Mental Health First Act of 2013

I thank the chairman for yielding and thank him for his strong support, along with Chairman Fred Upton, former Chairman Henry Waxman, and so many others--Mike Doyle, my good friend and colleague, who together, since 2000, headed up the Coalition for Autism Research and Education. We have done everything bipartisan. We have 91 members in the coalition right now.

I would also like to thank the staff, who have helped us move this bill and negotiate text, including Gary Andres, Cheryl Jaeger, Brenda Destro, Jean Roehrenbeck, Katie Novaria, Cate Benedetti, and, of course, Neil Bradley, and so many others who have been so critical to this legislation.

Mr. Speaker, previous autism law, including the Combating Autism Reauthorization Act of 2011, made critical investments--continued by this bill--that are working to determine the causes of autism spectrum disorder, identify autistic children as early as possible to begin treatment, raise critical awareness, and develop new therapies and effective services.

The latest prevalence data from the Centers for Disease Control and Prevention, Mr. Speaker, is shocking. One in every 68 American children are on the autism spectrum, a tenfold increase over the last 40 years. Boys on the spectrum outnumber girls 5 to 1.

In my home State of New Jersey, one in every 45 children has ASD, the highest rate in the CDC study.

I would note parenthetically, Mr. Speaker, I have chaired two congressional hearings on global autism, and this developmental disability is everywhere--one conservative estimate, 67 million worldwide.

Looking back, Mr. Speaker, it was two dedicated parents from New Jersey who helped launch the comprehensive Federal policy we seek to reauthorize today.

Almost 17 years ago, September 1997, Bobbie and Billy Gallagher of Brick, New Jersey, and parents of two small autistic children, walked into my Ocean County office looking for help.

They believed Brick had a disproportionate number of students with autism and wanted action, especially for their son Austin and daughter Alana, so I invited CDC and other Federal agencies to Brick for an investigation, only to learn that prevalence rates were high not only in Brick, but in nearby communities as well.

Believing we had a serious spike in prevalence, I introduced the ASSURE Act, and that was incorporated as title I of the Children's Health Act of 2000.

Mr. Speaker, much progress has been made since. Today, the evidence suggests there is no single cause of autism or type. Genetic risk, coupled with environmental factors, including advanced parental age, low birth weight, and prematurity--among other factors--may be triggers.

Signs of autism in a child usually manifest between 12-18 months, some as early as 6 months, while some regress after the age of 2, yet transformative early intervention continues to lag.

According to the IACC:

The clinical reality is that, currently, only about 20

percent of children with ASD are being identified early (by 3

years of age).

That, Members of the House, is not good, and it has got to change. The research clearly shows that early diagnosis means early intervention and much better outcomes.

The most recent IACC strategic plan--and I encourage Members to read it. It is a textbook on how the Federal Government should do anything when it deals with research. They have pointed out that:

During the past few years, there has been a major

revolution in ASD genetics research.

Research on the potential relationship between the immune

system and ASD has grown considerably, resulting in ``major

breakthroughs.''

They go on to say:

Much progress has been made in understanding the prevalence

and biology of conditions that commonly co-occur with ASD,

including epilepsy, sleep disorders, GI disturbances,

attention deficit hyperactivity disorder, and other

psychiatric comorbidities.

They also point out:

Particularly intriguing are the results of prenatal vitamin

intake through supplements and diet, showing a 40 percent

reduction in risk of ASD with prenatal vitamin supplements

taken in the 3 months before or during the first month of

pregnancy.

Daily folic acid is also highly recommended.

Mr. Speaker, there is another issue that this bill seeks to address. Every year, 50,000 young people on the autism spectrum matriculate to adulthood and are in the process of losing services.

Jonathan Kratchman, a 16-year-old with Asperger's from New Jersey, was the keynote speaker at a Dare to Dream conference at Mercer County Community College last year. He stated:

I know I can be a great contributor to society when I

graduate. However, I need continuing support to get there.

Mr. Kratchman said:

If you take your high school diploma at age 18, you

automatically lose services from your school district.

Both individuals with autism--like Jonathan--and their parents find themselves confronted with almost unimaginable challenges, including loss of school, housing, and then they have job needs.

We are in the midst of a huge yet largely invisible crisis that begs serious focus and remedies.

The Autism CARES Act tasks multiple Federal agencies to comprehensively study and report back to Congress on the special needs of autistic young adults and transitioning youth.

Additionally, Chairman Upton and Chairman Pitts are in the process of requesting a comprehensive aging-out GAO report that will include key stakeholder involvement.

Passage of this bill, Mr. Speaker, is an important investment in a very important special group of people who, along with their families, caregivers, and friends, face seemingly endless challenges and struggles.

I strongly urge Members to support this legislation.

Mr. Speaker, I rise today to urge passage of H.R. 4631, the Autism Collaboration, Accountability, Research, Education and Support Act of 2014--Autism CARES ACT of 2014.

Mr. Speaker, previous autism law including the Combatting Autism Act of 2011 made critical investments--continued by this bill--that are working to determine the causes of autism spectrum disorder (ASD), identify autistic children as early as possible to begin treatment, raise critical awareness and develop new therapies and effective services.

According to the National Institutes of Health (NIH), ``ASD is a range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior. Autistic disorder, sometimes called autism or classical ASD, is the most severe form of ASD, while other conditions along the spectrum include a milder form known as Asperger syndrome . . .''

The latest prevalence data from the Centers for Disease Control and Prevention (CDC) is shocking: 1 in every 68 American children are on the autism spectrum--a tenfold increase over the last 40 years. Boys on the autism spectrum outnumber girls 5 to 1.

In my home state of New Jersey, 1 in every 45 children has ASD, the highest rate in the CDC study.

I've chaired two congressional hearings on global autism--and this developmental disability is everywhere. One conservative estimate: 67 million worldwide.

Looking back, it was two dedicated parents from New Jersey who helped launch the comprehensive federal policy we seek to reauthorize today.

Almost 17 years ago--September 13, 1997--Bobbie and Billy Gallagher of Brick, New Jersey and parents of two small children with autism, walked into my Ocean County district office looking for help. They believed Brick had a disproportionate number of students with autism and wanted action especially for their son Austin and daughter Alana. So I invited CDC and other federal agencies to Brick for an investigation only to learn that prevalence rates were high not only in Brick but in nearby communities as well. Believing we had a serious spike in the prevalence of autism, I introduced H.R. 274--the Autism Statistics, Surveillance, Research and Epidemiology Act (ASSURE) which was enacted as Title 1 of the Children Health Act of 2000.

Much progress has been made since. Today, the evidence suggests that there is no single cause or type of autism. Genetic risk coupled with environmental factors including advanced parental age, low birth weight and prematurity among other factors may be triggers. Signs of autism in a child usually manifest between 12-18 months--some as early as 6 months--while some ``regress'' after 2.

Yet, transformative early intervention continues to lag. According to the Interagency Autism Coordinating Committee (IACC): ``The clinical reality is that currently only about 20 percent of children with ASD are being identified early (by 3 years of age)'' and that members of the House is not good and has got to change. Early diagnosis means early intervention and better outcomes. IACC says ``More needs to be done to raise awareness in the practitioner community of the current capabilities and benefits of early, repeated screenings, early diagnosis, and early intervention.''

Research on autism is showing tremendous promise. The most recent IACC strategic plan--which is reauthorized for five years by Section 5--is filled with insight and actionable information:

``During the past few years there has been a major revolution in ASD genetics research. Using the newest molecular and epidemiological methods, recent data continues to strongly support the role of genes in ASD, and the understanding of this role has been greatly refined.''

``In infants at high genetic risk for ASD due to having an older sibling with autism, symptoms of autism begin to emerge as young as 6 months of age in those who later develop ASD. These new findings suggest that it may someday be possible to screen for children at risk for ASD before the emergence of the full symptoms of autism and early enough to facilitate even more effective intervention.''

``Research on the potential relationship between the immune system and ASD has grown considerably over the past 2 years, resulting in several major breakthroughs. In the realm of basic developmental research, immune cells and immune signaling molecules have been identified as essential for establishing stable connections between neurons during early brain development.''

``Much progress has been made in understanding the prevalence and biology of conditions that commonly co-occur with ASD, including epilepsy, sleep disorders, gastrointestinal (GI) disturbances, attention deficit hyperactivity disorder, and other psychiatric comorbidities.''

``The time around conception and during pregnancy are likely the most important time windows of heightened vulnerability for the development of the brain with supporting evidence from early reports linking autism symptoms to maternal ingestion of drugs.''

``Particularly intriguing are the results of prenatal vitamin intake through supplements and diet, showing a 40 percent reduction in risk of ASD with prenatal vitamin supplements taken in the 3 months before or during the first month of pregnancy.''

``A trend of decreasing ASD risk as mothers consumed greater daily folic acid intake from foods, vitamins, and supplements in the first month of pregnancy was also reported.''

Over the past 5 years, progress has been made toward developing tools and practices for more effective screening and early diagnosis--and I am pleased that the Committee reports includes language that will ensure federal agencies pay particular attention to the need to focus on early diagnosis and intervention in children.

While biological differences in individuals with ASD were hypothesized earlier, there is now ``data demonstrating specific changes in the genome and epigenome, gene expression, cell structure and function, brain connectivity, and behavior that have been linked to the causes and underlying biology of ASD.''

I mentioned Bobbie and Billy Gallagher's children earlier because they represent a generation of young men and women who are aging out-- both are now over 21 years old, which means far too much of their support system no longer exists.

Mr. Speaker, every year 50,000 young people on the autism spectrum matriculate to adulthood.

Jonathan Kratchman, a 16-year-old with Asperger's from New Jersey, was the keynote speaker at a ``Dare To Dream Conference'' at Mercer County Community College last year, where he stated: ``I know I can be a great contributor to society when I graduate. However, I need continuing support to get there... Here is a fast fact. If you take your high school diploma at age 18, you automatically lose services from your school district.''

Both individuals with autism, like Jonathan, and their parents find themselves confronted with almost unimaginable challenges including loss of school instruction, housing and job needs. We are in the midst of huge yet largely invisible crisis that begs serious focus and remedies.

The Autism CARES Act tasks multiple federal agencies to comprehensively study and report back to Congress on the special needs of autistic young adults and transitioning youth.

While studies show that young adults with autism appear to fare worse in employment outcomes--including when compared to young adults with other types of disabilities--there is evidence that with specialized support programs employment is feasible even among individuals with higher support needs.

I'm planning a congressional hearing next month in my global health committee on employers like software giant SAP which has actively recruited and hired over 700 young adults on the autism spectrum and recently told me these diligent young employees are extraordinarily effective workers.

Well planned transition programs will not only assist families and help shape a brighter future for individuals with ASD, they are also a smart investment that will reduce government spending in the long-term. The University Centers for Excellence in Developmental Disabilities recently estimated that: ``Diverting just one young person into living- wage employment could save an average of $150,000 in SSI benefits over their lifetime. According to the Social Security Administration, transitioning just one half of one percent of current SSDI and SSI beneficiaries from benefits to self-sustaining employment would save $3.5 billion in cash benefits over the work-life of those individuals.''

IACC recently concluded that since 2009, the adult services research field has made some important advances, including gathering of new data on the services available across the states, information about how adults are interacting with the service system, and data on the service needs of adults on the autism spectrum.

But in light of the severity of the aging out crisis, we must do more and do it fast and ensure we are providing a comprehensive and thorough review of available services--and those that need to be established. Additionally, Chairman Upton and Chairman Pitts are in the process of requesting a comprehensive autism aging-out GAO report that will include key stakeholder involvement.

We are making real progress, but we still don't have all the answers.

Specifically, the Autism Cares Act of 2014 authorizes funding for each of fiscal years 2015 through 2019 at $22 million for the CDC, $48 million for the Health Resources and Services Administration (HRSA) and $190 million for the National Institutes of Health (NIH) and IACC activities--for a total of $1.3 billion.

I especially want to thank Majority Leader Eric Cantor, Chairman Fred Upton and former Chairman Henry Waxman as well as Chairman Joe Pitts-- all strong and committed friends of persons with autism--for their critical support of this legislation.

Special thanks to my friend Mike Doyle. Since 2000, Mike and I have co-chaired the 91 member congressional autism caucus--the Coalition on Autism Research and Education (CARE).

I am very grateful to the many excellent, professional staff who played key roles in helping move the bill and negotiate text including Gary Andres, Cheryl Jaeger, Brenda Destro, Jean Roehrenbeck, Katie Novaria, Cate Benedetti and of course Neil Bradley.

I also want to express my deep appreciation for the extraordinary contributions made by Autism Speaks, the Autism Society, the Association of University Centers on Disabilities and the American Academy of Pediatrics--all of whom strongly endorse H.R. 4631.

Mr. Speaker, passage of this bill today is an investment in a very important group of people who, along with their families, caregivers and friends, face seemingly endless challenges and struggles. I urge support.

Thank you, Mr. Green, for yielding and for your support of the Autism CARES Act.

First off, I want to thank my good friend and Autism Caucus cochair Chris Smith for his leadership and work on this critical legislation over the past 11 years. It has been a real pleasure and a labor of love to work with Chris on these issues. He is truly a champion in the autism community. I look forward to continuing that great working relationship with him.

Mr. Chairman, it seems that every time new data is released on autism spectrum disorders, the numbers become more and more troubling. In fact, the Centers for Disease Control's most recent data show a continued rise in autism prevalence rates: 1 in every 68 American children. That is 1 in 189 girls and 1 in 42 boys.

These are staggering numbers with serious implications for many aspects of American life. That is why passage of the Autism CARES Act today is so important: to continue research into the causes of autism, to educate health care providers and the public, to improve early diagnosis and intervention, to identify effective treatments, and to evaluate the types of services available to young adults with ASD. We can and must do better for the millions of Americans living with ASD and their families.

Many Federal autism programs were first authorized by the Combating Autism Act of 2006, which has made a huge difference in the lives of autistic Americans and their families. Since its inception, Congress has reauthorized these Federal autism programs twice. Without new legislation to reauthorize them, the funding for these important programs will expire on September 30 of this year.

We have made tremendous advances in understanding autism spectrum disorders, but this progress will be lost if Congress allows these programs to expire. This is why it is so important that Congress pass this commonsense, bipartisan, bicameral legislation like the bill that is before us today.

The autism programs this legislation would reauthorize are vitally important to many families and individuals across the country. Early diagnosis and intervention can make a huge difference in an autistic individual's life and can have a dramatic impact on the individual's family and community as well.

With the prevalence of autism spectrum disorders much higher than we thought just a few years ago, inaction is simply not an option.

I urge my colleagues to support the Autism CARES legislation.

Mr. Speaker, I move to suspend the rules and pass the bill (H.R. 4631) to reauthorize certain provisions of the Public Health Service Act relating to autism, and for other purposes, as amended.

Mr. Speaker, I ask unanimous consent that all Members may have 5 legislative days in which to revise and extend their remarks and insert extraneous materials into the Record on the bill.

Mr. Speaker, I yield myself such time as I may consume.

I rise today, Mr. Speaker, in support of H.R. 4631, the Autism Collaboration, Accountability, Research, Education, and Support-- CARES--Act of 2014, introduced by Congressman Chris Smith of New Jersey.

Autism CARES demonstrates our continued effort to address the needs of children and adults with autism spectrum disorder, ASD.

Thanks to the monitoring done by the Centers for Disease Control and Prevention, CDC, we know that as many as 1 in 68 children have ASD.

With recent studies showing that ASD can be detected in the first 6 months of life, the screening and diagnosis funded in the bill will mean early diagnosis and improved health and behavioral outcomes.

Many of these children are now transitioning into adulthood and will need community-based services to replace those provided by the schools. As a part of this bill, HHS will be required to study their needs and available services to identify gaps and make their transition seamless and productive.

The bill would also fund important research at the National Institutes of Health to understand and treat ASD and the operation of the Interagency Autism Coordinating Committee.

I urge my colleagues to support this important legislation, and I reserve the balance of my time.

Mr. Speaker, at this time, I yield 5 minutes to the gentleman from New Jersey, Congressman Chris Smith, the distinguished prime sponsor of the legislation, who has really provided the leadership on this issue.

I yield an additional minute to the gentleman.

Mr. Speaker, at this time I yield 1 minute to the distinguished gentleman from Florida (Mr. Bilirakis), a valued member of the Health Subcommittee.

Mr. Speaker, I yield 1 minute to the distinguished gentleman from Illinois (Mr. Roskam), one of our distinguished leaders.

Mr. Speaker, I am very pleased to support this very important bipartisan legislation. I urge all Members to do so, and I yield back the balance of my time.

Mr. Speaker, I want to thank my good friend from Texas (Mr. Gene Green) for yielding me the time. I want to thank my good friend, Mr. Smith from New Jersey. I have so much respect for his hard work in doing this. Anyone who knows Chris knows that when he wants something done, he is tenacious. Mike Doyle has been his really good partner. We all take pride in this legislation.

I rise to support the Autism Collaboration, Accountability, Research, Education, and Support Act, or the Autism CARES Act. I am pleased that we have an opportunity to pass this today.

Autism, as my colleagues have said, affects more than 2 million individuals and their families across our country. The rate of diagnosis has climbed dramatically in recent years. Today, 1 out of every 68 American children is diagnosed with autism spectrum disorder by the age of 8. That is really shocking. These individuals and their families are counting on us to pass this bill.

The Autism CARES Act will extend and strengthen the efforts we established under the Combating Autism Act of 2006 and the Combating Autism Reauthorization Act of 2011. I was proud to support both of these bills on the Foreign Affairs Committee, the Energy and Commerce Committee, and the full House. I am pleased to see that this legislation will give our autism programs the continued support they deserve.

With this bill, we will extend Federal autism programs for another 5 years, including vital autism research and prevalence monitoring, as well as training for medical professionals. This bill will also provide valuable updates to the law. It will increase coordination across Federal agencies and improve our understanding of the issues youth and young adults face as they transition out of school-based services.

These changes will advance our understanding of autism spectrum disorder and allow us to better assist the millions of Americans it impacts.

The programs provided for this in bill have traditionally enjoyed strong bipartisan support in the Energy and Commerce Committee. It enjoyed strong bipartisan support, as I guess it will as well here, because this is a strong bipartisan issue.

So I urge my colleagues to continue this commitment by voting for the Autism CARES Act today.

Mr. Speaker, I rise in support of H.R. 4631, the Autism CARES Act, which reauthorizes the Combating Autism Reauthorization Act. I want to commend my colleague, Representative Chris Smith, for bringing this measure forward.

Our understanding of autism remains an unsolved puzzle. More children than ever are being diagnosed with communication and behavior disorders that lead to a diagnosis of autism.

Though our understanding of autism is limited, what we do know is that autism affects too many children, strains families, costs too much, and puts those it afflicts at an educational, professional, and social disadvantage compared to their peers.

Families with autistic children do everything they can to help their kids maximize their God-given abilities whatever those may be. But it's not always easy especially in a world where many don't understand the unique challenges autism presents. Helping these families better navigate this treacherous world would make a huge difference.

The Autism CARES Act provides federal support for critical autism research by reauthorizing research programs at the National Institute of Health, Centers for Disease Control and Prevention and the Department of Health and Human Services. The bill will help better coordinate federal autism research and ensure more focused efforts to maximize the benefits of the resources we invest in such research.

This bill also will begin efforts to determine how best to meet the needs of young adults with autism as they face the new challenges that come with being an adult.

These investments are extremely important because autism imposes tremendous emotional and financial costs on families and economic impact on the health care system. The investments called for by this bill will pale in comparison to the personal and financial benefits they will yield in the future.

Families struggling with autism face challenges many of us can't imagine. They need and deserve our help. It is time to commit ourselves to solving this puzzle today so autism can be prevented, treated, and cured tomorrow.

I urge all of my colleagues to join me in supporting this bipartisan measure.