Kansas continues to have a lengthy waiting list for services for people with disabilities, but advocates are hoping the list will be addressed thanks to a clause in KanCare that earmarks savings for disability services.
According to the last report issued in May 2012 by the Kansas Department of Social and Rehabilitation Services, 4,994 Kansans with developmental disabilities were on a waiting list for services, and some have been waiting for more than eight years. They’re waiting for services like residential and employment support, respite care and personal assistance.
People are placed on the list in the order they request, but limited funding has slowed the number of people coming off the list to under 100 a year, with around 300 being added in the same time period.
A TALE OF TWO BROTHERS
Angelina Vaquera-Linke lives on Wichita's west side. Her son Oscar has been on the developmental disability waiting list for four years. Oscar and his older brother Aubrey both have high-functioning autism, but their paths so far have been very different.
The Vaquera-Linkes moved to Kansas from Georgia four years ago, but Aubrey stayed behind with his grandfather to continue to receive state supports through high school. Oscar came with his mom and dad to Wichita and was plopped onto Kansas’ waiting list. Before he had services through the state of Georgia.
"I was told it would be 4 to 6 years and that really broke my heart and made me incredibly worried for him," she says. "I just want him to have that chance... to have the ability to be as functional as his brother is now, and I see that that opportunity might be slipping away."
Vaquera-Linke says programs provided in Georgia allowed Aubrey to develop social and communication skills, make friends, and learn to be independent. By his senior year of high school Aubrey had come so far he didn’t need special education classes. Today, he is studying mechanical design drafting at Wichita Area Technical College.
She says she wants a similar future for her younger son, Oscar.
"I feel like people really don’t understand how crucial it is that he gets what he needs at the time that he needs it," says Vaquera-Linke. "That was there for Aubrey, and he has really blossomed into the person that I think he was put on this world to be."
Vaquera-Linke says she knows the support services are expensive, but not nearly as expensive as not having them. Without the proper interventions and supports at the proper time, she says, Oscar could need government assistance until he dies.
Expense is, of course, the main reason the developmental disability services waiting list is so slow moving in Kansas.
Tim Wood, manager of the End The Wait campaign says money is still tight, even as the country moves out of recession, mainly because of the tax cuts spearheaded by Gov. Brownback and passed by the 2012 legislature.
"That put things into a bind in terms of how we want to work with the state in getting folks moved off the waiting list," he says. "But the upside to that is that the governor implemented his KanCare program."
KanCare privatizes the state’s Medicaid system, and is projected to save the state $1 billion dollars over the next five years.
When the federal government approved Kansas’ application to implement KanCare they did so under a set number of special terms and conditions. According to Wood, one of those conditions could be the answer to the waiting list problem.
"It basically says that the Medicaid agency for the state will designate a portion of the savings through KanCare’s implementation to increase the number of slots for waiting list waivers," he says, "and this is what we believe is a piece of the puzzle to eliminate the developmental disabilities waiting list."
It’s only piece of the puzzle because legislative support is still needed to capture those savings and direct them to the waiting list. Something that might not be so easy.
"From all the conversations that I have had individually with legislators, I have never been told that they weren't interested in this population," says Wood. "But when the rubber meets the road I have yet to hear anybody come up with any language or what have you, to put into a bill."
The clause in the KanCare agreement, says Wood, is an opportunity served up on a silver platter; the state just needs to take action.
COUNTING ON THE LEGISLATURE
Rep. Brian Weber, a Dodge City Republican is on the social services budget committee. He says they have been looking into new approaches and options for addressing the waiting list, and one option would be to create a fund to capture some of the KanCare savings.
"We have and are already developing methods and strategies to address the waiting list without this fund," he says. "I don't want there to be misunderstanding that without this fund there isn't going to be any attention placed on the waiting lists."
Rep.Weber says the waiting list is an important issue, but it all has to be taken into the context of the budget situation they are facing this year.
Tim Wood with the End The Wait campaign says if a fund isn’t created he fears the money will be lost to the general fund and never used to take people off the list.
Wood says the terms and conditions are clear, KanCare savings should go to people with developmental disabilities.
What's not clear is how much and when, but Wood the Vaquera-Linkes, and thousands of other Kansans are counting on legislators to figure that out.