FASD Respect Act

II 118TH CONGRESS 1ST SESSION S. 1800 To amend the Public Health Service Act to reauthorize and extend the Fetal Alcohol Spectrum Disorders Prevention and Services program, and for other purposes. IN THE SENATE OF THE UNITED STATES JUNE 1, 2023 Ms. MURKOWSKI (for herself, Ms. KLOBUCHAR, Mr. MORAN, and Mr. KING) introduced the following bill; which was read twice and referred to the Committee on Health, Education, Labor, and Pensions A BILL To amend the Public Health Service Act to reauthorize and extend the Fetal Alcohol Spectrum Disorders Prevention and Services program, 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 SECTION 1. SHORT TITLE. 3 This Act may be cited as the ‘‘Advancing FASD Re- 4 search, Services and Prevention Act’’ or the ‘‘FASD Re- 5 spect Act’’. 6 VerDate Sep 11 2014 04:15 Jun 27, 2023 Jkt 039200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\S1800.IS S1800 kjohnson on DSK79L0C42PROD with BILLS 2 •S 1800 IS SEC. 2. HHS PROGRAM ON FETAL ALCOHOL SPECTRUM 1 DISORDERS. 2 (a) IN GENERAL.—Part O of title III of the Public 3 Health Service Act (42 U.S.C. 280f et seq.) is amended— 4 (1) by amending the part heading to read as 5 follows: ‘‘FETAL ALCOHOL SPECTRUM DIS- 6 ORDERS PREVENTION AND SERVICES PRO- 7 GRAM’’; 8 (2) in section 399H (42 U.S.C. 280f)— 9 (A) in the section heading, by striking 10 ‘‘ESTABLISHMENT OF FETAL ALCOHOL 11 SYNDROME PREVENTION’’ and inserting 12 ‘‘FETAL ALCOHOL SPECTRUM DISORDERS 13 PREVENTION, INTERVENTION,’’; 14 (B) by striking ‘‘Fetal Alcohol Syndrome 15 and Fetal Alcohol Effect’’ each place it appears 16 and inserting ‘‘FASD’’; 17 (C) in subsection (a)— 18 (i) by amending the heading to read 19 as follows: ‘‘IN GENERAL’’; 20 (ii) in the matter preceding paragraph 21 (1)— 22 (I) by inserting ‘‘or continue ac- 23 tivities to support’’ after ‘‘shall estab- 24 lish’’; 25 VerDate Sep 11 2014 04:15 Jun 27, 2023 Jkt 039200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\S1800.IS S1800 kjohnson on DSK79L0C42PROD with BILLS 3 •S 1800 IS (II) by striking ‘‘FASD’’ (as 1 amended by subparagraph (B)) and 2 inserting ‘‘fetal alcohol spectrum dis- 3 orders (referred to in this section as 4 ‘FASD’)’’; 5 (III) by striking ‘‘prevention, 6 intervention’’ and inserting ‘‘aware- 7 ness, prevention, identification, inter- 8 vention,’’; and 9 (IV) by striking ‘‘that shall’’ and 10 inserting ‘‘, which may’’; 11 (iii) in paragraph (1)— 12 (I) in subparagraph (A)— 13 (aa) by striking ‘‘medical 14 schools’’ and inserting ‘‘health 15 professions schools’’; and 16 (bb) by inserting ‘‘infants,’’ 17 after ‘‘provision of services for’’; 18 and 19 (II) in subparagraph (D), by 20 striking ‘‘medical and mental’’ and in- 21 serting ‘‘agencies providing’’; 22 (iv) in paragraph (2)— 23 (I) in the matter preceding sub- 24 paragraph (A), by striking ‘‘a preven- 25 VerDate Sep 11 2014 04:15 Jun 27, 2023 Jkt 039200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\S1800.IS S1800 kjohnson on DSK79L0C42PROD with BILLS 4 •S 1800 IS tion and diagnosis program to support 1 clinical studies, demonstrations and 2 other research as appropriate’’ and in- 3 serting ‘‘supporting and conducting 4 research on FASD, as appropriate, in- 5 cluding’’; 6 (II) in subparagraph (B)— 7 (aa) by striking ‘‘prevention 8 services and interventions for 9 pregnant, alcohol-dependent 10 women’’ and inserting ‘‘culturally 11 and linguistically informed evi- 12 dence-based or practice-based 13 interventions and appropriate so- 14 cietal supports for preventing 15 prenatal alcohol exposure, which 16 may co-occur with exposure to 17 other substances’’; and 18 (bb) by striking ‘‘; and’’ and 19 inserting a semicolon; 20 (v) by striking paragraph (3) and in- 21 serting the following: 22 ‘‘(3) integrating into surveillance practice an 23 evidence-based standard case definition for fetal al- 24 cohol syndrome and, in collaboration with other Fed- 25 VerDate Sep 11 2014 04:15 Jun 27, 2023 Jkt 039200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\S1800.IS S1800 kjohnson on DSK79L0C42PROD with BILLS 5 •S 1800 IS eral and outside partners, support organizations of 1 appropriate medical and mental health professionals 2 in their development and refinement of evidence- 3 based clinical diagnostic guidelines and criteria for 4 all fetal alcohol spectrum disorders; and 5 ‘‘(4) building State and Tribal capacity for the 6 identification, treatment, and support of individuals 7 with FASD and their families, which may include— 8 ‘‘(A) utilizing and adapting existing Fed- 9 eral, State, or Tribal programs to include 10 FASD identification and FASD-informed sup- 11 port; 12 ‘‘(B) developing and expanding screening 13 and diagnostic capacity for FASD; 14 ‘‘(C) developing, implementing, and evalu- 15 ating targeted FASD-informed intervention 16 programs for FASD; 17 ‘‘(D) increasing awareness of FASD; 18 ‘‘(E) providing training with respect to 19 FASD for professionals across relevant sectors; 20 and 21 ‘‘(F) disseminating information about 22 FASD and support services to affected individ- 23 uals and their families.’’; 24 (D) in subsection (b)— 25 VerDate Sep 11 2014 04:15 Jun 27, 2023 Jkt 039200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\S1800.IS S1800 kjohnson on DSK79L0C42PROD with BILLS 6 •S 1800 IS (i) by striking ‘‘described in section 1 399I’’; 2 (ii) by striking ‘‘The Secretary’’ and 3 inserting the following: 4 ‘‘(1) IN GENERAL.—The Secretary’’; and 5 (iii) by adding at the end the fol- 6 lowing: 7 ‘‘(2) ELIGIBLE ENTITIES.—To be eligible to re- 8 ceive a grant, or enter into a cooperative agreement 9 or contract, under this section, an entity shall— 10 ‘‘(A) be a State, Indian Tribe or Tribal or- 11 ganization, local government, scientific or aca- 12 demic institution, or nonprofit organization; 13 and 14 ‘‘(B) prepare and submit to the Secretary 15 an application at such time, in such manner, 16 and containing such information as the Sec- 17 retary may require, including a description of 18 the activities that the entity intends to carry 19 out using amounts received under this sec- 20 tion.’’; and 21 (E) by striking subsections (c) and (d); 22 and 23 (F) by adding at the end the following: 24 VerDate Sep 11 2014 04:15 Jun 27, 2023 Jkt 039200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\S1800.IS S1800 kjohnson on DSK79L0C42PROD with BILLS 7 •S 1800 IS ‘‘(c) DEFINITION OF FASD-INFORMED.—For pur- 1 poses of this section, the term ‘FASD-informed’, with re- 2 spect to support or an intervention program, means that 3 such support or intervention program uses culturally and 4 linguistically informed evidence-based or practice-based 5 interventions and appropriate societal supports to support 6 an improved quality of life for an individual with FASD 7 and the family of such individual.’’; 8 (3) by striking sections 399I, 399J, and 399K 9 (42 U.S.C. 280f–1, 280f–2, 280f–3) and inserting 10 the following: 11 ‘‘SEC. 399I. FETAL ALCOHOL SPECTRUM DISORDERS CEN- 12 TERS FOR EXCELLENCE. 13 ‘‘(a) IN GENERAL.—The Secretary shall, as appro- 14 priate, award grants, cooperative agreements, or contracts 15 to public or nonprofit entities with demonstrated expertise 16 in the prevention of, identification of, and intervention 17 services with respect to, fetal alcohol spectrum disorders 18 (referred to in this section as ‘FASD’) and other related 19 adverse conditions. Such awards shall be for the purposes 20 of establishing Fetal Alcohol Spectrum Disorders Centers 21 for Excellence to build local, Tribal, State, and national 22 capacities to prevent the occurrence of FASD and other 23 related adverse conditions, and to respond to the needs 24 VerDate Sep 11 2014 20:24 Jun 27, 2023 Jkt 039200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\S1800.IS S1800 kjohnson on DSK79L0C42PROD with BILLS 8 •S 1800 IS of individuals with FASD and their families by carrying 1 out the programs described in subsection (b). 2 ‘‘(b) PROGRAMS.—An entity receiving an award 3 under subsection (a) may use such award for the following 4 purposes: 5 ‘‘(1) Initiating or expanding diagnostic capacity 6 for FASD by increasing screening, assessment, iden- 7 tification, and diagnosis. 8 ‘‘(2) Developing and supporting public aware- 9 ness and outreach activities, including the use of a 10 range of media and public outreach, to raise public 11 awareness of the risks associated with alcohol con- 12 sumption during pregnancy, with the goals of reduc- 13 ing the prevalence of FASD and improving the de- 14 velopmental, health (including mental health), and 15 educational outcomes of individuals with FASD and 16 supporting families caring for individuals with 17 FASD. 18 ‘‘(3) Acting as a clearinghouse for evidence- 19 based resources on FASD prevention, identification, 20 and culturally and linguistically informed best prac- 21 tices, including the maintenance of a national data- 22 based directory on FASD-specific services in States, 23 Indian Tribes, and local communities, and dissemi- 24 nating ongoing research and developing resources on 25 VerDate Sep 11 2014 04:15 Jun 27, 2023 Jkt 039200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\S1800.IS S1800 kjohnson on DSK79L0C42PROD with BILLS 9 •S 1800 IS FASD to help inform systems of care for individuals 1 with FASD across their lifespan. 2 ‘‘(4) Increasing awareness and understanding 3 of efficacious, evidence-based FASD screening tools 4 and culturally- and linguistically-appropriate evi- 5 dence-based intervention services and best practices, 6 which may include by conducting national, regional, 7 State, Tribal, or peer cross-State webinars, work- 8 shops, or conferences for training community lead- 9 ers, medical and mental health and substance use 10 disorder professionals, education and disability pro- 11 fessionals, families, law enforcement personnel, 12 judges, individuals working in financial assistance 13 programs, social service personnel, child welfare pro- 14 fessionals, and other service providers. 15 ‘‘(5) Improving capacity for State, Tribal, and 16 local affiliates dedicated to FASD awareness, pre- 17 vention, and identification and family and individual 18 support programs and services. 19 ‘‘(6) Providing technical assistance to grantees 20 under section 399H, as appropriate. 21 ‘‘(7) Carrying out other functions, as appro- 22 priate. 23 ‘‘(c) APPLICATION.—To be eligible for a grant, con- 24 tract, or cooperative agreement under this section, an enti- 25 VerDate Sep 11 2014 04:15 Jun 27, 2023 Jkt 039200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\S1800.IS S1800 kjohnson on DSK79L0C42PROD with BILLS 10 •S 1800 IS ty shall submit to the Secretary an application at such 1 time, in such manner, and containing such information as 2 the Secretary may require. 3 ‘‘(d) SUBCONTRACTING.—A public or private non- 4 profit entity may carry out the following activities required 5 under this section through contracts or cooperative agree- 6 ments with other public and private nonprofit entities with 7 demonstrated expertise in FASD: 8 ‘‘(1) Prevention activities. 9 ‘‘(2) Screening and identification. 10 ‘‘(3) Resource development and dissemination, 11 training and technical assistance, administration, 12 and support of FASD partner networks. 13 ‘‘(4) Intervention services. 14 ‘‘SEC. 399J. AUTHORIZATION OF APPROPRIATIONS. 15 ‘‘There are authorized to be appropriated to carry out 16 this part such sums as may be necessary for each of fiscal 17 years 2024 through 2028.’’. 18 (b) REPORT.—Not later than 4 years after the date 19 of enactment of this Act, the Secretary of Health and 20 Human Services shall submit to the Committee on Health, 21 Education, Labor, and Pensions of the Senate and the 22 Committee on Energy and Commerce of the House of 23 Representatives a report on the efforts of the Department 24 of Health and Human Services to advance public aware- 25 VerDate Sep 11 2014 04:15 Jun 27, 2023 Jkt 039200 PO 00000 Frm 00010 Fmt 6652 Sfmt 6201 E:\BILLS\S1800.IS S1800 kjohnson on DSK79L0C42PROD with BILLS 11 •S 1800 IS ness on, and facilitate the identification of best practices 1 related to, fetal alcohol spectrum disorders identification, 2 prevention, treatment, and support. 3 Æ VerDate Sep 11 2014 04:15 Jun 27, 2023 Jkt 039200 PO 00000 Frm 00011 Fmt 6652 Sfmt 6301 E:\BILLS\S1800.IS S1800 kjohnson on DSK79L0C42PROD with BILLS