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Health Reform, ABA And A Mom From Texas

In this post, a Texas mom, Jill shares her family’s experience enrolling her two sons in new “child-only” health insurance plans through www.healthcare.gov. To learn more about the new coverage options available to your family, visit this resource.

Our family’s journey with autism began after my older son, Alexander [foreground, below], was diagnosed shortly after his third birthday. He had been in speech, occupational, and physical therapy since 21 months of age, but obtaining a formal autism diagnosis was a lengthy process. Only three months later, our younger son, William, received a provisional autism diagnosis. He was a week away from turning 13 months old on the day of his evaluation. A baby. My baby.

We were overwhelmed but determined to make sure that our boys received what they deserved: the best care possible.  Even though my husband and I were both employed, had health insurance, owned our home outright, and had always saved more than we spent, nothing could have prepared us for the staggering costs of treatment in the recommended amounts.

We had already been providing Alexander with speech, occupational, and physical therapy to the tune of approximately 20 hours a week prior to his diagnosis. Much of this was not covered by insurance since we had a limited number of allowable visits for each type of therapy.  Alexander’s progress was slow and we were increasingly desperate. 

While much of what was said to us in his formal autism evaluation meeting is a blur, I scribbled the term “ABA therapy” on my notepad and underlined it. The lead psychologist suggested we get him as many hours of it as possible. At William’s evaluation, we received the same advice. 

In the days after Alexander’s diagnosis, we learned that our health insurance did not cover applied behavior analysis (ABA) therapy even with an autism diagnosis. We soon found ourselves paying more than $30,000 per year for just Alexander’s treatment. Yet the results were nothing short of miraculous: with only six hours of ABA each week, our little boy (in the bottom 1 percent for receptive and expressive communication at age 2) was suddenly testing within the average range for language and even slightly above the standard mean for expressive language. He was talking to other children, playing imaginatively, asking questions, and expressing opinions and thoughts constantly, even talking about feelings!

It's Like He's A Different Child

Over and over again we heard the words, “It's like he’s a different child.” At the same time, we began an evidence-based ABA model with William whose development began to literally explode as well. Within three weeks, we had pointing and unprompted single word approximations.

As the weeks passed, it became clear that our boys had to continue ABA therapy—and needed as many hours as possible. Yet we soon learned that the treatment at the psychologist-recommended facility was going to cost $58,800 per year per child. At a total annual cost of $117,600 for our family, this was impossibly expensive despite how careful we had always been with our finances.

We began to feel the agony of helplessness that autism parents face all too often when their children desperately need something that will change the entire outlook of their future but is just out of reach. We put the boys on the waiting list for the facility and started trying to figure out how we were going to pay for it. 

Leaving no stone unturned, we decided to learn more through www.healthcare.gov about the new health insurance options available in Texas. We knew that there was a mandate for marketplace plans in Texas to cover ABA and quickly realized that we could purchase a “child-only” plan (an individual plan for children under age 21) for our boys that covered ABA. (Speech therapy is also covered without a cap under our state’s autism mandate.)  We contacted an insurance broker, Jason, who assisted us greatly in sorting through the many plans available. With his help, we narrowed our selection to a few plans that we thought would provide the coverage our boys needed.

Doing The Math

Unsure of how the child-only plans would actually work once we started using them, we purchased a different plan for each boy and pay combined premiums of about $460/month for 2014. These policies have literally been a godsend. Both of our boys have been able to receive 35 hours of ABA each week. Our monthly costs for our older son have dropped over 95 percent—from $4,900 to $214 (including the monthly premium)—and we are saving more than 84 percent on our younger son’s therapy as well (his monthly costs dropped from $4,900 to $770, including the monthly premium).

Most importantly, the results for both boys are nothing short of amazing. Our older son Alexander was moved up to the upper class at the facility after only two months and is on track to mainstream for kindergarten in two years. Our younger son William is also now testing within average range in his expressive and receptive communication. His imitation, play and social skills are all at age-level. Because William was identified so young and began intensive, effective intervention so early—at the age of 16 months—he is not experiencing the “skills gap” that is usually apparent and widening at this age in children with autism. 

All in all, these child-only plans are changing the course of my children’s future. The coverage allows them to receive the evidence-based therapy that they need, significantly and tangibly improves their chances for an independent and productive future, and reduces the cost of their future care needs. And, as a bonus, with the boys in full-time therapy, I’ve been able to go back to work part-time and we have been able to start college funds for both.

You see, that particular hope for our sons had dimmed to barely a flicker when we received both diagnoses within a three-month period. Seeing their rapid response to therapy has given us renewed hope. We are working hard, so very hard, every day, but we’re back to dreaming of a bright future too. 

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.