Autism Family Caregivers Act of 2023
This bill establishes a pilot program to provide training for caregivers on improving the well-being of children with autism spectrum disorder and other developmental disabilities or delays.
To carry out the program, the Health Resources and Services Administration (HRSA) must award grants to, among other eligible entities, health systems and nonprofits to provide the training. HRSA must also establish a national center to provide technical assistance to grant recipients and to evaluate the program.
[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[S. 1333 Introduced in Senate (IS)]
<DOC>
118th CONGRESS
1st Session
S. 1333
To authorize the Secretary of Health and Human Services, acting through
the Administrator of the Health Resources and Services Administration,
to award grants for providing evidence-based caregiver skills training
to family caregivers of children with autism spectrum disorder or other
developmental disabilities or delays, and for other purposes.
_______________________________________________________________________
IN THE SENATE OF THE UNITED STATES
April 27, 2023
Mr. Menendez (for himself and Ms. Collins) introduced the following
bill; which was read twice and referred to the Committee on Health,
Education, Labor, and Pensions
_______________________________________________________________________
A BILL
To authorize the Secretary of Health and Human Services, acting through
the Administrator of the Health Resources and Services Administration,
to award grants for providing evidence-based caregiver skills training
to family caregivers of children with autism spectrum disorder or other
developmental disabilities or delays, and for other purposes.
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Autism Family Caregivers Act of
2023''.
SEC. 2. CAREGIVER SKILLS TRAINING PILOT PROGRAM.
(a) Authorization.--The Secretary shall carry out a program, to be
known as the Caregiver Skills Training Pilot Program, under which the
Secretary shall award grants to eligible entities to provide evidence-
based caregiver skills training to family caregivers of children with
autism spectrum disorder or other developmental disabilities or delays,
for the purposes of--
(1) improving the well-being of children and their
caregivers; and
(2) teaching caregivers of such children evidenced-based
intervention strategies to promote--
(A) improvement in the well-being of such children
and their caregivers; and
(B) the greater inclusion of such children in
family and community life.
(b) Eligibility.--To be eligible to receive a grant under
subsection (a), an entity shall be--
(1) a nonprofit or other community-based organization;
(2) a Federally qualified health center;
(3) an academic health center;
(4) a health system; or
(5) a collaboration or consortium of 2 or more entities
listed in paragraphs (1) through (4).
(c) Application.--To seek a grant under this section, an eligible
entity shall submit to the Secretary an application that includes--
(1) a description of--
(A) the applicant's experience delivering evidence-
based caregiver skills training to family caregivers of
children with autism spectrum disorder or other
developmental disabilities or delays;
(B) the activities that the applicant proposes to
carry out through the grant; and
(C) how such activities will achieve the purposes
described in subsection (a); and
(2) a plan for--
(A) coordination with community-based
organizations, State and local early intervention
providers, State Medicaid systems, schools, and other
providers of early intervening services;
(B) collaboration with health care payors
(including public and private insurance), State
departments of insurance, health plans, and other
relevant payors;
(C) expanding the skills training program proposed
to be carried out through the grant;
(D) achieving sustainability of such program; and
(E) establishing and maintaining a stakeholder
implementation committee under subsection (f).
(d) Selection of Grantees.--
(1) Selection criteria.--In awarding a grant to an eligible
entity or a collaboration or consortium of 2 or more entities
described in subsection (b), the Secretary shall require at
least one of the recipients to--
(A) have at least 3 years of demonstrated
experience--
(i) delivering culturally competent
services for children with autism spectrum
disorder or other developmental delays or
disabilities, as well as collaborating directly
with their families, including in medically
underserved communities;
(ii) providing services to children with
autism spectrum disorder or other developmental
delays or disabilities, as well as
collaborating directly with their families;
(iii) providing individual caregiver
coaching to caregivers of children with autism
spectrum disorder or other developmental delays
or disabilities; and
(iv) working with self-advocates or adults
with autism spectrum disorder or other
developmental delays or disabilities; and
(B) demonstrate the ability to access resources
from and collaborate with--
(i) health care providers;
(ii) allied health professionals;
(iii) educators;
(iv) social workers; and
(v) nonprofessional family caregivers who
assist with daily living and developmental
activities, including for children with autism
spectrum disorder or other developmental delays
or disabilities.
(2) Reducing disparities.--In awarding grants under this
section, the Secretary may consider, as appropriate, the extent
to which an eligible entity can deliver evidence-based,
culturally competent caregiver skills training programs for
children with autism spectrum disorder or other developmental
delays or disabilities from diverse racial, ethnic, geographic,
or linguistic backgrounds.
(e) Use of Funds.--The recipient of a grant under this section
shall use the grant--
(1) to provide, at no or minimal cost to participants--
(A) evidence-based caregiver skills training to
family caregivers of children with autism spectrum
disorder or other developmental delays or disabilities;
and
(B) such training in areas related to children's
learning and development, including--
(i) communication skills;
(ii) social engagement;
(iii) daily living skills; and
(iv) caregiver response strategies to
severe and challenging behaviors; and
(2) to establish and maintain a stakeholder implementation
committee under subsection (f).
(f) Stakeholder Implementation Committee.--
(1) In general.--As a condition on receipt of a grant under
this section, an eligible entity shall agree to use the grant
to establish and maintain a stakeholder implementation
committee to advise on ensuring that the training provided
pursuant to the grant is accessible and culturally relevant.
(2) Composition.--The members of the stakeholder
implementation committee shall all be from the local community
served pursuant to the grant (or the relevant metropolitan
statistical area) and shall include, at a minimum, the
following:
(A) Family caregivers of children with autism or
other developmental disabilities, including autistic
caregivers and other caregivers with disabilities.
(B) Pediatric health care and early intervention
providers with experience providing services to
children with autism or other developmental delays or
disabilities.
(C) Educators with experience working with children
with autism or other developmental delays or
disabilities.
(D) Representatives of local organizations familiar
with the cultural values and priorities of individuals
in the local community.
(E) Local government officials.
(g) Requirements.--
(1) Number of recipients and states.--The Secretary shall
award grants under subsection (a) to not fewer than 25 eligible
entities in not fewer than 15 States.
(2) Amount.--The total amount of each grant awarded under
subsection (a) shall be not less than $500,000 over a 5-year
period.
(h) Supplement Not Supplant.--Amounts received through a grant
under this section shall be used to supplement, not supplant, other
amounts received to provide--
(1) behavioral, medical, habilitative, and other services
covered by the Medicaid program or private health insurance;
(2) services provided under the Individuals with
Disabilities Education Act (20 U.S.C. 1400 et seq.); or
(3) adaptations of a training program using evidence-based
approaches to serve children of different ages, communities,
and underrepresented groups.
(i) Activities of the Secretary.--The Secretary shall--
(1) assist recipients of grants under subsection (a) in--
(A) the implementation of caregiver skills training
programs using lessons learned from other evidenced-
based activities or caregiver programs conducted or
supported by the Health Resources and Services
Administration;
(B) ensuring the programs of the recipients assist
medically underserved communities, when possible; and
(C) developing plans for achieving sustainability
of the programs of the recipients;
(2) conduct an annual evaluation of activities funded
through grants under subsection (a), in consultation with the
grant recipients, including evaluation of the effectiveness of
such grants at improving health outcomes and quality of life
for children with autism spectrum disorder or other
developmental delays or disabilities and their family
caregivers; and
(3) convene at least one national or regional meeting of
such grant recipients to discuss best practices.
(j) Reports.--
(1) Initial report.--Not later than 6 months after awarding
the first grant under subsection (a), the Secretary shall
submit to the Committees on Appropriations of the House of
Representatives and the Senate, and to other appropriate
congressional committees, a report on the implementation of
this section. Such report shall include--
(A) how many grants have been awarded;
(B) the name and location of the grant recipients;
(C) the communities impacted by the grants;
(D) a description of the kind of activities to be
carried out with the grants;
(E) an analysis, conducted by the Secretary, based
on the evaluation under subsection (i)(2), of the
effectiveness of such grants at improving health
outcomes and quality of life for children with autism
or other developmental delays or disabilities and their
family caregivers; and
(F) best practices to increase access to caregiver
skills training programs described in subsection (a) in
medically underserved communities.
(2) Final report.--Not later than the end of fiscal year
2027, the Secretary shall submit to the Committees on
Appropriations of the House of Representatives and the Senate,
and to other appropriate congressional committees, a final
report on the implementation of this section, including--
(A) the information, analysis, and best practices
listed in subparagraphs (A) through (F) of paragraph
(1); and
(B) recommendations on how to expand and extend the
program under this section.
(k) Definitions.--In this section:
(1) The term ``family caregiver'' means an adult family
member or other individual who has a significant relationship
with, and who provides a broad range of assistance to, a child
between the ages of 0 and 9 diagnosed with autism spectrum
disorder or other developmental disabilities or delays.
(2) The term ``Federally qualified health center'' has the
meaning given the term in section 1861(aa) of the Social
Security Act (42 U.S.C. 1395x(aa)).
(3) The term ``Secretary'' means the Secretary of Health
and Human Services, acting through the Administrator of the
Health Resources and Services Administration.
(l) Authorization of Appropriations.--To carry out this section,
there is authorized to be appropriated $10,000,000 for each of fiscal
years 2024 through 2028.
<all>
Introduced in Senate
Read twice and referred to the Committee on Health, Education, Labor, and Pensions.
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