Thursday, December 20, 2012

Utah Dependent with a Disability Exemption Reinstated


Happy couple working on taxes

The Utah legislature has reinstated the Dependent with a Disability Exemption. This means you can claim an additional exemption on your Utah income taxes for dependents who have certain qualifying disabilities. This can help lower the amount of Utah income taxes you owe. The link below gives a full explanation, including the categories for eligibility. The main thing you should remember, however, is that you are required to complete a form TC-40D (link below) for each dependent that qualifies. The form requires that you get a signature from your school district or other agency, so don't wait till the last minute!

Website: http://incometax.utah.gov/filing/exemptions
Form TC-40D: http://tax.utah.gov/forms/current/tc-40d.pdf
Contact for Questions: http://incometax.utah.gov/contact-us/email-and-phone

Thursday, November 29, 2012

IMPORTANT! Congressional hearings on rising autism rates TODAY.




IMPORTANT!!! Today is the Congressional Hearing on rising autism rates at 2pm ET, 12pm MT. Here is how you can be involved.

1-Tell Congressman Issa Your Autism Story for DC Autism Hearings. Fill in short form found here with your story: http://www.safeminds.org/government-affairs/2012-congressional-hearing-form.php

2-Watch the hearing. There are a few ways to watch.
•C-SPAN- http://www.c-span.org/Live-Video/C-SPAN3/
•House Committee Live Streams & Archives - http://thomas.loc.gov/video/house-committee/hsgo00
•Or channel 149, 1902 & HD 777

3-Share this information so others can get involved as well!

Wednesday, November 14, 2012

ATTENTION AUTISM MEDICAID WAIVER PILOT APPLICANTS

Utah Department of Health 
Medicaid has begun notifying applicants for the Autism Medicaid Waiver Pilot Program regarding whether or not their application was selected for participation in this program. We are interested in hearing back from parents that applied for this program as to whether or not they were accepted and what their experience has been. Please reply to this post with your comments or send them in a private message to utahautismcoalition@gmail.com. Thank you!

Tuesday, November 13, 2012

November / December Advocacy Campaign - Christmas Cards from Autism Street


 
For those who live on "Autism Street" the holidays pose some unique challenges...

Let's share those stories! Send your Utah policymakers a Christmas card and share with them a short, kind, sincere and possibly even humorous message about your experiences with Christmas on "Autism Street".

In addition to your address, add AUTISM STREET below your name on the return address portion of the envelope. Let's see how many cards from Autism Street we can get send from Autism Street this year!
LIKE - SHARE - COMMENT ON FACEBOOK

[Post DONE on this event for all to see]

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Find your new post-redistricting State Senate and House District numbers by entering your address here: http://elections.utah.gov/map/district-maps.

Find your 2013 Senator and Representative addresses listed by district number here: http://www.utahautismcoalition.org/p/2013-utah-legislators.html

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For those of you that get WRITERS BLOCK when trying to write a card, here is a sample note:

Dear Senator/Representative Doe,

I am writing to you from Autism Street. I have a _______ [child, friend, student, cousin, grandchild, etc] that lives with autism. I love them very much. The unusual routine and hustle of the holidays can be very hard on a person with autism. As you celebrate this season of giving, please hold a place in your heart for those affected by this disability. Thank you for your support and understanding.

Sincerely,

Jane Constituent

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Feel free to copy at will or write your own message!

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/

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*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

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*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.)


Friday, September 28, 2012

Autism treatment slots open Monday for young Utah kids

High demand is likely, which would trigger a lottery for applicants.

First Published Sep 27 2012 02:42 pm 
 
"Starting Monday, Utah families who have young children with autism can apply for free treatment provided by a new pilot project — but if too many seek help, they’ll need luck to win a slot.

About 250 kids can be served through the Medicaid-funded portion of the project, which is open to children who are not covered by the low-income public health insurance plan. If more children apply than can be helped, which is likely, applications will be ranked at random, similar to a lottery, explained Utah Department of Health spokesman Tom Hudachko."

Read the full article here.

How to apply:

Children between the ages of 2 and 6 who meets certain requirements can apply for autism treatment through the Medicaid-funded portion of a state pilot project.
  • Applicants need not be on Medicaid. To be eligible, kids must:
  • Be clinically diagnosed with an autism spectrum disorder.
  • Be a U.S. citizen and Utah resident.
  • Have been born between April 1, 2007 and October 31, 2010.
  • Not have assets, such as a bank account or trust fund, in his or her name in excess of $2,000.
Applications will be available Monday at http://www.health.utah.gov/autismwaiver.

Wednesday, September 26, 2012

Where does your Senator / Representative stand?





Do you know where your local Senator or Representative stands on autism issues in Utah?

1 in 47 children in Utah have autism as opposed to the national average of 1 in 88. We have the highest prevalence rate in the entire US and yet Utah remains one of just 18 states that does not have laws on the books requiring insurance carriers to cover autism as any other medical condition.

Without the ability to access medically necessary treatment for autism, children in Utah are being denied important medical care - giving them a 2% chance of achieving best outcomes. Children who receive treatment have a 47% chance of achieving best outcomes and an 80-90% chance of achieving significant improvement.

Does your local Senator or Representative (or candidate for office) know this information? More importantly, do they know that YOU - a voter in their district - know this information? Do they know your sons or daughters affected by autism? Do they know your struggles? Do they know your family members, friends and neighbors that support you through your autism journey?

The Utah Autism Coalition is running legislative meetings now through November 22nd to help those affected by autism connect with public officials that can actually make positive change occur in our community. In a short one hour meeting you can make sure that you know where your elected officials stand and that they know where YOU stand. Please visit the UAC events page and see if there is a meeting arranged in your area. If there is not, please contact us at utahautismcoalition@gmail.com and we can help you get one arranged.

Tuesday, August 7, 2012

ATTN: Utah parents of 2-5 year old children with autism

Confused about TREATMENT options for your 2-5 year old child with autism in Utah?
 

Private insurance, The PEHP Pilot program, The Utah Autism Treatment Fund or The Utah Autism Medicaid Waiver?

There has been a lot of information published recently on each of these treatment options. Are you still confused on which one to choose or how to enroll your child? You are probably not alone.

We would like to know if there is a need for a seminar on this topic and, if so, what location. Please respond with whether or not you would be interested in a free workshop on this issue and what city would be most convenient for you.

If there is enough demand in multiple locations we may hold more than one workshop. If there is no demand, we will continue to rely on the published information on each treatment program... so if this is something you need please speak up!

(For those parents whose children do not fit in this age range - please know that the Utah Autism Coalition will continue to fight for effective evidence-based medical treatment for all children with autism in the state of Utah. To join this effort go to http://www.utahautismcoalition.org and click on 'Get Involved Now'.)

Monday, August 6, 2012

Medicaid Autism Waiver Pilot


Please review the following fact sheets regarding the Medicaid Autism Waiver Pilot. This is not an income-based program, so if you have a child with autism between the ages of 2-5 please contact Josip Ambrenac – Autism Waiver Liaison at jambrena@utah.gov or (801) 538-6090. You can also learn more at http://www.health.utah.gov/autismwaiver/.
 

Utah Autism Treatment Fund Update

The Utah Autism Treatment Fund program has recently finalized the rule for the Request for Grant Application process for providers that wish to participate in this program. Currently there is $910,000 available for the treatment of children with autism in Utah between the ages of 2-5. There is speculation that this fund may increase based on promised contributions from insurance providers. This funding will be awarded to qualifying providers in grant form and the published rule clarifies how applications will be evaluated and funding will be awarded.

If you are a provider interested in participating in this program or know of a provider you would like to access through this program please visit the following link: http://www.health.utah.gov/cshcn/AutismTxAcct/index.html.

The submission deadline for providers is August 21st, 2012, so please submit your proposal ASAP. If you are a parent interested in having your child access treatment through this fund please watch for updates on link above. Parents and guardians can enroll children with autism directly through providers that have received funding. You can direct questions regarding this program to rgiles@utah.gov. We will post more information as it becomes available.

Friday, August 3, 2012

Have you invited your legislator to the Utah Autism Coalition Summer Social?

Give them a call today and personally invite them to bring their family with your family to this great event! Nothing helps our legislators understand autism and the needs of our children like seeing it first hand and experiencing a portion of the joy and challenges living with a child with autism brings. 

To find your current State Representative and Senator, visit the following link: http://elections.utah.gov/map/district-maps to find your House and Senate District numbers and then use the following roster to access your legislator's contact information: http://le.utah.gov/Documents/2012roster.pdf

 

Challenge yourself TODAY to pick up the phone, give them a call and say this:


Hi Senator/Representative __________. My name is __________. I am a member of your legislative district and would like to invite you and your family to join my family and others from your district on Saturday, August 18th at Sugar House Park for the Utah Autism Coalition Summer Social between 11am and 2pm. Would you be able to attend with us that day? 

[Pause, listen to response, thank them either way].

Whether or not they are able to come is not important - summer is busy and we all do our best. The important things from this exercise are:
  1. They are invited 
  2. They are aware that members of their district are impacted by autism
If you have not yet RSVP'd or shared information about the Summer Social, the details are provided below:

 

The Utah Autism Summer Social was such a hit last year that we are going to do it again! See below for details:

WHO: Families and individuals affected by autism spectrum disorder and their legislators. This event is open to the public and everyone is welcome to attend.

WHAT: Meet your politicians and share your concerns for families and individuals affected by autism. Enjoy some fun with bounce houses, face painting, clowns, sensory activities and crafts, a balloon launch, food and much more!


WHEN: August 18th, 2012 from 11am - 2pm

WHERE: Sugar House Park: 1400 East 2100 South, SLC UT. 
Sugar Beet Pavilion – Located near the amphitheater in the southeast corner of the park.

RSVP:
Let's work TOGETHER for autism insurance NOW!

Tuesday, July 31, 2012

Never understimate a child with autism

Eric Duquette has autism. He could not speak until he was 5 years old. By the age of 18 Eric had the second highest GPA in his graduating high school class and could speak fluent Spanish and Sign Language. As he delivers his graduation speech he implores us to "never underestimate a child with autism".



Why do we want evidence-based medical treatment for autism? It's simple: because autism is a treatable disorder and we refuse to underestimate our children affected by this condition. We don't want pity, charity or special hand outs. We want to be able to purchase health insurance that covers our family's health care needs. We will do what it takes to get them the help they need because we will not underestimate what they can achieve.

Monday, July 30, 2012

NEWS ARTICLE: Utah autism solution continues to frustrate parents

First Published Jul 29 2012 05:22 pm • Last Updated Jul 29 2012 11:17 pm
Link to full article: http://www.sltrib.com/sltrib/news/54574368-78/autism-logan-pilot-treatment.html.csp

The adorable little boy wearing the backpack is 6 years old, but Logan Hilton can’t hold a conversation and doesn’t understand how to make friends. 

A website designed to raise $12,000 for two years of Applied Behavior Analysis autism treatment for him explains that without help, "Logan would require constant costly care for the rest of his life."

Utah’s two-year autism treatment pilot, which launched this year, is intended to help kids like Logan. His mom works for the Department of Corrections, and as the child of a public employee, he can now receive up to $30,000 worth of behavioral treatment each year. 

The problem is that families covered by the Public Employees Health Program still need to contribute $6,000 annually to take advantage of the maximum state benefit.

"I’m grateful for it, but at the same time it’s not enough," said his mom, Michelle Hilton. "They haven’t made it affordable enough."

The Eagle Mountain mom believes more families would have participated if the requirements — paying 20 percent of the cost, and open only to children from age 2 to 6 — had been more flexible.

Only 25 children are signed up for the 50 autism pilot slots in the PEHP portion.

"I think because of that age limit we don’t capture all of the autistic kids in our population," said Toan Lam, the PEHP medical director.

When the Legislature passed funding for the autism treatment pilot last spring, it was heralded as Utah’s solution to the community’s simmering demand for state-mandated insurance coverage for autism. The pilot provides a limited number of slots to children covered by PEHP and Medicaid. Additional state funding and private donations are expected to create openings for other children.
Supporters say any funding is better than none, because Utah does not require insurers to cover autism treatment.

But frustrations have already arisen from parents, as the program’s limitations emerge and $1 million in private donations remains elusive.

Rep. Ronda Menlove, R-Garland, who sponsored the bill to create the pilot, said the money is still in the pipeline. The problem, she said, was bureaucratic, and an Aug. 15 press conference will reveal the donations.

"The entities that are contributing are waiting for the autism treatment fund to put the rules in place," she said.

Without the money, the state would be able to fund only 30 autistic children in that portion of the pilot. The private donations would expand the benefits to several dozen more.

The Medicaid portion of the pilot is set to launch this fall and will serve slightly more than 200 children. Enrollment has not yet begun, but families can sign up for electronic updates.
"We’re anticipating that we’ll have more people apply than we have openings," said Michael Hales, the state Medicaid director.

Children will be chosen at random — not based on their level of autism — though slots will be distributed statewide. 

The children who are selected will have their progress measured over time to see whether the treatment is effective.

 For now, the family’s plan is for Logan to start attending a treatment center in Draper full-time this fall. His mom agrees that contributing $6,000 a year toward his treatment is far better than the more than $20,000 many families pay out of pocket for their children.

But if she had understood the actual cost, she might have made different choices.

"Had I known I probably wouldn’t have applied, either," Hilton said. "We just don’t have that kind of money." 



Thursday, July 19, 2012

Utah Autism Summer Social

 

The Utah Autism Summer Social was such a hit last year that we are going to do it again! See below for details:

WHO: Families and individuals affected by autism spectrum disorder and their legislators. This event is open to the public and everyone is welcome to attend.

WHAT: Meet your politicians and share your concerns for families and individuals affected by autism. Enjoy some fun with bounce houses, face painting, clowns, sensory activities and crafts, a balloon launch, food and much more!


WHEN: August 18th, 2012 from 11am - 2pm

WHERE: Sugar House Park: 1400 East 2100 South, SLC UT. 
Sugar Beet Pavilion – Located near the amphitheater in the southeast corner of the park.

RSVP:
Let's work TOGETHER for autism insurance NOW! 

Tuesday, July 17, 2012

Sahara Cares 2012 Carnival for Autism!

This such a fun event! Save the date and remember to register by September 7th at the following link:
 http://www.saharacares.net/register_here_2012.php.


Thursday, June 28, 2012

Affordable Care Act upheld. What does that mean for Utah?



Today the Supreme Court upheld the Affordable Care Act in a ruling of 5 to 4.  What does this decision mean for autism insurance coverage in Utah?

Lawmakers in Utah have indicated plans to file a certificate of exemption, which would allow Utah to define our own ‘essential benefits package’.  If we want evidence-based treatments for autism included in this ‘essential benefits package’ we must act NOW!  All it takes is 3 minutes of your time, right now. If you have already submitted your comments, please encourage your friends and family to comment as well.

Copy and paste the following letter into your email and send it to LRammell@Le.Utah.gov.  Make sure to include your own comments and personal story. Post done below so we know who to thank. Together we WILL get autism insurance coverage in Utah!





Dear Utah Health System Task Force:

I am writing to ask you to please include evidence-based treatment for autism in the essential benefits package for Utah. Currently, Utah leads the nation in autism prevalence rates with 1 in every 47 children having some form of autism spectrum disorder. With treatment, 47% of children with autism can achieve normal intellectual functioning as opposed to just 2% of children who are left untreated. With treatment, 80-90% of children receiving evidence-based treatment show significant improvement of their autism symptoms.

[Insert personal experience here, if desired.]

Including evidence based treatment for autism in the essential benefits package is relatively inexpensive - just $0.44 - $0.83 per member per month. The average cost of caring for an untreated individual with autism over their life span is as much as $3 million dollars - most of which will be incurred in the later part of their lives. Providing coverage to treat autism in the early years of a person's life can save millions of dollars and result in independent adults that are able to contribute to the society in which they live rather than rely on others for their livelihood and well-being.

Currently there are 31 states with legislation requiring coverage for the treatment of autism. Aside from the basic humanity of caring for the children in Utah affected by autism, the state of Utah has an obligation to protect tax-payers from the expense of a large population of untreated individuals with autism. As a concerned Utah resident, I urge you to include evidence-based treatment for autism including behavioral health treatment, pharmaceutical care, psychiatric care, psychological care, therapeutic care (including occupational and speech therapy) and medical care.

Sincerely,

Jane Freeman [Insert your name]
121 Freedom Way [Insert your address]
Treatment Town, UT 84123 [Insert your city, state, zip]

Wednesday, June 27, 2012

Is evidence-based treatment for autism 'essential' for you?

Don't leave it to chance whether or not Utah lawmakers know treatment for autism is essential.
Submit your comments TODAY.
(Comment period closes 7/3/12)


Utah lawmakers are in the process of putting together their list of health benefits that are deemed essential for inclusion in the Utah health insurance exchange program. They are accepting public comments - and you can bet your bottom dollar the insurance carriers have weighed in heavily on this issue but where is the voice of the consumer?

You have until July 3rd, 2012 to provide your comments in writing to the Utah Health System Task Force. Please provide your comments indicating that evidence based treatment for autism is an essential benefit for you, your family and your community.

Please send your comments to LRammell@Le.Utah.gov.

After you have sent your comments:
  • Post DONE
  • Share on FB
  • Urge your friends, family and neighbors participate

Thank you!
Below is a sample letter for you to use as a starting point. 
Be sure to modify it to your situation and insert your personal sentiments on the issue.


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


Dear Utah Health System Task Force:

I am writing to ask you to please include evidence-based treatment for autism in the essential benefits package for Utah. Currently, Utah leads the nation in autism prevalence rates with 1 in every 47 children having some form of autism spectrum disorder. With treatment, 47% of children with autism can achieve normal intellectual functioning as opposed to just 2% of children who are left untreated.  With treatment, 80-90% of children receiving evidence-based treatment show significant improvement of their autism symptoms.

[Insert personal experience here, if desired.]

Including evidence based treatment for autism in the essential benefits package is relatively inexpensive - just $0.44 - $0.83 per member per month. The average cost of caring for an untreated individual with autism over their life span is as much as $3 million dollars - most of which will be incurred in the later part of their lives. Providing coverage to treat autism in the early years of a person's life can save millions of dollars and result in independent adults that are able to contribute to the society in which they live rather than rely on others for their livelihood and well-being.

Currently there are 31 states with legislation requiring coverage for the treatment of autism. Aside from the basic humanity of caring for the children in Utah affected by autism, the state of Utah has an obligation to protect tax-payers from the expense of a large population of untreated individuals with autism. As a concerned Utah resident, I urge you to include evidence-based treatment for autism including behavioral health treatment, pharmaceutical care, psychiatric care, psychological care, therapeutic care (including occupational and speech therapy) and medical care.

Sincerely,

Jane Freeman [Insert your name]
121 Freedom Way [Insert your address]
Treatment Town, UT 84123 [Insert your city, state, zip]

What should Utah’s ‘bare minimum’ health plan cover?

By Kirsten Stewart
First Published Jun 18 2012 11:23 am • Last Updated Jun 19 2012 07:39 am


"Amid uncertainty over the fate of federal health reform, Utah is taking steps to implement parts of the law.

Topping the "to-do" list this week: defining the "essential benefits" package, or bare minimum of health benefits mandatory for all policies sold on Utah’s online health exchange — seen as the primary path to coverage in the future."

Tuesday, June 19, 2012

PEHP Pilot Program Update for Participants

PEHP sent out letters this week to program applicants for the PEHP Autism Pilot Program. If you applied and do not receive any notification of acceptance into the program this week (or other correspondence indicating you have been declined or that you will need to supply additional information) you will need to call them right away. The program is set to begin reimbursement of ABA services on July 1st, 2012.

For those accepted into the program, you should have received information regarding providers that have already been pre-screened and authorized for use in this program. If you already have a provider of choice that is not on the list you received, you will need to submit their information to PEHP for authorization for reimbursement of services through this program. If you do not have a provider selected, you can call those on the pre-screened list sent to you and negotiate a program with that provider. If you have questions don't hesitate to ask!

PEHP - Public Employees Health Program

Monday, June 18, 2012

Without insurance for autism, Utah families leave state

Without insurance for autism, Utah families leave state: 

http://www.sltrib.com/sltrib/news/54254286-78/autism-insurance-utah-state.html.csp


Something very real and tragic is happening to Utah families forcing them into some very difficult decisions. SelectHealth is behind the times in their statement that they will not willingly cover treatment for autism because it's plans "are intended to cover medical needs, rather than to modify behavior or achieve educational objectives"

Given the recent advisement from the federal advisory board on the issue, it seems that they should be adjusting their policy on autism treatment: “The OPM Benefit Review Panel recently evaluated the status of Applied Behavior Analysis (ABA) for children with autism. Previously, ABA was considered to be an educational intervention and not covered under the FEHB Program. The Panel concluded that there is now sufficient evidence to categorize ABA as medical therapy. Accordingly, plans may propose benefit packages which include ABA.”

From Brian Eliason, father of a child with autism: "It was hard enough to discover that he had autism, but then it was just an added burden to know we didn’t have a way to financially take care of him unless we left the state."

Is this how Utah legislators and residents want to treat families of children with autism? Are we a family friendly state as long as your child doesn't have special needs or medical conditions we don't want to cover? This is not how I want my state represented, how about you?