Take action!!
FASD Awareness Month
action:
- Introduce yourself (and / or your local support group if you’re part of one) to the local parent carer forum and liaise with them about FASD
Hashtag:
#FASDStrongerTogether
BACKGROUND
Parents and carers should have a voice in how local services are set up.
In England, parent carer forums are groups run by parents and carers of children with disabilities in local areas. It’s different in other parts of the UK but the principles are the same. It’s important to tie into existing networks where parents and carers voices are helping to influence local policies for children with disabilities.
They need to know about FASD.
These groups work on co-production with local authorities and health to ensure services meet the needs of children with disabilities and their families. They have experience, connections and knowledge that might be useful. Contact has more information about parent carer forums here. (While it’s England-specific the general information might be of use to those in other parts of the UK.)
Things to keep in mind:
- Parent carer forums may already have members who are raising children with FASD.
- Parent carer forums should have access to SEND board meetings.
- Local parent carer forums should be involved in workforce development meetings in the local area so it’s a useful starting point for covering basic awareness of FASD.
- Trainings for parent carer forums might be useful.
- The national parent carer forum should be encouraged to cover FASD to help ensure local parent carer forums are informed and able to meet the needs of the families they support.
- Local FASD support groups should link into parent carer forums where possible to get better insights into how the local structures work and how to have influence as people with lived experience.
Sample text to send to parent carer forums
You can do this individually or with your local FASD support group if you are part of one. They may already have some connections, so it’s useful to ask. FASD UK Alliance independent support groups are listed here.
Dear [x]:
I am raising a child with FASD (Fetal Alcohol Spectrum Disorder) and I would like to find out more about the work you do. I would also like to encourage you to learn more about FASD, a lifelong neurodevelopmental disability which affects 2-4% of the population but is little understood. Recently all the major public health bodies have recognised the need to improve services for FASD prevention, recognition, diagnosis and support. I would like to know what we can do locally to ensure the voices of those with FASD and their families are involved in co-production of local services. I would be happy to meet with you to discuss this further. [Add a bit about the challenges you face as a family accessing relevant FASD-informed services, if any exist. If they don’t, say that too.]
More information about FASD is here.
Information about how local areas can ramp up FASD services is here.
Sincerely yours,
[Your Name]
[Your address]
[Your email]
[Your phone number]
How to find your local parent carer forum (or its equivalent depending on where you live)
England – Contact has a list of local parent carer forums here. The National Network of Parent Carer Forums is here.
Wales – The All Wales Forum is a good place to start. Contact them here.
Scotland – Each local area has a carers association. You can find a list here.
Northern Ireland – You may know best your local networks, the system is a bit different than in other parts of the UK. Some links can be found here.
What is FASD?
Click here to download background about FASD.
Or go here for more info on our website.
For children and young people – go to www.fasd.me.
