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Public Statements

Combating Autism Reauthorization Act of 2011

Floor Speech

By:
Date:
Location: Washington, DC

Mr. SMITH of New Jersey. I thank my good friend, the chair, Mr. Pitts, for yielding and for his leadership on all issues relating to health, and in particular on autism. I do want to thank Speaker Boehner and Majority Leader Cantor for bringing the bill to the floor. Without them, it wouldn't be on the floor today. And I also thank Energy and Commerce Committee Chairman Fred Upton. And of course, again, Chairman Pitts.

And I want to thank my good friend Mr. Doyle. We have worked on this for well over a decade. We formed the Autism Caucus. It has over 100 members. It is totally bipartisan. It has been a pleasure to work with him, and I thank him for his leadership as well.

Mr. Speaker, I do rise in support of this bill, H.R. 2005, the Combating Autism Reauthorization Act of 2011. This legislation is critically important to continue without interruption the progress that has been achieved to date in understanding autism and in developing interventions that will have the greatest impact in helping individuals affected by autism or other developmental disabilities.

When I first got elected to Congress in 1980, the autism community accepted that autism prevalence rates in the United States were something on the order of 3 in 10,000. Today it is estimated to be 1 in 110, and in some places like New Jersey, the data suggests 1 in 94, for a total of about 1.5 million individuals in the U.S. who are suffering from autism.

On May 31 of this year, I chaired a hearing as chairman of the Africa, Global Health, and Human Rights Subcommittee, a hearing entitled, ``Global Autism: A Developmental Disability Pandemic.'' My committee received testimony that some 67 million people worldwide suffer from ASD in the world. There are tens of millions in Africa, according to the World Health Organization. It is an epidemic, and this legislation, the Combating Autism Act, is a very responsible and, I would suggest, modest effort to combat this pandemic that's occurring.

In 1998, Mr. Speaker, the wonderful parents of two autistic children in my district, Bobby and Billy Gallagher, asked me to look into what appeared at the time to be an autism prevalence spike in Brick Township, New Jersey. I invited CDC and the Agency for Toxic Substances and Disease Registry, ATSDR, and others to investigate. Not only did their probe show what appeared to be elevated numbers of children with the disorder in Brick Township, but the data strongly suggested a much wider problem than anticipated in other parts of my State because they weren't doing comparisons, and the data calls produced information which said, we have a problem not just in Brick, but elsewhere.

In direct response to that, in 1999 I introduced the Autism Statistics, Surveillance, Research, and Epidemiology, or ASSURE, Act to establish centers of excellence and create a Federal advisory committee which became Title I of the Children's Health Act of 2000. I always want to thank Chairman Bilirakis for including it in his bill. It made all the difference in the world. Five years later, the initiative was reauthorized and expanded in the Combating Autism Act, the law we respectfully ask Members to renew today.

According to the NIH, autism spectrum disorder--and just for the record, again, autism is defined as impaired verbal or nonverbal communication skills and social interactions, and restricted, repetitive, and stereotyped patterns of behavior ranging in impact from mild to significantly disabling--it ought to be noted that the Combating Autism Act of 2011 will continue the success of the CAA of 2006 by authorizing funding for programs at NIH, CDC, and HRSA for 3 additional years.

I would point out, and this is important, autism spectrum disorder is very expensive and, again, efforts made to mitigate its prevalence and to treat with early intervention those who show or manifest signs of it are not only humane, and that should be our driving force, but they are also very cost effective. It's estimated that ASD costs per year are between $35 billion and $90 billion dollars, with a ``b.'' So the costs are very, very large.

H.R. 2005, as my colleagues I know have said, would also reauthorize the Interagency Autism Coordinating Committee, or the IACC, a panel of government and public members tasked with coordinating all ASD-related activities within HHS, as well as developing and annually updating a strategic plan for ASD research in order to enhance the quality, efficacy, and applicability of research grants. In other words, let's spend the money wisely.

To avoid waste and duplication, the IACC has crafted three strategic research plans: one in 2009, one in 2010, and another for this year. For example, in 2009, the strategic plan included 40 research objectives, including development of new diagnostic tools, identification of genetic and environmental risk factors, and assessments of services for people with ASD in all ages in a community setting.

It should be noted that the aging-out issue is becoming increasingly a concern. What does a parent whose son or daughter or sons or daughters turn 21 and the full array of those services are no longer available? What do they do?

Recently I met with Chuck Colson's daughter, who wrote a book called ``Dancing with Max,'' a wonderful story of love between a mother and son. Her son now is aging out, and she is frightened by the prospect of what happens if she gets elderly and those services are not there. We need to be focusing on that.

The 2010 strategic plan had 32 new objectives, including health disparities in early diagnosis and treatment of co-concurring conditions, such as epilepsy, sleep, and gastrointestinal disorders. The 2011 strategic plan added another 16 objectives, including studies on the use and accessibility of alternative and augmentative communication tools for nonverbal individuals.

I just want to say to my colleagues, and I have much more that I will put into the Record of how important it is, but all these different agencies of government are surging to try to combat autism. We need to reauthorize this legislation. The CDC has its ``learn the signs, act early campaign.'' My friend, Mr. Butterfield, earlier mentioned the fact that minority communities have been left out or diagnoses are often not done in a timely way. That is absolutely true. And more needs to be done. The programs are in place. The policies are in place. We need to continue what is truly a very, very effective use of taxpayer dollars to help these autistic children.

There is also the problem, as the information has shown, that early detection is key to mitigating the impact of autism. But still, even with 10 years' experience educating doctors, parents, and educators, there is still about a 2-year lag when there's a detection of something is wrong with my son or daughter before that diagnosis is actually made. The earlier we start the intervention strategies, the greater chance that child will have a quality of life and a life where they can then achieve their goals and their dreams, but if we don't catch it early and begin taking action, very often, the life of that child is more seriously impaired.

This legislation, like I said, is a modest step, but a very crucial step. I want to thank all the organizations for the work that they have done--they have been tremendous--the NGOs that are in the community, Autism Speaks, the Autism Society, the AUCD, all of the groups, for the work that they have done in educating Members.

And again, thank you Chairman Pitts for bringing this bill to the floor, and to Eric Cantor for scheduling it and ensuring that we can act on this in a timely way, and again my good friend on the other side of the aisle, Mr. Doyle, for his leadership.

BREAK IN TRANSCRIPT

Mr. Speaker, I rise today in support of H.R. 2005, the Combating Autism Reauthorization Act of 2011. This legislation is critically important to continue without interruption the progress achieved to date in understanding autism and in developing interventions that will have the greatest impact in helping individuals affected by autism or another developmental disability.

When I first got elected to Congress in 1980, the community accepted that autism prevalence rates in the United States were 3 in 10,000. Today, it is estimated to be 1 in 110, and in some places like New Jersey, 1 in 94--for a total of 1.5 million individuals in the United States. On May 31 of this year, I chaired a hearing entitled, ``Global Autism: `A Developmental Disability Pandemic,' '' and my committee received testimony that some 67 million people suffer from ASD worldwide.

In 1998, the wonderful parents of two autistic children in my district, Bobbie and Billy Gallagher, asked me to look into what appeared to be an autism prevalence spike in Brick Township, New Jersey. I asked CDC and the Agency for Toxic Substances and Disease Registry (ATSDR) and others to investigate, and not only did their probe show what appeared to be elevated numbers of children with the disorder in Brick, but the data strongly suggested a much wider problem than anticipated in other parts of the State.

In 1999, I introduced the Autism Statistics, Surveillance, Research and Epidemiology (ASSURE) Act to establish centers of excellence and create a Federal advisory committee, which became Title I of the Children's Health Act of 2000.

Five years later, the initiative was reauthorized and expanded in the Combating Autism Act--the law we respectfully ask members to renew today.

According to the National Institutes of Health, Autism Spectrum Disorder (ASD) is ``characterized by impaired verbal and nonverbal communication skills and social interactions and restricted, repetitive and stereotyped patterns of behavior, ranging in impact from mild to significantly disabling.''

The total cost to society of ASD has been estimated from 35 to 90 billion dollars annually. The Harvard School of Public Health calculated that it can cost $3.2 million to take care of one autistic person over his or her lifetime. Looking at medical expenses alone, a CD study of employer-based health insurance showed that individuals with an ASD had average medical expenditures that exceeded those without an ASD by $4,100 to $6,200 per year.

A decade of research, surveillance, treatment and education has had a significant positive impact on the ASD affected person, as well as his or her family--who, as we all know, face huge financial and emotional challenges of their own.

The Combating Autism Reauthorization Act of 2011 will continue the success of the CAA of 2006 by authorizing funding for programs at NIH, CDC, and HRSA for three additional years. Total funding for the legislation will be at the fiscal year 2011 appropriated level of $231 million for each of fiscal years 2012, 2013, and 2014. The Reauthorization Act will authorize appropriations of $22 million for surveillance; $48 million for education, early detection, and intervention; and $161 million for NIH research and operation of the Interagency Autism Coordinating Committee.

This is not considered ``new'' money, but rather a straight-line reauthorization of total funds for the legislation, in compliance with the ``cut-go'' requirements of the 112th Congress. The Combating Autism Reauthorization Act also retains sunset and reporting provisions that ensure appropriate review and accountability.

H.R. 2005 reauthorizes the Interagency Autism Coordinating Committee (IACC)--a panel of government and public members, tasked with coordinating all ASD-related activities within HHS, as well as developing and annually updating a strategic plan for ASD research. In order to enhance the quality, efficacy and applicability of research grants and to avoid waste and duplication, the IACC has crafted 3 strategic research plans in 2009, 2010, and 2011.

For example, in 2009, the strategic plan included 40 research objectives, including the development of new diagnostic tools, identification of genetic and environmental risk factors, and assessments of services for people with ASD of all ages in a community setting.

The 2010 IACC strategic plan has 32 new objectives, including health disparities in early diagnosis and treatment of co-occurring conditions, such as epilepsy and sleep and gastrointestinal disorders.

And the 2011 strategic plan added another 16 objectives, including studies on the use and accessibility of alternative and augmentative communication (AAC) tools for nonverbal individuals.

The IACC also summarizes advances in ASD research identified as having the greatest impact on the field of autism, which has included the association between family history of autoimmune disease and ASD, genetic risk factors, racial disparities, and novel ways to diagnose ASD using speech patterns. Just for fiscal year 2010, NIH awarded 528 grants from baseline funding to pursue promising research related to autism.

This reauthorization bill also continues support of the critical surveillance and epidemiology programs that were established by the Children's Health Act and strengthened by the Combating Autism Act.

The Autism and Developmental Disabilities Network (ADDM) has published the most comprehensive and highest quality estimates to date of the prevalence of ASD in multiple areas of the U.S.

The Centers for Autism Developmental Disabilities Research and Epidemiology has implemented the Study to Explore Early Development (SEED), which is the largest study planned to date of the causes of autism, including genetic and environmental risk factors. The study has enrolled 2700 families and initial findings are due next year.

The CAA also focuses on programs in education, early detection and interventions that have already impacted the lives of hundreds of thousands of individuals with autism and other developmental disabilities and their families.

CDC's health communication campaign, ``Learn the Signs. Act Early,'' educates parents, health care professionals, and early childhood educators about the importance of monitoring a child's developmental milestones, seeking further evaluation where there is a concern, and seeking early intervention services as soon as possible.

The Maternal and Child Health Bureau of the Health Resources and Services Administration developed and implemented the Combating Autism Act Initiative, which is conducting research on and providing training to health professionals in the use of valid, reliable screening and diagnostic tools and in the provision of evidence-based interventions for children with ASD or another developmental disability.

As a result of increased awareness of the public, of educators, and of health care professionals, the median age for diagnosis of autism--which currently is about 4.5 years--appears to be on the decline. However, it is important to continue our efforts, as there is still on average a 2 year time gap from developmental concerns to actual diagnosis, research has demonstrated the positive impact of implementing behavioral intervention before age 3, and Applied Behavioral analysis has shown significant improvement for children as young as 18 months.

In summary, under the Children's Health Act and the Combating Autism Act, our scientific infrastructure for addressing autism and other developmental disorders has developed and we have made major advances in our understanding of ASD. For the first time, we have high quality data on prevalence and data to support analysis of causes of autism, and a clearer picture of promising paths and gaps in research. Health professionals have a level of knowledge for greatly improved diagnostics and interventions to provide meaningful medical and behavioral benefits. There is optimism that a sustained focus on genetic and environmental triggers will lead to efficacious treatments and prevention strategies. Importantly, the infrastructure and programs are in place to continue our progress.

I want to thank our Speaker Boehner and Majority Leader Cantor, as well as Energy and Commerce Chairman Upton, Health Subcommittee Chairman Pitts for the leadership that have shown in moving this legislation forward. I also would like to thank my friend and autism caucus co-chair, Congressman Mike Doyle, for his work in developing and supporting this legislation.


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