Many of our friends around the country are facing the same issues in their states that we are facing in South Carolina, and, in fact, lots of parent advocates have called us to ask for guidance on introducing legislation in their own states. Below is a letter from a newfound friend, Dianna Varady, pertaining to some legislation in Arkansas that seeks coverage for their kids. I thought this was a great letter and just thought I'd share it here.
Dear Friends,
I am writing to you today to ask for your help. There is a bill going before the Senate Insurance and Commerce Committee soon, Senate bill 93, which if passed, would mandate private insurance coverage for individuals with autism spectrum disorders. Many of you who receive this communication have children with an autism spectrum disorder, and so you will understand the importance of this bill. To those of you who do not have a child of your own suffering from autism, you probably know of at least one other family besides mine who is struggling with the costs of providing adequate treatment and care for their autistic child.
Finding a way to provide proven treatments for our son Bradley has been a constant struggle since he was diagnosed almost 2 years ago. We assumed wrongly that our insurance policy would cover treatment for autism – after all, our insurance covers treatment for other neurological conditions like epilepsy, cerebral palsy, or even depression. We soon learned that this was not the case. Luckily for us, Arkansas allows families with children who are medically needy the opportunity to purchase Medicaid for their child (TEFRA). So, now in addition to our family health insurance premium, we pay a second premium to Medicaid to make sure that our son gets at least some treatment for autism. However, we soon learned that the amount of therapy provided for children with autism via Medicaid funding is woefully inadequate, so we began scrimping and saving to provide additional therapy for our son, and we have become “pseudo” therapists ourselves. Every minute with Bradley is spent working to help him overcome the numerous obstacles he faces: difficulties with basic communication, difficulties with sensory integration (acute sensitivity to sights, sounds, tastes, smells, and touch), difficulty with obsessive behavior and extreme anxiety. There is no pill to address the symptoms of autism – the most studied and most effective treatment is early intensive behavioral therapy – and lots of it.
Some of you with older autistic children might not think that a law mandating private insurance coverage for autism is all that important. After all, your child is in all likelihood covered by Medicaid, and you are facing altogether different challenges for your older child, like mind-numbing IEP meetings, where it feels like every tiny service provided for your child requires weeks, or even months, of negotiations with school officials. Or perhaps your autistic child is an adult, and your main concern is finding a way to integrate your adult child into a society that doesn’t understand and is afraid of some of the odd or troubling behaviors exhibited by autistic individuals. Perhaps you are one of the unfortunate few who are considering a group home for your adult child, or perhaps he or she already resides in a group home. To all of you who have older children I would only say this: How many times have you looked back and said to yourself, “If only my child had received more intensive therapy at a younger age – who knows where he/she would be today.” Studies indicate that 40% of the children who receive early intensive behavioral therapy will improve enough to be considered “recovered”, which basically means they would be indistinguishable from their peers. Another 40% would improve enough to require at least a 50% reduction in therapies – enough, perhaps, to remain in a regular classroom, only to be pulled out occasionally for speech or occupational therapy or other tutoring. Enough, perhaps, to develop the ability to form lasting friendships with their peers, and to go on to live in the community with a minimum need for assistance. So, 80% of the children with autism could go on to become contributing members of society – tax-paying citizens (I never thought that, as a mother, one of the goals for my child would be that he grow up to pay taxes – now I dream of that day). If your child had received that kind of early intervention, where would he/she be today?
To those of you without a child who has autism, I realize that you have little stake in this bill passing or failing. Small business interests and the insurance industry will argue that this insurance mandate will cause premiums to skyrocket and cause small businesses to close. In truth, the insurance industry itself estimates that autism insurance mandates in other states resulted in less than a 1% increase in premiums. As a matter of fact, the now Commissioner of the Indiana Department of Insurance was a state representative at the time that the Autism Insurance Mandate was passed in Indiana. Usually anti-mandate, the autism mandate is the only health insurance mandate he ever supported. The supporters of the autism mandate did not view the legislation as “special treatment” for autism, but a necessary correction to the discriminatory practice of the insurance industry. Autism is the only neurological disorder that is routinely denied any coverage. There are no financial, clinical, or cost arguments to refuse coverage for autism that hold water when compared to other conditions and populations that are routinely covered.
So, what I’m asking is that you call, write, and email your Senator and your Representative in the Arkansas Legislature to urge him or her to vote for Senate bill 93. The only way this bill will pass is if the legislators hear from their constituents, and that’s you, your family, your friends, and your community. You are more powerful than you know, and I am begging you to use that power to help hundreds of autistic children in Arkansas.
Sincerely,
Dianna Varady
Mother to Bradley, age 3
