 17-year wait estimate there.

There were 3,141 people on the waiting list and about 8,700 already being served in Kansas as of May 15, said Angela de Rocha, spokesperson for the Kansas Department of Aging and Disability Services. Included in that is 1,740 on a controversial “underserved list” of people who have some services but are awaiting others.

Last year there were protests from advocates for the developmentally disabled who did not think the state’s new KanCare program, with its reliance on private managed care providers, would be an effective way to deal with their issues. The system is vastly underfunded, they say.

Caught up in all of this is Johnson County. Although it is the state that has control over the size of the waiting list, the county — as administrator of the services — is the face of the program for most people.

More than 500 people a day get some kind of services from JCDS. At its Mark D. Elmore Center at 105th Street and Lackman Road, a little more than 200 do on-site work, assembling kits full or part-time for businesses that contract with the county. The facility also offers a retirement center and an emerging artists program.

In addition, the agency has placed some 44 clients with partnering businesses that pay them from $7.25 to 47.71 per hour. And 123 clients get residential services — apartments or group homes — at 55 locations. The county also refers clients to private providers of adult day services.

All this is done on a budget of about $20 million, with $9.6 million coming from the county, $9.1 million from state and federal dollars and $1.8 million from fees and other resources, like the non-profit Friends of JCDS.

Clients must qualify for Medicaid to get services, with a waiver allowing them to get community-based care rather than being consigned to a large state institution.

But the state funding has been so short that many are not getting the services they qualify for and must join a waiting list, say county officials and advocates of the disabled. According to the county’s 2013 annual report, there were 538 Johnson Countians on the list who are eligible but receive no services. Some 438 are on the “underserved” list, meaning they get some services but not all they have requested.

“The goal is to try to help people be as independent as possible,” said Chad Von Ahnen, director of the county developmental supports agency.

In the main rooms at JCDS, about 200 people assemble kits or do labeling, sorting and collating for notebooks from 8:30 a.m. to 3 or 4 p.m.

Some, like Mary Susan Fisher of Olathe, had other jobs before. Fisher said she prefers the county program because her fast food employers kept cutting her hours. She likes the county for its 40-hour weeks, she said.

The county faces some of its own issues as well. Some private caregivers also are looking for more support from the county. Susan Jarsulic of Dreams Work Inc., an adult day service provider with 12 clients, would like to see Johnson County give direct funding to private providers, as other counties do. The state has not increased its support to private providers in fast enough to meet rising costs, and she said the county could help make up that gap.

She and a few other care providers buttonholed county officials at a recent budget forum on that issue, saying the state has not kept up with their funding needs. So far, that idea has not caught on with the county commission, however.

Then there is the demographic shift brought about by aging Baby Boomers.

County Commissioner Michael Ashcraft has often campaigned from the dais to make developmental supports a higher priority in county spending as parents of disabled adults get older, he said.

“At some point, who’s going to take care of Johnny or Susie?” he said.

“If we do not have a meaningful established way of helping we will have a social, if not humanitarian, catastrophe,” Ashcraft said.

Ashcraft said he doesn’t have a solution, but the county should look into every way possible to educate and encourage employers to hire the disabled. Tax incentives to employers is one possibility, he said.

Meanwhile, the long wait time has some concerned enough that they are signing up early.

Chris Reeves of Overland Park, has already put his son, Augustus, on the list. Augustus, 15, is autistic and bipolar with self-harming issues, Reeves said.

Reeves worries about what will happen to Augustus after he graduates from the Lakemary Center in Paola. The cost of the type of residential care he needs would be prohibitive, he said.

The Reeves put Augustus on the waiting list almost two years ago. “We went through the hoops early with hopes that by the time he turns 21 there’s the potential he’ll get it,” he said.

The Olathe mother is also frustrated. “I don’t know that I have someone I blame, except the services are not available and the care is not there,” she said.

And meanwhile, her son needs structure. “He’s bored out of his mind, and why wouldn’t he be?” she said. “Who wants to never do anything in life?”

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