President Obama and HHS Secrecarty Sebelius state support for reauthorization of the Combating Autism Act

June 9, 2011

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Speech given by HHS Secretary Kathleen Sebelius during White House event celebrating Autism Awareness Month:


Autism Awareness Month

April 25, 2011
Washington, DC

Thank you for that kind introduction.

I am delighted to be here to join so many advocates, experts, and leaders in our work to support children and adults affected by autism.

I want to thank Michael as well as President Obama and the First Lady for welcoming all of us here today, but more importantly for their terrific leadership on this issue.

Helping every American with autism reach their full potential is one of this administration's top priorities.

At the Department of Health and Human Services and across the government, we have come together to leverage our collective assets and resources to better care for the people it affects and their families.

We recognize that in the last few decades, the landscape has changed dramatically, bringing new challenges for families, schools, and health care providers.

As recently as the 1990s, scientists thought autism was a rare disorder that affected 1 in every 2000 kids. Today, our most recent data says that autism affects 1 in every 110 children.

Almost every American I talk to about this issue knows at least one family that is affected by autism.

To be clear, we know that many people with autism spectrum disorders are able to lead full and productive lives. However, we also know that many individuals need assistance, and sometimes intense health care and supportive services. HHS especially wants to help these individuals and their families who are facing serious challenges.

For so many families, there are still more questions than answers: Which treatments can help? Where can they get the services they need?

As a community and a nation, we all want to dig down and figure out what causes autism and how it can be prevented.

We have better answers to these questions today because of the Combating Autism Act, a law that sparked real progress for people with Autism and their families.

Thanks to better data collection, we now have better information about when and where autism occurs. In 2009, the National Database for Autism Research had just 500 people registered in autism studies. Today we have 54,000.

We know more about treatments that work and services that help.

We also know that early intervention can greatly improve a child's development. The first three years are particularly critical. And that's why we are educating more health professionals to recognize the signs of autism early, so children can get treatment when it is most likely to be effective.

We continue to identify the gaps that still need to be addressed.

For example, we know that we can do a better job making sure the latest research findings are incorporated into the services and supports we provide for families with autism.

That's why our Department has created two national autism research networks that will allow researchers to gather data from different sites in order to identify the most promising treatments for autism.

These networks will also create channels for these best practices to flow back to parents and providers around the country, so that Americans can have the latest evidence on which treatments may work and which may not.

At the state and local level, we have more work to do to break down old barriers and build productive partnerships.

Our Department just released a new report confirming that significant challenges still exist when it comes to designing services, payment and delivery for people with autism spectrum disorder.

But we're finally moving in the right direction.

Medicaid has begun supporting approaches like the medical home models that can help children with autism get the kind of coordinated, family-centered care that helps them thrive.

And it's working with states to provide targeted case management that helps kids with autism get the support they need at home and at school.

We're also learning from the latest research.

Earlier this month our Interagency Autism Coordinating Committee highlighted some of the most exciting recent research including studies exploring high-tech imaging techniques, new genetic risk factors, novel ways to diagnose autism spectrum disorder using speech patterns, and the first intervention proven to be effective for toddlers.

These are the kind of projects that give us hope. A few years ago, many of these efforts would have been the stuff of pure imagination, but today we have hard evidence and it's showing the way forward.

Researchers are also now starting to classify subcategories of autism, making it easier to tailor interventions to respond to individual need.

Since 2006, the National Institutes of Health commitment to autism research has doubled. They currently support 11 Autism Centers of Excellence around the country where teams of specialists can come together at a single facility to address a particular research problem in depth.

So, along many different avenues, our investments are paying off in the form of greater knowledge, better treatment, and improved services.

But perhaps the biggest step we've taken to support those living with autism and their families came just over a year ago when President Obama signed the Affordable Care Act into law.

For so many families, learning that their child had autism did not only lead to tough, complicated questions about care and treatment.

It also brought big bills and often, incredibly discouraging news from their insurance company.

But that's changing.

The health care law is already helping to ease the financial burden that often comes with treating and caring for people with autism spectrum disorder.

The law requires new plans to cover autism screening and developmental assessments for children at no cost to parents.

And insurers will no longer be allowed to deny children coverage for a pre-existing condition, and that includes autism spectrum disorder.

They're also no longer allowed to set arbitrary lifetime limits on benefits that can mean your coverage disappears when you need it most.

And we know that entering adulthood brings a whole new set of challenges. Thanks to the new law, young adults will be allowed to stay on their family's health insurance until they turn 26.

For a young adult with autism spectrum disorder and their family, that means peace of mind. It means more flexibility, more options, and more opportunity to reach your full potential.

What all of these steps mean is that there's more support for Americans with autism than ever before - and more promise of new breakthroughs that will help us understand it even better.

Unfortunately, as you know, the Combating Autism Act is set to expire this year.

You also know we have important work still to do - more research to carry out, more treatment to develop and refine, and more tools to give doctors and nurses so they can get even better at diagnosing autism early.

That is why the President and I fully support reauthorizing the Combating Autism Act this year.

We have made real progress in our work to meet the complex needs of all people with autism spectrum disorder and their families. We cannot afford to stop now and we won't.

If we are going to succeed in understanding and meeting the needs of people with autism, we need to take a comprehensive approach.

Health care providers play a central role. But so do parents and schools, coaches and faith leaders, youth advocates and community leaders.

We're taking a leadership role at HHS, but we know that our efforts make a much deeper impact when we collaborate with partners at the Departments of Education, HUD, Justice and Labor.

We recently established a new national resource and information center to provide information on community-based services and interventions for people with autism spectrum disorder and their families.

And last month, we announced a new website that provides job skills training for high school graduates who have autism spectrum disorder or certain disabilities.

I want to thank you again for welcoming me here today and for your partnership in this effort.

I look forward to hearing the new ideas and strategies that come out of today's Breakout Sessions.

We still have more questions than answers about autism spectrum disorder. But we're working harder than ever before to find those answers. And together, we are building a world where everyone can reach their greatest potential.