Sec. 3. Programs for fetal alcohol spectrum disorders
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Part O of title III of the Public Health Service Act ( 42 U.S.C. 280f et seq. ) is amended by striking section 399H and inserting the following: In this part— the term fetal alcohol spectrum disorders or FASD means diagnosable developmental disabilities of a broad range of neurodevelopmental and physical effects that result from prenatal exposure to alcohol. The effects may include lifelong physical, mental, behavioral, social and learning disabilities, and other problems that impact daily functioning (such as living independently or holding a job), as well as overall health and well-being; and the terms Indian Tribe and Tribal organization have the meanings given the terms Indian tribe and tribal organization in section 4 of the Indian Self-Determination and Education Assistance Act.
The Secretary, acting through the Director of the National Institutes of Health, shall— establish a research program for FASD; and award grants, contracts, or cooperative agreements to public or private nonprofit entities to pay all or part of carrying out research under such research program. In carrying out paragraph (1), the Secretary, acting through the Director of the National Institute on Alcohol Abuse and Alcoholism (referred to in this section as the Director of the Institute ), shall continue to conduct and expand national and international research in consultation with other Federal agencies and outside partners that includes— the most promising avenues of research in FASD diagnosis, intervention, and prevention; factors that may mitigate the effects of prenatal alcohol and other substance exposure including culturally relevant factors and social determinants of health; and other research that the Director of the Institute determines to be appropriate with respect to conditions that develop as a result of prenatal alcohol and other substance exposure.
To carry out this subsection, there is authorized to be appropriated $30,000,000 for each of fiscal years 2022 through 2027. The Secretary, acting through the Director of the National Center on Birth Defects and Developmental Disabilities of the Centers for Disease Control and Prevention, shall facilitate surveillance, public health research, and prevention of FASD in accordance with this subsection. In carrying out this subsection, the Secretary shall— integrate into surveillance practice an evidence-based standard case definition for fetal alcohol syndrome and, in collaboration with other Federal and outside partners, support organizations of appropriate medical and mental health professionals in their development and refinement of evidence-based clinical diagnostic guidelines and criteria for all fetal alcohol spectrum disorders; disseminate and provide the necessary training and support to appropriate medical and mental health professionals on the early identification of children with prenatal alcohol or other substance exposure as such children may require ongoing developmental and behavioral surveillance by their primary health care clinician which continues throughout their lifetime to access ongoing treatment and referral problems; support applied public health prevention research to identify culturally appropriate or evidence-based strategies for reducing alcohol and other substance exposed pregnancies in women at high risk of such pregnancies; disseminate and provide the necessary training and support to implement culturally appropriate or evidence-based strategies developed under subparagraph
(C)to— hospitals, federally qualified health centers, residential and outpatient substance disorder treatment programs, and other appropriate health care providers; educational settings; social work and child protection service providers; foster care providers and adoption agencies; State or Tribal offices and other agencies providing services to individuals with disabilities; mental health treatment facilities; Indian Tribes and Tribal organizations; military medical treatment facility described in section 1073d(c) of title 10, United States Code, and medical centers of the Department of Veterans Affairs; and other entities that the Secretary determines to be appropriate; conduct activities related to risk factor surveillance; disseminate and evaluate brief behavioral intervention strategies and referrals aimed at preventing alcohol and substance-exposed pregnancies among women of childbearing age in special settings, including clinical primary health centers, outpatient clinics, child welfare agencies, and correctional facilities and recovery campuses; document the FASD lived experience and incorporate the perspectives of individuals and their family members affected by FASD and birth mothers of individuals with FASD in the dissemination of information and resources; disseminate comprehensive alcohol and pregnancy and FASD information, resources, and services to families and caregivers, professionals, and the public through an established national network of affiliated FASD organizations and through organizations serving medical, behavioral health, addiction, disability, education, legal and other professionals; and coordinate FASD activities with affiliated State, Tribal and local systems and organizations with respect to the prevention of alcohol and other substance-exposed pregnancies. To carry out this subsection, there is authorized to be appropriated $13,000,000 for each of fiscal years 2022 through 2027. The Secretary, acting through the Administrator of the Health Resources and Services Administration, shall award grants, contracts, or cooperative agreements to States and Indian Tribes for the purpose of establishing ongoing comprehensive and coordinated State and Tribal FASD multidisciplinary, diverse coalitions to— develop systems of care for— the prevention of FASD and other adverse conditions as a result of prenatal substance exposure; and the identification, treatment and support of individuals with FASD or other adverse conditions from prenatal substance exposure and support for their families; provide leadership and support in establishing, expanding or increasing State and Tribal systems capacity in addressing FASD and other adverse conditions as a result of prenatal substance exposure; and update or develop implementing and evaluating State and Tribal FASD strategic plans to— establish or expand State and Tribal programs of surveillance, screening, assessment, diagnosis, prevention of FASD and other physical or neurodevelopmental disabilities from prenatal substance exposure; integrate programs related to prevention of FASD and interventions addressing the adverse effects of prenatal alcohol and other substance exposure into existing State and Tribal coordinated systems of care which focus on the social determinants of health, including systemic racism, access to the Medicare program under title XVIII of the Social Security Act or to the Medicaid program under title XIX of such Act, maternal and early childhood health, economic security, food and housing, education, justice and corrections, mental health, substance use disorder, child welfare, developmental disabilities, and health care; identify across-the-lifetime issues for individuals and families related to FASD and other adverse conditions related to prenatal substance exposure, including historical and cultural trauma, child abuse and neglect, mental health and substance use disorder; and identify systemic and other barriers to the integration of prenatal alcohol and substance exposure screening, assessment and identification of FASD into existing systems of care for individuals and families. To be eligible to receive a grant, contract, or cooperative agreement under paragraph (1), a State, an Indian Tribe, a Tribal organization, or a State-Tribal collaborative (referred to in this paragraph as an eligible entity ) shall prepare and submit to the Secretary an application at such time, in such manner, and containing such information as the Secretary may require, including— evidence that the eligible entity designated in the application have or will have authority to implement programs described in this subsection; evidence of the establishment of a State or Tribal FASD Advisory Group of State agencies or Tribal entities and, if available, a State affiliate of the National Organization on Fetal Alcohol Syndrome or similar Tribal or statewide FASD advocacy organization, to provide the leadership in building State or Tribal capacity in addressing prenatal alcohol and other substance exposure, including FASD prevention, identification, and intervention activities and programming, including— the formation of a FASD advisory coalition of diverse, public and private representatives from multiple disciplines that may include— State agencies or Tribal entities that are responsible for health, human services, corrections, education, housing, developmental disabilities, substance use disorder, child welfare, juvenile and adult justice systems, mental health and any other agency related to the adverse social impact of prenatal alcohol and other substance exposures; public and private sector stakeholders, including individuals with FASD and their caretakers and entities that work with or provide services or support for individuals with FASD and their families, such as community-based agencies, law enforcement, the judiciary, probation officers, medical and mental health providers, substance use disorder counselors, educators, child welfare professionals, and other entities that address individual, family, community and society issues related to prenatal alcohol and other substance exposure throughout an individual’s lifespan; and the development of a State or Tribal strategic plan that— contains recommendations, action steps, and deliverables for improving social determinants of health; recommends actions for prevention of FASD and other conditions related to prenatal substance exposure; integrates culturally appropriate best practices or evidence-based practices on screening, identification and treatment into existing systems of care; provides for FASD-informed clinical and therapeutic interventions; provides for FASD-informed supports and services for families and individuals with FASD and other conditions from prenatal substance exposure across their lifetimes; identifies— existing FASD or other programs related to prenatal substance exposures in the State or Indian Tribe, including— FASD primary, secondary and tertiary prevention programs; prenatal screening, assessment or diagnostic services; and support and service programs for individuals with FASD and their families; and existing State, local, and Tribal programs, systems, and funding streams that could be used to identify and assist individuals with FASD and other conditions related to substance exposed pregnancies, and prevent prenatal exposure to alcohol and other harmful substances; barriers to providing FASD diagnostic services or programs to assist individuals with FASD or reducing alcohol and substance exposed pregnancies for women at risk for alcohol or other substance exposed pregnancies, and recommendations to reduce or eliminate such barriers; barriers to FASD prevention, screening, assessment, identification, and treatment programs and to the provision of FASD-informed support services and accommodations across the lifespan, and recommendations to reduce or eliminate such barriers; integrates a public-private partnership of State, Tribal, and local communities to develop a comprehensive FASD-informed and engaged systems of care approach that addresses social determinants of health, including systemic racism on health outcomes, economic security, food and housing; education, justice, and health care challenges experienced by individuals who have been diagnosed with FASD or other conditions as result of prenatal substance exposure; describes programs of surveillance, screening, assessment and diagnosis, prevention, clinical intervention and therapeutic and other supports and services for individuals with FASD and their families; recognizes the impact of historical, cultural, and other trauma of individuals in the design and application of all programming; and recognizes the lived experiences of birth mothers and those with FASD and their families in the design and application of all programming. Amounts received under a grant, contract, or cooperative agreement under this subsection shall be used for one or more of the following activities: Establishing or increasing diagnostic capacity in the State or Indian Tribe to meet the estimated prevalence needs of the State or Indian Tribe’s FASD population. Providing educational and supportive services to individuals with FASD and other conditions related to prenatal substance exposure and their families. Establishing a FASD statewide surveillance system. Including FASD information in State medical and mental health care and education programs at schools of higher education. Collecting, analyzing, and interpreting data. Replicating culturally aware or best practice FASD prevention programs, including case-management models for pregnant or parenting women with alcohol and other substance use disorders. Training of primary care and other providers in screening for prenatal alcohol and other substance exposure in prenatal, pediatric, early childhood or other child or teenage checkup settings. Developing, implementing, and evaluating population-based and targeted prevention programs for FASD, including public awareness campaigns. Increasing capacity of the State or Indian Tribe to deliver housing, economic and food security services to adults impacted by FASD or other conditions related to prenatal substance exposure. Referring individuals with FASD and other conditions related to prenatal substance exposure to appropriate FASD-informed support services. Providing for State and Tribal FASD coordinators. Providing training to health care (including mental health care) providers on the prevention, identification and treatment of FASD and other conditions related to prenatal substance exposure across the lifespan. Providing training to education, justice, and social service system professionals to become FASD-informed and FASD-engaged in their practices. Including FASD in training for workforce development and disability accessibility. Supporting peer-to-peer certification programs for individuals with FASD. Developing FASD-informed certification programs. Disseminating information about FASD and other conditions related to prenatal substance exposure and the availability of support services to families and individuals with FASD and other adverse conditions related to prenatal substance exposure. Implementing recommendations from relevant agencies and organizations, including the State or Tribal FASD advisory group, on the identification and prevention of FASD, intervention programs or services for individuals with FASD and their families. Other activities, as the Secretary determines appropriate or as recommended by the National Advisory Council on FASD under section 399H–1. A State may carry out activities under paragraph
(3)through contracts or cooperative agreements with another State or an Indian Tribe, and with public, private for-profit or nonprofit entities with a demonstrated expertise in FASD and other conditions related to prenatal substance exposure prevention, screening and diagnosis, or intervention services. Not later than 2 years after the date on which amounts are first appropriated under paragraph (6), the Secretary shall prepare and submit to the Committee on Health, Education, Labor, and Pensions of the Senate and the Committee on Energy and Commerce of the House of Representatives a report that contains a description of programs carried out under this section. At a minimum, the report shall contain— information concerning the number of States receiving grants; State and Tribal FASD diagnostic capacity and barriers to achieving diagnostic capacity based on State FASD surveillance data or the most recent estimated prevalence of FASD in the United States; information concerning systemic or other barriers to screening for prenatal alcohol and other substance exposure in existing systems of care, including— the child welfare system; maternal and early child health care and alcohol and other substance use disorder treatment programs; primary or secondary education systems; and juvenile and adult systems of justice; information concerning existing State, Tribal, local government or community programs and systems of care and funding streams that could be used to identify and assist individuals with FASD and other conditions related to substance exposed pregnancies and the degree to which such programs are FASD-informed or to which there are systemic or other barriers preventing their use; and information concerning existing State, Tribal, local government or community primary, tertiary, or secondary prevention programs on prenatal exposure to alcohol and other harmful prenatal substances. To carry out this subsection, there is authorized to be appropriated $32,000,000 for each of fiscal years 2022 through 2027. Of the amount appropriated for a fiscal year under subparagraph (A), $12,000,000 shall be allocated to States and Indian Tribes for purposes of covering administrative costs and supporting the employment of FASD State and Tribal coordinators. Up to 20 percent of the grants, contracts, or cooperative agreements awarded under this subsection shall be reserved for Indian Tribes and Tribal organizations. The Secretary, acting through the Administrator of Health Resources and Services Administration, shall award grants, contracts, or cooperative agreements to eligible entities to enable such entities to establish, enhance, or improve community partnerships for the purpose of collaborating on common objectives and integrating culturally appropriate best practice services available to individuals with FASD and other conditions related to prenatal substance exposure such as surveillance, screening, assessment, diagnosis, prevention, treatment, and support services. To be eligible to receive a grant, contract, or cooperative agreement under paragraph (1), an entity shall— be a public or private nonprofit entity that is— a health care provider or health professional; a primary or secondary school; a social work or child protection service provider; an incarceration facility, or State or local judicial system for juveniles and adults; an FASD organization, parent-led group, or other organization that supports and advocates for individuals with FASD and their families; an Indian Tribe or Tribal organization; an early childhood intervention facility; any other entity the Secretary determines to be appropriate; or a consortium of any of the entities described in clauses
(i)through (viii); and prepare and submit to the Secretary an application at such time, in such manner, and containing such information as the Secretary may require, including assurances that the entity submitting the application does, at the time of application, or will, within a reasonable amount of time from the date of application, provide evidence of substantive participation with a broad range of entities that work with or provide services for individuals with FASD. An eligible entity shall use amounts received under a grant, contract, or cooperative agreement under this subsection to carry out one or more of the following activities relating to FASD and other conditions related to prenatal substance exposure: Integrating FASD-informed and culturally appropriate practices into existing programs and services available in the community. Conducting a needs assessment to identify services that are not available in a community. Developing and implementing culturally appropriate, community-based initiatives to prevent FASD, and to screen, assess, diagnose, treat, and provide FASD-informed support services to individuals with FASD and their families. Disseminating information about FASD and the availability of support services. Developing and implementing a community-wide public awareness and outreach campaign focusing on the dangers of drinking alcohol while pregnant. Providing mentoring or other support to individuals with FASD and their families. Other activities, as the Secretary determines appropriate, or in consideration of recommendations from the National Advisory Council on FASD established under section 399H–1. To carry out this subsection, there is authorized to be appropriated $5,000,000 for each of fiscal years 2022 through 2027. The Secretary, in coordination with the Administrator of Health Resources and Services Administration, shall award grants to States, Indian Tribes and Tribal organizations, nongovernmental organizations, and institutions of higher education for the establishment of pilot projects to identify and implement culturally appropriate best practices for— providing intervention and education of children with FASD, including— activities and programs designed specifically for the identification, treatment, and education of such children; and curricula development and credentialing of teachers, administrators, and social workers who implement such programs and provide childhood interventions; educating professionals within the child welfare, juvenile and adult criminal justice systems, including judges, attorneys, probation officers, social workers, child advocates, medical and mental health professionals, substance abuse professionals, law enforcement officers, prison wardens or other incarceration administrators, and administrators of developmental disability, mental health and alternative incarceration facilities on how to screen, assess, identify, treat and support individuals with FASD or similar conditions related to prenatal substance exposure within these systems, including— programs designed specifically for the identification, assessment, treatment, and education of individuals with FASD; and curricula development and credentialing within the adult and juvenile justice and child welfare systems for individuals who implement such programs; educating adoption or foster care agency officials about available and necessary services for children with FASD, including— programs designed specifically for screening, assessment and identification, treatment, and education of individuals with FASD; and on-going and consistent education and training for potential adoptive or foster parents of a child with FASD; educating health and mental health and substance use providers about available and necessary services for children with FASD, including— programs designed specifically for screening and identification, and both health and mental health treatment, of individuals with FASD; and curricula development and credentialing within the health and mental health and substance abuse systems for individuals who implement such programs; and identifying and implementing culturally appropriate best practice models for reducing alcohol and other substance exposed pregnancies in women at high risk of such pregnancies. To be eligible for a grant under paragraph (1), an entity shall prepare and submit to the Secretary an application at such time, in such manner, and containing such information as the Secretary may require. To carry out this subsection, there is authorized to be appropriated $5,000,000 for each of fiscal years 2022 through 2027. The Secretary, in coordination with the Administrator of the Health Resources and Services Administration and the Administrator of the Administration for Community Living, shall award demonstration grants, contracts, and cooperative agreements to States and local units of government, Indian Tribes and Tribal organizations, and nongovernmental organizations for the purpose of establishing integrated systems for providing culturally appropriate best practice transitional services for adults affected by prenatal alcohol or substance exposure and evaluating the effectiveness of such services. To be eligible for a grant, contract, or cooperative agreement under paragraph (1), an entity shall prepare and submit to the Secretary an application at such time, in such manner, and containing such information as the Secretary may reasonably require, including specific credentials relating to education, skills, training, and continuing educational requirements relating to FASD. An entity shall use amounts received under a grant, contract, or cooperative agreement under paragraph
(1)to carry out one or more of the following activities: Provide housing assistance to, or specialized housing for, adults with FASD. Provide FASD-informed vocational training and placement services for adults with FASD. Provide medication monitoring services for adults with FASD. Provide FASD-informed training and support to organizations providing family services or mental health programs and other organizations that work with adults with FASD. Establish and evaluate housing models specially designed for adults with FASD. Recruit, train and provide mentors for individuals with FASD. Other services or programs, as the Secretary determines appropriate. To carry out this subsection, there is authorized to be appropriated $5,000,000 for each of fiscal years 2022 through 2027. The Secretary, in coordination the Assistant Secretary for Mental Health and Substance Use, shall make awards of grants, cooperative agreements, or contracts to public and nonprofit private entities, including Indian tribes and tribal organizations, to provide FASD-informed culturally appropriate services to individuals with FASD. An award under paragraph
(1)may, subject to paragraph (4), be used to— screen and test individuals to determine the type and level of services needed; develop a FASD-informed comprehensive plan for providing services to the individuals; provide FASD-informed mental health counseling; provide FASD-informed substance abuse prevention services and treatment, if needed; coordinate services with other social programs including social services, justice system, educational services, health services, mental health and substance abuse services, financial assistance programs, vocational services and housing assistance programs; provide FASD-informed vocational services; provide FASD-informed health counseling; provide FASD-informed housing assistance; conduct FASD-informed parenting skills training; develop and implement overall FASD-informed case management; provide supportive services for families of individuals with FASD; provide respite care for caretakers of individuals with FASD; recruit, train and provide mentors for individuals with FASD; provide FASD-informed educational and supportive services to families of individuals with FASD; and provide other services and programs, to the extent authorized by the Secretary after consideration of recommendations made by the National Advisory Council on FASD. To be eligible to receive an award under paragraph (1), an applicant shall— demonstrate that the program will be part of a coordinated, comprehensive system of care for such individuals; demonstrate an established communication with other social programs in the community including social services, justice system, financial assistance programs, health services, educational services, mental health and substance abuse services, vocational services and housing assistance services; have a qualified staff of medical, mental health or other professionals with a history of working with individuals with FASD; provide assurance that the services will be provided in a culturally and linguistically appropriate manner; and provide assurance that at the end of the 5-year award period, other mechanisms will be identified to meet the needs of the individuals and families served under such award. An award may be made under paragraph
(1)only if the applicant involved agrees that the award will not be expended to pay the expenses of providing any service under this section to an individual to the extent that payment has been made, or can reasonably be expected to be made, with respect to such expenses— under any State compensation program, under an insurance policy, or under any Federal or State or Tribal health benefits programs; or by an entity that provides health services on a prepaid basis. With respect to any award under paragraph (1), the period during which payments under such award are made to the recipient may not exceed 5 years. The Secretary shall evaluate each project carried out under paragraph
(1)and shall disseminate the findings with respect to each such evaluation to appropriate public and private entities, including the National Advisory Council on FASD. For the purpose of carrying out this subsection, there is authorized to be appropriated $10,000,000 for each fiscal years 2022 through 2027. Of the amounts appropriated under subparagraph
(A)for a fiscal year, not more than $300,000 shall, for the purposes relating to FASD, be made available for collaborative, coordinated interagency efforts with the National Institute on Alcohol Abuse and Alcoholism, National Institute on Mental Health, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the Health Resources and Services Administration, the Agency for Healthcare Research and Quality, the Administration for Community Living, the Centers for Disease Control and Prevention, the Department of Education, the Department of Justice, and other agencies, as determined by the Secretary. Interagency collaborative efforts may include— the evaluation of existing programs for efficacy; the development of new evidence-based or best practice programs for prevention of prenatal alcohol and other substance exposure, and interventions for individuals with FASD and their families; the facilitation of translation and transition of existing evidence-based, best practices or culturally appropriate prevention and intervention programs into general and community practice; and engaging in Tribal consultation to ensure that Indian Tribes and Tribal organizations are able to develop culturally appropriate services and interventions for prenatal alcohol and other substance exposure, and interventions for individuals with FASD and other conditions related to prenatal substance exposure and their families. .
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Sec. 3
Programs for fetal alcohol spectrum disorders
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