We must not let all these children be forgotten.
When Laura and I first took this position, massFAS was already working with legislators in Massachusetts on a bill to help and support families with children (and adults) with FASD (Fetal Alcohol Spectrum Disorder). Well, the proposed bill was to change the definition of developmental disability to the same definition that the federal legislation uses. One of our biggest goals from the get-go was to do our best to get it passed this year. We found out on Monday that it did not pass. This happens with a lot of proposed bills. It makes me sad and frustrated, especially because those of us who live with this disability or care for someone with it know how badly help is needed. We had to search on our own to find education about every aspect of FASD from characteristics, dealing with school, finding appropriate services, understanding neuropsychological assessments, learning different strategies, and parenting techniques to foster our children’s growth and development and understand the difficulties that they face with this invisible brain-based disability.
One of the most rewarding things for Laura and I is that, because of our increasing social media presence, we have been contacted by many more parents and caregivers who we are raising and supporting people with an FASD. Good because it is our goal to reach and assist more families, yet sad because there are so many of us out there. The most important thing I have found in chatting with new families that we contact is that we sure have a great group of very well-educated (self-taught) parents who have done their homework! I know that Laura and I sure did, and I am in awe of all the warrior parents I have met!
That said, it should not be that way! When someone is given a diagnosis of FASD, there should be a clinic that you can go to, a list of service providers for education, counselling, therapies and other related services for parents and caregivers. That is what we are trying so hard to get established in our little state, and for the country with the FASD Respect Act spearheaded by FASD United.
As we continue to grow our little massFAS parents' group, we surely hope that means more influence as we band together to have our voices heard.
The most frustrating piece of this entire puzzle, though, is how little the world seems to know about FASD. There is a lot of new research out there that shows that:
· FASD is quite common worldwide, 2 ½ times more prevalent than autism (May, UNC Chapel Hill 2018)
· FASD is a brain-based disability not based on behavior, but based on brain differences with cognitive deficits
· FASD is often mis-diagnosed or not even considered as a diagnosis by physicians, and
· FASD parenting and education needs to be based on neurodiversity, not discipline.
And yet, the up-to-date information is not getting to the agencies that could really affect changes. The CDC (Centers for Disease Control) had a Fetal Alcohol Center of Excellence, but that was defunded a few years ago. In this current legislative session in Massachusetts, they voted to allow persons with developmental disabilities rights to go to colleges, and yet FASD is not recognized as one of those developmental disabilities. The government is enormously focused on prevention of alcohol exposure to infants, which is a valid and noble cause, but they are not supporting those individuals who have already been exposed to alcohol prenatally. That just baffles me! We must not let all these children be forgotten.
Laura and I will not stop advocating for this. We need all the help we can get from families and friends, though. Right now, we must start over, reexamine the bill we are asking for, rally the troops, and get the message out there. We have some great support through the ARC of Massachusetts, the Disability Law Center, Massachusetts Developmental Disability Council, and are asking for help from FASD United. We have several lawmakers who are very committed to this cause. We will look for more agencies to help and will try again. I know that, with our ever-growing group of super champion parents, we will get noticed!
FASD United is working diligently on federal legislation, The FASD Respect Act. Please, please, pretty please.........go to their website, and contact your Senators and Representatives about this important legislative effort. The end of the fiscal year for legislation on the Federal Level is Jan 2023. We still have time! Passage of that legislation would help us tremendously.