II 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, Edu- cation, Labor, and Pensions A BILL To authorize the Secretary of Health and Human Services, acting through the Administrator of the Health Re- sources and Services Administration, to award grants for providing evidence-based caregiver skills training to family caregivers of children with autism spectrum dis- order or other developmental disabilities or delays, and for other purposes. Be it enacted by the Senate and House of Representa- 1 tives of the United States of America in Congress assembled, 2 VerDate Sep 11 2014 01:17 May 06, 2023 Jkt 039200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\S1333.IS S1333 pbinns on DSKJLVW7X2PROD with $$_JOB 2 •S 1333 IS SECTION 1. SHORT TITLE. 1 This Act may be cited as the ‘‘Autism Family Care- 2 givers Act of 2023’’. 3 SEC. 2. CAREGIVER SKILLS TRAINING PILOT PROGRAM. 4 (a) AUTHORIZATION.—The Secretary shall carry out 5 a program, to be known as the Caregiver Skills Training 6 Pilot Program, under which the Secretary shall award 7 grants to eligible entities to provide evidence-based care- 8 giver skills training to family caregivers of children with 9 autism spectrum disorder or other developmental disabil- 10 ities or delays, for the purposes of— 11 (1) improving the well-being of children and 12 their caregivers; and 13 (2) teaching caregivers of such children evi- 14 denced-based intervention strategies to promote— 15 (A) improvement in the well-being of such 16 children and their caregivers; and 17 (B) the greater inclusion of such children 18 in family and community life. 19 (b) ELIGIBILITY.—To be eligible to receive a grant 20 under subsection (a), an entity shall be— 21 (1) a nonprofit or other community-based orga- 22 nization; 23 (2) a Federally qualified health center; 24 (3) an academic health center; 25 (4) a health system; or 26 VerDate Sep 11 2014 01:17 May 06, 2023 Jkt 039200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\S1333.IS S1333 pbinns on DSKJLVW7X2PROD with $$_JOB 3 •S 1333 IS (5) a collaboration or consortium of 2 or more 1 entities listed in paragraphs (1) through (4). 2 (c) APPLICATION.—To seek a grant under this sec- 3 tion, an eligible entity shall submit to the Secretary an 4 application that includes— 5 (1) a description of— 6 (A) the applicant’s experience delivering 7 evidence-based caregiver skills training to fam- 8 ily caregivers of children with autism spectrum 9 disorder or other developmental disabilities or 10 delays; 11 (B) the activities that the applicant pro- 12 poses to carry out through the grant; and 13 (C) how such activities will achieve the 14 purposes described in subsection (a); and 15 (2) a plan for— 16 (A) coordination with community-based or- 17 ganizations, State and local early intervention 18 providers, State Medicaid systems, schools, and 19 other providers of early intervening services; 20 (B) collaboration with health care payors 21 (including public and private insurance), State 22 departments of insurance, health plans, and 23 other relevant payors; 24 VerDate Sep 11 2014 01:17 May 06, 2023 Jkt 039200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\S1333.IS S1333 pbinns on DSKJLVW7X2PROD with $$_JOB 4 •S 1333 IS (C) expanding the skills training program 1 proposed to be carried out through the grant; 2 (D) achieving sustainability of such pro- 3 gram; and 4 (E) establishing and maintaining a stake- 5 holder implementation committee under sub- 6 section (f). 7 (d) SELECTION OF GRANTEES.— 8 (1) SELECTION CRITERIA.—In awarding a 9 grant to an eligible entity or a collaboration or con- 10 sortium of 2 or more entities described in subsection 11 (b), the Secretary shall require at least one of the 12 recipients to— 13 (A) have at least 3 years of demonstrated 14 experience— 15 (i) delivering culturally competent 16 services for children with autism spectrum 17 disorder or other developmental delays or 18 disabilities, as well as collaborating directly 19 with their families, including in medically 20 underserved communities; 21 (ii) providing services to children with 22 autism spectrum disorder or other develop- 23 mental delays or disabilities, as well as col- 24 laborating directly with their families; 25 VerDate Sep 11 2014 01:17 May 06, 2023 Jkt 039200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\S1333.IS S1333 pbinns on DSKJLVW7X2PROD with $$_JOB 5 •S 1333 IS (iii) providing individual caregiver 1 coaching to caregivers of children with au- 2 tism spectrum disorder or other develop- 3 mental delays or disabilities; and 4 (iv) working with self-advocates or 5 adults with autism spectrum disorder or 6 other developmental delays or disabilities; 7 and 8 (B) demonstrate the ability to access re- 9 sources from and collaborate with— 10 (i) health care providers; 11 (ii) allied health professionals; 12 (iii) educators; 13 (iv) social workers; and 14 (v) nonprofessional family caregivers 15 who assist with daily living and develop- 16 mental activities, including for children 17 with autism spectrum disorder or other de- 18 velopmental delays or disabilities. 19 (2) REDUCING DISPARITIES.—In awarding 20 grants under this section, the Secretary may con- 21 sider, as appropriate, the extent to which an eligible 22 entity can deliver evidence-based, culturally com- 23 petent caregiver skills training programs for children 24 with autism spectrum disorder or other develop- 25 VerDate Sep 11 2014 01:17 May 06, 2023 Jkt 039200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\S1333.IS S1333 pbinns on DSKJLVW7X2PROD with $$_JOB 6 •S 1333 IS mental delays or disabilities from diverse racial, eth- 1 nic, geographic, or linguistic backgrounds. 2 (e) USE OF FUNDS.—The recipient of a grant under 3 this section shall use the grant— 4 (1) to provide, at no or minimal cost to partici- 5 pants— 6 (A) evidence-based caregiver skills training 7 to family caregivers of children with autism 8 spectrum disorder or other developmental 9 delays or disabilities; and 10 (B) such training in areas related to chil- 11 dren’s learning and development, including— 12 (i) communication skills; 13 (ii) social engagement; 14 (iii) daily living skills; and 15 (iv) caregiver response strategies to 16 severe and challenging behaviors; and 17 (2) to establish and maintain a stakeholder im- 18 plementation committee under subsection (f). 19 (f) STAKEHOLDER IMPLEMENTATION COMMITTEE.— 20 (1) IN GENERAL.—As a condition on receipt of 21 a grant under this section, an eligible entity shall 22 agree to use the grant to establish and maintain a 23 stakeholder implementation committee to advise on 24 VerDate Sep 11 2014 01:17 May 06, 2023 Jkt 039200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\S1333.IS S1333 pbinns on DSKJLVW7X2PROD with $$_JOB 7 •S 1333 IS ensuring that the training provided pursuant to the 1 grant is accessible and culturally relevant. 2 (2) COMPOSITION.—The members of the stake- 3 holder implementation committee shall all be from 4 the local community served pursuant to the grant 5 (or the relevant metropolitan statistical area) and 6 shall include, at a minimum, the following: 7 (A) Family caregivers of children with au- 8 tism or other developmental disabilities, includ- 9 ing autistic caregivers and other caregivers with 10 disabilities. 11 (B) Pediatric health care and early inter- 12 vention providers with experience providing 13 services to children with autism or other devel- 14 opmental delays or disabilities. 15 (C) Educators with experience working 16 with children with autism or other develop- 17 mental delays or disabilities. 18 (D) Representatives of local organizations 19 familiar with the cultural values and priorities 20 of individuals in the local community. 21 (E) Local government officials. 22 (g) REQUIREMENTS.— 23 (1) NUMBER OF RECIPIENTS AND STATES.— 24 The Secretary shall award grants under subsection 25 VerDate Sep 11 2014 01:17 May 06, 2023 Jkt 039200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\S1333.IS S1333 pbinns on DSKJLVW7X2PROD with $$_JOB 8 •S 1333 IS (a) to not fewer than 25 eligible entities in not fewer 1 than 15 States. 2 (2) AMOUNT.—The total amount of each grant 3 awarded under subsection (a) shall be not less than 4 $500,000 over a 5-year period. 5 (h) SUPPLEMENT NOT SUPPLANT.—Amounts re- 6 ceived through a grant under this section shall be used 7 to supplement, not supplant, other amounts received to 8 provide— 9 (1) behavioral, medical, habilitative, and other 10 services covered by the Medicaid program or private 11 health insurance; 12 (2) services provided under the Individuals with 13 Disabilities Education Act (20 U.S.C. 1400 et seq.); 14 or 15 (3) adaptations of a training program using evi- 16 dence-based approaches to serve children of different 17 ages, communities, and underrepresented groups. 18 (i) ACTIVITIES OF THE SECRETARY.—The Secretary 19 shall— 20 (1) assist recipients of grants under subsection 21 (a) in— 22 (A) the implementation of caregiver skills 23 training programs using lessons learned from 24 other evidenced-based activities or caregiver 25 VerDate Sep 11 2014 01:17 May 06, 2023 Jkt 039200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\S1333.IS S1333 pbinns on DSKJLVW7X2PROD with $$_JOB 9 •S 1333 IS programs conducted or supported by the Health 1 Resources and Services Administration; 2 (B) ensuring the programs of the recipi- 3 ents assist medically underserved communities, 4 when possible; and 5 (C) developing plans for achieving sustain- 6 ability of the programs of the recipients; 7 (2) conduct an annual evaluation of activities 8 funded through grants under subsection (a), in con- 9 sultation with the grant recipients, including evalua- 10 tion of the effectiveness of such grants at improving 11 health outcomes and quality of life for children with 12 autism spectrum disorder or other developmental 13 delays or disabilities and their family caregivers; and 14 (3) convene at least one national or regional 15 meeting of such grant recipients to discuss best 16 practices. 17 (j) REPORTS.— 18 (1) INITIAL REPORT.—Not later than 6 months 19 after awarding the first grant under subsection (a), 20 the Secretary shall submit to the Committees on Ap- 21 propriations of the House of Representatives and the 22 Senate, and to other appropriate congressional com- 23 mittees, a report on the implementation of this sec- 24 tion. Such report shall include— 25 VerDate Sep 11 2014 01:17 May 06, 2023 Jkt 039200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\S1333.IS S1333 pbinns on DSKJLVW7X2PROD with $$_JOB 10 •S 1333 IS (A) how many grants have been awarded; 1 (B) the name and location of the grant re- 2 cipients; 3 (C) the communities impacted by the 4 grants; 5 (D) a description of the kind of activities 6 to be carried out with the grants; 7 (E) an analysis, conducted by the Sec- 8 retary, based on the evaluation under sub- 9 section (i)(2), of the effectiveness of such 10 grants at improving health outcomes and qual- 11 ity of life for children with autism or other de- 12 velopmental delays or disabilities and their fam- 13 ily caregivers; and 14 (F) best practices to increase access to 15 caregiver skills training programs described in 16 subsection (a) in medically underserved commu- 17 nities. 18 (2) FINAL REPORT.—Not later than the end of 19 fiscal year 2027, the Secretary shall submit to the 20 Committees on Appropriations of the House of Rep- 21 resentatives and the Senate, and to other appro- 22 priate congressional committees, a final report on 23 the implementation of this section, including— 24 VerDate Sep 11 2014 01:17 May 06, 2023 Jkt 039200 PO 00000 Frm 00010 Fmt 6652 Sfmt 6201 E:\BILLS\S1333.IS S1333 pbinns on DSKJLVW7X2PROD with $$_JOB 11 •S 1333 IS (A) the information, analysis, and best 1 practices listed in subparagraphs (A) through 2 (F) of paragraph (1); and 3 (B) recommendations on how to expand 4 and extend the program under this section. 5 (k) DEFINITIONS.—In this section: 6 (1) The term ‘‘family caregiver’’ means an 7 adult family member or other individual who has a 8 significant relationship with, and who provides a 9 broad range of assistance to, a child between the 10 ages of 0 and 9 diagnosed with autism spectrum dis- 11 order or other developmental disabilities or delays. 12 (2) The term ‘‘Federally qualified health cen- 13 ter’’ has the meaning given the term in section 14 1861(aa) of the Social Security Act (42 U.S.C. 15 1395x(aa)). 16 (3) The term ‘‘Secretary’’ means the Secretary 17 of Health and Human Services, acting through the 18 Administrator of the Health Resources and Services 19 Administration. 20 (l) AUTHORIZATION OF APPROPRIATIONS.—To carry 21 out this section, there is authorized to be appropriated 22 $10,000,000 for each of fiscal years 2024 through 2028. 23 Æ VerDate Sep 11 2014 01:17 May 06, 2023 Jkt 039200 PO 00000 Frm 00011 Fmt 6652 Sfmt 6301 E:\BILLS\S1333.IS S1333 pbinns on DSKJLVW7X2PROD with $$_JOB