Advocates for the developmentally disabled are threatening to sue the state because of its plan to move 15 Parsons State Hospital residents into community programs.

“What they’re doing violates the law, in our opinion,” said Tom Laing, executive director of Interhab, an association representing the state’s 28 community programs for the developmentally disabled.

Here’s why: To pay for the moves, the Department of Social and Rehabilitation Services wants to take money from a fund set up to help community programs reduce their waiting lists, including Lawrence’s Cottonwood Inc.

Until now, money to support the residents has come from the state-hospital budgets.

SRS officials defend their plan, saying it’ll pinch $1.5 million from a desperately lean budget.

But Laing and others argue the arrangement shortchanges the 450 developmentally disabled Kansans, most of them recent graduates of high school special education programs, now on community program waiting lists.

Laura Howard, assistant secretary in charge of health-care policy at SRS, said moving 15 residents out of Parsons State Hospital will likely add about 40 people to the community programs’ waiting lists.

Agonizing suspense

Three years ago, Pam Sharp’s son, Glen III, was on Cottonwood’s waiting list.

“He had turned 21, so he couldn’t go back to special education; he was too old,” said Sharp, who lives in Baldwin with her son and husband, Glen II. “The plan all along had been for him to transition into Cottonwood, but then we were told he might have to wait two or three years because the money wasn’t there.

“That was the most anxiety-ridden part of our lives because what does that mean? He has to have somebody with him 24 hours a day. Does that mean I have to quit my job?

“You can’t plan ahead on anything,” Sharp said, “because you don’t know anything. It was incredibly frustrating.”

The Sharps were lucky. Glen Sharp III didn’t have to wait for an opening at Cottonwood.

Still, making families wait for services is hard on families, said Pam Sharp.

“I don’t think the public realizes what parents go through, wondering if the services are going to be there,” she said. “And every year, it seems like there’s a group of parents that goes through this because every year it’s the same story  nobody knows if the money is going to be there.”

Fragile promise broken

Advocates says the SRS plan breaks a fragile promise made to hundreds of developmentally disabled Kansans and their families during the 1997-98 closure of Winfield State Hospital, when SRS repeatedly assured worried family members that state money for services would always follow residents moving from state hospitals to community programs.

And, in fact, state-hospital money has followed residents into community programs since the closing of Norton State Hospital in 1988.

“What SRS wants to do is not what they said they’d do,” said Barbara Bishop, executive director at ARC of Douglas County, a program that advocates for the developmentally disabled.

“The understanding has always been that as people in the state hospitals move to community programs, the money would follow in ways that would not take money away from those already in the community programs or who were close to entering,” she said.

Temporary fix

At SRS, Howard said the funding shift is meant to be temporary, lasting only two or three years, or until the budget picture improves.

“We don’t want this to be a long-term change in state policy,” she said.

Also, Howard said, the 15 slots in community programs are likely to cost less than $1.5 million.

“That’s a worst-case scenario,” she said. “It probably won’t be that much.”

Howard said she doubts the change in funding will be as disruptive as advocates fear, noting that community programs aren’t expected to spend all their waiting-list money this fiscal year, which ends June 30.

But Laing of Interhab disagreed.

“SRS’ projections show us being underspent by about $750,000,” he said. “Our projections have us overspent by $500,000. The truth is neither one of us really knows. It’s a crapshoot.”

Lawrence considered

At Cottonwood, executive director Sharon Spratt said families of two of the Parsons State Hospital residents considered, but ultimately decided against, moves to Lawrence.

“It looks like one of them will be going to Community Living Opportunities in Johnson County,” she said. “The other one has been in an institutional setting all her life, and the family had concerns about her making the transition to the community.”

Though SRS has made closing the cottage a priority, it’s not forcing families to move residents. Only those willing to move will be moved.

Spratt said making community programs pay for the residents moves will hinder Cottonwood’s efforts to keep pace with the needs of area families.

“It just means community programs’ piece of the pie will be $1.5 million smaller; there’ll be less money per person,” she said.

Today, seven Douglas County families are waiting on openings in services offered through or by Cottonwood.

Weighing in

So far, few legislators have weighed in on the SRS plan for Parsons State Hospital.

“It’s just one of the things on the list of what’s going to happen if we don’t do something to raise revenues,” said Rep. Gerald Henry, D-Cummings. He’s executive director of Achievement Services, the community program in Atchison.

“There’s going to be knock-down-drag-out over whether we raise those revenues  and this’ll be one the issues that gets talked about  but we’re not there yet,” he said. “We’re all just waiting.”