Autism Advocates Scheduled to Meet with Obama Transition Team

A small group of autism advocates are scheduled next week to discuss disability and health care policy with President-elect Barack Obama's transition team, according to one of the advocates invited to the event.

Ari Ne'eman, president of the non-profit organization Autistic Self Advocacy Network (ASAN), has communicated with other advocates for people with autism that he was invited to speak with members of Obama's team, and said he seeks input from others in the community. In an e-mail message distributed by The Autism Acceptance Project, Ne'eman, wrote:

Early next week, the Autistic Self-Advocacy Network (ASAN) has been invited to give input to the Office of the President-elect at two meetings relating to disability policy in the upcoming administration. The first meeting will focus on autism policy issues specifically while the second will focus on health care policy from the disability perspective. The meetings will be small, intimate and include representatives from several other autism and/or disability organizations as well.

I'd like to take this opportunity to invite people to give their thoughts as to what issues matter to them in relation to Autism Policy and Health Care Policy in the upcoming administration. We've been asked to take 2-3 policy priorities into the first meeting and will want to represent some of the specific needs of autistic self-advocates in the second. As an organization that seeks to represent the needs of the community of autistic people and to fight for the rights of ourselves, our families and our supporters, we want to hear from you.

The Autistic Self Advocacy Network is based in Washington, D.C., and was founded by Ne'eman, who explains in his website biography that he's a student at the University of Maryland-Baltimore County. Ne'eman, who has been diagnosed with Asperger's, runs this group along with others with autism spectrum disorders. The group's website notes: "ASAN's public policy initiatives involve advocating for greater support and understanding for adults and children on the autism spectrum."

What priorities would you advocate? Here's the contact information for Ari Ne'eman via e-mail: aneeman@autisticadvocacy.org.

Also see:

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

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.

Kansas Advocates Say State to Consider Autism Insurance Bill

Kansas lawmakers are getting ready to consider a bill that would require health insurance plans to cover diagnosis and treatment for autism spectrum disorders, including services like applied behavior analysis to cover citizens of the state until age 21. The proposal also calls for an exclusion for small businesses who would not have to offer such services through their health plans.

The proposal, referred to as "Kate's Law," follows the establishment of the Kansas Autism Task Force, a panel of citizens set up by the state in 2007 to look into the needs of people with autism.

The Kansas Coalition for Autism Legislation has lots of information about the proposal on its website and its special Kate's Law web page.

The bill itself has not been introduced officially in the legislature, but the outlines of it are slated to include the following, according to the Kansas Coalition for Autism Legislation:

• Health insurance policies must provide coverage for the diagnosis and treatment of autism spectrum disorders
• “Treatment” includes any therapy prescribed by the attending physician and includes applied behavior analysis, speech therapy and occupational therapy
• Coverage for applied behavior analysis shall be subject to a maximum benefit of $75,000 per year through age 21
• Small businesses, i.e. employers with 50 or fewer employees, may “opt out” of these provisions
• Health insurance companies cannot deny coverage on an individual solely because the individual is diagnosed with an autism spectrum disorder

The Kansas advocates for this bill, who are gearing up for a public education and awareness campaign, have posted a couple of YouTube videos explaining the medical, social and financial implications for a family that received an autism diagnosis. The first video is below, or if you reading this via e-mail subscription, you can find the 7-minute clip here.

Watching Obama's Stimulus Package and How States Receive Federal Aid

President-elect Barack Obama committed himself to helping state governments deal with economic problems and budget shortfalls in a meeting in Philadelphia on Dec. 2. Assuming the new Obama administration can win support after taking office in January and start implementing its plans, this is good news for many who care about services delivered at the state level.

While this issue clearly goes beyond services for people with autism spectrum disorders, it will be important for advocates to watch how state-level budget discussions progress. Most state governments—41 out of 50 as of this week, The New York Times reported— are forecasting budget deficits this year.

In Massachusetts, Gov. Deval Patrick told WBUR radio in Boston that Obama and governors shared a strong consensus that a new stimulus package will focus on "job creation, to build roads and bridges, restore rail systems, install green technology, refurbish public buildings." Patrick added that governors told Obama states need help with rising demand for services like Medicaid, food stamps and unemployment benefits, which are rising as state revenues fall.

Update: WBUR posted the audio clip of the interview with Deval Patrick at my request. Here it is:


Those points are clear: new federal money for roads, bridges, buildings, new environmentally-friendly fixtures and technologies. Help for people hurt by the recession.

What's not clear so far is how operating budgets are faring at the state level, and at the level of cities and towns, where our kids go to school, for example, or other important services get delivered. Those are the decision-making processes that bear close scrutiny, and likely, some advocacy.

If you have information about goings-on in your state, please feel encouraged to post a comment below this post.

Below is a video of Obama's remarks at the governor's conference on Dec. 2 in Philadelphia, via Yahoo video.

President-elect Obama and governors tackle the economy @ Yahoo! Video