Nov 4, 2013 11:31 AM by Maddie Garrett
The Affordable Care Act, also known as Obamacare, is supposed to make getting health care easier and cheaper for many Americans. But families who have children with autism that's just not the case, especially here in Colorado. One in 80 children has autism in our State, and getting therapy for those children with autism just got harder and much more expensive.
For mothers like Ramona Smith from Falcon, the amount of therapy she can get for her two boys is going down because of new insurance rules.
"I still feed Robert, he doesn't eat on his own. I still dress him, he doesn't dress on his own," said Smith.
Taking care of her two sons, ages five and six, is a full time job. They both have autism and need a lot of care.
"I feel like I'm in this huge ocean all alone with no help," said Smith.
She's a single mom and doesn't work in order to care for her boys. She did have insurance through Cover Colorado, but the insurance company has since cancelled all of its plans because of the Affordable Care Act.
"I don't know what will happen if I don't get insurance, they won't get autism treatments, Robert will most likely regress. And I guess I'll have to live with that and I don't know if I can do that," she said.
Smith qualifies for Medicaid, but like many parents of children with autism, she doesn't want it. That's because Medicaid doesn't cover Applied Behavior Analysis (ABA) therapy.
ABA therapy is the most successful and scientifically proven therapy for autism, endorsed by the Surgeon General, the American Academy of Neurology, the Autism Society of American and many others.
"I don't understand why it is that we have medically proven therapy for autism and we can't get it," Smith said.
But because she qualifies for Medicaid, Smith can't get any of the subsidies under the Affordable Care Act. She's finding plans under the new health care exchange cost double what she was paying.
"The deductibles on the exchange begin at $4,000 with an out of pocket maximum of $10,000. How would I ever pay that out of pocket?" she asks.
But money isn't the only issue.
The Affordable Care Act eliminates lifetime caps on money for medical treatments. That sounds good to Smith on the surface, but there's a problem. To comply, Colorado passed a law that allows limits on how many treatments or sessions you can get.
But when it comes to autism, the amount of therapy seems to be going down rather than up.
"We're getting 100, 200 calls a month about this," said Kevin Custer with the Autism Society of Colorado.
Custer serves as the President of the Board and works with the national Autism Society. He says in this case, the law doesn't appear to be doing what it was intended to do, which is to increase treatment availability.
"Now there's a gap between intent and practice of it and we have to help bridge that gap," he explained.
Under previous policy, there was a $34,000 limit a year for autism ABA treatments for children 0-8 years old, and $12,000 for children 9-18.
Under the new policy, the Colorado Division of Insurance limits ABA treatments to 550 sessions a year, at 25 minutes each for children 0-8, and 185 sessions a year for children 9-18.
For children like Michael and Robert Smith, that new conversion just doesn't cut it.
Smith said under the $34,000 cap each of her boys received just over 1,747 sessions a year of ABA therapy.
But under the new policy, they would only get 550 sessions, that's just a third of what they were getting. It's a difference of 1,197 sessions.
"Why would I pay a higher deductible, a higher premium for reduced benefits?" asked Smith.
But what, if anything, can be done about this new policy? News 5 went to the Division of Insurance to find out.
When asked to explain why parents are seeing a reduction in treatments under the new rules, Vincent Plymell with the Division explained that it has to do with the conversion the State adopted and the varying costs of treatments from different providers.
"Part of that would be based on costs that providers would charge for a session. Under the old annual dollar limit if they had less expensive providers they might have been getting more," said Plymell.
The Division of Insurance had hired out an independent consulting firm, Wakely Consulting Group, to conduct a study and come up with what's called an "actuary equivalent" to determine how many sessions the $34,000 cap would be worth. Then the Division and interest groups reviewed the recommendation and set in stone the number of ABA treatments to be covered.
Plymell said it could be changed, but not for 2014. While possible, changing the number of sessions covered wouldn't be easy. Plymell said it would likely take a new study and analyzing new data in the coming years. It also takes people like Smith to contact the Division and let them know about the problems they are seeing.
"For future years, everything can be looked at. So again this goes back to please contact the Division of Insurance and let us know if you have concerns," he said.
Meanwhile, Smith and her family are looking for help. One of the agencies trying to assist is the Autism Society.
"We do that with dozens of families every week, try to find an alternate to make it work for them," said Custer.
After News 5 looked into this problem, both the Division of Insurance and the Autism Society have reached out to Smith to try and help her family. While there has yet to be an increase in the available ABA treatments, the Autism Society is working on helping her find other ways to pay for insurance coverage.
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