Advancing FASD Research, Prevention, and Services Act

I 116TH CONGRESS 2D SESSION H. R. 5790 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 HOUSE OF REPRESENTATIVES FEBRUARY 6, 2020 Ms. MCCOLLUM (for herself, Mr. YOUNG, Mr. COLE, Mr. PHILLIPS, Ms. OMAR, Ms. CRAIG, and Ms. HAALAND) introduced the following bill; which was referred to the Committee on Energy and Commerce, and in addition to the Committee on Education and Labor, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee con- cerned 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, Prevention, and Services Act’’. 5 VerDate Sep 11 2014 21:21 Feb 12, 2020 Jkt 099200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\H5790.IH H5790 pamtmann on DSKBC07HB2PROD with BILLS 2 •HR 5790 IH SEC. 2. PROGRAMS FOR FETAL ALCOHOL SPECTRUM DIS- 1 ORDERS. 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 by striking section 399H and inserting the following: 5 ‘‘SEC. 399H. PROGRAMS FOR FETAL ALCOHOL SPECTRUM 6 DISORDERS. 7 ‘‘(a) DEFINITION.—In this part, the terms ‘fetal alco- 8 hol spectrum disorders’ and ‘FASD’ mean the range of 9 effects that can occur in an individual who is prenatally 10 exposed to alcohol. Such effects may include physical, 11 mental, behavioral, and learning disabilities, with possible 12 lifelong implications. 13 ‘‘(b) RESEARCH ON FETAL ALCOHOL SPECTRUM 14 DISORDERS AND RELATED CONDITIONS.— 15 ‘‘(1) IN GENERAL.—The Secretary, acting 16 through the Director of the National Institutes of 17 Health and in coordination with the Interagency Co- 18 ordinating Committee on Fetal Alcohol Spectrum 19 Disorders under section 399H–1, shall— 20 ‘‘(A) establish a research agenda for 21 FASD; and 22 ‘‘(B) award grants, contracts, or coopera- 23 tive agreements to public or private nonprofit 24 entities to pay all or part of carrying out re- 25 search under such agenda. 26 VerDate Sep 11 2014 21:21 Feb 12, 2020 Jkt 099200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H5790.IH H5790 pamtmann on DSKBC07HB2PROD with BILLS 3 •HR 5790 IH ‘‘(2) TYPES OF RESEARCH.—In carrying out 1 paragraph (1), the Secretary, acting through the Di- 2 rector of the National Institute of Alcohol Abuse and 3 Alcoholism (referred to in this part as the ‘Director 4 of the Institute’), shall continue to conduct and ex- 5 pand national and international research in coordi- 6 nation with other Federal agencies that includes— 7 ‘‘(A) the most promising avenues of re- 8 search in FASD diagnosis, intervention, and 9 prevention; 10 ‘‘(B) factors that may mitigate the effects 11 of fetal alcohol exposure; and 12 ‘‘(C) other research that the Director of 13 the Institute determines to be appropriate with 14 respect to conditions that develop as a result of 15 in-utero substance exposure. 16 ‘‘(c) SURVEILLANCE, PUBLIC HEALTH RESEARCH, 17 AND PREVENTION ACTIVITIES.— 18 ‘‘(1) IN GENERAL.—The Secretary, acting 19 through the Director of the National Center on 20 Birth Defects and Developmental Disabilities of the 21 Centers for Disease Control and Prevention, shall 22 facilitate surveillance, public health research, and 23 prevention of FASD in accordance with this sub- 24 section. 25 VerDate Sep 11 2014 21:21 Feb 12, 2020 Jkt 099200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H5790.IH H5790 pamtmann on DSKBC07HB2PROD with BILLS 4 •HR 5790 IH ‘‘(2) SURVEILLANCE, PUBLIC HEALTH RE- 1 SEARCH, AND PREVENTION.—In carrying out this 2 subsection, the Secretary shall— 3 ‘‘(A) integrate into clinical practice the evi- 4 dence-based standard case definition for diag- 5 nosis of fetal alcohol syndrome and, in collabo- 6 ration with the Director of the Institute, the 7 Director of the Centers for Disease Control and 8 Prevention, the Interagency Coordinating Com- 9 mittee on Fetal Alcohol Spectrum Disorders es- 10 tablished under section 399H–1, researchers, 11 and other experts in the field, develop standard, 12 evidence-based clinical diagnostic guidelines, 13 and criteria for all other fetal alcohol spectrum 14 disorders; 15 ‘‘(B) conduct applied public health preven- 16 tion research to identify evidence-based strate- 17 gies for reducing alcohol-exposed pregnancies in 18 women at high risk for alcohol-exposed preg- 19 nancies; 20 ‘‘(C) disseminate and provide the necessary 21 training and support to implement evidence- 22 based strategies developed under subparagraph 23 (B) to— 24 VerDate Sep 11 2014 21:21 Feb 12, 2020 Jkt 099200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H5790.IH H5790 pamtmann on DSKBC07HB2PROD with BILLS 5 •HR 5790 IH ‘‘(i) hospitals, Federally-qualified 1 health centers, residential and outpatient 2 substance use treatment programs, and 3 other appropriate health care providers; 4 ‘‘(ii) educational settings; 5 ‘‘(iii) social work and child welfare of- 6 fices; 7 ‘‘(iv) foster care providers and adop- 8 tion agencies; 9 ‘‘(v) State offices and other agencies 10 providing services to individuals with dis- 11 abilities; 12 ‘‘(vi) mental health treatment facili- 13 ties; and 14 ‘‘(vii) other entities that the Secretary 15 determines to be appropriate; 16 ‘‘(D) conduct activities related to risk fac- 17 tor surveillance, including the biannual moni- 18 toring and reporting of alcohol consumption 19 among pregnant women and women of child- 20 bearing age; 21 ‘‘(E) disseminate and evaluate brief behav- 22 ioral intervention strategies and referrals aimed 23 at preventing alcohol-exposed pregnancies 24 among women of childbearing age in special set- 25 VerDate Sep 11 2014 21:21 Feb 12, 2020 Jkt 099200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H5790.IH H5790 pamtmann on DSKBC07HB2PROD with BILLS 6 •HR 5790 IH tings, including clinical primary health centers, 1 outpatient clinics, child welfare agencies, and 2 correctional facilities and recovery campuses; 3 ‘‘(F) disseminate comprehensive alcohol 4 and pregnancy and FASD information, re- 5 sources, and services to families and caregivers, 6 professionals, and the public; and 7 ‘‘(G) coordinate with affiliated State and 8 local systems and organizations on activities 9 with respect to the prevention of FASD and re- 10 lated conditions for pregnant mothers. 11 ‘‘(d) BUILDING STATE FASD SYSTEMS.— 12 ‘‘(1) IN GENERAL.—The Secretary, acting 13 through the Administrator of the Health Resources 14 and Services Administration, shall award grants, 15 contracts, or cooperative agreements to States for 16 the purpose of developing and implementing a state- 17 wide FASD strategic plan, establishing or expanding 18 statewide programs of surveillance, screening and di- 19 agnosis, prevention, and clinical intervention and 20 support for individuals with FASD and their fami- 21 lies. 22 ‘‘(2) ELIGIBILITY.—To be eligible to receive a 23 grant, contract, or cooperative agreement under 24 paragraph (1), a State shall prepare and submit to 25 VerDate Sep 11 2014 21:21 Feb 12, 2020 Jkt 099200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\H5790.IH H5790 pamtmann on DSKBC07HB2PROD with BILLS 7 •HR 5790 IH the Secretary an application at such time, in such 1 manner, and containing such information as the Sec- 2 retary may require. The application shall include— 3 ‘‘(A) evidence of the establishment of a 4 State advisory group composed of State agen- 5 cies, local governmental entities, and Indian 6 Tribes and Tribal organizations; and 7 ‘‘(B) private sector stakeholders whose 8 purpose is to develop a statewide strategic plan 9 and make recommendations for the prevention 10 of FASD, screening and diagnosis, and clinical 11 intervention and support for individuals with 12 FASD and their families. 13 ‘‘(3) STRATEGIC PLAN.—The statewide stra- 14 tegic plan required under paragraph (1) shall in- 15 clude— 16 ‘‘(A) identification of existing State and 17 local programs and systems that could be used 18 to identify and assist individuals with FASD, 19 related conditions, and prevent alcohol con- 20 sumption during pregnancy; 21 ‘‘(B) identification of barriers to access to 22 FASD diagnostic services or to programs to as- 23 sist individuals with FASD or women at risk 24 VerDate Sep 11 2014 21:21 Feb 12, 2020 Jkt 099200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\H5790.IH H5790 pamtmann on DSKBC07HB2PROD with BILLS 8 •HR 5790 IH for substance abuse and alcohol-exposed preg- 1 nancies; and 2 ‘‘(C) proposals to eliminate barriers to pre- 3 vention and treatment programs. 4 ‘‘(4) RESTRICTIONS ON AND USE OF FUNDS.— 5 Amounts received under a grant, contract, or cooper- 6 ative agreement under paragraph (1) shall be used 7 for one or more of the following activities: 8 ‘‘(A) Providing educational and supportive 9 services to families of individuals and families 10 with FASD. 11 ‘‘(B) Establishing a statewide surveillance 12 system. 13 ‘‘(C) Including FASD education in State, 14 medical, and health care (including mental 15 health care) university programs. 16 ‘‘(D) Collecting, analyzing, and inter- 17 preting data. 18 ‘‘(E) Developing, implementing, and evalu- 19 ating population-based and targeted prevention 20 programs for FASD, including public awareness 21 campaigns. 22 ‘‘(F) Referring individuals with FASD to 23 appropriate support services. 24 VerDate Sep 11 2014 21:21 Feb 12, 2020 Jkt 099200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\H5790.IH H5790 pamtmann on DSKBC07HB2PROD with BILLS 9 •HR 5790 IH ‘‘(G) Implementing recommendations from 1 relevant agencies and organizations, including 2 the State advisory group, on the identification 3 and prevention of FASD, and intervention pro- 4 grams or services for individuals with FASD. 5 ‘‘(H) Providing training to health care (in- 6 cluding mental health care) providers on the 7 prevention, identification, and treatment of 8 FASD. 9 ‘‘(I) Disseminating information about 10 FASD and the availability of support services 11 to families and individuals with FASD. 12 ‘‘(J) Other activities, as the Secretary de- 13 termines appropriate. 14 ‘‘(5) OTHER CONTRACTS AND AGREEMENTS.— 15 A State may carry out activities under paragraph 16 (4) through contracts or cooperative agreements 17 with public and private nonprofit entities with a 18 demonstrated expertise in FASD prevention and 19 intervention services. 20 ‘‘(e) PROMOTING COMMUNITY PARTNERSHIPS.— 21 ‘‘(1) IN GENERAL.—The Secretary, acting 22 through the Administrator of Health and Resource 23 Services and Administration, shall award grants, 24 contracts, or cooperative agreements to eligible enti- 25 VerDate Sep 11 2014 21:21 Feb 12, 2020 Jkt 099200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\H5790.IH H5790 pamtmann on DSKBC07HB2PROD with BILLS 10 •HR 5790 IH ties to enable such entities to establish, enhance, or 1 improve community partnerships for the purpose of 2 collaborating on common objectives and integrating 3 the services available to individuals with FASD such 4 as surveillance, screening, prevention, treatment, 5 and support services. 6 ‘‘(2) ELIGIBLE ENTITIES.—To be eligible to re- 7 ceive a grant, contract, or cooperative agreement 8 under paragraph (1), a entity shall— 9 ‘‘(A) be a public or private nonprofit enti- 10 ty, which may be— 11 ‘‘(i) a health care provider or health 12 professional; 13 ‘‘(ii) a primary or secondary school; 14 ‘‘(iii) a social work or child welfare of- 15 fice; 16 ‘‘(iv) an incarceration, detainment fa- 17 cility, or judicial system for juveniles and 18 adults; 19 ‘‘(v) an FASD organization, parent- 20 led group, or other organization that sup- 21 ports and advocates for individuals with 22 FASD; 23 ‘‘(vi) an Indian Tribe or Tribal orga- 24 nization; 25 VerDate Sep 11 2014 21:21 Feb 12, 2020 Jkt 099200 PO 00000 Frm 00010 Fmt 6652 Sfmt 6201 E:\BILLS\H5790.IH H5790 pamtmann on DSKBC07HB2PROD with BILLS 11 •HR 5790 IH ‘‘(vii) an early childhood intervention 1 facility; 2 ‘‘(viii) any other entity the Secretary 3 determines to be appropriate; or 4 ‘‘(ix) a consortium of any of the enti- 5 ties described in clauses (i) through (viii); 6 and 7 ‘‘(B) prepare and submit to the Secretary 8 an application at such time, in such manner, 9 and containing such information as the Sec- 10 retary may require, including assurances that 11 the entity submitting the application does, at 12 the time of application, or will, within a reason- 13 able amount of time from the date of applica- 14 tion, include substantive participation of a 15 broad range of entities that work with or pro- 16 vide services for individuals with FASD. 17 ‘‘(3) ACTIVITIES.—An eligible entity shall use 18 amounts received under a grant, contract, or cooper- 19 ative agreement under this subsection to carry out 20 one or more of the following activities: 21 ‘‘(A) Integrating FASD services into exist- 22 ing programs and services available in the com- 23 munity. 24 VerDate Sep 11 2014 21:21 Feb 12, 2020 Jkt 099200 PO 00000 Frm 00011 Fmt 6652 Sfmt 6201 E:\BILLS\H5790.IH H5790 pamtmann on DSKBC07HB2PROD with BILLS 12 •HR 5790 IH ‘‘(B) Conducting a needs assessment to 1 identify services that are not available in a com- 2 munity. 3 ‘‘(C) Developing and implementing com- 4 munity-based initiatives to prevent, screen, di- 5 agnose, treat, and provide support services to 6 individuals with FASD and their families. 7 ‘‘(D) Disseminating information about 8 FASD and the availability of support services. 9 ‘‘(E) Developing and implementing a com- 10 munity-wide public awareness and outreach 11 campaign focusing on the dangers of drinking 12 alcohol while pregnant. 13 ‘‘(F) Providing mentoring or other support 14 to families of individuals with FASD. 15 ‘‘(G) Other activities, as the Secretary de- 16 termines appropriate. 17 ‘‘(f) DEVELOPMENT OF BEST PRACTICES AND MOD- 18 ELS OF CARE.— 19 ‘‘(1) IN GENERAL.—The Secretary, in coordina- 20 tion with the Administrator of Health Resources 21 Services Administration, shall award grants to 22 States, Indian Tribes and Tribal organizations, non- 23 governmental organizations, and institutions of high- 24 VerDate Sep 11 2014 21:21 Feb 12, 2020 Jkt 099200 PO 00000 Frm 00012 Fmt 6652 Sfmt 6201 E:\BILLS\H5790.IH H5790 pamtmann on DSKBC07HB2PROD with BILLS 13 •HR 5790 IH er education for the establishment of pilot projects 1 to identify and implement be [Text truncated for display. 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