The Autism Collaboration, Accountability, Research, Education, and Support Act of 2014 has passed the U.S. House of Representatives. The discussion that went on in the House is copied below. If passed into law (i.e. if the Senate votes for it and it is signed by the president), the structure which plans for funding allocations and for coordination of research efforts will continue. Funding levels will increase. One notable change:
The Secretary of Health and Human Services shall designate an existing official within the Department of Health and Human Services to oversee, in consultation with the Secretaries of Defense and Education, national autism spectrum disorder research, services, and support activities
A single individual will be designated to oversee Federal autism activities. Something like the Autism Czar that was discussed when Mr. Obama was first running for president.
AUTISM COLLABORATION, ACCOUNTABILITY, RESEARCH, EDUCATION, AND SUPPORT
ACT OF 2014
Mr. PITTS. 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.
The Clerk read the title of the bill.
The text of the bill is as follows:
H.R. 4631
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
2014” or the “Autism CARES Act of 2014”.
SEC. 2. NATIONAL AUTISM SPECTRUM DISORDER INITIATIVE.
(a) In General.–The Secretary of Health and Human Services
shall designate an existing official within the Department of
Health and Human Services to oversee, in consultation with
the Secretaries of Defense and Education, national autism
spectrum disorder research, services, and support activities.
(b) Duties.–The official designated under subsection (a)
shall–
(1) implement autism spectrum disorder activities, taking
into account the strategic plan developed by the Interagency
Autism Coordinating Committee under section 399CC(b) of the
Public Health Service Act (42 U.S.C. 280i-2(b)); and
(2) ensure that autism spectrum disorder activities of the
Department of Health and Human Services and of other Federal
departments and agencies are not unnecessarily duplicative.
SEC. 3. RESEARCH PROGRAM.
Section 399AA of the Public Health Service Act (42 U.S.C.
280i) is amended–
(1) in subsection (a)(1), by inserting “for children and
adults” after “reporting of State epidemiological data”;
(2) in subsection (b)(1)–
(A) by striking “establishment of regional centers of
excellence” and inserting “establishment or support of
regional centers of excellence”; and
(B) by inserting “for children and adults” before the
period at the end;
(3) in subsection (b)(2), by striking “center to be
established” and inserting “center to be established or
supported”; and
(4) in subsection (e), by striking “2014” and inserting
“2019”.
SEC. 4. AUTISM INTERVENTION.
Section 399BB of the Public Health Service Act (42 U.S.C.
280i-1) is amended–
(1) in subsection (b)(1), by inserting “culturally
competent” after “provide”;
(2) in subsection (c)(2)(A)(ii), by inserting “(which may
include respite care for caregivers of individuals with an
autism spectrum disorder)” after “services and supports”;
(3) in subsection (e)(1)(B)(v), by inserting before the
semicolon the following: “, which
[[Page H5689]]
may include collaborating with research centers or networks
to provide training for providers of respite care (as defined
in section 2901)”;
(4) in subsection (f), by striking “grants or contracts”
and all that follows through “for individuals with” and
inserting “grants or contracts, which may include grants or
contracts to research centers or networks, to determine the
evidence-based practices for interventions to improve the
physical and behavioral health of individuals with”; and
(5) in subsection (g), by striking “2014” and inserting
“2019”.
SEC. 5. 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 (1)–
(i) by striking “and annually update”; and
(ii) by striking “intervention” and inserting
“interventions, including school and community-based
interventions”;
(B) by striking paragraph (2);
(C) by redesignating paragraph (1) as paragraph (2), and
inserting before such redesignated paragraph the following:
“(1) monitor autism spectrum disorder research, and to the
extent practicable services and support activities, across
all relevant Federal departments and agencies, including
coordination of Federal activities with respect to autism
spectrum disorder;”;
(D) in paragraph (3), by striking “recommendations to the
Director of NIH”;
(E) in paragraph (4), by inserting before the semicolon the
following: “, and the process by which public feedback can
be better integrated into such decisions”; and
(F) by striking paragraphs (5) and (6) and inserting the
following:
“(5) develop a strategic plan for the conduct of, and
support for, autism spectrum disorder research, including as
practicable for services and supports, for individuals with
an autism spectrum disorder and the families of such
individuals, which shall include–
“(A) proposed budgetary requirements; and
“(B) recommendations to ensure that autism spectrum
disorder research, and services and support activities to the
extent practicable, of the Department of Health and Human
Services and of other Federal departments and agencies are
not unnecessarily duplicative; and
“(6) submit to Congress and the President–
“(A) an annual update on the summary of advances described
in paragraph (2); and
“(B) an annual update to the strategic plan described in
paragraph (5), including any progress made in achieving the
goals outlined in such strategic plan.”;
(2) in subsection (c)–
(A) in paragraph (1)–
(i) by striking the paragraph designation, the heading, and
the matter preceding subparagraph (A) and inserting the
following:
“(1) Federal membership.–The Committee shall be composed
of the following Federal members–”;
(ii) in subparagraph (C)–
(I) by inserting “, such as the Administration for
Community Living, Administration for Children and Families,
the Centers for Medicare & Medicaid Services, the Food and
Drug Administration, and the Health Resources and Services
Administration” before the semicolon at the end; and
(II) by adding at the end “and”;
(iii) in subparagraph (D)–
(I) by inserting “and the Department of Defense” after
“Department of Education”; and
(II) by striking at the end “; and” and inserting a
period; and
(iv) by striking subparagraph (E);
(B) in paragraph (2)–
(i) in the paragraph heading, by striking “Additional”
and inserting “Non-federal”;
(ii) in the matter preceding subparagraph (A), by striking
“Not fewer than 6 members of the Committee, or 1/3 of the
total membership of the Committee, whichever is greater” and
inserting “Not more than \1/2\, but not fewer than 1/3, of
the total membership of the Committee”;
(iii) in subparagraph (A), by striking “one such member
shall be an individual” and inserting “two such members
shall be individuals”;
(iv) in subparagraph (B), by striking “one such member
shall be a parent or legal guardian” and inserting “two
such members shall be parents or legal guardians”; and
(v) in subparagraph (C), by striking “one such member
shall be a representative” and inserting “two such members
shall be representatives”; and
(C) by adding at the end the following:
“(3) Period of appointment; vacancies.–
“(A) Period of appointment for non-federal members.–Non-
Federal members shall serve for a term of 4 years, and may be
reappointed for one or more additional 4-year terms.
“(B) Vacancies.–A vacancy on the Committee shall be
filled in the manner in which the original appointment was
made and shall not affect the powers or duties of the
Committee. Any member appointed to fill a vacancy for an
unexpired term shall be appointed for the remainder of such
term. A member may serve after the expiration of the member’s
term until a successor has been appointed.”;
(3) in subsection (d)–
(A) by striking paragraph (2); and
(B) by redesignating paragraphs (3) and (4) as paragraphs
(2) and (3), respectively; and
(4) in subsection (f), by striking “2014” and inserting
“2019”.
SEC. 6. REPORTS.
Section 399DD of the Public Health Service Act (42 U.S.C.
280i-3) is amended–
(1) in the section heading, by striking “report” and
inserting “reports”;
(2) in subsection (b), by redesignating paragraphs (1)
through (9) as subparagraphs (A) through (I), respectively,
and realigning the margins accordingly;
(3) by redesignating subsections (a) and (b) as paragraphs
(1) and (2), respectively, and realigning the margins
accordingly;
(4) by inserting after the section heading the following:
“(a) Progress Report.–”;
(5) in subsection (a)(1) (as so redesignated)–
(A) by striking “2 years after the date of enactment of
the Combating Autism Reauthorization Act of 2011” and
inserting “4 years after the date of enactment of the Autism
CARES Act of 2014”;
(B) by inserting “and the Secretary of Defense” after
“the Secretary of Education”; and
(C) by inserting “, and make publicly available, including
through posting on the Internet Web site of the Department of
Health and Human Services,” after “Representatives”; and
(6) in subsection (a)(2) (as so redesignated)–
(A) in subparagraph (A), (as so redesignated), by striking
“Combating Autism Act of 2006” and inserting “Autism CARES
Act of 2014”;
(B) in subparagraph (B) (as so redesignated), by striking
“particular provisions of Combating Autism Act of 2006” and
inserting “amendments made by the Autism CARES Act of
2014”;
(C) by striking subparagraph (C) (as so redesignated), and
inserting the following:
“(C) information on the incidence and prevalence of autism
spectrum disorder, including available information on the
prevalence of autism spectrum disorder among children and
adults, and identification of any changes over time with
respect to the incidence and prevalence of autism spectrum
disorder;”;
(D) in subparagraph (D) (as so redesignated), by striking
“6-year period beginning on the date of enactment of the
Combating Autism Act of 2006” and inserting “4-year period
beginning on the date of enactment of the Autism CARES Act of
2014 and, as appropriate, how this age varies across
population subgroups”;
(E) in subparagraph (E) (as so redesignated), by striking
“6-year period beginning on the date of enactment of the
Combating Autism Act of 2006” and inserting “4-year period
beginning on the date of enactment of the Autism CARES Act of
2014 and, as appropriate, how this age varies across
population subgroups”;
(F) in subparagraph (F) (as so redesignated), by inserting
“and, as appropriate, on how such average time varies across
population subgroups” before the semicolon at the end;
(G) in subparagraph (G) (as so redesignated)–
(i) by striking “including by various subtypes,” and
inserting “including by severity level as practicable,”;
and
(ii) by striking “child may” and inserting “child or
other factors, such as demographic characteristics, may”;
and
(H) by striking subparagraph (I) (as so redesignated), and
inserting the following:
“(I) a description of the actions taken to implement and
the progress made on implementation of the strategic plan
developed by the Interagency Autism Coordinating Committee
under section 399CC(b).”; and
(7) by adding at the end the following new subsection:
“(b) Report on Young Adults and Transitioning Youth.–
“(1) In general.–Not later than 2 years after the date of
enactment of the Autism CARES Act of 2014, the Secretary of
Health and Human Services, in coordination with the Secretary
of Education and in collaboration with the Secretary of
Transportation, the Secretary of Labor, the Secretary of
Housing and Urban Development, and the Attorney General,
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 young adults with autism
spectrum disorder and the challenges related to the
transition from existing school-based services to those
services available during adulthood.
“(2) Contents.–The report submitted under paragraph (1)
shall contain–
“(A) demographic characteristics of youth transitioning
from school-based to community-based supports;
“(B) an overview of policies and programs relevant to
young adults with autism spectrum disorder relating to post-
secondary school transitional services, including an
identification of existing Federal laws, regulations,
policies, research, and programs;
“(C) proposals on establishing best practices guidelines
to ensure–
“(i) interdisciplinary coordination between all relevant
service providers receiving Federal funding;
“(ii) coordination with transitioning youth and the family
of such transitioning youth; and
[[Page H5690]]
“(iii) inclusion of the individualized education program
for the transitioning youth, as prescribed in section 614 of
the Individuals with Disabilities Education Act (20 U.S.C.
1414);
“(D) comprehensive approaches to transitioning from
existing school-based services to those services available
during adulthood, including–
“(i) services that increase access to, and improve
integration and completion of, post-secondary education, peer
support, vocational training (as defined in section 103 of
the Rehabilitation Act of 1973 (29 U.S.C. 723)),
rehabilitation, self-advocacy skills, and competitive,
integrated employment;
“(ii) community-based behavioral supports and
interventions;
“(iii) community-based integrated residential services,
housing, and transportation;
“(iv) nutrition, health and wellness, recreational, and
social activities;
“(v) personal safety services for individuals with autism
spectrum disorder related to public safety agencies or the
criminal justice system; and
“(vi) evidence-based approaches for coordination of
resources and services once individuals have aged out of
post-secondary education; and
“(E) proposals that seek to improve outcomes for adults
with autism spectrum disorder making the transition from a
school-based support system to adulthood by–
“(i) increasing the effectiveness of programs that provide
transition services;
“(ii) increasing the ability of the relevant service
providers described in subparagraph (C) to provide supports
and services to underserved populations and regions;
“(iii) increasing the efficiency of service delivery to
maximize resources and outcomes, including with respect to
the integration of and collaboration among services for
transitioning youth;
“(iv) ensuring access to all services necessary to
transitioning youth of all capabilities; and
“(v) encouraging transitioning youth to utilize all
available transition services to maximize independence, equal
opportunity, full participation, and self-sufficiency.”.
SEC. 7. 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 “fiscal years 2012
through 2014” and inserting “fiscal years 2015 through
2019”;
(2) in subsection (b), by striking “fiscal years 2011
through 2014” and inserting “fiscal years 2015 through
2019”; and
(3) in subsection (c), by striking “$161,000,000 for each
of fiscal years 2011 through 2014” and inserting
“$190,000,000 for each of fiscal years 2015 through 2019”.
The SPEAKER pro tempore. Pursuant to the rule, the gentleman from
Pennsylvania (Mr. Pitts) and the gentleman from Texas (Mr. Gene Green)
each will control 20 minutes.
The Chair recognizes the gentleman from Pennsylvania.
General Leave
Mr. PITTS. 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.
The SPEAKER pro tempore. Is there objection to the request of the
gentleman from Pennsylvania?
There was no objection.
Mr. PITTS. 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. GENE GREEN of Texas. Mr. Speaker, I yield myself such time as I
may consume.
Mr. Speaker, I rise in support of H.R. 4631, the Autism
Collaboration, Accountability, Research, Education, and Support Act of
2014.
Autism spectrum disorder, or ASD, is a developmental disability that
can lead to significant social, communication, and behavioral
challenges.
We still do not know all the causes of autism, and we do not have a
cure, but we do know that early intervention services can improve a
child’s development.
Recent data for the Centers for Disease Control and Prevention show
more children than ever before are receiving an autism diagnosis. This
is due, at least in part, to a broader definition of ASD and better
diagnosis, but we cannot rule out the possibility of a true increase in
the number of Americans with ASD.
Continued Federal support for autism activities at HHS will help us
learn more about the causes of autism. It will help more children
receive early diagnosis and intervention, as well as access to services
that they need throughout their lives.
I want to acknowledge the sponsor of this legislation–Congressman
Smith and Congressman Doyle; the sponsors of the Senate companion
legislation, Senators Menendez and Enzi; and leaders on the Energy and
Commerce Committee and on the Senate Health, Education, Labor, and
Pensions Committee–for making it possible to have a consensus bill
before the House today.
I urge my colleagues to join me in supporting this bill, so we can
send it to the Senate and on to the President for his signature, well
in advance of the September 30 sunset provisions in current law.
Mr. Speaker, I reserve the balance of my time.
Mr. PITTS. 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.
Mr. SMITH of New Jersey. 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.
[[Page H5691]]
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.
The SPEAKER pro tempore. The time of the gentleman has expired.
Mr. PITTS. I yield an additional minute to the gentleman.
Mr. SMITH of New Jersey. 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.
{time} 1830
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.”
[[Page H5692]]
“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.
Mr. GENE GREEN of Texas. Mr. Speaker, I yield such time as he may
consume to the gentleman from Pennsylvania (Mr. Doyle), my good friend
and colleague.
Mr. DOYLE. 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. PITTS. 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. BILIRAKIS. Mr. Speaker, I rise today in support of H.R. 4631, the
Autism CARES Act, of which I am an original cosponsor. I want to
commend a sponsor, Mr. Smith from New Jersey, as well as a Democratic
prime cosponsor, Mr. Mike Doyle from the great State of Pennsylvania,
for sponsoring this bill.
Autism is serious and it does not discriminate. People in all racial,
socioeconomic, and ethnic groups are impacted, Mr. Speaker. Autism
awareness and research is something people from all walks of life can
support.
One in 68 children is diagnosed with autism. That is a disturbing
statistic. This legislation will help direct autism research on a
Federal level. This research is vital, and I am glad my colleagues and
I have come together in a
[[Page H5693]]
bipartisan manner to continue autism research, early identification,
intervention, and education.
I am proud to support this legislation, and I urge my colleagues to
support final passage of this legislation.
Mr. GENE GREEN of Texas. Mr. Speaker, I yield such time as he may
consume to the gentleman from New York (Mr. Engel), my good friend and
desk mate on the Energy and Commerce Committee and the ranking member
of the Foreign Affairs Committee.
Mr. ENGEL. 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. PITTS. Mr. Speaker, I yield 1 minute to the distinguished
gentleman from Illinois (Mr. Roskam), one of our distinguished leaders.
Mr. ROSKAM. Mr. Speaker, I thank the gentleman for yielding.
One in 68 is diagnosed with autism, Mr. Speaker, and we have an
opportunity to come alongside those families that are dealing with this
diagnosis by supporting the Autism CARES Act. It is a holistic
approach, one that takes on research, education, early detection, and
intervention for those all across the autism spectrum.
There are so many times that we can get into dollars and cents and
chapter and verse and future savings in all of these things, but think
about it. Beyond all of that is something that is much more important,
and it is this: we can be a part of helping children reach their
potential as adults. It is the desire of every parent to see their
child reach full potential. So we can do that by coming together with
this legislation. Think about the joy that is involved in that.
I am pleased to associate myself with the work of Congressman Smith
in this effort and to be a cosponsor of the Autism CARES Act.
Mr. GENE GREEN of Texas. Mr. Speaker, I have no further speakers, and
I yield back the balance of my time.
Mr. PITTS. 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. MESSER. 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.
The SPEAKER pro tempore. The question is on the motion offered by the
gentleman from Pennsylvania (Mr. Pitts) that the House suspend the
rules and pass the bill, H.R. 4631, as amended.
The question was taken; and (two-thirds being in the affirmative) the
rules were suspended and the bill, as amended, was passed.
A motion to reconsider was laid on the table.
