Autism Speaks | Utah Insurance Bill Heads to Senate Floor | Feb. 14, 2014 #AutisticHistory #BanABA


[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]

Utah Insurance Bill Heads to Senate Floor

February 14, 2014

SALT LAKE CITY (February 14, 2014) — The 2014 Utah autism insurance reform bill is headed to the Senate floor following passage today by the Senate Business and Labor Committee on a 6-1 vote. Utah has the highest prevalence of autism in the nation, yet is one of only 16 remaining states yet to bar insurers from refusing to cover basic therapies on the basis of an autism diagnosis.

Sponsored by Sen. Brian Shiozawa, the bill, SB.57,  would require state-regulated health plans to cover applied behavior analysis (ABA) treatment for autism up to $36,000 a year for children through age 8, then up to $18,000 a year though age 17. The bill mirrors a coverage plan Salt Lake Mayor Ben McAdams proposed for county employees in his 2014 budget proposal.

In addition, coverage would be required for speech, occupational and physical therapy, as well as pharmaceutical benefits.

Small businesses with fewer than 50 employees would be exempt from providing the coverage if they could demonstrate it raised the cost of their health plans by 2.5 percent or more. A new study in Missouri showed the impact of its autism insurance reform law during 2013 on total health care costs was 0.2 percent.

According to a 2012 Centers for Disease Control study, 1 in every 47 Utah children has autism, the highest rate in the nation and significantly higher than the 1 in 88 national average. The University of Utah calculated that between 2002-2008, autism prevalence increased twice as fast in Utah than nationally (157 percent versus 78 percent.)

The 2014 bill marks the third attempt in three years Utah legislators have taken on the issue. Jon Owen, president of the Utah Autism Coalition, relates in a blog how his son Ben’s autism diagnosis led to insurance claims getting rejected “for anything from well-child visits to a broken arm.”

Andrea Griggs of Murray reported how paying the cost of just one year of ABA therapy for her son Jaxon forced her family to sell their home and downsize to a house half the size. Her family’s insurance also refused to cover treatment because of Jaxon’s autism diagnosis.

The Cost Of No Insurance: Your Home

Andrea Griggs of Murray, Utah is the mother of four children including two sons with autism. Even though Utah has the highest prevalence of autism in the nation (1 in 47), it remains one of only 16 states yet to require health insurers to cover autism therapies. Learn what that has meant for the Griggs family:

Most people in the autism community learn very quickly that the key to unlocking a child’s potential is early, intensive, evidence-based interventions, including ABA therapy. In many areas of our country, the key to getting these treatments is through their individual health insurance plan. In fact, in 34 states across the country insurance companies are required by law to offer these benefits. I do not live in one of those states.

The key to getting treatment for my son meant losing the key to our front door!

When we started the process of getting a diagnosis for our son Jaxon, we had no idea where this road was going to take us. We started investigating the idea that our son might be affected by autism at a very young age. Unfortunately our pediatrician was not familiar enough with autism to understand our concerns and direct us to the proper professional.

(Andrea and Jeremy Griggs with [l to r]: Tomas, Jaxon, Kyara and Ender)

When Jaxon was 6 years old, we switched doctors and that doctor agreed with our concerns and encouraged us to bring him to a child psychiatrist to get the proper diagnosis. We were on a waiting list for over a year just to see a doctor who could diagnose our son.

While we were waiting for a formal evaluation, Jaxon was struggling in school and even started displaying suicidal and other violent tendencies. Based on a feeling, we took him to the neuro-psychiatric hospital and waited in the lobby until someone would see him. After a few hours  we finally got a doctor’s attention; she quickly agreed with our concerns after a quick evaluation and admitted him for 10 days.

He came home for a few months, but then regressed and ended up in the hospital again. It was during this time when he was 8 years old that we were finally able to get a diagnosis of autism (and other disorders) for our son.  

We often hear of parents who are devastated when they hear the words “your child has autism.”  We had quite the opposite reaction; we were relieved to finally have the answers we had been seeking for so long. We were relieved to finally know what we needed to do to help our son achieve his potential and become the best Jaxon that he could be!

Then we received the devastating news-we wouldn’t be able to afford the therapies and treatments that he needed because our insurance company would not pay for those services. The reason they wouldn’t pay for those treatments? He had autism. They would pay for treatments for ADHD, depression, anxiety, bipolar disorder, multiple personality disorder, dyslexia, and many other conditions, but not autism. We knew what we needed to do for our son, but we had no way to afford it.  

We were faced with tens of thousands of dollars in bills for the first year of his treatment that our insurance company wouldn’t pay a single dime to cover. We went through our entire savings, but still couldn’t afford to pay for his treatments. After much thought and prayer, we came to a very difficult decision for our family. The only way we would be able to give Jaxon the treatments and opportunities that he would need to be happy and successful was to sell our home.

This was not an easy decision for our family to make. We had built this home together from the ground up. We had moved there before our oldest started kindergarten so they would attend the same school with the same kids all through elementary school and even through high school. We had made friends and established a neighborhood family that we all loved. Change is difficult for anyone, but even more so for an individual with autism. This was a very difficult decision for our family.

So, we prepared to say goodbye to our friends and neighbors. To leave the only school my kids had ever known and our church congregation that we had come to love so much. The new house was half the square footage of our previous house and 50 years older so it took some adjustments, but at least we could better afford treatments and medications for Jaxon. It was a very difficult transition and a very emotional experience for everyone.

This is a decision no parent should ever have to make-do we pay for treatment for our child or keep our house?  

Even though we had to move, our new neighborhood and church congregation have been very supportive and helpful to our family and our son. We have definitely been blessed on this journey, but the fact remains that a lot of the challenges we faced could have been avoided if our insurance allowed for autism coverage.  

The key to giving parents the tools they need to obtain services for their children with autism is autism insurance reform. Better insurance coverage will expand services for diagnosis and treatment for autism, creating job opportunities and growth in the medical field. Autism insurance reform is the key to reducing the tax burden as these children get older. It is the key to helping these individuals become tax paying, contributing members of society. Autism insurance reform is the key to unlocking the autism puzzle in Utah and helping our 1 in 47 achieve their potential.  

The Utah Legislature failed in 2012 and 2013 to enact insurance reform bills; Senator Brian Shiozawa, a past president of the Utah Medical Association, will again sponsor this year’s bill. Help get the bill passed this year by registering with Autism Votes here.

The Autism Community Is Not The Autistic Community

* The “autism community” is not the Autistic Community. The autism community was created by non-Autistic led organizations and includes mostly parents, professionals and their friends. Most of what the world knows about autism is sourced from the non-Autistic “autism community.”

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