Our support group for families raising children with Fetal Alcohol Spectrum Disorders (FASD) began in 1994 with just two parents.  We have been meeting once a month ever since then.  Our group has been the hub of many wonderful events, including FASD Awareness Day activities that have brought volunteers forward, and the families provide a compassionate network for each other that result in long-lasting friendships.

These are my suggested steps for starting a support group that could become a media event to raise awareness and could eventually gather support for local services for families: 

 

Collect Your Resources.  Organize your materials on FASD.  Put together a notebook or file of important information about FASD.  Make sure you have a good fact sheet available that is current and includes references or citations for each fact.  Your status as an expert will depend on your credibility as well as your expertise.

http://www.come-over.to/FASCRC

 

Gather Data. Look up statistics for your state and/or county.  You need two numbers:  the birth rate (number of births per year for geographical area) and the population (number of people in geographical area).  You can get some good estimates by using Larry Burd's cost and prevalent calculator (for US states) - just plug in your two numbers here: http://www.online-clinic.com/Content/Materials/calculator.asp

 

Investigate.  Do some investigative work in your state.  Find out about the current law or policy regarding criteria to qualify for services for persons with developmental disabilities (some laws are old and go by IQ under 70, other states have changed to not look at IQ and look at functional ability).  Find out what services are available for individuals with FASD, like early intervention or respite.  Find out what child protective services know about FASD.  Find out how many individuals have been identified as having FASD (from department of DD or MR services) and see how that compares to Burd's estimate.  This will all be good data to provide to the reporter.

 

Connect With Families.  Find just one other family.  Join Faslink if you don't know someone else in your area yet.  Call families listed in the NOFAS directory.

http://www.faslink.org/faslink.htm

http://www.nofas.org/resource/directory.aspx

 

Connect With Organizations.  Join your local organization for families and individuals with developmental disabilities.  I joined our local council for Developmental Disabilities and they have helped me lots of times with events and projects.  I also joined the local and state Arc chapter, and they helped with prevention projects and the conference we had here.  The Arc and other DD groups are supportive of ALL individuals with Developmental Disabilities, even those who do not mental retardation.  The Arc has excellent materials (free download) for community awareness projects for youth and for chapters or small groups.  Parent to Parent organizations are good too.  Connections with families who are dealing with other disabilities helps you raise awareness among the disability community to help them recognize that many of the individuals have undiagnosed FASD, and helps families learn how to navigate the local systems.  This is really important.

http://www.thearc.org/   

 

Connect With Your Lawmakers.  Write a one page letter about your child, what obstacles you have faced, what needs are unmet, what you would like in place for your child's safety and well being.  Combine some facts with some personal perspective.  Send this to your legislators, a separate letter to each one, include a photo of your child.  Then make an appointment to meet with your legislator.  Here are some sample letters:

http://www.come-over.to/FASDAY/FASDAYletters.htm

 

Prepare Materials.  Get some handouts ready.  First download the brochures from my web site and find an agency that will make copies for you (each one a different color if possible) or get someone to donate a printer and paper and ink cartridge and do it yourself.  Make up information packets.  http://come-over.to/FAS/brochures/

 

Connect With a Sponsor.  Find a professional or agency who is willing to help you get started, maybe provide a meeting place and maybe even send out notices for you after you get established.  The NOFAS directory lists professionals and agencies that can be asked to sponsor your group.  Arrange a personal meeting and take an information packet with you.  If no sponsor can be found, pick a local library that provides free meeting rooms for community events.  Be sure to list your group in the NOFAS directory.

http://www.nofas.org/fasdirect/index.htm

http://depts.washington.edu/fadu/Support.Groups.html

 

Publicize Your Group.  Run a public service ad in your local paper announcing the meeting of the new support group.  Be willing to put your phone number out there for others to contact.  You will hear from a few parents who are desperate to connect with you and from a few professionals who have a client to refer to you.  The best way to do this would be to ask a reporter to cover this as a media event.  "New Fetal Alcohol Support Group!"  Pick a reporter who has covered disability issues in a respectful and compassionate way, and call them and make an appointment with them.  Give them the handouts from my site and the estimate data from Burd's site.  Here are some news stories initiated by parents:

http://www.come-over.to/FAS/MikeKempe.htm

http://come-over.to/FAS/SheenasLetter.htm

 

Plan a Media Event.  Projects and activities in the community can be publicized in your local newspaper.  Stories will give information on your group and may motivate more families to connect with your group, and will show professionals and agencies that there is an active support group to which they can refer their clients and patients.  Look at the activities listed on the FASDay site and see what you can use, depending on if there is just one person (you can do plenty all on your own) or a group.  www.fasday.com

When you are willing to put forth this kind of effort in your community, you will begin to see the awareness being raised.  Change is slow and it takes time.  But this kind of plan will work!

Oh yes, here is where US citizens can find office addresses for your representatives, and even find out who they are, if you don't already know: http://www.vote-smart.org/index.htm

If each of you did just one step each month, by FASDay next year, you will be ready to raise awareness in your community in a way that might make a big difference for your child's future.  And you'll have a support group going too!