Friday, April 27, 2012

Important Update Regarding PEHP Pilot Program

The Utah State employee's PEHP portion of the autism pilot program that recently passed the Utah State Legislature is currently open for enrollment for state employees eligible for PEHP health insurance plans. There have been several important clarifications provided recently regarding this plan:

  1. There is a one time enrollment opportunity that coincides with the standard open enrollment period for state employees. This window closes on July 1, 2012 and will not reopen to admit new participants during the duration of the program.
  1. The age range is from 2 to 6, inclusive of the endpoints. So any child with an autism spectrum disorder diagnosis that is 2 but not yet 7 by July 1st, 2012 is eligible for this program. *Note: This is an expanded interpretation/clarification of the bill. If your child is already 6 and does not turn 7 before July 1st, then they meet the age criteria for participation.
  1. Children will not be cut-off from the program if they exceed the age limit during the duration of the two year pilot period. As long as they are admitted into the program during open enrollment, they will remain eligible throughout the life of the program. *Note: This is a clarification on the program. If your child turns 7 during the life of the program, they will continue to receive services throughout the 2 year period.
  1. All state employees that are eligible for open enrollment and meet age and diagnostic requirement have equal eligibility for admittance into the autism pilot program. *Note: This is a clarification of the legislation. If you are not currently eligible for PEHP insurance as a state employee but will be eligible (either through new employment or increasing hours at an existing state employment position) sometime before July 1st you will still be able to apply. It is on a first-come first-serve basis, but the program is not full at this point.
  1. The pilot program caps at 50 children.

As mentioned previously, these clarifications apply only to state employees on PEHP insurance. This information has been provided as a courtesy to UAC members and is subject to change without notice. This information does not serve as any legal advice or recommendation. Check with PEHP for final interpretation on all aspects of the plan including eligibility, enrollment and services. 

Wednesday, April 25, 2012

Style Night Out - Autism Speaks Walk Benefit Event

Mark Your Calendars!  The Utah Autism Coalition walk team is proud to announce our first event next Thursday, May 3rd is "Style Night Out" at Cotton Blossom Boutique, featuring Stylist Jen Clyde (as seen on ABC4 Good Things Utah).  A suggested donation of $10 gets you in and you'll see the latest in trends, get inspiration for your wardrobe and enjoy a great girls night out! There will be a raffle for gift certificates to great local businesses, special Autism awareness jewelry, refreshments and cupcakes from So Cupcake.  Best of all, your donations and a portion of ALL SALES that night will go to Autism Speaks through the Utah Autism Coalition walk team

Cotton Blossom Boutique is located at 
2280 E Murray Holladay Rd. in Holladay.  
It's going to be lots of fun!  

Tuesday, April 24, 2012

Autism Advocacy - It Takes A Village

I am excited to comment on a phenomenon that I have seen increase over the past year. It has long been recognized that "autism moms" are fierce advocates. Over the past year I have seen something that builds so much hope I can't contain it. I have seen a village of advocates emerge. Fathers, siblings, grandparents, neighbors, friends and even perfect strangers to the effects of autism. I invite you to read the stories of some of our advocates and join this village. If you have discovered the joy of autism advocacy, I encourage you to invite others.

During the past year I have seen fathers of children with autism step up to the advocacy challenge in droves to meet with their legislators and even run as delegates. One example is James Vaughan, a father who started his own support group called Families of Autism and Asperger's Standing Together (F.A.A.S.T - Website and FB Page). Check out his work - it is incredible. Even more so, he is a joyful person to meet and I bet (if he would even admit to that accusation) that he would say part of his joyful attitude and countenance has to do with his advocacy and awareness efforts he and his wife so tirelessly devote themselves to doing.

Adding to the effort are siblings of individuals with autism. I recently purchased an adorable book written by a six-year-old girl called, "My Autistic Brothers" (Website and FB Page). Her book tells a story of autism in a way that can only be done through the innocence of a child but contains a maturity and wisdom that is beyond her years. Her story told from such a tender age reminds me that if she can do what she does every day, I can surely do my part in raising awareness and promoting good public policy that will improve her life and the lives of her brothers whom she clearly adores.

Magnifying this work are the grandparents that show up. I know dozens but to be brief I will share two. Russ Smith (FB Page) has created a community called "Grandpa's Fighting Autism" (Website) where he describes the "moment of truth" when he came to the realization that this was not just the fight of his grandchild's parents, but that this was his fight also. Another grandparent whom I have great admiration and respect for is Tammy Hall Brown (FB Page). In addition to her phenomenal support of her daughter and grand-kids and her meetings with legislators, this grandmamma just made near 200 phone calls to her neighbors in South Jordan helping them understand autism issues and engaging them in this fight. If you live in South Jordan you just may have talked to this compassionate woman on the phone. These grandparents are doing so much more than "being aware" - they are participating where the rubber meets the road and doing things that will make a lasting difference for generations to come. If these grandparents can add advocacy to their retirement plans, I think I can spare some leisure time to rock this world with my advocacy efforts too.

Now for the neighbors, friends and perfect strangers. I wish I had a better way to honor these unsung heroes. There was the hairdresser of mine from Great Clips who heard schpeal about autism and volunteered to come do blue spikers gel and blue hair extensions for free at an autism awareness event. There were the cousins of mine who have showed up to multiple events to help me out. There are the neighbors and friends I see showing up to the Autism Speaks Walk Planning Committees to offer support in that capacity. And then there are those honest and true strangers who have not experienced autism directly, and yet they donate, call politicians, participate in events and offer support in a myriad of ways. If you fall in that category, you are amazing. You are a symbol of awareness and compassion to the world. Keep it up; know that because of your example we will create a world where individuals with autism are brought up in an environment conducive to allowing the rest of the world experience their magnificence.

My challenge to the reader - invite someone new to this community today. Invite them to LIKE the Utah Autism Coalition (FB Page - Website). Invite them to join a team for the Utah Walk Now for Autism Speaks event. Invite them to write their legislators expressing concern for their neighbors with autism and urging them to consider tangible solutions. Invite them to care.

Thank you,

Mirella Petersen 

Thursday, April 19, 2012

Upcoming Autism Medicaid Waiver Meeting

There is an upcoming meeting to discuss the new Medicaid Autism Waiver.

What will be discussed?
The development of the Medicaid Autism Services for Children Waiver. Medicaid staff will review frequently asked questions such as "Who is eligible?" "How will open enrollment work?" and "When will open enrollment happen?"

Who should attend?
Parents, families and other interested stakeholders.

Where is the meeting?
Multi-Agency State Office Building, 195 North 1950 West, SLC 84116. You may park in the north and south parking lot if the visitor front parking lot is full.

When is the meeting?
Thursday, April 26, 2012, 1pm to 3pm, DHS Admin Rooms 1020A, B and C (First Floor)

Is there a number to call if I have questions about the meeting?

Please consider making time to attend this very important meeting. Hope to see you there!

Wednesday, April 18, 2012

Join UAC in the Walk for Autism!

We are very excited to once again be joining the Utah Walk Now for Autism Speaks event! While there is no definitive date set for the walk, we know it will be sometime in September/October. With the walk just five months away, now is the time to begin inviting people to join the team and begin fundraising. This year, we're shooting for 50 walkers with a fundraising goal of $2,000.

Now more than ever, awareness and advocacy are needed for those with ASD. Research and resources are vital and joining this event is one of the best ways we can help! Come join us, invite your family and friends, start fundraising, and together we can help make a difference for those with autism!

Facts to keep in mind:

  • There are over 67 million people diagnosed with an autism spectrum disorder worldwide.
  • 1 in 88 children are born with an autism spectrum disorder in the US.
  • 1 in 47 children are born with autism in Utah, which is nearly 1,200 children a year.
  • Only 68% of children in Utah with autism actually receive a diagnosis by age 8.
  • Every 11 minutes, another child is born with autism nationwide.

Big changes start with small steps, and those small steps start with you!

Sunday, April 15, 2012

Alert: Important Meeting on Tuesday!

There is a public meeting scheduled for the Autism Treatment Advisory Committee this Tuesday, April 17, at 1pm to 3pm at the Children with Special Health Care Needs building, Conference Room A. The address is 44 North Mario Capecchi Drive, SLC, 84114.

This meeting is the place to find out about the plans, requirements, regulations, restrictions and timelines for accessing treatment for your child with autism through this general treatment fund. There will also be an open mic time for you to provide input for this program. Please plan to be there if your schedule will allow.

Hope to see you there!

UAC Receives Award for Advocacy!

On April 12, 2012, our president, Mirella Petersen, received an award on behalf of the Utah Autism Coalition from the Autism Council of Utah. We are so very appreciative for ACU's recognition of our organization. We want to thank them for their support in our efforts in seeking autism insurance coverage and also thank them for everything they do for the community here in Utah. We are simply thrilled! Thank you!

Friday, April 13, 2012

URGENT! PEHP Autism Pilot Enrollment (correction and additional information)

In HB272 there are 3 different autism treatment options.  1) PEHP for Utah State Employees.  2) The Autism Treatment Account for the general public.  3) The medicaid waiver.  Please note that HB272 has restricted these programs to only be for children between the ages of 2-6 with a ASD diagnosis.

URGENT! Info for Utah State Employees - PEHP

If you are a state employee who qualifies for health insurance with the Public Employee Health Plan today is VERY IMPORTANT.  Open enrollment starts today as does enrollment for Utah State employees for the Autism Treatment Pilot and only the first 50 people who enroll are eligible for the pilot.  Make sure to keep a copy of your fax receipt or other documentation that shows you enrolled in the pilot.

We are working with PEHP to iron out all the wrinkles and problems and make sure the pilot does what is supposed to do… help children with autism access treatment.

Info about the Autism Treatment Account for the general public.

We do not have much information about the Autism Treatment Account that will serve the general public yet. However, there is a meeting of the Autism Treatment Account Advisory Committee next Tuesday, April 17th, at 1pm at the Children with Special Health Care Needs building at 44 N. Mario Capecchi Dr, 84114 in Conference Room A.  It is an open meeting.  If you are interested in utilizing this program we strongly encourage you to come and have your voice heard.

Medicaid Waiver

We apologize right now we don't have new information on the medicaid waiver.  When we do we will let you know.

If you have questions please email us at:

Thursday, April 12, 2012

Interview on BYU TV

Check out this great interview our own Christine Passey (VP of UAC) did on BYU TV yesterday:

Wednesday, April 11, 2012

UAC President on the Doug Wright Show

Mirella Petersen, president of the Utah Autism Coalition, gave a wonderful interview on The Doug Wright Show today. We're so thankful to Doug for taking the time to meet with her and for allowing us to continue informing the public regarding autism and the issues surrounding it. Below you will find the audio clip which contains yesterday's interview:

Saturday, April 7, 2012

Insurance for autism - Salt Lake Tribune

Here is a great article talking about the lack of autism insurance coverage in Utah.  Read and share!

Friday, April 6, 2012

Autism Awareness Day 6 - Call to action for UAC Members

The new autism prevalence rates of 1:88 children nationwide and 1:47 in Utah represent a call to 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. For Autism Awareness month, the Utah Autism Coalition will be featuring a call to action to a group of individuals each day of April.

Alright this post is a bit self-serving because it will save our volunteers time. 

Have you become a UAC member yet?  If you are already a UAC member have you updated your information recently?  As we start ramping up for meetings in preparation of the 2013 legislative session (yep we are starting to prepare now) it is imperative we have your information so we can inform you of legislator and area specific advocacy opportunities.  We promise we will never use your information for anything other than autism advocacy.

So here is the call to action. 
-Click on the link to the left that says “Get Involved Now!” 
-If you’re a new UAC member enter your information
-If you are already a UAC member, click “submit” on the next screen then make sure to update your information when you receive an email asking you to do so.

Big thank you!  This will save us lots of time as we work to consolidate our information.  Our goal is to be really specific with our alerts so you receive the alerts most important to you and your area.

The Utah Autism Coalition

Wednesday, April 4, 2012

Autism Rates are Climbing - The Daily Utah Chronicle

The Daily Utah Chronicle, the University of Utah student paper, interviewed UAC President Mirella Petersen and University of Utah professor of psychiatry and autism researcher Judy Zimmerman, for this article about the rise in autism rates.

Here is a great excerpt from the article quoting Mirella: “There’s a huge nationwide movement, and Utah is significantly lagging, which means … our children will be paying the price,” she said. “The cost we’re paying today is a direct result of not treating autism 10 years ago … as the problem continues to increase, the cost will only rise unless we [address it].”

Autism Awareness Month Day 4 - A call to all restaurant goers

The new autism prevalence rates of 1:88 children nationwide and 1:47 in Utah represent a call to 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. For Autism Awareness month, the Utah Autism Coalition will be featuring a call to action to a group of individuals each day of April.

Day 4: A call to all restaurant goers

As autism parents we have all received “The Stare.”  Laura from The Big Mak’s explains it perfectly in her post “The Stare.”  Here is an excerpt Because many of our kids lack the visual cue that they have a disability (a wheel chair, walker, distinguishable physical characteristic) the looks and stares can feel like a judgement or criticism.  The stares tend to come with the verbal outbursts, flapping, slapping clapping, hooting, screaming (you get the picture).  Many of these outward expressions of autism can be excused when the child is younger, but the tables are turned when your son is 6'3", 180 lbs, has facial hair and a deep base voice. “

To me it seems “The Stare” is particularly obnoxious when I am out with my family for dinner.  Going out to dinner is a treat for us, so we’d like to enjoy ourselves.  So today I am calling on restaurant goers everywhere to be a bit more understanding when a child/teenager/adult in the restaurant isn’t acting as you would expect.  Our world is full of so many different people it is impossible for you to understand what is going on with a quick glance, or even a long stare.

What we all need to do is take a lesson from one restaurant goer Laura met.  “He approached the table… and insisted on buying us dessert.” I don’t want to ruin the perfect way Laura tells her story so make sure to go read her post “The Stare.”

The take home message is everyone needs to be more understanding of others while sitting and enjoying our meals.

Thank you,
The Utah Autism Coalition

Tuesday, April 3, 2012

Autism Awareness Month Day 3 - A Call to Action for Cashiers

The new autism prevalence rates of 1:88 children nationwide and 1:47 in Utah represent a call to 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. For Autism Awareness month, the Utah Autism Coalition will be featuring a call to action to a group of individuals each day of April.

Day 3: A Call to Action for Cashiers 

Dear Grocery Store Cashiers,

Grocery stores, or stores in general, can be overwhelming for kids with autism.  They are loud, bright, have lots of people, and stuff is piled everywhere.  By the time families reach the cashiers not only are their autism kids overwhelmed, then all the neat new things need to be rung up.  Many times kids with autism don’t understand that they will get their desired item back after it is paid for, so melt downs ensue.

For this reason today the Utah Autism Coalition is calling on you to be more autism aware.  Realize that it is very possible the child who is having a hard time in your line doesn’t have a discipline problem; they are overwhelmed and trying to deal with it.  

Here is a blog post from Christine Passey at Autism Island about her experiences working towards more autism awareness with cashiers.

Thank you for your patience as we buy our groceries, clothes, and other random things.

The Utah Autism Coalition

Monday, April 2, 2012

Autism Awareness Month Day 2 - A Call to Action for the Autism Community

The new autism prevalence rates of 1:88 children nationwide and 1:47 in Utah represent a call to 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. For Autism Awareness month, the Utah Autism Coalition will be featuring a call to action to a group of individuals each day of April.

Day 2: A Call to Action for the Autism Community.

Dear Autism Community,

         I hadn't actually planned on posting a call to action for the autism community until a bit later in the month but a good friend came out with a blog post today that triggered the sentiments I had intended to share but could not have written as clearly and boldly as she did. I will be honest - the title threw me off. I am passionate about autism awareness and acceptance and would not call it "bull"; but I would call the bickering that sometimes goes on in our community "bull".

        Without further adieu - I issue a call to action to the autism community to open our hearts to each other and to those outside of our community who are caring enough to engage in constructive dialogue about autism. I encourage you to read today's Speaking on the Spectrum blog post at: Here is a highlight from this post:

"Here's the bottom line:

a- Whichever verbiage you use - autistic or person with autism - everyone should be respected.
b- Whatever your belief - Vaccines or Genetics or Environmental Factors or act of God - everyone should be respected.
c- Whether you want a cure or not - everyone should be respected.
d- Whether you medicate or don't medicate your child - everyone should be respected.
e- Whatever organization you support - everyone should be respected.
f- Whether you Light It Up Blue or choose another way to recognize the day - everyone should be respected.

Until the autism community comes together - truly comes together - those outside of our community will not pay attention to us. Those outside the community will never learn to adapt and accept those with autism because we can't even adapt and accept ourselves! We need to learn to be more tolerant."

Thank you,

The Utah Autism Coalition

Sunday, April 1, 2012

Autism Awareness Month Day 1 - A Call to Action for Insurance Executives

(posted on UAC''s facebook page yesterday): The new autism prevalence rates of 1:88 children nationwide and 1:47 in Utah represent a call to 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. For Autism Awareness month, the Utah Autism Coalition will be featuring a call to action to a group of individuals each day of April.

Day 1: A Call to Action for Insurance Executives.

Dear Insurance Executive,

          As the rates of autism continue to climb and answers as to what causes this disorder continue to evade us, you are hereby issued a call to action. You are called to take a stand now, before this ever-growing population becomes an adult population that is dependent upon society for much, if not all, of their care. You have in your power the ability to provide affordable, effective coverage for the diagnosis and evidence-based treatment that has been shown to reduce maladaptive symptoms of autism in 80-90% of those fortunate enough to receive it. Not only is this in your power, but this is ultimately in your best interest. The cost of treatment has been shown to be between $0.44 - $0.83 per member per month. The cost of NOT treating these children is so much more than financial; but if dollar signs are the only language you understand then you need to know that the care for an untreated individual with autism is estimated to be over $3 million dollars throughout their lifetime. The cost of offering effective, symptom reducing, life-enhancing, evidence-based treatment to children with autism seems rather small when put in those terms, doesn't it? And yet you continue to deny treatment to this vulnerable - and treatable - population.

         I recently spoke with a reporter who was inquiring about the problem parents face in accessing critical treatment for their children with autism. He posed an interesting question: "Is the only way to solve this problem to mandate insurance carriers to provide coverage for autism?" To that I responded, "No. There is nothing preventing insurance carriers from choosing to cover autism. The fact is, however, that they have seen the facts since 1987 and have deliberately chosen to continue the practice of discriminating against children with autism and to pass the burden of care onto to society, tax-payers and parents." It goes deeper than this, however. You have spent millions of dollars on lobbyists to fight against any legislation that would require coverage for autism. In a stroke of irony, one of your lobbyist approached me after a particularly devastating legislative meeting and told me that you are not against covering autism; you are just against a mandate requiring the coverage of autism. To that I responded, through gritted teeth and tears I refused to let fall in his presence, "Then show me the coverage."

         I repeat this call again. SHOW ME THE COVERAGE. This time my teeth are gritted, but the tears freely fall. Show me the coverage. Show the world you are a responsible industry. Show the world you are a team player in the healthcare industry. Show me the coverage. Spend your millions working toward solutions that are evidence-based and scientifically sound rather than paying high-powered lobbyists to fight against these solutions. As the numbers rise, I urge you... I plead with you... stop this insanity. Show me the coverage. Because one day, heaven forbid, you will find that YOU - yes you - are personally affected by this disorder in someway. You cannot continue to abandon this community, shirk social responsibility and perpetuate another lost generation and expect that society will not demand that you fulfill the role for which you exist: to cover medical conditions for your members. Show me the coverage.

         That said, I would like to highlight a group of responsible businesses who are self insured and have CHOSEN to address this problem head on. I would like to lead off with Home Depot, who has decided to offer an autism benefit to their employees 8 years ago. They continue to fight for awareness and equality in the medical coverage offered to children with autism. If fact, you can purchase autism awareness blue light bulbs there right now. Go buy a few and start today by lighting up your porch. Then show me the coverage. Other responsible self-adopting companies include:
  • Microsoft
  • Intel
  • Capital One 
  • Arnold & Porter
  • Eli Lilly
  • Deloitte
  • The Ohio State University
  • Mayo Clinic
  • HealthCentral
  • Lexington Medical Center
  • University of Minnesota
  • Progressive Group
  • Greenville Hospital System
  • Time Warner
  • City of Atlanta
  • Oracle
  • Adobe Systems Inc.
  • Yahoo Inc.
  • Cisco 
  • DTE Energy 
  • Princeton University
  • Children's Mercy
  • Aspect Software 
  • Partners Healthcare
         As you will notice, covering autism hasn't caused these companies financial strain. These are successful, thriving socially responsible organizations. Take a page from their book. You might find that doing the right thing doesn't feel as icky as you think it would and then you wouldn't have to endure the discomfort of being told what to do. Again: Show me the coverage.


The Utah Autism Coalition