Wednesday, December 17, 2008

Call Your Legislator!!!

It ‘s time to get going on our grassroots push for Autism Insurance Legislation! We need to make sure that we are well organized and all working together to get this bill passed. We would like you to call or write a letter to your legislators between now and New Years. We need you to communicate to your legislators with specific, unique messages. If everyone is using exactly the same sentences in their letters and phone calls, it doesn't have the same impact. Studies have shown that when a legislator gets just 5 unique contacts on the same issue, they perceive it as a groundswell. It is very important to include every possible way a legislator can contact you. There's nothing more aggravating to a legislator than getting a letter or phone call with no phone number or mailing address or email address to reply to. We’re going to go over some talking points, but you need to make sure that your phone call is unique to you and your relation to autism. Please don’t use these points word for word.

1. Make sure your legislator knows that you are their constituent. Legislators always respond more when they know one of their voters has contacted them. This could be said in a few different ways. “I am your constituent.” “I live in your district.” “I voted for you in the recent election, now I need your help.” “I live down the street.” or “in the neighborhood down the street from you.”

2. This is where you tell them your personal story about autism. It doesn’t need to be a long explanation, but it does need to be your own. “My son/daughter has autism, I have found that the services offered for him are highly insufficient….” “There are therapies for autism that are known to help autism, but I can’t afford to pay for them all out of pocket.” “I have taken a second mortgage on my home to pay for autism therapies” “I have a friend or neighbor or relative who has a child with autism. I have seen first hand the hardships that they go through because of the lack of services for their child.” “My friend/neighbor/relative should have more options.” If you are a friend/neighbor/relative of someone who lives with autism in their home, you can ask that family what some of their personal hardships have been, and convey those to your legislator.

3. Ask them to help by supporting Clay’s Law. “I need a personal favor from you, please co-sponsor the autism insurance bill.” “Please help my family and the rest of the families in this state by co-sponsoring the autism insurance bill” “I need you to help me by supporting this bill.”

4. We don’t expect you to know every detail of this bill. So, if they want to know more specifics about the bill, tell them to contact the bill’s sponsor, Senator Howard Stephenson. Then let us know, and we can contact them with more information.

5. Thank them for their time.

It is very important that while you are speaking with your legislator, you need to be as kind and gracious as possible. We know that many of you are so frustrated and angry about the lack of care. These are not the people to take it out on. Legislators need to feel like we need them to help us. So, please use the most kind words while speaking with them.

Once you have finished with your phone call, please report back to us at about how your legislator responded. The easiest way for us to understand how well the legislators are responding is through all of you speaking with them. So please get back to us with as much detail as possible. We will not be asking anyone to email their legislators. Studies have shown that it is a highly inefficient way to gain support from legislators. So please stick to phone calls and letters.

Thank you for taking the time to contact your legislators. This bill will not get passed without the hundreds of phone calls that need to take place. We appreciate your time and support for this legislation.

If you know who your legislators are you can find their contact info at: and
The senate website hasn't updated their new legislators contact info yet. So, email me if you can't find your Senators contact info.

If you don't know who your legislators are, you can find out by visiting and entering your zip code.

Tuesday, December 16, 2008

In The News!

Below is an article that was printed in today's Salt lake Tribune. Please go to to see the full article including photos. While you are there, please leave a positive comment about this legislation. We need everyone to see how much support is behind this bill.

Bill could mandate health insurance for autism therapy
Legislation » Sen. Howard Stephenson sponsoring measure

By Heather May
The Salt Lake Tribune

Updated: 12/16/2008 06:42:48 AM MST

Leann Whiffen and her son, Clay, play on a trampoline at their Highland home last week. Whiffen wants to change Utah law to require insurance companies to cover the intense - and expensive - autism therapy that helped Clay. How a third-grader, he no longer is considered autistic.

Leeann Whiffen made a promise that when it was over -- two years of intensive therapy to free her son from the grip of autism -- she would do what she could to help other parents afford the same sort of expensive treatment.

The Highland mother says her son, Clay, is now recovered from the disorder that had muted her babbling toddler and traded his peek-a-boo play for obsessions with round shapes and tan foods. Not even his third-grade teacher would know he was once labeled autistic, she said.
But she had to take out a second mortgage on her home and put every expense she could on credit cards to free up $30,000 a year for treatment. Knowing other parents aren't so lucky, Whiffen is working to force Utah health insurance companies to cover autism therapy.
"People need to know these kids can get better," Whiffen said this week. "I can't imagine what life would have been like for him if we wouldn't have been able to do this program."

This fall, over breakfast at Mimi's Cafe, Whiffen and another mother of an autistic child, Brittany Recalde, easily persuaded Sen. Howard Stephenson, R-Draper, to sponsor the bill in the upcoming legislative session.
"It's a draconian society that would knowingly watch children grow past the window of opportunity [for treatment] without [providing] assistance," said Stephenson, who has successfully sponsored an autism treatment bill in the past.

Stephenson said "Clay's Law" is still being drafted, but would include an annual coverage cap, likely around $30,000, and a to-be-determined lifetime cap. It will also require families to contribute. To receive coverage, the children couldn't be older than 5, since research has shown the most dramatic benefits occur the earlier the treatment starts, Stephenson said.
'Dramatic gains' » Insurers would likely only be required to cover what is known as applied behavior analysis, or ABA therapy. It provides one-on-one treatment for up to 40 hours a week at home, reinforcing communication and appropriate social behavior and discouraging negative behaviors. Instructors break down skills like following directions and carrying on a conversation.

It has been criticized for not helping children form social relationships, but according to the National Institute of Mental Health, ABA is widely accepted as effective. Claims of an autism cure are controversial. But studies have shown 30 percent to 40 percent of higher-functioning autistic children who receive two years of intense ABA therapy "will be indistinguishable from normal children 10 years down the line," said William Jenson, an educational psychology professor at the University of Utah who supports the bill.

Leann Whiffen, of Highland, is behind an effort to require insurance companies to cover autism therapy like the kind she used for her son, Clay. Clay was diagnosed with autism when he was 2. After two years of expensive therapy (at a cost of $30,000 a year), Clay, now a third-grader, was considered cured.

"They probably still are autistic, but they've made such dramatic gains that you can't distinguish them from other kids," he said.
Other children show gains but still need special-education support, and some don't benefit. Jenson cautioned it is impossible to predict how children will respond.

The bill's emphasis on ABA is based on research by Jenson, who helped start the ABA-focused Carmen B. Pingree School for Children with Autism. He recently analyzed 19 studies published over the past 40 years and found ABA was the only intensive early intervention that provided significant improvement in IQ, language and self-help skills.
"If you waste time in that window from 18 months to 5 years with ineffective therapies, you are probably going to decrease this child's chances in making dramatic gains through adulthood," Jenson said.

Questioning the cost » Supporters expect opposition from proponents of non-ABA treatments. And the Utah Health Insurance Association is worried about cost and effectiveness, said Kelly Atkinson, executive director.
Self-insured companies and the federal government would be excluded, leaving smaller employers to bear the costs, which Atkinson predicted would be "substantial."
Insurers say states should subsidize the therapy as an educational intervention, but also question whether it is proven. Atkinson cites the work of a Brown University professor who notes that the primary study used to tout ABA included only 19 children. The professor also points to research showing other interventions work, even beyond age 5, and to a study showing only up to 4 percent of children will recover.
"We have to see the scientific data that demonstrates that this is a proven successful therapy for the majority of people who participate in it," Atkinson said.
Countering the cost argument, supporters of Arizona's recent similar mandate estimated the monthly price at $1.50 per insured customer. Proponents also argue treated children will need fewer state services in the future.

For Whiffen, there is no question the therapy was worth the money. Between the ages of 2 and 4, Clay spent up to 40 hours a week slowly learning how to talk, play with toys, sit in a chair. A video she shows is striking: In one of his first sessions, Clay lets out a sustained, guttural scream as an instructor tries to get him to place blocks in a bucket. Two years later, he sits calmly at a table, laughing and talking with his instructor about forming a triangle with the markers.
Whiffen, who had wondered if her son would ever know who she was, started noticing a difference earlier.
"He looked me in the eye, called me mom and held out his cup," she said. "It was like seeing him being reborn."