By Dave Ranney

KHI News Service

July 16, 2008



TOPEKA In Kansas, 141 autistic children are on a waiting list for Medicaid-funded services designed to lessen the brain disorder"s toll on their development.

"These are real kids, who, with early intensive intervention, would have at least a 50-50 chance of going into regular education when they reach the age of five," said Bill Craig, chairman of the Kansas Autism Task Force. "Without that intervention, we know for a fact they will need special education."

Special education classes are considerably more costly than regular education classes.

Thirty-eight of the 141 children on the waiting list are 5 years old. When they turn six, they no longer will be eligible for the services; instead, they are expected to enroll in public school special education programs.

"They will have "aged out," they will have missed the boat," Craig said after a task force meeting Wednesday. "And even if the Legislature does the right thing next year and expands the program, these kids are already casualties of a Legislature that, frankly, didn"t have its priorities straight this year."

Earlier this year, the task force urged lawmakers to expand the state"s Medicaid waiver to cover 100 autistic children the 25 slots approved in 2007 plus 75 more. The expanded program was expected to cost $2.5 million $1.1 million for the State General Fund, the remainder in federal matching funds.

But Gov. Kathleen Sebelius didn"t include the expansion in her proposed budget, and legislators, citing revenue shortfalls, agreed to add 20 slots.

Margaret Zillinger, who oversees the program at the Department of Social and Rehabilitation, said 32 children are currently receiving Medicaid-funded intensive intervention services.

These children"s ages:

* One is 2 years old.

* Six are 3 years old.

* 14 are 4 years old.

* 10 are 5 years old.

* One is 6 years old.

The 6-year-old, Zillinger said, enrolled in the program before the age restriction took effect.

The program"s 45 slots, she said, will soon be filled.

Services for each of the 45 children are expected to cost between $25,000 and $30,000 a year.

The ages of the children on the waiting list:

* 12 are 2 years old.

* 40 are 3 years old.

* 51 are 4 years old.

* 38 are 5 years old.

Noting that more than half the 141 children on the waiting list are at least 4 years old, Matt Reese, director of the Center for Child Health and Development at the University of Kansas Medical Center, said more needs to be done to get the disorder diagnosed earlier.

"The national average for a formal diagnosis is five years. That"s too late," he said. "By then the window of opportunity for early intervention is closing."

The medical center, he said, currently has a six-month waiting list for diagnosis-related evaluations.

Reese said he and his staff met with several Topeka physicians last month in an effort to expedite diagnoses. He"ll host a similar two-day meeting later this month in Hays.

Craig stressed that far more than 141 children are missing out on the much needed services.

"What happens is parents ask about the program and then they hear there"s no money so they don"t apply," he said. "The 141 on the waiting list refers to those who"ve applied, who"ve filled out the paperwork. I suspect there are three or four times that many we don"t know about."

In other action, task force member Mike Wasmer reported that four states Arizona, Pennsylvania, Florida, and Louisiana have passed laws requiring insurance companies to cover therapies for children with autism.



A similar initiative stalled in the 2008 Kansas Legislature.

Wasmer said his task force subcommittee would propose a bill similar to one passed in Pennsylvania that would include coverage caps and would not apply to businesses with fewer than 50 employees.

"We have to do that to get around the opposition of the small-business interests," Wasmer said.

-Dave Ranney is a staff writer for KHI News Service, which specializes in coverage of health issues facing Kansans. He can be reached at dranney@khi.org or at 785-233-5443, ext. 128.