[Congressional Record Volume 165, Number 125 (Wednesday, July 24, 2019)]
[House]
[Pages H7303-H7308]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




AUTISM COLLABORATION, ACCOUNTABILITY, RESEARCH, EDUCATION, AND SUPPORT 
                              ACT OF 2019

  Mr. PALLONE. Mr. Speaker, I move to suspend the rules and pass the 
bill (H.R. 1058) to reauthorize certain provisions of the Public Health 
Service Act relating to autism, and for other purposes, as amended.
  The Clerk read the title of the bill.
  The text of the bill is as follows:

                               H.R. 1058

       Be it enacted by the Senate and House of Representatives of 
     the United States of America in Congress assembled,

     SECTION 1. SHORT TITLE.

       This Act may be cited as the ``Autism Collaboration, 
     Accountability, Research, Education, and Support Act of 
     2019'' or the ``Autism CARES Act of 2019''.

     SEC. 2. EXPANSION, INTENSIFICATION, AND COORDINATION OF 
                   ACTIVITIES OF THE NIH WITH RESPECT TO RESEARCH 
                   ON AUTISM SPECTRUM DISORDER.

       Section 409C of the Public Health Service Act (42 U.S.C. 
     284g) is amended--
       (1) in subsection (a)(1)--
       (A) in the first sentence, by striking ``and toxicology'' 
     and inserting ``toxicology, and interventions to maximize 
     outcomes for individuals with autism spectrum disorder''; and
       (B) by striking the second sentence and inserting the 
     following: ``Such research shall investigate the causes 
     (including possible environmental causes), diagnosis or 
     ruling out, early and ongoing detection, prevention, services 
     across the lifespan, supports, intervention, and treatment of 
     autism spectrum disorder, including dissemination and 
     implementation of clinical care, supports, interventions, and 
     treatments.'';
       (2) in subsection (b)--
       (A) in paragraph (2)--
       (i) in the second sentence, by striking ``cause'' and all 
     that follows through ``disorder'' and inserting ``causes, 
     diagnosis, early and ongoing detection, prevention, and 
     treatment of autism spectrum disorder across the lifespan''; 
     and
       (ii) in the third sentence, by striking ``neurobiology'' 
     and all that follows through the period and inserting 
     ``neurobiology, genetics, genomics, psychopharmacology, 
     developmental psychology, behavioral psychology, and clinical 
     psychology.''; and
       (B) in paragraph (3), by adding at the end the following:
       ``(D) Reducing disparities.--The Director may consider, as 
     appropriate, the extent to which a center can demonstrate 
     availability and access to clinical services for youth and 
     adults from diverse racial, ethnic, geographic, or linguistic 
     backgrounds in decisions about awarding grants to applicants 
     which meet the scientific criteria for funding under this 
     section.''.

     SEC. 3. PROGRAMS RELATING TO AUTISM.

       (a) Developmental Disabilities Surveillance and Research 
     Program.--Section 399AA of the Public Health Service Act (42 
     U.S.C. 280i) is amended--
       (1) in subsection (a)(1), by striking ``adults on autism 
     spectrum disorder'' and inserting ``adults with autism 
     spectrum disorder'';
       (2) in subsection (a)(2)--
       (A) by striking ``State and local public health officials'' 
     and inserting ``State, local, and Tribal public health 
     officials'';
       (B) by striking ``or other developmental disabilities'' and 
     inserting ``and other developmental disabilities'';
       (3) in subsection (a)(3), by striking ``a university, or 
     any other educational institution'' and inserting ``a 
     university, any other educational institution, an Indian 
     tribe, or a tribal organization'';
       (4) in subsection (b)(2)(A), by striking ``relevant State 
     and local public health officials, private sector 
     developmental disability researchers, and advocates for 
     individuals with developmental disabilities'' and inserting 
     ``State, local, and Tribal public health officials, private 
     sector developmental disability researchers, advocates for 
     individuals with autism spectrum disorder, and advocates for 
     individuals with other developmental disabilities'';
       (5) in subsection (d)--
       (A) by redesignating paragraphs (1) and (2) as paragraphs 
     (2) and (3), respectively; and
       (B) by inserting before paragraph (2), as so redesignated, 
     the following new paragraph:
       ``(1) Indian tribe; tribal organization.--The terms `Indian 
     tribe' and `tribal organization' have the meanings given such 
     terms in section 4 of the Indian Health Care Improvement 
     Act.''; and
       (6) in subsection (e), by striking ``2019'' and inserting 
     ``2024''.
       (b) Autism Education, Early Detection, and Intervention.--
     Section 399BB of the Public Health Service Act (42 U.S.C. 
     280i-1) is amended--
       (1) in subsection (a)(1)--
       (A) by striking ``individuals with autism spectrum disorder 
     or other developmental disabilities'' and inserting 
     ``individuals with autism spectrum disorder and other 
     developmental disabilities''; and
       (B) by striking ``children with autism spectrum disorder'' 
     and all that follows through ``disabilities;'' and inserting 
     ``individuals with

[[Page H7304]]

     autism spectrum disorder and other developmental disabilities 
     across their lifespan;'';
       (2) in subsection (b)--
       (A) in paragraph (2), by inserting ``individuals with'' 
     before ``autism spectrum disorder'';
       (B) by redesignating paragraphs (4) through (6) as 
     paragraphs (5) through (7), respectively; and
       (C) by inserting after paragraph (3) the following:
       ``(4) promote evidence-based screening techniques and 
     interventions for individuals with autism spectrum disorder 
     and other developmental disabilities across their 
     lifespan;'';
       (3) in subsection (c)--
       (A) in paragraph (1), in the matter preceding subparagraph 
     (A), by striking ``the needs of individuals with autism 
     spectrum disorder or other developmental disabilities and 
     their families'' and inserting ``the needs of individuals 
     with autism spectrum disorder and other developmental 
     disabilities across their lifespan and the needs of their 
     families''; and
       (B) in paragraph (2)--
       (i) in subparagraph (A)(ii), by striking ``caregivers of 
     individuals with an autism spectrum disorder'' and inserting 
     ``caregivers of individuals with autism spectrum disorder or 
     other developmental disabilities'';
       (ii) in subparagraph (B)(i)(II), by inserting ``autism 
     spectrum disorder and'' after ``individuals with''; and
       (iii) in subparagraph (B)(ii), by inserting ``autism 
     spectrum disorder and'' after ``individuals with'';
       (4) in subsection (e)--
       (A) in paragraph (1)--
       (i) in the matter preceding subparagraph (A), by inserting 
     ``across their lifespan'' before ``and ensure''; and
       (ii) in subparagraph (B)(iv), by inserting ``across their 
     lifespan'' after ``other developmental disabilities'';
       (B) by redesignating paragraphs (2) and (3) as paragraphs 
     (3) and (4), respectively; and
       (C) by inserting after paragraph (1) the following:
       ``(2) Developmental-behavioral pediatrician training 
     programs.--
       ``(A) In general.--In making awards under this subsection, 
     the Secretary may prioritize awards to applicants that are 
     developmental-behavioral pediatrician training programs 
     located in rural or underserved areas.
       ``(B) Definition of underserved area.--In this paragraph, 
     the term `underserved area' means--
       ``(i) a health professional shortage area (as defined in 
     section 332(a)(1)(A)); and
       ``(ii) an urban or rural area designated by the Secretary 
     as an area with a shortage of personal health services (as 
     described in section 330(b)(3)(A)).'';
       (5) in subsection (f), by inserting ``across the lifespan 
     of such individuals'' after ``other developmental 
     disabilities''; and
       (6) in subsection (g), by striking ``2019'' and inserting 
     ``2024''.
       (c) Interagency Autism Coordinating Committee.--Section 
     399CC of the Public Health Service Act (42 U.S.C. 280i-2) is 
     amended--
       (1) in subsection (b)--
       (A) in paragraph (2), by inserting ``across the lifespan of 
     such individuals'' before the semicolon; and
       (B) in paragraph (5), by inserting ``across the lifespan of 
     such individuals'' before ``and the families'';
       (2) in subsection (c)--
       (A) in paragraph (1)(D), by inserting ``, the Department of 
     Labor, the Department of Justice, the Department of Veterans 
     Affairs, the Department of Housing and Urban Development,'' 
     after ``Department of Education'';
       (B) in subparagraphs (A), (B), and (C) of paragraph (2), by 
     striking ``at least two such members'' each place it appears 
     and inserting ``at least three such members'';
       (C) in paragraph (3)(A), by striking ``one or more 
     additional 4-year terms'' and inserting ``one additional 4-
     year term''; and
       (3) in subsection (f), by striking ``2019'' and inserting 
     ``2024''.
       (d) Reports to Congress.--Section 399DD of the Public 
     Health Service Act (42 U.S.C. 280i-3) is amended--
       (1) in subsection (a)--
       (A) in paragraph (1), by striking ``Autism CARES Act of 
     2014'' and inserting ``Autism CARES Act of 2019''; and
       (B) in paragraph (2)--
       (i) in subparagraphs (A), (B), (D), and (E), by striking 
     ``Autism CARES Act of 2014'' each place it appears and 
     inserting ``Autism CARES Act of 2019'';
       (ii) in subparagraph (G), by striking ``age of the child'' 
     and inserting ``age of the individual'';
       (iii) in subparagraph (H), by striking ``; and'' and 
     inserting ``;'';
       (iv) in subparagraph (I), by striking the period and 
     inserting ``; and''; and
       (v) by adding at the end the following:
       ``(J) information on how States use home- and community-
     based services and other supports to ensure that individuals 
     with autism spectrum disorder and other developmental 
     disabilities are living, working, and participating in their 
     community.''; and
       (2) in subsection (b)--
       (A) in the heading, by striking ``Young Adults and 
     Transitioning Youth'' and inserting ``the Health and Well-
     Being of Individuals With Autism Spectrum Disorder Across 
     Their Lifespan'';
       (B) by amending paragraph (1) to read as follows:
       ``(1) In general.--Not later than 2 years after the date of 
     enactment of the Autism CARES Act of 2019, the Secretary 
     shall prepare and submit, to the Committee on Health, 
     Education, Labor, and Pensions of the Senate and the 
     Committee on Energy and Commerce of the House of 
     Representatives, a report concerning the health and well-
     being of individuals with autism spectrum disorder.''; and
       (C) in paragraph (2)--
       (i) by amending subparagraph (A) to read as follows:
       ``(A) demographic factors associated with the health and 
     well-being of individuals with autism spectrum disorder;'';
       (ii) in subparagraph (B), by striking ``young adults'' and 
     all that follows through the semicolon and inserting ``the 
     health and well-being of individuals with autism spectrum 
     disorder, including an identification of existing Federal 
     laws, regulations, policies, research, and programs;''; and
       (iii) by amending subparagraphs (C), (D), and (E) to read 
     as follows:
       ``(C) recommendations on establishing best practices 
     guidelines to ensure interdisciplinary coordination between 
     all relevant service providers receiving Federal funding;
       ``(D) comprehensive approaches to improving health outcomes 
     and well-being for individuals with autism spectrum disorder, 
     including--
       ``(i) community-based behavioral supports and 
     interventions;
       ``(ii) nutrition, recreational, and social activities; and
       ``(iii) personal safety services related to public safety 
     agencies or the criminal justice system for such individuals; 
     and
       ``(E) recommendations that seek to improve health outcomes 
     for such individuals, including across their lifespan, by 
     addressing--
       ``(i) screening and diagnosis of children and adults;
       ``(ii) behavioral and other therapeutic approaches;
       ``(iii) primary and preventative care;
       ``(iv) communication challenges;
       ``(v) aggression, self-injury, elopement, and other 
     behavioral issues;
       ``(vi) emergency room visits and acute care 
     hospitalization;
       ``(vii) treatment for co-occurring physical and mental 
     health conditions;
       ``(viii) premature mortality;
       ``(ix) medical practitioner training; and
       ``(x) caregiver mental health.''.
       (e) Authorization of Appropriations.--Section 399EE of the 
     Public Health Service Act (42 U.S.C. 280i-4) is amended--
       (1) in subsection (a), by striking ``$22,000,000 for each 
     of fiscal years 2015 through 2019'' and inserting 
     ``$23,100,000 for each of fiscal years 2020 through 2024'';
       (2) in subsection (b), by striking ``$48,000,000 for each 
     of fiscal years 2015 through 2019'' and inserting 
     ``$50,599,000 for each of fiscal years 2020 through 2024''; 
     and
       (3) in subsection (c), by striking ``there is authorized to 
     be appropriated $190,000,000 for each of fiscal years 2015 
     through 2019'' and inserting ``there are authorized to be 
     appropriated $296,000,000 for each of fiscal years 2020 
     through 2024''.

  The SPEAKER pro tempore. Pursuant to the rule, the gentleman from New 
Jersey (Mr. Pallone) and the gentleman from Texas (Mr. Burgess) each 
will control 20 minutes.
  The Chair recognizes the gentleman from New Jersey.


                             General Leave

  Mr. PALLONE. Mr. Speaker, I ask unanimous consent that all Members 
may have 5 legislative days in which to revise and extend their remarks 
and include extraneous material on H.R. 1058.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentleman from New Jersey?
  There was no objection.
  Mr. PALLONE. Mr. Speaker, I yield myself such time as I may consume.
  Mr. Speaker, I am proud to rise in support of H.R. 1058, the Autism 
CARES Act, which will continue critical research, surveillance, 
education, early detection, and intervention programs for people living 
with autism spectrum disorder, also known as ASD, and their families.
  The number of children diagnosed with ASD has risen dramatically over 
recent years. While 1 in every 150 children was diagnosed with ASD in 
1992, that number grew to 1 in every 59 children born in 2006.
  While some of this increase may be attributed to an overall higher 
number of people with ASD, a significant portion is likely due to 
increased efforts to diagnose people to get them the treatment they 
need. As efforts to identify individuals with autism have improved, so 
has the ability to intervene and treat them. Early intervention for 
children with ASD is associated with a positive outcome on 
developmental concerns.
  It is important that we continue to improve outcomes for children and 
all individuals with ASD, and that is what we are doing with this 
reauthorization of the Autism CARES program today. This bill would 
reauthorize funding for programs at the National Institutes of Health, 
Centers for Disease Control and Prevention, and Health Resources and 
Services Administration through 2024. The bill also expands efforts to 
conduct

[[Page H7305]]

research and intervene with better treatment options for all 
individuals with ASD across their lifespan, regardless of age. 
Additionally, the bill aims to reduce disparities among individuals 
from diverse racial, ethnic, geographic, or linguistic backgrounds, and 
directs additional care to rural and underserved areas.
  Mr. Speaker, I am confident that this legislation will improve health 
outcomes and quality of life for millions of Americans living with ASD, 
as well as their families. For that reason, I urge all of my colleagues 
to join me in supporting the bill today.
  Mr. Speaker, I reserve the balance of my time.
  Mr. BURGESS. Mr. Speaker, I yield myself such time as I may consume.
  Mr. Speaker, I rise today to speak in favor of H.R. 1058, the Autism 
Collaboration, Accountability, Research, Education, and Support Act of 
2019, also known as the Autism CARES Act.
  H.R. 1058 builds upon a strong foundation that Congress laid by 
passing the Combating Autism Act in 2006. This legislation, in 2006, 
expanded research, surveillance, and treatment of autism spectrum 
disorder, and it has equipped our Federal agencies with enhanced 
resources to expand its knowledge of this complex disorder.
  The number of children diagnosed with autism spectrum disorder has 
increased. It is even more imperative that we reauthorize this program 
and ensure the continuation of the Interagency Autism Coordinating 
Committee. As families across our Nation navigate raising children with 
autism, the Autism CARES Act would provide hope by authorizing funding 
for continued research, surveillance and education at the National 
Institutes of Health, Centers for Disease Control and Prevention, and 
Health Resources and Services Administration, and it would continue 
this through calendar year 2024.
  I thank Representatives  Chris Smith and Michael Doyle for their 
tireless work to reauthorize this program and better the lives for 
individuals with autism and their families.
  As Dr. Amy Hewitt pointed out at our hearing, the number of autism 
spectrum disorder diagnoses has risen more than 600 percent in the past 
few decades.
  In 2018, the Centers for Disease Control and Prevention determined 
that 1 in 59 children is diagnosed with an autism spectrum disorder, 
and that boys are four times more likely to be diagnosed with autism 
than are girls. As more individuals are diagnosed, it becomes even more 
important for Congress to ensure that there is adequate research and 
support services for these individuals and their families.
  Early detection and intervention for individuals with autism and 
their families help to increase the communication and social skills, 
preparing children for a successful future. The Autism CARES Act 
reauthorizes these early detection and intervention programs, in 
addition to workforce programs for health professionals. The Leadership 
Education in Neurodevelopmental and Related Disabilities, LEND, 
programs provide training for healthcare professionals to address 
intellectual disabilities, including autism.
  As we continue to support research efforts at the National Institutes 
of Health and through the Interagency Autism Coordinating Committee, we 
will learn more about autism and how to best address it. As we gain 
knowledge, our healthcare system needs to stand ready to implement the 
best practices obtained, which is why workforce programs are important.
  It is critical that we reauthorize the Autism CARES Act on time so 
that the Interagency Autism Coordinating Committee does not lapse, and 
so that our Nation's research can seamlessly continue.
  Mr. Speaker, I urge Members to support this bill, and I hope that the 
Senate will swiftly take up this legislation after its passage here 
today.
  Mr. Speaker, I reserve the balance of my time.
  Mr. PALLONE. Mr. Speaker, I yield 5 minutes to the gentleman from 
Pennsylvania (Mr. Michael F. Doyle), the Democratic sponsor of the 
bill.
  Mr. MICHAEL F. DOYLE of Pennsylvania. Mr. Speaker, I rise in support 
of the Autism CARES Act of 2019.

  My good friend and colleague, Chris Smith, and I formed the Autism 
Caucus in 2001 to raise awareness in Congress about autism spectrum 
disorder, ASD for short, to advocate for greater Federal involvement in 
understanding ASD, and to help individuals and families get the support 
they need.
  Nearly 20 years later, we have made significant progress, but we are 
still far behind where we would like to be and where individuals and 
families need us to be. In 2000, the CDC reported approximately 1 in 
150 children with ASD. The latest report found that number had 
increased to 1 in 59 children.
  Similarly, even though ASD can be diagnosed as early as 2 years old, 
most children are not diagnosed with ASD until after age 4. Children 
and adolescents with ASD have had average medical expenditures that 
were $4,000 to $6,000 higher than children without ASD.
  We also don't have a reliable estimate of autism's prevalence among 
adults. As autism is a lifelong condition, an estimated 50,000 teens 
and young adults with autism age out of school-based services each 
year. That is why it is so important that we pass this bill: to 
continue to close the gaps in knowledge and services surrounding ASD.
  The Autism CARES Act of 2019 increases authorized program levels to 
match our recent success in the Appropriations Committee: $296 million 
annually at NIH, $23 million at CDC, and $55 million at HRSA. This 
money will be used for research, surveillance, education, detection, 
and intervention for individuals with autism spectrum disorders of all 
ages, not just children.
  The bill also supports training the healthcare workforce to better 
understand and treat individuals with autism, and it prioritizes awards 
to medically underserved areas.

                              {time}  1515

  It also directs HHS to submit a report to Congress on the health and 
well-being of individuals on the autism spectrum, an often-overlooked 
aspect of ASD.
  The bill also adds important voices to the Interagency Autism 
Coordinating Committee, including representatives from the Department 
of Labor, the Department of Justice, the Department of Housing and 
Urban Development, and the VA.
  Finally, it increases the minimum number of self-advocates included 
in the public membership of the committee, an important step for a 
community whose voices are invaluable.
  I am proud of the progress that we have made over the last 20 years, 
but I know we have to do more. Autism CARES Act of 2019 takes important 
steps toward our ultimate goal to ensure that every individual has 
access to the treatment and support that is a right for them.
  I thank Congressman Smith, Chairman Pallone, Ranking Member Walden, 
Chairwoman Eshoo, and Ranking Member Burgess, as well as Autism Speaks, 
Autism Society of America, Association of University Centers on 
Disabilities, Autistic Self Advocacy Network, and other stakeholders 
for their input and support for this legislation.
  Mr. Speaker, reauthorization of the Autism CARES Act means a great 
deal to millions of Americans affected by autism spectrum disorder. I 
urge my colleagues to give this bill their wholehearted support and 
vote in favor of this legislation.
  Mr. BURGESS. Mr. Speaker, I yield 5 minutes to the gentleman from New 
Jersey (Mr. Smith), the principal author of this bill and the 
intellectual driving force behind getting this legislation 
reauthorized.
  Mr. SMITH of New Jersey. Mr. Speaker, I thank my good friend, Dr. 
Burgess.
  Mr. Speaker, the Autism CARES Act of 2019, I say to my colleagues, is 
a comprehensive reauthorization and strengthening of America's whole-
of-government autism spectrum disorder initiative.
  As the prime author of the bill, let me extend very special thanks to 
cosponsor Mike Doyle from Pennsylvania for his extraordinary 
leadership, his partnership, and his friendship over these many years; 
to Health Subcommittee Chairwoman Anna Eshoo for expertly shepherding 
this bill through her subcommittee with Ranking Member Dr. Burgess; and 
my deep

[[Page H7306]]

gratitude to the full committee Chair Frank Pallone and Ranking Member 
Greg Walden.
  Mr. Speaker, I also thank staff, including Kelsey Griswold, Kate 
Werley, Rachel Fybel, Dr. Kristen Shatynski, and Stephen Holland, for 
their tremendous help and assistance on this legislation.
  Frankly, we couldn't have done this without so many autism advocates, 
including and especially Stuart Spielman of Autism Speaks and Scott 
Badesch of the Autism Society.
  Mr. Speaker, this bipartisan legislation powerfully supports and 
pursues durable remedies and effective interventions for the 
approximately 1.5 million children with ASD. That is an estimated 1 in 
59 children in the U.S. In my home State of New Jersey, that is 1 in 
34. We do have the highest rate, according to the CDC.
  This bill also helps adults with autism who were and are today often 
misdiagnosed, underdiagnosed, and overlooked. Language throughout the 
bill emphasizes that causes, diagnosis, detection, prevention, and 
treatment of autism spectrum disorder must be throughout the lifespan 
of that person.
  According to Drexel University's autism center--and this is a very 
important number--in our last bill that the gentleman, Mike Doyle, and 
I did just 5 years ago, it pointed out that the number of young people 
who become adults is increasing every year. Now, it is about 50,000 to 
60,000 children who age out every year, creating challenges for 
education, housing, employment, and access to healthcare.
  This legislation also assists parents, families, and caregivers who 
deeply love and cherish their children and want the brightest future 
for them. In addition to its groundbreaking prevalence studies and 
crafting a whole myriad of intervention work, CDC's ``Learn the Signs. 
Act Early.'' program is just one more amazing tool for parents.
  At its core, the bill authorizes a little over $1.8 billion over 5 
years for NIH, the Centers for Disease Control and Prevention, and 
HRSA.
  Looking back, Mr. Speaker, it was two dedicated parents from New 
Jersey who helped launch the comprehensive Federal policy we are now 
reauthorizing. In September 1997, Bobbi and Billy Gallagher of Brick, 
New Jersey, my constituents, parents of two constituent autistic 
children, walked into my Ocean County office looking for help.
  They believed that Brick had a disproportionate number of students 
with autism and wanted action, especially for their son Austin and 
daughter Alana.
  I invited the CDC, the ATSDR, and other Federal agencies to Brick for 
an investigation, only to learn when they did the study that prevalence 
rates were high in other communities as well.
  Believing we had a serious spike in prevalence everywhere, I 
introduced the ASSURE Act, cosponsored by 199 Members, which was 
incorporated as title I of the Children's Health Act of 2000.
  Progress, Mr. Speaker, has been made over the many years, 
particularly in the area of looking at risk factors, but also the 
overwhelming importance of early intervention.
  Mr. Speaker, as my colleagues have pointed out, this legislation 
reauthorizes and expands the interagency coordinating committee, or 
IACC, managed so effectively and professionally by Dr. Susan Daniels, 
the director of the Office of Autism Research Coordination.
  Speaking to this, the Director of the National Institute of Mental 
Health, Dr. Joshua Gordon, said yesterday:

       The National Institutes of Health is proud to work hand-in-
     hand with the Interagency Autism Coordinating Committee to 
     ensure the coordination of research efforts focusing on 
     critical topics related to autism, such as developing early 
     detection and screening tools, understanding the genetic and 
     biological underpinnings of autism, and developing and 
     testing the effectiveness of services and supports to improve 
     functional and health outcomes of individuals with autism.

  As my colleague, Mr. Doyle, said a moment ago, we have expanded IACC. 
The Departments of Labor, Justice, Veterans Affairs, and HUD are now 
part of it, and there has been an expansion from two to three members 
for self-advocates, parents, legal guardians, and advocates.
  Let me remind Members, and I encourage them even to go online and 
check this out.
  The SPEAKER pro tempore. The time of the gentleman has expired.
  Mr. BURGESS. Mr. Speaker, I yield an additional 30 seconds to the 
gentleman from New Jersey.
  Mr. SMITH of New Jersey. Mr. Speaker, IACC has a strategic plan that 
is updated every year, so there is no duplication of efforts. They ask 
several essential questions, and all the research revolves around 
trying to find answers to those seven questions.
  HRSA is all about helping the geographically isolated and 
economically or medically vulnerable. There are 52 Leadership Education 
in Neurodevelopmental and Other Related Disabilities, or LEND, training 
programs and 10 developmental-behavioral pediatric training programs.
  They are reauthorized, and we have one at Rutgers right in my home 
State. They are doing an amazing job. There are 38 organizations that 
support this, and I hope all Members will support it as well.
  Mr. Speaker, autism spectrum disorder (ASD), is ``a 
neurodevelopmental condition characterized by persistent impairments in 
social communication and social interaction, as well as restricted and 
repetitive patterns of behavior, leading to difficulty in developing, 
maintaining and understanding relationships with others.''
  As Autism Speaks notes ``it is often accompanied by sensory 
sensitivities and medical issues such as gastrointestinal (GI) 
disorders, seizures or sleep disorders, as well as mental health 
challenges such as anxiety, depression and attention issues.''
  The Autism Collaboration, Accountability, Research, Education and 
Support Act--or simply the Autism CARES Act of 2019--is a comprehensive 
reauthorization and strengthening of America's whole-of-government 
Autism Spectrum Disorder (ASD) initiative.
  As prime author of the bill let me extend special thanks to cosponsor 
Mike Doyle of Pennsylvania for his extraordinary leadership, 
partnership and friendship and to the Chairwoman of the Health 
subcommittee Anna Eshoo for expertly shepherding this through the 
committee with ranking member Dr. Michael Burgess and my deep gratitude 
to full committee chair Frank Pallone and ranking member Greg Walden.
  I also want to thank staff including Kelsey Griswold, Kate Werley, 
Rachel Fybel, Dr. Kristen Shatynski, and Stephen Holland for their 
tremendous help and assistance.
  And frankly, we couldn't have done this without so many autism 
advocates especially Stuart Spielman of Autism Speaks and Scott Badesch 
of Autism Society.
  Mr. Speaker, this bipartisan, bicameral legislation powerfully 
supports and pursues durable remedies and effective interventions for 
the approximately 1.5 million children with ASD,--that is an estimated 
1 in 59 children in the United States, in my home State of New Jersey, 
1 in 34 children, the highest rate in the CDC study.
  This bill also helps adults with autism who were and are today often 
misdiagnosed, underdiagnosed and overlooked. Language throughout the 
bill emphasizes that causes, diagnosis, detection, prevention and 
treatment of autism spectrum disorder must be throughout the lifespan 
of a person.
  According to Drexel University's AJ Drexel Autism Center, about fifty 
to sixty thousand children ``age out'' to adulthood each year creating 
challenges for education, housing, employment and access to health 
care. Autism CARES of 2019 continues the work on aging out begun under 
the Autism CARES Act of 2014.
  The Autism CARES Act of 2019 assists the parents, families and 
caregivers who deeply love and cherish children with ASD and want the 
brightest future possible for them. In addition to its groundbreaking 
prevalence studies and early intervention work, CDC's Learn the Signs. 
Act Early is an amazing tool for parents.
  The legislation also robustly supports the dedicated physicians, 
scientists and support teams who daily strive to treat, research and 
provide meaningful answers.
  The Autism CARES Act of 2019 authorizes a little over $1.8 billion 
over five years for the National Institutes of Health (NIH), the 
Centers for Disease Control and Prevention (CDC) and the Health 
Resources and Services Administration (HRSA).
  Looking back, Mr. Speaker, it was two dedicated parents from New 
Jersey who helped launch the comprehensive Federal policy we seek to 
reauthorize today.
  In September of 1997, Bobbie and Billy Gallagher of Brick, New 
Jersey--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

[[Page H7307]]

action, especially for their son Austin and daughter Alana, so I 
invited the CDC, ATSDR 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, cosponsored by 199 members, which 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. Other studies have identified ASD risk factors including 
pesticides, air pollutants, dietary factors.
  Early intervention is making a major positive impact in the lives of 
children with ASD but parents need more support. In 2016, Bobbi 
Gallagher wrote a book: A Brick Wall--How a Boy with No Words Spoke to 
the World. In this highly personal, extraordinarily moving must read 
account of raising two children with autism, Bobbi writes: ``This mom 
thing is hard.''
  Mr. Speaker, Autism CARES Act of 2019 ensures that the federal 
government continues to help hundreds of thousands of parents like the 
Gallaghers--funding research and support programs and sharing best 
practices. The bill reauthorizes and expands the lnteragency 
Autism Coordinating Committee (IACC) managed so effectively and 
professionally by Dr. Susan Daniels, Director of the Office of Autism 
Research Coordination (OARC).

  Coordination is key to maximizing outcomes. The Director of the 
National Institutes of Mental Health (NIMH) Dr. Joshua Gordon--who also 
serves as IACC chair said yesterday:
  ``The National Institutes of Health is proud to work hand-in-hand 
with the lnteragency Autism Coordinating Committee to ensure the 
coordination of research efforts focusing on critical topics related to 
autism, such as developing early detection and screening tools, 
understanding the genetic and biological underpinnings of autism, and 
developing and testing the effectiveness of services and supports to 
improve functional and health outcomes of individuals with autism.''
  New members of IACC added by our new bill are representatives from 
the Departments of Labor, Justice, Veterans Affairs and Housing and 
Urban Development as well as raising from two to three members who are 
self-advocates, parents or legal guardians and advocacy/service 
organizations.
  IACC not only includes a cross section of knowledgeable stakeholders, 
but periodically develops the IACC Strategic Plan for ASD and most 
recently the 2018 update.
  The IACC strategic plan asks the seven most essential questions and 
helps steer research projects and resources to find answers including: 
How can I recognize the signs of ASD, and why is early detection so 
important?; What is the biology underlying ASD?; What causes ASD, and 
can disabling aspects of ASD be prevented or preempted?; Which 
treatments and interventions will help?; What kinds of services and 
supports are needed to maximize quality of life for people on the 
Autism spectrum?; How can we meet the needs of people with ASD as they 
progress into and through adulthood?; and How do we continue to build, 
expand, and enhance the infrastructure system to meet the needs of the 
ASD community?
  Also, each year since 2007, IACC has published a Summary of Advances 
in Autism Spectrum Disorder Research.
  Dr. Ann Wagner does an extraordinary job as National Autism 
Coordinator--created by Autism CARES Act of 2014--ensuring the 
implementation of national autism spectrum disorder (ASD) research, 
services, and support activities across federal agencies.
  As my colleagues know, the Health Resources and Services 
Administration (HRSA) is the ``primary federal agency for improving 
healthcare to people who are geographically isolated, economically or 
medically vulnerable.'' The work begun under Autism CARES Act of 2014 
continues and is expanded with this legislation including the training 
of health care professionals ``to provide screening, diagnostic and 
early, evidence-based intervention services . . . ''. This includes the 
52 Leadership Education in Neurodevelopmental and other Related 
Disabilities (LEND) training programs like the one at Rutgers in my 
state and 10 Developmental-Behavior Pediatric (DBP) training programs.
  The HHS Secretary is empowered by the new legislation to prioritize 
DBP grants to ``rural and underserved areas.''
  According to the April 2019 Report to Congress, most children who 
have autism are not diagnosed until after they reach age 4 years--or 
later--even though many children can be identified before age 2 years. 
Recent studies supported by NIH have uncovered distinct differences in 
the brain development of children with ASD, as early as 6 months. The 
earlier ASD is found, the earlier interventions can begin.
  Finally, not later than 2 years after enactment, the Autism CARES Act 
requires a comprehensive report on the demographic factors associated 
with the health and well-being of individuals with ASD, recommendations 
on establishing best practices to ensure interdisciplinary 
coordination, improvements for health outcomes, community based 
behavioral support and interventions, nutrition and recreational and 
social activities, personal safety and more.
  Mr. Speaker, more than three dozen major organizations have helped 
shape this legislation and strongly support passage including: Autism 
Society of America, Autism Speaks, Autism New Jersey, American Academy 
of Neurology, American Academy of Pediatrics, American Association on 
Health and Disability, American Psychological Association, American 
Therapeutic Recreation Association, Association of Maternal & Child 
Health Programs, Association of Special Children and Families, 
Association of University Centers on Disability, Autism Science 
Foundation, Children's Hospital Association, Council on Exceptional 
Children, Easterseals, EveryLife Foundation, Family Voices, Family 
Voices New Jersey, Family Voices North Dakota, Lakeshore Foundation, 
Madison House Autism Foundation, Maine Parent Federation, Marcus Autism 
Center, National Alliance on Mental Illness, National Association of 
Councils on Developmental Disabilities, National Association of 
Pediatric Nurse Practitioners, National Association of State Directors 
of Developmental Disabilities Services, National Center for Learning 
Disabilities, National Council on Severe Autism, National Down Syndrome 
Congress, National Down Syndrome Society, National Fragile X 
Foundation, Network of Jewish Human Service Agencies, SPAN Parent 
Advocacy Network, TASH, The Independence Center, The Jewish Federations 
of North America, Thompson Center for Autism & Neurodevelopmental 
Disorders.
  Mr. PALLONE. Mr. Speaker, I yield 3 minutes to the gentlewoman from 
California (Ms. Eshoo), chairwoman of our Health Subcommittee.
  Ms. ESHOO. Mr. Speaker, I thank the chairman of the full committee. I 
want to acknowledge the ranking member of the Health Subcommittee, Dr. 
Burgess. I want to salute Mr. Doyle and Mr. Smith for their passion and 
their advocacy inside the Congress and all the advocates and their 
organizations outside the Congress, without whom we wouldn't be on the 
floor today on this bill.
  I am so proud that our Health Subcommittee advanced this bipartisan 
legislation, sponsored by Mr. Doyle and Mr. Smith.
  The legislation extends the Autism CARES Act for 5 years, and that is 
very important. The other very important bookend is that the bill funds 
research at the NIH to understand the biology behind autism. It will 
help to build the infrastructure at CDC to advance our understanding of 
autism, and it trains medical providers on screening, on diagnosis, and 
on intervention.
  I think what is so important in the paragraph that I just stated is 
understanding the biology behind autism. There is so much that we still 
don't know today. This act renews the Federal Government's commitment 
to getting the answers.
  During the hearing on the bill at our Health Subcommittee, we heard 
how critical the Autism CARES programs are. Researchers, physicians, 
parents, and patients rely on Autism CARES to fund the support 
services, research, training, and surveillance programs to get people 
the diagnoses and the services they need.
  The act expands research, and it provides services to people who are 
autistic, with an important focus on addressing racial disparities. 
Black and Latino children tend to go diagnosed later than White 
children and are often misdiagnosed. They have less access to services, 
and they are underrepresented in most autism research. This 5-year 
renewal addresses these disparities, as well as other challenges 
related to autism research, education, and detection.
  My congressional district benefits directly from the act. I am proud 
that Stanford University receives CARES funding to research how certain 
innovative treatments can improve social behavior. Between 2014 and 
2017, California received $237 million from the NIH to study autism.
  When the Federal Government invests in research, the return on 
investment can improve the lives of all Americans. I hope that the 
House votes

[[Page H7308]]

unanimously for this legislation. It certainly deserves it.
  Those families with loved ones who do have autism, I know that their 
gratitude will be unending for what is built into this act. It is 
worthy of them, and it is worthy of our vote.
  Mr. BURGESS. Mr. Speaker, I yield 2 minutes to the gentleman from 
Georgia (Mr. Carter).
  Mr. CARTER of Georgia. Mr. Speaker, I thank the gentleman for 
yielding.
  Mr. Speaker, reauthorizing the Autism CARES Act will continue the 
scientific development in understanding autism and support those with 
autism spectrum disorder.
  Since its original passage in 2006, we have invested over $3 billion 
for the National Institutes of Health, the Centers for Disease Control 
and Prevention, and Health Resources and Services Administration to 
help the autism community.
  We provided services through programs and grants to benefit 
individuals with autism. We have improved training for those working 
with autistic patients, including how to better deter and diagnose 
autism.
  We have expanded prevalence monitoring to improve our understanding 
of our population, and we have also invested in research that 
transforms our understanding of autism spectrum disorder and how we 
were able to treat and care for that community.
  In Georgia, we are able to see up close what a big impact these 
programs can make in our children's lives. Children's Hospital of 
Atlanta's Marcus Autism Center is one of the largest autism centers in 
the U.S. Since opening, they have treated more than 40,000 children 
from Georgia and across the country, and we are blessed to have them in 
our State.
  This reauthorization builds on our good work from the past, ensuring 
that places like the Marcus Autism Center can continue helping our 
children moving forward. I encourage my colleagues to support this 
legislation.
  Mr. PALLONE. Mr. Speaker, I yield 1 minute to the gentleman from 
Rhode Island (Mr. Langevin).
  Mr. LANGEVIN. Mr. Speaker, I thank the gentleman for yielding.
  Mr. Speaker, I thank both the chairman and the ranking member of the 
committee and the sponsors of this important piece of legislation. I am 
proud to rise in support of the Autism CARES reauthorization act.
  This issue is very personal to me. As an uncle of a young man with 
autism, my nephew, Joshua, I know how challenging this condition can 
be.
  I also know that, unfortunately, we still don't know the causes, let 
alone how to cure autism. It underscores the importance of why this 
legislation is so important to continue to invest in research and, at 
best, treatments for the condition.
  We do know, Mr. Speaker, that early intervention and early treatments 
do make a difference in the long-term outcomes.

                              {time}  1530

  So the provisions in this bill, the Autism CARES Act, are right on 
point. It is well thought-out and, again, encourages both research 
through NIH and the talented researchers who do this important work 
and, again, those who also treat both children and adults with autism. 
It is essential we pass this bill.
  We also need to pay attention to the long-term care components. There 
are long-term care challenges that families have to contend with. We 
need to do our best to support them, and Mr. Speaker, I urge passage.
  Mr. BURGESS. Mr. Speaker, I yield myself the balance of my time.
  Once again, I want to thank my colleague, Mr. Smith from New Jersey, 
for being the intellectual driver and providing the enthusiasm for 
getting this bill to the floor and getting it passed.
  Mr. Speaker, I urge all colleagues to support this bill, and I yield 
back the balance of my time.
  Mr. PALLONE. Mr. Speaker, I yield myself such time as I may consume.
  Mr. Speaker, I don't think I can stress enough how important this 
legislation is. I do want to thank my colleague from New Jersey, the 
chief sponsor, and also our Democratic sponsor, Mr. Doyle, for pushing 
very hard to make sure that this bill went through regular order in a 
timely fashion. I agree with Dr. Burgess that, hopefully, this is 
something the Senate will take up and will get to the President 
quickly.
  Mr. Speaker, I ask support by all of our colleagues for the bill, and 
I yield back the balance of my time.
  Mr. WALDEN. Mr. Speaker, I rise today in support of H.R. 1058, the 
Autism Collaboration, Accountability, Research, Education, and Support 
Act, or Autism CARES Act. This important bill, led by Representatives 
Chris Smith and Mike Doyle, reauthorizes the Interagency Autism 
Coordinating Committee along with funding for research, public health 
surveillance, and workforce development programs that directly impact 
patients with autism spectrum disorder. Reauthorization of these 
important initiatives demonstrates our commitment to provide a 
coordinated federal response to the needs of individuals diagnosed with 
autism and related neurodevelopmental disabilities. I'd like to thank 
Representatives Smith and Doyle for their tireless work on this 
important legislation and I urge my colleagues to vote yes.
  The SPEAKER pro tempore. The question is on the motion offered by the 
gentleman from New Jersey (Mr. Pallone) that the House suspend the 
rules and pass the bill, H.R. 1058, as amended.
  The question was taken; and (two-thirds being in the affirmative) the 
rules were suspended and the bill, as amended, was passed.
  The title of the bill was amended so as to read: ``A bill to amend 
the Public Health Service Act to enhance activities of the National 
Institutes of Health with respect to research on autism spectrum 
disorder and enhance programs relating to autism, and for other 
purposes.''.
  A motion to reconsider was laid on the table.

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