[House Report 116-177]
[From the U.S. Government Publishing Office]


116th Congress    }                                    {       Report
                        HOUSE OF REPRESENTATIVES
 1st Session      }                                    {      116-177

======================================================================



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

                                _______
                                

 July 23, 2019.--Committed to the Committee of the Whole House on the 
              State of the Union and ordered to be printed

                                _______
                                

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

                              R E P O R T

                        [To accompany H.R. 1058]

    The Committee on Energy and Commerce, to whom was referred 
the bill (H.R. 1058) to reauthorize certain provisions of the 
Public Health Service Act relating to autism, and for other 
purposes, having considered the same, report favorably thereon 
with amendments and recommend that the bill as amended do pass.

                                CONTENTS

                                                                   Page
  I. Purpose and Summary..............................................5
 II. Background and Need for the Legislation..........................5
III. Committee Hearings...............................................6
 IV. Committee Consideration..........................................6
  V. Committee Votes..................................................7
 VI. Oversight Findings...............................................7
VII. New Budget Authority, Entitlement Authority, and Tax Expenditures7
VIII.Federal Mandates Statement.......................................7

 IX. Statement of General Performance Goals and Objectives............7
  X. Duplication of Federal Programs..................................8
 XI. Committee Cost Estimate..........................................8
XII. Earmarks, Limited Tax Benefits, and Limited Tariff Benefits......8
XIII.Advisory Committee Statement.....................................8

XIV. Applicability to Legislative Branch..............................8
 XV. Section-by-Section Analysis of the Legislation...................8
XVI. Changes in Existing Law Made by the Bill, as Reported............9

    The amendments are as follows:
  Strike all after the enacting clause and insert the 
following:

SECTION 1. SHORT TITLE.

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

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

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

SEC. 3. PROGRAMS RELATING TO AUTISM.

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

                         I. Purpose and Summary

    H.R. 1058, the ``Autism Collaboration, Accountability, 
Research, Education, and Support Act of 2019'' or the ``Autism 
CARES Act of 2019'', was introduced on February 7, 2019, by 
Reps. Christopher Smith (R-NJ) and Michael F. Doyle (D-PA) and 
referred to the Committee on Energy and Commerce. H.R. 1058 
would reauthorize funding for programs at the National 
Institutes of Health (NIH), Centers for Disease Control and 
Prevention (CDC), and Health Resources and Services 
Administration (HRSA) through fiscal year (FY) 2024. The 
legislation expands efforts to conduct research, surveillance, 
education, detection, and intervention for all individuals with 
autism spectrum disorder across their lifespan, regardless of 
age. The bill also aims to reduce disparities among individuals 
from diverse racial, ethnic, geographic, or linguistic 
backgrounds, and directs additional care to rural and 
underserved areas. The five-year reauthorization includes 
annual authorizations of $23.1 million for developmental 
disabilities surveillance and research, $50.599 million for 
autism education, early detection, and intervention, and $296 
million to carry out the work of the Interagency Autism 
Coordinating Committee (IACC) and other programs at the NIH.

                II. Background and Need for Legislation

    Autism Spectrum Disorder (ASD) is a neurodevelopmental 
disorder that is defined by persistent and characteristic 
patterns of behavior and difficulties in social communication 
and interaction.\1\ As its name suggests, ASD represents a 
spectrum of neurodevelopmental conditions. While those 
diagnosed with ASD share similar characteristics, individuals 
may have different strengths, severity of conditions, and 
challenges associated with those conditions.\2\
---------------------------------------------------------------------------
    \1\National Institutes of Health, Autism Spectrum Disorder Fact 
Sheet (May 14, 2019) (www.ninds.nih.gov/Disorders/Patient-Caregiver-
Education/Fact-Sheets/Autism-SpectrumDisorder-Fact-Sheet).
    \2\Id.
---------------------------------------------------------------------------
    The number of children diagnosed with ASD has risen 
dramatically over the years. For children born in 1992, 
approximately one in every 150 children was diagnosed with 
ASD.\3\ That number grew to one in every 59 children for 
children born in 2006.\4\ It is unclear how much of the 
increase is due to broader diagnostic criteria for ASD, 
increased efforts to diagnose, or a possible increase in the 
number of people with ASD.\5\ As efforts to identify children 
with autism have improved, so too has the ability to intervene 
and treat children. Early intervention for children with autism 
has been associated with a significant positive impact on 
developmental outcomes of children.\6\
---------------------------------------------------------------------------
    \3\Centers for Disease Control and Prevention, Data & Statistics on 
Autism Spectrum Disorder (Apr. 5, 2019) (www.cdc.gov/ncbddd/autism/
data.html).
    \4\Id.
    \5\Centers for Disease Control and Prevention, Research on Autism 
Spectrum Disorder (Apr. 26, 2018) (www.cdc.gov/ncbddd/autism/
research.html).
    \6\Lonnie Zwaigenbaum et al., Early Identification and 
Interventions for Autism Spectrum Disorder, 136 Pediatrics S1 (Oct. 
2015).
---------------------------------------------------------------------------
    Recognizing the better understanding of ASD and greater 
numbers of diagnosed individuals, Congress enacted the 
Combating Autism Act\7\ in 2006, which authorized the expansion 
of federal ASD research, surveillance, early detection, 
prevention, treatment, education, and disability programs 
across several health agencies. The law also re-established the 
IACC, a federal advisory committee composed of representatives 
of federal agencies and members of the public, including people 
with ASD, parents or legal guardians of those with ASD, and 
researchers. The purpose of the IACC is to coordinate federal 
efforts around research and treatment of autism across federal 
agencies, and to provide advice to the Secretary of Health and 
Human Services (HHS) on issues related to ASD. The law was 
reauthorized in 2011, and again in 2014, after being renamed 
the Autism CARES Act.\8\ The Autism CARES Act of 2014 continued 
programs related to ASD surveillance, research, education, 
early detection, and intervention, and reauthorized the IACC. 
Additionally, the Autism CARES Act of 2014 required the 
appointment of a National Autism Coordinator within HHS and 
authorized funding through the end of fiscal year 2019.
---------------------------------------------------------------------------
    \7\Pub. L. No. 109-416.
    \8\Pub. L. No. 113-157.
---------------------------------------------------------------------------

                        III. Committee Hearings

    For the purposes of section 103(i) of H. Res. 6 of the 
116th Congress, the following hearing was used to develop or 
consider H.R. 1058:
    The Subcommittee on Health held a legislative hearing on 
June 25, 2019, to consider H.R. 1058, the ``Autism 
Collaboration, Accountability, Research, Education, and Support 
Act of 2019'' or the ``Autism CARES Act of 2019'' and three 
other bills, entitled ``Reauthorizing Vital Health Programs for 
American Families.'' The Subcommittee received testimony from:
     Amy Hewitt, Ph.D., Director, Institute on 
Community Integration, University of Minnesota;
     Joseph Bocchini, M.D., Professor, Department of 
Pediatrics Louisiana State University Health, Shreveport;
     Patricia Kunz Howard, Ph.D., RN, President, 
Emergency Nurses Association, Director, Emergency Services, 
University of Kentucky Healthcare; and
     Jill Kagan, Director, ARCH National Respite 
Network and Resource Center.

                      IV. Committee Consideration

    H.R. 1058, the ``Autism CARES Act of 2019'' was introduced 
in the House on February 7, 2019, by Reps. Christopher Smith 
(R-NJ) and Michael F. Doyle (D-PA) and referred to the 
Committee on Energy and Commerce. Subsequently, the bill was 
referred to the Subcommittee on Health on February 8, 2019. 
Following a legislative hearing, the Subcommittee met in open 
markup session, pursuant to notice, on July 11, 2019, for 
consideration of the bill H.R. 1058. During consideration of 
the bill, an amendment was offered by Ms. Eshoo (D-CA), 
Chairwoman of the Subcommittee, and it was agreed to by a voice 
vote. Subsequently, the Subcommittee on Health agreed to a 
motion by Ms. Eshoo that H.R. 1058 be forwarded favorably to 
the full Committee on Energy and Commerce, amended, by a voice 
vote.
    On July 17, 2019, the full Committee met in open markup 
session, pursuant to notice, to consider the bill H.R. 1058, as 
amended by the Subcommittee. During consideration of the bill, 
an amendment in the nature of a substitute was offered by Mr. 
Doyle. An amendment to the Doyle substitute was offered by Ms. 
Rodgers (R-WA) and adopted by a voice vote. The Doyle amendment 
in the nature of a substitute, as amended by the Rodgers 
amendment, was then adopted by a voice vote. At the conclusion 
of consideration of the bill, the full Committee on Energy and 
Commerce agreed to a motion by Mr. Pallone, Chairman of the 
Committee, that H.R. 1058 be ordered reported favorably to the 
House, amended, by a voice vote, a quorum being present.

                           V. Committee Votes

    Clause 3(b) of rule XIII of the Rules of the House of 
Representatives requires the Committee to list each record vote 
on the motion to report legislation and amendments thereto. The 
Committee advises that there were no record votes taken on H.R. 
1058.

                         VI. Oversight Findings

    Pursuant to clause 3(c)(1) of rule XIII and clause 2(b)(1) 
of rule X of the Rules of the House of Representatives, the 
Committee's oversight findings and recommendations are 
reflected in the descriptive portion of the report.

           VII. New Budget Authority, Entitlement Authority, 
                          and Tax Expenditures

    Pursuant to 3(c)(2) of rule XIII of the Rules of the House 
of Representatives, the Committee adopts as its own the 
estimate of new budget authority, entitlement authority, or tax 
expenditures or revenues contained in the cost estimate 
prepared by the Director of the Congressional Budget Office 
pursuant to section 402 of the Congressional Budget Act of 
1974.
    The Committee has requested but not received from the 
Director of the Congressional Budget Office a statement as to 
whether this bill contains any new budget authority, spending 
authority, credit authority, or an increase or decrease in 
revenues or tax expenditures.

                    VIII. Federal Mandates Statement

    The Committee adopts as its own the estimate of Federal 
mandates prepared by the Director of the Congressional Budget 
Office pursuant to section 423 of the Unfunded Mandates Reform 
Act.

       IX. Statement of General Performance Goals and Objectives

    Pursuant to clause 3(c)(4) of rule XIII, the general 
performance goal or objective of this legislation is to 
reauthorize certain provisions of the Public Health Service Act 
relating to autism, and for other purposes.

                   X. Duplication of Federal Programs

    Pursuant to clause 3(c)(5) of rule XIII, no provision of 
H.R. 1058 is known to be duplicative of another Federal 
program, including any program that was included in a report to 
Congress pursuant to section 21 of Public Law 111-139 or the 
most recent Catalog of Federal Domestic Assistance.

                      XI. Committee Cost Estimate

    Pursuant to clause 3(d)(1) of rule XIII, the Committee 
adopts as its own the cost estimate prepared by the Director of 
the Congressional Budget Office pursuant to section 402 of the 
Congressional Budget Act of 1974.

               XII. Earmarks, Limited Tax Benefits, and 
                        Limited Tariff Benefits

    Pursuant to clause 9(e), 9(f), and 9(g) of rule XXI, the 
Committee finds that H.R. 1058 contains no earmarks, limited 
tax benefits, or limited tariff benefits.

                   XIII. Advisory Committee Statement

    No advisory committees within the meaning of section 5(b) 
of the Federal Advisory Committee Act were created by this 
legislation.

                XIV. Applicability to Legislative Branch

    The Committee finds that the legislation does not relate to 
the terms and conditions of employment or access to public 
services or accommodations within the meaning of section 
102(b)(3) of the Congressional Accountability Act.

           XV. Section-by-Section Analysis of the Legislation


Section 1. Short title

    Section 1 designates that the short title may be cited as 
the ``Autism Collaboration, Accountability, Research, 
Education, and Support Act of 2019'' or the ``Autism CARES Act 
of 2019''.

Sec. 2. Expansion, intensification, and coordination of activities of 
        the NIH with respect to research on autism spectrum disorder

    Section 2 amends current law to ensure that research is 
aimed at maximizing outcomes for individuals with ASD and that 
research includes an examination of services across the 
lifespan of individuals with ASD. Additionally, section 2 
requires that Centers of Excellence include research in 
developmental, behavioral, and clinical psychology in addition 
to neurobiology, genetics, genomics, and psychopharmacology. 
Finally, section 2 authorizes the NIH Director to consider, as 
appropriate, the extent to which a center can demonstrate 
availability and access to clinical services for youth and 
adults from diverse racial, ethnic, geographic, or linguistic 
backgrounds in decisions about awarding grants to applicants 
which otherwise meet scientific criteria for funding.

Sec. 3. Programs relating to autism

    Section 3 includes several changes to ensure that autism 
programs are inclusive and available in a variety of settings. 
First, the section makes several technical and conforming 
amendments to ensure that all individuals with autism spectrum 
disorder and other disabilities are properly included in 
programs relating to autism across their lifespan. Section 3 
also allows the HHS Secretary to prioritize grant applications 
for developmental-behavioral pediatrician training programs in 
rural or underserved areas. It also ensures tribal 
organizations are eligible for data collection and centers of 
excellence grants.
    Additionally, section 3 makes three changes to the 
composition of the IACC: first, the section adds 
representatives from the Departments of Justice, Veterans 
Affairs, and Housing and Urban Development among suggested 
officials to include on the IACC; second, the section requires 
that of the non-federal members on the IACC, at least three 
must be individuals with a diagnosis of ASD, three must be 
parents or legal guardians of individuals with ASD, and at 
least three must be representatives of leading research 
advocacy, and service organizations for individuals with ASD; 
and third, this section limits members of the IACC to two four-
year terms.
    This section also requires the Secretary to submit 
comprehensive reports to Congress on the demographics of 
individuals with ASD, approaches to improving health outcomes 
for people with ASD, and other recommendations.
    Finally, the section includes a five-year authorization of 
$23.1 million each year for Developmental Disabilities 
Surveillance and Research Program at CDC; $190 million each 
year for autism education, early detection, and intervention at 
HRSA; and $296 million each year for activities relating to 
autism at the NIH.

       XVI. Changes in Existing Law Made by the Bill, as Reported

  In compliance with clause 3(e) of rule XIII of the Rules of 
the House of Representatives, changes in existing law made by 
the bill, as reported, are shown as follows (existing law 
proposed to be omitted is enclosed in black brackets, new 
matter is printed in italic, and existing law in which no 
change is proposed is shown in roman):

                       PUBLIC HEALTH SERVICE ACT




           *       *       *       *       *       *       *
TITLE III--GENERAL POWERS AND DUTIES OF PUBLIC HEALTH SERVICE

           *       *       *       *       *       *       *



                  PART R--PROGRAMS RELATING TO AUTISM

SEC. 399AA. DEVELOPMENTAL DISABILITIES SURVEILLANCE AND RESEARCH 
                    PROGRAM.

  (a) Autism Spectrum Disorder and Other Developmental 
Disabilities.--
          (1) In general.--The Secretary, acting through the 
        Director of the Centers for Disease Control and 
        Prevention, may award grants or cooperative agreements 
        to eligible entities for the collection, analysis, and 
        reporting of State epidemiological data for children 
        and [adults on autism spectrum disorder] adults with 
        autism spectrum disorder and other developmental 
        disabilities. An eligible entity shall assist with the 
        development and coordination of State autism spectrum 
        disorder and other developmental disability 
        surveillance efforts within a region. In making such 
        awards, the Secretary may provide direct technical 
        assistance in lieu of cash.
          (2) Data standards.--In submitting epidemiological 
        data to the Secretary pursuant to paragraph (1), an 
        eligible entity shall report data according to 
        guidelines prescribed by the Director of the Centers 
        for Disease Control and Prevention, after consultation 
        with relevant [State and local public health officials] 
        State, local, and Tribal public health officials, 
        private sector developmental disability researchers, 
        and advocates for individuals with autism spectrum 
        disorder [or other developmental disabilities] and 
        other developmental disabilities.
          (3) Eligibility.--To be eligible to receive an award 
        under paragraph (1), an entity shall be a public or 
        nonprofit private entity (including a health department 
        of a State or a political subdivision of a State, [a 
        university, or any other educational institution] a 
        university, any other educational institution, an 
        Indian tribe, or a tribal organization), and submit to 
        the Secretary an application at such time, in such 
        manner, and containing such information as the 
        Secretary may require.
  (b) Centers of Excellence in Autism Spectrum Disorder 
Epidemiology.--
          (1) In general.--The Secretary, acting through the 
        Director of the Centers for Disease Control and 
        Prevention, shall, subject to the availability of 
        appropriations, award grants or cooperative agreements 
        for the establishment or support of regional centers of 
        excellence in autism spectrum disorder and other 
        developmental disabilities epidemiology for the purpose 
        of collecting and analyzing information on the number, 
        incidence, correlates, and causes of autism spectrum 
        disorder and other developmental disabilities for 
        children and adults.
          (2) Requirements.--To be eligible to receive a grant 
        or cooperative agreement under paragraph (1), an entity 
        shall submit to the Secretary an application containing 
        such agreements and information as the Secretary may 
        require, including an agreement that the center to be 
        established or supported under the grant or cooperative 
        agreement shall operate in accordance with the 
        following:
                  (A) The center will collect, analyze, and 
                report autism spectrum disorder and other 
                developmental disability data according to 
                guidelines prescribed by the Director of the 
                Centers for Disease Control and Prevention, 
                after consultation with [relevant State and 
                local public health officials, private sector 
                developmental disability researchers, and 
                advocates for individuals with developmental 
                disabilities] State, local, and Tribal public 
                health officials, private sector developmental 
                disability researchers, advocates for 
                individuals with autism spectrum disorder, and 
                advocates for individuals with other 
                developmental disabilities.
                  (B) The center will develop or extend an area 
                of special research expertise (including 
                genetics, epigenetics, and epidemiological 
                research related to environmental exposures), 
                immunology, and other relevant research 
                specialty areas.
                  (C) The center will identify eligible cases 
                and controls through its surveillance system 
                and conduct research into factors which may 
                cause or increase the risk of autism spectrum 
                disorder and other developmental disabilities.
  (c) Federal Response.--The Secretary shall coordinate the 
Federal response to requests for assistance from State health, 
mental health, and education department officials regarding 
potential or alleged autism spectrum disorder or developmental 
disability clusters.
  (d) Definitions.--In this part:
          (1) Indian tribe; tribal organization.--The terms 
        ``Indian tribe'' and ``tribal organization'' have the 
        meanings given such terms in section 4 of the Indian 
        Health Care Improvement Act.
          [(1)] (2) Other developmental disabilities.--The term 
        ``other developmental disabilities'' has the meaning 
        given the term ``developmental disability'' in section 
        102(8) of the Developmental Disabilities Assistance and 
        Bill of Rights Act of 2000 (42 U.S.C. 15002(8)).
          [(2)] (3) State.--The term ``State'' means each of 
        the several States, the District of Columbia, the 
        Commonwealth of Puerto Rico, American Samoa, Guam, the 
        Commonwealth of the Northern Mariana Islands, the 
        Virgin Islands, and the Trust Territory of the Pacific 
        Islands.
  (e) Sunset.--This section shall not apply after September 30, 
[2019] 2024.

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

  (a) Purpose.--It is the purpose of this section--
          (1) to increase awareness, reduce barriers to 
        screening and diagnosis, promote evidence-based 
        interventions for [individuals with autism spectrum 
        disorder or other developmental disabilities] 
        individuals with autism spectrum disorder and other 
        developmental disabilities, and train professionals to 
        utilize valid and reliable screening tools to diagnose 
        or rule out and provide evidence-based interventions 
        for [children with autism spectrum disorder and other 
        developmental disabilities;] individuals with autism 
        spectrum disorder and other developmental disabilities 
        across their lifespan; and
          (2) to conduct activities under this section with a 
        focus on an interdisciplinary approach (as defined in 
        programs developed under section 501(a)(2) of the 
        Social Security Act) that will also focus on specific 
        issues for children who are not receiving an early 
        diagnosis and subsequent interventions.
  (b) In General.--The Secretary shall, subject to the 
availability of appropriations, establish and evaluate 
activities to--
          (1) provide culturally competent information and 
        education on autism spectrum disorder and other 
        developmental disabilities to increase public awareness 
        of developmental milestones;
          (2) promote research into the development and 
        validation of reliable screening tools for individuals 
        with autism spectrum disorder and other developmental 
        disabilities and disseminate information regarding 
        those screening tools;
          (3) promote early screening of individuals at higher 
        risk for autism spectrum disorder and other 
        developmental disabilities as early as practicable, 
        given evidence-based screening techniques and 
        interventions;
          (4) promote evidence-based screening techniques and 
        interventions for individuals with autism spectrum 
        disorder and other developmental disabilities across 
        their lifespan;
          [(4)] (5) increase the number of individuals who are 
        able to confirm or rule out a diagnosis of autism 
        spectrum disorder and other developmental disabilities;
          [(5)] (6) increase the number of individuals able to 
        provide evidence-based interventions for individuals 
        diagnosed with autism spectrum disorder or other 
        developmental disabilities; and
          [(6)] (7) promote the use of evidence-based 
        interventions for individuals at higher risk for autism 
        spectrum disorder and other developmental disabilities 
        as early as practicable.
  (c) Information and Education.--
          (1) In general.--In carrying out subsection (b)(1), 
        the Secretary, in collaboration with the Secretary of 
        Education and the Secretary of Agriculture, shall, 
        subject to the availability of appropriations, provide 
        culturally competent information regarding autism 
        spectrum disorder and other developmental disabilities, 
        risk factors, characteristics, identification, 
        diagnosis or rule out, and evidence-based interventions 
        to meet [the needs of individuals with autism spectrum 
        disorder or other developmental disabilities and their 
        families] the needs of individuals with autism spectrum 
        disorder and other developmental disabilities across 
        their lifespan and the needs of their families 
        through--
                  (A) Federal programs, including--
                          (i) the Head Start program;
                          (ii) the Early Start program;
                          (iii) the Healthy Start program;
                          (iv) programs under the Child Care 
                        and Development Block Grant Act of 
                        1990;
                          (v) programs under title XIX of the 
                        Social Security Act (particularly the 
                        Medicaid Early and Periodic Screening, 
                        Diagnosis and Treatment Program);
                          (vi) the program under title XXI of 
                        the Social Security Act (the State 
                        Children's Health Insurance Program);
                          (vii) the program under title V of 
                        the Social Security Act (the Maternal 
                        and Child Health Block Grant Program);
                          (viii) the program under parts B and 
                        C of the Individuals with Disabilities 
                        Education Act;
                          (ix) the special supplemental 
                        nutrition program for women, infants, 
                        and children established under section 
                        17 of the Child Nutrition Act of 1966 
                        (42 U.S.C. 1786); and
                          (x) the State grant program under the 
                        Rehabilitation Act of 1973.
                  (B) State licensed child care facilities; and
                  (C) other community-based organizations or 
                points of entry for individuals with autism 
                spectrum disorder and other developmental 
                disabilities to receive services.
          (2) Lead agency.--
                  (A) Designation.--As a condition on the 
                provision of assistance or the conduct of 
                activities under this section with respect to a 
                State, the Secretary may require the Governor 
                of the State--
                          (i) to designate a public agency as a 
                        lead agency to coordinate the 
                        activities provided for under paragraph 
                        (1) in the State at the State level; 
                        and
                          (ii) acting through such lead agency, 
                        to make available to individuals and 
                        their family members, guardians, 
                        advocates, or authorized 
                        representatives; providers; and other 
                        appropriate individuals in the State, 
                        comprehensive culturally competent 
                        information about State and local 
                        resources regarding autism spectrum 
                        disorder and other developmental 
                        disabilities, risk factors, 
                        characteristics, identification, 
                        diagnosis or rule out, available 
                        services and supports (which may 
                        include respite care for [caregivers of 
                        individuals with an autism spectrum 
                        disorder] caregivers of individuals 
                        with autism spectrum disorder or other 
                        developmental disabilities), and 
                        evidence-based interventions.
                  (B) Requirements of agency.--In designating 
                the lead agency under subparagraph (A)(i), the 
                Governor shall--
                          (i) select an agency that has 
                        demonstrated experience and expertise 
                        in--
                                  (I) autism spectrum disorder 
                                and other developmental 
                                disability issues; and
                                  (II) developing, 
                                implementing, conducting, and 
                                administering programs and 
                                delivering education, 
                                information, and referral 
                                services (including technology-
                                based curriculum-development 
                                services) to individuals with 
                                autism spectrum disorder and 
                                developmental disabilities and 
                                their family members, 
                                guardians, advocates or 
                                authorized representatives, 
                                providers, and other 
                                appropriate individuals locally 
                                and across the State; and
                          (ii) consider input from individuals 
                        with autism spectrum disorder and 
                        developmental disabilities and their 
                        family members, guardians, advocates or 
                        authorized representatives, providers, 
                        and other appropriate individuals.
                  (C) Information.--Information under 
                subparagraph (A)(ii) shall be provided 
                through--
                          (i) toll-free telephone numbers;
                          (ii) Internet websites;
                          (iii) mailings; or
                          (iv) such other means as the Governor 
                        may require.
  (d) Tools.--
          (1) In general.--To promote the use of valid and 
        reliable screening tools for autism spectrum disorder 
        and other developmental disabilities, the Secretary 
        shall develop a curriculum for continuing education to 
        assist individuals in recognizing the need for valid 
        and reliable screening tools and the use of such tools.
          (2) Collection, storage, coordination, and 
        availability.--The Secretary, in collaboration with the 
        Secretary of Education, shall provide for the 
        collection, storage, coordination, and public 
        availability of tools described in paragraph (1), 
        educational materials and other products that are used 
        by the Federal programs referred to in subsection 
        (c)(1)(A), as well as--
                  (A) programs authorized under the 
                Developmental Disabilities Assistance and Bill 
                of Rights Act of 2000;
                  (B) early intervention programs or 
                interagency coordinating councils authorized 
                under part C of the Individuals with 
                Disabilities Education Act; and
                  (C) children with special health care needs 
                programs authorized under title V of the Social 
                Security Act.
          (3) Required sharing.--In establishing mechanisms and 
        entities under this subsection, the Secretary, and the 
        Secretary of Education, shall ensure the sharing of 
        tools, materials, and products developed under this 
        subsection among entities receiving funding under this 
        section.
  (e) Diagnosis.--
          (1) Training.--The Secretary, in coordination with 
        activities conducted under title V of the Social 
        Security Act, shall, subject to the availability of 
        appropriations, expand existing interdisciplinary 
        training opportunities or opportunities to increase the 
        number of sites able to diagnose or rule out 
        individuals with autism spectrum disorder or other 
        developmental disabilities across their lifespan and 
        ensure that--
                  (A) competitive grants or cooperative 
                agreements are awarded to public or nonprofit 
                agencies, including institutions of higher 
                education, to expand existing or develop new 
                maternal and child health interdisciplinary 
                leadership education in neurodevelopmental and 
                related disabilities programs (similar to the 
                programs developed under section 501(a)(2) of 
                the Social Security Act) in States that do not 
                have such a program;
                  (B) trainees under such training programs--
                          (i) receive an appropriate balance of 
                        academic, clinical, and community 
                        opportunities;
                          (ii) are culturally competent;
                          (iii) are ethnically diverse;
                          (iv) demonstrate a capacity to 
                        evaluate, diagnose or rule out, 
                        develop, and provide evidence-based 
                        interventions to individuals with 
                        autism spectrum disorder and other 
                        developmental disabilities across their 
                        lifespan; and
                          (v) demonstrate an ability to use a 
                        family-centered approach, which may 
                        include collaborating with research 
                        centers or networks to provide training 
                        for providers of respite care (as 
                        defined in section 2901); and
                  (C) program sites provide culturally 
                competent services.
          (2) Developmental-behavioral pediatrician training 
        programs.--
                  (A) In general.--In making awards under this 
                subsection, the Secretary may prioritize awards 
                to applicants that are developmental-behavioral 
                pediatrician training programs located in rural 
                or underserved areas.
                  (B) Definition of underserved area.--In this 
                paragraph, the term ``underserved area'' 
                means--
                          (i) a health professional shortage 
                        area (as defined in section 
                        332(a)(1)(A)); and
                          (ii) an urban or rural area 
                        designated by the Secretary as an area 
                        with a shortage of personal health 
                        services (as described in section 
                        330(b)(3)(A)).
          [(2)] (3) Technical assistance.--The Secretary may 
        award one or more grants under this section to provide 
        technical assistance to the network of 
        interdisciplinary training programs.
          [(3)] (4) Best practices.--The Secretary shall 
        promote research into additional valid and reliable 
        tools for shortening the time required to confirm or 
        rule out a diagnosis of autism spectrum disorder or 
        other developmental disabilities and detecting 
        individuals with autism spectrum disorder or other 
        developmental disabilities at an earlier age.
  (f) Intervention.--The Secretary shall promote research, 
through grants or contracts, which may include grants or 
contracts to research centers or networks, to determine the 
evidence-based practices for interventions to improve the 
physical and behavioral health of individuals with autism 
spectrum disorder or other developmental disabilities across 
the lifespan of such individuals, develop guidelines for those 
interventions, and disseminate information related to such 
research and guidelines.
  (g) Sunset.--This section shall not apply after September 30, 
[2019] 2024.

SEC. 399CC. INTERAGENCY AUTISM COORDINATING COMMITTEE.

  (a) Establishment.--The Secretary shall establish a 
committee, to be known as the ``Interagency Autism Coordinating 
Committee'' (in this section referred to as the ``Committee''), 
to coordinate all efforts within the Department of Health and 
Human Services concerning autism spectrum disorder.
  (b) Responsibilities.--In carrying out its duties under this 
section, the Committee shall--
          (1) monitor autism spectrum disorder research, and to 
        the extent practicable services and support activities, 
        across all relevant Federal departments and agencies, 
        including coordination of Federal activities with 
        respect to autism spectrum disorder;
          (2) develop a summary of advances in autism spectrum 
        disorder research related to causes, prevention, 
        treatment, early screening, diagnosis or rule out, 
        interventions, including school and community-based 
        interventions, and access to services and supports for 
        individuals with autism spectrum disorder across the 
        lifespan of such individuals;
          (3) make recommendations to the Secretary regarding 
        any appropriate changes to such activities, including 
        with respect to the strategic plan developed under 
        paragraph (5);
          (4) make recommendations to the Secretary regarding 
        public participation in decisions relating to autism 
        spectrum disorder, and the process by which public 
        feedback can be better integrated into such decisions;
          (5) develop a strategic plan for the conduct of, and 
        support for, autism spectrum disorder research, 
        including as practicable for services and supports, for 
        individuals with an autism spectrum disorder across the 
        lifespan of such individuals and the families of such 
        individuals, which shall include--
                  (A) proposed budgetary requirements; and
                  (B) recommendations to ensure that autism 
                spectrum disorder research, and services and 
                support activities to the extent practicable, 
                of the Department of Health and Human Services 
                and of other Federal departments and agencies 
                are not unnecessarily duplicative; and
          (6) submit to Congress and the President--
                  (A) an annual update on the summary of 
                advances described in paragraph (2); and
                  (B) an annual update to the strategic plan 
                described in paragraph (5), including any 
                progress made in achieving the goals outlined 
                in such strategic plan.
  (c) Membership.--
          (1) Federal membership.--The Committee shall be 
        composed of the following Federal members--
                  (A) the Director of the Centers for Disease 
                Control and Prevention;
                  (B) the Director of the National Institutes 
                of Health, and the Directors of such national 
                research institutes of the National Institutes 
                of Health as the Secretary determines 
                appropriate;
                  (C) the heads of such other agencies as the 
                Secretary determines appropriate, such as the 
                Administration for Community Living, 
                Administration for Children and Families, the 
                Centers for Medicare & Medicaid Services, the 
                Food and Drug Administration, and the Health 
                Resources and Services Administration; and
                  (D) representatives of other Federal 
                Governmental agencies that serve individuals 
                with autism spectrum disorder such as the 
                Department of Education, the Department of 
                Labor, the Department of Justice, the 
                Department of Veterans Affairs, the Department 
                of Housing and Urban Development, and the 
                Department of Defense.
          (2) Non-federal members.--Not more than \1/2\, but 
        not fewer than \1/3\, of the total membership of the 
        Committee, shall be composed of non-Federal public 
        members to be appointed by the Secretary, of which--
                  (A) [at least two such members] at least 
                three such members shall be individuals with a 
                diagnosis of autism spectrum disorder;
                  (B) [at least two such members] at least 
                three such members shall be parents or legal 
                guardians of an individual with an autism 
                spectrum disorder; and
                  (C) [at least two such members] at least 
                three such members shall be representatives of 
                leading research, advocacy, and service 
                organizations for individuals with autism 
                spectrum disorder.
          (3) Period of appointment; vacancies.--
                  (A) Period of appointment for non-federal 
                members.--Non-Federal members shall serve for a 
                term of 4 years, and may be reappointed for 
                [one or more additional 4-year terms] one 
                additional 4-year term.
                  (B) Vacancies.--A vacancy on the Committee 
                shall be filled in the manner in which the 
                original appointment was made and shall not 
                affect the powers or duties of the Committee. 
                Any member appointed to fill a vacancy for an 
                unexpired term shall be appointed for the 
                remainder of such term. A member may serve 
                after the expiration of the member's term until 
                a successor has been appointed.
  (d) Administrative Support; Terms of Service; Other 
Provisions.--The following provisions shall apply with respect 
to the Committee:
          (1) The Committee shall receive necessary and 
        appropriate administrative support from the Secretary.
          (2) The Committee shall meet at the call of the 
        chairperson or upon the request of the Secretary. The 
        Committee shall meet not fewer than 2 times each year.
          (3) All meetings of the Committee shall be public and 
        shall include appropriate time periods for questions 
        and presentations by the public.
  (e) Subcommittees; Establishment and Membership.--In carrying 
out its functions, the Committee may establish subcommittees 
and convene workshops and conferences. Such subcommittees shall 
be composed of Committee members and may hold such meetings as 
are necessary to enable the subcommittees to carry out their 
duties.
  (f) Sunset.--This section shall not apply after September 30, 
[2019] 2024, and the Committee shall be terminated on such 
date.

SEC. 399DD. REPORTS TO CONGRESS.

  (a) Progress Report.--
          (1) In General.--Not later than 4 years after the 
        date of enactment of the [Autism CARES Act of 2014] 
        Autism CARES Act of 2019, the Secretary, in 
        coordination with the Secretary of Education and the 
        Secretary of Defense, shall prepare and submit to the 
        Health, Education, Labor, and Pensions Committee of the 
        Senate and the Energy and Commerce Committee of the 
        House of Representatives, and make publicly available, 
        including through posting on the Internet Web site of 
        the Department of Health and Human Services, a progress 
        report on activities related to autism spectrum 
        disorder and other developmental disabilities.
          (2) Contents.--The report submitted under subsection 
        (a) shall contain--
                  (A) a description of the progress made in 
                implementing the provisions of the [Autism 
                CARES Act of 2014] Autism CARES Act of 2019;
                  (B) a description of the amounts expended on 
                the implementation of the amendments made by 
                the [Autism CARES Act of 2014] Autism CARES Act 
                of 2019;
                  (C) information on the incidence and 
                prevalence of autism spectrum disorder, 
                including available information on the 
                prevalence of autism spectrum disorder among 
                children and adults, and identification of any 
                changes over time with respect to the incidence 
                and prevalence of autism spectrum disorder;
                  (D) information on the average age of 
                diagnosis for children with autism spectrum 
                disorder and other disabilities, including how 
                that age may have changed over the 4-year 
                period beginning on the date of enactment of 
                the [Autism CARES Act of 2014] Autism CARES Act 
                of 2019 and, as appropriate, how this age 
                varies across population subgroups;
                  (E) information on the average age for 
                intervention for individuals diagnosed with 
                autism spectrum disorder and other 
                developmental disabilities, including how that 
                age may have changed over the 4-year period 
                beginning on the date of enactment of the 
                [Autism CARES Act of 2014] Autism CARES Act of 
                2019 and, as appropriate, how this age varies 
                across population subgroups;
                  (F) information on the average time between 
                initial screening and then diagnosis or rule 
                out for individuals with autism spectrum 
                disorder or other developmental disabilities, 
                as well as information on the average time 
                between diagnosis and evidence-based 
                intervention for individuals with autism 
                spectrum disorder or other developmental 
                disabilities and, as appropriate, on how such 
                average time varies across population 
                subgroups;
                  (G) information on the effectiveness and 
                outcomes of interventions for individuals 
                diagnosed with autism spectrum disorder, 
                including by severity level as practicable, and 
                other developmental disabilities and how the 
                [age of the child] age of the individual or 
                other factors, such as demographic 
                characteristics, may affect such effectiveness;
                  (H) information on the effectiveness and 
                outcomes of innovative and newly developed 
                intervention strategies for individuals with 
                autism spectrum disorder or other developmental 
                disabilities[; and];
                  (I) a description of the actions taken to 
                implement and the progress made on 
                implementation of the strategic plan developed 
                by the Interagency Autism Coordinating 
                Committee under section 399CC(b)[.]; and
                  (J) information on how States use home- and 
                community-based services and other supports to 
                ensure that individuals with autism spectrum 
                disorder and other developmental disabilities 
                are living, working, and participating in their 
                community.
  (b) Report on [Young Adults and Transitioning Youth] the 
Health and Well-Being of Individuals With Autism Spectrum 
Disorder Across Their Lifespan.--
          [(1) In general.--Not later than 2 years after the 
        date of enactment of the Autism CARES Act of 2014, the 
        Secretary of Health and Human Services, in coordination 
        with the Secretary of Education and in collaboration 
        with the Secretary of Transportation, the Secretary of 
        Labor, the Secretary of Housing and Urban Development, 
        and the Attorney General, shall prepare and submit to 
        the Committee on Health, Education, Labor, and Pensions 
        of the Senate and the Committee on Energy and Commerce 
        of the House of Representatives, a report concerning 
        young adults with autism spectrum disorder and the 
        challenges related to the transition from existing 
        school-based services to those services available 
        during adulthood.]
          (1) In general.--Not later than 2 years after the 
        date of enactment of the Autism CARES Act of 2019, the 
        Secretary shall prepare and submit, to the Committee on 
        Health, Education, Labor, and Pensions of the Senate 
        and the Committee on Energy and Commerce of the House 
        of Representatives, a report concerning the health and 
        well-being of individuals with autism spectrum 
        disorder.
          (2) Contents.--The report submitted under paragraph 
        (1) shall contain--
                  [(A) demographic characteristics of youth 
                transitioning from school-based to community-
                based supports;]
                  (A) demographic factors associated with the 
                health and well-being of individuals with 
                autism spectrum disorder;
                  (B) an overview of policies and programs 
                relevant to [young adults with autism spectrum 
                disorder relating to post-secondary school 
                transitional services, including an 
                identification of existing Federal laws, 
                regulations, policies, research, and programs;] 
                the health and well-being of individuals with 
                autism spectrum disorder, including an 
                identification of existing Federal laws, 
                regulations, policies, research, and programs;
                  [(C) proposals on establishing best practices 
                guidelines to ensure--
                          [(i) interdisciplinary coordination 
                        between all relevant service providers 
                        receiving Federal funding;
                          [(ii) coordination with transitioning 
                        youth and the family of such 
                        transitioning youth; and
                          [(iii) inclusion of the 
                        individualized education program for 
                        the transitioning youth, as prescribed 
                        in section 614 of the Individuals with 
                        Disabilities Education Act (20 U.S.C. 
                        1414);
                  [(D) comprehensive approaches to 
                transitioning from existing school-based 
                services to those services available during 
                adulthood, including--
                          [(i) services that increase access 
                        to, and improve integration and 
                        completion of, post-secondary 
                        education, peer support, vocational 
                        training (as defined in section 103 of 
                        the Rehabilitation Act of 1973 (29 
                        U.S.C. 723)), rehabilitation, self-
                        advocacy skills, and competitive, 
                        integrated employment;
                          [(ii) community-based behavioral 
                        supports and interventions;
                          [(iii) community-based integrated 
                        residential services, housing, and 
                        transportation;
                          [(iv) nutrition, health and wellness, 
                        recreational, and social activities;
                          [(v) personal safety services for 
                        individuals with autism spectrum 
                        disorder related to public safety 
                        agencies or the criminal justice 
                        system; and
                          [(vi) evidence-based approaches for 
                        coordination of resources and services 
                        once individuals have aged out of post-
                        secondary education; and
                  [(E) proposals that seek to improve outcomes 
                for adults with autism spectrum disorder making 
                the transition from a school-based support 
                system to adulthood by--
                          [(i) increasing the effectiveness of 
                        programs that provide transition 
                        services;
                          [(ii) increasing the ability of the 
                        relevant service providers described in 
                        subparagraph (C) to provide supports 
                        and services to underserved populations 
                        and regions;
                          [(iii) increasing the efficiency of 
                        service delivery to maximize resources 
                        and outcomes, including with respect to 
                        the integration of and collaboration 
                        among services for transitioning youth;
                          [(iv) ensuring access to all services 
                        necessary to transitioning youth of all 
                        capabilities; and
                          [(v) encouraging transitioning youth 
                        to utilize all available transition 
                        services to maximize independence, 
                        equal opportunity, full participation, 
                        and self-sufficiency.]
                  (C) recommendations on establishing best 
                practices guidelines to ensure 
                interdisciplinary coordination between all 
                relevant service providers receiving Federal 
                funding;
                  (D) comprehensive approaches to improving 
                health outcomes and well-being for individuals 
                with autism spectrum disorder, including--
                          (i) community-based behavioral 
                        supports and interventions;
                          (ii) nutrition, recreational, and 
                        social activities; and
                          (iii) personal safety services 
                        related to public safety agencies or 
                        the criminal justice system for such 
                        individuals; and
                  (E) recommendations that seek to improve 
                health outcomes for such individuals, including 
                across their lifespan, by addressing--
                          (i) screening and diagnosis of 
                        children and adults;
                          (ii) behavioral and other therapeutic 
                        approaches;
                          (iii) primary and preventative care;
                          (iv) communication challenges;
                          (v) aggression, self-injury, 
                        elopement, and other behavioral issues;
                          (vi) emergency room visits and acute 
                        care hospitalization;
                          (vii) treatment for co-occurring 
                        physical and mental health conditions;
                          (viii) premature mortality;
                          (ix) medical practitioner training; 
                        and
                          (x) caregiver mental health.

SEC. 399EE. AUTHORIZATION OF APPROPRIATIONS.

  (a) Developmental Disabilities Surveillance and Research 
Program.--To carry out section 399AA, there is authorized to be 
appropriated [$22,000,000 for each of fiscal years 2015 through 
2019] $23,100,000 for each of fiscal years 2020 through 2024.
  (b) Autism Education, Early Detection, and Intervention.--To 
carry out section 399BB, there is authorized to be appropriated 
[$48,000,000 for each of fiscal years 2015 through 2019] 
$50,599,000 for each of fiscal years 2020 through 2024.
  (c) Interagency Autism Coordinating Committee; Certain Other 
Programs.--To carry out sections 399CC and 409C, [there is 
authorized to be appropriated $190,000,000 for each of fiscal 
years 2015 through 2019] there are authorized to be 
appropriated $296,000,000 for each of fiscal years 2020 through 
2024.

           *       *       *       *       *       *       *


TITLE IV--NATIONAL RESEARCH INSTITUTES

           *       *       *       *       *       *       *



Part B--General Provisions Respecting National Research Institutes

           *       *       *       *       *       *       *


  Sec. 409C. (a) In General.--
          (1) Expansion of activities.--The Director of NIH (in 
        this section referred to as the ``Director'') shall, 
        subject to the availability of appropriations, expand, 
        intensify, and coordinate the activities of the 
        National Institutes of Health with respect to research 
        on autism spectrum disorder, including basic and 
        clinical research in fields including pathology, 
        developmental neurobiology, genetics, epigenetics, 
        pharmacology, nutrition, immunology, neuroimmunology, 
        neurobehavioral development, endocrinology, 
        gastroenterology, [and toxicology] toxicology, and 
        interventions to maximize outcomes for individuals with 
        autism spectrum disorder. [Such research shall 
        investigate the cause (including possible environmental 
        causes), diagnosis or rule out, early detection, 
        prevention, services, supports, intervention, and 
        treatment of autism spectrum disorder.] Such research 
        shall investigate the causes (including possible 
        environmental causes), diagnosis or ruling out, early 
        and ongoing detection, prevention, services across the 
        lifespan, supports, intervention, and treatment of 
        autism spectrum disorder, including dissemination and 
        implementation of clinical care, supports, 
        interventions, and treatments.
          (2) Consolidation.--The Director may consolidate 
        program activities under this section if such 
        consolidation would improve program efficiencies and 
        outcomes.
          (3) Administration of program; collaboration among 
        agencies.--The Director shall carry out this section 
        acting through the Director of the National Institute 
        of Mental Health and in collaboration with any other 
        agencies that the Director determines appropriate.
  (b) Centers of Excellence.--
          (1) In general.--The Director shall under subsection 
        (a)(1) make awards of grants and contracts to public or 
        nonprofit private entities to pay all or part of the 
        cost of planning, establishing, improving, and 
        providing basic operating support for centers of 
        excellence regarding research on autism spectrum 
        disorder.
          (2) Research.--Each center under paragraph (1) shall 
        conduct basic and clinical research into autism 
        spectrum disorder. Such research should include 
        investigations into the [cause, diagnosis, early 
        detection, prevention, control, and treatment of autism 
        spectrum disorder] causes, diagnosis, early and ongoing 
        detection, prevention, and treatment of autism spectrum 
        disorder across the lifespan. The centers, as a group, 
        shall conduct research including the fields of 
        developmental [neurobiology, genetics, and 
        psychopharmacology.] neurobiology, genetics, genomics, 
        psychopharmacology, developmental psychology, 
        behavioral psychology, and clinical psychology.
          (3) Services for patients.--
                  (A) In general.--A center under paragraph (1) 
                may expend amounts provided under such 
                paragraph to carry out a program to make 
                individuals aware of opportunities to 
                participate as subjects in research conducted 
                by the centers.
                  (B) Referrals and costs.--A program under 
                subparagraph (A) may, in accordance with such 
                criteria as the Director may establish, provide 
                to the subjects described in such subparagraph, 
                referrals for health and other services, and 
                such patient care costs as are required for 
                research.
                  (C) Availability and access.--The extent to 
                which a center can demonstrate availability and 
                access to clinical services shall be considered 
                by the Director in decisions about awarding 
                grants to applicants which meet the scientific 
                criteria for funding under this section.
                  (D) Reducing disparities.--The Director may 
                consider, as appropriate, the extent to which a 
                center can demonstrate availability and access 
                to clinical services for youth and adults from 
                diverse racial, ethnic, geographic, or 
                linguistic backgrounds in decisions about 
                awarding grants to applicants which meet the 
                scientific criteria for funding under this 
                section.
          (4) Organization of centers.--Each center under 
        paragraph (1) shall use the facilities of a single 
        institution, or be formed from a consortium of 
        cooperating institutions, meeting such requirements as 
        may be prescribed by the Director.
          (5) Number of centers; duration of support.--
                  (A) In general.--The Director shall provide 
                for the establishment of not less than five 
                centers under paragraph (1).
                  (B) Duration.--Support for a center 
                established under paragraph (1) may be provided 
                under this section for a period of not to 
                exceed 5 years. Such period may be extended for 
                one or more additional periods not exceeding 5 
                years if the operations of such center have 
                been reviewed by an appropriate technical and 
                scientific peer review group established by the 
                Director and if such group has recommended to 
                the Director that such period should be 
                extended.
  (c) Facilitation of Research.--The Director shall under 
subsection (a)(1) provide for a program under which samples of 
tissues and genetic materials that are of use in research on 
autism spectrum disorder are donated, collected, preserved, and 
made available for such research. The program shall be carried 
out in accordance with accepted scientific and medical 
standards for the donation, collection, and preservation of 
such samples.
  (d) Public Input.--The Director shall under subsection (a)(1) 
provide for means through which the public can obtain 
information on the existing and planned programs and activities 
of the National Institutes of Health with respect to autism 
spectrum disorder and through which the Director can receive 
comments from the public regarding such programs and 
activities.

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