I
One Hundred Sixteenth Congress of the United States of America
At the First Session
Begun and held at the City of Washington on Thursday, the third day of January, two thousand and nineteen
H. R. 1058
AN ACT
To amend the Public Health Service Act to enhance activities of the National Institutes of Health with respect to research on autism spectrum disorder and enhance programs relating to autism, and for other purposes.
Short title
This Act may be cited as the Autism Collaboration, Accountability, Research, Education, and Support Act of 2019
or the Autism CARES Act of 2019
.
Expansion, intensification, and coordination of activities of the NIH with respect to research on autism spectrum disorder
Section 409C of the Public Health Service Act (42 U.S.C. 284g) is amended—
in subsection (a)(1)—
in the first sentence, by striking and toxicology
and inserting toxicology, and interventions to maximize outcomes for individuals with autism spectrum disorder
; and
by striking the second sentence and inserting the following: Such research shall investigate the causes (including possible environmental causes), diagnosis or ruling out, early and ongoing detection, prevention, services across the lifespan, supports, intervention, and treatment of autism spectrum disorder, including dissemination and implementation of clinical care, supports, interventions, and treatments.
;
in subsection (b)—
in paragraph (2)—
in the second sentence, by striking cause
and all that follows through disorder
and inserting causes, diagnosis, early and ongoing detection, prevention, and treatment of autism spectrum disorder across the lifespan
; and
in the third sentence, by striking neurobiology
and all that follows through the period and inserting neurobiology, genetics, genomics, psychopharmacology, developmental psychology, behavioral psychology, and clinical psychology.
; and
in paragraph (3), by adding at the end the following:
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.
.
Programs relating to autism
Developmental disabilities surveillance and research program
Section 399AA of the Public Health Service Act (42 U.S.C. 280i) is amended—
in subsection (a)(1), by striking adults on autism spectrum disorder
and inserting adults with autism spectrum disorder
;
in subsection (a)(2)—
by striking State and local public health officials
and inserting State, local, and Tribal public health officials
;
by striking or other developmental disabilities
and inserting and other developmental disabilities
;
in subsection (a)(3), by striking a university, or any other educational institution
and inserting a university, any other educational institution, an Indian tribe, or a tribal organization
;
in subsection (b)(2)(A), by striking relevant State and local public health officials, private sector developmental disability researchers, and advocates for individuals with developmental disabilities
and inserting State, local, and Tribal public health officials, private sector developmental disability researchers, advocates for individuals with autism spectrum disorder, and advocates for individuals with other developmental disabilities
;
in subsection (d)—
by redesignating paragraphs (1) and (2) as paragraphs (2) and (3), respectively; and
by inserting before paragraph (2), as so redesignated, the following new paragraph:
Indian tribe; tribal organization
The terms Indian tribe
and tribal organization
have the meanings given such terms in section 4 of the Indian Health Care Improvement Act.
; and
in subsection (e), by striking 2019
and inserting 2024
.
Autism education, early detection, and intervention
Section 399BB of the Public Health Service Act (42 U.S.C. 280i–1) is amended—
in subsection (a)(1)—
by striking individuals with autism spectrum disorder or other developmental disabilities
and inserting individuals with autism spectrum disorder and other developmental disabilities
; and
by striking children with autism spectrum disorder
and all that follows through disabilities;
and inserting individuals with autism spectrum disorder and other developmental disabilities across their lifespan;
;
in subsection (b)—
in paragraph (2), by inserting individuals with
before autism spectrum disorder
;
by redesignating paragraphs (4) through (6) as paragraphs (5) through (7), respectively; and
by inserting after paragraph (3) the following:
promote evidence-based screening techniques and interventions for individuals with autism spectrum disorder and other developmental disabilities across their lifespan;
;
in subsection (c)—
in paragraph (1), in the matter preceding subparagraph (A), by striking the needs of individuals with autism spectrum disorder or other developmental disabilities and their families
and inserting the needs of individuals with autism spectrum disorder and other developmental disabilities across their lifespan and the needs of their families
; and
in paragraph (2)—
in subparagraph (A)(ii), by striking caregivers of individuals with an autism spectrum disorder
and inserting caregivers of individuals with autism spectrum disorder or other developmental disabilities
;
in subparagraph (B)(i)(II), by inserting autism spectrum disorder and
after individuals with
; and
in subparagraph (B)(ii), by inserting autism spectrum disorder and
after individuals with
;
in subsection (e)—
in paragraph (1)—
in the matter preceding subparagraph (A), by inserting across their lifespan
before and ensure
; and
in subparagraph (B)(iv), by inserting across their lifespan
after other developmental disabilities
;
by redesignating paragraphs (2) and (3) as paragraphs (3) and (4), respectively; and
by inserting after paragraph (1) the following:
Developmental-behavioral pediatrician training programs
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.
Definition of underserved area
In this paragraph, the term underserved area means—
a health professional shortage area (as defined in section 332(a)(1)(A)); and
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)).
;
in subsection (f), by inserting across the lifespan of such individuals
after other developmental disabilities
; and
in subsection (g), by striking 2019
and inserting 2024
.
Interagency autism coordinating committee
Section 399CC of the Public Health Service Act (42 U.S.C. 280i–2) is amended—
in subsection (b)—
in paragraph (2), by inserting across the lifespan of such individuals
before the semicolon; and
in paragraph (5), by inserting across the lifespan of such individuals
before and the families
;
in subsection (c)—
in paragraph (1)(D), by inserting , the Department of Labor, the Department of Justice, the Department of Veterans Affairs, the Department of Housing and Urban Development,
after Department of Education
;
in subparagraphs (A), (B), and (C) of paragraph (2), by striking at least two such members
each place it appears and inserting at least three such members
;
in paragraph (3)(A), by striking one or more additional 4-year terms
and inserting one additional 4-year term
; and
in subsection (f), by striking 2019
and inserting 2024
.
Reports to Congress
Section 399DD of the Public Health Service Act (42 U.S.C. 280i–3) is amended—
in subsection (a)—
in paragraph (1), by striking Autism CARES Act of 2014
and inserting Autism CARES Act of 2019
; and
in paragraph (2)—
in subparagraphs (A), (B), (D), and (E), by striking Autism CARES Act of 2014
each place it appears and inserting Autism CARES Act of 2019
;
in subparagraph (G), by striking age of the child
and inserting age of the individual
;
in subparagraph (H), by striking ; and
and inserting ;
;
in subparagraph (I), by striking the period and inserting ; and
; and
by adding at the end the following:
information on how States use home- and community-based services and other supports to ensure that individuals with autism spectrum disorder and other developmental disabilities are living, working, and participating in their community.
; and
in subsection (b)—
in the heading, by striking young adults and transitioning youth
and inserting the health and well-Being of individuals with autism spectrum disorder across their lifespan
;
by amending paragraph (1) to read as follows:
In general
Not later than 2 years after the date of enactment of the Autism CARES Act of 2019, the Secretary shall prepare and submit, to the Committee on Health, Education, Labor, and Pensions of the Senate and the Committee on Energy and Commerce of the House of Representatives, a report concerning the health and well-being of individuals with autism spectrum disorder.
; and
in paragraph (2)—
by amending subparagraph (A) to read as follows:
demographic factors associated with the health and well-being of individuals with autism spectrum disorder;
;
in subparagraph (B), by striking young adults
and all that follows through the semicolon and inserting the health and well-being of individuals with autism spectrum disorder, including an identification of existing Federal laws, regulations, policies, research, and programs;
; and
by amending subparagraphs (C), (D), and (E) to read as follows:
recommendations on establishing best practices guidelines to ensure interdisciplinary coordination between all relevant service providers receiving Federal funding;
comprehensive approaches to improving health outcomes and well-being for individuals with autism spectrum disorder, including—
community-based behavioral supports and interventions;
nutrition, recreational, and social activities; and
personal safety services related to public safety agencies or the criminal justice system for such individuals; and
recommendations that seek to improve health outcomes for such individuals, including across their lifespan, by addressing—
screening and diagnosis of children and adults;
behavioral and other therapeutic approaches;
primary and preventative care;
communication challenges;
aggression, self-injury, elopement, and other behavioral issues;
emergency room visits and acute care hospitalization;
treatment for co-occurring physical and mental health conditions;
premature mortality;
medical practitioner training; and
caregiver mental health.
.
Authorization of appropriations
Section 399EE of the Public Health Service Act (42 U.S.C. 280i–4) is amended—
in subsection (a), by striking $22,000,000 for each of fiscal years 2015 through 2019
and inserting $23,100,000 for each of fiscal years 2020 through 2024
;
in subsection (b), by striking $48,000,000 for each of fiscal years 2015 through 2019
and inserting $50,599,000 for each of fiscal years 2020 through 2024
; and
in subsection (c), by striking there is authorized to be appropriated $190,000,000 for each of fiscal years 2015 through 2019
and inserting there are authorized to be appropriated $296,000,000 for each of fiscal years 2020 through 2024
.
Speaker of the House of Representatives.
Vice President of the United States and President of the Senate.