Attachment A_Autism CARES Act of 2014 and Autism CARES Act of 2019

Attachment A.
Autism CARES Act of 2014 and Autism CARES Act of 2019

113TH CONGRESS
" HOUSE OF REPRESENTATIVES
2d Session

!

REPORT
113–490

AUTISM COLLABORATION, ACCOUNTABILITY, RESEARCH,
EDUCATION, AND SUPPORT ACT OF 2014

JUNE 23, 2014.—Committed to the Committee of the Whole House on the State of
the Union and ordered to be printed

Mr. UPTON, from the Committee on Energy and Commerce,
submitted the following

R E P O R T
[To accompany H.R. 4631]
[Including cost estimate of the Congressional Budget Office]

The Committee on Energy and Commerce, to whom was referred
the bill (H.R. 4631) 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 an amendment and recommend that the bill as amended do pass.
CONTENTS
Page

Purpose and Summary ............................................................................................
Background and Need for Legislation ....................................................................
Hearings ...................................................................................................................
Committee Consideration ........................................................................................
Committee Votes ......................................................................................................
Committee Oversight Findings ...............................................................................
Statement of General Performance Goals and Objectives ....................................
New Budget Authority, Entitlement Authority, and Tax Expenditures .............
Earmark, Limited Tax Benefits, and Limited Tariff Benefits .............................
Committee Cost Estimate .......................................................................................
Congressional Budget Office Estimate ...................................................................
Federal Mandates Statement .................................................................................
Duplication of Federal Programs ............................................................................
Disclosure of Directed Rule Makings .....................................................................
Advisory Committee Statement ..............................................................................
Applicability to Legislative Branch ........................................................................
Section-by-Section Analysis of the Legislation ......................................................
Changes in Existing Law Made by the Bill, as Reported .....................................

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The amendment is as follows:
Strike all after the enacting clause and insert the following:
39–006

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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 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’’.

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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 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 and services and supports for individuals with an autism spectrum disorder and the families of such individuals, which shall include—
‘‘(A) proposed budgetary requirements; and

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‘‘(B) recommendations to ensure that autism spectrum disorder research,
services, and support activities 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
power 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’’.

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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.—’’;

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(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
populations 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
populations subgroups’’;
(F) in subparagraph (F) (as so redesignated), by inserting ‘‘and, as appropriate, on how such average time varies across populations 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, 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

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‘‘(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 schoolbased 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’’.

PURPOSE

AND

SUMMARY

H.R. 4631, ‘‘Autism Collaboration, Accountability, Research, Education, and Support Act of 2014’’ or the ‘‘Autism CARES Act of
2014’’ was introduced on May 9, 2014 by Rep. Chris Smith (R-NJ)
and Rep. Michael Doyle (D–PA) and referred to the Committee on
Energy and Commerce.

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BACKGROUND

AND

NEED

FOR

LEGISLATION

Autism spectrum disorder (ASD) is a range of complex
neurodevelopment disorders, characterized by social impairments,
communication difficulties, and repetitive patterns of behavior. The
disorder can range in severity from milder forms known as
Asperger syndrome to more severe forms. The Centers for Disease
Control and Prevention (CDC) estimates that about 1 in 68 children have been identified with ASD. Boys are five times more likely to have ASD. This is a tenfold increase in prevalence in ASD

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over the last 40 years, primarily due to better awareness, surveillance, and diagnosis.1
Although the cause of ASD is unclear, science has determined
that genetics and environment are factors. Researchers have identified a number of genes associated with the disorder. Studies of people with ASD have found irregularities in several regions of the
brain along with abnormal levels of brain chemicals that could affect normal brain development during gestation. This research is
preliminary, and further study is needed.2
In 2000, Congress passed the Children’s Health Act to address
the growing need for research and resources directed toward ASD
and other developmental disorders. Activities included surveillance,
education, and research. It also established the Interagency Autism
Coordinating Committee (IACC). In 2006, Congress passed the
Combating Autism Act (CAA) that reauthorized provisions in the
Children’s Health Act related to ASD and required the development of an overall strategic plan. In 2011, CAA was reauthorized
again to continue research at the National Institutes of Health
(NIH), surveillance at the CDC, and education and early detection
activities at the Health Resources and Services Administration
(HRSA). The IACC also was reauthorized. It expires in 2014.
The Autism CARES Act 2014 would reauthorize the Combating
Autism Reauthorization Act (CARA) of 2011. The bill would continue current Federal activities related to autism, including biomedical research, surveillance, and education. The bill would require the Secretary to appoint an existing Federal official to oversee the Federal activities related to ASD, including the strategic
plan, and ensure that activities are not unnecessarily duplicative.
In addition, within 2 years, the Secretary would prepare a report
that studies the needs of autistic youth transitioning into adulthood. The IACC would be reauthorized and include requirements
for Federal and non-Federal membership.
In implementing the programmatic and research initiatives funded by this Act, the Committee strongly encourages Federal agencies
to pay particular attention to the need to focus on early diagnosis
and intervention in children ages 5 or younger. With new advances
in scientific research relating to autism, it is important that Federal agencies are aware of and taking into account that the average
age of diagnosis could drop, in the very near term, from ages 4 and
5 to toddlers and younger. The Committee is aware that there is
evidence-based science that will make it possible to identify signs
of autism present in the first year or two of life, thereby opening
a window for even earlier diagnosis and intervention in the future.
The Committee is aware that such scientific progress could create
significant societal and economic benefits if intervention and treatment can start earlier than previously thought possible. This could
improve dramatically the quality of life for children with autism,
permit them to have more fulfilling and productive lives, and could
lower substantially the costs associated with their education and
health care over their lifetimes.
The Committee appreciates the diverse makeup of IACC, and
would like the panel to continue to represent the diversity within
1http://www.cdc.gov/ncbddd/autism/index.html.
2http://www.ninds.nih.gov/disorders/autism/detaillautism.htm.

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the autism community and remain a place where all viewpoints
can be heard. Current members include parents and legal guardians, individuals with an autism diagnosis, advocacy organizations,
and medical researchers. The Committee believes that these groups
should continue to be represented. After previous reauthorizations
of the Combating Autism Act, IACC has been dissolved and reconstituted. The Committee believes that this is unproductive and disruptive, and would like IACC to remain active, as the changes in
this bill are instituted to ensure continuity.
HEARINGS
The Committee on Energy and Commerce has not held hearings
on the legislation.
COMMITTEE CONSIDERATION
On May 28, 2014, the Subcommittee on Health met in open
markup session and forwarded H.R. 4631 to the full Committee, as
amended, by a voice vote. On June 10, 2014, the full Committee
met in open markup session and ordered H.R. 4631 reported to the
House, as amended, by voice vote.
COMMITTEE VOTES
Clause 3(b) of rule XIII of the Rules of the House of Representatives requires the Committee to list the record votes on the motion
to report legislation and amendments thereto. There were no
record votes taken in connection with ordering H.R. 4631 reported.
A motion by Mr. Upton to order H.R. 4631 reported to the House,
with amendment, was agreed to by a voice vote.
COMMITTEE OVERSIGHT FINDINGS
Pursuant to clause 3(c)(1) of rule XIII of the Rules of the House
of Representatives, the Committee has not held hearings on this
legislation.
STATEMENT

OF

GENERAL PERFORMANCE GOALS

AND

OBJECTIVES

H.R. 4631 reauthorizes Federal activities related to ASD and provides direction to the relevant agencies to improve these activities.
NEW BUDGET AUTHORITY, ENTITLEMENT AUTHORITY,
EXPENDITURES

AND

TAX

In compliance with clause 3(c)(2) of rule XIII of the Rules of the
House of Representatives, the Committee finds that H.R. 4631,
would result in no new or increased budget authority, entitlement
authority, or tax expenditures or revenues.

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EARMARK, LIMITED TAX BENEFITS,

AND

LIMITED TARIFF BENEFITS

In compliance with clause 9(e), 9(f), and 9(g) of rule XXI of the
Rules of the House of Representatives, the Committee finds that
H.R. 4631 contains no earmarks, limited tax benefits, or limited
tariff benefits.

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COMMITTEE COST ESTIMATE
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.
CONGRESSIONAL BUDGET OFFICE ESTIMATE
Pursuant to clause 3(c)(3) of rule XIII of the Rules of the House
of Representatives, the following is the cost estimate provided by
the Congressional Budget Office pursuant to section 402 of the
Congressional Budget Act of 1974:
U.S. CONGRESS,
CONGRESSIONAL BUDGET OFFICE,
Washington, DC, June 20, 2014.

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Hon. FRED UPTON,
Chairman, Committee on Energy and Commerce,
House of Representatives, Washington, DC.
DEAR MR. CHAIRMAN: The Congressional Budget Office has prepared the enclosed cost estimate for H.R. 4631, the Autism Collaboration, Accountability, Research, Education, and Support Act of
2014. This estimate supersedes CBO’s original estimate that was
transmitted on June 18, 2014. It corrects an error in stating the
bill’s authorization amount of $190 million a year for the National
Institutes of Health. There is no change to CBO’s estimate of outlays under the bill.
If you wish further details on this estimate, we will be pleased
to provide them. The CBO staff contact is Lisa Ramirez-Branum.
Sincerely,
DOUGLAS W. ELMENDORF.
Enclosure.
H.R. 4631—Autism Collaboration, Accountability, Research, Education, and Support Act of 2014
Summary: H.R. 4631 would amend the Public Health Service Act
to reauthorize research, surveillance, and education activities related to autism spectrum disorders (autism) conducted by various
agencies within the Department of Health and Human Services
(HHS). Those activities are conducted by the Centers for Disease
Control and Prevention (CDC), the Health Resources and Services
Administration (HRSA), and the National Institutes of Health
(NIH).
The bill would authorize appropriations for autism activities at
HHS of $260 million in 2015 and $1.3 billion over the 2015–2019
period. CBO estimates that implementing H.R. 4631 would cost
$1.1 billion over the 2015–2019 period, assuming appropriation of
the authorized amounts. Pay-as-you-go procedures do not apply to
this legislation because it would not affect direct spending or revenues.
The bill contains no intergovernmental or private-sector mandates as defined in the Unfunded Mandates Reform Act (UMRA).
Estimated cost to the Federal Government: The estimated budgetary effect of H.R. 4631 is shown in the following table. The costs
of this legislation fall within budget function 550 (health).

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By fiscal year, in million of dollars—
2015

2016

2017

2018

2019

2015–
2019

CHANGES IN SPENDING SUBJECT TO APPROPRIATION
CDC:
Authorization Level ..............................................................
Estimated Outlays ...............................................................
HRSA:
Authorization Level ..............................................................
Estimated Outlays ...............................................................
NIH:
Authorization Level ..............................................................
Estimated Outlays ...............................................................
Total Changes:
Authorization Level .....................................................
Estimated Outlays ......................................................

22
10

22
20

22
20

22
20

22
20

110
90

48
25

48
45

48
45

48
50

48
50

240
215

190
50

190
150

190
180

190
185

190
190

950
755

260
85

260
215

260
245

260
255

260
260

1,300
1,060

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Note: CDC = Centers for Disease Control and Prevention; HRSA = Health Resources and Services Administration; NIH = National Institutes
of Health.

Basis of estimate: The CDC, HRSA, and NIH administer programs that support activities to prevent, diagnose, and treat autism. The Congress appropriated $259 million for such activities in
2014; however, authority to operate those programs expires at the
end of fiscal year 2014. H.R. 4631 would reauthorize funding for
these activities through 2019 at a level of $260 million per year.
For this estimate, CBO assumes that H.R. 4631 will be enacted
near the end of fiscal year 2014 and that the authorized amounts
will be appropriated near the beginning of each fiscal year. The estimate of outlays is based on historical spending patterns for CDC,
HRSA, and NIH activities.
The CDC currently administers several surveillance and research
programs directed at determining the prevalence of autism and the
risk factors for developing autism, as well as raising awareness of
the signs of autism for families, health care providers, and
childcare educators. The Congress appropriated approximately $22
million for those activities in fiscal year 2014. The bill would authorize the appropriation of $22 million annually over the 2015–
2019 period for such programs. CBO estimates that implementing
those provisions would cost $90 million over the 2015–2019 period.
HRSA currently operates several programs to train health care
providers in the delivery of care to children with autism and other
developmental disabilities. The Congress appropriated approximately $47 million for those activities in fiscal year 2014. The legislation would authorize the appropriation of $48 million for each
of fiscal years 2015 through 2019 for HRSA to continue such activities. CBO estimates that implementing those provisions would cost
$215 million over the 2015–2019 period.
H.R. 4631 also would reauthorize programs and activities carried
out by NIH to advance autism research and treatment including
the Autism Centers of Excellence program. The Congress appropriated $190 million for those activities in fiscal year 2014. The bill
would authorize the appropriation of $190 million for each of fiscal
years 2015 through 2019 for NIH to continue such activities. CBO
estimates that implementing those provisions would cost $755 million over the 2015–2019 period.
Pay-As-You-Go considerations: None.
Intergovernmental and private-sector impact: H.R. 4631 contains
no intergovernmental or private-sector mandates as defined in

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UMRA. The bill would benefit state, local, and tribal governments
that receive grants related to autism spectrum disorders.
Previous CBO estimate: On June 18, 2014, CBO transmitted a
cost estimate for H.R. 4631, the Autism Collaboration, Accountability, Research, Education, and Support Act of 2014, as ordered
reported by the House Committee on Energy and Commerce on
June 10, 2014. That previous estimate incorrectly stated that the
legislation authorized the appropriation of $191 million a year for
each of fiscal years 2015 through 2019 for NIH to carry out autismrelated activities. This revised estimate corrects the amounts authorized to be equal to $190 million a year for each of fiscal years
2015 through 2019. There is no change to CBO’s estimate of outlays under the bill.
Estimate prepared by: Federal costs: Lisa Ramirez-Branum and
Santiago Vallinas; Impact on state, local, and tribal governments:
J’nell L. Blanco; Impact on the private sector: Sam Trachtman.
Estimate approved by: Holly Harvey, Deputy Assistant Director
for Budget Analysis.
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.
DUPLICATION

OF

FEDERAL PROGRAMS

No provision of H.R. 4631 establishes or reauthorizes a program
of the Federal Government known to be duplicative of another Federal program, a program that was included in any report from the
Government Accountability Office to Congress pursuant to section
21 of Public Law 111–139, or a program related to a program identified in the most recent Catalog of Federal Domestic Assistance.
DISCLOSURE

OF

DIRECTED RULE MAKINGS

The Committee estimates that enacting H.R. 4631 specifically directs to be completed 0 rule makings within the meaning of 5
U.S.C. 551.
ADVISORY COMMITTEE STATEMENT
No advisory committees within the meaning of section 5(b) of the
Federal Advisory Committee Act were created by this legislation.
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.

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SECTION-BY-SECTION ANALYSIS

OF THE

LEGISLATION

Section 1. Short title
Section 1 provides the short title of ‘‘Autism Collaboration, Accountability, Research, Education, and Support Act of 2014’’ or the
‘‘Autism CARES Act of 2014.’’

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Section 2. National Autism Spectrum Disorder Initiative
Section 2 would require the Secretary to appoint an existing official to oversee the activities related to autism including the strategic plan and ensure the elimination of unnecessary duplication in
activities.
Section 3. Research program
Section 3 would require the CDC to collect data on both children
and adults with autism.
Section 4. Autism intervention
Section 4 would require that activities related to autism early
education, early detection, and intervention be culturally competent. The bill also would provide for the identification of evidence-based practices and the training of respite caregivers.
Section 5. Interagency Autism Coordinating Committee
Section 5 would require the IACC, as part of its responsibilities,
to include school and community-based interventions in the summary of advances; monitor research, services, and support activities
across Federal departments and agencies; and include a plan for
the conduct of and support for ASD research and services and supports for individuals with ASD and their families in the strategic
plan. Federal members of the IACC can include the Department of
Defense, the Department of Education, the Administration for
Community Living, the Administration for Children and Families,
the Centers for Medicare and Medicaid Services, the Food and
Drug Administration, and the Health Resources and Services Administration. Non-Federal members would include at least 2 members from each of the following groups: parents, persons with ASD,
and advocacy groups.
Section 6. Reports
Section 6 would extend the time frame for the progress report
from 2 to 4 years and coordinate with the Secretary of Defense in
the preparation of the report. The report would include data on the
incidence and prevalence of ASD among children and adults and
any changes over time and a description of actions made on the implementation of the strategic plan. The section would require the
Secretary to prepare and submit a report on the needs and challenges of autistic youth transitioning from school-based services to
adult, community-based services.
Section 7. Authorization of appropriations
Section 7 would reauthorize CDC activities at $22 million for
each of FY 2015 through FY 2019; HRSA activities at $48 million
for each of FY 2015 through FY 2019; and NIH/IACC activities at
$190 million for each of FY 2015 through FY 2019.

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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 omit-

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ted is enclosed in black brackets, new matter is printed in italic,
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 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.
*
*
*
*
*
*
*
(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 øestablishment of regional centers
of excellence¿ 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 øcenter to be established¿ center to be established or supported under the grant or cooperative agreement shall operate in accordance with the following:
(A) * * *
*
*
*
*
*
*
*
(e) SUNSET.—This section shall not apply after September 30,
ø2014¿ 2019.

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SEC. 399BB. AUTISM EDUCATION, EARLY DETECTION, AND INTERVENTION.

(a) * * *
(b) IN GENERAL.—The Secretary shall, subject to the availability
of appropriations, establish and evaluate activities to—

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(1) provide culturally competent information and education
on autism spectrum disorder and other developmental disabilities to increase public awareness of developmental milestones;
*
*
*
*
*
*
*
(c) INFORMATION AND EDUCATION.—
(1) * * *
(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) * * *
(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), and evidence-based interventions.
*
*
*
*
*
*
*
(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 and ensure that—
(A) * * *
(B) trainees under such training programs—
(i) * * *

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*

*
*
*
*
*
*
(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

*
*
*
*
*
*
*
(f) INTERVENTION.—The Secretary shall promote research,
through øgrants or contracts, to determine the evidence-based practices for interventions for individuals with¿ 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, develop
guidelines for those interventions, and disseminate information related to such research and guidelines.
(g) SUNSET.—This section shall not apply after September 30,
ø2014¿ 2019.

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SEC. 399CC. INTERAGENCY AUTISM COORDINATING COMMITTEE.

(a) * * *
(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 Federal departments and agencies, including coordination of Federal activities with respect to autism spectrum disorder;
ø(1)¿ (2) develop øand annually update¿ a summary of advances in autism spectrum disorder research related to causes,
prevention, treatment, early screening, diagnosis or rule out,
øintervention¿ interventions, including school and communitybased interventions, and access to services and supports for individuals with autism spectrum disorder;
ø(2) monitor Federal activities with respect to autism spectrum disorder;¿
(3) make recommendations to the Secretary regarding any
appropriate changes to such activities, including ørecommendations to the Director of NIH¿ 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;
ø(5) develop and annually update a strategic plan for the
conduct of, and support for, autism spectrum disorder research,
including proposed budgetary requirements; and
ø(6) submit to the Congress such strategic plan and any updates to such plan.¿
(5) develop a strategic plan for the conduct of, and support
for, autism spectrum disorder research and 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, services, and support activities 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.—
ø(1) IN GENERAL.—The Committee shall be composed of—¿
(1) FEDERAL MEMBERSHIP.—The Committee shall be composed of the following Federal members—
(A) * * *

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*

*
*
*
*
*
*
(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

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15
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 Educationø; and¿ and the Department of Defense.
ø(E) the additional members appointed under paragraph
(2).¿
(2) øADDITIONAL¿ NON-FEDERAL MEMBERS.— øNot fewer
than 6 members of the Committee, or 1/3 of the total membership of the Committee, whichever is greater¿ 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 øone such member shall be an individual¿
two such members shall be individuals with a diagnosis of
autism spectrum disorder;
(B) at least øone such member shall be a parent or legal
guardian¿ two such members shall be parents or legal
guardians of an individual with an autism spectrum disorder; and
(C) at least øone such member shall be a representative¿
two 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.
(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 power 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) * * *
ø(2) Members of the Committee appointed under subsection
(c)(2) shall serve for a term of 4 years, and may be reappointed
for one or more additional 4 year term. 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 taken office.¿
ø(3)¿ (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.
ø(4)¿ (3) All meetings of the Committee shall be public and
shall include appropriate time periods for questions and presentations by the public.
*

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16
(f) SUNSET.—This section shall not apply after September 30,
ø2014¿ 2019, and the Committee shall be terminated on such date.

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SEC. 399DD. øREPORT¿ REPORTS TO CONGRESS.
(a) PROGRESS REPORT.—
ø(a)¿ (1) IN GENERAL.—Not later than

ø2 years after the
date of enactment of the Combating Autism Reauthorization
Act of 2011¿ 4 years after the date of enactment of the Autism
CARES Act of 2014, 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.
ø(b)¿ (2) CONTENTS.—The report submitted under subsection
(a) shall contain—
ø(1)¿ (A) a description of the progress made in implementing the provisions of the øCombating Autism Act of
2006¿ Autism CARES Act of 2014;
ø(2)¿ (B) a description of the amounts expended on the
implementation of the øparticular provisions of Combating
Autism Act of 2006¿ amendments made by the Autism
CARES Act of 2014;
ø(3) information on the incidence of autism spectrum
disorder and trend data of such incidence since the date of
enactment of the Combating Autism Act of 2006;¿
(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;
ø(4)¿ (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
ø6-year period beginning on the date of enactment of the
Combating Autism Act of 2006¿ 4-year period beginning on
the date of enactment of the Autism CARES Act of 2014
and, as appropriate, how this age varies across populations
subgroups;
ø(5)¿ (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 ø6-year period beginning
on the date of enactment of the Combating Autism Act of
2006¿ 4-year period beginning on the date of enactment of
the Autism CARES Act of 2014 and, as appropriate, how
this age varies across populations subgroups;
ø(6)¿ (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 indi-

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17
viduals with autism spectrum disorder or other developmental disabilities and, as appropriate, on how such average time varies across populations subgroups;
ø(7)¿ (G) information on the effectiveness and outcomes
of interventions for individuals diagnosed with autism
spectrum disorder, øincluding by various subtypes,¿ including by severity level as practicable, and other developmental disabilities and how the age of the øchild may¿
child or other factors, such as demographic characteristics,
may affect such effectiveness;
ø(8)¿ (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
ø(9) information on services and supports provided to individuals with autism spectrum disorder and other developmental disabilities who have reached the age of majority
(as defined for purposes of section 615(m) of the Individuals with Disabilities Education Act (20 U.S.C. 1415(m)).¿
(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).
(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, 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
(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);

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(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.

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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 øfiscal years 2012 through
2014¿ fiscal years 2015 through 2019.
(b) AUTISM EDUCATION, EARLY DETECTION, AND INTERVENTION.—
To carry out section 399BB, there is authorized to be appropriated
$48,000,000 for each of øfiscal years 2011 through 2014¿ fiscal
years 2015 through 2019.
(c) INTERAGENCY AUTISM COORDINATING COMMITTEE; CERTAIN
OTHER PROGRAMS.—To carry out sections 399CC, 404H, and 409C,
there is authorized to be appropriated ø$161,000,000 for each of fis-

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cal years 2011 through 2014¿ $190,000,000 for each of fiscal years
2015 through 2019.
*

*

*

*

*

*

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H. R. 1058

One Hundred Sixteenth Congress
of the
United States of America
AT T H E F I R S T S E S S I O N
Begun and held at the City of Washington on Thursday,
the third day of January, two thousand and nineteen

An Act
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.

Be it enacted by the Senate and House of Representatives of
the United States of America in Congress assembled,
SECTION 1. SHORT TITLE.

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

2.

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

Section 409C of the Public Health Service Act (42 U.S.C. 284g)
is amended—
(1) in subsection (a)(1)—
(A) in the first sentence, by striking ‘‘and toxicology’’
and inserting ‘‘toxicology, and interventions to maximize
outcomes for individuals with autism spectrum disorder’’;
and
(B) by striking the second sentence and inserting the
following: ‘‘Such research shall investigate the causes
(including possible environmental causes), diagnosis or
ruling out, early and ongoing detection, prevention, services
across the lifespan, supports, intervention, and treatment
of autism spectrum disorder, including dissemination and
implementation of clinical care, supports, interventions,
and treatments.’’;
(2) in subsection (b)—
(A) in paragraph (2)—
(i) in the second sentence, by striking ‘‘cause’’ and
all that follows through ‘‘disorder’’ and inserting
‘‘causes, diagnosis, early and ongoing detection, prevention, and treatment of autism spectrum disorder across
the lifespan’’; and
(ii) in the third sentence, by striking ‘‘neurobiology’’
and all that follows through the period and inserting
‘‘neurobiology,
genetics,
genomics,
psychopharmacology,
developmental
psychology,
behavioral psychology, and clinical psychology.’’; and
(B) in paragraph (3), by adding at the end the following:
‘‘(D) REDUCING DISPARITIES.—The Director may consider, as appropriate, the extent to which a center can

H. R. 1058—2
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’’;

H. R. 1058—3
(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

H. R. 1058—4
(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

H. R. 1058—5
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

H. R. 1058—6
through 2019’’ and inserting ‘‘there are authorized to be appropriated $296,000,000 for each of fiscal years 2020 through
2024’’.

Speaker of the House of Representatives.

Vice President of the United States and
President of the Senate.