The Autism Treatment Acceleration Act and the Autism Sandbox

07/01/2009 05:12 am ET | Updated May 25, 2011

For years, medical professionals and educators have hailed the successes of early intervention for children with all manner of challenges. For children with autism, those challenges often require years of painstakingly, patient individualized therapy to begin to improve their symptoms. For an average of one in 68 families nationwide, finding quality treatment for their child with autism, much less paying for it, is a daunting task - even when they have healthcare coverage.

Despite dutifully paying premiums to insure against the unthinkable that their child could be diagnosed with a disease or disorder, most parents of children with autism cannot get appropriate coverage to treat their child's medical conditions. Not because these parents didn't act responsibly and do their part but because insurance did not do their part. In addition to paying for premiums to cover basic medical care for appendicitis, strep throat or a broken arm, these parents pay for medical interventions out of their own pockets, often in excess of $50,000 a year.

If you are diagnosed with heart disease, cancer or diabetes, the top three health conditions adults face, you expect your insurance company to cover the doctor prescribed treatment. Autism affects more children than cancer and diabetes combined - yet when it comes to paying for treatment, families are on their own. They dangle by a single-strand financial thread on the verge of bankruptcy in an attempt to give their children a better life because the system they have invested in to protect them has intrinsically failed.

Why should you care about their plight as an average tax paying citizen without a child with autism? It directly affects your own checking account.

Every child in this country diagnosed with autism costs society an average of $3.2 Million for a lifetime of care above and beyond what a family pays - a cost that can be significantly reduced with appropriate intervention. With a minimum of 72 children diagnosed for every 24 hours that rolls off the clock, $230 Million is added daily to the bottom line for society 365 days a year.

At this writing, eleven states stepped up to the plate enacting laws requiring insurance companies to live up to their purpose and design - to pay for interventions that ameliorate these children's diagnosed medical condition improving their quality of life. Two other states passed legislation which sits on their Governor's desks awaiting signature. What sets this policy apart from standard insurance parity is that these laws require coverage for Applied Behavior Analysis (ABA) therapy, one of the most expensive forms of autism therapy which is not used to treat any other medical condition.

Play is the work of children and teaches them more things than you may realize. Through play, we learn about the world and how to get along with others. We learn how to navigate difficult situations and handle our fears. We begin life playing alongside our peers in parallel play that allows us to interact in an extremely safe way - indirectly. As we mature, we develop creativity that allows us to invent solutions to age old problems or engineer bridges, dams and trips to the moon.

What do you do when your child's play is paralyzed?

We have spent countless hours teaching my son, Liam, who has autism how to play. The first lesson we repeated for nine months in a three hour session each day until he learned it. Little Fisher Price People walk up three stairs of a slide saying "Up! Up! Up!" then "WHEEEEEEE!" as they would slide down. All in all, teaching Liam how to do this was nearly a $10,000 investment out of pocket but it created a building block on which to learn - it created imitation.

As an ordinarily inherent part of the developmental process for most children, grasping the imperative concept of teaching a child to play is difficult. Pretending to eat a thick slice of veggie plastic pizza and say, "Yum! Yum!" Dressing Barbie dolls to sharpen his fine motor skills. Showing him what to do once you get inside the Little Tykes playhouse. Building with blocks instead of picking up the container and dumping them onto the floor repeatedly.

One of our measurable goals for a full twelve months was "Liam will be able to stack four blocks on top of one another." Once that was mastered, he had to stack the blocks in patterns matching his therapist demonstrating what we soon realized was an endless stream of building blocks for a life a long way from mastery.

Over eleven years, thousands of dollars and hours spent on intensive biomedical, behavioral and sensorial early interventions made it possible for Liam to sit quietly in his room as he did this afternoon, unattended, creating Lego buildings for imaginary people. Downstairs, I smiled listening to the chatter upstairs and called to him. He yelled back, "Oh Mom, it's ok! I am just busy playing." I tiptoed upstairs hoping I wouldn't walk in on an overflowing bathtub or shaving cream smeared all over the place only to find him hard at work using his acquired skills to navigate his Lego people through social situations.

Practice up there on the floor of his bedroom might just make perfect on the playground at summer camp next week.

Learning play skills and building on them have helped Liam to perform tasks like taking real food, putting it into a pot and cooking it - just like any other child. Now that he is a mere five years from official adulthood, we have put the plastic food aside so that he can learn how to cook for himself. Thanks to the movie Ratatouille, Liam loves to assist in the kitchen during dinner preparations chopping vegetables for a salad or cooking on the stove. Without that seemingly crazy goal of block stacking years ago, his ability to imitate what he saw in an animated movie and bring that to life in our kitchen might never have developed.

No one would dream of treating a child with a life threatening illness at any less than what the doctor recommends. No one would ever expect that the public education system to be responsible for curing that disease and yet, insurance companies do just that...shirk their accountability to the education system instead of providing children with appropriate coverage when they are toddlers making them more likely to be mainstreamed into a regular education setting. Providing access to these treatments saves tax payer's dollars, creates new job markets and most importantly, gives these children an opportunity to become tax payers themselves one day with independent lives via a fiscally responsible solution to a growing societal issue.

Regardless of our personal beliefs of the etiology of our children's autism, whether it is genetic, environmental or a combination of both, all children deserve access to treatments that can help them. The financial relief that this will provide to families is unprecedented - including coverage for ABA, speech and occupational therapy, psychological and psychiatric services, pharmacological interventions, along with anything prescribed by that child's doctor that is evidence based and medically necessary for treatment. Coverage like this frees up money to pay, albeit still out of pocket, for interventions mainstream medicine has yet to adopt while we wait for scientific research to catch up with what we observe in our homes.

What good is research resulting in treatment protocols that cannot be implemented to help a child's medical condition because their parents cannot afford it?

Liam still acquires skills daily through ongoing treatment, piece by piece, block by block. Science continues to get closer to the answers to his condition daily, piece by piece, block by block. Finally society is stepping up to the plate and relieving financial distress that families have endured for decades by ending this discrimination and implementing fair coverage, piece by piece, block by block and state by state.

If you live in one of the 37 states that have not required insurance companies to end their discriminatory practices and provide access to the medical intervention your child deserves for the insurance premiums you pay each month, OR if you live in a state where enacted laws do not govern the self-insured company for which you work, you can change this practice. Ask Congress to co-sponsor the Autism Treatment Acceleration Act (S.819 and H.R. 2413)introduced by Senators Richard Durbin (D-IL), Bob Casey (D-PA) and Robert Menendez (D-NJ)and Congressmen Chris Smith (R-NJ), Mike Doyle (D-PA), Eliot Engel (D-NY) and Hank Johnson (D-GA).

For more information on the autism insurance reform movement and what you can do, visit Autism Votes to learn more about the Autism Treatment Acceleration Act.

If the autism community can use what we learned as children to play nice in the sandbox, share our toys and keep from fighting, imagine what we could accomplish.