Fighting for treatment: Parents want more help with autism care
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| Ryan Prewitt photo Angie Rhodes holds Vivi, 4, on her lap while playing a game called special delivery. The game is working on Vivi's ability to understand non-verbal expression. |
The Rhodes, who live in unincorporated St. Charles County, entertained the idea Vivi could be an astronaut, or president, but then, she was diagnosed with autism.
"Not only is she not going to be a president, she's never going to have a friend," Jim Rhodes recalled thinking.Then they found out that if Vivi could get between 30 and 40 hours of intense therapy, she might be able to pass for normal.
But when the couple tried to get their insurance company to pay for that treatment, their claim was denied.
The family was devastated, Jim Rhodes said.
"You are so worried about your kid, you want to focus every fiber of being directly to help your child, not to fight the bureaucratic establishment," he said.
Some advocates for people with autism are lobbying for legislation to compel insurance companies to cover more care for patients like Vivi. But many in the insurance agency say responsibility for such therapy should rest on schools, not insurance companies.
In the meantime, parents of children with autism struggle to help their children and stay financially afloat.
"Because of the cost of some treatments, families either forgo them or go into deep, deep financial crises," said Rebecca Fehlig, spokeswoman for a New York-based group called Autism Speaks.
Fehlig is part of the St. Louis branch of Autism Speaks.
Fehlig's organization is making it their goal to lobby for legislation mandating health care coverage of Applied Behavioral Analysis treatment, or ABA.
ABA treatment was developed in the early 1980's and is adapted from the work done by behavioral psychologist B.F. Skinner.
It is a way to change antisocial behavior through prompting, repetition and different forms of reinforcement.
The treatment essentially retrains a child to interact with others.
Autism advocates like Fehlig equate ABA treatment with psychological -- or medical -- care that should be covered by insurance. Some health insurance companies categorize the treatment as educational, not medical.
So far, five states have enacted bills promoting reforms for autism coverage, Fehlig said.
Anne Roux is a spokesperson for Missouri Families for Effective Autism Treatment.
Currently, there are five bills that have been introduced into the Missouri Legislature, but none have gained momentum yet, Roux said.
Several of the bills are designed to compel insurance companies to pay for autism care.
"Likely, in the future, we'll take a position," Roux said.
Roux said parents with insurance spend up to $50,000 to pay for treatments for children with autism.
Roux said currently, many insurance companies qualify autism as a developmental disorder.
Groups like the ones Roux represents are lobbying for is to categorize autism as a neurobiological disorder.
"It's an important distinction," Roux said.
Catorgorizing autism as a neurobiological disorder implies children can improve with treatment, and care should be covered, Roux said.
PARENTS: INTERVENTION CAN WORK
O'Fallon mother Shelley McGuire said she believes early intervention has given her 5-year-old daughter Maddison a second chance.
"I really didn't think my daughter would ever have a future." McGuire said. "Those dreams disappeared at three and a half."
Maddison had early intervention with First Steps, which was paid in part by insurance, and now has a normal I.Q.
First Steps is a state program in Missouri that helps children with disabilities obtain early care from infancy to the age of three.
Insurance no longer covers the behavioral treatment, so the McGuires pay out of pocket.
Maddison's improvement has changed the family's feeling of hopelessness, McGuire said. With treatment, she could almost see her daughter shedding the interior barriers that had kept her from interacting with the rest of the world, she said.
McGuire said her daughter is typical in a lot of ways. She tells stories, plays imaginatively and loves cartoons, like Spongebob Squarepants and Dora the Explorer.
"It's like she's the poster child for early intervention," McGuire said.
Emily Kampeter is a spokeswoman for the Missouri Department of Insurance Financial Insitutions and Professional Registration. The department regulates insurance companies.
In Missouri, Insurance companies are compelled to pay for a portion of ABA through the First Steps Program, but after the age of three, that mandate ends, Kampeter said.
Most insurance companies provide some care, under the Mental Health Parity Act, Kampeter said.
The parity act mandates insurance companies cannot put limits on mental health care where they don't have limits on other types of care.
MANDATES RAISE COSTS
The insurance industry opposes such mandates, said Susan Pisano a spokesperson for America's Health Insurance Plans, a group that represents health insurance companies.
"The cost of mandates cumulatively gets passed onto employers and consumers and it's made it much more difficult for employers to afford the cost of insurance," Pisano said.
Pisano said there has been a shift in government to force insurance companies to provide programs that were previously covered by the schools.
The Fort Zumwalt School District has programs that provide behavioral therapy for autistic students depending on their needs, but these sessions are less intensive than those provided by one-on-one therapies.
There is a fine line between medical needs and educational needs, said Richard Craven, assistant superintendent with the Fort Zumwalt School District.
"They're really two separate issues, one is a medical issue, the other is an educational issue," Craven said.
Craven said because every child with autism learns differently and has rapidly developing needs, no one therapy will work for every child.
For example, Maddison McGuire's food therapy sounded like a clearly medical need, Craven said.
The McGuires are trying to coax their insurance into covering Maddison's food therapies.
Maddison has a problem with food textures and often refuses to eat. Her mother said the insurance company will not pay until Maddison starts losing weight.
"The parents are receiving some type of coverage, but not the coverage they want," Kampeter said.
O'Fallon parent Mindy Leatch's 3-year-old son Brandon also has autism. Unlike the Rhodes and McGuires, the family's insurance does cover Brandon's behavioral treatment, but the waiting list to work with the providers will insure is prohibitively long, Leatch said.
"Getting them to do it in a time relative to you is hard," Leatch said.
Because insurance isn't able to cover a care-giver for Vivi, Angie Rhodes said she may never be able to return to full time work.
The cost of a caregiver would be more than Angie could earn as a librarian, even with the financial help they receive from the St. Charles County Developmental Disabilities Resource Board.
Vivi talked to a reporter several times while her mom was being interviewed.
"I want to wake up and go to sleep and eat my snack," Vivi said.
Jim Rhodes said his daughter has problems with social interaction, but with therapy, she is able to give scripted responses.
"She wants to talk to you, but she doesn't know how," Jim Rhodes said.
