Advancing FASD Research, Prevention, and Services Act
A BILL
To amend the Public Health Service Act to reauthorize and extend the Fetal Alcohol Syndrome prevention and services program, and for other purposes.
Sec. 2 Findings
Sec. 3 Programs for fetal alcohol spectrum disorders
“(a) Research on FAS and related disorders
“(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 Syndrome, shall—
“(A) establish a research agenda for Fetal Alcohol Spectrum Disorders; 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, 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 Fetal Alcohol Spectrum Disorder diagnosis, intervention, and prevention;
“(B) factors that may mitigate the effects of fetal alcohol exposure; and
“(C) other research that the Director determines to be appropriate.
“(3) Authorization of appropriations—There are authorized to be appropriated to carry out this subsection, such sums as may be necessary for each of fiscal years 2014 through 2018.
“(b) 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, shall facilitate surveillance, public health research, and prevention of Fetal Alcohol Spectrum Disorders as provided for in this subsection.
“(2) Surveillance, public health research, and prevention—In carrying out this subsection, the Secretary shall—
“(A) integrate into clinical practice the standard case definition for diagnosis of Fetal Alcohol Syndrome and, in collaboration with the National Institute on Alcohol Abuse and Alcoholism, the Centers for Disease Control and Prevention, researchers, and experts in the field, develop a standard clinical case definition for diagnostic guidelines and criteria for prenatal alcohol-related conditions other than Fetal Alcohol Syndrome;
“(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 (A) to—
“(i) hospitals, federally qualified health centers, outpatient programs, and other appropriate health care providers;
“(ii) incarceration, detainment facilities, and other judicial systems for juveniles and adults;
“(iii) educational settings;
“(iv) social work and child welfare offices;
“(v) foster care providers and adoption agencies;
“(vi) State offices and others providing services to individuals with disabilities;
“(vii) alcoholism treatment facilities; and
“(viii) 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 child bearing age; and
“(E) disseminate and evaluate brief behavioral intervention strategies aimed at preventing alcohol-exposed pregnancies among women of childbearing age in special settings, including clinical primary health centers, outpatient clinics, and jail and recovery campuses.
“(3) Authorization of appropriations—There are authorized to be appropriated to carry out this subsection, such sums as may be necessary for each of fiscal years 2014 through 2018.
“(c) Building State FASD systems
“(1) In general—The Secretary, acting through the Administrator of the Substance Abuse and Mental Health Services Administration, shall award grants, contracts, or cooperative agreements to States for the purpose of establishing or expanding statewide programs of surveillance, prevention, and clinical intervention for individuals with Fetal Alcohol Spectrum Disorders.
“(2) Eligibility—To be eligible to receive a grant, contract, or cooperative agreement under paragraph (1) a State shall—
“(A) prepare and submit to the Secretary an application at such time, in such manner, and containing such information as the Secretary may reasonably require;
“(B) develop and implement a statewide strategic plan for preventing Fetal Alcohol Spectrum Disorders and clinical intervention for individuals with Fetal Alcohol Spectrum Disorders;
“(C) consult with public and private non-profit entities with relevant expertise on Fetal Alcohol Spectrum Disorders within the State, including—
“(i) parent-led groups and other organizations that support and advocate for individuals with Fetal Alcohol Spectrum Disorders; and
“(ii) Indian tribes and tribal organizations; and
“(D) designate an individual to serve as the coordinator of the State's Fetal Alcohol Spectrum Disorders program.
“(3) Strategic plan—The statewide strategic plan prepared under paragraph (2)(B) shall include—
“(A) the identification of existing State programs and systems that could be used to identify and assist individuals with Fetal Alcohol Spectrum Disorders and prevent alcohol consumption during pregnancy, such as—
“(i) programs for the developmentally disabled, the mentally ill, and individuals with alcohol dependency;
“(ii) educational settings;
“(iii) incarceration, detention centers, and judicial systems for juveniles and adults;
“(iv) child welfare programs and social service programs; and
“(v) other programs or systems the State determines to be appropriate;
“(B) the identification of any barriers for individuals with Fetal Alcohol Spectrum Disorders or women at risk for alcohol consumption during pregnancy to access the programs identified under subparagraph (A); and
“(C) proposals to eliminate barriers to prevention and treatment programs and coordinate the activities of such programs.
“(4) Use of funds—Amounts received under a grant, contract, or cooperative agreement under paragraph (1) shall be used for 1 or more of the following activities:
“(A) Establishing a statewide surveillance system.
“(B) Collecting, analyzing, and interpreting data.
“(C) Establishing a diagnostic center.
“(D) Developing, implementing, and evaluating population-based and targeted prevention programs for Fetal Alcohol Spectrum Disorders, including public awareness campaigns.
“(E) Referring individuals with Fetal Alcohol Spectrum Disorders to appropriate support services.
“(F) Implementing recommendations from relevant agencies and organizations on the identification and prevention of Fetal Alcohol Spectrum Disorders, and clinical intervention for individuals with Fetal Alcohol Spectrum Disorders.
“(G) Providing training to health care providers on the prevention, identification, and treatment of Fetal Alcohol Spectrum Disorders.
“(H) Disseminating information about Fetal Alcohol Spectrum Disorders and the availability of support services to families of individuals with Fetal Alcohol Spectrum Disorders.
“(I) Other activities determined appropriate by the Secretary.
“(5) Multi-State programs—The Secretary shall permit the formation of multi-State Fetal Alcohol Spectrum Disorders programs under this subsection.
“(6) Other contracts and agreements—A State may carry out activities under paragraph (4) through contracts or cooperative agreements with public and private non-profit entities with a demonstrated expertise in Fetal Alcohol Spectrum Disorders.
“(7) Authorization of appropriations—There are authorized to be appropriated to carry out this subsection, such sums as may be necessary for fiscal years 2014 through 2018.
“(d) Promoting community partnerships
“(1) In general—The Secretary 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 Fetal Alcohol Spectrum Disorders, such as surveillance, prevention, treatment, and provision of 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, including—
“(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 systems for juveniles and adults;
“(v) a parent-led group or other organization that supports and advocates for individuals with Fetal Alcohol Spectrum Disorders;
“(vi) an Indian tribe or tribal organization;
“(vii) any other entity the Secretary determines to be appropriate; or
“(viii) a consortium of any of the entities described in clauses (i) through (vii); and
“(B) 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 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 Fetal Alcohol Spectrum Disorders.
“(3) Activities—An eligible entity shall use amounts received under a grant, contract, or cooperative agreement under this subsection shall carry out 1 or more of the following activities:
“(A) Integrating Fetal Alcohol Spectrum Disorders 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, diagnose, treat, and provide support services to individuals with Fetal Alcohol Spectrum Disorders.
“(D) Disseminating information about Fetal Alcohol Spectrum Disorders 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 Fetal Alcohol Spectrum Disorders.
“(G) Other activities determined appropriate by the Secretary.
“(4) Authorization of appropriations—There are authorized to be appropriated to carry out this subsection, such sums as may be necessary for each of fiscal years 2014 through 2018.
“(e) Development of best practices
“(1) In general—The Secretary, in coordination with the Administrator of the Substance Abuse and Mental Health Services Administration, shall award grants to States, Indian tribes and tribal organizations, and nongovernmental organizations for the establishment of pilot projects to identify and implement best practices for—
“(A) educating children with fetal alcohol spectrum disorders, 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;
“(B) educating judges, attorneys, probation officers, child advocates, law enforcement officers, prison wardens, alternative incarceration administrators, and incarceration officials on how to treat and support individuals suffering from Fetal Alcohol Spectrum Disorders within the criminal justice system, including—
“(i) programs designed specifically for the identification, treatment, and education of those with Fetal Alcohol Spectrum Disorders; and
“(ii) curricula development and credentialing within the justice system for individuals who implement such programs; and
“(C) educating adoption or foster care agency officials about available and necessary services for children with Fetal Alcohol Spectrum Disorders, including—
“(i) programs designed specifically for the identification, treatment, and education of those with Fetal Alcohol Spectrum Disorders; and
“(ii) education and training for potential parents of an adopted child with Fetal Alcohol Spectrum Disorders.
“(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.
“(3) Authorization of appropriations—There are authorized to be appropriated to carry out this subsection, such sums as may be necessary for each of fiscal years 2014 through 2018.
“(f) Transitional services
“(1) In general—The Secretary 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 those affected by prenatal alcohol exposure and evaluating their effectiveness.
“(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 Fetal Alcohol Spectrum Disorders.
“(3) Allowable uses—An entity shall use amounts received under a grant, contract, or cooperative agreement under paragraph (1) to—
“(A) provide housing assistance to, or specialized housing for, adults with Fetal Alcohol Spectrum Disorders;
“(B) provide vocational training and placement services for adults with Fetal Alcohol Spectrum Disorders;
“(C) provide medication monitoring services for adults with Fetal Alcohol Spectrum Disorders;
“(D) provide training and support to organizations providing family services or mental health programs and other organizations that work with adults with Fetal Alcohol Spectrum Disorders; and
“(E) establish and evaluate housing models specially designed for adults with Fetal Alcohol Spectrum Disorders.
“(4) Authorization of appropriations—There are authorized to be appropriated to carry out this subsection, such sums as may be necessary for each of fiscal years 2014 through 2018.
“(g) Federally qualified health center initiative
“(1) In general—The Secretary, acting through the Administrator of the Health Resources and Services Administration, shall award grants to federally qualified health centers acting in collaboration with States, Indian tribes, tribal organizations, and nongovernmental organizations, for the establishment of a 5-year demonstration program to implement and evaluate a program to increase the awareness and identification of Fetal Alcohol Spectrum Disorders in federally qualified health centers and to refer affected individuals to appropriate support services.
“(2) Application—To be eligible to receive a grant under paragraph (1), a federally qualified health center, or a State, Indian tribe, tribal organization, or nongovernment organization with a demonstrated record of implementing Fetal Alcohol Spectrum Disorders programming in federally qualified health centers, shall prepare and submit to the Administrator an application at such time, in such manner, and containing such information as the Administrator may reasonably require.
“(3) Activities—A federally qualified health center, or other eligible entity, shall use amounts received under a grant under paragraph (1) to—
“(A) provide training for health care providers on identifying and educating women who are at risk for alcohol consumption during pregnancy;
“(B) provide training for health care providers on screening children for Fetal Alcohol Spectrum Disorders;
“(C) educate health care providers and other relevant federally qualified health center workers on the support services available for those with Fetal Alcohol Spectrum Disorders and treatment services available for women at risk for alcohol consumption during pregnancy; and
“(D) implement a tracking system that can identify the rates of Fetal Alcohol Spectrum Disorders by racial, ethnic, and economic backgrounds.
“(4) Selection of participants—The Administrator shall determine the number of federally qualified health centers that will participate in the demonstration program under this subsection and shall select participants, to the extent practicable, that are located in different regions of the United States and that serve a racially and ethnically diverse population.
“(5) Authorization of appropriations—There are authorized to be appropriated to carry out this subsection, such sums as may be necessary for each of fiscal years 2014 through 2018.
“(6) Report to congress—Not later than 1 year after completion of the demonstration program under this subsection, the Administrator shall prepare and submit to Congress a report on the results of the demonstration program, including—
“(A) changes in the number of women screened for and identified as at risk for alcohol consumption during pregnancy;
“(B) changes in the number of individuals identified as having a Fetal Alcohol Spectrum Disorder; and
“(C) changes in the number of alcohol-consuming pregnant women and individuals with Fetal Alcohol Spectrum Disorders who were referred to appropriate services.”
“(E) national public service announcements to raise public awareness of the risks associated with alcohol consumption during pregnancy with the purpose of reducing the prevalence of Fetal Alcohol Spectrum Disorders, that shall—
“(i) be developed, conducted, and evaluated prior to broadcast by relevant Federal agencies with the advice of the Interagency Coordinating Committee on Fetal Alcohol Syndrome taking into consideration the expertise and experience of other relevant Federal agencies;
“(ii) be broadcast through appropriate media outlets, including the Internet, television or radio, in a manner intended to reach women at risk of alcohol consumption during pregnancy; and
“(iii) be measured prior to broadcast of the national public service announcements to provide baseline data that will be used to evaluate the effectiveness of the announcements.”
“(D) explore the feasibility of whether Fetal Alcohol Syndrome and other prenatal alcohol disorders, or a subset of these disorders, should be included in the Diagnostic and Statistic Manual of Mental Disorders; and
“(E) in collaboration with the National Institute on Alcohol Abuse and Alcoholism, the Centers for Disease Control and Prevention, researchers, and experts in the field, develop a standard clinical case definition for diagnostic guideline and criteria for prenatal alcohol-related conditions other than Fetal Alcohol Syndrome.”
Sec. 4 Coordination among Federal entities
“399K–1. Coordination among Federal entities
“(a) Interagency Coordinating Committee on Fetal Alcohol Syndrome—The Secretary, acting through the Director of the National Institute on Alcohol Abuse and Alcoholism, shall provide for the continuation of the Interagency Coordinating Committee on Fetal Alcohol Syndrome so that such Committee may—
“(1) coordinate activities conducted by the Federal Government on Fetal Alcohol Spectrum Disorders, including convening meetings, establishing work groups, sharing information, and facilitating and promoting collaborative projects among Federal agencies; and
“(2) develop, in consultation with the National Task Force on Fetal Alcohol Spectrum Disorders, priority areas for years 2013 through 2017 to guide Federal programs and activities related to Fetal Alcohol Spectrum Disorders.
“(b) Coordination among Federal entities
“(1) In general—The Comptroller General of the United States shall evaluate and make recommendations regarding the appropriate roles and responsibilities of Federal entities with respect to programs and activities related to Fetal Alcohol Spectrum Disorders.
“(2) Covered entities—The Federal entities under paragraph (1) shall include entities within the National Institutes of Health, the Centers for Disease Control and Prevention, the Substance Abuse and Mental Health Services Administration, the Health Resources and Services Administration, the Indian Health Service, the Agency for Healthcare Research and Quality, the Interagency Coordinating Committee on Fetal Alcohol Syndrome, the National Task Force on Fetal Alcohol Spectrum Disorders, as well as the Office of Special Education and Rehabilitative Services in the Department of Education and the Office of Juvenile Justice and Delinquency Prevention in the Department of Justice.
“(3) Evaluation—The evaluation conducted by the Comptroller General under paragraph (1) shall include—
“(A) an assessment of the current roles and responsibilities of Federal entities with programs and activities related to Fetal Alcohol Spectrum Disorders; and
“(B) an assessment of whether there is duplication in programs and activities, conflicting roles and responsibilities, or lack of coordination among Federal entities.
“(4) Recommendation—The Comptroller General shall provide recommendations on the appropriate roles and responsibilities of the Federal entities described in paragraph (2) in order to maximize the effectiveness of Federal programs and activities related to Fetal Alcohol Spectrum Disorders.
“(5) Completion—Not later than 1 year after the date of enactment of the Advancing FASD Research, Prevention, and Services Act, the Comptroller General shall complete the evaluation and submit to Congress a report on the findings and recommendations made as a result of the evaluation.”
Sec. 5 Services for individuals with Fetal Alcohol Spectrum 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”