Tuesday, October 23, 2012

Oct Advocacy Campaign: A Day in the Life of Autism


For the month of October we will be collecting stories from families affected by autism to share with our Senators and Representatives. This should be a brief story, statement or collection of pictures that illustrates a day in the life of someone with autism or of someone who cares for someone with autism.

Below is an example of "A Day in the Life."  It is a fictional example but contains elements that may be applicable to your family. (Plus if you follow the show Parenthood you might love it.) Please take a moment and create a document representing your “Day in the Life of Autism” to send to your Senator and Representative.

You can send your completed documents as attachments to utahautismcoalition@gmail.com with your physical address in the body of the email and we will make sure your document is sent to your public official this month. It will also be added to a collection of documents we may use at the Utah State Capitol Building during the legislative session. If you would like your document to be kept more private between you and your legislators, please indicate so when you send it in.

Thank you so much for taking the time to participate in this effort.



Dear Senator Needsaname,

My name is Kristina and I am a voter in your district. I want to share with you about my son Max and a day in our life with him. Max is 9 years old and has autism, which causes him a great deal of discomfort when experiencing loud noises, bright lights or strange textures. We know we have to keep his routine fairly constant or we have trouble. Last week he hit his cousin during lunch for not sitting with him. Last year we had to place him in a special school for children with autism after he smashed the classroom fish tank because the buzzing of the filter was irritating him immensely. Our doors have 3 locks on them and an alarm system to prevent Max from wandering. One day he was actually picked up by police after taking a bus across town alone. We worry constantly for his safety.

Max participates in a treatment program for autism that is extremely helpful in managing his symptoms. He has improved his language skills immensely and continues to amaze us with his ability to learn socially appropriate behaviors and improve his frustration tolerance. This has come at great sacrifice for our family as our insurance plan excludes all diagnostic testing and treatment for autism. Just to get him diagnosed, we had to pay $1,200 out of pocket. My husband recently because self-employed and accessing a health plan that covers autism treatment is a significant challenge. His treatment bills became so immense that we often wondered how to pay for our home or how we will send our other children to college. We continue to fight for ways to get him the treatment he desperately needs because we know that through treatment he can overcome many of the obstacles of autism and achieve great things.

Sometimes it hurts that we don’t get to do things that typical families do, but we wouldn’t trade our Max for the world. Though Max can be a handful, he is often the bright spot in our day. He knows every family member’s favorite food, color and activity. He notices so many details that I would probably miss in life without him around. He has a wonderful sense of humor and keeps us laughing. He loves his siblings and parents very much though sometimes he is challenged in showing this love. Max is extremely intelligent and generally does well at school academically, though we have regular struggles with social problems. He has made amazing progress, however, and against all odds was just elected class president. When he puts his mind to something he gets it done. He is honest, loving and has so much to offer in this world. I am sharing this story with you to help you get to know us, as members of your district, so that you can better understand the needs of our family and our wonderful son Max.

Sincerely,

Your Name Here


Autism Views from David Swan - Candidate for Utah of Representatives District 21


David Swan is running for Utah House of Representatives District 21 and has made the statement provided below regarding autism in Utah. 

 

"How we treat those with challenges says a lot about what kind of society we live in. As a parent of a child with autism, I know first-hand the challenges that face families and the costs that they can incur. The pilot program passed by the legislature last year must be the start of addressing this issue, not the finish. Autism rates have steadily increased and Utah’s rate is the highest in the country. Something must be done to address the needs of those with autism now. I will advocate for those with autism and other special needs. Parents need the support of their community and I want to ensure they get that support."

For more information visit: http://www.facebook.com/DavidSwanForHouseDistrict21/posts/331709983594093 or Swansmarketplace.wordpress.com

*Disclaimer: Please note that while the UAC does not endorse any political party or candidate, we invite ALL candidates and public officials to publicly share their position autism issues so our members can be well informed on election day.

Friday, October 19, 2012

Katy Perry, Jodi DiPiazza Sing at Night of Too Many Stars

As this young girl's dad said he has done, let's take the limits off of what we think our young people with autism can achieve.

Wednesday, October 17, 2012

Autism Views from Todd Weiler - Candidate for Re-election in Utah State Senate District 23


Todd Weiler is running for re-election to Utah State Senate District 23 and has made the statement provided below regarding autism in Utah. 

 

"I am very concerned that we are not meeting the needs of children with autism and their families. I'm convinced that the state could save a lot of money by ensuring that these children get the assistance they require before that short window of opportunity closes. The current system, which encourages families to either quit jobs to qualify for Medicaid or file for bankruptcy, is simply not serving the public interest. I am committed to finding a better solution."

For more information visit: http://www.facebook.com/tweiler4statesenate/posts/294778557293734


*Disclaimer: Please note that while the UAC does not endorse any political party or candidate, we invite ALL candidates and public officials to publicly share their position autism issues so our members can be well informed on election day.

Autism Views from Breck England - Candidate for Utah State Senate District 23


Breck England is running for Utah State Senate District 23 and has made the statement provided below regarding autism in Utah. 

 

"One day, my then-2-year-old grandson stopped talking. He had been a happy, babbling, outgoing toddler, but within a week, everything changed. Abruptly, he stopped playing with his friends. He refused eye contact, lined up his toys over and over again, and began squealing and throwing tantrums repetitiously. The diagnosis was swift and shattering: We had an autistic child.

At that time, my grandson lived in Iowa — thank heaven. The state of Iowa acted immediately. An expert teacher and a therapist spent hours with him every week. Preschool helped him model how to learn, how to interact with others, even how to eat and play. My daughter, his mother, received her own training in how to help him, along with respite care — well-deserved breaks from the intense effort of teaching him. State-mandated health insurance covered the costs. Gradually, my grandson improved.

Recently, the family moved to Utah. My daughter is shocked at the lack of services here for autistic children. Virtually nothing is available. No health insurer will cover autistic services. Fortunately, in Iowa the little boy had improved to the point that he is now in first grade at a mainstream school and doing well.

I'm grateful to the enlightened state of Iowa for the intensive early intervention in my grandson's life. That state moved quickly to help young parents who were baffled and devastated. It probably cost the insurer tens of thousands of dollars to give that little boy the help he needed, but the dividends will be enormous. A Harvard School of Public Health study estimates the lifelong cost of caring for a dependent autistic person at $3.2 million, most of which falls on taxpayers while insurance companies bank their premiums.

By contrast, I'm appalled at the unenlightened state of Utah. Few services are available from terribly overstretched therapists. Utah is one of the few states that does not require health insurers to cover autism; yet, according to the Deseret News, Utah leads the nation in autism rates at 1 child in 47 ("1 in 47 Utah children has autism, new estimates say," March 29). Parents of autistic children clamor for help, but the Utah Legislature is too busy sending messages to Washington to listen.
A recent attempt was made to get a bill through the Legislature to require health insurers to cover autism, as do 37 other states including Iowa. The National Institutes of Health estimate that coverage would increase premiums by about 1 percent — a few dollars a year. Yet, our penny-wise, pound-foolish Legislature turned thumbs down on the bill, voting instead for a "pilot program" that will serve about 350 of the estimated 15,000 children in Utah who need help.

I submit we don't need a "pilot program" to demonstrate that an investment in early intervention will save money and, more importantly, save these suffering children from a lifetime of dependency. We need to stop hearing "no" from the health insurance companies. I was puzzled that my own state senator, Todd Weiler, led the effort to block the insurance requirement for autism.

No one knows what causes autism, but we do know that early intervention works. Where are the leaders who will move to help thousands of young Utah children like my grandson? Not in this Legislature."

For more information visit: http://www.deseretnews.com/article/765568214/Provide-more-services-for-autistic-kids.html or http://www.facebook.com/BreckEngland4UtahSenate.

*Disclaimer: Please note that while the UAC does not endorse any political party or candidate, we invite ALL candidates and public officials to publicly share their position autism issues so our members can be well informed on election day.

Tuesday, October 16, 2012

Autism Views from Gary Herbert - Candidate for Re-election as Utah State Governor


Gary Herbert is running for Re-election as Utah State Governor and has made the statement provided below regarding autism in Utah.



"Governor Herbert is committed to helping families facing the difficult challenges associated with raising children with autism. Working with Legislature, the Governor is developing a program to provide individual support for children with Autism Spectrum Disorders. We must continue to work to find the best way to help Utahns affected by autism."

For more information visit: http://garyherbert.com/

*Disclaimer: Please note that while the UAC does not endorse any political party or candidate, we invite ALL candidates and public officials to publicly share their position autism issues so our members can be well informed on election day.

Autism Views from Brian Shiozawa - Candidate for Utah State Senate District 8


Brian Shiozawa is running for Utah State Senate District 8 and has made the statement provided below on his webpage regarding autism in Utah. 


"Autism is a real neuro behavioural disease. It does have many different presentations and degrees of severity. Some patients can be relatively high functioning, but as this article illustrates, many patients and their loved ones can be devastated for both the short and long term due to the many problems which are so destructive. Further, this disease is widespread with the studies showing up to 1 in 47 children afflicted. It may be even more prevalent. Families suffer in so many ways: financially, emotionally and physically. Unfortunately, due to the many presentations and due lack of primary training in this area, many physicians do not diagnose this condition early nor know the best ways to treat. Research is on going and treatments are evolving that promise to be more effective. 

Clearly, early intervention can be very beneficial. But treatments can be and are expensive--as are too many areas of medical care nowadays--and often not covered by traditional third party insurance, so patients and their families are left to cope with the costs and go without or experience crippling healthcare related costs. I support increased research in the area of autism by our medical centers. We need to know more about causes and develop evidence based treatments. I encourage inquiry by our legislature into fairer and more effective ways to fund treatment of autism. Our current legislation in Utah is incomplete and we need together to meet as patients, families, insurers and medical providers to resolve this problem of recognition and under treatment of this condition." 

 Brian Shiozawa MD FACEP

These comments were made in response to an article in the Salt Lake Tribune titled: Desperate parents surrender autistic children to state custody

For more information visit: http://voteshiozawa.blogspot.com/2012/09/response-to-desperate-parents-surrender.html

*Disclaimer: Please note that while the UAC does not endorse any political party or candidate, we invite ALL candidates and public officials to publicly share their position autism issues so our members can be well informed on election day.

Autism Views from Ben McAdams - Candidate for Salt Lake County Mayor


Ben McAdams is running for Salt Lake County Mayor and has made the statement provided below on his FaceBook page regarding autism in Utah.


"This study further justifies my commitment mad when I was first elected to fight for children with autism. I have honored that commitment without hesitation in the legislature. I will continue this fight as County Mayor, lead by example, and expand health care coverage to include autism spectrum disorders. Share if you agree.


Utah has nation's highest autism rate, CDC report says - http://www.sltrib.com/sltrib/news/53816934-78/autism-utah-rate-data.html.csp"

For more information visit http://www.facebook.com/benmcadams/posts/281285501946737 or http://benmcadams.com/

*Disclaimer: Please note that while the UAC does not endorse any political party or candidate, we invite ALL candidates and public officials to publicly share their position autism issues so our members can be well informed on election day.

Autism Views from Peter Cooke - Candidate for Utah Governor


Peter Cooke is running for Utah Governor and has made the statement provided below on his webpage regarding autism in Utah.


"A few days ago, I met with Mirella Peterson of the Utah Autism Coalition. She opened my eyes to some very serious problems facing Utah. Even though Utah has the highest national rate of autism (1 in 47), we lag behind other states in treating people affected by this condition. Part of the problem stems from Utah not requiring health insurance providers to cover its treatment. I see this as a real opportunity to improve the lives of Utahns while decreasing government spending. Read why at the Utah Autism Coalition’s Autism Insurance FAQ, available here."


For more information visit http://www.cookeforgovernor.com/news/utah-autism-coalition/

----------------------------------------------------------------------------------------------------------------------

*Disclaimer: Please note that while the UAC does not endorse any political party or candidate, we invite ALL candidates and public officials to publicly share their position autism issues so our members can be well informed on election day.

Autism Views from Heidi Bitton - Candidate for Utah House of Representatives District 29


Heidi Bitton is running for Utah House of Representatives District 29 and has made the statement provided below on her webpage regarding autism in Utah.


Autism insurance reform

"The diagnosis rate for children with an Autism Spectrum Disorder (ASD) in the United States, is 1 in 88 children.

In Utah, that number is 1 in 47.

As of right now 31 states have passed comprehensive Autism Insurance coverage with no age cap. Utah is NOT one of them.

Autism is at times, a very lonely diagnosis. Each family struggles with thier own set of difficulties, and most have no insurance to help with the therapies needed. It is said that once you have met ONE person with Autism, you have met ONE person with Autism. Each individual is unique and exclusive in their set of abilities and talents.

As I see it, our Utah values have instilled that it is our obligation to provide satisfactory care and safety for our families and communities. Autism does not go away. It can however, improve with therapies, including behavioral, speech and social.

Now is the time to help. Now is the time for Utah to pass comprehensive Autism Insurance coverage for ALL ASD’s with NO AGE CAP!

For more information on what you can do to aid families struggling with ASD, or if you are a family looking for resources in your community, please visit the websites below."

AutismSpeaks.org

http://faastutah.weebly.com/

http://paasparentsupport.blogspot.com/20…

UtahParentCenter.org

For more information visit http://heidibitton2012.com/?page_id=53

---------------------------------------------------------------------------------------------------------------------- 

*Disclaimer: Please note that while the UAC does not endorse any political party or candidate, we invite ALL candidates and public officials to publicly share their position autism issues so our members can be well informed on election day.

Monday, October 15, 2012

ATTENTION POLITICAL CANDIDATES AND PUBLIC OFFICIALS

  

The Utah Autism Coalition is a non-partisan political organization aimed at getting public policies in place to help families and individuals affected by autism. We have extended the offer to ANY candidate or public official to post their thoughts and views on autism issues in Utah and we would be happy to share their statements. If you are interested in having your views shared through the Utah Autism Coalition, please send a message to utahautismcoaltion@gmail.com or give us a call (801) 896-7796.

Thursday, October 11, 2012

Take 12 Seconds on 10/11/12 to get our 1 in 88 in the Debate

PLEASE TAKE ACTION NOW. THEN SHARE EVERYWHERE!!!

 
We need your help to make the autism community, and all of our issues, a squeaky wheel in this election season. For the next debate, we don't want just a mention of autism.

We want the candidates to discuss a plan for leadership on increased funding for dedicated autism research and appropriate health insurance coverage for all Americans with autism.

 
Here is How YOU Can Help:

1) SEND AN EMAIL.  Each issue receives a tally by each of the campaigns. 

EMAIL:
You can send an email to the Obama Campaign here and to the Romney Campaign here by filling out their web-forms.

Short and sweet messages are fine or you can personalize them with a paragraph or two as to why this is important to you.
Example Email to cut & paste into web-form:

Our 1 in 88 can't wait!  Please put autism issues in the next debate and tell us how YOU will provide leadership and a plan for our community and address autism as the urgent public health crisis it has become.

2) USE SOCIAL MEDIA TO BREAK THROUGH TO THE CANDIDATES' CAMPAIGNS DIRECTLY!TWITTER:If you don't have a Twitter account, create one at www.twitter.com.TWEET this:
"Hey @MittRomney @BarackObama Our #1in88 with #autism can't wait. Put our issues in the next debate. #AutismVotes2012 www.autismvotes.org PLS RT"

FACEBOOK:
You can visit the Obama Campaign Facebook page here and the Romney Campaign Facebook page here.You cannot post directly to their pages so please post this wherever you can on their Facebook page, even under a seemingly unrelated topic. The goal is for them to see thousands of posts from our community:(President Obama/Governor Romney) - Our 1 in 88 can't wait for leadership and a plan surrounding all the issues the autism community faces today.  Please discuss autism in the next debate and let us know what you will do to help people living with autism today.

3) ASK YOUR FRIENDS & FAMILY TO HELP. Has anyone ever said, "Gosh, I wish there was something we could do to help you?" Ask them to take 12 seconds to let the candidates know autism is important to them. Get 5 friends/family members involved today.

We understand that there are other issues facing our country such as jobs, the economy, national security & the environment, but there is no reason that autism, which affects a minimum of 1 in 88 people across the United States, should not be a topic of national discussion.

Sunday, October 7, 2012

Information for Autism Treatment Account

We are pleased to provide information about enrollment for the Autism Treatment Account. Please see the flyer for all the details. Enrollment is open from Oct. 6 - Oct. 19. (Click the picture for a larger image.)