Bridging the Information Gap

Between FASD, the System, and Policy

Presentation by Teresa Kellerman

FAS Community Resource Center


Presentation | Outline | Worksheet | Resources | Email


So, you know all about the dangers of drinking during pregnancy, how devastating it is to the individual and the family, how it impacts on our society, how expensive it is to the community.


And now you want to do something about it.  So you educate some cohorts, form a workgroup or committee, formulate a strategy for prevention, and take action!


What’s missing?  Information.  The system of information that is in place for Fetal Alcohol Spectrum Disorders (FASD) is like the Historic Navajo Bridge here.  It was constructed of necessity many years ago, but is not adequate to meet the growing needs of the community.  The FASD information system has become weakened by misunderstandings, misinformation, and myths.


The first step to formulating a good prevention plan is to admit there’s a lot you don’t know about FASD, the service system, and the policies and laws that regulate those services.       ß









Bridging the Information Gap

The Grand Canyon of FASD

PowerPoint™ Presentation


“Bridging the Information Gap” is a one-hour PowerPoint™ presentation that can be offered as a stand-alone workshop or in conjunction with other presentations for a full-day conference.  To arrange for “Bridging the Information Gap” to be presented to your organization or group, or for information on the other presentations that are available, visit Fasstar Enterprises now.  View presentation outline.








Bridging the Information Gap

Outline Notes


Identify Information Gaps:

Ø                  FASD: Individuals and Families

Ø                  The System: Educators, Professionals, and Service Providers

Ø                   Policy: Legislators, Leaders, and Government Agency Directors


Identify Current Information Sources:

Ø                  Research Studies

Ø                  Congressional Report

Ø                  The Arc

Ø                  March of Dimes

Ø                  NOFAS, MOFAS

Ø                  FAS*FRI

Ø                   FAS Community Resource Center



Identify Key Issues: 

Ø                  Misinformation and myths

Ø                  Lack of knowledge about FASD

Ø                  Eligibility for services

Ø                  Difficulty Changing Laws

Ø                   Understanding the “System”



Paradigm Shifts:

Ø                  From the child failing in the program to the program not meeting the needs of the child

Ø                  From behavior seen not as willful misbehavior, but as an information processing disorder

Ø                  From assuming that the child won’t do it to understand that maybe the child can’t do it

Ø                  From trying harder and harder to fix a problem to trying a different approach

Ø                  From changing the child’s behavior to changing the child’s environment

Ø                  From perceiving birth mothers not as perpetrators of abuse, but as survivors of abuse

Ø                   From seeing FAS as only the “face” and MR to recognizing the entire invisible spectrum



Identify the Barriers:

Ø                  Lack of quality information at all levels

Ø                  Lack of funding to provide information

Ø                  Lack of well-trained trainers

Ø                  Inadequate curricula in medical schools

Ø                  Lack of quality curricula in K-12 classrooms

Ø                  Inadequate training for teachers

Ø                  Restrictive eligibility criteria

Ø                  Assumptions by service providers that they know enough

Ø                  Assumptions by one service system that FASD is served in other systems

Ø                  What is the greatest obstacle for individuals?

Ø                   What is the hidden barrier?


Identify your state’s issues.


Solutions: ?????











Bridging the Information Gap

Between Consumers, Providers, Policymakers




Who are the families?



Who are the providers?



Who are the policymakers?



What constitutes eligibility criteria in your state?



What are the key issues in your state?



What are the main obstacles in your state?



Where can you find quality information on FASD?



Where can you find information on services and service systems?



Where can you find information on laws and policies that govern the services?







Bridging the Information Gap

Between Consumers, Providers, Policymakers


Suggested Resources


About FASD:


Materials: Books, CDs, Videos, etc. FAS Store:

Lending library (free):  Claudia Barker in Texas

General Information: Facts, photos, stories, research, news, prevention, strategies:

Support and Communication:  Open mail list:

Estimating local cost and incidence:  Larry Burd’s cost and incidence calculator:

Prevention resources:

            The Arc:

            March of Dimes:


Intervention resources:  

            FAS FACTS:


            BC Ministry of Education:

Training and workshops:

            CSAP – FAS Center for Excellence:

          Fasstar Enterprises:



About Services and Systems:


State organizations/groups that know about FASD:

            FASD National Resource Directory:

State Protection & Advocacy agencies and state councils for developmental disabilities: 

            U.S. Administration for Children & Families:

Special Education/ IEP Process and Laws:

Special Education Advocacy:

Parent information and training: NICHCY

Eric Clearinghouse resources for disability advocacy:



About Making Laws and Changing Policies:


Association of University Centers on Disabilities:

Partners in Policymaking:

Identifying and contacting local legislators:

State and local governments:

Find information about alcohol issues:

Eric Clearinghouse resources for disability related legal issues:



Search for Information Related to FASD: 


FAS Community Resource Center:

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This website:

Last Update: May 25, 2003

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