"Expanding The Promise For Individuals With Autism Act Of 2007"
Floor Speech
``EXPANDING THE PROMISE FOR INDIVIDUALS WITH AUTISM ACT OF 2007'' -- (Extensions of Remarks - April 19, 2007)
* Mr. SMITH of New Jersey. Madam Speaker, I want to express my strongest support for the ``Expanding the Promise for Individuals with Autism Act of 2007,'' H.R. 1881, and I was very pleased to join my friend and colleague Rep. MIKE DOYLE of Pennsylvania this week in introducing this important legislation. H.R. 1881 addresses a very critical need--to provide assistance to the 1.5 million Americans with autism who are in desperate need of treatments and services throughout their lives.
* From my first session in Congress in 1981, I have been a consistent advocate for individuals with developmental disorders, including autism. But autism came into a particularly strong focus in 1998, when two of my constituents, Bobbie and Billie Gallagher of Brick, NJ, contacted me with concerns about an elevated level of autism cases in the township of Brick. The concerns of the Gallaghers--parents of two autistic children themselves--led me to request that the Federal Agency for Toxic Substances and Disease Registry and the Centers for Disease Control and Prevention, CDC, conduct an investigation into a possible autism cluster in Brick.
* The results of this investigation, one of the first federal studies on autism, were quite alarming. Higher rates of autistic disorder and autism spectrum disorders, ASDs, were found in Brick Township relative to rates from previously published studies. However, we have now come to learn that the high rate of autism found in Brick Township was not an isolated incident; it was the window to a nationwide phenomenon.
* Earlier this year--on February 8, 2007, the CDC released groundbreaking data documenting the high prevalence of autism around the country. As a result of this landmark study, it is now believed that 1 out of every 150 children born in the United States suffers from a form of autism.
* The numbers are even more shocking when you examine the results from New Jersey. Autism was shown to affect 1 in every 94 New Jersey children analyzed in the recent federally funded study. That same study, based on 2002 data, showed that 1 in every 60 boys in New Jersey is afflicted with a form of autism.
* While the numbers are profound, it is the reality of the lives behind the numbers which call for our compassion, dedication, and legislative action. The physical, emotional, and financial impacts of autism on individuals, families, and society are staggering. Autism can overwhelm families, as their lives become consumed with the considerable challenges of identifying appropriate biomedical and psychosocial treatments, schooling and other needed support systems for their autistic child--and eventually for an autistic adult. Most of the parents of an autistic child whom I have met express a high level of fear and apprehension about services--such as housing and employment assistance--that will be available when their child becomes an adult.
* That is why I joined forces with my friend Mike Doyle to launch in January 2001 the Congressional Coalition for Autism Research & Education, C.A.R.E., which currently includes over 160 Members of Congress. The goals of the bipartisan Coalition for Autism Research and Education are straightforward, to: increase general awareness of autism and autism spectrum disorders among Members of Congress and policy analysts in Federal government; educate Members of Congress on current and future initiatives and developments regarding autism; serve as a forum where autism-related policy issues can be exchanged, debated, and discussed; bring together public, private, and government entities to pursue legislative initiatives that will help improve the lives of individuals with autism and their families; and promote all means to assist with the challenges of families and loved ones affected by autism.
* Although it is still not sufficient, we have had significant success in advocating for increased funding for autism programs--funding that has increased by nearly 10 times the amount it was in the mid-1990s. In 1995, NIH invested about $10.5 million into autism research. The estimated budget for autism research in fiscal year 06 is nearly 10 times that amount--$108 million. At the CDC, autism funding has increased from $287,000 in 1995 to an estimated $15.1 million in 2006.
* By introducing the ``Expanding the Promise for Individuals with Autism Act,'' EPIAA, we are building on our progress over the past decade and particularly on some legislative accomplishments during the last Congress. Many members of the C.A.R.E. caucus joined in supporting and passing last December the ``Combating Autism Act,'' important legislation which focused on improving autism-related research funded through the National Institutes of Health, autism surveillance, and early screening and diagnosis. Also last year, the caucus was successful in securing in the Fiscal Year 2007 Department of Defense Appropriations bill $7.5 million in an Army research account for the purpose of improving treatment of individuals with autism.
* Notably, these successful efforts to date have focused primarily on surveillance and biomedical research. While these efforts are absolutely critical, the reality is that we have approximately 1.5 million individuals in the U.S. with autism, and they and their families are in desperate need of services to assist them in their daily lives and to help individuals with autism to realize their full potential as members of our communities. Today, we are focusing our efforts on providing services to aid families facing the challenges of providing lifetime care for their autistic children from first diagnosis through adulthood.
* The ``Expanding the Promise for Individuals with Autism Act of 2007,'' which was earlier introduced in the Senate and which we introduced this week in the House, is comprehensive legislation which authorizes approximately $350 million over 5 years to provide treatments and services across the lifespan. It is incumbent upon us to act now to pass this legislation that will facilitate the provision of treatments and services for autistic individuals throughout their lives. As provided for in this legislation, assistance needs to be largely community-based and needs to address early intervention, education, employment, transportation, housing, health, and recreation.
* Also, very importantly, the mechanisms authorized in this legislation are designed to provide treatments and services effectively and efficiently. Those mechanisms include a broad-based Task Force to evaluate evidence-based treatments and services, demonstration grants to enable states to provide evidence-based treatments and services, one-time planning grants and follow-on demonstration grants for states to provide services to adults, and supplemental grants to University Centers of Excellence in Developmental Disabilities Research, Education, and Services to allow the centers to train professionals who treat or serve individuals with autism, as well as the creation of four new University Centers of Excellence. To complement and further enhance the grant programs established under this Act, this legislation also provides assistance to a national nonprofit organization for establishment of a national technical assistance center and provides assistance for protection and advocacy systems.
* Additionally, to fill an information gap important to almost all affected families, service providers, and government organizations, the legislation calls for the Government Accountability Office to conduct a study and release a report on the ways in which autism treatments and services are currently financed, including policies for public and private health insurance.
* This is truly bipartisan, bicameral legislation, and I am gratified that Representatives ELIOT ENGEL of New York and CHIP PICKERING of Mississippi joined Representative DOYLE and myself in introducing this legislation. We are all most appreciative that critically acclaimed actor and star of the ``West Wing'' Bradley Whitford, co-founder of Cure Autism Now and board member of Autism Speaks Jonathan Shestack, and President of the Autism Society of America Lee Grossman joined us this week in announcing the introduction of the EPIAA. Their support, along with that of other advocates for individuals with autism, will be critical as this legislation advances in the House and Senate.
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