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Self Advocates with FASD in Action Network

As individuals with Fetal Alcohol Spectrum Disorders (FASD), we don’t get many opportunities to network with each other or talk about issues that are important to us. We want to talk about our own personal goals and dreams for our lives with other people that have an FASD like us. That’s why we started the SAFA Network!
SAFA Network Coordinators


The idea of a self-advocacy group for individuals with FASD was first discussed at a 2009 meeting of the Substance Abuse and Mental Health Services Administration (SAMHSA) FASD Center for Excellence (Center) Expert Panel. Members of the Expert Panel agreed that it was an important idea to expand upon and offered their encouragement and support. (Even before the advocacy group was officially formed, individuals with an FASD on the Expert Panel worked to change the Expert Panel's charge to indicate its responsibility to help SAMHSA understand how to get the right services and accommodations in education, the workplace, and the legal system for people with an FASD.)

The self advocacy group was initially established to build and support a network of people with FASD to organize, attend, and help facilitate a self-advocacy track at the annual Building FASD State Systems (BFSS) Conference. The conference supports the Center's legislative mandate to provide technical assistance to communities developing FASD systems of care. (The meeting track at BFSS remains one of the group's primary goals, but since its beginning additional goals have been added.)

In March 2011, The Arc and the Center worked together to formally establish the Self Advocates with FASD in Action (SAFA) Network. Two members of the Center's Expert Panel, who are individuals with an FASD, serve as SAFA Project Coordinators. Their work is supported by their mothers and the SAFA Project Liaison—Leigh Ann Davis, M.S.S.W., M.P.A., an employee of The Arc who is also a member of the Center's Expert Panel.

Recruitment of the Founding Members

The first step for the group was to find and recruit young adults age 18 and above with an FASD who had an interest in joining SAFA and who had leadership qualities and skills that could contribute to the group's long-term success. The recruitment happened in several ways, including referrals from members of Center-affiliated groups (e.g., the Expert Panel), announcements to other FASD-related groups and organizations, and meeting interested applicants at SAFA exhibits and presentations conducted throughout the country. From the applications received, 12 members were selected based on criteria including geography, age, ethnicity, and level of affectedness of the applicant (the aim was to have a balance of people both mildly affected by FASD and those more heavily affected). Each SAFA member has a designated person to support him or her as needed in activities promoted by SAFA.

Mission and Vision

The vision of the SAFA Network is to–

  • Achieve our personal goals.
  • Help other members achieve their dreams.
  • Make a difference in our communities.

The mission of the SAFA Network is to–

  • Provide opportunities for adults with an FASD and the people who support them to connect with and support each other.
  • Improve quality of life for members and others affected by FASD.
  • Advocate for services needed across the lifespan for individuals with an FASD.
  • Educate professionals and the public about FASD and the importance of prevention.

Recent Activities

Twenty-two advocates and 22 support persons convened at the SAFA Network Meeting and the SAFA Network Meeting Track at the BFSS Conference on May 1–3, 2012, in Arlington, Virginia. Members presented on use of person-first language, tips for trainers and speakers, securing and keeping employment, and personal stories. The group also discussed their vision statement and sustainability. Activities of the group included:

  • Sharing information on member accomplishments and goals to show members’ strengths and to help support one another.
  • Developing a Web site for SAFA Exit Disclaimer Graphic housed on The Arc’s Web site.
  • Created Creating mission and vision statements.
  • Exhibited Exhibiting at Association of People Supporting EmploymentFirst (APSE) Advancing Employment: Connecting People National Conference in Arlington, Virginia on June 27-29, 2012.

Upcoming Activities and Events

Upcoming activities for the group include:

  • Offering assistance to State Coordinators.
  • Expanding membership (looking for representatives from unrepresented States and a few individuals over 50).
  • Holding quarterly webinars or conference calls.

Contact Information for SAFA Network Liaison

Leigh Ann Davis, M.S.S.W., M.P.A.
Project & Information Specialist
Chapter Excellence Group
The Arc of the United States
1825 K Street NW, Suite 1200
Washington, DC 20036
Phone: 202-534-3727
Toll free: 800-433-5255
Fax: 202-534-3731