Report to the President 

The Promise of Research and 

Prevention 

2008
The President

The White House

Washington, D.C. 20500 

Dear Mr. President:

I forward for your consideration the President’s Committee for People with Intellectual 

Disabilities’ 2008 Report to the President: The Promise of Research and Prevention. 

This report addresses two issues of vital importance to preventing and ameliorating the 

effects of intellectual disabilities: speeding the discovery of cutting edge treatments and 

services through translational research and research consortiums, and defeating the 

single most preventable cause of intellectual disabilities—fetal alcohol spectrum 

disorders (FASD). 

The members of the President’s Committee applaud and embrace the goals in the New 

Freedom Initiative (NFI) and believe that through implementation of the 

recommendations contained in the report, people with intellectual disabilities will be 

better able to participate in their communities. 

It should be noted that although some of the information and data contained in this 

report were contributed by authorities in the fields of disability, research and fetal 

alcohol spectrum disorders, the personal opinions that such contributors may hold or 

choose to express outside of this report do not necessarily reflect the views of the 

President’s Committee for People with Intellectual Disabilities, the United States 

Department of Health and Human Services, or other Federal Government agencies.

 Sincerely,

 Michael O. Leavitt
The President

The White House

Washington, DC 20500 

Dear Mr. President: 

On behalf of the President’s Committee for People with Intellectual Disabilities (PCPID), I wish 

to express appreciation for the honor of serving your Administration and the American people. 

The members of the President’s Committee are committed to the fulfillment of the Committee’s 

mission to improve the quality of life of people with intellectual disabilities and their families. 

For many of us, it is a personal relationship with an individual with intellectual disabilities that 

inspires our dedication to the Committee and its important work. 

In discussing the prospective topics for the 2008 Report to the President, the Committee was 

particularly struck with two distinct, yet interrelated topics: research and prevention. In the area 

of research, the Committee recognized that while much research is being conducted in both the 

public and private sectors with regards to intellectual disabilities, much of the benefit from 

these significant investments is lost when the results do not reach beyond the laboratory setting 

and into clinical practice where it can result in improved health care and services. With regards 

to prevention, the Committee recognized the awesome potential for improved life and health 

outcomes by defeating the single most preventable cause of intellectual disabilities: fetal alcohol 

spectrum disorders (FASD). We are pleased to share with you the results of our exploration of 

these two vital areas of concern. 

Mr. President, the members of the President’s Committee for People with Intellectual 

Disabilities appreciate the opportunity to submit for your consideration, Report to the President:

The Promise of Research and Prevention. The intended outcome of this report is to promote further 

understanding of the inherent value of people with intellectual disabilities and the potential for 

improved life and health outcomes through the realization of the recommendations outlined 

herein. We are hopeful that this report will facilitate the further realization of the Committee’s 

mission to improve the quality of life of people with intellectual disabilities and their family 

members.

Sincerely,

Dallas “Rob” Sweezy 

Chair
TABLE OF CONTENTS

Committee Profile .......................................................................................................... II

Executive Summary ...................................................................................................... III

Section 1: Translational Research: Getting the Best Return on Our Investments 

in People with Intellectual Disabilities ......................................................................... 1 

Section 2: Defeating the Single Most Preventable Cause of Intellectual 

Disabilities in the United States: Fetal Alcohol Spectrum Disorder ......................... 7

Conclusion ...................................................................................................................... 13

Appendix I ......................................................................................................................... i 

Appendix II .................................................................................................................... iii

Ackowledgements.......................................................................................................... iv

Citizen Members ............................................................................................................. v 

Ex Officio Members ....................................................................................................... vi

Staff ................................................................................................................................ viii
II

Committee Profile

Although there is no national census of the incidence and prevalence of intellectual 

disabilities, authorities in the field estimate that the number may be as high as two 

percent of the population, six million individuals. One in 10 families in the United 

States is directly affected by a person with intellectual disabilities. In order to ensure the 

right of a “decent, dignified place in society” for people with mental retardation 

(intellectual disabilities), President Lyndon B. Johnson established, in 1966, the 

Committee on Mental Retardation (PCMR), now the President’s Committee for People 

with Intellectual Disabilities (PCPID), to focus on this critical subject of national 

concern. 

Since that time, the President’s Committee has served in an advisory capacity to the 

President and the Secretary of Health and Human Services on a broad range of matters 

relating to persons with intellectual disabilities and the field of intellectual disabilities. 

Since its inception, the President’s Committee has led the charge to improve the lives of 

people with intellectual disabilities, most recently embracing the vision and supporting 

the plan that is at the heart of President George W. Bush’s New Freedom Initiative (NFI) 

to tear down barriers that prevent people with intellectual disabilities from enjoying a 

quality of life that promotes independence, self-determination, and full participation as 

productive members of society. The NFI includes, but is not limited to: increasing access 

through assistive and universally designed technology; expanding educational 

opportunities for youth with disabilities; and promoting full and lifelong access to all 

aspects of community life. 

The Committee consists of 21 citizen members appointed by the President and 13 ex 

officio heads of Federal Government departments and agencies designated by the 

President. The 13 ex officio members include: the Attorney General, Secretary of the 

Interior, Secretary of Commerce, Secretary of Labor, Secretary of Health and Human 

Services, Secretary of Housing and Urban Development, Secretary of Transportation, 

Secretary of Education, Secretary of Homeland Security, President and Chief Executive 

Officer of the Corporation for National and Community Service, Commissioner of the 

Social Security Administration, Chair of the Equal Employment Opportunity 

Commission, and Chair of the National Council on Disability. The President’s 

Committee for People with Intellectual Disabilities is led by an Executive Director, also 

appointed by the President, and supported by a team of Federal employees. 
III

Executive Summary

In fulfillment of the Executive Order to prepare an annual report to the President, the 

President’s Committee for People with Intellectual Disabilities submits its 2008 report, 

Report to the President: The Promise of Research and Prevention. 

Research

According to the Institute of Medicine report, Crossing the Quality Chasm: A New Health 

System for the 21st Century, the lag between scientific discovery and integration of those 

discoveries into practice is unnecessarily long – about 15 to 20 years. During this lag 

time, valuable opportunities are lost to improve the lives of individuals who could most 

benefit from the cutting edge discoveries that do not make it out of the laboratory 

setting and into clinical practice in a timely manner. 

In order to address the lag time from discovery to practice, the Committee recommends 

that the President urge the private sector to create condition-specific research and 

clinical consortiums aimed at improving communication and encouraging collaboration 

in the fields of intellectual disabilities. The Committee further recommends that, where 

appropriate, the President encourage the formation of public/private partnerships to 

ensure the most efficient use of government research and resources. 

Prevention

Fetal Alcohol Spectrum Disorder (FASD) is the single most preventable cause of 

intellectual disabilities and results from prenatal exposure to alcohol. Some of the 

primary and secondary disabilities associated with FASD include intellectual 

disabilities, adaptive functioning deficits, mental health problems, problems with the 

law, disrupted school experience and alcohol and drug problems. 

According to the Substance Abuse and Mental Health Services Administration, two 

effective means of preventing FASD include increasing public awareness of the 

potentially harmful effects of prenatal alcohol exposure, and targeting those at risk for 

engaging in high risk alcohol consumption while pregnant. The Committee 

recommends that the President urge the private sector to establish a research and 

clinical consortium on FASD, and instruct the appropriate Federal agencies to conduct 

research to obtain more accurate data regarding the incidence and prevalence of FASD 

in the United States. The Committee further recommends that the President promote 

the prevention of FASD through early education, increased screening and prevention in 

clinical settings, and renewed dedication to public awareness of FASD through Federal 

health initiatives such as Health People 2010 and Healthy People 2020. 
Section 1

Translational Research: Getting the Best Return on Our Investments in 

People with Intellectual Disabilities

Basic research is fundamental to improving the lives and health of people with 

intellectual disabilities. Research advances can improve health status, functional ability 

and quality of life. Better health outcomes lead to better life outcomes, including 

successful community integration and increased employability. 

The United States of America affirms its belief in the value of people with intellectual 

disabilities by investing in research. However, in order to maximize the return on this

investment we must also ensure that the results of the efforts in the laboratory reach the 

clinical and community level in a timely manner. Far too often, successful interventions 

and services that are based on rigorous clinical research remain unknown and untried 

rather than being used effectively in the community. The Institute on Medicine report, 

Crossing the Quality Chasm: A New Health System for the 21st Century, describes the lag 

between scientific discovery and integration into practice as unnecessarily long – about 

15 to 20 years.1 

Ideally, basic research discoveries are quickly translated into drugs, interventions, or 

methods of prevention. Such discoveries typically begin in the laboratory with basic 

research – where scientists study disease at a molecular or cellular level – then progress 

to clinical trials in humans and eventually to the community or service delivery level. 

Efforts to facilitate this continuum are called translational research. Translational 

research transforms scientific discoveries arising from laboratory studies into clinical 

applications that can be used to improve the lives of people with intellectual disabilities. 

In 1962, A Proposed Program for National Action to Combat Mental Retardation was 

submitted by the President’s Panel on Mental Retardation to President John F. Kennedy. 

The report states:

The phenomenal growth of research activity and consequent additions to 

knowledge that have taken place in the last 20 years have not been matched by 

significant innovations in the techniques of communication. The number of 

journals and other media now reporting the results of research make it impossible 

for investigators and practitioners to keep abreast of developments even within the 

spheres of their own immediate interest.2

 

1 Institute of Medicine, Committee on Quality of Health Care in America, Crossing the Quality Chasm: A 

New Health System for the 21st Century (Washington, DC: National Academy Press, 2001), 145. 

 

2 The President’s Panel on Mental Retardation, A Proposed Program for National Action to Combat Mental 

Retardation (Washington, DC 1962). 
2

This problem has never been more acute than it is today. The accelerated pace of 

discoveries in the life sciences has prompted a need for their more rapid translation into 

practice. Yet, even at a time when technology has made possible instant 

communication, the rate of new scientific discoveries has overwhelmed our current 

ability to communicate these discoveries effectively. 

Current approaches for bringing new scientific discoveries to the community level are 

often uncoordinated, inefficient, wasteful and sometimes counterproductive. Lag times 

in publication can be long and dissemination of research results incomplete. Data are 

sometimes unnecessarily duplicative because researchers are either not aware or do not 

have access to previous findings. Critical research gaps exist due to fragmented 

communication between investigators and clinicians. 

While the United States has one of the best discovery engines in the world, we often fail 

in moving discoveries from research to practice. As a result, valuable opportunities to 

have a positive impact on the lives of people with intellectual disabilities are lost. 

Despite significant Federal and private investments that have expanded the scientific 

knowledge base in intellectual disability and that have led to many effective biomedical 

and behavioral innovations, people with intellectual disabilities are not fully benefiting 

from the results of these efforts. 

In response to this shortfall, and the increasing importance of speedy access to state-ofthe-art treatments, members of the research community have built condition-specific 

consortiums aimed at creating a shared knowledge base of current research, clinical best 

practices and service delivery procedures and policies. 

The research and clinical consortium model is widely recognized as an advantageous 

structure to optimize and accelerate research progress and ultimately provide improved 

care. Consortiums integrate numerous disciplines, serve as a magnet for basic, 

translational and clinical research and bring together investigators, community 

clinicians, professional societies, industry and advocates. 

Research and Clinical Consortium Models

A number of collaborative models of varying scope and purpose exist in the intellectual 

disability research community. These consortiums were developed to create a shared 

knowledge base of effective interventions and to establish a structure for facilitating 

collaborative efforts. 

The examples below illustrate that research-based consortiums can be developed 

wholly in the private sector, the public sector, or through public/private partnerships. 

They represent varying missions and operating structures, and each demonstrates that 
3

increased collaboration and improved communication can accelerate the translation of 

basic research and improve the quality of life for the populations they serve. 

 The Fragile X Clinics and Research Consortium is sponsored by the National 

Fragile X Foundation. The consortium was developed in 2006 and now includes 

18 clinics nationwide. The consortium provides a communication network 

organized to provide evidence-based services, develop best practice guidelines 

and accelerate the process by which promising new interventions, including new 

medications, can be evaluated, approved and disseminated for individuals with 

Fragile X syndrome. 

 The National Institutes of Health (NIH) Down Syndrome Working Group was 

established in 2005 within the Eunice Kennedy Shriver National Institute of 

Child Health and Human Development (NICHD). The group, consisting of 

leading scientific staff from across NIH, was formed to share expertise and better 

coordinate ongoing NIH-supported research related to Down syndrome. They 

also foster collaborations between NIH and other agencies and groups 

representing the interests of individuals with Down syndrome and their families.

 The National Down Syndrome Society Research Coalition (DSRC) was launched 

in 2005 with a goal of increasing public and private funding of Down syndrome 

research. The coalition is comprised of institutions, researchers and parents with 

an interest in Down syndrome and aims to improve communication, 

coordination and collaboration among stakeholders.

 The Centers for Autism and Developmental Disabilities Research and 

Epidemiology (CADDRE) Network was established following passage of the 

Children’s Health Act of 2000. The Act directed the Centers for Disease Control 

& Prevention to establish regional centers of excellence for autism spectrum 

disorder and other developmental disabilities. Five research sites make up the 

CADDRE Network. 

 The University Centers for Excellence in Developmental Disabilities Education, 

Research and Service (UCEDD) were established by Congress in 1963 as centers 

of excellence for research in intellectual and developmental disabilities. They 

represent the nation's first and foremost sustained effort to prevent and treat 

disabilities through biomedical and behavioral research. UCEDDs evaluate the 

effectiveness of biological, biochemical, and behavioral interventions; develop 

assistive technologies; and advance prenatal diagnosis and newborn screening. 

The network consists of 67 UCEDDs.

 The Interagency Committee on Disability Research (ICDR), established by the 

Rehabilitation Act of 1973, is organized under the U.S. Department of Education. 
4

The Committee promotes coordination and cooperation among Federal 

departments and agencies conducting rehabilitation research programs. Its 

mission includes, but is not specific to intellectual disability. An annual report is 

submitted to the President on recommendations with respect to coordination of 

policy and the development of objectives and priorities for all Federal agencies 

related to disability and rehabilitation research. 

In addition to the examples above, several consortiums not specific to intellectual 

disabilities can serve as models for future collaborations. 

 The National Veterans Administration (VA) Parkinson’s Disease Consortium, 

sponsored by the VA Healthcare System, supports the provision of optimal care 

and education for veterans diagnosed with Parkinson’s disease and related 

movement disorders through professional education, collaboration and 

advocacy.

 The Multiple Myeloma Research Consortium, sponsored by the Multiple 

Myeloma Research Foundation, works to accelerate the development of cuttingedge treatments for patients afflicted by multiple myeloma by catalyzing, 

promoting and facilitating collaborative research between industry and 

academia. This bench to bedside research is solely directed to provide new and 

more effective treatments for multiple myeloma patients and fast forward 

progress toward the ultimate cure of myeloma. 

 The Child Care Policy Research Consortium, sponsored by the United States 

Department of Health and Human Services, Administration for Children and 

Families, Child Care Bureau, helps the Child Care Bureau increase national 

capacity for sound child care research, identify and respond to critical issues, and 

link child care research with policy and practice.

Benefits of Condition-Specific Consortiums

Research application has a critical role to play in promoting full access to community 

life for Americans with intellectual disabilities. 

The benefits of translational research can be measured in a number of areas including 

academics, personal skill-building, health and wellness, employment, independence, 

self-confidence and self-determination. For example, research in the neurosciences that 

promotes increased skills or improved function expands educational and employment 

possibilities. Research in pathophysiology that results in better symptom management 

or reduced co-morbidity leads to improved quality of life. 
5

 When the lag time between discovery and delivery is reduced, access to the most 

efficacious service and care models and potential for the best individual 

outcomes can occur.

 When research discoveries are routinely available at the community level, 

longstanding disparities in health, education and employment can begin to 

narrow. 

 When research findings are efficiently translated into practice, a knowledgeable 

and timely delivery network can apply the latest breakthroughs in medicine, 

behavioral intervention or education.

 When the gap closes between what is known and what is practiced, increasing 

possibilities can emerge for post-secondary education, employment and 

independent living. 

By establishing condition-specific research and clinical consortiums to work toward 

these milestones, we affirm the value of every person with an intellectual disability and 

demonstrate our commitment to improving their health and quality of life outcomes.

Recommendations

The President’s Committee recommends that the President encourage the private sector 

to establish condition-specific consortiums dedicated to the coordination of research 

and the cooperative dissemination of knowledge among researchers, professionals and 

public policy makers in the various fields of intellectual disabilities. Such consortiums 

should, at a minimum, focus on the following critical areas:

1. Identify and recruit the consortium membership—particularly clinics that 

specialize in, or provide services to, the condition-specific community

2. Develop and begin the implementation of consortium goals and objectives

3. Inform the community of parents and professionals

4. Enhance clinics’ services and coordination

5. Engage relevant researchers across multiple disciplines to coordinate research 

efforts 

6. Engage government institutions for implementation of translational Research 

and public health goals and objectives

The President’s Committee further encourages the President to promote, where 

appropriate, public/private partnerships to further the goals of the consortiums to 

accelerate the translation of basic research.
6

Establishing consortiums dedicated to the various conditions of intellectual disabilities 

will: 

 Provide leadership to bridge the gap between discovery and delivery

 Facilitate expansion of evidence-based practices in the field

 Encourage adoption of proven evidence-based interventions

 Promote application of research results to appropriate populations of people 

with intellectual disabilities

 Help translate research into practice within specific intellectual disability 

populations

 Encourage commonalities in research questions, methods and measurements

 Develop state of the art screening and intervention

 Identify neglected research issues

 Encourage information exchange among the research community

 Serve as a sounding board for current research ideas and methodological issues

 Discourage inefficient duplication of research efforts

 Facilitate cross-disciplinary collaborations

 Facilitate cross-organizational collaborations

 Facilitate public-private partnerships to test educational, behavioral, 

pharmaceutical or therapeutic interventions

 Recommend research priorities to governmental and non-governmental agencies 

with responsibilities for funding intellectual disability research

 Connect evolving needs of families and individuals with intellectual disabilities 

to ongoing research agendas

 Support communication between the research community and the larger 

community of families and organizations supporting the interests of people with 

intellectual disabilities

 Recommend best strategies for dissemination of new discoveries

 Identify potential diffusion and dissemination partners to aid decision-making 

for families, practitioners and policy-makers

 Promote dissemination of knowledge to researchers, public policy-makers and 

the intellectual disability community

 Augment the quality and productivity of the overall intellectual disability 

research enterprise 

Research consortiums can speed the discovery of cutting-edge research, treatments and 

services, and help to bring them to the community level in a timely manner. As a result, 

Americans with intellectual disabilities will be able to access the evidence-based best 

practices needed to improve their lives and health outcomes. 
7

Section 2

Defeating the Single Most Preventable Cause of Intellectual Disabilities 

in the United States: Fetal Alcohol Spectrum Disorders

FASD and the Effects of Prenatal Alcohol Exposure

Fetal alcohol spectrum disorders (FASD) result from prenatal exposure to alcohol 

through maternal alcohol consumption during pregnancy and include several 

conditions including fetal alcohol syndrome (FAS), fetal alcohol effects (FAE) and 

alcohol related birth defects (ARBD). The most severe end of this spectrum is fetal 

alcohol syndrome with nearly 50 percent of the FAS population experiencing 

intellectual disabilities.3

FASD is the leading known preventable cause of intellectual disabilities4 and is 

completely preventable. The only way a child will suffer from FASD is through prenatal 

exposure to alcohol. In other words, if a woman abstains from alcohol use during 

pregnancy, there is no possibility for her child to be born with FASD. 

According to the Institute of Medicine Report to Congress, “of all the substances of abuse, 

including heroin, cocaine, and marijuana, alcohol produces by far the most serious 

neurobehavioral effects in the fetus, resulting in life-long permanent disorders...”5

including intellectual disabilities, adaptive functioning deficits, growth failure, 

behavioral problems, and problems with impulse control and memory function. FASD 

“is a permanent, lifelong condition that affects every aspect of a child’s life and the lives 

of the child’s family.”6 

Individuals with FASD can also experience a broad range of secondary disabilities 

including mental health problems, trouble with the law, disrupted school experience, 

alcohol and drug problems, confinement (via incarceration, enrollment in drug and 

alcohol rehabilitation, or commitment to a mental health facility), inappropriate sexual 

 

3 Committee To Study Fetal Alcohol Syndrome, Division of Biobehavioral Sciences and Mental Disorders, 

Institute of Medicine, Fetal alcohol syndrome: Diagnosis, Epidemiology, Prevention, and Treatment, eds. 

Kathleen Stratton, Cynthia Howe and Frederick Battaglia, (Washington, DC: National Academy Press, 

1996).

4 Kennedy Krieger Institute, “Fetal Alcohol Syndrome and Related Disorders,” Kennedy Krieger Institute, 

http://www.kennedykrieger.org/kki_diag.jsp?pid=1085, Accessed May 12, 2008. 

5 CALFAS, “Basic Facts About Fetal Alcohol Spectrum Disorder (FASD) and Fetal Alcohol Syndrome,” 

California Fetal Alcohol Spectrum Organizations, http://www.calfas.org/fasdfacts.htm, Accessed March 

5, 2008. 

6 CDC, “FASD: Preventing Alcohol-Exposed Pregnancies,” Centers for Disease Control and Prevention, 

http://www.cdc.gov/ncbddd/fas/fasprev.htm, Accessed March 5, 2008. 
8

behavior, lifetime dependent living and problems with employment.7 Children with 

FASD are more likely to live in foster care or adoptive homes. They “are also placed in 

an unusually high number of different foster homes”8—perhaps as a result of the 

special challenges that face children with FASD that many foster families are 

unprepared to accommodate. 

The Incidence and Prevalence of FASD

In the United States, varying sources report widely divergent data on the estimated 

incidence and prevalence of FASD, in large part because of a critical need for more 

research and awareness. Some experts estimate that up to 10 times as many individuals 

are affected with the learning, behavior and neurological problems associated with 

FASD than are diagnosed with FAS9 due to significant under-diagnosis and 

underreporting. For just the single condition FAS, the prevalence is estimated at 

between 0.5 and 2 cases per 1000 live births.10

Reliable, accurate data about the incidence and prevalence of FASD are essential in 

order to ensure the success of programs and services aimed at the prevention and 

treatment of FASD.*

The Costs Associated with FAS and FASD

Several different health economists have estimated the cost burden in the United States 

due to FAS. Averaging the estimated costs from five different studies and correcting for 

2002 dollars, the best estimate is that in 2002 dollars FAS alone costs the United States 

$4 billion per year, and over $2 million per individual with FAS (over the lifespan).11 

Healthy People 2010 states that some estimates reach as high as $9.7 billion each year.12

 

7 Ann P. Streissguth, Helen M. Barr, Julia Kogan and Fred L. Bookstein, Understanding the Occurrence of 

Secondary Disabilities in Clients with FAS/FAE. Final Report (1996). (Seattle: University of Washington Press, 

1999), 30-33. 

 

According to Costs of Fetal Alcohol Spectrum Disorders, “one prevented case of FAS saves 

8 Ann P. Streissguth, Fetal Alcohol Syndrome: A Guide for Families and Communities (Baltimore: Paul H. 

Brooks Publishing Co., 1997), 179. 

9 Paul D. Sampson et al., “Incidence of Fetal Alcohol Syndrome and Prevalence of Alcohol-Related 

Neurodevelopmental Disorder,” Teratology, 56, no. 5 (1998): 317-326. 

10 Phillip A. May and J. Phillip Gossage, “Estimating the Prevalence of FAS: A Summary,” Alcohol 

Research and Health 25, no. 3 (2001): 165, http://pubs.niaaa.nih.gov/publications/arh25-3/159-167.htm, 

Accessed May 12, 2008.

* For a discussion of the incidence and prevalence of FASD in special populations see Appendix I. 

11Chuck Lupton, Larry Burd and Rick Harwood, “Cost of Fetal Alcohol Spectrum Disorders,” American 

Journal of Medical Genetics Part C: Seminars in Medical Genetics, 127C no. 1 (2004): 49. 

12 U.S. Department of Health and Human Services, Healthy People 2010, 16-5, can be viewed at: 

http://www.healthypeople.gov/Document/pdf/Volume2/16MICH.pdf. 
9

almost $130,000 in the first 5 years, $360, 000 in 10 years, $587,000 in 15 years, and more 

than $1 million in 30 years.”13 

The above figures represent only the costs of the single condition FAS, not the entire 

spectrum of disorders known as FASD which, as discussed above, may include as many 

as 10 times the number of individuals diagnosed with FAS. These estimates also do not 

include the costs of many public services including special education, vocational 

services, drug abuse treatment and the costs associated with the juvenile and criminal 

justice system—all of which are disproportionately utilized by people with FAS and 

FASD.14 Furthermore, most experts agree that there is a significant gap in available 

services for individuals with FASD and that this gap only serves to increase the 

occurrence of secondary disabilities, thus increasing the costs associated with treating

them.

Given the billions spent to address the outcomes of this completely preventable condition 

and its attendant secondary disabilities, the potential benefits of prevention programs 

and services extend beyond just the quality of life of the individual and their families—

a good in and of itself—but to the whole of society as well. At a time when many public 

benefits programs are facing significant funding challenges, the savings associated with 

each prevented case of FASD represents additional resources available to serve other 

beneficiaries at risk of losing much-needed benefits. 

Prevention and Early Intervention of FASD

FASD is completely preventable and, as indicated above, there are several opportunities 

for education and intervention that can have an impact on a woman’s decision to 

engage in high risk drinking during pregnancy—at school, at the doctor’s office and 

through better societal and cultural understanding of the risks associated with alcohol 

consumption during pregnancy. 

Two important methods to prevent FASD include: 

 Increasing public knowledge about FASD through general education, public 

service announcements, media attention, alcohol warning labels, posters, 

pamphlets and billboards; and

 Targeting women at risk by screening pregnant women and women of 

childbearing age for high risk alcohol use, and by providing interventions to 

those identified as high risk drinkers.15

 

13 Lupton et al., “Cost of Fetal Alcohol Spectrum Disorders,” 45. 

14 Ibid., 48. 

15 Adapted from SAMHSA, “Preventing FASD: Healthy Women, Healthy Babies,” Substance Abuse and 

Mental Health Services Administration, U.S. Department of Health and Human Services, 

http://fascenter.samhsa.gov/documents/WYNK_Preventing_FASD.pdf, Accessed March 4, 2008. 
10

Increasing Public Knowledge Through Early Education

There is no known safe level of alcohol consumption while pregnant. Since every case 

of FASD is the result of prenatal alcohol exposure, a mother can guarantee that her child 

will not be born with FASD if she abstains from drinking alcohol while pregnant.

The Office of the Surgeon General first published a public health advisory warning of 

the dangers of alcohol consumption during pregnancy in 1981 making the United States 

the first nation to “have a national policy recommending that women not drink during 

pregnancy or when planning a pregnancy.”16 Since that time, public awareness of the 

negative effects on the fetus of prenatal alcohol exposure has increased, as well as the 

awareness of the existence of FASD. However, studies have shown that while 73% of 

women have heard of FASD, only 29% of women of childbearing age can identify it as a 

birth defect. Many women believe that it is a condition in which babies are born 

addicted to alcohol (similar to babies born addicted to illegal substances such as cocaine 

and heroin).17 Such misinformation demonstrates the vital need for increased public 

education and awareness about the risks associated with prenatal alcohol exposure and 

the life and health outcomes for people born with FASD.

The opportunity to educate not only women, but all people, about the dangers of 

prenatal alcohol exposure begins as early as elementary school when children first 

begin to study biology and human development. Concentrated public education 

programs—such as those dedicated to educating school-aged children about the health 

risks associated with smoking—have proven effective at influencing decisions that can 

have a lifelong impact on future high risk behaviors and health outcomes.18 In addition 

to curriculum-based strategies, FASD education can also be integrated into alcohol and 

drug awareness programs and public awareness campaigns. 

Early education and interventions are key to ensuring that the dangers of prenatal 

alcohol exposure become common knowledge amongst current and future generations. 

Screening and Intervention in the Clinical Setting

In order to prevent FASD, it is imperative that women who drink during pregnancy, or 

are at risk of drinking during pregnancy, are identified early and are provided with the 

necessary interventions. According to the most recent Surgeon General’s Advisory on 

Alcohol Use in Pregnancy, “data suggest that the rates of binge drinking and drinking 

seven or more drinks per week among both pregnant women and non-pregnant women 

of childbearing age have not declined in recent years. Many women who know they are 

 

16 Streissguth, Fetal Alcohol Syndrome: A Guide for Families and Communities, 48. 

17 Streissguth, Fetal Alcohol Syndrome: A Guide for Families and Communities, 253.

18 CDC, “Preventing Tobacco Use Among Young People: A Report of the Surgeon General,” 8 

http://profiles.nlm.nih.gov/NN/B/C/F/T/_/nnbcft.pdf, Accessed 5/07/08.
11

pregnant report drinking at these levels.”19 Various studies place the number of 

women that drink at least some alcohol during pregnancy between 10 and 20 percent,20

and the number of women who report frequent drinking during pregnancy has 

increased from 0.8 percent in 1991 to 3.5 percent in 1995.21 

Routine screenings of all pregnant women for high risk alcohol consumption must 

become part of the standardized prenatal exam in order to ensure early identification 

and intervention for those at risk of having a child with FASD. In 1987 only 34% of 

obstetricians screened their patients for alcohol abuse.22 Further complicating early 

identification of high risk alcohol consumption is the finding that pregnant women are 

“likely to deny or minimize their drinking during pregnancy out of embarrassment.”23 

Clinically developed screening tools administered in a clinical setting have proven more 

effective than self-reporting at identifying those engaging in high risk behaviors. 

However, inconsistent screening practices by obstetricians result in too many women 

falling through the cracks.24 

Once a woman has been identified as engaging in high risk alcohol consumption, 

intervention and treatment must be the next step. For example, studies have shown 

that an intervention strategy known as a brief intervention25

 

19 U.S. Department of Health and Human Services, Surgeon General’s Advisory on Alcohol Use in Pregnancy, 

can be viewed at: 

can have a positive impact 

http://www.hhs.gov/surgeongeneral/pressreleases/sg02222005.html. 20 10%--CDC, “Alcohol Consumption Among Women Who Are Pregnant or Who Might Become 

Pregnant,” http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5350a4.htm, Accessed 5/07/08; 

13%--CDC, “Alcohol Use Among Women of Childbearing Age,” 

http://www.cdc.gov/mmwR/preview/mmwrhtml/mm5113a2.htm, Accessed 5/07/08; 20%--Grace 

Chang, “Alcohol-Screening Instruments for Pregnant Women,” Alcohol Research and Health 25, no. 3 

(2001): 204. 

21 Chang, “Alcohol-Screening Instruments for Pregnant Women,” 204. 

22 Ibid.

23 Ibid. 

24 Ibid., 205. 

25 Nancy Sheehy Handmaker and Paula Wilbourne, “Motivational Interventions in Prenatal Clinics,” Alcohol 

Research and Health 25, no. 3 (2001), http://pubs.niaaa.nih.gov/publications/arh25-3/219-299.htm, Accessed May 

12, 2008; U.S. Preventative Services Task Force, “Screening and Behavioral Counseling Interventions in Primary 

Care to Reduce Alcohol Misuses: Recommendation Statement,” Annals of Internal Medicine (2004) 140 (7):554-

556; Evelyn P. Whitlock, Michael R. Polen, Carla A. Green, Tracy Orleans, and Jonathan Klein. Behavioral 

Counseling Interventions in Primary Care to Reduce Ricky/harmful Alcohol Use by Adults: A summary of the 

evidence for the U.S. Preventative Services Task Force. Annals of Internal Medicine (2004) 140(7):557-568; 

NIAAA, “Helping Patients Who Drink Too Much, A Clinician’s Guide. (2005 edition), NIH Publication No. 07-

3769, U.S. Department of Health & Human Services, 

http://pubs.niaaa.nih.gov/publications/Practitioner/CliniciansGuide2005/clinicians_guide.htm, Accessed May 12, 

2008. 
12

on a woman’s decision to engage in high risk alcohol consumption while pregnant26

and can be easily incorporated into existing clinical settings and social services.27 

Increasing Societal and Cultural Understanding: Healthy People 2010

Given the incredible potential for both an improved quality of life for individuals at risk 

for FASD and intellectual disabilities, and the savings associated with each case 

prevented, it is no surprise that Healthy People 2010—the health policy of the United 

States Government—includes reducing the occurrence of the single condition FAS as a 

priority area under the Maternal, Infant and Child Health priorities.28 It also includes 

health objectives aimed at decreasing intellectual disabilities and low birth weight, and 

increasing prenatal care—all goals related to FAS.29 

While it is promising that FAS is specified as a priority of Healthy People 2010, FAS was 

also a priority in Healthy People 2000 and failed to show improved outcomes. In fact, 

FAS outcomes worsened and lost rather than gained ground toward Healthy People 

2000 targets.30 Healthy People 2010 is in jeopardy of similarly disappointing, or even 

worsening results. According to Progress Toward Healthy People 2010 Targets, the subobjectives for FAS could not be assessed, and the sub-objectives for intellectual 

disabilities and low birth weight have moved farther away from their targets. 31 By 

including FAS and intellectual disabilities as specific objectives in Healthy People 2010, 

the Federal government has signaled its dedication to decreasing the incidences of both 

conditions. However, given the disappointing results in reaching the FAS goals set 

over the last 15 years, it is clear that a more focused effort is needed. 

Recommendations

The President’s Committee recommends that the President:

1. Urge the private sector to establish a research and clinical consortium on FASD. 

As detailed in section one of this report, condition-specific consortiums serve to 

foster communication, research and clinical best practices. 

 

26 Grace Chang, “Screening and Brief Intervention in Prenatal Care Settings,” Alcohol Research and 

Health 28, no. 2 (2004/2005), http://pubs.niaaa.nih.gov/publications/arh28-2/80-84.htm, Accessed May 

12, 2008. 

27 Streissguth, Fetal Alcohol Syndrome: A Guide for Families and Communities, 268.

28 U.S. Department of Health and Human Services, Healthy People 2010, Objective 16-18, can be viewed at: 

http://www.healthypeople.gov/Document/pdf/Volume2/16MICH.pdf. 

29 Ibid., Objectives 16-6, 16-10 and 16-14. 

30 U.S. Department of Health and Human Services, “Healthy People 2000, Progress Review: Maternal and 

Infant Health,” 

http://odphp.osophs.dhhs.gov/pubs/hp2000/PROGRVW/materinfant/maternalprog.htm, Accessed 

March 19, 2008. 

31 U.S. Department of Health and Human Services, “Progress Toward Healthy People 2010 Targets,” 

http://www.healthypeople.gov/data/midcourse/html/focusareas/fa16progresshp.htm, Accessed 

March 19, 2008. 
13

2. Instruct the appropriate Federal agencies to conduct research to obtain more 

accurate data regarding the incidence and prevalence of FASD in the United 

States. 

3. Promote renewed dedication to the prevention of FASD through early education, 

increased screening and prevention in clinical settings, and renewed dedication 

to public awareness of FASD through Federal health initiatives such as Healthy 

People 2010 and Healthy People 2020. 
14

Conclusion

Every life has value and we affirm our belief in the value of people with intellectual 

disabilities through our commitment to improving their life and health outcomes. 

Cutting edge technologies and the rapid pace of scientific discovery provide nearly 

limitless opportunities to improve the quality of care available to those who need it 

most. But, we must work towards improving the pace of translational research through 

more collaborative efforts that ensure the most efficient use of our time and resources. 

Through the development of condition-specific research and clinical consortiums, we 

can realize our goal of more efficient, streamlined health care systems and people with 

intellectual disabilities will benefit from improved access to much-needed care. 

We can also improve the life and health outcomes of people with intellectual disabilities 

by working toward the eradication of the completely preventable condition, fetal 

alcohol spectrum disorder (FASD). In order to attain the goals outlined in Healthy 

People 2010 we must: conduct the necessary research on the incidence and prevalence 

of FASD in the United States; promote educational opportunities at all levels on the 

effects of high risk drinking while pregnant; and promote the development of a 

research and clinical consortium on FASD. 

The President’s Committee for People with Intellectual Disabilities affirms its belief in 

the value of people with intellectual disabilities and urges the President to utilize the 

recommendations in this report to improve the quality of life for people with 

intellectual disabilities and their families through an increased commitment to research 

and prevention. 
i

Appendix I

Special Populations

The occurrence of FASD is not limited to a single racial or ethnic population, nor is it 

limited to one particular socio-economic background. However, several risk factors 

consistently indicate an increased risk of heavy maternal drinking and the occurrence of 

FASD, including: 

 Family social traits, including: alcohol misuse/abuse in the family, alcohol 

misuse/abuse by the woman’s male partner, tenuous marital status 

(cohabitation, never married, separated, or divorced), and loss of children to 

foster or adoptive placement;

 Health factors, including: older than age 25 when FASD child is born, already 

has three or more children when FASD child is born, use of other drugs, 

including tobacco and illicit substances, morbidity, or premature mortality from 

alcohol-related causes;

 Socio-economic status, including: low socio-economic status, social transience, 

and unemployment or marginal employment;

 Drinking patterns, including: early age at onset of regular drinking, frequent 

binge drinking (defined as consuming five or more drinks per occasion, two or 

more days per week), frequent drinking (defined as drinking every day or every 

weekend), high blood alcohol concentration, and no reduction in drinking 

during pregnancy;

 Psychological profile, including: low self-esteem, depression, and sexual 

dysfunction; and

 Local culture and community factors, including: relative tolerance of heavy 

drinking. 32

In addition to the above risk factors, populations with particularly high prevalence rates 

of alcohol abuse and alcoholism also experience above average incidences of FASD. For 

example, among some native tribes the prevalence of FAS is well above the national 

average.33 In Alaska, the prevalence of FASD is “5.6 per 1000 live births for American 

Indians/Alaska Natives, compared with 1.5 per 1000 in the state overall.”34

 

32 Phillip A. May and J. Phillip Gossage, “Estimating the Prevalence of FAS: A Summary,” 165. 

33 SAMHSA, “FASD Among Native Americans,” Substance Abuse and Mental Health Services 

Administration, U.S. Department of Health and Human Services, 

http://download.ncadi.samhsa.gov/Prevline/pdfs/SMA06-4245.pdf, Accessed on March 4, 2008. 

34 Ibid.
ii

Acknowledging and understanding the risk factors associated with maternal drinking 

and FASD provides an important opportunity to tailor programs and services to 

specific risk factors and make significant improvements in prevention efforts.
iii

Appendix II

Federal Government Agencies and Collaboratives with Initiatives and Large Programs 

relevant to FASD

 NIAAA – National Institute on Alcohol Abuse and Alcoholism located at the 

National Institutes of Health (NIH), Department of Health and Human Services 

(HHS)

 SAMHSA – Substance Abuse and Mental Health Services Administration located at 

HHS

 National Center on Birth Defects and Developmental Disabilities, Centers for 

Disease Control and Prevention 

 Interagency Coordinating Committee on Fetal Alcohol Syndrome (ICCFAS)35

o Department of Justice, Office of Juvenile and Delinquency Prevention

—

FY2008 membership includes:

o Department of Education, Office of Special Education and Rehabilitation 

Services

o Department of Health and Human Services

 Agency for Healthcare Research and Quality (AHRQ)

 Centers for Disease Control and Prevention (CDC)

 Health Resources Services Administration (HRSA)

 Indian Health Service (IHS)

 Substance Abuse and Mental Health Services Administration 

(SAMHSA)

 National Institutes of Health (NIH)

• National Institute on Alcohol Abuse and Alcoholism (NIAAA)

• National Institute of Child Health and Human Development 

(NICHD)

 Surgeon General’s Advisory

 Anti-Drug Abuse Act of 1988 – requiring warning labels on all alcoholic beverages

 

35 The ICCFAS was established on the recommendation of the Institute of Medicine’s Committee to Study FAS. 

The ICCFAS is lead by and supported by NIAAA, NIH.
iv

Acknowledgments

The President’s Committee for People with Intellectual Disabilities extends appreciation 

to the following individuals for their contributions to Report to the President: The Promise 

of Research and Prevention. 

Sally M. Anderson, Ph.D.

Coordinator and Executive Secretary 

Interagency Coordinating Committee on Fetal

 Alcohol Syndrome

Office of the Director

National Institute on Alcohol Abuse and

 Alcoholism

National Institutes of Health

U.S. Department of Health and Human Services

Fred L. Bookstein, Ph.D.

Scientific Director

Fetal Alcohol and Drug Unit

Department of Psychiatry and Behavioral

 Sciences

University of Washington School of Medicine

Ahmed Calvo, MD, MPH

Acting Deputy Director

Health Resources and Services Administration

Center for Quality

Office of the Administrator 

U.S. Department of Health and Human Services

Grace Chang, M.D., M.P.H

Associate Professor of Psychiatry

Harvard Medical School

Brigham and Women’s Hospital

Claire Coles, Ph.D.

Psychologist

Emory University School of Medicine

Department of Psychiatry and Behavioral 

Sciences

Kay Kelly

Project Director

FASD Legal Issues Resource Center

Fetal Alcohol and Drug Unit

Sarah R. Linde-Feucht, M.D.

CAPT USPHS

Deputy Director

Office of Disease Prevention and Health

 Promotion

U.S. Department of Health and Human Services

James N. Stream

Executive Director

Arc of Riverside, and

Member

California FASD Task Force

Ann P. Streissguth, Ph.D.

Professor Emeritus

Department of Psychiatry and Behavioral

 Sciences

University of Washington School of Medicine

Nicole Tartaglia, M.D.

Assistant Professor of Pediatrics

Children’s Hospital – Denver

Fragile X Treatment & Research Center

University of Colorado

Kenneth R. Warren, Ph.D.

Deputy Director

National Institute on Alcohol Abuse and

 Alcoholism 

National Institutes of Health

U.S. Department of Health and Human Services, 

and

Chairperson

Interagency Coordinating Committee on Fetal

 Alcohol Syndrome
iv

Citizen Members

Aiken, Clay

Raleigh, North Carolina

Barraza, Ricardo Jr. 

El Paso, TX

Billmire, Valerie

Park City, Utah

Boles, James

Amherst, NY

Edwards, William

Pasadena, California

Gonzales, Carmela Vargas

Taos, New Mexico

Hollin, Harris N.

Palm Beach, Florida

O’Halloran, Casey Patrick

North Fort Meyers, Florida

Preshong Brown, Stephanie

Palm City, Florida

Reilly, Thomas J.

Wyomissing, Pennsylvania

Rhatigan, Steven C.

The Woodlands, Texas

Sharp-Pucci, MaryMargaret

Batavia, Illinois

Starnes, Linda Hampton

Longwood, Florida

Suroviec, Stephen

Lewisberry, Pennsylvania

Tienken, William

Clarendon Hills, Illinois

Word Dennis, Sharman

Silver Spring, Maryland
v

Ex officio Members

The Attorney General 

The Honorable Michael Mukasey

U.S. Department of Justice

Washington, DC 

Represented by:

Mark Gross

Deputy Chief, Appellate Section

Civil Rights Division

The Secretary of the Interior

The Honorable Dirk Kempthorne

U.S. Department of the Interior

Washington, DC

Represented by:

Jerold L. Gidner

Deputy Bureau Director

Indian Services

The Secretary of Commerce

The Honorable Carlos M. Gutierrez

U.S. Department of Commerce

Washington, DC

Represented by:

Pat Leahy

Director for Legislative and Intergovernmental

 Affairs

The Secretary of Labor

The Honorable Elaine L. Chao

U.S. Department of Labor

Washington, DC

Represented by:

Neil Romano

Assistant Secretary

Office of Disability Employment Policy

The Secretary of Health and Human Services

The Honorable Michael O. Leavitt

U.S. Department of Health and Human Services

Washington, DC

Represented by:

The Honorable Margaret Giannini, M.D., 

F.A.A.P.

Director

Office on Disability

The Acting Secretary for Housing and Urban 

Development

The Honorable Roy A. Bernardi

U.S. Department of Housing and Urban

 Development

Washington, DC

Represented by:

Stephen B. Hollingshead, Ph.D.

Senior Advisor to the Secretary

The Secretary of Transportation

The Honorable Mary E. Peters

U.S. Department of Transportation

Washington, DC

Represented by:

Caffin Gordon

Associate Director for Policy and Quality

 Control

Departmental Office of Civil Rights 

 
vi

The Secretary of Education

The Honorable Margaret Spelling

U.S. Department of Education

Washington, DC

Represented by:

Tracy R. Justesen

Assistant Secretary for Special Education and

 Rehabilitative Services

The Secretary of Homeland Security

The Honorable Michael Chertoff 

U.S. Department of Homeland Security

Washington, DC

Represented by:

Margaret Schaefer

Disability Policy Advisor

The Chief Executive Officer of the Corporation 

for National and Community Services

The Honorable David Eisner

Chief Executive Officer

Corporation for National and Community 

Services

Washington, DC

Represented by:

Jewel Bazilio-Bellegarde

Senior Training and Disability 

Inclusion Officer

The Commissioner of the Social Security 

Administration 

The Honorable Michael J. Astrue

Social Security Administration 

Baltimore, Maryland

 

Represented by:

Richard E. Balkus

Acting Associate Commissioner for

 Program Development and Research

The Chair of the Equal Employment 

Opportunity Commission

The Honorable Naomi C. Earp

Equal Employment Opportunity Commission

Washington, DC

Represented by:

Mary Kay Mauren

Senior Attorney/Advisor

The Chair of the National Council on 

Disability

The Honorable John R. Vaughn

National Council on Disability

Washington, DC

Represented by:

Milton Aponte

Council Member

National Council on Disability
vii

Staff

Sally Atwater

Executive Director

Telephone: 202-260-1500

E-mail: satwater@acf.hhs.gov 

Laverdia Taylor Roach

Program Analyst

Telephone: 202-205-5970

E-mail: lroach@acf.hhs.gov 

Kodie Ruzicka

Program Specialist

Telephone: 202-205-7989

E-mail: kruzicka@acf.hhs.gov 

Sheila Whittaker

Program Assistant

Telephone: 202-260-0452

E-mail: swhittaker@acf.hhs.gov

Madjid Karimi

Executive Assistant

Telephone: 202-619-3165

E-mail: madjid.karimieasl@acf.hhs.gov