Programs for fetal alcohol spectrum disorders

(a)

In general

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:

399H.

Programs for fetal alcohol spectrum disorders

(a)

Definition

In this part, the terms fetal alcohol spectrum disorders and FASD mean the range of effects that can occur in an individual who is prenatally exposed to alcohol. Such effects may include physical, mental, behavioral, and learning disabilities, with possible lifelong implications. (b)

Research on fetal alcohol spectrum disorders and related conditions

(1)

In general

The Secretary, acting through the Director of the National Institutes of Health and in coordination with the Interagency Coordinating Committee on Fetal Alcohol Spectrum Disorders under section 399H–1, shall— (A)establish a research agenda for FASD; and (B)award grants, contracts, or cooperative agreements to public or private nonprofit entities to pay all or part of carrying out research under such agenda. (2)

Types of research

In carrying out paragraph (1), the Secretary, acting through the Director of the National Institute of Alcohol Abuse and Alcoholism (referred to in this part as the Director of the Institute), shall continue to conduct and expand national and international research in coordination with other Federal agencies that includes— (A)the most promising avenues of research in FASD diagnosis, intervention, and prevention; (B)factors that may mitigate the effects of fetal alcohol exposure; and (C)other research that the Director of the Institute determines to be appropriate with respect to conditions that develop as a result of in-utero substance exposure. (c)

Surveillance, public health research, and prevention activities

(1)

In general

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. (2)

Surveillance, public health research, and prevention

In carrying out this subsection, the Secretary shall— (A)integrate into clinical practice the evidence-based standard case definition for diagnosis of fetal alcohol syndrome and, in collaboration with the Director of the Institute, the Director of the Centers for Disease Control and Prevention, the Interagency Coordinating Committee on Fetal Alcohol Spectrum Disorders established under section 399H–1, researchers, and other experts in the field, develop standard, evidence-based clinical diagnostic guidelines, and criteria for all other fetal alcohol spectrum disorders; (B)conduct applied public health prevention research to identify evidence-based strategies for reducing alcohol-exposed pregnancies in women at high risk for alcohol-exposed pregnancies; (C)disseminate and provide the necessary training and support to implement evidence-based strategies developed under subparagraph (B) to— (i)hospitals, Federally-qualified health centers, residential and outpatient substance use treatment programs, and other appropriate health care providers; (ii)educational settings; (iii)social work and child welfare offices; (iv)foster care providers and adoption agencies; (v)State offices and other agencies providing services to individuals with disabilities; (vi)mental health treatment facilities; and (vii)other entities that the Secretary determines to be appropriate; (D)conduct activities related to risk factor surveillance, including the biannual monitoring and reporting of alcohol consumption among pregnant women and women of childbearing age; (E)disseminate and evaluate brief behavioral intervention strategies and referrals aimed at preventing alcohol-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; (F)disseminate comprehensive alcohol and pregnancy and FASD information, resources, and services to families and caregivers, professionals, and the public; and (G)coordinate with affiliated State and local systems and organizations on activities with respect to the prevention of FASD and related conditions for pregnant mothers. (d)

Building State FASD systems

(1)

In general

The Secretary, acting through the Administrator of the Health Resources and Services Administration, shall award grants, contracts, or cooperative agreements to States for the purpose of developing and implementing a statewide FASD strategic plan, establishing or expanding statewide programs of surveillance, screening and diagnosis, prevention, and clinical intervention and support for individuals with FASD and their families. (2)

Eligibility

To be eligible to receive a grant, contract, or cooperative agreement under paragraph (1), a State shall prepare and submit to the Secretary an application at such time, in such manner, and containing such information as the Secretary may require. The application shall include— (A)evidence of the establishment of a State advisory group composed of State agencies, local governmental entities, and Indian Tribes and Tribal organizations; and (B)private sector stakeholders whose purpose is to develop a statewide strategic plan and make recommendations for the prevention of FASD, screening and diagnosis, and clinical intervention and support for individuals with FASD and their families. (3)

Strategic plan

The statewide strategic plan required under paragraph (1) shall include— (A)identification of existing State and local programs and systems that could be used to identify and assist individuals with FASD, related conditions, and prevent alcohol consumption during pregnancy; (B)identification of barriers to access to FASD diagnostic services or to programs to assist individuals with FASD or women at risk for substance abuse and alcohol-exposed pregnancies; and (C)proposals to eliminate barriers to prevention and treatment programs. (4)

Restrictions on and use of funds

Amounts received under a grant, contract, or cooperative agreement under paragraph (1) shall be used for one or more of the following activities: (A)Providing educational and supportive services to families of individuals and families with FASD. (B)Establishing a statewide surveillance system. (C)Including FASD education in State, medical, and health care (including mental health care) university programs. (D)Collecting, analyzing, and interpreting data. (E)Developing, implementing, and evaluating population-based and targeted prevention programs for FASD, including public awareness campaigns. (F)Referring individuals with FASD to appropriate support services. (G)Implementing recommendations from relevant agencies and organizations, including the State advisory group, on the identification and prevention of FASD, and intervention programs or services for individuals with FASD. (H)Providing training to health care (including mental health care) providers on the prevention, identification, and treatment of FASD. (I)Disseminating information about FASD and the availability of support services to families and individuals with FASD. (J)Other activities, as the Secretary determines appropriate. (5)

Other contracts and agreements

A State may carry out activities under paragraph (4) through contracts or cooperative agreements with public and private nonprofit entities with a demonstrated expertise in FASD prevention and intervention services. (e)

Promoting community partnerships

(1)

In general

The Secretary, acting through the Administrator of Health and Resource Services and 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 the services available to individuals with FASD such as surveillance, screening, prevention, treatment, and support services. (2)

Eligible entities

To be eligible to receive a grant, contract, or cooperative agreement under paragraph (1), a entity shall— (A)be a public or private nonprofit entity, which may be— (i)a health care provider or health professional; (ii)a primary or secondary school; (iii)a social work or child welfare office; (iv)an incarceration, detainment facility, or judicial system for juveniles and adults; (v)an FASD organization, parent-led group, or other organization that supports and advocates for individuals with FASD; (vi)an Indian Tribe or Tribal organization; (vii)an early childhood intervention facility; (viii)any other entity the Secretary determines to be appropriate; or (ix)a consortium of any of the entities described in clauses (i) through (viii); and (B)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, include substantive participation of a broad range of entities that work with or provide services for individuals with FASD. (3)

Activities

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: (A)Integrating FASD services into existing programs and services available in the community. (B)Conducting a needs assessment to identify services that are not available in a community. (C)Developing and implementing community-based initiatives to prevent, screen, diagnose, treat, and provide support services to individuals with FASD and their families. (D)Disseminating information about FASD and the availability of support services. (E)Developing and implementing a community-wide public awareness and outreach campaign focusing on the dangers of drinking alcohol while pregnant. (F)Providing mentoring or other support to families of individuals with FASD. (G)Other activities, as the Secretary determines appropriate. (f)

Development of best practices and models of care

(1)

In general

The Secretary, in coordination with the Administrator of Health Resources 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 best practices for— (A)providing early childhood intervention or educating children with FASD, including— (i)activities and programs designed specifically for the identification, treatment, and education of such children; and (ii)curricula development and credentialing of teachers, administrators, and social workers who implement such programs and provide early childhood intervention; (B)educating judges, attorneys, probation officers, social workers, child advocates, law enforcement officers, prison wardens, alternative incarceration administrators, and incarceration officials on how to screen, identify, treat, and support individuals with FASD within the child welfare, juvenile, and criminal justice systems, including— (i)programs designed specifically for the identification, treatment, and education of individuals with FASD; and (ii)curricula development and credentialing within the justice and child welfare systems for individuals who implement such programs; (C)educating adoption or foster care agency officials about available and necessary services for children with FASD, including— (i)programs designed specifically for screening and identification, treatment, and education of individuals with FASD; and (ii)education and training for potential adoptive or foster parents of a child with FASD; and (D)educating health and mental health, and substance use, providers about available and necessary services for children with FASD, including— (i)programs designed specifically for screening and identification, and both health and mental health treatment, of individuals with FASD; and (ii)curricula development and credentialing within the health and mental health and substance abuse systems for individuals who implement such programs. (2)

Application

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 reasonably require. (g)

Transitional services

(1)

In general

The Secretary, in coordination with the Administrator of the Health Resources and Services Administration, shall award demonstration grants, contracts, and cooperative agreements to States, Indian Tribes and Tribal organizations, and nongovernmental organizations for the purpose of establishing integrated systems for providing transitional services for adults affected by prenatal alcohol exposure and evaluating the effectiveness of such services. (2)

Application

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. (3)

Allowable uses

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: (A)Provide housing assistance to, or specialized housing for, adults with FASD. (B)Provide vocational training and placement services for adults with FASD. (C)Provide medication monitoring services for adults with FASD. (D)Provide training and support to organizations providing family services or mental health programs and other organizations that work with adults with FASD. (E)Establish and evaluate housing models specially designed for adults with FASD. (F)Other services or programs, as the Secretary determines appropriate. (h)

Authorization of appropriations

There are authorized to be appropriated to carry out this section, such sums as may be necessary for each of fiscal years 2020 through 2025.

(b)

Services for individuals with Fetal Alcohol Spectrum Disorders

Subpart 2 of part B of title V of the Public Health Service Act (42 U.S.C. 290bb–21 et seq.) is amended by inserting after section 519B the following:

519C.

Services for individuals with fetal alcohol syndrome

(a)

In general

The Secretary may make awards of grants, cooperative agreements, or contracts to public and nonprofit private entities, including Indian tribes and tribal organizations, to provide services to individuals diagnosed with fetal alcohol syndrome or alcohol-related birth defects. (b)

Use of funds

An award under subsection (a) may, subject to subsection (d), be used to— (1)screen and test individuals to determine the type and level of services needed; (2)develop a comprehensive plan for providing services to the individual; (3)provide mental health counseling; (4)provide substance abuse prevention services and treatment, if needed; (5)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; (6)provide vocational services; (7)provide health counseling; (8)provide housing assistance; (9)parenting skills training; (10)overall case management; (11)supportive services for families of individuals with Fetal Alcohol Syndrome and other prenatal alcohol-related disorders; (12)provide respite care for caretakers of individuals with Fetal Alcohol Syndrome and other prenatal alcohol-related disorders; (13)recruit and train mentors for individuals with Fetal Alcohol Syndrome and other prenatal alcohol-related disorders; (14)provide educational and supportive services to families of individuals with Fetal Alcohol Spectrum Disorders; and (15)provide other services and programs, to the extent authorized by the Secretary after consideration of recommendations made by the Interagency Coordinating Committee on Fetal Alcohol Spectrum Disorders. (c)

Requirements

To be eligible to receive an award under subsection (a), an applicant shall— (1)demonstrate that the program will be part of a coordinated, comprehensive system of care for such individuals; (2)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; (3)show a history of working with individuals with fetal alcohol syndrome or alcohol-related birth defects; (4)provide assurance that the services will be provided in a culturally and linguistically appropriate manner; and (5)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. (d)

Relationship to payments under other programs

An award may be made under subsection (a) 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— (1)under any State compensation program, under an insurance policy, or under any Federal or State health benefits program; or (2)by an entity that provides health services on a prepaid basis. (e)

Duration of awards

With respect to an award under subsection (a), the period during which payments under such award are made to the recipient may not exceed 5 years. (f)

Evaluation

The Secretary shall evaluate each project carried out under subsection (a) and shall disseminate the findings with respect to each such evaluation to appropriate public and private entities. (g)

Funding

(1)

Authorization of appropriations

For the purpose of carrying out this section, there are authorized to be appropriated such sums as may be necessary for each of fiscal years 2020 through 2025. (2)

Allocation

Of the amounts appropriated under paragraph (1) for a fiscal year, not less than $300,000 shall, for purposes relating to fetal alcohol syndrome and alcohol-related birth defects, be made available for collaborative, coordinated interagency efforts with the National Institute on Alcohol Abuse and Alcoholism, 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 Centers for Disease Control and Prevention, the Department of Education, and the Department of Justice.

(c)

Prevention, intervention, and services in the education system

(1)

General Rule

The Secretary of Education shall be the lead Federal official with responsibility over education-related issues with respect to children with fetal alcohol spectrum disorders. (2)

Specific responsibilities

The Secretary of Education shall direct the Office of Special Education and Rehabilitative Services to— (A)conduct and disseminate training on a nationwide fetal alcohol spectrum disorders surveillance campaign to local educational agencies (as defined in section 8101 of the Elementary and Secondary Education Act of 1965 (20 U.S.C. 7801)) and early childhood education providers in collaboration with the National Center on Birth Defects and Developmental Disabilities under section 399H(b) of the Public Health Service Act (as amended by subsection (a)); (B)collect, collate, and disseminate (through the internet website of the Department of Education, at teacher-to-teacher workshops, and through other means) evidence-based practices that are effective in the education and support of children with fetal alcohol syndrome disorders (including any special techniques on how to assist children with fetal alcohol spectrum disorders in both special and traditional educational settings, and including such practices that incorporate information concerning the identification, behavioral supports, teaching, and learning associated with fetal alcohol spectrum disorders) to— (i)education groups such as the National Association of School Boards, the National Education Association, the American Federation of Teachers, the National Association of Elementary School Principals, and the National Association of Secondary School Principals; (ii)recipients of a grant under the 21st Century Community Learning Center program established under part B of title IV of the Elementary and Secondary Education Act of 1965 (20 U.S.C. 7171 et seq.) and other after school program personnel; and (iii)Parent Teacher Associations, Parent Information and Training Centers, and other appropriate education organizations; (C)ensure that, in administering the Individuals with Disabilities Education Act (20 U.S.C. 1400 et seq.), parents, educators, and advocates for children with disabilities are aware that children with fetal alcohol spectrum disorders have the right to access general curriculum under the least restrictive environment; (D)collaborate with other Federal agencies to include information or activities relating to fetal alcohol spectrum disorders in programs related to maternal health, health education, and sex education; (E)collaborate with the Secretary of Health and Human Services to ensure that fetal alcohol spectrum disorders prevention grants under section 399H of the Public Health Service Act (as amended by subsection (a)) include education concerning fetal alcohol spectrum disorders in the sexual and health education curricula of schools; and (F)support efforts by peer advisory networks of adolescents in schools to discourage the use of alcohol while pregnant or considering getting pregnant. (3)

Definition

For purposes of this subsection, the term fetal alcohol spectrum disorders has the meaning given such term in section 399H(a) of the Public Health Service Act, as amended by subsection (a). (d)

Prevention, intervention, and services in the justice system

The Attorney General shall direct the Office of Juvenile Justice and Delinquency Prevention to— (1)develop screening procedures for juveniles who violate laws as described in section 5031 of title 18, United States Code, juveniles with chronic truancy, and other individuals, and conduct training on a nationwide fetal alcohol spectrum disorders surveillance campaign for the Department of Justice in collaboration with the efforts of the National Center on Birth Defects and Developmental Disabilities under section 399H(b) of the Public Health Service Act (as amended by subsection (a)); (2)introduce training curricula on how to most effectively identify and interact with individuals with fetal alcohol spectrum disorders in both the juvenile and adult justice systems, and investigate incorporating information about the identification, prevention, and treatment of the disorders into justice professionals' credentialing requirements; (3)promote the tracking of individuals entering the juvenile justice system with at-risk backgrounds that indicates them as high probability for having a fetal alcohol spectrum disorder, especially individuals whose mothers have a record of heavy or binge drinking during pregnancy as reported by the appropriate child protection agency; (4)educate judges, attorneys, probation officers, child advocates, law enforcement officers, prison wardens, alternative incarceration administrators, and incarceration officials on how to treat, respond to, and support individuals suffering from fetal alcohol spectrum disorders within the juvenile and adult justice systems, including— (A)programs designed specifically for the identification, treatment, and education of such children; (B)curricula development and credentialing of teachers, administrators, and social workers who implement such programs; and (C)how fetal alcohol spectrum disorders impact an individual's interaction with law enforcement and whether diversionary sentencing options or fetal-alcohol-spectrum-disorder-informed interventions and programs for such individuals are appropriate; (5)conduct a study on the inadequacies of how the current system processes children with certain developmental delays and subsequently implement alternative methods of incarceration and treatment that are more effective for youth offenders identified to have a fetal alcohol spectrum disorder; and (6)collaborate with fetal alcohol spectrum disorders professionals and implement transition programs for juveniles and adults with fetal alcohol spectrum disorders who are released from incarceration. (e)

Sunset provision

Section 399K of the Public Health Service Act (42 U.S.C. 280f–3) is amended— (1)by striking National Task Force have been appointed under section 399H(d)(1) and inserting Interagency Coordinating Committee on Fetal Alcohol Spectrum Disorders under section 399H–1(c); and (2)by adding at the end the following: Not later than the date that is 4 years after all such members have been appointed, the Secretary shall issue to Congress recommendations on whether the programs under this part should be extended..

Interagency coordinating committee on fetal alcohol spectrum disorders

Part O of title III of the Public Health Service Act (42 U.S.C. 280F et seq.), as amended by section 2(a), is further amended by inserting after section 399H the following:

399H–1.

Interagency coordinating committee on fetal alcohol spectrum disorders

(a)

In general

The Secretary, acting through the Director of the National Institute of Alcohol Abuse and Alcoholism, shall maintain the Interagency Coordinating Committee on Fetal Alcohol Spectrum Disorders (referred to in this section as the Committee) with both Federal and non-Federal members and a chairperson appointed by the Director, to coordinate and recommend efforts within the Department of Health and Human Services and other relevant Federal departments and agencies concerning FASD. (b)

Responsibilities

In carrying out its duties under this section, the Committee shall— (1)monitor FASD research and services and, to the extent practicable, services and support activities across all relevant Federal departments and agencies, including coordination of Federal activities with respect to FASD; (2)develop a summary of advances in FASD research related to prevention, treatment, early screening, diagnosis, and interventions; (3)make recommendations for the FASD research agenda to the Director of the National Institute of Alcohol Abuse and Alcoholism, as described in section 399H(b)(1)(A); (4)review the 2009 report of the National Task Force on FAS entitled, A Call to Action, and other reports on FASD and make recommendations on a national strategic plan to reduce the prevalence and the associated impact of FASD and improve the quality of life for individuals living with FASD, which shall include— (A)proposed Federal budgetary requirements for FASD research and related services and support activities for individuals with FASD; (B)recommendations to ensure that FASD research, and services and support activities to the extent practicable, of the Department of Health and Human Services and of other Federal departments and agencies are not unnecessarily duplicative; (C)identification of gaps or barriers for individuals living with, or impacted by, FASD in accessing diagnostic, early intervention, and support services; (D)identification of prevention strategies, including education campaigns and options, such as product warnings and other mechanisms to raise awareness of the risks associated with prenatal alcohol consumption; (E)identification of best practice approaches to reduce the incidence of FASD; and (F)identification of best practice approaches and models of care to increase support and treat individuals with FASD, and their families; and (5)submit to Congress and the President— (A)an update on the summary of advances described in paragraph (3), one year after the date of enactment of the Advancing FASD Research, Prevention, and Services Act; (B)an update to the national strategic plan described in paragraph (4), including any progress made in achieving the objectives outlined in such strategic plan, one year after the date of enactment of the Advancing FASD Research, Prevention, and Services Act; and (C)a final report that provides a summary of advances described in paragraph (3) and an update to the national strategic plan described in paragraph (4), not later than September 30, 2025. (c)

Membership

The Committee shall be composed of representatives as described in paragraphs (1) and (2). (1)

Federal membership

Members of the Committee shall include representatives of the following Federal agencies: (A)The National Institute on Alcohol Abuse and Alcoholism. (B)The Centers for Disease Control and Prevention. (C)The Health Resources and Services Administration. (D)Other agencies with responsibilities for FASD, substance use prevention and treatment, maternal health, child health and welfare, and rehabilitative services, which may include Federal agencies that interact with individuals with FASD in the educational and correctional systems. (2)

Non-Federal members

Additional non-Federal public and private sector members of the Committee shall be appointed by the Director of the National Institute on Alcohol Abuse and Alcoholism, including— (A)one individual with FASD or a parent or legal guardian of an individual with FASD; (B)one representative of the National Organization on Fetal Alcohol Syndrome and one representative of a leading statewide advocacy and service organization for individuals with FASD; (C)one representative of the FASD Center of Excellence established under section 399H–2, and one representative of a State advisory group engaged in building a State FASD system pursuant to section 399H(d); and (D)multiple individuals with expertise on FASD who will serve as representatives of private sector organizations that engage on FASD issues on behalf of pediatricians, obstetricians and gynecologists, mental health care providers, family court judges, juvenile judges and justice programming and services, and special education and social work professionals. (d)

Authorization of appropriations

There are authorized to be appropriated to carry out this section such sums as may be necessary for each of fiscal years 2020 through 2025.