SB 43 - Clay's Law

Awhile ago I read about Clay and his fantastic mother Leeann Whiffen in an article in the Salt Lake Tribune. We began exchanging emails, and I asked her to send me information on the bill named after her son, Clay. Please read:

UTAH LEGISLATORS INITIATE PLAN TO HELP CHILDREN WITH AUTISM

Community Leaders, Doctors and Parents Join to Provide Medical Relief for Children

SALT LAKE CITY (January 22, 2009) – Utah legislators from both the House and Senate joined Utah families and medical organizations to initiate a plan that will provide cost-savings to Utah taxpayers and individual families for the treatment of children with autism. Senate Bill 43 – Clay’s Law will provide insurance coverage for evidence-based, medically necessary treatments that are proven to significantly improve the quality of life for children with autism.

The bill is sponsored by Sen. Howard Stephenson (R), District #11, and Rep. Roger Barrus (R), District #18, and has already been endorsed by Autism Speaks, the largest autism organization in the world, and medical organizations such as the Intermountain Pediatrics Society. In Utah, 1 in 133 children has autism. In the absence of insurance coverage, families are risking bankruptcy in an attempt to pay for medically necessary treatments that can cost upwards of $50,000 per year. The savings to Utah taxpayers for each child with autism who is successfully treated is $1.8 to $2.7 million.

“We put our granddaughter, who was diagnosed with autism, into intensive therapy for about 25 hours per week. Fortunately, in our financial circumstance, we could afford it. But most families cannot afford the treatment, and it’s time for us to change that here in Utah,” said Fraser Bullock, former CEO of the 2002 Olympic Winter Games, and current Managing Director of Sorenson Capital. “I think the general impression of society is that there is no hope for these children to change or improve. But autism is treatable.”

Senate Bill 43 – Clay’s Law is named after 8-year old Clay Whiffen who was diagnosed with autism at the age of two. He received Applied Behavior Analysis (ABA) as his core treatment – a research-based treatment program that is proven to significantly improve the lives of children with autism. After 2 ½ years, treatment was faded out completely and his diagnosis was removed. Clay now succeeds in a regular public school class on his own accord, and is "indistinguishable from his peers”.

Early intensive behavior therapy (EIBT) covered by this bill is medically necessary, research-based treatments that are prescribed by a qualified doctor. EIBT has a track record for achieving the best outcomes, both in human costs and in long-term economic benefits to society. The American Academy of Pediatrics, the US Surgeon General, and the National Academy of Sciences recommend a minimum of 25 hours per week of behavioral therapy for children with autism.

"This groundbreaking legislation is a major step forward in helping parents and children with autism receive the services they need. We know that early intervention is the key to their success,” commented Rep. Ronda Rudd Menlove (R), Utah House of Representatives, District #1. “The number of Utah children with autism is increasing, and the need is growing. It is important that the Legislature act now to address this important need. Imagine being one of these parents--knowing what will help your child, but not being able to access the resources and being denied by your insurance company."

Nationwide, few private insurance companies or other employee benefit plans cover early, intense behavior therapy. Most insurance companies designate autism as a diagnostic exclusion, meaning that any services rendered explicitly for the treatment of autism are not covered by the plan, even if those services would be covered if used to treat a different condition. Some courts have ruled that insurance exclusion of autism treatments constitutes discrimination and 8 states have already enacted legislation to update their health insurance policies. Additionally, 28 other states are currently in the process of introducing autism insurance legislation.
“With the passage of Clay’s Law, Utah would join these other states across the country that have recognized the tremendous cost savings to taxpayers by providing insurance coverage for children with autism,” said Brittany Recalde, Utah Autism Coalition.

About Autism: Autism is a complex neurobiological disorder that inhibits a person's ability to communicate and develop social relationships and is often accompanied by behavioral challenges. Autism spectrum disorders are diagnosed in 1 in 150 children in the United States, affecting four times as many boys as girls. The Centers for Disease Control and Prevention have called autism a national public health crisis.