[Congressional Bills 117th Congress]
[From the U.S. Government Publishing Office]
[S. 2238 Introduced in Senate (IS)]
<DOC>
117th CONGRESS
1st Session
S. 2238
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 24, 2021
Ms. Murkowski (for herself and Ms. Klobuchar) 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 Representatives of the
United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Advancing FASD Research, Services
and Prevention Act'' or the ``FASD Respect Act''.
SEC. 2. FINDINGS.
Congress finds as follows:
(1) Fetal Alcohol Spectrum Disorders (referred to in this
section as ``FASD''), is a serious and complex public health
issue impacting individuals, families, and communities
throughout the United States, regardless of race, sex, culture,
or geography. This Act provides an opportunity for our Nation
to explore strategies to not only prevent the adverse effects
of prenatal alcohol exposure (referred to in this section as
``PAE'') but heal individual, historical, and cultural traumas.
(2) Exposure to alcohol has long-lasting consequences for a
developing fetus, which may lead to a range of life-long
physical, mental, social, and emotional problems. There is no
known safe amount of alcohol use during pregnancy or while
trying to get pregnant. There is also no safe time during
pregnancy to drink. All types of alcohol are equally harmful,
including all wines and beer.
(3) The most recent prevalence study identified as many as
1 in 20 first graders across the country are affected by PAE.
Given that nearly 45 percent of pregnancies are unintended and
women often don't know that they are pregnant until they are 6
weeks along or more, it's easy to understand how a woman could
drink alcohol while expecting. Research shows that solely
focusing on individual women's behavior as FASD prevention
strategy perpetuates stigma and blame on biological mothers,
individuals impacted by FASD, and the condition itself.
(4) Although research shows that white, college-educated,
middle- to upper-class women are the most likely group to drink
during pregnancy, one of the common misnomers about FASD is
that it is an ``indigenous issue''. Continued surveillance,
stigmatization, and stereotyping of Indigenous populations may
contribute to the misbelief that FASD is over-represented in
these communities.
(5) In their recent landmark survey, ``Lay of the Land:
Equality vs Equity'', the FASD Changemakers, comprised of young
adults with FASD, documented the social determinants of health
that lead to the detrimental health disparities people with
FASD often endure, including victimization resulting in
incarceration, homelessness, reduced access to health care,
vulnerabilities to substance misuse, and unemployment.
(6) The higher prevalence of FASD in criminal justice and
foster care systems has been documented. Nearly 1 out of 4
children in juvenile corrections has FASD, and prevalence
estimates among children in the foster care systems range from
23 percent to 60 percent. Prevalence in adult corrections
ranges from 11 percent to 25 percent.
(7) The National Academy of Medicine recommendations for a
broad Federal response formed the basis of the Fetal Alcohol
Syndrome and Fetal Alcohol Effect Prevention and Services Act
of 1998 that authorized $27,000,000 for a National Task Force
on Fetal Alcohol Syndrome and grant programs at the National
Institute on Alcohol Abuse and Alcoholism, the Centers for
Disease Control and Prevention, and the Substance Abuse and
Mental Health Services Administration.
(8) In 2009, the National Task Force on Fetal Alcohol
Syndrome reported FASD diagnostic capacity and FASD-informed
services insufficient in the United States, resulting in
countless individuals with FASD remaining unrecognized or
misdiagnosed.
(9) Despite PAE remaining the leading preventable cause of
birth defects and neurodevelopmental disabilities in the United
States, the authority for the National Task Force on Fetal
Alcohol Syndrome expired, SAMHSA funding for FASD ended in
2015, and other Federal and State FASD-related funding
declined.
(10) FASD is preventable. Although there is no cure for
individuals impacted by FASD, research shows that intervention
services and supports that include social, environmental, and
educational strategies can prevent subsequent trauma to the
individual, the individual's caregivers, and society.
(11) Building coordinated State and Tribal FASD systems of
care that offer integrated culturally appropriate services and
supports grounded in best practices can mitigate the harms
created by historical and cultural trauma.
SEC. 3. 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:
``SEC. 399H. PROGRAMS FOR FETAL ALCOHOL SPECTRUM DISORDERS.
``(a) Definition.--In this part--
``(1) 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
``(2) 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.
``(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, shall--
``(A) establish a research program 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
research program.
``(2) Types of research.--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--
``(A) the most promising avenues of research in
FASD diagnosis, intervention, and prevention;
``(B) factors that may mitigate the effects of
prenatal alcohol and other substance exposure including
culturally relevant factors and social determinants of
health; and
``(C) 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.
``(3) Authorization of appropriations.--To carry out this
subsection, there is authorized to be appropriated $30,000,000
for each of fiscal years 2022 through 2027.
``(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 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;
``(B) 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;
``(C) 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;
``(D) disseminate and provide the necessary
training and support to implement culturally-
appropriate or evidence-based strategies developed
under subparagraph (C) to--
``(i) hospitals, Federally-qualified health
centers, residential and outpatient substance
disorder treatment programs, and other
appropriate health care providers;
``(ii) educational settings;
``(iii) social work and child protection
service providers;
``(iv) foster care providers and adoption
agencies;
``(v) State or Tribal offices and other
agencies providing services to individuals with
disabilities;
``(vi) mental health treatment facilities;
``(vii) Indian Tribes and Tribal
organizations;
``(viii) 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
``(ix) other entities that the Secretary
determines to be appropriate;
``(E) conduct activities related to risk factor
surveillance;
``(F) 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;
``(G) 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;
``(H) 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
``(I) coordinate FASD activities with affiliated
State, Tribal and local systems and organizations with
respect to the prevention of alcohol and other
substance-exposed pregnancies.
``(3) Authorization of appropriations.--To carry out this
subsection, there is authorized to be appropriated $13,000,000
for each of fiscal years 2022 through 2027.
``(d) Building State and Tribal 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 and Indian Tribes for the purpose of
establishing ongoing comprehensive and coordinated State and
Tribal FASD multidisciplinary, diverse coalitions to--
``(A) develop systems of care for--
``(i) the prevention of FASD and other
adverse conditions as a result of prenatal
substance exposure; and
``(ii) the identification, treatment and
support of individuals with FASD or other
adverse conditions from prenatal substance
exposure and support for their families;
``(B) 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
``(C) update or develop implementing and evaluating
State and Tribal FASD strategic plans to--
``(i) 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;
``(ii) 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;
``(iii) 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
``(iv) 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.
``(2) Eligibility.--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--
``(A) evidence that the eligible entity designated
in the application have or will have authority to
implement programs described in this subsection; and
``(B) 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--
``(i) the formation of a FASD advisory
coalition of diverse, public and private
representatives from multiple disciplines that
may include--
``(I) 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; and
``(II) 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
``(ii) the development of a State or Tribal
strategic plan that--
``(I) contains recommendations,
action steps, and deliverables for
improving social determinants of
health;
``(II) recommends actions for
prevention of FASD and other conditions
related to prenatal substance exposure;
``(III) integrates culturally-
appropriate, best practices or
evidence-based practices on screening,
identification and treatment into
existing systems of care;
``(IV) provides for FASD-informed
clinical and therapeutic interventions;
``(V) provides for FASD-informed
supports and services for families and
individuals with FASD and other
conditions from prenatal substance
exposure across their lifetimes;
``(VI) identifies--
``(aa) existing FASD or
other programs related to
prenatal substance exposures in
the State or Indian Tribe,
including--
``(AA) FASD
primary, secondary and
tertiary prevention
programs;
``(BB) prenatal
screening, assessment
or diagnostic services;
and
``(CC) support and
service programs for
individuals with FASD
and their families;
``(bb) 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;
``(cc) 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; and
``(dd) 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;
``(VII) 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;
``(VIII) 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;
``(IX) recognizes the impact of
historical, cultural, and other trauma
of individuals in the design and
application of all programming; and
``(X) recognizes the lived
experiences of birth mothers and those
with FASD and their families in the
design and application of all
programming.
``(3) Restrictions on and use of funds.--Amounts received
under a grant, contract, or cooperative agreement under this
subsection shall be used for one or more of the following
activities:
``(A) 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.
``(B) Providing educational and supportive services
to individuals with FASD and other conditions related
to prenatal substance exposure and their families.
``(C) Establishing a FASD statewide surveillance
system.
``(D) Including FASD information in State medical
and mental health care and education programs at
schools of higher education.
``(E) Collecting, analyzing, and interpreting data.
``(F) 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.
``(G) 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.
``(H) Developing, implementing, and evaluating
population-based and targeted prevention programs for
FASD, including public awareness campaigns.
``(I) 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.
``(J) Referring individuals with FASD and other
conditions related to prenatal substance exposure to
appropriate FASD-informed support services.
``(K) Providing for State and Tribal FASD
coordinators.
``(L) 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.
``(M) Providing training to education, justice, and
social service system professionals to become FASD-
informed and FASD-engaged in their practices.
``(N) Including FASD in training for workforce
development and disability accessibility.
``(O) Supporting peer-to-peer certification
programs for individuals with FASD.
``(P) Developing FASD-informed certification
programs.
``(Q) 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.
``(R) 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.
``(S) Other activities, as the Secretary determines
appropriate or as recommended by the National Advisory
Council on FASD under section 399H-1.
``(4) Other contracts and agreements.--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.
``(5) Report to congress.--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--
``(A) information concerning the number of States
receiving grants;
``(B) 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;
``(C) information concerning systemic or other
barriers to screening for prenatal alcohol and other
substance exposure in existing systems of care,
including--
``(i) the child welfare system;
``(ii) maternal and early child health care
and alcohol and other substance use disorder
treatment programs;
``(iii) primary or secondary education
systems; and
``(iv) juvenile and adult systems of
justice;
``(D) 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
``(E) 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.
``(6) Authorization of appropriations.--
``(A) In general.--To carry out this subsection,
there is authorized to be appropriated $32,000,000 for
each of fiscal years 2022 through 2027.
``(B) Administrative and employment expenses.--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.
``(C) Tribal set aside.--Up to 20 percent of the
grants, contracts, or cooperative agreements awarded
under this subsection shall be reserved for Indian
Tribes and Tribal organizations.
``(e) Promoting Community Partnerships.--
``(1) In general.--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.
``(2) Eligible entities.--To be eligible to receive a
grant, contract, or cooperative agreement under paragraph (1),
an entity shall--
``(A) be a public or private nonprofit entity that
is--
``(i) a health care provider or health
professional;
``(ii) a primary or secondary school;
``(iii) a social work or child protection
service provider;
``(iv) an incarceration facility, or State
or local judicial system for juveniles and
adults;
``(v) an FASD organization, parent-led
group, or other organization that supports and
advocates for individuals with FASD and their
families;
``(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, provide evidence of
substantive participation with 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 relating to FASD and other conditions related to
prenatal substance exposure:
``(A) Integrating FASD-informed and culturally-
appropriate practices 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 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.
``(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
individuals with FASD and their families.
``(G) Other activities, as the Secretary determines
appropriate, or in consideration of recommendations
from the National Advisory Council on FASD established
under section 399H-1.
``(4) Authorization of appropriations.--To carry out this
subsection, there is authorized to be appropriated $5,000,000
for each of fiscal years 2022 through 2027.
``(f) Development of Best Practices and Models of Care.--
``(1) In general.--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--
``(A) providing intervention and education of
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 childhood interventions;
``(B) 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--
``(i) programs designed specifically for
the identification, assessment, treatment, and
education of individuals with FASD; and
``(ii) curricula development and
credentialing within the adult and juvenile
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, assessment and identification,
treatment, and education of individuals with
FASD; and
``(ii) ongoing and consistent education and
training for potential adoptive or foster
parents of a child with FASD;
``(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; and
``(E) identifying and implementing culturally-
appropriate best practice models for reducing alcohol
and other substance exposed pregnancies in women at
high risk of such pregnancies.
``(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 require.
``(3) Authorization of appropriations.--To carry out this
subsection, there is authorized to be appropriated $5,000,000
for each of fiscal years 2022 through 2027.
``(g) Transitional Services.--
``(1) In general.--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.
``(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 FASD-informed vocational training and
placement services for adults with FASD.
``(C) Provide medication monitoring services for
adults with FASD.
``(D) Provide FASD-informed 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) Recruit, train and provide mentors for
individuals with FASD.
``(G) Other services or programs, as the Secretary
determines appropriate.
``(4) Authorization of appropriations.--To carry out this
subsection, there is authorized to be appropriated $5,000,000
for each of fiscal years 2022 through 2027.
``(h) Services for Individuals With Fetal Alcohol Spectrum
Disorders.--
``(1) In general.--The Secretary, in coordination with 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.
``(2) Use of funds.--An award under paragraph (1) may,
subject to paragraph (4), be used to--
``(A) screen and test individuals to determine the
type and level of services needed;
``(B) develop a FASD-informed comprehensive plan
for providing services to the individuals;
``(C) provide FASD-informed mental health
counseling;
``(D) provide FASD-informed substance abuse
prevention services and treatment, if needed;
``(E) 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;
``(F) provide FASD-informed vocational services;
``(G) provide FASD-informed health counseling;
``(H) provide FASD-informed housing assistance;
``(I) conduct FASD-informed parenting skills
training;
``(J) develop and implement overall FASD-informed
case management;
``(K) provide supportive services for families of
individuals with FASD;
``(L) provide respite care for caretakers of
individuals with FASD;
``(M) recruit, train and provide mentors for
individuals with FASD;
``(N) provide FASD-informed educational and
supportive services to families of individuals with
FASD; and
``(O) provide other services and programs, to the
extent authorized by the Secretary after consideration
of recommendations made by the National Advisory
Council on FASD.
``(3) Requirements.--To be eligible to receive an award
under paragraph (1), an applicant shall--
``(A) demonstrate that the program will be part of
a coordinated, comprehensive system of care for such
individuals;
``(B) 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;
``(C) have a qualified staff of medical, mental
health or other professionals with a history of working
with individuals with FASD;
``(D) provide assurance that the services will be
provided in a culturally and linguistically appropriate
manner; and
``(E) 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.
``(4) Relationship to payments under other programs.--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--
``(A) under any State compensation program, under
an insurance policy, or under any Federal or State or
Tribal health benefits programs; or
``(B) by an entity that provides health services on
a prepaid basis.
``(5) Duration of awards.--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.
``(6) Evaluation.--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.
``(7) Funding.--
``(A) Authorization of appropriations.--For the
purpose of carrying out this subsection, there is
authorized to be appropriated $10,000,000 for each
fiscal years 2022 through 2027.
``(B) Allocation.--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--
``(i) the evaluation of existing programs
for efficacy;
``(ii) 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;
``(iii) 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
``(iv) 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.''.
SEC. 4. NATIONAL ADVISORY COUNCIL ON FSAD.
Part O of title III of the Public Health Service Act (42 U.S.C.
280f et seq.), as amended by section 2, is further amended by inserting
after section 339H the following:
``SEC. 399H-1. NATIONAL ADVISORY COUNCIL ON FASD.
``(a) In General.--The Secretary shall establish an advisory
council to be known as the National Advisory Council on FASD (referred
to in this section as the `Council') to foster coordination and
cooperation among all Federal and non-Federal members and their
constituencies that conduct or support FASD and other conditions
related to prenatal substance exposure research, programs, and
surveillance, and otherwise meet the general needs of populations
actually or potentially impacted by FASD and other conditions related
to prenatal substance exposure.
``(b) Membership.--The Council shall be composed of 23 members as
described in paragraphs (1) and (2).
``(1) Federal membership.--Members of the Council shall
include representatives of the following Federal agencies:
``(A) The National Institute on Alcohol Abuse and
Alcoholism.
``(B) The National Institute on Drug Abuse.
``(C) The Centers for Disease Control and
Prevention.
``(D) The Health Resources and Services
Administration.
``(E) The Substance Abuse and Mental Health
Services Agency.
``(F) The Office of Special Education and
Rehabilitative Services.
``(G) The Office of Justice Programs.
``(H) The Indian Health Service.
``(I) The Interagency Coordinating Committee on
Fetal Alcohol Spectrum Disorders.
``(J) The Agency for Healthcare Research and
Quality.
``(2) Non-federal members.--Additional non-Federal public
and private sector members of the Council shall be nominated by
the Interagency Coordinating Committee on Fetal Alcohol
Spectrum Disorders and appointed by the Secretary, and shall be
staffed by the Office of the Assistant Secretary for Planning
and Evaluation of the Department of Health and Human Services.
Such members shall include--
``(A) at least one individual with FASD or a parent
or legal guardian of an individual with FASD;
``(B) at least one individual or a parent or legal
guardian of an individual with a condition related to
prenatal substance exposure;
``(C) at least one birth mother of an individual
with FASD;
``(D) at least one representative from the FASD
Study Group of the Research Society on Alcoholism;
``(E) at least one representative of the National
Organization on Fetal Alcohol Syndrome;
``(F) at least one representative of a leading
statewide advocacy and service organization for
individuals with FASD and their families;
``(G) at least one representative of the FASD
Center for Excellence established under section 399H-3;
``(H) at least 2 representatives from State or
Tribal advisory groups receiving an award under section
399H(d); and
``(I) representatives with interest and expertise
in FASD from the private sector of pediatricians,
obstetricians and gynecologists, substance abuse and
mental health care providers, family and juvenile court
judges and justice and corrections programming and
services, or special education and social work
professionals.
``(3) Appointment timing.--The members of the Council
described in paragraph (2) shall be appointed by the Secretary
not later than 6 months after the date of enactment of the
Advancing FASD Research, Services and Prevention Act.
``(c) Functions.--The Council shall--
``(1) advise Federal, State, Tribal and local programs and
research concerning FASD and other conditions related to
prenatal substance exposure, including programs and research
concerning education and public awareness for relevant service
providers, reducing the incidence of prenatal alcohol and other
substance exposure in pregnancies, medical and mental
diagnosis, interventions for women at-risk of giving birth with
FASD and beneficial services and supports for individuals with
FASD and their families;
``(2) coordinate its efforts with the Interagency Committee
on Fetal Alcohol Spectrum Disorders;
``(3) develop a summary of advances in FASD research
related to prevention, treatment, screening, diagnosis, and
interventions;
``(4) make recommendations for the FASD research program to
the Director of the National Institute of Alcohol Abuse and
Alcoholism;
``(5) review the 2009 report of the National Task Force on
FAS entitled, `A Call to Action' and other reports on FASD and
the adverse impact of prenatal substance exposure;
``(6) develop a summary of advances in practice and
programs relevant to FASD prevention, treatment, early
screening, diagnosis, and interventions; and
``(7) make recommendations on a national agenda to reduce
the prevalence and the associated impact of FASD and other
conditions related to prenatal substance exposure and improve
the quality of life of individuals and families impacted by
FASD or the adverse effects of prenatal substance exposure,
including--
``(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 existing Federal programs
that could be used to identify and assist individuals
with FASD and other conditions related to substance
exposed pregnancies;
``(D) identification of gaps or barriers for
individuals living with, or impacted by, FASD in
accessing diagnostic, early intervention, and support
services;
``(E) 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;
``(F) identification of current diagnostic methods
and practices for the identification of FASD and
identify gaps or barriers for achieving diagnostic
capacity throughout the United States based on current
estimated prevalence of FASD;
``(G) recommendations for research or other
measures to increase diagnostic capacity to meet the
needs of the estimated number of individuals with FASD;
``(H) identification and enhancement of culturally-
appropriate or best practice approaches and models of
care to reduce the incidence of FASD; and
``(I) identification and enhancement of best
practice approaches and models of care to increase
support and treat individuals with FASD, and to make
recommendations for a broad model comprehensive
community approach to the overall problem of prenatal
alcohol and other harmful substance exposure.
``(d) Report to Congress and the President.--The Council shall
submit to Congress and to the President--
``(1) an update on the summary of advances described in
paragraphs (3) and (6) of subsection (c), not later than 2
years after the date of enactment of the Advancing FASD
Research, Services and Prevention Act;
``(2) an update to the national agenda described in
subsection (c)(7), including any progress made in achieving the
objectives outlined in such agenda, not later than 4 years
after the date of enactment of such Act; and
``(3) a final report that provides a summary of advances
described in paragraphs (3) and (6) of subsection (c), and an
update to the national agenda described in subsection (c)(7),
not later than September 30, 2027.
``(e) Authorization of Appropriations.--There is authorized to be
appropriated to carry out this section $2,000,000 for each of fiscal
years 2022 through 2027.''.
SEC. 5. INTERAGENCY COORDINATING COMMITTEE ON FETAL ALCOHOL SPECTRUM
DISORDERS.
Subpart 14 of part C of title IV of the Public Health Service Act
(42 U.S.C. 285n et seq.) is amended by adding at the end the following:
``SEC. 464K. INTERAGENCY COORDINATING COMMITTEE ON FETAL ALCOHOL
SPECTRUM DISORDERS.
``(a) In General.--The Director of the Institute shall provide for
the continuation of the `Interagency Coordinating Committee on Fetal
Alcohol Spectrum Disorders' (referred to in this section as the
`Committee') so that such Committee may--
``(1) coordinate activities conducted by the Federal
Government on FASD, including convening meetings, establishing
work groups, sharing information, and facilitating and
promoting collaborative projects among Federal agencies, the
National Advisory Council on FASD established under section
399H-1, and outside partners;
``(2) 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 in collaboration with
other Federal and outside partners, and
``(3) develop priority areas considering recommendations
from the National Advisory Council on FASD.
``(b) Membership.--Members of the Committee shall include
representatives of the following Federal agencies:
``(1) The National Institute on Alcohol Abuse and
Alcoholism.
``(2) The Centers for Disease Control and Prevention.
``(3) The Health Resources and Services Administration.
``(4) The Office of the Assistant Secretary for Planning
and Evaluation.
``(5) The Office of Juvenile Justice and Delinquency
Prevention.
``(6) Office of Justice Programs of the Department of
Justice.
``(7) The Substance Abuse and Mental Health Services
Administration.
``(8) The Office of Special Education and Rehabilitation
Services.
``(9) The National Institute on Drug Abuse.
``(10) The National Institute of Mental Health.
``(11) The Indian Health Service.
``(12) The Eunice Kennedy Shriver National Institute of
Child Health and Human Development.
``(13) Other Federal agencies with responsibilities related
to FASD prevention or treatment or that interact with
individuals with FASD, including education and correctional
systems, alcohol and substance use disorder prevention and
treatment programs, maternal health, the Medicare and Medicaid
programs under titles XVIII and XIX, respectively, of the
Social Security Act, child health and welfare, rehabilitative
services, and labor and housing grant or entitlement programs.
``(c) Authorization of Appropriations.--There are authorized to be
appropriated to carry out this section $1,000,000 for each of fiscal
years 2022 through 2027.''.
SEC. 6. FASD CENTER FOR EXCELLENCE.
(a) In General.--Part O of title III of the Public Health Service
Act (42 U.S.C. 280f et seq.), as amended by section 4, is further
amended by inserting after section 339H-2 the following:
``SEC. 399H-2. FASD CENTER FOR EXCELLENCE.
``(a) In General.--The Secretary, acting through the Administrator
of the Health Resources and Services Administration, and in
consultation with the Assistant Secretary for Mental Health and
Substance Use, the Director of the Centers for Disease Control, and the
Chair of the Interagency Coordinating Committee on Fetal Alcohol
Spectrum Disorders, shall award up to 4 grants, cooperative agreements,
or contracts to public or nonprofit entities with demonstrated
expertise in FASD prevention, identification, and intervention services
and other adverse conditions related to prenatal substance exposure.
Such awards shall be for the purposes of establishing a FASD Center for
Excellence to build local, Tribal, State, and national capacities to
prevent the occurrence of FASD and other adverse conditions related to
exposure to substances, and to respond to the needs of individuals with
FASD and their families by carrying out the programs described in
subsection (b).
``(b) Programs.--An entity receiving an award under subsection (a)
may use such award for any of the following programs:
``(1) Increasing fasd diagnostic capacity.--Initiating or
expanding diagnostic capacity of FASD by increasing screening,
assessment, identification, and diagnosis in settings such as
clinical practices, educational settings, child welfare, and
juvenile out-of-home placement facilities and adult
correctional systems.
``(2) Public awareness.--Developing and supporting national
public awareness and outreach activities, including the use of
all types of media and public outreach, and the formation of a
diverse speakers bureau to raise public awareness of the risks
associated with alcohol consumption during pregnancy with the
purpose of reducing the prevalence of FASD and improving the
quality of life for those living with FASD and their families.
``(3) Resources and training.--
``(A) Clearinghouse.--Acting as a clearinghouse for
resources on FASD prevention, identification, and
culturally-aware best practices, including the
maintenance of a national data-based directory on FASD-
specific services in States, Indian Tribes, and local
communities.
``(B) Internet-based center.--Providing an
internet-based center that disseminates ongoing
research and resource development on FASD in
administering systems of care for individuals with FASD
across their lifespan.
``(C) Intervention services and best practices.--
Increasing awareness and understanding of efficacious
FASD screening tools and culturally-appropriate
intervention services and best practices by--
``(i) maintaining a diverse national
speakers bureau; and
``(ii) conducting national, regional,
State, Tribal, or peer cross-State webinars,
workshops, or conferences for training
community leaders, medical and mental health
and substance abuse professionals, education
and disability professionals, families, law
enforcement personnel, judges, individuals
working in financial assistance programs,
social service personnel, child welfare
professionals, and other service providers.
``(D) Building capacity.--Building capacity for
State, Tribal, and local affiliates dedicated to FASD
awareness, prevention, and identification and family
and individual support programs and services.
``(4) Technical assistance.--Providing technical assistance
to--
``(A) communities for replicating and adapting
exemplary comprehensive systems of care for individuals
with FASD developed under section 399H(d) and for
replicating and adapting culturally-appropriate best or
model projects of care developed under section 399H(f);
``(B) States and Indian Tribes in developing
statewide or Tribal FASD strategic plans, establishing
or expanding statewide programs of surveillance,
screening and diagnosis, prevention, and clinical
intervention, and support for individuals with FASD and
their families under section 399H(d); and
``(C) Indian Tribes and Tribal organizations in
engaging in tribal consultation to ensure that such
Tribes and Tribal organizations are able to develop
culturally-appropriate services and interventions for
individuals with FASD and other conditions related to
prenatal substance exposure and their families.
``(5) Other functions.--Carrying out other functions, to
the extent authorized by the Secretary, after consideration of
recommendations of the National Advisory Council on FASD.
``(c) Application.--To be eligible for a grant, contract, or
cooperative agreement under this section, an entity shall submit to the
Secretary an application at such time, in such manner, and containing
such information as the Secretary may require, including specific
credentials relating to FASD expertise and experience relevant to the
application's proposed activity, including development of FASD public
awareness activities and resources; FASD resource development,
dissemination, and training; coordination of FASD-informed services,
technical assistance, administration of FASD partner networks, and
other FASD-specific expertise.
``(d) Subcontracting.--A public or private nonprofit may carry out
the activities under subsection (a) through contracts or cooperative
agreements with other public and private nonprofit entities with
demonstrated expertise in--
``(1) FASD prevention activities;
``(2) FASD screening and identification;
``(3) FASD resource, development, dissemination, training
and technical assistance, administration and support of FASD
partner networks; and
``(4) intervention services.
``(e) Authorization of Appropriations.--There is authorized to be
appropriated to carry out this section $8,000,000 for each of fiscal
years 2022 through 2027.''.
SEC. 7. DEPARTMENT OF EDUCATION AND DEPARTMENT OF JUSTICE PROGRAMS.
(a) Prevention, Identification, Intervention, and Services in the
Education System.--
(1) General rule.--The Secretary of Education shall address
education-related issues with respect to children with FASD, in
accordance with this subsection.
(2) Specific responsibilities.--The Secretary of Education
shall direct the Office of Special Education and Rehabilitative
Services to--
(A) support the development, collection, and
dissemination (through the internet website of the
Department of Education, at teacher-to-teacher
workshops, through in-service trainings, and through
other means) of culturally appropriate best practices
that are FASD-informed in the education and support of
children with FASD (including any special techniques on
how to assist these children in both special and
traditional educational settings, and including such
practices that incorporate information concerning the
identification, behavioral supports, teaching, and
learning associated with FASD) 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, the National
Association of Secondary School Principals and
national groups of special education teachers;
(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 parent education organizations;
(B) 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 FASD
have the right to access general curriculum under the
least restrictive environment;
(C) collaborate with other Federal agencies to
include information or activities relating to prenatal
alcohol and other harmful substance exposure in
programs related to maternal health and health
education; and
(D) support efforts by peer advisory networks of
adolescents in schools to discourage the use of alcohol
and other harmful substances while pregnant or when
considering getting pregnant.
(3) Definition.--For purposes of this subsection, the term
``FASD'' has the meaning given such term in section 399H(a) of
the Public Health Service Act, as added by section 3.
(4) Authorization of appropriations.--There are authorized
to be appropriated to carry out this subsection $5,000,000 for
each of fiscal years 2022 through 2027.
(b) Prevention, Identification, Intervention and Services in the
Justice System.--
(1) In general.--The Attorney General shall address
justice-related issues with respect to youth and adults with
FASD and other neurodevelopmental conditions as a result of
prenatal substance exposure, in accordance with this
subsection.
(2) Requirements.--The Attorney General, acting through the
Office of Juvenile Justice and Delinquency Prevention and the
Bureau of Justice Initiatives, shall--
(A) develop screening and assessment procedures and
conduct trainings on demonstration FASD surveillance
projects in adult and juvenile correction facilities in
collaboration with the National Center on Birth Defects
and Developmental Disabilities and assistance from
appropriate medical and mental health professionals;
(B) provide culturally appropriate support and
technical assistance to justice systems professionals
in developing training curricula on how to most
effectively identify and interact with individuals with
FASD or similar neurodevelopmental disorders in the
adult and juvenile justice systems, and such support
may include providing information about the prevention,
assessment, identification and treatment of these
disorders into justice professionals' credentialing or
continuing education requirements;
(C) provide culturally appropriate technical
assistance to adult and juvenile systems in addressing
the integration of prenatal alcohol and substance
exposure history into existing validated screening and
assessment instruments;
(D) provide culturally appropriate technical
assistance and support on the education of justice
system professionals, including judges, attorneys,
probation officers, child advocates, law enforcement
officers, prison wardens and other incarceration
officials, medical and mental health professionals, and
administrators of developmental disability, mental
health and alternative incarceration facilities on how
to screen, assess, identify, treat, respond and support
individuals with FASD and other conditions as a result
of substance exposure within the justice systems,
including--
(i) programs designed specifically for the
identification, assessment, treatment, and
education of those with FASD;
(ii) curricula development and
credentialing of teachers, administrators, and
social workers who implement such programs; and
(iii) how FASD and other neurodevelopmental
disorders impact an individual's interaction
with law enforcement and whether diversionary
sentencing options are more appropriate for
such individuals;
(E) conduct a study on the practices and procedures
within the criminal justice system for identifying and
treatment of juvenile and adult offenders with
neurodevelopmental disabilities, such as FASD, the
impact of FASD on offenders' cognitive skills and
adaptive functioning, and identify alternative
culturally appropriate methods of treatment and
incarceration that have been demonstrated to be more
effective for such offenders; and
(F) collaborate with professionals with FASD
expertise and implement FASD-informed transition
programs for adults and juveniles with FASD who are
released from adult and juvenile correctional
facilities.
(3) Access for bop inmates.--The Attorney General shall
direct the Reentry Services Division at the Bureau of Prisons
to ensure that each inmate with FASD or a similar
neurodevelopmental disorder who is in the custody of the Bureau
of Prisons have access to FASD-informed culturally appropriate
services upon re-entry, including programs, resources, and
activities for adults with FASD, to facilitate the successful
reintegration into their communities upon release.
(4) Authorization of appropriations.--For the purpose of
carrying out this subsection, there are authorized to be
appropriated $2,000,000 for each of fiscal years 2022 through
2027.
(c) Definition.--For purposes of this section, the term ``FASD''
has the meaning given such term in section 399H(a) of the Public Health
Service Act, as amended by section 3.
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