Utah Autism Coalition

Info on Pilot Programs for Autism Services

noreply@blogger.com (Christine Passey) — Tue, 22 May 2012 06:06:00 +0000

We are happy to pass on some information we recently received about the three programs that were created through HB272: the medicaid autism waiver, autism treatment account, and PEHP pilot. We applaud the committees and organizations as they work within the confines of this limited law to serve as many children as possible.

"Hey everyone,

I've been attending/participating on several autism committees as a result of recent legislation. Even though we are spending lots of time on this, we have SO much red tape to wade through and we have to follow the law...darn it, so the Autism Treatment Fund and the Autism Medicaid Waiver will probably not be available until later this summer. You can follow the three autism programs on the following websites:

http://www.health.utah.gov/cshcn/autism.html - Autism Treatment Fund
http://health.utah.gov/autismwaiver/ - Autism Medicaid Waiver
https://www1.pehp.org/ - This is the insurance for State employees only. Go to this website, go to "mypehp" and login with your employee login to get info.

There isn't a lot of info yet, but these websites are where it will be posted!!

Cheryl C.Smith"

5 reasons your child should be friends with someone who has special needs

noreply@blogger.com (Mirella Petersen) — Fri, 18 May 2012 16:14:00 +0000

This blogpost by Jo Ashline, on The Mom Blog, is one the my favorite posts I have read is a while. I feel lucky that my kids have lots of opportunities to interact with people who have special needs. I have had some parents tell me that they intentionally avoid play dates or classroom settings with children with autism because they don't want their kids to "learn autistic behaviors". While I recognize this is simply reflective of a lack of education on autism (you cannot learn, teach or fake autism), I feel sorry for their children who miss out on some fabulous opportunities that would come from interacting with children that have special needs. Check out what Jo Ashline has to say about this and then take a look at my personal experience in this arena.

5 reasons your child should be friends with someone who has special needs

Being a part of the "autism family" in Utah, my kids have had the opportunity to have play dates with kids with varying disabilities.The night before "Light it Up Blue" for Autism Awareness my 3 sons and I spent the evening with my friend Katrena and her son Michael, who has non-verbal autism. Michael showed off his service dog and gave my boys a tour of his room. They crashed trucks together and played with toys. They shared some snacks and played with each other brilliantly while the momma's chatted. Most of that play date you wouldn't be able to tell which kids had disability and which did not.

When we left that night (after my boys begged to stay longer) I expected them to ask about Michael's wheelchair or his service dog or his lack of words. I was prepared to give them a great teaching moment about how everyone is different and it's so important to include them. The teaching moment came, but I was the student. As we backed out of the driveway with Michael waving good-bye to us, my 5 year old Mason said, "I like him. We should play with him again." My boys talked about how awesome Michael was all the way home. Not one thing about his disability was even mentioned - because it didn't even cross their minds. It just simply didn't matter to them or even occur to them as something warranting discussion. Instead, they talked about all the cool things about their new friend and asked when they could play with him next.

My idea of teaching them to accept children with disabilities was based on the faulty assumption that they would naturally shy away from someone with some noticeable challenges different from theirs. I learned that a more realistic assumption is that young children naturally accept and embrace diversity until the world teaches them to do otherwise.

When children are given opportunities to make friends with children with special needs, the process of the world teaching them that "different is bad" and "conformity is necessary" is stifled and their natural childlike acceptance of others becomes a part of the fabric of their souls.

Conner (3), Jaden (5), Mason (5), Michael (9) having a fun time on their play date.

Westminster College’s fifth annual - Family Fun Day 2012

noreply@blogger.com (Christine Passey) — Thu, 17 May 2012 03:39:00 +0000

Westminster College’s fifth annual

Family Fun Day 2012

Date: Saturday, May 26, 2012

Time: 2-4 pm

Place: Westminster College, 1840 S 1300 E — Richer Commons (in case of inclement weather, the event will be held in the hallways of the Malouf building)

Event: We are hosting our 5^thannual family fun day for children with autism and their families—yes, siblings too! Westminster students taking a class about autism will provide around 20 various activity stations, including a sensory station, finger painting, bubbles, and more. Due to overwhelming interest on campus, there are two sections of the course running this year! Special guest activity includes adults with autism who will provide face painting. Healthy refreshments will be provided!

Cost: FREE!!

Contact: To RSVP, or if you have any questions, please call Shamby Polychronis at

(801) 832–2489.

We look forward to seeing you!!

This year’s sponsors include:

KUTV: Take Two - Autism

noreply@blogger.com (Mirella Petersen) — Sat, 12 May 2012 01:48:00 +0000

Rod Decker speaks with Dr. Judith Pinborough Zimmerman, Lead Researcher

for the Utah Autism Registry, and Mirella Petersen, President of the

Utah Autism Coalition, about increasing awareness of Autism.

Click HERE to view the full interview.

SL Trib - Utah autism treatment pilot struggles for funding

noreply@blogger.com (Christine Passey) — Thu, 10 May 2012 21:24:00 +0000

We wanted to share this article. The original piece can be found here.

Utah autism treatment pilot struggles for funding

By Julia Lyon | The Salt Lake Tribune

Despite assurances during the Legislative session that major insurance companies and a bank would donate $1 million toward a new autism treatment pilot, the state has not yet received any money.

That could halve one part of the program, set to begin this summer, at a time when a study of a small area in Utah indicated the state could have the highest autism rate in the nation.

"As of right now there is no money," said Marc Babitz, director of the Division of Family Health and Preparedness at the Utah Department of Health. "I am not aware of one private donation."

But Rep. Ronda Menlove, R-Garland, who sponsored the bill to create the pilot, says there is "no question" that money is on its way.

"We’ve been working with the entities this past week working out the details," she said.

Expected donor Zions Bank did not immediately comment. Intermountain Healthcare says it plans to provide financial support although the details are still being finalized.

The two-year pilot program is expected to pay for therapy for about 350 children between the ages of 2 and 6, through a combination of Medicaid, state and private dollars.

Three groups of children will be served, including up to 50 covered by the Public Employees’ Benefit and Insurance Program; at least 200 kids covered by Medicaid, supported by $4.5 million in Medicaid dollars; and up to 100 from the autism fund, paid in part with private dollars. Those children may be on private insurance or be uninsured.

Babitz said he remained hopeful the private money would still materialize; $1 million in state dollars will become available in July.

"I know how people have to budget their funds," he said. "If someone is going to donate $100,000 or a million it’s not just sitting around in a bank account."

Whether the private dollars appear or not, the pilot program will only be able to serve a small fraction of the number of Utah children with autism, which some estimate to be as high as 5,000. Children served by the autism fund will be selected in a randomized process, not necessarily based on the severity of their diagnosis.

The earliest the treatment program will start is August, due to the bureaucratic steps that remain, such as a public comment period.

"We know the tremendous need," Babitz said. "It’s better to take one step forward than do nothing."

But for one advocate of families with autistic children, the fact that the dollars have yet to show up is not a surprise.

"I’m not shocked," said Mirella Petersen, president of the Utah Autism Coalition. "Because historically in every single state [insurers] have not done that until they have been required to do something."

From New Jersey to New Mexico, a growing number of states are requiring health insurance to cover treatment for autism, the cost of which can run in the tens of thousands per year.

"The fund itself is an ineffective medium," she said, explaining that families would like to be able to access treatment directly. "Even more money wouldn’t help that much if we don’t expand the age range to cover the bulk of the children that need help."

This is how we feel about this whole fiasco.

What To Say To An Autism Parent

noreply@blogger.com (Margie (Tired Mom)) — Wed, 09 May 2012 05:07:00 +0000

Ever wonder what you should say to a person who has a child with autism? Ever wonder what you could do to help them? Or suddenly you have a family member with a child with autism - now what? With the rate of autism being higher than its ever been, chances are you will come in contact with someone affected by autism in one form or another. Our VP Christine put together this great list of things you could say to help. Read it, pass it along, and maybe you'll find something that might be helpful to you or a loved one.

http://www.autism-island.com/2012/04/50-things-you-should-say-to-autism.html

Attention Ogden, Price, St. George, and Provo autism families

noreply@blogger.com (Margie (Tired Mom)) — Thu, 03 May 2012 15:25:00 +0000

Attention Ogden, Price, St. George, and Provo autism families. There are four upcoming meetings to make you aware of. They all pertain to the new medicaid autism waiver. Please review the locations of these meetings and attend the one nearest to you.

General Information:

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.

Is there a number to call if I have questions about the meeting? 801-538-6955

Meeting Dates and Locations:

Thursday, May 10, 2012 from 2:00 P.M. - 4:00 P.M.Weber Human Services Building
Auditorium (3rd Floor)
237 26th Street
Ogden, Utah

Thursday, May 17, 2012 from 1:00 P.M. - 3:00 P.M.
South Eastern Utah Association of Governments
375 South Carbon Avenue
Price, Utah

Thursday, May 24, 2012 from 4:00 P.M. - 6:00 P.M.
Five County Association of Governments
1070 West 1600 South, Bldg. B.
St. George, Utah

Wednesday, June 6, 2012 from 2 P.M. - 4:00 P.M.
Provo City
Council Chambers
351 West Center Street
Provo, Utah

Hope to see you there!

Important Update Regarding PEHP Pilot Program

noreply@blogger.com (Margie (Tired Mom)) — Sat, 28 Apr 2012 04:19:00 +0000

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:

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.

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 1^st, 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 1^st, then they meet the age criteria for participation.

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.

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 1^st 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.

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.

Style Night Out - Autism Speaks Walk Benefit Event

noreply@blogger.com (Christine Passey) — Wed, 25 Apr 2012 17:05:00 +0000

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!

Make sure to RSVP on the Facebook event page.

Autism Advocacy - It Takes A Village

noreply@blogger.com (Margie (Tired Mom)) — Tue, 24 Apr 2012 19:25:00 +0000

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
mirellapetersen@gmail.com

Upcoming Autism Medicaid Waiver Meeting

noreply@blogger.com (Margie (Tired Mom)) — Thu, 19 Apr 2012 16:17:00 +0000

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?
801-538-6955

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

Join UAC in the Walk for Autism!

noreply@blogger.com (Margie (Tired Mom)) — Wed, 18 Apr 2012 23:32:00 +0000

Donate/Join the UAC Team!

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!

Image: David Castillo Dominici / FreeDigitalPhotos.net

Alert: Important Meeting on Tuesday!

noreply@blogger.com (Margie (Tired Mom)) — Sun, 15 Apr 2012 23:59:00 +0000

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!

noreply@blogger.com (Margie (Tired Mom)) — Sun, 15 Apr 2012 18:40:00 +0000

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!

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

noreply@blogger.com (Christine Passey) — Fri, 13 Apr 2012 18:36:00 +0000

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: utahautismcoalition@gmail.com

Interview on BYU TV

noreply@blogger.com (Margie (Tired Mom)) — Thu, 12 Apr 2012 18:05:00 +0000

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

UAC President on the Doug Wright Show

noreply@blogger.com (Margie (Tired Mom)) — Wed, 11 Apr 2012 23:52:00 +0000

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:

Hosted by kiwi6.com file hosting. Download mp3 - Free File Hosting

Insurance for autism - Salt Lake Tribune

noreply@blogger.com (Christine Passey) — Sat, 07 Apr 2012 21:26:00 +0000

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

Insurance for autism - Salt Lake Tribune

Autism Awareness Day 6 - Call to action for UAC Members

noreply@blogger.com (Christine Passey) — Fri, 06 Apr 2012 16:02:00 +0000

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.

Thanks,

The Utah Autism Coalition

Autism Rates are Climbing - The Daily Utah Chronicle

noreply@blogger.com (Christine Passey) — Thu, 05 Apr 2012 04:18:00 +0000

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].”

Click here to read the full article by Megan Gessel. Autism Rates are Climbing - The Daily Utah Chronicle.

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

noreply@blogger.com (Christine Passey) — Wed, 04 Apr 2012 23:00:00 +0000

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

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

noreply@blogger.com (Christine Passey) — Tue, 03 Apr 2012 19:44:00 +0000

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.

http://www.autism-island.com/2012/03/raising-autism-awareness-one-cashier-at.html

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

The Utah Autism Coalition

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

noreply@blogger.com (Christine Passey) — Mon, 02 Apr 2012 19:42:00 +0000

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: http://speakingonthespectrum.blogspot.com/2012/04/autism-awareness-and-acceptance-bull.html. 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

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

noreply@blogger.com (Margie (Tired Mom)) — Mon, 02 Apr 2012 05:20:00 +0000

(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.

Sincerely,

The Utah Autism Coalition

Prevalence Rates Press Conference

noreply@blogger.com (Margie (Tired Mom)) — Thu, 29 Mar 2012 20:36:00 +0000

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

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

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

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

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