Smith 2011 Autism Bill Signed into Law
Cong. Smith talks about passage of HR 2005 with Bobbie and Billy Gallagher of Brick, NJ, parents of two autistic children. |
Comprehensive legislation authored by Congressman Chris Smith (NJ-04) reauthorizing federal autism research programs for the next three years was approved by the Senate late last night.
The bill— H.R. 2005, “The Combating Autism Reauthorization Act”—authorizes $693 million through 2014 to fund research into causes and treatment of autism and other developmental disabilities.
According to Smith, the legislation will authorize for each fiscal year:
- $22 million for the Developmental Disabilities Surveillance and Research Program;
- $48 million for Autism Education, Early Detection, and Intervention; and
- $161 million for hundreds of Research Grants at the National Institutes of Health (NIH), and for the Interagency Autism Coordinating Committee.
The CDC estimates that one out of every 110 children in the United States has an autism spectrum disorder (ASD).
Smith meets with NJ families and advocates for autism research Sept. 29. L-R are Debbie Charette of AutismNJ; Liza Gundell of Autism Family Services; Linda Meyer, of AutismNJ; Chris Weitzen; Smith; and Alanna and Bobbie Gallagher. In rear are Gary Weitzen of POAC and Billy Gallagher. |
Although Smith’s bill was passed unanimously by the House of Representatives on Sept. 20, and then “hotlined” by Republican Sen. Mitch McConnell in the Senate, Smith needed to spend the last seven days working the phones to overcome some resistance by some Senators who were at first reluctant to release the bill.
Cong. Smith is joined by autism leaders marking the House passage of his autism bill. From the left are George Jesien, Assn. of Universities Centers on Disabilities Exec. Director; Scott Badesch, Autism Society President; Peter Bell, Autism Speaks Vice President; Rep. Mike Doyle (PA-14); and, Smith. |
Introduction
In 1998, U.S. Rep. Chris Smith was contacted by Bobby and Billie Gallagher of Brick, NJ about their concerns that there was an elevated level of autism cases in their community.
The concerns of the Gallaghers—parents of two autistic children themselves—lead Rep. Smith to request that the Federal Agency for Toxic Substances and Disease Registry (ATSDR) 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 autism and other autism spectrum disorders (ASDs) were found in Brick Township, relative to rates from previously published studies.
We have now come to learn that the high rate of ASDs in Brick Township was not an isolated incident—it was a window to a nationwide phenomenon.
On February 8, 2007, the CDC released groundbreaking data documenting the high prevalance of ASDs 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 an ASD, as classified by the CDC (see below).
The numbers are even more shocking when you examine the results from New Jersey. 1 in every 94 New Jersey children analyzed in the recent federally-funded study has an ASD. Based on that 2002 data, the prevelance rate of ASDs for boys in New Jersey is 1 in every 60.
While the numbers are profound, it is the reality of the lives behind the numbers which call for our compassion, dedication and legislative action. It is for just this reason that Rep. Smith—co-founder and co-chair of the Congressional Autism Caucus, also known as the Congressional Coalition for Autism Research & Education (C.A.R.E.)—has actively worked throughout his Congressional career to raise autism research funding by nearly 10 times and author policies to aggressively promote research, treatment and support programs to help autistic individuals and their families.
What is autism and how does it affect children and their families?
Autism (also termed autistic disorder or classical autism) is the most common of the ASDs. Other ASDs, as classified by the National Institute of Health’s National Institute of Neurological Disorders and Stroke, include: pervasive developmental disorder - not otherwise specified (PDD-NOS), Asperger syndrome, Rett syndrome & childhood disintegrative disorder. These five disorders make up the category “Pervasive Developmental Disorders” in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR). Rett syndrome and CDD are rare disorders and are not always included with the ASDs. (CDC prevalence studies cited above include data for autistic disorder, Asperger disorder, and PDD-NOS).
Autism is a complex developmental disability that affects the normal functioning of the brain, which results in developmental problems that hold back an afflicted individual’s ability to interact socially and limits the individual’s communication skills. Autistic children often are uninterested in their surroundings, may be unresponsive to others, apply their energy on repetitive, atypical behaviors such as rocking or twirling or show self-abusive behaviors such as biting or head-banging.
ASDs occur in all racial, ethnic, and socioeconomic groups. Boys are four times more likely to be afflicted with an ASD than girls.
Autism and other ASDs are life-long afflictions that usually begin before age 3, and as such, require a lifetime of special care. Families with a child with an ASD become consumed with the considerable challenges of identifying appropriate biomedical and psychosocial treatments, schooling and other need support systems for their autistic child—and eventually for an autistic adult.
The Congressional Coalition for Autism Research and Education (C.A.R.E.)
Founded and co-chaired by U.S. Representative Chris Smith (R-NJ) and U.S. Representative Mike Doyle (D-PA) in 2001, the Congressional Autism Caucus, also known as the Congressional Coalition for Autism Research & Education (C.A.R.E.), currently includes over 160 members of Congress.
C.A.R.E. formed on January 10, 2001 is the first organization on Capitol Hill to call national attention to autism and the first Congressional Member Organization (CMO) to focus its efforts on autism spectrum disorders.
The goals of the bipartisan Coalition for Autism Research and Education include, but are not limited to:
- Increasing 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 regarding autism;
- Serve as a forum where autism-related policy issues can be exchanged, debated and discussed;
- Promote all means to eas the burdens of families and loved ones affected by autism.
- Since its inception, Reps. Smith and Doyle have used the caucus as a vehicle to aggressively direct more federal attention and funding to autism research and treatment programs.
Highlights of Rep. Smith’s efforts to promote autism research and awareness
As a leading proponent of autism research in Congress, Rep. Smith has pushed for significant increases in funding for autism treatment, research and awareness programs by nearly 10 times the amount it was in the mid-1990’s. In 1995, NIH invested about $10.5 million into autism research. The estimated budget for autism research in FY06 is nearly 10 times that amount - $108 million. At the Centers for Disease Control (CDC), autism funding has increased from $287,000 in 1995 to an estimated $15.1 million in 2006.
Along with working to increase funding for autism research and treatment, Rep. Smith has worked at length to pass legislation that will give the federal government a larger role in their efforts to identify the causes, symptoms and treatments for autism and other ASDs.
Rep. Smith authored a provision in Title I of the Children’s Health Act (PL 106-310) to create the Centers of Excellence in Autism and Pervasive Developmental Disabilities Epidemiology. This provision of the law established not less than three regional centers of excellence to collect and analyze information on incidences and causes of autism and related developmental disabilities. It was in conjunction with these authorities that the groundbreaking CDC data released earlier this year—the most comprehensive to date—was collected.
Most recently, in the 109th Congress, Rep. Smith authored a provision that was included in the Fiscal Year 2007 Department of Defense (DoD) Appropriations Bill (P.L. 109-289) that allocates $7.5 million into an Army research account for the purpose of improving treatment and intervention of children with autism. Research directed by the Army program will not only help the approximately 12,000 military children currently affected by autism, but will also benefit the general autism population as new findings and techniques will be shared with the medical, educational, healthcare and service professionals who serve the needs of the autism community both within the DoD and beyond.
Moving forward
In recent years, the federal government has begun to move more aggressively to address autism and ASD-related issues. In December 2006, Congress passed the historic “Combating Autism Act of 2005” (P.L. 109-318). This comprehensive law requires the Director of the National Institutes of Health (NIH) to expand, intensify and coordinate autism-related research and to conduct an agency-wide study of research centers of excellence. It also facilitates the creation of state-level agencies to serve as clearinghouses for public information and authorizes programs to improve early screening, diagnosis, intervention and treatment for autism.
The programs authorized in the “Combating Autism Act of 2005” must be fully funded. It is imperative that these programs are not shortchanged.
Since autism and other ASDs are life-long afflictions, we must also increase our efforts to aid families facing the challenge of providing lifetime care for their autistic children. Educators and school districts need support too, as autistic children require a very specialized curriculum and teachers with a firm understanding of the unique behaviors of autistic children.
To that end, Rep. Smith recently signed on as the lead Republican co-sponsor of C.A.R.E. Co-Chairman Mike Doyle’s legislation, the “Expanding the Promise for Individuals with Autism Act” (EPIAA) (H.R. 1881). This important bill authorizes $350 million worth of additional treatment and support resources, increasing access to effective therapies and essential support services for people with autism and their families.
Among its provisions, EPIAA would create a task force to evaluate currently available therapies and services and recommend ways to expand access to effective treatments and services across the nation; increase support for institutions that train professionals who treat or serve individuals with autism; establish grant programs to enable states to provide appropriate services to adults with autism; increase access to services following diagnosis of an autism spectrum disorder (ASD); and improves protection and advocacy services for individuals with autism spectrum disorders.
Swift passage of EPIAA would build on the successes of the “Combating Autism Act of 2005” and would certainly help families plan for the lifelong challenges of an autistic child. However, even with such a one-two punch, there are a number of unresolved questions about autism that remain unanswered. For instance, the causes and triggers for autism remain a mystery. In order to solve this puzzle, a robust research campaign—including a significant study into possible environmental triggers—must be conducted to increase our knowledge of autism so we can effectuate successful treatments.
Since children with an autism spectrum disorder who receive intensive and appropriate educational services often make very significant functional improvements, Rep. Smith has also introduced legislation to provide a refundable tax credit—up to $10,000 per teacher per year—for education and training expenses relating to autism spectrum disorders to increase the number of teachers with such expertise.
These and other challenges pertaining to autism will not be solved overnight. However, with autism prevalence rates reaching epidemic numbers, we cannot sit idle and allow another generation to be silenced by autism.
Additional Resources
Fact Sheet: Autism
"New Data Compels Action on Autism," by U.S. Rep. Chris Smith, Trenton Times, 02/19/2007
Rep. Smith's Floor Statement in Support of the "Combating Autism Act" (S. 843)
CDC’s “Learn the Signs, Act Early” Educational Campaign Website
CDC’s Autism Information Center
Autism Society of America
Austism Speaks
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