Wednesday, April 16, 2014

A Message from Representative Jim Matheson

Dear Friend,
Recently, the Centers for Disease Control and Prevention (CDC) issued a new report, once again, placing Utah’s Autism rate above the national average. The report identifies one in 54 Utah children with autism, whereas the national average is one in 68. Nationally,boys are five times more likely to be identified with autism than girls.
Early detection of autism can be crucial for intervention and treatment, as early treatment can dramatically improve outcomes. Some early signs of potential autism that parents may want to look for include:
• No big smiles or other warm, joyful expressions by six months or thereafter
• No back-and-forth sharing of sounds, smiles or other facial expressions by nine months
• No babbling by 12 months
• No back-and-forth gestures such as pointing, showing, reaching or waving by 12 months
• No words by 16 months
• No meaningful, two-word phrases (not including imitating or repeating) by 24 months
• Any loss of speech, babbling or social skills at any age

As your representative in Congress, and a member of the Autism Caucus in the House of Representatives, I recognize the need to support programs for research and treatment of autism, as well as the importance of improving training and support for individuals with autism and their caregivers. In addition, I support responsible and reasonable federal funding for medical research which has long proven the key to breakthroughs in treatment and effective care. That is why I cosponsored and supported the passage of the Combating Autism Reauthorization Act of 2011. This bill, which was signed into law in 2011, coordinates and intensifies federal research on autism, promotes early detection and awareness, and provides responsible funding for autism research.
However, research into future breakthroughs is only part of the solution. Approximately 1 percent of the U.S. is thought to have an autism spectrum disorder. Caring for a child with autism can be expensive, and these costs do not simply end when the child becomes an adult – far from it. Many of these children will be, or are, becoming adults. These Americans typically have a higher unemployment rate than others across the country, despite wanting to work. This can only further exacerbate the cost issues associated with autism.
In order to help alleviate some of these difficulties, I am a proud cosponsor of The Achieving a Better Life Experience (ABLE) Act of 2013 (H.R.647). This bill allows the creation of tax-exempt ABLE accounts. Similar to a college savings account, ABLE accounts would work to assist individuals to save money to pay for some of life’s expenses including education, transportation, housing, and assistive technology. Allowing for tax advantaged savings accounts can not only reduce difficulties on individuals, but also on family members and caregivers, as they would not count against an individual’s eligibility for disability benefits. Under current law, individuals can lose these benefits if their savings accounts exceed $2,000, which can be a major disincentive for seeking gainful employment or responsibly saving money for the future. This bill would eliminate that disincentive and hopefully better allow for individuals with autism to live their lives as they see fit.
While I recognize that legislative efforts are only a beginning to addressing the challenges that autism poses for individuals, families, and caregivers, I am hopeful that we can take a valuable step forward in improving the diagnosis and treatment of autism.


U.S. Representative
4th District of Utah

Saturday, April 5, 2014

Utah's Autism Insurance Bill Signed into Law

Photo courtesy of Heather Zahn Gardner

On Thursday, April 3rd, Governor Gary Herbert signed SB57 into law, making Utah the 35th state in the country to enact autism insurance reform.

The law requires many state-regulated health plans to cover behavioral health treatments through age 9, speech, occupational and physical therapy, and psychological/psychiatric care.  It will apply to insurance plans beginning January 1, 2016.

The Utah Autism Coalition thanks Senator Brian Shiozawa for championing this cause with intelligence and determination.  It's been a six year effort to reach this point, and we thank all of the advocates who have made it happen, especially past UAC presidents Leeann Whiffen and Mirella Petersen.  Autism Speaks has been an invaluable resource to us.

At the same ceremony, Governor Herbert signed HB88 into law, turning the state's autism treatment pilot into an on-going program.  The UAC thanks Representative Ronda Menlove for all her efforts on the behalf of the autism community over her career.  Her voice will be missed in the legislature.

We thank Governor Herbert for his stalwart support of the autism community and the Utah legislature for listening to our stories and acting on them.

Wednesday, March 19, 2014

UAC VP moving on

From our former Vice President, Christine Passey:

"It is with sadness that I announce I am stepping down from my position as the Vice President of the Utah Autism Coalition.  Working alongside so many amazing and dedicated advocates, fighting for the future of children with autism, has been one of the most rewarding experiences of my life.

I am stepping down in order to put my full energy into running for the Utah State House of Representatives for District 44.  Being part of the UAC, and going through the roller coaster of working on one of the most difficult pieces of legislation in Utah, inspired me to run for office.  I know what it is like to be told “that issue is too big to tackle” and ignore it and tackle it anyway.  Our State faces many challenges that need to be addressed head on and I am dedicated to being an advocate and making a difference.

Thank you for your support."

We are sad to see Christine go but wish her the best as she runs for office.  

Autism insurance reform won't be complete in Utah until all medical necessity is covered by health insurance.  Given the current state of things, we'll need to focus on other issues for the near future.  We have many ideas about what those issues should be, but if you have suggestions, please send e-mail to with the subject line "UAC 2014+".

Monday, March 3, 2014

A Chance to Dream Big

This video was created by Utah families affected by autism as a message to their state legislature.

Thank you, Utah Senate.  Please listen, Utah House, and pass SB57.

Friday, February 28, 2014

Autism Insurance Reform Clears the Utah Senate

Thanks, Utah Senate!
The Utah Senate has approved SB.57, the furthest an autism insurance reform bill has progressed in the state Legislature since efforts began in 2009. Utah has the highest prevalence of autism in the nation at 1 in 47, yet is one of of only 16 states not to require private insurers to cover medically necessary treatments.

The vote was 18-7.

You can read more about it from Autism Votes.  While you're there, register with them if you'd like to help.

Thanks, Utah Senate!