Thursday, March 29, 2012

Prevalence Rates Press Conference

These remarks come from our UAC President, Mirella Petersen. This morning, the CDC released the new national rate for Autism in the USA. It is now 1 in 88, which is higher than the old rate of 1 in 110. They also released the new rate for the state of Utah. It used to be 1 in 77, the new rate is now 1 in 47. Mirella had this to say at the press conference:

          "Good morning. My name is Mirella Petersen. I am the President of the Utah Autism Coalition. I am an aunt, a cousin and a friend to hundreds of children affected by autism. I am the mother of 3 boys, one of which was diagnosed with autism in January of 2011 at the age of 4. I am humbled today to represent parents throughout the state of Utah who have children living with autism. These parents are truly some of the finest warriors I have ever encountered. As a parent, it is devastating to hear that your child has an autism spectrum disorder. Even more devastating, is to learn that there is a serious lack of access to evidence-based treatments that have been shown to dramatically improve the symptoms of autism – especially for those treated in childhood. But there is so much hope. The message I want to share today is one of hope and urgency.

           I have had the great privilege of working with parents of children with autism from Apple Valley to Lewiston. From Tooele to Heber, and everywhere in between. They are in every county, every city and every neighborhood. We have been fighting to raise awareness and build hope for families affected by autism throughout the state of Utah. When I think of heroes, I picture a single mother in Huntsville raising a child with autism that suffers from such severe sensory issues that he has to be fed through a tube. With great effort, she brought him to multiple meetings with her local legislators to share with them the struggles she gladly endures and the help she so desperately needs. I think of the father in Paragonah, struggling with a teenaged son living with autism, taking time off of work to raise awareness about the need for qualified adult services for his son. I think of the grandparents in Sandy who spent their afternoon making valentines cards for their local representatives to show their support for their grandchildren affected by autism. I picture the family who had sold their car to pay for medical services for their child with autism, but without complaint spent a significant part of their family budget to take a bus across the Salt Lake Valley to meet with their legislators and share their story. These families, their efforts, their unwavering battle to help their children is nothing short of heroic.

          What these parents know, what they live each day is hope. They know that autism is a treatable disorder. With access to the right services, every child with autism can improve and many will live joyful, fulfilling and independent lives. While they are ragged with over-exertion and over-extended physically, emotionally and financially they continue to cling to hope and act with urgency because they know that time is of the essence. They know that their child has talents and abilities that will blow the neurotypical world away, if given the chance. Let’s do our part to give them that chance.

            As I ponder the results of this study today, I am struck with the impression that this is a cry out to all of us to take action now. This a call to action to parents to watch for the signs of autism and have their children tested at the earliest signs of concern. It is a call to action to pediatricians and health care providers to initiate screenings earlier. It is a call to action for our legislators to actively participate in creating tangible solutions for the autism community. It is a call to action for insurance carriers to cover the diagnosis and treatment of autism. This is a call to action to society to become more aware, to offer a helping hand, to reserve judgment, to show a greater outpouring of compassion, empathy and love toward those individuals affected by autism as well as their siblings and parents. My plea today is for each of us to take action now, in our own sphere of influence, for in that action there is so much hope for the many families and individuals affected by autism. Thank you."

Wednesday, March 21, 2012

Delegates Meeting Tomorrow!



Salt Lake County Residents: There is a delegate meet and greet tomorrow night at 6:30pm at Crystal Inn just above Fashion Place Mall - 818 e Winchester (6600 so). Come and make sure your delegates (and legislative candidates) know about issues facing the autism community.

Wednesday, March 14, 2012

Caucus Meetings

Dear Utah Autism Family,
 
During the 2012 legislative session we saw some bills that were supportive of our drive to extending insurance coverage to children with autism. Unfortunately, we did not see the passage of autism insurance reform this year. But WE STILL NEED INSURANCE COVERAGE, right? Let's not skip a beat; we will keep this going until we achieve equality for people affected by autism.

How? Attend your neighborhood caucus meeting. Get to know your delegates... better yet, BECOME a delegate! 
  
Showing up to our neighborhood caucuses this coming week (Tuesday for the Democrats and Thursday for the Republicans) and becoming delegates will ensure that our voices are heard long past the legislative session. Legislators listen to their delegates. By becoming delegates, we can have a powerful influence on the process.

Please go to your neighborhood caucus meeting this week to ensure our delegates are aware of and sympathetic to the plight of families affected by autism in Utah.  

The Utah Democratic Party will be holding their caucus meetings on Tuesday, March 13th at 7:00pm.

The Utah Republican Party will be holding their caucus meetings on Thursday, March 15th at 7:00pm.

Visit www.vote.utah.gov/caucus/ to find your caucus location.

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If you have questions about the neighborhood caucus meetings please check out these helpful blog posts:

http://www.thinkingovercoffee.com/2012/03/urgent-utah-most-important-thing-you.html

http://www.thinkingovercoffee.com/2012/03/still-have-questions-about-caucus.html

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FREE PRIZES!!! Gift certificates, shirts, jewelry and other swag will be given way during some FB drawings this Friday for those who can answer some basic questions from their caucus meeting this week. Attend your caucus meetings for a chance to win free stuff - as well as a chance to change the way people with disabilities and their families are treated in the state of Utah.

I look forward to hearing from all of you on Friday regarding your experiences at your local caucus meetings this week!

Thank you again for all of your efforts - it's not a matter of "if", but "when". Let's do our part to show our legislators that autism families do NOT give up. 

Sincerely,

Mirella Petersen
President, Utah Autism Coalition 
801-896-7796

Tuesday, March 6, 2012

Much Has Changed...

I sincerely apologize for the lack of posts the past few weeks. I've had a lot going on, including surgery, and I'm only now getting back to life as normal. Now, without further ado, allow me to update you on what's been going on these passed few weeks.

Update #1 - SB 138 has been amended and no longer poses a threat to HB 69 (occurred 2/14). However...

Update #2 - HB 69 has been benched and will no longer be considered for recommendation this legislative session. During an autism town hall meeting held at the Capitol on 2/15, the decision was made to withdraw HB 69 and substitute it with a new bill: HB 272.

Update #3 - HB 272, a pilot program which would cover about 700 children with autism (ages 2-6), is currently having difficulty getting passed in the House. It has now been substituted three times. The most current status regarding HB 272 can be found Here.

Update #4 - Official Statement regarding our stance on HB 272:

"Dear Utah Autism Advocate:        

THANK YOU so much for all of your hard work over the last year to pass autism insurance reform.

The current status of the Utah Autism Insurance Reform legislation endorsed by Autism Speaks, HB 69, is that the bill is being held in the House Rules Committee. We have been informed that HB 69 will not be released from this committee for the duration of the session.

As such, there are no further plans to generate calls, emails or Capitol visits in support of HB 69.

There has been an alternate solution drafted by Representative Menlove - also known as HB 272.  Autism Speaks and the Utah Autism Coalition have not taken a position on this bill. If you have opinions about this bill please share those with your legislators.

Thank you again for all of your efforts this year!"

Update #5 -The UAC is hosting an Autism Insurance Seminar: Options for Coverage in a Non-Mandated State. It will be held this Thursday, March 8th from 6pm - 8:30pm in downtown Salt Lake. For more details, click This Link Here.

Here is a wonderful post by Christine Passey and her perspective regarding HB 272. Link Found Here

And now that you've been updated, here's what you can do to help Utah get a leg up regarding autism insurance coverage. There are two caucus meetings coming up next week, one for Democrats and one for Republicans. Your mission is 1- ATTEND THE MEETINGS! and 2- BECOME A DELEGATE! Now you're probably wondering, "Become a delegate? Why? What is that exactly?"  These questions have been answered by our own Christine Passey in This Post Here.

It may seem like we have been defeated, but we cannot give up! Every year, we continue making headway. We need to keep doing everything and anything we can to bring more awareness and understanding to autism. Make sure you also keep up with us via our Facebook Page for any meetings and upcoming events you can participate in!