113 HR 7213 RH: Autism Collaboration, Accountability, Research, Education, and Support Act of 2024
U.S. House of Representatives
2024-07-30
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Union Calendar No. 518
118th CONGRESS
2d Session
H. R. 7213
[Report No. 118–620]
IN THE HOUSE OF REPRESENTATIVES
February 1, 2024
Mr. Smith of New Jersey (for himself and Mr. Cuellar) introduced the following bill; which was referred to the Committee on Energy and Commerce
July 30, 2024
Additional sponsors: Mr. Carter of Georgia, Mrs. Dingell, Mr. Molinaro, Ms. Kuster, Mr. Fitzpatrick, Mr. Moulton, Mr. Kean of New Jersey, Mr. Soto, Mr. Kiley, Mr. Gottheimer, Mr. Davis of North Carolina, Ms. Matsui, Mr. Stauber, Ms. Clarke of New York, Mr. Bacon, Ms. Spanberger, Mr. Harder of California, Ms. Tlaib, Mr. Moore of Utah, Ms. Slotkin, Ms. Omar, Mr. Joyce of Pennsylvania, Mr. Kim of New Jersey, Ms. Blunt Rochester, Ms. Kaptur, Ms. Salazar, Ms. Tenney, Mr. Harris, Mr. Van Drew, Mrs. Miller of West Virginia, Mr. Graves of Louisiana, Mr. Larson of Connecticut, Ms. Waters, Ms. Sewell, Mr. Suozzi, Mr. Panetta, Mrs. Peltola, Mr. Ryan, Mr. Lawler, Mr. Pappas, Ms. Adams, Mr. Kelly of Pennsylvania, Mr. Van Orden, Mr. Neguse, Ms. Stevens, Ms. Budzinski, Mr. Bilirakis, Ms. Pingree, Ms. Tokuda, Ms. Pettersen, Mr. Courtney, Mr. Landsman, Mr. Jackson of Illinois, Mr. Thompson of Pennsylvania, Mr. Pocan, Mr. Schneider, Ms. Lee of Nevada, Mr. Williams of New York, Mr. Meuser, and Mr. Crow
July 30, 2024
Reported with amendments, committed to the Committee of the Whole House on the State of the Union, and ordered to be printed
Strike out all after the enacting clause and insert the part printed in italic
For text of introduced bill, see copy of bill as introduced on February 1, 2024
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 / reauthorize certain programs with respect to autism spectrum disorder?], and for other purposes.
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”.
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.”.
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.”.
July 30, 2024
Reported with amendments, committed to the Committee of the Whole House on the State of the Union, and ordered to be printed