[Congressional Record Volume 144, Number 37 (Friday, March 27, 1998)]
[Senate]
[Pages S2720-S2722]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. DASCHLE:
  S. 1875. A bill to initiate a coordinated national effort to prevent, 
detect, and educate the public concerning Fetal Alcohol Syndrome and 
Fetal Alcohol Effect and to identify effective

[[Page S2721]]

interventions for children, adolescents, and adults with Fetal Alcohol 
Syndrome and Fetal Alcohol Effect, and for other purposes; to the 
Committee on Labor and Human Resources.


  The Fetal Alcohol Syndrome and Fetal Alcohol Effect Prevention and 
                              Services Act

  Mr. DASCHLE. Mr. President, in numerous ways, this nation 
demonstrates that our children are our most valuable investment and our 
most precious asset. We work to improve their education, to give them 
greater access to high quality health care, to minimize their exposure 
to tobacco and other addictive agents. We are driven to do all we can 
to help them realize their potential and achieve their personal and 
professional goals.
  In that context, it is inconsistent and shortsighted that, year after 
year, we pay little or no attention to a public health problem that is 
100 percent preventable, yet affects more and more children each year, 
and that inalterably damages physical, mental and emotional processes 
critical to a child's ability to grow into an independent, fully 
functioning adult. The public health problem I am referring to is fetal 
alcohol syndrome. Fetal alcohol syndrome (FAS) and the related 
condition, fetal alcohol effect (FAE), are lifelong conditions 
characterized by multiple physical, mental, and behavioral handicaps. 
FAS and FAE cross racial, ethnic and economic lines to affect families 
throughout the United States. Both conditions are 100 percent 
preventable--and 100 percent irreversible.
  In January of 1997, I introduced S.148, a bill to establish a program 
for the prevention of FAS and FAE. S.148 calls for the development of 
an interagency task force at the federal level to promote prevention 
and detection of FAS and FAE, as well as a grant program to help 
communities expand public awareness and prevention at the state and 
local levels.
  I introduced bills similar to S.148 in the 102nd, 103rd and 104th 
Congresses, but, as is too often the case, these measures were too 
modest in scope to compete against ``the issue of the moment.'' Seven 
years is a long time to push a bill, but I don't see this effort as a 
matter of choice so much as a matter of necessity. It is a crime to sit 
back while more and more women each year drink during pregnancy and 
more and more children each year are handicapped for life because of 
it.
  In fact, the more I have learned about these conditions and their 
impact on children and their families, the more apparent it is to me 
that, if we truly care about children, we must not only embrace the 
goals of S.148, we must go beyond them. Not only should we do all we 
can to protect more children from a life sentence of devastating 
handicaps, we should acknowledge that for many children, prevention 
comes too late.
  We must open our eyes to the fact that FAS and FAE children and their 
families often have nowhere to turn for information, guidance and the 
social services necessary to respond to their special needs.Up to 
12,000 children with FAS are born each year in the United States. 
According to some estimates, the rate of FAE is 3 times that.
  The incidence of FAS is nearly double that of Down's syndrome and 
almost 5 times that of spinal bifida. The incidence of FAS may be as 
high as one per 100 in some Native American communities.
  FAS and FAE are characterized by a complicated and debilitating array 
of mental, physical, and behavioral problems. FAS is the leading cause 
of mental retardation, and, let me repeat, it is 100 percent 
preventable.
  But rather than setting our sites on decreasing the incidence of FAS 
and FAE, the nation is witnessing a rapid increase in its incidence. In 
1995, the Centers for Disease Control reported a six-fold increase in 
the percentage of babies born with FAS over the preceding 15 years. 
Again according to the CDC, rates of alcohol use during pregnancy 
increased significantly between 1991 and 1995, especially the rates of 
``frequent drinking.''
  This trend defies the Surgeon General's warning against drinking 
while pregnant. It defies a strongly worded advisory issued in 1991 by 
the American Medical Association urging women to abstain from all 
alcohol during pregnancy. Clearly, we need to do more to discourage 
women from risking their children's future by drinking while pregnant.
  In addition to the tragic consequences for thousands of children and 
their families, these disturbing trends have immense implications from 
a fiscal perspective. The costs associated with caring for individuals 
with FAS and FAE are staggering.
  The Centers for Disease Control and Prevention estimates that the 
lifetime cost of treating an individual with FAS is almost $1.4 
million. The total cost in terms of health care and social services to 
treat all Americans with FAS was estimated at $2.7 billion in 1995. 
This is an extraordinary and unnecessary expense.
  To the extent we can prevent FAS and FAE and help parents respond 
appropriately to the special needs of their children, we can reduce 
institutionalizations, incarcerations and the continual use of medical 
and mental health services that otherwise may be inevitable. It makes 
fiscal sense, but far more importantly, it is the humane thing to do.
  The bill I am introducing today will establish a national task force 
comprised of parents, educators, researchers and representatives from 
relevant federal, state and local agencies. That task force will take 
on a difficult and critically important task. It will be responsible 
for reporting to Congress on FAS and FAE--on the nature and scope of 
the problem, the current response at the federal, state and local 
levels, and on ways the federal government can help states and 
localities make further progress. In conjunction with the task force 
efforts, the Secretary would establish a competitive grants program. 
This program would provide the resources necessary to operationalize 
the task force recommendations.
  The concept of a national task force with membership from outside of, 
as well as within, the federal government make sense for FAS and FAE, 
because the true experts on these conditions are the parents and 
professionals who deal with the cause and effects of these conditions 
day in and day out. If we want to respond appropriately, parents, 
teachers, social workers, and researchers should have a place at the 
table. A national task force will also provide the opportunity for 
communities to share best practices, preventing states that are newer 
to this problem from having to ``reinvent the wheel.''
  Mr. President, responding to the tragedy of alcohol-related birth 
defects is an urgent cause. I would like to thank the many concerned 
parents, researchers, educators, and federal agencies who helped 
develop this bill. Their input has produced what I believe is a solid 
response to the challenge and obligation before us. I urge my 
colleagues from both sides of the aisle to join me in an effort that 
can save children from a legacy of unnecessary and overwhelming 
handicaps, and help those for whom prevention is too late to live 
independent, fulfilling lives. I believe that if they look at this 
issue closely, they will agree that it would be a crime to do any less.
  Mr. President, I ask unanimous consent that the text of the bill be 
printed in the Record.
  There being no objection, the bill was ordered to be printed in the 
Record, as follows:

                                S. 1875

       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 ``Fetal Alcohol Syndrome and 
     Fetal Alcohol Effect Prevention and Services Act''.

     SEC. 2. FINDINGS.

       Congress finds that--
       (1) Fetal Alcohol Syndrome is the leading known cause of 
     mental retardation, and it is 100 percent preventable;
       (2) each year, up to 12,000 infants are born in the United 
     States with Fetal Alcohol Syndrome, suffering irreversible 
     physical and mental damage;
       (3) thousands more infants are born each year with Fetal 
     Alcohol Effect, also known as Alcohol Related Neurobehavioral 
     Disorder (ARND), a related and equally tragic syndrome;
       (4) children of women who use alcohol while pregnant have a 
     significantly higher infant mortality rate (13.3 per 1000) 
     than children of those women who do not use alcohol (8.6 per 
     1000);
       (5) Fetal Alcohol Syndrome and Fetal Alcohol Effect are 
     national problems which can impact any child, family, or 
     community, but their threat to American Indians and Alaska 
     Natives is especially alarming;

[[Page S2722]]

       (6) in some American Indian communities, where alcohol 
     dependency rates reach 50 percent and above, the chances of a 
     newborn suffering Fetal Alcohol Syndrome or Fetal Alcohol 
     Effect are up to 30 times greater than national averages;
       (7) in addition to the immeasurable toll on children and 
     their families, Fetal Alcohol Syndrome and Fetal Alcohol 
     Effect pose extraordinary financial costs to the Nation, 
     including the costs of health care, education, foster care, 
     job training, and general support services for affected 
     individuals;
       (8) the total cost to the economy of Fetal Alcohol Syndrome 
     was approximately $2,500,000,000 in 1995, and over a 
     lifetime, health care costs for one Fetal Alcohol Syndrome 
     child are estimated to be at least $1,400,000;
       (9) researchers have determined that the possibility of 
     giving birth to a baby with Fetal Alcohol Syndrome or Fetal 
     Alcohol Effect increases in proportion to the amount and 
     frequency of alcohol consumed by a pregnant woman, and that 
     stopping alcohol consumption at any point in the pregnancy 
     reduces the emotional, physical, and mental consequences of 
     alcohol exposure to the baby; and
       (10) though approximately 1 out of every 5 pregnant women 
     drink alcohol during their pregnancy, we know of no safe dose 
     of alcohol during pregnancy, or of any safe time to drink 
     during pregnancy, thus, it is in the best interest of the 
     Nation for the Federal Government to take an active role in 
     encouraging all women to abstain from alcohol consumption 
     during pregnancy.

     SEC. 3. PURPOSE.

       It is the purpose of this Act to establish, within the 
     Department of Health and Human Services, a comprehensive 
     program to help prevent Fetal Alcohol Syndrome and Fetal 
     Alcohol Effect nationwide and to provide effective 
     intervention programs and services for children, adolescents 
     and adults already affected by these conditions. Such program 
     shall--
       (1) coordinate, support, and conduct national, State, and 
     community-based public awareness, prevention, and education 
     programs on Fetal Alcohol Syndrome and Fetal Alcohol Effect;
       (2) coordinate, support, and conduct prevention and 
     intervention studies as well as epidemiologic research 
     concerning Fetal Alcohol Syndrome and Fetal Alcohol Effect;
       (3) coordinate, support and conduct research and 
     demonstration projects to develop effective developmental and 
     behavioral interventions and programs that foster effective 
     advocacy, educational and vocational training, appropriate 
     therapies, counseling, medical and mental health, and other 
     supportive services, as well as models that integrate or 
     coordinate such services, aimed at the unique challenges 
     facing individuals with Fetal Alcohol Syndrome or Fetal 
     Alcohol Effect and their families; and
       (4) foster coordination among all Federal, State and local 
     agencies, and promote partnerships between research 
     institutions and communities that conduct or support Fetal 
     Alcohol Syndrome and Fetal Alcohol Effect research, programs, 
     surveillance, prevention, and interventions and otherwise 
     meet the general needs of populations already affected or at 
     risk of being impacted by Fetal Alcohol Syndrome and Fetal 
     Alcohol Effect.

     SEC. 4. ESTABLISHMENT OF PROGRAM.

       Title III of the Public Health Service Act (42 U.S.C. 241 
     et seq.) is amended by adding at the end the following:

    ``PART O--FETAL ALCOHOL SYNDROME PREVENTION AND SERVICES PROGRAM

     ``SEC. 399G. ESTABLISHMENT OF FETAL ALCOHOL SYNDROME 
                   PREVENTION AND SERVICES PROGRAM.

       ``(a) Fetal Alcohol Syndrome Prevention, Intervention and 
     Services Delivery Program.--The Secretary shall establish a 
     comprehensive Fetal Alcohol Syndrome and Fetal Alcohol Effect 
     prevention, intervention and services delivery program that 
     shall include--
       ``(1) an education and public awareness program to support, 
     conduct, and evaluate the effectiveness of--
       ``(A) educational programs targeting medical schools, 
     social and other supportive services, educators and 
     counselors and other service providers in all phases of 
     childhood development, and other relevant service providers, 
     concerning the prevention, identification, and provision of 
     services for children, adolescents and adults with Fetal 
     Alcohol Syndrome and Fetal Alcohol Effect;
       ``(B) strategies to educate school-age children, including 
     pregnant and high risk youth, concerning Fetal Alcohol 
     Syndrome and Fetal Alcohol Effect;
       ``(C) public and community awareness programs concerning 
     Fetal Alcohol Syndrome and Fetal Alcohol Effect; and
       ``(D) strategies to coordinate information and services 
     across affected community agencies, including agencies 
     providing social services such as foster care, adoption, and 
     social work, medical and mental health services, and agencies 
     involved in education, vocational training and civil and 
     criminal justice;
       ``(2) a prevention and diagnosis program to support 
     clinical studies, demonstrations and other research as 
     appropriate to--
       ``(A) develop appropriate medical diagnostic methods for 
     identifying Fetal Alcohol Syndrome and Fetal Alcohol Effect; 
     and
       ``(B) develop effective prevention services and 
     interventions for pregnant, alcohol-dependent women; and
       ``(3) an applied research program concerning intervention 
     and prevention to support and conduct service demonstration 
     projects, clinical studies and other research models 
     providing advocacy, educational and vocational training, 
     counseling, medical and mental health, and other supportive 
     services, as well as models that integrate and coordinate 
     such services, that are aimed at the unique challenges facing 
     individuals with Fetal Alcohol Syndrome or Fetal Alcohol 
     Effect and their families.
       ``(b) Grants and Technical Assistance.--The Secretary may 
     award grants, cooperative agreements and contracts and 
     provide technical assistance to eligible entities described 
     in section 399H to carry out subsection (a).
       ``(c) Dissemination of Criteria.--In carrying out this 
     section, the Secretary shall develop a procedure for 
     disseminating the Fetal Alcohol Syndrome and Fetal Alcohol 
     Effect diagnostic criteria developed pursuant to section 705 
     of the ADAMHA Reorganization Act (42 U.S.C. 485n note) to 
     health care providers, educators, social workers, child 
     welfare workers, and other individuals.
       ``(d) National Task Force.--
       ``(1) In general.--The Secretary shall establish a task 
     force to be known as the National task force on Fetal Alcohol 
     Syndrome and Fetal Alcohol Effect (referred to in this 
     subsection as the `task force') to foster coordination among 
     all governmental agencies, academic bodies and community 
     groups that conduct or support Fetal Alcohol Syndrome and 
     Fetal Alcohol Effect research, programs, and surveillance, 
     and otherwise meet the general needs of populations actually 
     or potentially impacted by Fetal Alcohol Syndrome and Fetal 
     Alcohol Effect.
       ``(2) Membership.--The Task Force established pursuant to 
     paragraph (1) shall--
       ``(A) be chaired by an individual to be appointed by the 
     Secretary and staffed by the Administration; and
       ``(B) include the Chairperson of the Interagency 
     Coordinating Committee on Fetal Alcohol Syndrome of the 
     Department of Health and Human Services, and representatives 
     from research and advocacy organizations such as the Research 
     Society on Alcoholism, the FAS Family Resource Institute and 
     the National Organization of Fetal Alcohol Syndrome, the 
     academic community, and Federal, State and local government 
     agencies and offices.
       ``(3) Functions.--The Task Force shall--
       ``(A) advise Federal, State and local programs and research 
     concerning Fetal Alcohol Syndrome and Fetal Alcohol Effect, 
     including programs and research concerning education and 
     public awareness for relevant service providers, school-age 
     children, women at-risk, and the general public, medical 
     diagnosis, interventions for women at-risk of giving birth to 
     children with Fetal Alcohol Syndrome and Fetal Alcohol 
     Effect, and beneficial services for individuals with Fetal 
     Alcohol Syndrome and Fetal Alcohol Effect and their families;
       ``(B) coordinate its efforts with the Interagency 
     Coordinating Committee on Fetal Alcohol Syndrome of the 
     Department of Health and Human Services; and
       ``(C) report on a biennial basis to the Secretary and 
     relevant committees of Congress on the current and planned 
     activities of the participating agencies.
       ``(4) Time for appointment.--The members of the Task Force 
     shall be appointed by the Secretary not later than 6 months 
     after the date of enactment of this part.

     ``SEC. 399H. ELIGIBILITY.

       ``To be eligible to receive a grant, or enter into a 
     cooperative agreement or contract under this part, an entity 
     shall--
       ``(1) be a State, Indian tribal government, local 
     government, scientific or academic institution, or nonprofit 
     organization; and
       ``(2) prepare and submit to the Secretary an application at 
     such time, in such manner, and containing such information as 
     the Secretary may prescribe, including a description of the 
     activities that the entity intends to carry out using amounts 
     received under this part.

     ``SEC. 399I. AUTHORIZATION OF APPROPRIATIONS.

       ``(a) In General.--There are authorized to be appropriated 
     to carry out this part, $27,000,000 for each of the fiscal 
     years 1999 through 2003.
       ``(b) Task Force.--From amounts appropriate for a fiscal 
     year under subsection (a), the Secretary may use not to 
     exceed $2,000,000 of such amounts for the operations of the 
     National Task Force under section 399G(d).

     ``SEC. 399J. SUNSET PROVISION.

       ``This part shall not apply on the date that is 7 years 
     after the date on which all members of the national task 
     force have been appointed under section 399G(d)(1).''.
                                 ______