Bridging the Information Gap
Between
FASD, the System, and Policy
Presentation by
Teresa Kellerman
FAS Community
Resource Center
www.fasstar.com
Presentation | Outline | Worksheet | Resources | Email
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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
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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: ?????
Notes:
Bridging the Information Gap
Between Consumers, Providers, Policymakers
Worksheet
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:
http://www.come-over.to/FAS/store/
Lending library (free): Claudia Barker in Texas ckbarker@ev1.net
General Information: Facts, photos, stories,
research, news, prevention, strategies: www.fasstar.com/fas
Support and Communication: Open mail list: www.acbr.com/fas/faslink.htm
Estimating local cost and incidence: Larry Burd’s cost and incidence calculator: www.online-clinic.com
Prevention resources:
The
Arc: www.thearc.org/fetalalcohol.html
March
of Dimes: www.marchofdimes.com/professionals/681_1170.asp
Streissguth/FADU:
www.come-over.to/FAS/StreissguthPreventFAS.htm
Intervention resources:
FAS FACTS: www.fased.com
NOFAS: www.nofas.org/main/strategy.htm
BC
Ministry of Education: www.bced.gov.bc.ca/specialed/fas/
Training and workshops:
CSAP
– FAS Center for Excellence: http://fascenter.samhsa.gov/
Fasstar Enterprises: www.fasstar.com/workshop.htm
About Services and Systems:
State organizations/groups that know about
FASD:
FASD
National Resource Directory: http://www.mofas.org/fasdirect/
State Protection & Advocacy agencies and
state councils for developmental disabilities:
U.S.
Administration for Children & Families:
www.acf.dhhs.gov/programs/add/states/p&a.htm
Special Education/ IEP Process and Laws: www.ed.gov/offices/OSERS/OSEP
Special Education Advocacy: www.wrightslaw.com/
Parent information and training: NICHCY http://www.nichcy.org/states.htm
Eric Clearinghouse resources for disability advocacy: http://ericec.org/faq/legal-x.html
About Making Laws and Changing Policies:
Association of University Centers on Disabilities: http://www.aucd.org/
Partners in Policymaking: http://www.come-over.to/pip/
Identifying and contacting local
legislators: www.vote-smart.org
State and local governments: http://usinfo.state.gov/topical/rights/structur/main2.htm
Find information about alcohol issues:
http://www.cspinet.org/
Eric Clearinghouse resources for disability related legal issues: http://ericec.org/faq/legal-x.html
Search for Information Related to FASD:
FAS Community Resource Center: http://www.come-over.to/FASCRC/
Google Search Engine: www.google.com
This
website: http://www.fasstar.com/BIG.htm
Last
Update: May 25, 2003
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