Life After NICU

ASD and the Search for Appropriate Therapy

I know this is long and full of too many facts, but it’s important to me. Thanks for taking a look.

Last fall, while James was at the Kennedy Krieger Institute, several of the therapist who were working with him had some concerns that they shared with myself and his doctors. Concerns regarding autism. They have a very well-respected Autism Program at KKI, but when I was first approached about them doing an evaluation I said no. I wasn’t interested in a label for James. With further thought and discussion we decided that it was a good opportunity, and if nothing else, would provide us with more information. At the conclusion of their evaluation they diagnosed James with Autism Spectrum Disorder. It wasn’t a surprise to us. We’ve discussed this possibility numerous times with numerous people.

What has been a surprise, is how difficult it’s been to get appropriate therapy for James.

In 2007 a law was passed in the state of Texas that requires health insurance companies to include coverage for the treatment of Autism Spectrum Disorder in their policies. The law was amended in 2009, and again in 2013, to expand coverage and eliminate age caps for treatment. It’s a big deal. One of the most effective treatments for children with autism is ABA Therapy. (The feeding program James attended at KKI that was VERY effective for him was ABA based.) Until insurance coverage for ABA became mandated, it was often unattainable by many because the cost was so prohibitive. This was a huge victory for children with ASD and their families. There are currently 34 states that have some kind of insurance mandate for the treatment of ASD. Seems like it must be pretty important for that many states to pass laws requiring specific insurance coverage.

You know what wasn’t included in the law passed in the state of Texas? Medicaid programs. In the state of Texas, if your child has Medicaid and is diagnosed with Autism Spectrum Disorder, your child’s Medicaid coverage does not include treatment for ASD. In 2012 (the most recent year I could find stats for), approximately 2.36 million children (ages 0-18) were enrolled in Medicaid. The Center for Disease Control and Prevention recently released updated stats regarding the prevalence of autism. They state that approximately 1 in 68 children are identified as having Autism Spectrum Disorder. That’s a lot of children in the state of Texas who are identified has having Autism Spectrum Disorder, but do not have coverage for treatment.

Children have Medicaid for a variety of reasons. The reasons don’t matter. What matters is that the program exists. It should be equitable. And, if you think the answer is to get insurance coverage through Obamacare, it’s not that simple. I applied for insurance coverage for my family through Obamacare in January. After five months of astronomically high premiums to continue coverage through COBRA, we simply couldn’t afford it anymore and needed an alternative. Obamacare seemed to be the answer. When we applied we were told that due to our income (or lack of it) James qualified for Texas Medicaid. Because James qualified for Medicaid, we could not add him to our healthcare plan unless we paid the full premium for him each month. Other states may be different, but that’s how it works in Texas. So James has Medicaid, and what a headache it has been.

Since his coverage began in February, I have called and emailed countless therapy providers, trying to get James signed up for therapy. We have been turned down over and over because many therapy providers (and doctors too, by the way) don’t take Medicaid, at least not his Medicaid. That’s when I found out ABA Therapy isn’t covered by Medicaid at all.

So what’s the answer? I emailed my state senator, Royce West, to find out. A couple of days later I received a phone call from a very helpful person at DARS (Department of Assistive and Rehabilitative Services). There is a program funded by the state of Texas to assist families in accessing ABA Therapy. Perfect, that’s exactly what we need! Turns out there are only three places in the Dallas/Ft. Worth metroplex where James can get ABA Therapy with this funding. When I contacted the center closest to us I found out there is a long waiting list for therapy, sometimes up to a year. The one good thing about their waiting list is that it’s not on a first come first serve basis. They use many criteria to determine which child from the waiting list gets selected for an open spot. You may be on the waiting list a year, or it could be less. You just have to wait and see.

Frustrated doesn’t begin to describe how I feel. How is it possible that my state (along with many others) is choosing to underserve so many children? They understand it’s important – passed a law to force coverage and then broadened that law twice. They fund assistance for children like James, just not enough. We’re fortunate that our situation will change. James will have insurance that provides coverage for his therapy. But what about the thousands and thousands of children in the state of Texas whose situation won’t change? Don’t they deserve access to appropriate therapy in a timely manner? I think the one thing everyone can agree on with regards to therapy is the earlier the better. Nobody should have to wait a year.

I realize there are very few of you reading this blog who are directly impacted by this information. This fight may not be yours. But, I bet most of you know a child who has autism. I bet you know a parent who is struggling. You can do something so very important. You can be the voice for a child who needs someone fighting for them. You can stand with their parent and let them know that this fight matters. If you live in the state of Texas, you can find your representative here. Let them know that children who have ASD and Medicaid deserve access to appropriate therapy in a timely manner. Outside the state of Texas? You can find you state’s mandates for coverage here. Your voice matters. Your voice can make change happen.

 

 

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4 thoughts on “ASD and the Search for Appropriate Therapy

  1. Hi there, I am an occupational therapy student at TWU in Denton. I’m not sure where you are located in DFW, but there is a great clinic in Allen called Cutting Edge Pediatric Therapy that offers OT for sensory and ASD children. Insurance would be an issue at their facility as well, but the couple who own the clinic are parents of two children with ASD and have an immense amount of resources and knowledge. They offer a free service called “Bend an Ear” in which parents can set up a meeting or phone call to ask questions and seek advice. They know of and utilize for their own children many programs that provide funding for services such as ABA, music therapy, massage therapy, etc. I would suggest getting in contact with them to see what other resources are available in the area. The website is http://cuttingedgepediatrictherapy.com/services/

    I hope this helps!

    • Thank you so much for that information Kelsey. I truly appreciate it and will be contacting them soon. We are in south Dallas, but are not opposed to driving a distance to get James the help he needs. Thank you again!

  2. Thanks Alison for sharing this with us. And you are so right, even though we may not benefit from your reseach directly, we all know someone who does need to hear this. A friend of ours fights for help for her 4 year old now. I’ll pass this on to her, hoping that some of your information is helpful to her. Hoping and praying James is eating well, and spring is here!!! Lots of outdoor activities for all of you!!!!

    • Thank you Debbie! James is doing great with his eating. We’re sure the weight gain will come once we get his calorie needs figured out. When I say he’s ‘busy’ they have no clue just how busy he is! Burning calories as fast as he takes them in. We’re loving the outdoors with him, but his allergies are not making it easy. Hopefully we’ll be able to get back out soon!

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