Autism advocates fight for funds

The explosion in autism-spectrum diagnoses caught officials off guard, one says.

COLUMBUS (AP) — Smiling and almond-eyed, Down syndrome children such as Peter Crawford once typified the face of special education.

Now it belongs to his autistic brother. With an explosion in diagnosis, public-awareness campaigns and even benefit rock concerts, the spotlight clearly has settled on this complex disorder.

But just as there is no particular appearance associated with autism, Ohio’s plan for helping such children follows no particular path.

Marie Crawford of Columbus is among parents who say they know this much about the approach so far: “It isn’t fair.”

Under the current system:

UA private autism center in Franklin County consumed 50 percent of the public money spent on psychiatric treatment for autism last year even though it served just 4 percent of the children, state officials say. Step by Step Academy also billed $180,000 to treat one child while another family, waiting years for a Medicaid waiver to help pay for services, made do with $672.

UOhio funds scholarships that provide up to $20,000 a year for families to buy educational services for autistic children but offers nothing similar for those with cerebral palsy, Down syndrome or other forms of developmental disability.

UPublic school districts lost nearly $11 million in state money that went to fund the scholarships for about 730 children last year, according to a report released this week by Policy Matters Ohio, a Cleveland research group. Policy Matters also says the program disproportionately helps the affluent, supports centers that only a select few can get into and isn’t accountable to taxpayers.

State officials acknowledge the uneven landscape.

“Autism and autism spectrum disorder is something that, to be blunt, snuck up on us nationally,” said Kevin Aldridge, an assistant deputy director at the Ohio Department of Mental Retardation and Developmental Disabilities. “Like a lot of states, we’re quite frankly trying to catch up.”

Aldridge told Crawford and other parents at a conference last week that any new plans must address equity. “It’s not all for some and none for some,” he said.

Crawford understands that better than most.

“I have two kinds of kids,” she said.

Peter, who recently celebrated his 17th birthday, was born with serious medical problems in addition to Down syndrome.

Patrick, 14 and severely autistic, doesn’t speak. He has been toilet-trained for just one year.

Autism disorder varies widely. Some children appear locked in a silent, impenetrable world, while others communicate and perform well academically but cannot relate to others socially.

Kathi Machle knows all about the search for a key to her 17-year-old son, Kieran.

“It’s the Pinocchio thing,” said the Worthington mother of six. “If we can just get to the right therapy for this child, he’ll be a real boy.”

Because money and access to services are limited and few insurance companies pay for autism treatment, families try to cobble together the public and private resources their children need.

Parents shop school districts, move around, sink into debt and see their marriages fall apart, all while “looking for that pot of gold that’s going to make the difference,” said Pat Cloppert, president of the central Ohio chapter of the Autism Society of America.

They also are forced to compete, sometimes bitterly, for the limited number of Medicaid waivers granted to pay for private treatment and home care. Waivers, whether for the elderly or for disabled children, allow recipients to receive services without requiring them to live in a nursing home or an institution.

“A lot of it is timing,” said Machle, who has been on a waiting list for years. “It’s not like they take the next 30 in line. ...

“It’s who is there first, screaming, ‘This is an emergency!”’

The clash between need and resources came to a head recently over the treatment costs at Step by Step Academy, a private autism center in central Ohio.

State officials say that Step by Step was billing Medicaid the psychiatric-services rate — as much as $92 an hour — for nearly everything, when oftentimes an $18-an-hour therapy rate should have applied.

State lawmakers responded last month by changing some of the rules for Medicaid coverage of autism. The shift, effective July 1, is meant to keep Step by Step, or anyone else, from billing for full-day services at the psychiatric rate.

Step by Step is designated as a mental-health facility, so its Medicaid bills went through the Alcohol, Mental Health and Drug Addiction Board of Franklin County, which had no choice but to pay. Of the more than 21,000 Medicaid billings the board processes each year, “the top 26 or 27 all came out of Step by Step,” said David Royer, head of ADAMH. The average cost per child was about $45,300; the highest, more than $180,000.

“We took these issues to the state because they were so dramatically different from anything we’d ever seen,” Royer said.

The center, which is not residential, was paid more than $2.6 million in 2007 for “community psychiatric supportive treatment” — known as CPST funds — for 42 children, the state said.

The other autistic children treated with CPST funds in Ohio last year — all 1,074 of them — accounted for a little more than $2.6 million.

“That’s an equity issue,” said Scarlett Bouder, spokeswoman for the Ohio Department of Job and Family Services.

Step by Step’s administrators did not respond to attempts to discuss their billing. In an e-mail, they asked that a reporter talk to parents.

By contrast, Helping Hands, a private treatment center in Columbus that serves autistic children in full-day programs, charges about $25,000 per year. “We do one-on-one therapy, too,” said Erin Nealy, one of the directors. “It doesn’t have to cost that much.”

Margaret Granger of Columbus, a parent whose 10-year-old son attends Step by Step, said parents feel caught in the middle. She said director Michele LaMarche has said the center will close.

“He was improving at Step by Step,” Granger said of her son. “I understand that it’s expensive. It’s worth it.”

When the man saw the “Autism Awareness” lanyard around Marie Crawford’s neck, he offered condolences.

“I heard about your funding cuts,” he said. “Are you really upset?”

Crawford said she realized he was talking about the Step by Step flap, which had been in the news.

“No,” she said. “I’m excited. I’m frustrated by the process and the system that we have right now. Maybe this is a chance to get it right.”

Crawford thinks Step by Step took advantage. She also doesn’t have an autism scholarship for Patrick, partly because she thinks vouchers hurt public schools and partly because she can’t fathom securing money for one of her disabled sons and not the other. Patrick attends West Central, a school operated by the Franklin County MRDD board; Peter goes to Centennial High School.

“Years ago, parents of disabled kids were fighting for inclusion in the public schools,” she said. “Now, it seems like a lot of them are fighting to get out.”

Her family was lucky enough to get a home-care waiver a few years ago. Crawford uses it to pay for a few hours of after-school help with Patrick and Peter, at a cost of about $18 an hour. “That has allowed me to work again,” she said.

John Martin, director of the state Department of Mental Retardation, said officials know that better collaboration and oversight are needed to serve Ohio’s school-age children with autism, the vast majority of whom attend public programs. Policy Matters said 9,127 students had the diagnosis in 2006, nearly 50 times more than in 1995.

“We, as an agency, are trying to take the lead in putting the pieces together,” Martin said. “There should be one place where it’s coordinated.”