Therapy for autistic kids in jeopardy

By David Steinkraus

Monday, February 23, 2004 12:00 AM CST

CALEDONIA - At the age of 5�, Gavin Schultz has a handle on his ABCs. He doesn't speak as he bounces on a small circular trampoline while holding the hands of Krista Lindemann. The trampoline is his reward, the activity that this autistic child craves after sitting for therapy with

Lindemann.

His parents, Randy and Cindy, both in their 40s, hope their son will someday work through the limitations of an autistic life. At the moment they need hope because concrete support has been problematic.

This summer, under new state rules, Gavin's status as a child eligible for intensive in-home therapy will run out. He will have had three years of such care, and he will then be eligible for a reduced amount of care. Reducing aid, and perhaps their son's future as well, troubles Gavin's parents. But any solution is tied up beyond their reach in the state and federal budgets.

Money talked Wisconsin has been providing in-home, intensive care to autistic children since 1994, said, Mark Moody, Medicaid director for the state Department of Health and Family Services. Wisconsin has a good benefit, he said, one not duplicated by any other states. But it was an entitlement written into law, so people had the right to ask for it, and the state paid.

In 1994, the state spent about $15,000 for those first few autistic children, he said. In the 2003 fiscal year, the state paid $40.3 million to serve more than 1,000 children, Moody said. Had the trend continued, the cost would have reached $55 million in fiscal year 2005, he said.

Because Medicaid costs are shared with the federal government, Wisconsin paid only $16 million of the 2003 total. But with federal money comes federal oversight, and the feds started doubting whether Wisconsin's program should have been funded, Moody said. That meant the federal government might ask for a retroactive reimbursement of the millions it had paid for several years.

In the meantime, Gov. Jim Doyle was trying to solve a $3.2 billion deficit. One of the proposed cuts was the in-home autism program.

The state and a coalition of advocates and autism service providers started talking. They compromised. Based on current research, children are now allowed three years of intensive behavioral therapy because that's the time needed for it to be effective, Moody said. After those three years, children are eligible for help at a reduced level until they reach adulthood.

The in-home autism program (one of several services provided by the state) was shifted to a Medicaid waiver. This removed the threat of retroactive payments, but also the program's status as an entitlement, Moody said. The state can cap its expenditures, he said, while still allowing 250 new children into the in-home program during each biennial budget cycle.

After the compromise, some of the parents involved were upset, Moody said, "and I have to say, in all fairness, they're advocating for their kids and their financial interest."

If parents felt betrayed by the system, it's understandable, said Lynn Breedlove, executive director of the Wisconsin Coalition for Advocacy, which was one of the parties to the negotiations with the state.

And parents are still upset. They're planning a rally in Madison on Thursday.

"It wasn't a surprise for me because I knew how Medicaid waiver programs operate," Breedlove said. "But I think, in fairness to some of the parents, they didn't realize how different their position would be."

"It's all in your point of view. I personally think it was a pragmatic choice." It was likely the best deal possible, he said. The in-home program survived, although it is smaller.

And there were glitches, Breedlove said.

Dear parent The letter arrived at the Schultz home just before Christmas. It announced that the Fond du Lac company that had been providing in-home therapy for Gavin and many other children would leave the business at the end of 2003. The state compromise provided no rate increases for providers, and some people interviewed for this article suggested the company's departure may have been as much protest as it was a business decision.

It was a rough Christmas, the Schultzes said.

They had to find therapists. They had to learn the administrative paperwork formerly handled entirely by the state. And there was a period when Gavin didn't have any therapy because the system was in flux.

"And he's made tremendous gains. There was a kid that had no eye contact, that didn't know his ABCs, 1-2-3, any room of the house or what different objects are in the house or anything, and couldn't be potty trained, and wouldn't sit at the chair for therapy. And now he can sit for two hours," said Cindy Schultz.

The Schultzes were fortunate to learn about the changes in Gavin's program. Other families never received notice that their in-home therapy would end.

"We actually never got a letter from the state. He was so newly started he got lost in the system again," said Paula Herold, 36, of Mount Pleasant. Her 3�-year-old son, Douglas, was diagnosed with autism just last year.

Until his second birthday, she said, Douglas was doing well. He could count from one to 10. Then his speech started to regress a bit at a time. "He could name the characters to his favorite cartoon. It kind of went from being `Clifford' to `Chiff' to `Ch.' We just didn't know quite what to make of it."

"It's just kind of like his disorder collapsed, one by one, the supports that he had built up to process his world."

During a check-up for the Herolds' daughter, 16-month-old Dara, a physician remarked on Douglas' behavior. After a months of testing and waiting, he entered therapy in the fall, only to lose it at the end of December.

For about a month, Douglas, too, was without therapy.

"I'd just see that he was struggling with some basic behavioral stuff over that period," said Steve Herold, 35, Douglas' dad. "Puzzles - he didn't do many puzzles during that time even though I tried with him. He was big into puzzles when he was in therapy. But it was worse when he was out of school and

therapy."

School in this case is the early childhood program in the Racine Unified School District.

Still hoping The Department of Health and Family Services has been instructed by the governor to look again at the in-home autism program, Moody said. But there's a $400 million shortage in Medicaid funding - partly because of an altered federal payment schedule, partly because the stagnant economy has brought more people into the Medicaid program, and the rest due to the cost of services, particularly the cost of prescription drugs, he said.

That budget hole doesn't leave much room for maneuvering, said state Rep. Bonnie Ladwig, R-Mount Pleasant. "They're good programs. People need them, but you can't expand them when there's no money."

We do need more of many things, Paula Herold said - more money, more researchers, more study of these children who can lead us to a new understanding.

"I don't know how much you can learn from a typical developing child," she said.

"It takes a kid who is special, who's maybe on the outside edges of normal, to really teach us the most."

Her son gives her hope, she said, when he hugs his sister, when he tries to articulate the word "car" as he looks at one. "I guess I'm not asking for the sun and the moon and the stars. I'm just kind of asking for a little help keeping that hope going."

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