Share Your Personal Story About the Need for Health Care Reform

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Here’s what I wrote:

<em>Our three year old daughter Rory, has an autism spectrum disorder. We are incredibly fortunate that she is in a 30 hour a week school program that is based on Applied Behavior Analysis (ABA) which is a scientifically proven method to help children on the spectrum improve. ABA is not covered by insurance… they consider it EXPERIMENTAL. If you could see how much Rory has improved since she started ABA therapy in the fall, you would be amazed.

As lucky as we are to have Rory in this program, we run into constant road blocks with our health insurance for other therapies for Rory. We recently visited an excellent developmental pediatrician, but had to pay out of pocket for the visit ($500) because he doesn’t accept insurance. It is too much of an administrative hassle for doctors to deal with insurance companies regarding autism because it’s not considered a medical issue.

Rory would benefit from other therapies such as speech and occupational therapies. The best therapists also do not accept insurance for these same reason, making the costs for the average person too much to bear. Last summer, we found a speech therapist who did accept our insurance, and we have had battles ever since. They only cover the “speech” part of the therapy, not the “cognitive” part required when dealing with children on the spectrum. Additionally, when you find therapists that accept insurance, in many cases they are not qualified to handle the specific needs of autistic children. Last summer, I was looking for an OT who could work with Rory and was told: “You can’t even do occupational therapy with children!!!”

The one thing that I find incredibly frustrating is that my daughter has a major life-altering condition and getting the care that she needs and is another battle to fight. Unlike when a child has a more traditional medical condition, parents of autistic children don’t often have one person guiding the care. If Rory had appendicitis, I would take her to a doctor, she would be diagnosed. The doctor would say: Here’s what we are going to do and do it. Then I would be given instructions on how to care for her. With autism, you get the diagnosis and then “BYE!” Parents are left to struggle on their own with how to help their children improve. Unless they have tons of money to throw at the problem and experts to guide them you end up having to read and research and do all the work yourself and guess as best as you can as to what your child needs. It’s miserable.

Fortunately, we have been able to see some great psychologists and have had a wonderful tutor. Rory is in a fabulous school. However, all the extra therapies Rory would benefit from are expensive and not covered adequately.

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