Thursday, December 11, 2008

Autism Society Urges Families to Voice Concerns to Obama's Transition Team

The Autism Society of America, a leading advocacy group for parents and families, is urging its members to post comments citing the need for autism support services and full funding for the Individuals with Disabilities Education Act on President-Elect Barack Obama's transition team website, Change.gov.

The Obama team has continued its use of web-based technologies honed during the election campaign, both to inform and engage voters and raise record amounts of money. During the transition between presidencies, Obama has used Change.gov to speak directly to voters through video and other means—and engage citizens on ideas that are important to them. (Here's a New York Times article discussing this feature.) With the floor open for discussion on a range of issues, the Autism Society says now is the time to join the online meeting to discuss healthcare policy, which is titled, Health Care — Of the People, By the People.

The Autism Society has posted a web page with suggestions for submitting comments. The substance of the Society's suggestions are below:

Start off with a brief explanation why you are concerned and want things to change.

I am the parent of a child with autism and I want my child to have happy and productive life just as any parent would want for their child.

Provide some facts such as:

Prevalence

  • 1 in 150 U.S. children is diagnosed with autism. Boys are four times more likely than girls to have autism.
  • 1.5 million Americans have an autism spectrum disorder

Diagnosis

  • Less than a decade ago, the disease was diagnosed at age 3 or 4. Now it is routinely diagnosed at 2.
  • Symptoms range from mild to severe. Many people with autism display rigid routines and repetitive behaviors.

Cost

  • Lifetime cost of caring for a child with autism: $3.5 million to $5 million
  • Annual U.S. cost: $90 billion

The explosion of autism spectrum disorders (ASD) and related disorders in the United States constitutes the largest health care crisis in our nation’s history. It has been estimated that 1 in 150 children will be diagnosed with ASD, with recent data suggesting that as many as 1 in 67 boys are now affected.

Autism is the fastest growing disability in the country, now affecting an estimated 1.5 million individuals - more prevalent among our children than pediatric cancer, diabetes, and AIDS combined. There are approximately 24,000 new cases of autism diagnosed each year. Every 20 minutes another child is diagnosed with autism in the United States.

The alarming increase in autism spectrum disorders must be considered a national health emergency that requires the allocation of significant resources, aggressive research toward effective treatments for those affected, and rigorous investigation into causation for the protection of future generations. Equally important is to ensure that individuals affected by autism receive help TODAY.

Offer solutions, such as:

Legislative Agenda

Please support Expanding the Promise to Individuals with Autism Act. This bill would provide adults the services they need to lead a productive and meaningful life. The Autism Society of America works to ensure that adults living with autism have access to appropriate employment, housing, and services. ASA chapters have been instrumental in developing job training programs and creating independent living or residential services opportunities for adults with autism. This act will allow these programs to grow and serve more adults nationwide.

Please support Full Funding of the Individuals with Disabilities Education Act. Federal funding is $10.5 billion short of full funding this year leaving thousands of children without services.

Autism is the most costly disability confronting our public education system. The federal government should provide local education agencies the resources they need to serve children with autism.

The Autism Society of America is experiencing an explosion of information and referral requests from teachers. Teachers are clamoring for additional training - and ASA has met their demands by hosting a training conference for teachers - but much more needs to be done.

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