[House Report 118-620]
[From the U.S. Government Publishing Office]


118th Congress    }                                     {      Report
                        HOUSE OF REPRESENTATIVES
 2d Session       }                                     {      118-620

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



 
AUTISM COLLABORATION, ACCOUNTABILITY, RESEARCH, EDUCATION, AND SUPPORT 
                              ACT OF 2024

                                _______
                                

 July 30, 2024.--Committed to the Committee of the Whole House on the 
              State of the Union and ordered to be printed

                                _______
                                

Mrs. Rodgers of Washington, from the Committee on Energy and Commerce, 
                        submitted the following

                              R E P O R T

                        [To accompany H.R. 7213]

    The Committee on Energy and Commerce, to whom was referred 
the bill (H.R. 7213) 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/reauthorize certain programs with 
respect to autism spectrum disorder?], and for other purposes, 
having considered the same, reports favorably thereon with 
amendments and recommends that the bill as amended do pass.

                                CONTENTS

                                                                   Page
Purpose and Summary..............................................     5
Background and Need for Legislation..............................     5
Committee Action.................................................     6
Committee Votes..................................................     6
Oversight Findings and Recommendations...........................     8
New Budget Authority, Entitlement Authority, and Tax Expenditures     8
Congressional Budget Office Estimate.............................     8
Federal Mandates Statement.......................................     8
Statement of General Performance Goals and Objectives............     8
Duplication of Federal Programs..................................     8
Related Committee and Subcommittee Hearings......................     8
Committee Cost Estimate..........................................     9
Earmark, Limited Tax Benefits, and Limited Tariff Benefits.......     9
Advisory Committee Statement.....................................     9
Applicability to Legislative Branch..............................     9
Section-by-Section Analysis of the Legislation...................     9
Changes in Existing Law Made by the Bill, as Reported............    10

    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 2024'' or the ``Autism CARES 
Act of 2024''.

SEC. 2. NATIONAL INSTITUTES OF HEALTH ACTIVITIES.

  (a) Expansion of Activities.--Paragraph (1) of section 409C(a) of the 
Public Health Service Act (42 U.S.C. 284g(a)) is amended to read as 
follows:
          ``(1) Expansion of activities.--The Director of NIH (in this 
        section referred to as the `Director'), in coordination and 
        consultation with the Administrator of the Administration for 
        Community Living, and other agencies as appropriate, shall--
                  ``(A) 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--
                          ``(i) basic and clinical research in fields 
                        including pathology, developmental 
                        neurobiology, genetics, epigenetics, 
                        pharmacology, nutrition, immunology, 
                        neuroimmunology, neurobehavioral development, 
                        endocrinology, gastroenterology, toxicology, 
                        speech, language and hearing science, 
                        psychiatry, psychology, developmental 
                        behavioral pediatrics, and gerontology; and
                          ``(ii) research on interventions to maximize 
                        outcomes for individuals with autism spectrum 
                        disorder; and
                  ``(B) ensure that research referred to in 
                subparagraph (A)--
                          ``(i) investigates the causes (including 
                        possible environmental causes), diagnosis or 
                        ruling out, early and ongoing detection, 
                        prevention, intervention, services, supports 
                        across the lifespan for autistic individuals 
                        and caregivers, and treatment for autism 
                        spectrum disorder and co-occurring conditions, 
                        including dissemination and implementation of 
                        clinical care, supports, interventions, and 
                        treatments; and
                          ``(ii) reflects the entire population of 
                        individuals with autism spectrum disorder, 
                        including the full range of cognitive, 
                        communicative, behavioral, and adaptive 
                        functioning, as well as co-occurring conditions 
                        and needs for support and services, including 
                        care necessary for physical safety.''.
  (b) Centers of Excellence.--Section 409C(b) of the Public Health 
Service Act (42 U.S.C. 284g(b)) is amended--
          (1) in paragraph (2)--
                  (A) by striking ``prevention, and treatment'' and 
                inserting ``prevention, services, and treatment'';
                  (B) by striking ``including the fields'' and 
                inserting ``including in the fields''; and
                  (C) by striking ``behavioral psychology, and clinical 
                psychology'' and inserting ``behavioral psychology, 
                clinical psychology, and gerontology'';
          (2) in paragraph (5)(A), by striking ``not less than five 
        centers'' and inserting ``not fewer than six centers''; and
          (3) in paragraph (5)(B), by striking ``period of not to 
        exceed'' and inserting ``period not to exceed''.
  (c) Public Input.--Section 409C(d) of the Public Health Service Act 
(42 U.S.C. 284g(d)) is amended to read as follows:
  ``(d) Public Input.--
          ``(1) In general.--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.
          ``(2) Opportunities.--Such public input opportunities may 
        include encouraging the centers under subsection (b)(1) to 
        establish an external advisory board or adopting a 
        comprehensive plan to ensure individuals with various 
        backgrounds and perspectives are represented, among other 
        activities. Such opportunities should consider including, as 
        appropriate, individuals, family members, and caregivers of 
        individuals with autism spectrum disorder who represent the 
        entire population of individuals with autism spectrum disorder, 
        including the full range of cognitive, communicative, 
        behavioral, and adaptive functioning, to better inform research 
        findings and future studies.''.

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 (b)(1), by striking ``and causes'' and 
        inserting ``causes, and life course''; and
          (2) in subsection (e), by striking ``2024'' and inserting 
        ``2029''.
  (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)(2), by striking ``subsequent 
        interventions'' and inserting ``subsequent interventions and 
        services'';
          (2) in subsection (b)(1), by striking ``culturally competent 
        information'' and inserting ``culturally and linguistically 
        responsive information'';
          (3) in subsection (b)(2)--
                  (A) by striking ``promote research'' and inserting 
                ``promote research, which may include community-based 
                participatory research,''; and
                  (B) by striking ``screening tools'' each place it 
                appears and inserting ``screening and diagnostic 
                tools'';
          (4) in subsection (b)(3), by striking ``at higher risk'' and 
        inserting ``at increased likelihood'';
          (5) in subsection (b)(4), by inserting ``, which may include 
        such individuals utilizing parents and guardians trained to 
        provide interventions, services, and supports'' before the 
        semicolon at the end;
          (6) in subsection (c)(1), by striking ``culturally competent 
        information'' and inserting ``culturally and linguistically 
        responsive information'';
          (7) in subsection (c)(2)(A)(ii)--
                  (A) by striking ``advocates,'' and inserting 
                ``advocates, self-advocates,''; and
                  (B) by striking ``culturally competent information'' 
                and inserting ``culturally and linguistically 
                responsive information'';
          (8) by amending paragraph (1) of subsection (e) to read as 
        follows:
          ``(1) Training.--The Secretary, in coordination with 
        activities conducted under title V of the Social Security Act, 
        shall, subject to the availability of appropriations, 
        strengthen the capacity of existing training programs and 
        expand existing interdisciplinary training opportunities or 
        opportunities to increase the number of programs that address 
        the health and well-being of individuals who have or are at 
        increased likelihood for autism spectrum disorder and other 
        neurodevelopmental disabilities across their lifespan. 
        Activities under the preceding sentence shall include--
                  ``(A) awarding competitive grants or cooperative 
                agreements 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) ensuring that trainees under such training 
                programs--
                          ``(i) receive an appropriate balance of 
                        academic, clinical, and community 
                        opportunities;
                          ``(ii) are culturally and linguistically 
                        responsive;
                          ``(iii) are from various backgrounds;
                          ``(iv) demonstrate a capacity to evaluate, 
                        diagnose or rule out, develop, and provide 
                        evidence-based interventions and programs to 
                        individuals with autism spectrum disorder and 
                        other developmental disabilities across their 
                        lifespan; and
                          ``(v) demonstrate an ability to use a person- 
                        and 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);
                  ``(C) ensuring that program sites provide culturally 
                and linguistically responsive services; and
                  ``(D) encouraging training programs to partner with 
                appropriate entities to build community capacity.'';
          (9) in subsection (e)(2), by adding at the end the following 
        new subparagraph:
                  ``(C) Report.--Not later than 2 years after September 
                30, 2024, the Comptroller General of the United States 
                shall prepare and submit to the Committee on Energy and 
                Commerce of the House of Representatives and the 
                Committee on Health, Education, Labor, and Pensions of 
                the Senate a report examining how to increase the 
                number of developmental-behavioral pediatricians, 
                including through the developmental behavioral 
                pediatrician training program.'';
          (10) in subsection (f)--
                  (A) by striking ``promote research'' and inserting 
                ``promote research, including community-based 
                participatory research,'';
                  (B) by striking ``physical and behavioral health of 
                individuals'' and inserting ``physical and behavioral 
                health, and communication needs, of individuals''; and
                  (C) by striking ``disseminate information related to 
                such research and guidelines'' and inserting 
                ``disseminate information relating to such research and 
                guidelines to improve the quality of life and long-term 
                outcomes''; and
          (11) in subsection (g), by striking ``2024'' and inserting 
        ``2029''.
  (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 striking ``develop a 
                summary'' and inserting ``develop and update a 
                summary'';
                  (B) in paragraphs (3) and (4), by striking ``make 
                recommendations'' and inserting ``make and update 
                recommendations''; and
                  (C) by striking paragraphs (5) and (6) and inserting 
                the following:
          ``(5) develop and update 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, and across 
        the entire population of individuals with autism spectrum 
        disorder, including the full range of cognitive, communicative, 
        behavioral, and adaptive functioning, as well as co-occurring 
        conditions and needs for support and services, including care 
        necessary for physical safety, which such plan shall include 
        proposed budgetary requirements and 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 the Congress and President--
                  ``(A) an annual update on the summary of advances 
                described in paragraph (2); and
                  ``(B) each update to the strategic plan described in 
                paragraph (5), including any steps that have already 
                been taken to implement the recommendations in such 
                updated strategic plan and progress made in achieving 
                the goals outlined in such updated strategic plan.''; 
                and
          (2) in subsection (f), by striking ``2024'' and inserting 
        ``2029''.
  (d) Reports to Congress.--Section 399DD of the Public Health Service 
Act (42 U.S.C. 280i-3) is amended--
          (1) by striking ``Autism CARES Act of 2019'' each place it 
        appears and inserting ``Autism CARES Act of 2024'';
          (2) in subsection (a), by amending paragraph (1) to read as 
        follows:
          ``(1) In general.--Not later than 4 years after September 30, 
        2024, the Secretary, in consultation and coordination with 
        other Federal departments and agencies that serve individuals 
        with autism spectrum disorder, 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, and make publicly available, including through 
        posting on the internet website of the Department of Health and 
        Human Services, a progress report on activities related to 
        autism spectrum disorder and other developmental disabilities. 
        Such report shall include activities and research related to 
        the entire population of individuals with autism spectrum 
        disorder, including the full range of cognitive, communicative, 
        behavioral, and adaptive functioning, as well as co-occurring 
        conditions and needs for support and services, including care 
        necessary for physical safety.''; and
          (3) by adding at the end the following:
  ``(c) Update on Young Adults and Youth Transitioning to Adulthood.--
Not later than 2 years after the date of enactment of the Autism CARES 
Act of 2024, the Secretary, in coordination with other Federal 
departments and agencies that serve individuals with autism spectrum 
disorder, shall prepare and submit to the Committee on Energy and 
Commerce of the House of Representatives and the Committee on Health, 
Education, Labor, and Pensions of the Senate an update to the report 
required pursuant to section 6 of the Autism Cares Act of 2014 (Public 
Law 113-157) 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.
  ``(d) Professional Judgment Budget.--For each fiscal year through 
fiscal year 2029, the Director of the National Institutes of Health, in 
coordination with other relevant agencies, as appropriate, shall 
prepare and submit, directly to the President for review and 
transmittal to Congress, after reasonable opportunity for comment, but 
without change, by the Secretary and the Interagency Autism 
Coordinating Committee established under section 399CC(a), an annual 
budget estimate for carrying out the strategic plan developed and 
updated under section 399CC(b)(5).''.
  (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 ``$23,100,000 for each of 
        fiscal years 2020 through 2024'' and inserting ``$28,100,000 
        for each of fiscal years 2025 through 2029'';
          (2) in subsection (b), by striking ``$50,599,000 for each of 
        fiscal years 2020 through 2024'' and inserting ``$56,344,000 
        for each of fiscal years 2025 through 2029''; and
          (3) in subsection (c), by striking ``there are authorized to 
        be appropriated $296,000,000 for each of fiscal years 2020 
        through 2024'' and inserting ``there is authorized to be 
        appropriated $341,000,000 for each of fiscal years 2025 through 
        2029''.

    Amend the title so as to read:
    A bill to amend the Public Health Service Act to enhance 
and reauthorize activities and programs relating to autism 
spectrum disorder, and for other purposes.

                          Purpose and Summary

    The Autism Collaboration, Accountability, Research, 
Education, and Support (CARES) Act of 2024 reauthorizes and 
makes improvements to certain programs related to autism 
spectrum disorder, including the Developmental Disabilities 
Surveillance and Research Program; Autism education, early 
detection, and intervention; and the Interagency Autism 
Coordination Committee at currently appropriated levels for 
fiscal years 2025 through 2029.

                  Background and Need for Legislation

    Autism affects an estimated 1 in 36 children in the United 
States.\1\ Behavioral signs of autism usually appear early in 
development, often as early as 12 to 18 months of age or 
earlier.\2\ Research shows that early intervention and 
therapies lead to positive outcomes later in life for 
individuals with autism.\3\
---------------------------------------------------------------------------
    \1\Maenner MJ, Warren Z, Williams AR, et al. Prevalence and 
Characteristics of Autism Spectrum Disorder Among Children Aged 8 
Years--Autism and Developmental Disabilities Monitoring Network, 11 
Sites, United States, 2020. MMWR Surveill Summ 2023;72 (No. SS-2):1-14. 
DOI:http://dx.doi.org/10.15585/mmwr.ss7202a1.
    \2\``When do children usually show symptoms of autism?,'' National 
Institutes of Health, Eunice Kennedy Shriver National Institute of 
Child Health and Human Development, January 31, 2017, https://
www.nichd.nih.gov/health/topics/autism/conditioninfo/symptoms-appear.
    \3\``Autism spectrum disorder (ASD), What is autism?,'' Autism 
Speaks, https://www.autismspeaks.org/what-is-autism.
---------------------------------------------------------------------------
    First signed into law in 2006, the CARES Act funds programs 
to directly improve the quality of lives of individuals with 
Autism, their families, and their caregivers. The current 
authorization for these programs expires September 30, 2024.
    H.R. 7213 would support and enhance existing programs 
related to autism spectrum disorder, including improving 
research coordination and research into evidence-based 
interventions, ensuring research is reflective of the entire 
population of individuals with autism spectrum disorder, 
continuing surveillance and early identification programs, and 
facilitating increased and robust opportunities for public 
input. The legislation also strengthens existing education and 
training programs for providers, and requires updated strategic 
plans and progress reports, as well as an annual budget plan to 
carry out such strategic planning.

                            Committee Action

    On February 14, 2024, the Subcommittee on Health held a 
hearing on H.R. 7213. The title of the hearing was 
``Legislative Proposals to Support Patients and Caregivers.'' 
The Subcommittee received testimony from:
           Andy Shih, PhD, Chief Science Officer, 
        Autism Speaks;
           Corey Feist, JD, MBA, Co-Founder and CEO, 
        Dr. Lorna Breen Heroes' Foundation;
           Joanne Pike, DrPH, President and CEO, 
        Alzheimer's Association;
           Gordon Tomaselli, MD, Former President, 
        American Heart Association; Marilyn and Stanley M. Katz 
        Dean, Emeritus and Professor of Medicine, Albert 
        Einstein College of Medicine; Adjunct Professor of 
        Medicine, Johns Hopkins University School of Medicine;
           Michelle Whitten, President, CEO, and Co-
        Founder, Global Down Syndrome Foundation;
           Randy Strozyk, President, American Ambulance 
        Association; and
           Christina Annunziata, MD, PhD, Senior Vice 
        President of Extramural Discovery Science, American 
        Cancer Society.
    On May 16, 2024, the Subcommittee on Health met in open 
markup session and forwarded H.R. 7213, as amended, to the full 
Committee by a record vote of 22 yeas to 0 nays.
    On June 12, 2024, the full Committee on Energy and Commerce 
met in open markup session and ordered H.R. 7213, as amended, 
favorably reported to the House by a record vote of 42 yeas and 
0 nays.

                            Committee Votes

    Clause 3(b) of rule XIII requires the Committee to list the 
record votes on the motion to report legislation and amendments 
thereto. The following reflects the record votes taken during 
the Committee consideration:

    [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]

                 Oversight Findings and Recommendations

    Pursuant to clause 2(b)(1) of rule X and clause 3(c)(1) of 
rule XIII, the Committee held a hearing and made findings that 
are reflected in this report.

   New Budget Authority, Entitlement Authority, and Tax Expenditures

    Pursuant to clause 3(c)(2) of rule XIII, the Committee 
finds that H.R. 7213 would result in no new or increased budget 
authority, entitlement authority, or tax expenditures or 
revenues.

                  Congressional Budget Office Estimate

    Pursuant to clause 3(c)(3) of rule XIII, at the time this 
report was filed, the cost estimate prepared by the Director of 
the Congressional Budget Office pursuant to section 402 of the 
Congressional Budget Act of 1974 was not available.

                       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.

         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 and make improvements to activities and programs 
relating to autism spectrum disorder.

                    Duplication of Federal Programs

    Pursuant to clause 3(c)(5) of rule XIII, no provision of 
H.R. 7213 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.

              Related Committee and Subcommittee Hearings

    Pursuant to clause 3(c)(6) of rule XIII, the following 
related hearing was used to develop or consider H.R. 7213:
           On February 14, 2024, the Subcommittee on 
        Health held a hearing on H.R. 7213. The title of the 
        hearing was ``Legislative Proposals to Support Patients 
        and Caregivers.'' The Subcommittee received testimony 
        from:
                   Andy Shih, PhD, Chief Science 
                Officer, Autism Speaks;
                   Corey Feist, JD, MBA, Co-Founder 
                and CEO, Dr. Lorna Breen Heroes' Foundation;
                   Joanne Pike, DrPH, President and 
                CEO, Alzheimer's Association;
                   Gordon Tomaselli, MD, Former 
                President, American Heart Association; Marilyn 
                and Stanley M. Katz Dean, Emeritus and 
                Professor of Medicine, Albert Einstein College 
                of Medicine; Adjunct Professor of Medicine, 
                Johns Hopkins University School of Medicine;
                   Michelle Whitten, President, 
                CEO, and Co-Founder, Global Down Syndrome 
                Foundation;
                   Randy Strozyk, President, 
                American Ambulance Association; and
                   Christina Annunziata, MD, PhD, 
                Senior Vice President of Extramural Discovery 
                Science, American Cancer Society.

                        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. At the time this report was 
filed, the estimate was not available.

       Earmark, 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. 7213 contains no earmarks, limited 
tax benefits, or limited tariff benefits.

                      Advisory Committee Statement

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

                  Applicability to Legislative Branch

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

             Section-by-Section Analysis of the Legislation


Section 1. Short title

    Section 1 provides that the Act may be cited as the 
``Autism Collaboration, Accountability, Research, Education, 
and Support Act of 2024,'' or the ``Autism CARES Act of 2024''.

Section 2. National Institutes of Health activities

    Section 2 expands and improves coordination of research 
related to autism spectrum disorder within the National 
Institutes of Health (NIH), including by ensuring such research 
reflects the entire population of individuals with autism 
spectrum disorder, and is informed by opportunities for public 
input. This section also increases the minimum number of 
currently existing centers of excellence from five to six.

Section 3. Programs relating to autism

    Section 3 enhances existing education, early detection, and 
intervention training efforts by including parents and 
guardians as eligible participants and ensuring such efforts 
will appropriately serve patients with autism spectrum 
disorder. This section also requires the Interagency Autism 
Coordinating Committee (IACC) to develop updated strategic 
plans and reports, including progress made to implement the 
recommendations and strategies. In addition, this section 
requires a professional judgment budget for carrying out the 
strategic plan.

         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 italics, 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 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, local, and Tribal public health 
        officials, private sector developmental disability 
        researchers, and advocates for individuals with autism 
        spectrum disorder 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, 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] causes, and life 
        course 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 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.
          (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)).
          (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, 
[2024] 2029.

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 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 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] subsequent 
        interventions and services.
  (b) In General.--The Secretary shall, subject to the 
availability of appropriations, establish and evaluate 
activities to--
          (1) provide [culturally competent information] 
        culturally and linguistically responsive information 
        and education on autism spectrum disorder and other 
        developmental disabilities to increase public awareness 
        of developmental milestones;
          (2) [promote research] promote research, which may 
        include community-based participatory research, into 
        the development and validation of reliable [screening 
        tools] screening and diagnostic tools for individuals 
        with autism spectrum disorder and other developmental 
        disabilities and disseminate information regarding 
        those [screening tools] screening and diagnostic tools;
          (3) promote early screening of individuals [at higher 
        risk] at increased likelihood 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, which may include such individuals 
        utilizing parents and guardians trained to provide 
        interventions, services, and supports;
          (5) increase the number of individuals who are able 
        to confirm or rule out a diagnosis of autism spectrum 
        disorder and other developmental disabilities;
          (6) increase the number of individuals able to 
        provide evidence-based interventions for individuals 
        diagnosed with autism spectrum disorder or other 
        developmental disabilities; and
          (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] culturally and 
        linguistically responsive 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 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,] advocates, self-advocates, 
                        or authorized representatives; 
                        providers; and other appropriate 
                        individuals in the State, comprehensive 
                        [culturally competent information] 
                        culturally and linguistically 
                        responsive 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 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.]
          (1) Training.--The Secretary, in coordination with 
        activities conducted under title V of the Social 
        Security Act, shall, subject to the availability of 
        appropriations, strengthen the capacity of existing 
        training programs and expand existing interdisciplinary 
        training opportunities or opportunities to increase the 
        number of programs that address the health and well-
        being of individuals who have or are at increased 
        likelihood for autism spectrum disorder and other 
        neurodevelopmental disabilities across their lifespan. 
        Activities under the preceding sentence shall include--
                  (A) awarding competitive grants or 
                cooperative agreements 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) ensuring that trainees under such 
                training programs--
                          (i) receive an appropriate balance of 
                        academic, clinical, and community 
                        opportunities;
                          (ii) are culturally and 
                        linguistically responsive;
                          (iii) are from various backgrounds;
                          (iv) demonstrate a capacity to 
                        evaluate, diagnose or rule out, 
                        develop, and provide evidence-based 
                        interventions and programs to 
                        individuals with autism spectrum 
                        disorder and other developmental 
                        disabilities across their lifespan; and
                          (v) demonstrate an ability to use a 
                        person- and 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);
                  (C) ensuring that program sites provide 
                culturally and linguistically responsive 
                services; and
                  (D) encouraging training programs to partner 
                with appropriate entities to build community 
                capacity.
          (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)).
                  (C) Report.--Not later than 2 years after 
                September 30, 2024, the Comptroller General of 
                the United States shall prepare and submit to 
                the Committee on Energy and Commerce of the 
                House of Representatives and the Committee on 
                Health, Education, Labor, and Pensions of the 
                Senate a report examining how to increase the 
                number of developmental-behavioral 
                pediatricians, including through the 
                developmental behavioral pediatrician training 
                program.
          (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.
          (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] 
promote research, including community-based participatory 
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] 
physical and behavioral health, and communication needs, 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] disseminate information relating to such research 
and guidelines to improve the quality of life and long-term 
outcomes.
  (g) Sunset.--This section shall not apply after September 30, 
[2024] 2029.

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] develop and update 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] make and update 
        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] make and update 
        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. ]
          (5) develop and update 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, and across the entire 
        population of individuals with autism spectrum 
        disorder, including the full range of cognitive, 
        communicative, behavioral, and adaptive functioning, as 
        well as co-occurring conditions and needs for support 
        and services, including care necessary for physical 
        safety, which such plan shall include proposed 
        budgetary requirements and 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 the Congress and President--
                  (A) an annual update on the summary of 
                advances described in paragraph (2); and
                  (B) each update to the strategic plan 
                described in paragraph (5), including any steps 
                that have already been taken to implement the 
                recommendations in such updated strategic plan 
                and progress made in achieving the goals 
                outlined in such updated 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 three such members shall be 
                individuals with a diagnosis of autism spectrum 
                disorder;
                  (B) at least three such members shall be 
                parents or legal guardians of an individual 
                with an autism spectrum disorder; and
                  (C) 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 
                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, 
[2024] 2029, 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 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.]
          (1) In general.--Not later than 4 years after 
        September 30, 2024, the Secretary, in consultation and 
        coordination with other Federal departments and 
        agencies that serve individuals with autism spectrum 
        disorder, 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, and make publicly available, 
        including through posting on the internet website of 
        the Department of Health and Human Services, a progress 
        report on activities related to autism spectrum 
        disorder and other developmental disabilities. Such 
        report shall include activities and research related to 
        the entire population of individuals with autism 
        spectrum disorder, including the full range of 
        cognitive, communicative, behavioral, and adaptive 
        functioning, as well as co-occurring conditions and 
        needs for support and services, including care 
        necessary for physical safety.
          (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 2019] Autism CARES Act of 2024;
                  (B) a description of the amounts expended on 
                the implementation of the amendments made by 
                the [Autism CARES Act of 2019] Autism CARES Act 
                of 2024;
                  (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 2019] Autism CARES Act 
                of 2024 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 2019] Autism CARES Act of 
                2024 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 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;
                  (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 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 2019] 
        Autism CARES Act of 2024, 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 factors associated with the 
                health and well-being of individuals with 
                autism spectrum disorder;
                  (B) an overview of policies and programs 
                relevant to the health and well-being of 
                individuals with autism spectrum disorder, 
                including an identification of existing Federal 
                laws, regulations, policies, research, and 
                programs;
                  (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.
  (c) Update on Young Adults and Youth Transitioning to 
Adulthood.--Not later than 2 years after the date of enactment 
of the Autism CARES Act of 2024, the Secretary, in coordination 
with other Federal departments and agencies that serve 
individuals with autism spectrum disorder, shall prepare and 
submit to the Committee on Energy and Commerce of the House of 
Representatives and the Committee on Health, Education, Labor, 
and Pensions of the Senate an update to the report required 
pursuant to section 6 of the Autism Cares Act of 2014 (Public 
Law 113-157) 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.
  (d) Professional Judgment Budget.--For each fiscal year 
through fiscal year 2029, the Director of the National 
Institutes of Health, in coordination with other relevant 
agencies, as appropriate, shall prepare and submit, directly to 
the President for review and transmittal to Congress, after 
reasonable opportunity for comment, but without change, by the 
Secretary and the Interagency Autism Coordinating Committee 
established under section 399CC(a), an annual budget estimate 
for carrying out the strategic plan developed and updated under 
section 399CC(b)(5).

SEC. 399EE. AUTHORIZATION OF APPROPRIATIONS.

  (a) Developmental Disabilities Surveillance and Research 
Program.--To carry out section 399AA, there is authorized to be 
appropriated [$23,100,000 for each of fiscal years 2020 through 
2024] $28,100,000 for each of fiscal years 2025 through 2029.
  (b) Autism Education, Early Detection, and Intervention.--To 
carry out section 399BB, there is authorized to be appropriated 
[$50,599,000 for each of fiscal years 2020 through 2024] 
$56,344,000 for each of fiscal years 2025 through 2029.
  (c) Interagency Autism Coordinating Committee; Certain Other 
Programs.--To carry out sections 399CC and 409C, [there are 
authorized to be appropriated $296,000,000 for each of fiscal 
years 2020 through 2024] there is authorized to be appropriated 
$341,000,000 for each of fiscal years 2025 through 2029.

           *       *       *       *       *       *       *


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, toxicology, and interventions to 
        maximize outcomes for individuals with 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.]
          (1) Expansion of activities.--The Director of NIH (in 
        this section referred to as the ``Director''), in 
        coordination and consultation with the Administrator of 
        the Administration for Community Living, and other 
        agencies as appropriate, shall--
                  (A) 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--
                          (i) basic and clinical research in 
                        fields including pathology, 
                        developmental neurobiology, genetics, 
                        epigenetics, pharmacology, nutrition, 
                        immunology, neuroimmunology, 
                        neurobehavioral development, 
                        endocrinology, gastroenterology, 
                        toxicology, speech, language and 
                        hearing science, psychiatry, 
                        psychology, developmental behavioral 
                        pediatrics, and gerontology; and
                          (ii) research on interventions to 
                        maximize outcomes for individuals with 
                        autism spectrum disorder; and
                  (B) ensure that research referred to in 
                subparagraph (A)--
                          (i) investigates the causes 
                        (including possible environmental 
                        causes), diagnosis or ruling out, early 
                        and ongoing detection, prevention, 
                        intervention, services, supports across 
                        the lifespan for autistic individuals 
                        and caregivers, and treatment for 
                        autism spectrum disorder and co-
                        occurring conditions, including 
                        dissemination and implementation of 
                        clinical care, supports, interventions, 
                        and treatments; and
                          (ii) reflects the entire population 
                        of individuals with autism spectrum 
                        disorder, including the full range of 
                        cognitive, communicative, behavioral, 
                        and adaptive functioning, as well as 
                        co-occurring conditions and needs for 
                        support and services, including care 
                        necessary for physical safety.
          (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 causes, diagnosis, early and 
        ongoing detection, [prevention, and treatment] 
        prevention, services, and treatment of autism spectrum 
        disorder across the lifespan. The centers, as a group, 
        shall conduct research [including the fields] including 
        in the fields of developmental neurobiology, genetics, 
        genomics, psychopharmacology, developmental psychology, 
        [behavioral psychology, and clinical psychology] 
        behavioral psychology, clinical psychology, and 
        gerontology.
          (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] not fewer than six 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] period 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.]
  (d) Public Input.--
          (1) In general.--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.
          (2) Opportunities.--Such public input opportunities 
        may include encouraging the centers under subsection 
        (b)(1) to establish an external advisory board or 
        adopting a comprehensive plan to ensure individuals 
        with various backgrounds and perspectives are 
        represented, among other activities. Such opportunities 
        should consider including, as appropriate, individuals, 
        family members, and caregivers of individuals with 
        autism spectrum disorder who represent the entire 
        population of individuals with autism spectrum 
        disorder, including the full range of cognitive, 
        communicative, behavioral, and adaptive functioning, to 
        better inform research findings and future studies.

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