The Detroit News publishes an article about the Legislation...

Tuesday, February 19, 2008

Parents of autistic kids fight for aid

Controversial bills would force insurers to pay for therapy
Christina Stolarz / The Detroit News

CLAWSON -- Life has been a struggle -- emotionally, mentally, but most of all, financially -- since Bob and Shannon Gougeon's son, Travis, was diagnosed with autism.

Small luxuries they once considered a way of life -- dining out, vacations -- are no longer affordable to the parents who work three jobs between them to pay down the $100,000 debt they've wracked up providing Travis with essential speech and behavioral therapies.

The 6-year-old, who still doesn't speak, was diagnosed before his second birthday with the condition associated with limited communication and repetitive behavior.

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"We continue to try to find ways to pay for stuff to benefit his life," said Bob Gougeon, 34, of Clawson. "It's going to take years and years and years to dig out of the hole we've put ourselves in. But how do you put a price on your child?"

The Gougeons and other parents of autistic children are lobbying state lawmakers for financial relief. Advocates say incidences of the neurological disorder are skyrocketing among young people, from 4,700 cases in Michigan in 2000 to 11,000 in 2006, according to federal statistics.

Arguing that autistic children deserve better coverage, they're backing two controversial House bills that would require health insurers and HMOs to pay for early intervention, behavioral analysis and therapy.

Similar legislation is in effect in at least 13 states, according to the Council for Affordable Health Insurance in Alexandria, Va. But critics say the mandates would drive up health care costs as much as 45 percent, force insurers to pay for treatments that some already cover and may duplicate some services already provided by Michigan intermediate school districts.

Critics say mandates add cost
Foes of the bills also argue that employers should have a say in what to include in policies.

"If they don't have an employee who has a child with autism they may not want this to be part of their benefit package," said Wendy Block, director of health policy and human resources at the Michigan Chamber of Commerce. "We know that each and every mandated benefit would add to the cost of health insurance. It's difficult to say how much."

The average annual total premium cost nationwide was $4,479 for individuals and $12,106 for families in 2007, according to the Kaiser Family Foundation, a California-based nonprofit that researches major health care issues.

But supporters say the bills are crucial because early intervention of autism increases chances of normal futures, said Catherine Lord, director of the University of Michigan's Autism and Communication Disorder Center.

"It's just been a tragedy that they've been deliberately excluded from the insurance coverage," Lord said. "Compared to all the other things people get from health insurance, it's not that much if it could improve the chances that the child would be independent."

Autism is a severe developmental disability -- typically diagnosed by age 2 -- that can cause children to become withdrawn, nonverbal and avoid eye contact. In extreme cases, some hit their heads against walls or hurt themselves. There's no cure, but research shows that early intervention through intensive therapies and other services can improve a child's development, according to the U.S. Centers for Disease Control and Prevention.

Like other Metro Detroit intermediate districts, the Macomb County Intermediate School District offers classes and therapy to its more than 1,000 autistic children, said Beth Alberti, assistant superintendent of special education and student services. Assistance varies by need: Some students may receive occupational therapy on basic skills such as using scissors for 30 minutes twice a month; others receive more help.

"We are not treating autism in schools," she said. "We are really focusing on the educational aspect of the kids." While intermediate districts provide some services, many parents seek additional, more intense programs.

Lord said the out-of-pocket costs parents pay for autism treatment programs, offered at hospitals and community service agencies, vary greatly. Some are as low as $3,000 a year, while others can be as high as $40,000 a year, depending on the length of treatment and intensity.

State Rep. Kathy Angerer, D-Dundee, acknowledged premiums would increase slightly, but argued long-term costs -- including hiring full-time teachers for autistic students and paying for group homes -- would decline significantly.

"The cost of doing nothing for these children is more serious," said Angerer, who is sponsoring the legislation with Rep. Richard Ball, R-Bennington Township outside Lansing.

But foes, including the Michigan Health Purchasers Coalition, counter that the measures would drive up insurance costs for employers and, by extension, employees who are increasingly asked to pay more out of pocket when premiums rise.

"In other states, piling on state health insurance mandates has resulted in many employers dropping all health benefits," Larry Horwitz, spokesman for the group comprised of 40 members that include companies, business associations, labor unions and about three insurers. "There's scarce money, and you can't do everything that everybody wants."

Mandates can boost policy costs 20 percent to 45 percent, depending on the state, according to a study by the Council for Affordable Health Insurance.

Blues oppose bills
Michigan's largest insurer, Blue Cross Blue Shield of Michigan, opposes the mandates, but now pays for multiple autism services, spokesman Jon Ogar said in a statement. For example, an initial speech therapy evaluation is covered under most benefit plans, as are follow-up speech therapy services if it's determined that the child has a chance to improve or restore verbal function.

Since Travis Gougeon has participated in the intense one-on-one applied behavior analysis therapy, his parents say he's made tremendous strides -- he can recognize letters in his name and will sometimes sit and color. But at a monthly cost that ranges from $1,200 to $1,700, they couldn't afford to keep him enrolled.

Health coverage would be considered a "lifeline" that would allow them to continue that service, Shannon Gougeon said.

"I just don't understand why we're unable to get any type of services," she said. Instead, she said, they pay $536 a month for speech therapy and about $200 a month for biomedical vitamins and food that helps him stay focused. Travis also attends the Clawson School District, where he spends three hours a day -- with a teacher assistant at his side -- in a classroom and then receives speech therapy in an autistic impaired classroom.

Parent Cara Culver, 39, has seen her 3-year-old daughter, Judit Beired, make great strides since they began an intensive applied behavior analysis treatment program in their Birmingham home nearly a year ago. The 14-hour a week program -- about $2,000 a month -- has helped her learn how to talk and play.

"I'm very happy with what I've seen. She knows the names of 250 objects and 30 verbs," Culver said. But, "(the treatment) is outrageously expensive. It should be covered, because somebody who smokes, they (add on costs) to themselves. We don't know why my daughter got this."

You can reach Christina Stolarz at (586) 468-0343 or cstolarz@detnews.com.