89–006 

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 Expenditures 7 

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’’. 


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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’’; 


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(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’’; 


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(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 wellbeing 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 


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1 National Institutes of Health, Autism Spectrum Disorder Fact Sheet (May 14, 2019) 

(www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/AutismSpectrumDisorder-Fact-Sheet). 2 Id. 

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). 

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

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 asVerDate Sep 11 2014 01:01 Jul 28, 2019 Jkt 089006 PO 00000 Frm 00005 Fmt 6659 Sfmt 6602 E:\HR\OC\HR177.XXX HR177

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6Lonnie Zwaigenbaum et al., Early Identification and Interventions for Autism Spectrum Disorder, 136 Pediatrics S1 (Oct. 2015). 7Pub. L. No. 109–416. 

8Pub. L. No. 113–157. 

sociated with a significant positive impact on developmental outcomes of children.6

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. 

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 


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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 proviVerDate Sep 11 2014 01:01 Jul 28, 2019 Jkt 089006 PO 00000 Frm 00007 Fmt 6659 Sfmt 6602 E:\HR\OC\HR177.XXX HR177

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sions 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. 


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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.— 


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(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 øadults 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 øState 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 øor 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, øa 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 EP- IDEMIOLOGY.— (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 ørelevant 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 


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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. 

ø(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)). 

ø(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, 

ø2019¿ 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 øindividuals 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 øchildren 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; 


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(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; 

ø(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; 

ø(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 

ø(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 

øthe 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 


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(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 øcaregivers 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.— 


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(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 AVAIL- ABILITY.—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 


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(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)). 

ø(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. 

ø(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, 

ø2019¿ 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); 


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(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) øat least two such members¿ at least three such 

members shall be individuals with a diagnosis of autism 

spectrum disorder; 

(B) øat 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) øat least two such members¿ at least three such 

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vocacy, 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 øone 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, 

ø2019¿ 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 øAutism 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 øAutism 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 øAutism 

CARES Act of 2014¿ Autism CARES Act of 2019; 


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(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 øAutism 

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 øAutism 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 øage 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 disabilitiesø; 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)ø.¿; and 

(J) information on how States use home- and communitybased 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 øYOUNG ADULTS AND TRANSITIONING YOUTH¿ THE

HEALTH AND WELL-BEING OF INDIVIDUALS WITH AUTISM SPECTRUM

DISORDER ACROSS THEIR LIFESPAN.— ø(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 

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ing 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 schoolbased 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— 

ø(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 

øyoung 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; 

ø(C) proposals on establishing best practices guidelines 

to ensure— 

ø(i) interdisciplinary coordination between all relevant service providers receiving Federal funding; 

ø(ii) coordination with transitioning youth and the 

family of such transitioning youth; and 

ø(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); 

ø(D) comprehensive approaches to transitioning from existing school-based services to those services available during adulthood, including— 

ø(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; 

ø(ii) community-based behavioral supports and 

interventions; 

ø(iii) community-based integrated residential services, housing, and transportation; 

ø(iv) nutrition, health and wellness, recreational, 

and social activities; 


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ø(v) personal safety services for individuals with autism spectrum disorder related to public safety agencies or the criminal justice system; and 

ø(vi) evidence-based approaches for coordination of 

resources and services once individuals have aged out 

of post-secondary education; and 

ø(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— 

ø(i) increasing the effectiveness of programs that 

provide transition services; 

ø(ii) increasing the ability of the relevant service 

providers described in subparagraph (C) to provide 

supports and services to underserved populations and 

regions; 

ø(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; 

ø(iv) ensuring access to all services necessary to 

transitioning youth of all capabilities; and 

ø(v) encouraging transitioning youth to utilize all 

available transition services to maximize independence, equal opportunity, full participation, and selfsufficiency.¿ 

(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. 


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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 ø$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 

ø$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, øthere 

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, øand toxicology¿ toxicology, 

and interventions to maximize outcomes for individuals with 

autism spectrum disorder. øSuch 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) 

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vate 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 øcause, 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 

øneurobiology, 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. 


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(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. 

* * * * * * * 

Æ 


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