1. The SAFA Network: Self-Advocates with FASD in Action
The Arc’s National Convention Denver, Colorado
September 18, 2011

2. OVERVIEW What is SAFA? How did SAFA get started? What does SAFA do?
How do I join the SAFA Network?

3. Rob Wybrecht Jasmine Suarez-O’Connor SAFA Network Coordinators
“As self-advocates with fetal alcohol spectrum disorders (FASDs), we don’t get too many opportunities to network with each other or talk about issues that are important to us personally. We also 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!”
Rob Wybrecht
Jasmine Suarez-O’Connor SAFA Network Coordinators
(keep or toss)

4. What is SAFA (Self-Advocates with FASD in Action)?
A national network of people 18 years and older who have an FASD
A committed group of advocates created by people with an FASD for people with FASD
A place for people with an FASD to connect, teach others about FASD, and become strong self-advocates

5. How did SAFA get started?
What our goal was
What our top priorities were
“I wanted Individuals with an FASD to be able to see what’s being done in the United States regarding FASD and to know that they have a voice.”
Rob Wybecht
The idea behind the SAFA Network began with two self-advocates with FASD who serve on The FASD Center for Excellence Expert Panel. Through this project, they are beginning a national self-advocacy group created by and for people with FASD.
I wanted Individuals with FAS to be able to see what’s being done in the United States, regarding FAS and to know that they have a voice. A sub-committee called “Self-Advocacy Planning Committee” was formed. The Co chairs were Rob Wybrecht, Jasmine O’Connor and Leigh Ann Davis. We had our first meeting in Feb
Our Purpose – To guide the work of the Expert Panel and keep it in touch with the needs and desires of people with FASD, and to explore issues related to self-advocacy.
Our top priorities – identify states that have people with FASD serving on their task force, create method to connect people with FASD with one another via conference calls, list serve groups, etc., fund a separate meeting or track about self-advocacy for next BFSS meeting, and look for ways to involve chapters of The Arc and NOFAS.

6. What does SAFA do?
Provide a place where people from all over the country who have an FASD can find a place to connect
Teach the importance of self-advocacy
Provide SAFA track at BFSS conference
The SAFA Network creates a place for people with FASD to learn more about: 1) what it means to have an FASD, 2) specific issues that affect people with an FASD, and 3) what it means to be a self-advocate and how to speak up for oneself.
Each year, the FASD Center for Excellence hosts a national conference to help support state systems that specifically address FASD. With support from The Arc, The SAFA Network is introducing a new self-advocacy track at the May 2011 Building FASD State Systems (BFSS) Conference developed by and for people with FASD. Topics for the self-advocacy track include learning about and building self-advocacy skills, understanding how FASD affects the brain, and learning how to use one’s gifts and talents in the real world to achieve real progress.
Up to 10 people with FASD (including a support person for each individual) were selected to be on the The SAFA Network’s Planning Committee. They were invited to attend this year’s BFSS conference and will be asked to help plan the self-advocacy track for the 2012 conference. Others interested in The SAFA Network who are unable to attend this year’s BFSS meeting are invited to participate up-coming SAFA conference calls.

7. What does SAFA do?
Host conference calls to discuss issues most important to SAFA members
Get the word out about SAFA by presenting/exhibiting at conferences
Help members define and reach personal and advocacy-related goals!

8. SAFA Network Members (2011)
Alaska – Nick Otness
Arizona – John Kellerman
California – Morgan Fawcett, Ricki Nelson
Illinois – Emily Travis
Maryland – Sam Mabie
Michigan – Tony Kezenius
Minnesota – Richard Walinski
Montana – Melissa Clark
Nevada – Amanda Oliver Blaine
Ohio – Sarah Kyser
Washington – Tessa Barnes Gelo
This is a list of names of the people who are SAFA Network Members for We hope to double the list of our members by the next SAFA conference in 2012! We have a total of 13 people in the SAFA Network, including SAFA Staff Rob and Jasmine.
Project Coordinators
Rob Wybrecht
Jasmine Suarez-O’Connor
Project Liaison
Leigh Ann Davis

9. SAFA’s First Meeting at BFSS Conference
May 2011
Picture with Morgan Fawcett who is a very gifted flute player at a workshop where participants received a flute lesson and were given their very own handmade flutes! This was taken at our first SAFA face to face meeting in May 2011 in Phoenix, AZ.
SAFA Network Members holding their NEW flutes!!!

10. What SAFA Can Do For You! You Can Learn…
Why self-advocacy is important
How to advocate for yourself and others
Now we will get into talking about self-advocacy. This is the presentation Jasmine, Dianne and Leigh Ann gave at the BFSS conference, but didn’t get to complete, so we thought we could finish it now!

11. You Can Learn… How to work together to achieve a goal
How to work with others
How to support each other in reaching a shared goal

12. SAFA Group Goal A goal is a plan for the future.
Group goals are about changing
something that affects a whole lot of people.
SAFA’s group goal for is to make sure every state is represented by someone with an FASD
KEEP THIS ONE!
HOW are we going to teach try to make sure each state with an FASD State Coordinator’s office has a person with an FASD involved with their efforts? How can you become the self-advocate FASD representative for your state/region or community?
Here is your first step:
Call your FASD State Coordinator and introduce yourself, set up a call or meeting, and brainstorm ways you can get involved in state-level advocacy. Here are some ideas you can give:
Speak with your state coordinator at various functions about how having an FASD affects your own life
Volunteer your own input/experiences/expertise and create fliers or other publications that advocates for your cause, or your state’s cause.
Find out ways to get active on state committees, workgroups, advisory groups/task force, etc.
Make sure that when the state is applying for various grants that people with an FASD are included

13. Examples of personal goals:
Become active in supporting or changing a law that affects people with an FASD in my community. (Contact one local organization who can help me do this).
Speak up at least one time at a meeting about FASD.
SAFA is also wanting to help it’s members reach their own personal goals. Here are two examples.

14. Future Activities of the SAFA Network!
Planning for the BFSS conference
Upcoming webinars (FREE)
(We want to hear from you! Share your story with us!)
Topics may include…
Employment, self-advocacy, How to stay safe in the community, Learning about your state FASD Coordinators, Building friendships, etc.
How to get involved in the planning of next BFSS Conference:
Let us know if you may be interested in speaking at the next BFSS Conference for the SAFA Network track of workshops.
How to get involved in future webinars:
One idea is to ask one person to share his/her story per each phone call. Each person can create a 3-5 slide show and send it to Leigh Ann so we can use it on our future calls. Let’s start with Rob and Jasmine, then go from there. We can help each other write our own stories so we are prepared to share them with others.
Let us know what topic is most important to you, do you have any ideas for speakers, or would you like to speak?

15. SAFA Exhibits & Presentations
The Arc’s National Convention Denver, Colorado September 17-19
National Federation of Families for Children’s Mental Health Washington, D.C. November 18-20
TASH National Conference Atlanta, Georgia November 30-December 3
KEEP THIS ONE!
Another big goal of our project is to get the word out about who the SAFA Network is and try to get more people involved. One way we do this is by exhibiting at different conferences. Exhibit just means to show a poster or hand out brochures about your agency or project at different places.
We have decided to go and present or exhibit at these 3 conferences which are listed on your screen.

16. Questions? Comments? SAFA Project Coordinators Rob Wybrecht
Jasmine Suarez
O’Conner
SAFA Project Liaison Leigh Ann Davis The SAFA Network
If you have an FASD and are 18 or older and would like to join the SAFA Network, please let us know! We can put your name on our list to receive announcements about future SAFA conference calls and meetings.