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Developmental disabilities advocates support using savings to reduce waiting lists

  • Eagle Topeka bureau
  • Published Monday, May 6, 2013, at 11:39 a.m.
  • Updated Wednesday, Oct. 9, 2013, at 2:53 p.m.

— Advocates for Kansans who have developmental disabilities applauded Gov. Sam Brownback’s proposal to channel part of the savings from Medicaid reform toward providing services for people who have been on waiting lists.

Brownback recently proposed spending $18.5 million of roughly $60 million in unexpected savings to reduce waiting lists for Medicaid home- and community-based services.

“We think this is a great move on the part of the governor,” said Tim Wood, who manages the End the Wait Campaign for the Kansas Developmental Disabilities Policy Group.

Wood said Brownback’s initial budget proposal essentially held funding for the developmental disability waiver flat. He acknowledged that hundreds of people would remain on waiting lists even with the new money, but he said the financial boost is still positive news.

“This is progress,” he said. “We would love to say we could end this tomorrow.”

Wood said his organization is asking lawmakers, who return to Topeka for a legislative wrap-up session this week, to create a long-term, comprehensive plan to eliminate the roughly 5,000 people from the waiting lists.

Wood said it costs about $21,000 a year to serve people on the physical disability waiver and about $41,000 for people with developmental disabilities. He suggested trying to take an equal number of people off each list by spending about $12.4 million on the developmental disability waiver and about $6.4 million for those with physical disabilities.

Rosie Cooper, executive director for the Kansas Association of Centers for Independent Living, said the money should be split equally between physical and developmentally disabled waiver programs.

“Everyone is equally important,” she said. “The need is everywhere.”

While there may be some disagreement over how the money is split up, advocates agree the needs have increased and that the state needs a long-term solution.

“For many years, we’ve seen a growing waiting list, and we need to make sure that people that need services get them and not sit in their mom and dad’s living room,” said Kathy Lobb, legislative liaison for the Self Advocate Coalition of Kansas, a statewide advocacy group for adults with developmental disabilities.

The waiting lists should be eliminated over a period of time to avoid overwhelming the system, said Steve Gieber, executive director of the Kansas Council on Developmental Disabilities, a governor-appointed group that advocates for improvements for people with developmental disabilities.

“Our ability to absorb that many people in the system would be a bit of a challenge,” he said.

Ronda Klein of Topeka said she found out about 18 years ago that her son Curtis had autism, cognitive disabilities and seizures. Curtis, who is now 19 and attended the End the Wait news conference Monday, was on the waiting list for home-based services for 12 years, she said.

Klein said previous governors didn’t address the growing waiting lists, and she said Brownback’s decision is a “great first step.”

Even if the state had enough people to deal with those on the waiting list, there could still be problems, she said. She said her provider gets paid $9.20 an hour and has no medical coverage or vacation time.

“And the hours ... are in the evening and on the weekend,” she said. “It’s very difficult to call that a profession. So it’s a quandary. How do you get people into those jobs?”

But helping more people could also create jobs and help the economy, she said.

In mid-April, the Kansas Department for Children and Families and Department for Aging and Disability Services reported that 8,372 people were being served by the home- and community-based services waiver for people with developmental disabilities.

Of that, 1,254 people were waiting for additional services, and 2,901 people were on a waiting list for services.

Meanwhile, 5,911 were using services for physical disabilities, with 2,642 on a waiting list.

The state’s waiting lists have been under scrutiny for years as they have grown since about 1997, the last time advocates say the state had no waiting list.

Last year, the U.S. Department of Health and Human Services referred a civil rights case to the Department of Justice for further investigation after complaints that Kansans were not getting in-home or community-based services intended to keep them out of institutions when possible.

Brownback’s administration blamed the waiting lists on the economic downturn and the policies of past governors.

Last year, the state had trimmed its waiting lists by more than 1,000 people after it paid for a telephone survey of those on the lists and couldn’t reach many people or found that those people no longer wanted to be on a waiting list.

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