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116th Congress } { Report
HOUSE OF REPRESENTATIVES
1st Session } { 116-177
======================================================================
AUTISM COLLABORATION, ACCOUNTABILITY, RESEARCH, EDUCATION, AND SUPPORT
ACT OF 2019
_______
July 23, 2019.--Committed to the Committee of the Whole House on the
State of the Union and ordered to be printed
_______
Mr. Pallone, from the Committee on Energy and Commerce, submitted the
following
R E P O R T
[To accompany H.R. 1058]
The Committee on Energy and Commerce, to whom was referred
the bill (H.R. 1058) to reauthorize certain provisions of the
Public Health Service Act relating to autism, and for other
purposes, having considered the same, report favorably thereon
with amendments and recommend that the bill as amended do pass.
CONTENTS
Page
I. Purpose and Summary..............................................5
II. Background and Need for the Legislation..........................5
III. Committee Hearings...............................................6
IV. Committee Consideration..........................................6
V. Committee Votes..................................................7
VI. Oversight Findings...............................................7
VII. New Budget Authority, Entitlement Authority, and Tax Expenditures7
VIII.Federal Mandates Statement.......................................7
IX. Statement of General Performance Goals and Objectives............7
X. Duplication of Federal Programs..................................8
XI. Committee Cost Estimate..........................................8
XII. Earmarks, Limited Tax Benefits, and Limited Tariff Benefits......8
XIII.Advisory Committee Statement.....................................8
XIV. Applicability to Legislative Branch..............................8
XV. Section-by-Section Analysis of the Legislation...................8
XVI. Changes in Existing Law Made by the Bill, as Reported............9
The amendments are as follows:
Strike all after the enacting clause and insert the
following:
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
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''.
Amend the title 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.
I. Purpose and Summary
H.R. 1058, the ``Autism Collaboration, Accountability,
Research, Education, and Support Act of 2019'' or the ``Autism
CARES Act of 2019'', was introduced on February 7, 2019, by
Reps. Christopher Smith (R-NJ) and Michael F. Doyle (D-PA) and
referred to the Committee on Energy and Commerce. H.R. 1058
would reauthorize funding for programs at the National
Institutes of Health (NIH), Centers for Disease Control and
Prevention (CDC), and Health Resources and Services
Administration (HRSA) through fiscal year (FY) 2024. The
legislation expands efforts to conduct research, surveillance,
education, detection, and intervention for all individuals with
autism spectrum disorder across their lifespan, regardless of
age. The bill also aims to reduce disparities among individuals
from diverse racial, ethnic, geographic, or linguistic
backgrounds, and directs additional care to rural and
underserved areas. The five-year reauthorization includes
annual authorizations of $23.1 million for developmental
disabilities surveillance and research, $50.599 million for
autism education, early detection, and intervention, and $296
million to carry out the work of the Interagency Autism
Coordinating Committee (IACC) and other programs at the NIH.
II. Background and Need for Legislation
Autism Spectrum Disorder (ASD) is a neurodevelopmental
disorder that is defined by persistent and characteristic
patterns of behavior and difficulties in social communication
and interaction.\1\ As its name suggests, ASD represents a
spectrum of neurodevelopmental conditions. While those
diagnosed with ASD share similar characteristics, individuals
may have different strengths, severity of conditions, and
challenges associated with those conditions.\2\
---------------------------------------------------------------------------
\1\National Institutes of Health, Autism Spectrum Disorder Fact
Sheet (May 14, 2019) (www.ninds.nih.gov/Disorders/Patient-Caregiver-
Education/Fact-Sheets/Autism-SpectrumDisorder-Fact-Sheet).
\2\Id.
---------------------------------------------------------------------------
The number of children diagnosed with ASD has risen
dramatically over the years. For children born in 1992,
approximately one in every 150 children was diagnosed with
ASD.\3\ That number grew to one in every 59 children for
children born in 2006.\4\ It is unclear how much of the
increase is due to broader diagnostic criteria for ASD,
increased efforts to diagnose, or a possible increase in the
number of people with ASD.\5\ As efforts to identify children
with autism have improved, so too has the ability to intervene
and treat children. Early intervention for children with autism
has been associated with a significant positive impact on
developmental outcomes of children.\6\
---------------------------------------------------------------------------
\3\Centers for Disease Control and Prevention, Data & Statistics on
Autism Spectrum Disorder (Apr. 5, 2019) (www.cdc.gov/ncbddd/autism/
data.html).
\4\Id.
\5\Centers for Disease Control and Prevention, Research on Autism
Spectrum Disorder (Apr. 26, 2018) (www.cdc.gov/ncbddd/autism/
research.html).
\6\Lonnie Zwaigenbaum et al., Early Identification and
Interventions for Autism Spectrum Disorder, 136 Pediatrics S1 (Oct.
2015).
---------------------------------------------------------------------------
Recognizing the better understanding of ASD and greater
numbers of diagnosed individuals, Congress enacted the
Combating Autism Act\7\ in 2006, which authorized the expansion
of federal ASD research, surveillance, early detection,
prevention, treatment, education, and disability programs
across several health agencies. The law also re-established the
IACC, a federal advisory committee composed of representatives
of federal agencies and members of the public, including people
with ASD, parents or legal guardians of those with ASD, and
researchers. The purpose of the IACC is to coordinate federal
efforts around research and treatment of autism across federal
agencies, and to provide advice to the Secretary of Health and
Human Services (HHS) on issues related to ASD. The law was
reauthorized in 2011, and again in 2014, after being renamed
the Autism CARES Act.\8\ The Autism CARES Act of 2014 continued
programs related to ASD surveillance, research, education,
early detection, and intervention, and reauthorized the IACC.
Additionally, the Autism CARES Act of 2014 required the
appointment of a National Autism Coordinator within HHS and
authorized funding through the end of fiscal year 2019.
---------------------------------------------------------------------------
\7\Pub. L. No. 109-416.
\8\Pub. L. No. 113-157.
---------------------------------------------------------------------------
III. Committee Hearings
For the purposes of section 103(i) of H. Res. 6 of the
116th Congress, the following hearing was used to develop or
consider H.R. 1058:
The Subcommittee on Health held a legislative hearing on
June 25, 2019, to consider H.R. 1058, the ``Autism
Collaboration, Accountability, Research, Education, and Support
Act of 2019'' or the ``Autism CARES Act of 2019'' and three
other bills, entitled ``Reauthorizing Vital Health Programs for
American Families.'' The Subcommittee received testimony from:
Amy Hewitt, Ph.D., Director, Institute on
Community Integration, University of Minnesota;
Joseph Bocchini, M.D., Professor, Department of
Pediatrics Louisiana State University Health, Shreveport;
Patricia Kunz Howard, Ph.D., RN, President,
Emergency Nurses Association, Director, Emergency Services,
University of Kentucky Healthcare; and
Jill Kagan, Director, ARCH National Respite
Network and Resource Center.
IV. Committee Consideration
H.R. 1058, the ``Autism CARES Act of 2019'' was introduced
in the House on February 7, 2019, by Reps. Christopher Smith
(R-NJ) and Michael F. Doyle (D-PA) and referred to the
Committee on Energy and Commerce. Subsequently, the bill was
referred to the Subcommittee on Health on February 8, 2019.
Following a legislative hearing, the Subcommittee met in open
markup session, pursuant to notice, on July 11, 2019, for
consideration of the bill H.R. 1058. During consideration of
the bill, an amendment was offered by Ms. Eshoo (D-CA),
Chairwoman of the Subcommittee, and it was agreed to by a voice
vote. Subsequently, the Subcommittee on Health agreed to a
motion by Ms. Eshoo that H.R. 1058 be forwarded favorably to
the full Committee on Energy and Commerce, amended, by a voice
vote.
On July 17, 2019, the full Committee met in open markup
session, pursuant to notice, to consider the bill H.R. 1058, as
amended by the Subcommittee. During consideration of the bill,
an amendment in the nature of a substitute was offered by Mr.
Doyle. An amendment to the Doyle substitute was offered by Ms.
Rodgers (R-WA) and adopted by a voice vote. The Doyle amendment
in the nature of a substitute, as amended by the Rodgers
amendment, was then adopted by a voice vote. At the conclusion
of consideration of the bill, the full Committee on Energy and
Commerce agreed to a motion by Mr. Pallone, Chairman of the
Committee, that H.R. 1058 be ordered reported favorably to the
House, amended, by a voice vote, a quorum being present.
V. Committee Votes
Clause 3(b) of rule XIII of the Rules of the House of
Representatives requires the Committee to list each record vote
on the motion to report legislation and amendments thereto. The
Committee advises that there were no record votes taken on H.R.
1058.
VI. Oversight Findings
Pursuant to clause 3(c)(1) of rule XIII and clause 2(b)(1)
of rule X of the Rules of the House of Representatives, the
Committee's oversight findings and recommendations are
reflected in the descriptive portion of the report.
VII. New Budget Authority, Entitlement Authority,
and Tax Expenditures
Pursuant to 3(c)(2) of rule XIII of the Rules of the House
of Representatives, the Committee adopts as its own the
estimate of new budget authority, entitlement authority, or tax
expenditures or revenues contained in the cost estimate
prepared by the Director of the Congressional Budget Office
pursuant to section 402 of the Congressional Budget Act of
1974.
The Committee has requested but not received from the
Director of the Congressional Budget Office a statement as to
whether this bill contains any new budget authority, spending
authority, credit authority, or an increase or decrease in
revenues or tax expenditures.
VIII. Federal Mandates Statement
The Committee adopts as its own the estimate of Federal
mandates prepared by the Director of the Congressional Budget
Office pursuant to section 423 of the Unfunded Mandates Reform
Act.
IX. Statement of General Performance Goals and Objectives
Pursuant to clause 3(c)(4) of rule XIII, the general
performance goal or objective of this legislation is to
reauthorize certain provisions of the Public Health Service Act
relating to autism, and for other purposes.
X. Duplication of Federal Programs
Pursuant to clause 3(c)(5) of rule XIII, no provision of
H.R. 1058 is known to be duplicative of another Federal
program, including any program that was included in a report to
Congress pursuant to section 21 of Public Law 111-139 or the
most recent Catalog of Federal Domestic Assistance.
XI. Committee Cost Estimate
Pursuant to clause 3(d)(1) of rule XIII, the Committee
adopts as its own the cost estimate prepared by the Director of
the Congressional Budget Office pursuant to section 402 of the
Congressional Budget Act of 1974.
XII. Earmarks, Limited Tax Benefits, and
Limited Tariff Benefits
Pursuant to clause 9(e), 9(f), and 9(g) of rule XXI, the
Committee finds that H.R. 1058 contains no earmarks, limited
tax benefits, or limited tariff benefits.
XIII. Advisory Committee Statement
No advisory committees within the meaning of section 5(b)
of the Federal Advisory Committee Act were created by this
legislation.
XIV. Applicability to Legislative Branch
The Committee finds that the legislation does not relate to
the terms and conditions of employment or access to public
services or accommodations within the meaning of section
102(b)(3) of the Congressional Accountability Act.
XV. Section-by-Section Analysis of the Legislation
Section 1. Short title
Section 1 designates that the short title 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 2 amends current law to ensure that research is
aimed at maximizing outcomes for individuals with ASD and that
research includes an examination of services across the
lifespan of individuals with ASD. Additionally, section 2
requires that Centers of Excellence include research in
developmental, behavioral, and clinical psychology in addition
to neurobiology, genetics, genomics, and psychopharmacology.
Finally, section 2 authorizes the NIH Director to 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 otherwise meet scientific criteria for funding.
Sec. 3. Programs relating to autism
Section 3 includes several changes to ensure that autism
programs are inclusive and available in a variety of settings.
First, the section makes several technical and conforming
amendments to ensure that all individuals with autism spectrum
disorder and other disabilities are properly included in
programs relating to autism across their lifespan. Section 3
also allows the HHS Secretary to prioritize grant applications
for developmental-behavioral pediatrician training programs in
rural or underserved areas. It also ensures tribal
organizations are eligible for data collection and centers of
excellence grants.
Additionally, section 3 makes three changes to the
composition of the IACC: first, the section adds
representatives from the Departments of Justice, Veterans
Affairs, and Housing and Urban Development among suggested
officials to include on the IACC; second, the section requires
that of the non-federal members on the IACC, at least three
must be individuals with a diagnosis of ASD, three must be
parents or legal guardians of individuals with ASD, and at
least three must be representatives of leading research
advocacy, and service organizations for individuals with ASD;
and third, this section limits members of the IACC to two four-
year terms.
This section also requires the Secretary to submit
comprehensive reports to Congress on the demographics of
individuals with ASD, approaches to improving health outcomes
for people with ASD, and other recommendations.
Finally, the section includes a five-year authorization of
$23.1 million each year for Developmental Disabilities
Surveillance and Research Program at CDC; $190 million each
year for autism education, early detection, and intervention at
HRSA; and $296 million each year for activities relating to
autism at the NIH.
XVI. Changes in Existing Law Made by the Bill, as Reported
In compliance with clause 3(e) of rule XIII of the Rules of
the House of Representatives, changes in existing law made by
the bill, as reported, are shown as follows (existing law
proposed to be omitted is enclosed in black brackets, new
matter is printed in italic, and existing law in which no
change is proposed is shown in roman):
PUBLIC HEALTH SERVICE ACT
* * * * * * *
TITLE III--GENERAL POWERS AND DUTIES OF PUBLIC HEALTH SERVICE
* * * * * * *
PART R--PROGRAMS RELATING TO AUTISM
SEC. 399AA. DEVELOPMENTAL DISABILITIES SURVEILLANCE AND RESEARCH
PROGRAM.
(a) Autism Spectrum Disorder and Other Developmental
Disabilities.--
(1) In general.--The Secretary, acting through the
Director of the Centers for Disease Control and
Prevention, may award grants or cooperative agreements
to eligible entities for the collection, analysis, and
reporting of State epidemiological data for children
and [adults on autism spectrum disorder] adults with
autism spectrum disorder and other developmental
disabilities. An eligible entity shall assist with the
development and coordination of State autism spectrum
disorder and other developmental disability
surveillance efforts within a region. In making such
awards, the Secretary may provide direct technical
assistance in lieu of cash.
(2) Data standards.--In submitting epidemiological
data to the Secretary pursuant to paragraph (1), an
eligible entity shall report data according to
guidelines prescribed by the Director of the Centers
for Disease Control and Prevention, after consultation
with relevant [State and local public health officials]
State, local, and Tribal public health officials,
private sector developmental disability researchers,
and advocates for individuals with autism spectrum
disorder [or other developmental disabilities] and
other developmental disabilities.
(3) Eligibility.--To be eligible to receive an award
under paragraph (1), an entity shall be a public or
nonprofit private entity (including a health department
of a State or a political subdivision of a State, [a
university, or any other educational institution] a
university, any other educational institution, an
Indian tribe, or a tribal organization), and submit to
the Secretary an application at such time, in such
manner, and containing such information as the
Secretary may require.
(b) Centers of Excellence in Autism Spectrum Disorder
Epidemiology.--
(1) In general.--The Secretary, acting through the
Director of the Centers for Disease Control and
Prevention, shall, subject to the availability of
appropriations, award grants or cooperative agreements
for the establishment or support of regional centers of
excellence in autism spectrum disorder and other
developmental disabilities epidemiology for the purpose
of collecting and analyzing information on the number,
incidence, correlates, and causes of autism spectrum
disorder and other developmental disabilities for
children and adults.
(2) Requirements.--To be eligible to receive a grant
or cooperative agreement under paragraph (1), an entity
shall submit to the Secretary an application containing
such agreements and information as the Secretary may
require, including an agreement that the center to be
established or supported under the grant or cooperative
agreement shall operate in accordance with the
following:
(A) The center will collect, analyze, and
report autism spectrum disorder and other
developmental disability data according to
guidelines prescribed by the Director of the
Centers for Disease Control and Prevention,
after consultation with [relevant State and
local public health officials, private sector
developmental disability researchers, and
advocates for individuals with developmental
disabilities] 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.
(B) The center will develop or extend an area
of special research expertise (including
genetics, epigenetics, and epidemiological
research related to environmental exposures),
immunology, and other relevant research
specialty areas.
(C) The center will identify eligible cases
and controls through its surveillance system
and conduct research into factors which may
cause or increase the risk of autism spectrum
disorder and other developmental disabilities.
(c) Federal Response.--The Secretary shall coordinate the
Federal response to requests for assistance from State health,
mental health, and education department officials regarding
potential or alleged autism spectrum disorder or developmental
disability clusters.
(d) Definitions.--In this part:
(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.
[(1)] (2) Other developmental disabilities.--The term
``other developmental disabilities'' has the meaning
given the term ``developmental disability'' in section
102(8) of the Developmental Disabilities Assistance and
Bill of Rights Act of 2000 (42 U.S.C. 15002(8)).
[(2)] (3) State.--The term ``State'' means each of
the several States, the District of Columbia, the
Commonwealth of Puerto Rico, American Samoa, Guam, the
Commonwealth of the Northern Mariana Islands, the
Virgin Islands, and the Trust Territory of the Pacific
Islands.
(e) Sunset.--This section shall not apply after September 30,
[2019] 2024.
SEC. 399BB. AUTISM EDUCATION, EARLY DETECTION, AND INTERVENTION.
(a) Purpose.--It is the purpose of this section--
(1) to increase awareness, reduce barriers to
screening and diagnosis, promote evidence-based
interventions for [individuals with autism spectrum
disorder or other developmental disabilities]
individuals with autism spectrum disorder and other
developmental disabilities, and train professionals to
utilize valid and reliable screening tools to diagnose
or rule out and provide evidence-based interventions
for [children with autism spectrum disorder and other
developmental disabilities;] individuals with autism
spectrum disorder and other developmental disabilities
across their lifespan; and
(2) to conduct activities under this section with a
focus on an interdisciplinary approach (as defined in
programs developed under section 501(a)(2) of the
Social Security Act) that will also focus on specific
issues for children who are not receiving an early
diagnosis and subsequent interventions.
(b) In General.--The Secretary shall, subject to the
availability of appropriations, establish and evaluate
activities to--
(1) provide culturally competent information and
education on autism spectrum disorder and other
developmental disabilities to increase public awareness
of developmental milestones;
(2) promote research into the development and
validation of reliable screening tools for individuals
with autism spectrum disorder and other developmental
disabilities and disseminate information regarding
those screening tools;
(3) promote early screening of individuals at higher
risk for autism spectrum disorder and other
developmental disabilities as early as practicable,
given evidence-based screening techniques and
interventions;
(4) promote evidence-based screening techniques and
interventions for individuals with autism spectrum
disorder and other developmental disabilities across
their lifespan;
[(4)] (5) increase the number of individuals who are
able to confirm or rule out a diagnosis of autism
spectrum disorder and other developmental disabilities;
[(5)] (6) increase the number of individuals able to
provide evidence-based interventions for individuals
diagnosed with autism spectrum disorder or other
developmental disabilities; and
[(6)] (7) promote the use of evidence-based
interventions for individuals at higher risk for autism
spectrum disorder and other developmental disabilities
as early as practicable.
(c) Information and Education.--
(1) In general.--In carrying out subsection (b)(1),
the Secretary, in collaboration with the Secretary of
Education and the Secretary of Agriculture, shall,
subject to the availability of appropriations, provide
culturally competent information regarding autism
spectrum disorder and other developmental disabilities,
risk factors, characteristics, identification,
diagnosis or rule out, and evidence-based interventions
to meet [the needs of individuals with autism spectrum
disorder or other developmental disabilities and their
families] the needs of individuals with autism spectrum
disorder and other developmental disabilities across
their lifespan and the needs of their families
through--
(A) Federal programs, including--
(i) the Head Start program;
(ii) the Early Start program;
(iii) the Healthy Start program;
(iv) programs under the Child Care
and Development Block Grant Act of
1990;
(v) programs under title XIX of the
Social Security Act (particularly the
Medicaid Early and Periodic Screening,
Diagnosis and Treatment Program);
(vi) the program under title XXI of
the Social Security Act (the State
Children's Health Insurance Program);
(vii) the program under title V of
the Social Security Act (the Maternal
and Child Health Block Grant Program);
(viii) the program under parts B and
C of the Individuals with Disabilities
Education Act;
(ix) the special supplemental
nutrition program for women, infants,
and children established under section
17 of the Child Nutrition Act of 1966
(42 U.S.C. 1786); and
(x) the State grant program under the
Rehabilitation Act of 1973.
(B) State licensed child care facilities; and
(C) other community-based organizations or
points of entry for individuals with autism
spectrum disorder and other developmental
disabilities to receive services.
(2) Lead agency.--
(A) Designation.--As a condition on the
provision of assistance or the conduct of
activities under this section with respect to a
State, the Secretary may require the Governor
of the State--
(i) to designate a public agency as a
lead agency to coordinate the
activities provided for under paragraph
(1) in the State at the State level;
and
(ii) acting through such lead agency,
to make available to individuals and
their family members, guardians,
advocates, or authorized
representatives; providers; and other
appropriate individuals in the State,
comprehensive culturally competent
information about State and local
resources regarding autism spectrum
disorder and other developmental
disabilities, risk factors,
characteristics, identification,
diagnosis or rule out, available
services and supports (which may
include respite care for [caregivers of
individuals with an autism spectrum
disorder] caregivers of individuals
with autism spectrum disorder or other
developmental disabilities), and
evidence-based interventions.
(B) Requirements of agency.--In designating
the lead agency under subparagraph (A)(i), the
Governor shall--
(i) select an agency that has
demonstrated experience and expertise
in--
(I) autism spectrum disorder
and other developmental
disability issues; and
(II) developing,
implementing, conducting, and
administering programs and
delivering education,
information, and referral
services (including technology-
based curriculum-development
services) to individuals with
autism spectrum disorder and
developmental disabilities and
their family members,
guardians, advocates or
authorized representatives,
providers, and other
appropriate individuals locally
and across the State; and
(ii) consider input from individuals
with autism spectrum disorder and
developmental disabilities and their
family members, guardians, advocates or
authorized representatives, providers,
and other appropriate individuals.
(C) Information.--Information under
subparagraph (A)(ii) shall be provided
through--
(i) toll-free telephone numbers;
(ii) Internet websites;
(iii) mailings; or
(iv) such other means as the Governor
may require.
(d) Tools.--
(1) In general.--To promote the use of valid and
reliable screening tools for autism spectrum disorder
and other developmental disabilities, the Secretary
shall develop a curriculum for continuing education to
assist individuals in recognizing the need for valid
and reliable screening tools and the use of such tools.
(2) Collection, storage, coordination, and
availability.--The Secretary, in collaboration with the
Secretary of Education, shall provide for the
collection, storage, coordination, and public
availability of tools described in paragraph (1),
educational materials and other products that are used
by the Federal programs referred to in subsection
(c)(1)(A), as well as--
(A) programs authorized under the
Developmental Disabilities Assistance and Bill
of Rights Act of 2000;
(B) early intervention programs or
interagency coordinating councils authorized
under part C of the Individuals with
Disabilities Education Act; and
(C) children with special health care needs
programs authorized under title V of the Social
Security Act.
(3) Required sharing.--In establishing mechanisms and
entities under this subsection, the Secretary, and the
Secretary of Education, shall ensure the sharing of
tools, materials, and products developed under this
subsection among entities receiving funding under this
section.
(e) Diagnosis.--
(1) Training.--The Secretary, in coordination with
activities conducted under title V of the Social
Security Act, shall, subject to the availability of
appropriations, expand existing interdisciplinary
training opportunities or opportunities to increase the
number of sites able to diagnose or rule out
individuals with autism spectrum disorder or other
developmental disabilities across their lifespan and
ensure that--
(A) competitive grants or cooperative
agreements are awarded to public or nonprofit
agencies, including institutions of higher
education, to expand existing or develop new
maternal and child health interdisciplinary
leadership education in neurodevelopmental and
related disabilities programs (similar to the
programs developed under section 501(a)(2) of
the Social Security Act) in States that do not
have such a program;
(B) trainees under such training programs--
(i) receive an appropriate balance of
academic, clinical, and community
opportunities;
(ii) are culturally competent;
(iii) are ethnically diverse;
(iv) demonstrate a capacity to
evaluate, diagnose or rule out,
develop, and provide evidence-based
interventions to individuals with
autism spectrum disorder and other
developmental disabilities across their
lifespan; and
(v) demonstrate an ability to use a
family-centered approach, which may
include collaborating with research
centers or networks to provide training
for providers of respite care (as
defined in section 2901); and
(C) program sites provide culturally
competent services.
(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)).
[(2)] (3) Technical assistance.--The Secretary may
award one or more grants under this section to provide
technical assistance to the network of
interdisciplinary training programs.
[(3)] (4) Best practices.--The Secretary shall
promote research into additional valid and reliable
tools for shortening the time required to confirm or
rule out a diagnosis of autism spectrum disorder or
other developmental disabilities and detecting
individuals with autism spectrum disorder or other
developmental disabilities at an earlier age.
(f) Intervention.--The Secretary shall promote research,
through 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 autism
spectrum disorder or other developmental disabilities across
the lifespan of such individuals, develop guidelines for those
interventions, and disseminate information related to such
research and guidelines.
(g) Sunset.--This section shall not apply after September 30,
[2019] 2024.
SEC. 399CC. INTERAGENCY AUTISM COORDINATING COMMITTEE.
(a) Establishment.--The Secretary shall establish a
committee, to be known as the ``Interagency Autism Coordinating
Committee'' (in this section referred to as the ``Committee''),
to coordinate all efforts within the Department of Health and
Human Services concerning autism spectrum disorder.
(b) Responsibilities.--In carrying out its duties under this
section, the Committee shall--
(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;
(2) develop a summary of advances in autism spectrum
disorder research related to causes, prevention,
treatment, early screening, diagnosis or rule out,
interventions, including school and community-based
interventions, and access to services and supports for
individuals with autism spectrum disorder across the
lifespan of such individuals;
(3) make recommendations to the Secretary regarding
any appropriate changes to such activities, including
with respect to the strategic plan developed under
paragraph (5);
(4) make recommendations to the Secretary regarding
public participation in decisions relating to autism
spectrum disorder, and the process by which public
feedback can be better integrated into such decisions;
(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 across the
lifespan of such individuals 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.
(c) Membership.--
(1) Federal membership.--The Committee shall be
composed of the following Federal members--
(A) the Director of the Centers for Disease
Control and Prevention;
(B) the Director of the National Institutes
of Health, and the Directors of such national
research institutes of the National Institutes
of Health as the Secretary determines
appropriate;
(C) the heads of such other agencies as the
Secretary determines appropriate, 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; and
(D) representatives of other Federal
Governmental agencies that serve individuals
with autism spectrum disorder such as the
Department of Education, the Department of
Labor, the Department of Justice, the
Department of Veterans Affairs, the Department
of Housing and Urban Development, and the
Department of Defense.
(2) Non-federal members.--Not more than \1/2\, but
not fewer than \1/3\, of the total membership of the
Committee, shall be composed of non-Federal public
members to be appointed by the Secretary, of which--
(A) [at least two such members] at least
three such members shall be individuals with a
diagnosis of autism spectrum disorder;
(B) [at least two such members] at least
three such members shall be parents or legal
guardians of an individual with an autism
spectrum disorder; and
(C) [at least two such members] at least
three such members shall be representatives of
leading research, advocacy, and service
organizations for individuals with autism
spectrum disorder.
(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] one
additional 4-year term.
(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.
(d) Administrative Support; Terms of Service; Other
Provisions.--The following provisions shall apply with respect
to the Committee:
(1) The Committee shall receive necessary and
appropriate administrative support from the Secretary.
(2) The Committee shall meet at the call of the
chairperson or upon the request of the Secretary. The
Committee shall meet not fewer than 2 times each year.
(3) All meetings of the Committee shall be public and
shall include appropriate time periods for questions
and presentations by the public.
(e) Subcommittees; Establishment and Membership.--In carrying
out its functions, the Committee may establish subcommittees
and convene workshops and conferences. Such subcommittees shall
be composed of Committee members and may hold such meetings as
are necessary to enable the subcommittees to carry out their
duties.
(f) Sunset.--This section shall not apply after September 30,
[2019] 2024, and the Committee shall be terminated on such
date.
SEC. 399DD. REPORTS TO CONGRESS.
(a) Progress Report.--
(1) In General.--Not later than 4 years after the
date of enactment of the [Autism CARES Act of 2014]
Autism CARES Act of 2019, the Secretary, in
coordination with the Secretary of Education and the
Secretary of Defense, shall prepare and submit to the
Health, Education, Labor, and Pensions Committee of the
Senate and the Energy and Commerce Committee of the
House of Representatives, and make publicly available,
including through posting on the Internet Web site of
the Department of Health and Human Services, a progress
report on activities related to autism spectrum
disorder and other developmental disabilities.
(2) Contents.--The report submitted under subsection
(a) shall contain--
(A) a description of the progress made in
implementing the provisions of the [Autism
CARES Act of 2014] Autism CARES Act of 2019;
(B) a description of the amounts expended on
the implementation of the amendments made by
the [Autism CARES Act of 2014] Autism CARES Act
of 2019;
(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) information on the average age of
diagnosis for children with autism spectrum
disorder and other disabilities, including how
that age may have changed over the 4-year
period beginning on the date of enactment of
the [Autism CARES Act of 2014] Autism CARES Act
of 2019 and, as appropriate, how this age
varies across population subgroups;
(E) information on the average age for
intervention for individuals diagnosed with
autism spectrum disorder and other
developmental disabilities, including how that
age may have changed over the 4-year period
beginning on the date of enactment of the
[Autism CARES Act of 2014] Autism CARES Act of
2019 and, as appropriate, how this age varies
across population subgroups;
(F) information on the average time between
initial screening and then diagnosis or rule
out for individuals with autism spectrum
disorder or other developmental disabilities,
as well as information on the average time
between diagnosis and evidence-based
intervention for individuals with autism
spectrum disorder or other developmental
disabilities and, as appropriate, on how such
average time varies across population
subgroups;
(G) information on the effectiveness and
outcomes of interventions for individuals
diagnosed with autism spectrum disorder,
including by severity level as practicable, and
other developmental disabilities and how the
[age of the child] age of the individual or
other factors, such as demographic
characteristics, may affect such effectiveness;
(H) information on the effectiveness and
outcomes of innovative and newly developed
intervention strategies for individuals with
autism spectrum disorder or other developmental
disabilities[; and];
(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
(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.
(b) Report on [Young Adults and Transitioning Youth] the
Health and Well-Being of Individuals With Autism Spectrum
Disorder Across Their Lifespan.--
[(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.]
(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.
(2) Contents.--The report submitted under paragraph
(1) shall contain--
[(A) demographic characteristics of youth
transitioning from school-based to community-
based supports;]
(A) demographic factors associated with the
health and well-being of individuals with
autism spectrum disorder;
(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;]
the health and well-being of individuals with
autism spectrum disorder, 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
[(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.]
(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.
SEC. 399EE. AUTHORIZATION OF APPROPRIATIONS.
(a) Developmental Disabilities Surveillance and Research
Program.--To carry out section 399AA, there is authorized to be
appropriated [$22,000,000 for each of fiscal years 2015 through
2019] $23,100,000 for each of fiscal years 2020 through 2024.
(b) Autism Education, Early Detection, and Intervention.--To
carry out section 399BB, there is authorized to be appropriated
[$48,000,000 for each of fiscal years 2015 through 2019]
$50,599,000 for each of fiscal years 2020 through 2024.
(c) Interagency Autism Coordinating Committee; Certain Other
Programs.--To carry out sections 399CC and 409C, [there is
authorized to be appropriated $190,000,000 for each of fiscal
years 2015 through 2019] there are authorized to be
appropriated $296,000,000 for each of fiscal years 2020 through
2024.
* * * * * * *
TITLE IV--NATIONAL RESEARCH INSTITUTES
* * * * * * *
Part B--General Provisions Respecting National Research Institutes
* * * * * * *
Sec. 409C. (a) In General.--
(1) Expansion of activities.--The Director of NIH (in
this section referred to as the ``Director'') shall,
subject to the availability of appropriations, expand,
intensify, and coordinate the activities of the
National Institutes of Health with respect to research
on autism spectrum disorder, including basic and
clinical research in fields including pathology,
developmental neurobiology, genetics, epigenetics,
pharmacology, nutrition, immunology, neuroimmunology,
neurobehavioral development, endocrinology,
gastroenterology, [and toxicology] toxicology, and
interventions to maximize outcomes for individuals with
autism spectrum disorder. [Such research shall
investigate the cause (including possible environmental
causes), diagnosis or rule out, early detection,
prevention, services, supports, intervention, and
treatment of autism spectrum disorder.] 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) Consolidation.--The Director may consolidate
program activities under this section if such
consolidation would improve program efficiencies and
outcomes.
(3) Administration of program; collaboration among
agencies.--The Director shall carry out this section
acting through the Director of the National Institute
of Mental Health and in collaboration with any other
agencies that the Director determines appropriate.
(b) Centers of Excellence.--
(1) In general.--The Director shall under subsection
(a)(1) make awards of grants and contracts to public or
nonprofit private entities to pay all or part of the
cost of planning, establishing, improving, and
providing basic operating support for centers of
excellence regarding research on autism spectrum
disorder.
(2) Research.--Each center under paragraph (1) shall
conduct basic and clinical research into autism
spectrum disorder. Such research should include
investigations into the [cause, diagnosis, early
detection, prevention, control, and treatment of autism
spectrum disorder] causes, diagnosis, early and ongoing
detection, prevention, and treatment of autism spectrum
disorder across the lifespan. The centers, as a group,
shall conduct research including the fields of
developmental [neurobiology, genetics, and
psychopharmacology.] neurobiology, genetics, genomics,
psychopharmacology, developmental psychology,
behavioral psychology, and clinical psychology.
(3) Services for patients.--
(A) In general.--A center under paragraph (1)
may expend amounts provided under such
paragraph to carry out a program to make
individuals aware of opportunities to
participate as subjects in research conducted
by the centers.
(B) Referrals and costs.--A program under
subparagraph (A) may, in accordance with such
criteria as the Director may establish, provide
to the subjects described in such subparagraph,
referrals for health and other services, and
such patient care costs as are required for
research.
(C) Availability and access.--The extent to
which a center can demonstrate availability and
access to clinical services shall be considered
by the Director in decisions about awarding
grants to applicants which meet the scientific
criteria for funding under this section.
(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.
(4) Organization of centers.--Each center under
paragraph (1) shall use the facilities of a single
institution, or be formed from a consortium of
cooperating institutions, meeting such requirements as
may be prescribed by the Director.
(5) Number of centers; duration of support.--
(A) In general.--The Director shall provide
for the establishment of not less than five
centers under paragraph (1).
(B) Duration.--Support for a center
established under paragraph (1) may be provided
under this section for a period of not to
exceed 5 years. Such period may be extended for
one or more additional periods not exceeding 5
years if the operations of such center have
been reviewed by an appropriate technical and
scientific peer review group established by the
Director and if such group has recommended to
the Director that such period should be
extended.
(c) Facilitation of Research.--The Director shall under
subsection (a)(1) provide for a program under which samples of
tissues and genetic materials that are of use in research on
autism spectrum disorder are donated, collected, preserved, and
made available for such research. The program shall be carried
out in accordance with accepted scientific and medical
standards for the donation, collection, and preservation of
such samples.
(d) Public Input.--The Director shall under subsection (a)(1)
provide for means through which the public can obtain
information on the existing and planned programs and activities
of the National Institutes of Health with respect to autism
spectrum disorder and through which the Director can receive
comments from the public regarding such programs and
activities.
* * * * * * *
[all]