Tuesday, March 17, 2009

Contact your legislators / Meeting Thursday Night

We all needed a short break after the legislative session ended to reconnect with our families and reflect on how Clay's Law was treated by the legislature. We are now trying to map out our strategy for the interim and the next legislative session.

This is what we need to get going on right now.
1. Contact your legislators and let them know of your extreme disappointment that Clay's Law didn't pass. Politely ask them to take a more active roll in supporting Clay's Law next session.
2. Contact Speaker Clark and politely tell him that you are disappointed that Clay's Law was never released from the House Rules Committee for a vote.
3. Write letters to the editor or op-eds to your local newspapers as well as Deseret News and The Salt Lake Tribune.
4. Please put your feelers out there in the autism community to find more people who are willing to support Autism Legislation in the future. We have to be a bigger and stronger coalition next year. We need to show the legislature that we are not going away, in fact, we are getting a louder voice. Please help us by asking everyone you know to register with us.

The Utah Autism Coalition will be holding a meeting on Thursday evening at 7pm. We are meeting at the West Jordan Library at 1970 West 7800 South, West Jordan.
Some of the information to be covered is:
- How the legislative session ended for Clay's Law.
- Plans for the interim and the future of The Utah Autism Coalition.
- What you can do to help over the next nine months.
Please join us to participate in the discussions to help us set the stage for getting Clay's Law passed next legislative session.

Thank you for keeping up the fight!!!

Tuesday, March 10, 2009

More information coming on the sad turn of events...

Please be patient with us as we work to disseminate information on the events that occurred over the past few days which ended hopes for passing Clay's Law this legislative session. 

Another amendment forces us to withdraw support for SB43



SB 43 has been stripped of its effectiveness to stop autism insurance discrimination

SALT LAKE CITY (March 10, 2009) – The Utah Autism Coalition, the largest autism advocacy group in Utah, announced today they are withdrawing their support for Senate Bill 43, formerly known as Clay’s Law.

Senate Bill 43 was significantly altered to become an amendment to the HIP Act (Health Insurance Pool) that creates a limited insurance policy to cover the treatment of autism spectrum disorders, when obtained prior to a child’s birth. Senate Bill 43, formerly known as Clay’s Law, originated as an autism insurance mandate to require private insurance companies to cover diagnosis and treatment of autism spectrum disorders up to age 17. SB 43 was amended before the third senate reading to a mandate option, and has now been amended even further as a HIP offering.

“Clay’s Law” no longer exists in this legislative session. Our elected officials have failed to act upon the cries for help from their constituents to provide desperately needed treatment for their children, and the pleas of taxpayers for financial relief to the state,” said Leeann Whiffen, mother of Clay Whiffen, who requested that Clay’s name be removed from the bill. “Senate Bill 43 is now a far cry from the financially and morally responsible bill we created. The window of opportunity for optimal treatment will likely close for many children who currently have autism across our state while we agonizingly wait for lawmakers to do the right thing.” The latest version of SB43 will only benefit children who have yet to be born, and only if their parents purchase a policy before 3 months of age.

Autism Speaks, the largest national autism organization, joins the Utah Autism Coalition in withdrawing support for SB 43. "It's the No. 1 thing we hear from parents - what's more difficult than knowing there's an effective treatment for your children, but you can't afford to offer it to them because it's not covered by insurance?" said Elizabeth Emken, the group's vice president of government relations. “Autism Speaks and the Utah Autism Coalition call on Utah’s legislators to join the growing number of states that have ended healthcare discrimination against children with autism.”
The Utah Autism Coalition will continue advocating for autism insurance coverage in Utah until it eventually becomes law.

About Autism
Autism is a complex brain disorder that inhibits a person's ability to communicate and develop social relationships, and is often accompanied by behavioral challenges. Autism spectrum disorders are diagnosed in one in 150 children in the United States, affecting four times as many boys as girls. The prevalence of autism has increased tenfold in the last decade. The Centers for Disease Control and Prevention have called autism a national public health crisis whose cause and cure remain unknown.

About Utah Autism Coalition
The Utah Autism Coalition, founded in 2008, is an independent group of parents and professionals dedicated to increasing autism awareness and advocating for legislation to support the autism community in Utah. To learn more about the Utah Autism Coalition, please visit www.utautismcoalition.blogspot.com.

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Monday, March 2, 2009

Call Your Representative ASAP!

Lets Give It One Last Push!

The Legislative session ends on March 12th. That is less than two weeks away. So don't give up on us now!

Today Senate Bill 43 - Clay's Law, was read into the House of Representatives. It is our understanding that we may not have to have another committee hearing in the House because there is so little time left in the session. Our bill could go for a vote on the House floor this week. We need to make sure that we all speak to our representatives ASAP. Please call them, even if you just leave a message. Send them an email with your child's picture attached to it. We need to make sure that they are hearing our personal stories of autism before they vote on Clay's Law. Once we know the date of the vote, we will let you know as soon as possible.

If you don't know who your Representative is, you can find out by entering your address at www.votesmart.org.
Contact information for each Representative can be found here: http://www.le.state.ut.us/house/members/membertable1add.asp

Thank you for all your help and support so far. We could not do this with out each and every one of you.