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"Compared to other counties and states, we're definitely lacking," said Shaffer. "There are so many families that are doing home-based ABA programs. When their child reaches school age and still needs ABA, what are they going to do? There are no ABA classrooms. CMS is simply not providing it. They (CMS) might argue that point and maintain that they're training the teachers, but it's just not happening."
Of course, for every study touting the benefits of one therapy, there is a contradictory study claiming another one is superior. Experts agree that each person with autism is an individual, and that it's a mistake for people to become emotionally wedded to one program if it blinds them to the possibility of other treatments. Most experts agree there is no "cure" for autism. However, many of the symptoms lessen as the child ages; others may disappear altogether. With appropriate intervention, many of the associated behaviors can be positively changed, even to the point, in some cases, that the child or adult may appear to no longer have the disorder.
While the overall expense will vary depending upon what service provider you have, how many tutors you hire, and the hours of therapy, the average ABA home program can cost anywhere from $25,000 to $60,000 a year. Consultants can cost anywhere from $80 to $150 an hour, and therapists charge anywhere from $8 to $18 an hour, depending on their training and the program. Making the financial burden heavier is the fact that most insurance companies don't cover autistic-related therapies. Moreover, state budget problems have delayed or cut what little funding there was, including Medicaid and other public services."Many insurance companies see autism therapy as an educational service," says Shaffer. "They recognize occupational therapy, physical therapy and speech therapy, but not educational. It's kind of warped. If you can't educate these kids the way they should be educated, it's going to end up costing the state more money in the long run because these kids are going to end up in group homes and assisted living programs."
Christa Tickle and Danielle Powers are two parents who are dealing with the high costs of caring for their autistic children.
"We spent $33,000 last year, which includes the cost for consultants and therapists," says Tickle, whose three-year-old son, Pierson, was diagnosed with autism about 18 months ago. "We exhausted our bank accounts, sold one of our cars and borrowed from family members. We've basically used every resource we had, and have just about run out."
Danielle Powers' son Jason, 3, was diagnosed with autism about six months ago. She, too, has been hit hard by the financial burden of therapy. "We've sold our cars, I've delivered pizzas, newspapers. We'll go bankrupt if that's what it takes."
Folks like Powers and Tickle are both looking to proposed legislation being championed by state Rep. Martha Alexander, D-Mecklenburg, to improve insurance company coverage. The legislation is currently in subcommittee.
Although Tickle and Powers are not part of the lawsuit against CMS, they are in the process of starting a non-profit organization in Charlotte that will help fund treatments and therapies for autistic children. For more information, call (704) 392-2468, or go to: www.ticklefoundation.org.
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