I 118TH CONGRESS 1ST SESSION H. R. 2965 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 HOUSE OF REPRESENTATIVES APRIL 27, 2023 Ms. MENG (for herself, Mr. FITZPATRICK, Mr. CUELLAR, and Mr. MOLINARO) introduced the following bill; which was referred to the Committee on En- ergy and Commerce 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\H2965.IH H2965 pbinns on DSKJLVW7X2PROD with $$_JOB 2 •HR 2965 IH SECTION 1. SHORT TITLE. 1 This Act may be cited as the ‘‘Autism Family Care- 2 givers Act of 2023’’. 3 SEC. 2. CAREGIVER SKILLS TRAINING PILOT PROGRAM. 4 (a) AUTHORIZATION.—The Secretary of Health and 5 Human Services, acting through the Administrator of the 6 Health Resources and Services Administration, shall carry 7 out a program, to be known as the Caregiver Skills Train- 8 ing Pilot Program, under which the Secretary shall award 9 grants to eligible entities to provide evidence-based care- 10 giver skills training to family caregivers of children with 11 autism spectrum disorder or other developmental disabil- 12 ities or delays, for the purposes of— 13 (1) improving the well-being of children and 14 their caregivers; and 15 (2) teaching caregivers of such children evi- 16 denced-based intervention strategies to promote— 17 (A) improvement in the well-being of such 18 children and their caregivers; and 19 (B) the greater inclusion of such children 20 in family and community life. 21 (b) ELIGIBILITY.—To be eligible to receive an award 22 under subsection (a), an entity shall be— 23 (1) a nonprofit or other community-based orga- 24 nization; 25 (2) a Federally qualified health center; 26 VerDate Sep 11 2014 01:17 May 06, 2023 Jkt 039200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H2965.IH H2965 pbinns on DSKJLVW7X2PROD with $$_JOB 3 •HR 2965 IH (3) an academic health center; 1 (4) a health system; or 2 (5) a collaboration or consortium of 2 or more 3 entities listed in paragraphs (1) through (4). 4 (c) APPLICATION.—To seek a grant under this sec- 5 tion, an eligible entity shall submit to the Secretary an 6 application that includes— 7 (1) a description of— 8 (A) the applicant’s experience delivering 9 evidence-based caregiver skills training to fam- 10 ily caregivers of children with autism spectrum 11 disorder or other developmental disabilities or 12 delays; 13 (B) the activities that the applicant pro- 14 poses to carry out through the grant; and 15 (C) how such activities will achieve the 16 purposes described in subsection (a); and 17 (2) a plan for— 18 (A) coordination with community-based or- 19 ganizations, State and local early intervention 20 providers, Medicaid systems, schools, and other 21 providers of early intervening services; 22 (B) collaboration with health care payors 23 (including public and private insurance), State 24 VerDate Sep 11 2014 01:17 May 06, 2023 Jkt 039200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H2965.IH H2965 pbinns on DSKJLVW7X2PROD with $$_JOB 4 •HR 2965 IH departments of insurance, health plans, and 1 other relevant payors; 2 (C) expanding the skills training program 3 proposed to be carried out through the grant; 4 (D) achieving sustainability of such pro- 5 gram; and 6 (E) establishing and maintaining a stake- 7 holder implementation committee under sub- 8 section (f). 9 (d) SELECTION OF GRANTEES.— 10 (1) SELECTION CRITERIA.—In awarding a 11 grant to an eligible entity or a collaboration or con- 12 sortium of 2 or more entities described in subsection 13 (b), the Secretary shall require at least one of the 14 recipients to— 15 (A) have at least 3 years of demonstrated 16 experience— 17 (i) delivering culturally competent 18 services for children with autism spectrum 19 disorder or other developmental delays and 20 disabilities, as well as collaborating directly 21 with their families, including in medically 22 underserved communities; 23 (ii) providing services to children with 24 autism spectrum disorder or other develop- 25 VerDate Sep 11 2014 01:17 May 06, 2023 Jkt 039200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H2965.IH H2965 pbinns on DSKJLVW7X2PROD with $$_JOB 5 •HR 2965 IH mental delays and disabilities, as well as 1 collaborating directly with their families; 2 (iii) providing individual caregiver 3 coaching to caregivers of children with au- 4 tism spectrum disorder or other develop- 5 mental delays and disabilities; and 6 (iv) working with self-advocates or 7 adults with autism spectrum disorder or 8 other developmental delays and disabilities; 9 and 10 (B) demonstrate the ability to access re- 11 sources from and collaborate with— 12 (i) health care providers; 13 (ii) allied health professionals; 14 (iii) educators; 15 (iv) social workers; and 16 (v) nonprofessional family caregivers 17 who assist with daily living and develop- 18 mental activities, including for children 19 with autism spectrum disorder or other de- 20 velopmental delays and disabilities. 21 (2) REDUCING DISPARITIES.—In awarding 22 grants under this section, the Secretary may con- 23 sider, as appropriate, the extent to which an eligible 24 entity can deliver evidence-based, culturally com- 25 VerDate Sep 11 2014 01:17 May 06, 2023 Jkt 039200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H2965.IH H2965 pbinns on DSKJLVW7X2PROD with $$_JOB 6 •HR 2965 IH petent caregiver skills training programs for children 1 with autism spectrum disorder or other develop- 2 mental delays and disabilities from diverse racial, 3 ethnic, geographic, or linguistic backgrounds. 4 (e) USE OF FUNDS.—The recipient of a grant under 5 this section shall use the grant— 6 (1) to provide, at no or minimal cost to partici- 7 pants— 8 (A) evidence-based caregiver skills training 9 to family caregivers of children with autism 10 spectrum disorder or other developmental 11 delays and disabilities; and 12 (B) such training in areas related to chil- 13 dren’s learning and development, including— 14 (i) communication skills; 15 (ii) social engagement; 16 (iii) daily living skills; and 17 (iv) caregiver response strategies to 18 severe and challenging behaviors; and 19 (2) to establish and maintain a stakeholder im- 20 plementation committee under subsection (f). 21 (f) STAKEHOLDER IMPLEMENTATION COMMITTEE.— 22 (1) IN GENERAL.—As a condition on receipt of 23 a grant under this section, an eligible entity shall 24 agree to use the grant to establish and maintain a 25 VerDate Sep 11 2014 01:17 May 06, 2023 Jkt 039200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\H2965.IH H2965 pbinns on DSKJLVW7X2PROD with $$_JOB 7 •HR 2965 IH stakeholder implementation committee to advise on 1 ensuring that the training provided pursuant to the 2 grant is accessible and culturally relevant. 3 (2) COMPOSITION.—The members of the stake- 4 holder implementation committee shall all be from 5 the local community served pursuant to the grant 6 (or the relevant metropolitan statistical area) and 7 shall include, at a minimum, the following: 8 (A) Family caregivers of children with au- 9 tism or other developmental disabilities, includ- 10 ing autistic caregivers and other caregivers with 11 disabilities. 12 (B) Pediatric health care and early inter- 13 vention providers with experience providing 14 services to children with autism or other devel- 15 opmental disabilities and delays. 16 (C) Educators with experience working 17 with children with autism or other develop- 18 mental disabilities and delays. 19 (D) Representatives of local organizations 20 familiar with the cultural values and priorities 21 of individuals in the local community. 22 (E) Local government officials. 23 (g) REQUIREMENTS.— 24 VerDate Sep 11 2014 01:17 May 06, 2023 Jkt 039200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\H2965.IH H2965 pbinns on DSKJLVW7X2PROD with $$_JOB 8 •HR 2965 IH (1) NUMBER OF RECIPIENTS AND STATES.— 1 The Secretary shall award grants under subsection 2 (a) to not fewer than 25 eligible entities in not fewer 3 than 15 States. 4 (2) AMOUNT.—The total amount of each grant 5 awarded under subsection (a) shall be not less than 6 $500,000 over a 5-year period. 7 (h) SUPPLEMENT NOT SUPPLANT.—Amounts re- 8 ceived through a grant under this section shall be used 9 to supplement, not supplant, other amounts received to 10 provide— 11 (1) behavioral, medical, habilitative, and other 12 services covered by the Medicaid program or private 13 health insurance; 14 (2) services provided under the Individuals with 15 Disabilities Education Act (20 U.S.C. 1400 et seq.); 16 or 17 (3) adaptations of a training program using evi- 18 dence-based approaches to serve children of different 19 ages, communities, and underrepresented groups. 20 (i) ACTIVITIES OF THE SECRETARY.—The Secretary, 21 acting through the Administrator of the Health Resources 22 and Services Administration, shall— 23 (1) assist recipients of grants under subsection 24 (a) in— 25 VerDate Sep 11 2014 01:17 May 06, 2023 Jkt 039200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\H2965.IH H2965 pbinns on DSKJLVW7X2PROD with $$_JOB 9 •HR 2965 IH (A) the implementation of caregiver skills 1 training programs using lessons learned from 2 other evidenced-based activities or caregiver 3 programs conducted or supported by the Health 4 Resources and Services Administration; 5 (B) ensuring the programs of the recipi- 6 ents assist medically underserved communities, 7 when possible; and 8 (C) developing plans for achieving sustain- 9 ability of the programs of the recipients; 10 (2) conduct an annual evaluation of activities 11 funded through grants under subsection (a), in con- 12 sultation with the grant recipients, including evalua- 13 tion of the effectiveness of such grants at improving 14 health outcomes and quality of life for children with 15 autism spectrum disorder or other developmental 16 delays and disabilities and their family caregivers; 17 and 18 (3) convene at least one national or regional 19 meeting of such grant recipients to discuss best 20 practices. 21 (j) REPORTS.— 22 (1) INITIAL REPORT.—Not later than 6 months 23 after awarding the first grant under subsection (a), 24 the Secretary shall submit to the Committees on Ap- 25 VerDate Sep 11 2014 01:17 May 06, 2023 Jkt 039200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\H2965.IH H2965 pbinns on DSKJLVW7X2PROD with $$_JOB 10 •HR 2965 IH propriations of the House of Representatives and the 1 Senate, and to other appropriate congressional com- 2 mittees, a report on the implementation of this sec- 3 tion. Such report shall include— 4 (A) how many grants have been awarded; 5 (B) the name and location of the grant re- 6 cipients; 7 (C) the communities impacted by the 8 grants; 9 (D) a description of the kind of activities 10 to be carried out with the grants; 11 (E) an analysis, conducted by the Adminis- 12 trator of the Health Resources and Services Ad- 13 ministration, based on the evaluation under 14 subsection (h)(2), of the effectiveness of such 15 grants at improving health outcomes and qual- 16 ity of life for children with autism or other de- 17 velopmental disabilities or delays and their fam- 18 ily caregivers; and 19 (F) best practices to increase access to 20 caregiver skills training programs described in 21 subsection (a) in medically underserved commu- 22 nities. 23 (2) FINAL REPORT.—Not later than the end of 24 fiscal year 2027, the Secretary shall submit to the 25 VerDate Sep 11 2014 01:17 May 06, 2023 Jkt 039200 PO 00000 Frm 00010 Fmt 6652 Sfmt 6201 E:\BILLS\H2965.IH H2965 pbinns on DSKJLVW7X2PROD with $$_JOB 11 •HR 2965 IH Committees on Appropriations of the House of Rep- 1 resentatives and the Senate, and to other appro- 2 priate congressional committees, a final report on 3 the implementation of this section, including— 4 (A) the information, analysis, and best 5 practices listed in subparagraphs (A) through 6 (F) of paragraph (1); and 7 (B) recommendations on how to expand 8 and extend the program under this section. 9 (k) DEFINITIONS.—In this section: 10 (1) The term ‘‘family caregiver’’ means an 11 adult family member or other individual who has a 12 significant relationship with, and who provides a 13 broad range of assistance to, a child between the 14 ages of 0 and 9 diagnosed with autism spectrum dis- 15 order or other developmental disabilities or delays. 16 (2) The term ‘‘Federally qualified health cen- 17 ter’’ has the meaning given the term in section 18 1861(aa) of the Social Security Act (42 U.S.C. 19 1395x(aa)). 20 (3) The term ‘‘Secretary’’ means the Secretary 21 of Health and Human Services. 22 VerDate Sep 11 2014 01:17 May 06, 2023 Jkt 039200 PO 00000 Frm 00011 Fmt 6652 Sfmt 6201 E:\BILLS\H2965.IH H2965 pbinns on DSKJLVW7X2PROD with $$_JOB 12 •HR 2965 IH (l) AUTHORIZATION OF APPROPRIATIONS.—To carry 1 out this section, there is authorized to be appropriated 2 $10,000,000 for each of fiscal years 2024 through 2028. 3 Æ VerDate Sep 11 2014 01:17 May 06, 2023 Jkt 039200 PO 00000 Frm 00012 Fmt 6652 Sfmt 6301 E:\BILLS\H2965.IH H2965 pbinns on DSKJLVW7X2PROD with $$_JOB