Kansas Health Institute | Information For Policy Makers. Health for Kansans.

TOPEKA — When legislators ask how many people with developmental disabilities are on the state’s waiting list for home and community based services they get two answers.

The Kansas Department of Social and Rehabilitation Services says the number is now close to 2,200.

Interhab, an association representing 41 community based programs that provide services to the developmentally disabled, says it’s more like 4,200.

Neither disputes the other’s numbers.

Interhab’s number includes adults and children whose needs may not be immediate; for example, a special education student whose parents let the state know their son or daughter will need services in two or three years.

SRS’ number includes only those whose dates for needing a service have passed.

“If someone had requested a service for, say, Nov. 1, they would be counted because Nov. 1 has passed,” said Ray Dalton deputy director for health care policy at SRS. “But if they’d asked for a service starting on Feb. 1, they wouldn’t be counted until after Feb. 1.”

SRS’ number, Dalton said, is meant to give legislators an accurate snapshot on what it would take to adequately fund the waiting list.

“The assumption is that we wouldn’t be asking for more money than we would be in a position to spend at that point in time,” he said.

Interhab’s number includes everybody on the waiting list regardless when they’ve said they’ll need the services.

“Legislators need to have the full picture,” Interhab spokesman Matt Fletcher said. “It doesn’t do a lot of good to fund the immediate need if you know you’re going to have a waiting list the next year. They need to understand the full scope of the problem.”

Both sets of numbers also include people considered “underserved,” those receiving one or more services but who need more.

In recent years, the waiting list has increased by about 300 to 400 persons annually.

Rep. Bob Bethell, R-Alden, said most legislators are aware of the differences in the counts.

“I probably tend to put more credence in the Interhab number because as legislators we all know none of this is going to happen overnight,” said Bethell, chairman of the House Aging and Long Term Care Committee. “It’s going to have to spread out over a period of four or five years.

“But I don’t fault SRS for its number,” he said. “It’s a snapshot. People know that.”

In 2008, Bethell helped craft a bill designed, in part, to eliminate the waiting lists for the developmentally disabled and to increase the capacity of the community programs. The bill called for spending $100 million over four years.

It passed but was not funded.

Now, Dalton said, the only people moving off the waiting list are those in crisis situations.

“It can be any number of things,” Dalton said, “but, usually, it’s a change in support structure such as a parent dying or their health declining to a point that prevents them from caring for their son or daughter, creating a situation where it’s likely the individual could end up in an institution or in adult protective services.”

Dalton said the person on the waiting list the longest has been waiting since June 2005.

”Basically, if you’re not in crisis, you stay on the list because we don’t have the money to move you off,” he said.

Connie Zienkewicz runs Families Together Inc., a federally funded program that helps families provide and obtain services for their children with developmental, physical, and learning disabilities.

Her 24-year-old daughter, Julie, has multiple disabilities. She receives day services but is on the waiting list for residential services.

“As a parent, I prefer that legislators go with the Interhab number,” Zienkewicz said. “I want the whole system to be fixed, I want there to be a longer-term dimension to this for our daughter and for others in her situation. I’d like to see us not just do the minimum.”