For this meet-up families caring for children and young people were joined by Ros Cook, Service Director for AMAZE
We each introduced ourselves, our caring role and, with reference to the very wet weather we have had lately, our favourite activity to do when it’s pouring outside. Curling up with the cat, sticking on a movie and donning on all waterproof to brave the elements to name a few.
Speaking about the Support Collective, one parent who moved to the country in the last few years, said: “It’s lovely to be with parents in the same position, especially as someone in a new country who hasn’t been able to get to know new people in the normal way because of the pandemic.” Members of the Support Collective shared some current challenges including navigating aspects of personal care with their child, negotiating support for transport to and from school and expanding social circles for young people experiencing isolation.
We also welcomed two social work students from University of Sussex on placement with The Advocacy People who are currently researching people’s experience of the Continuing Health Care process (https://forms.gle/HecDQ6UPr9wBzx6j9).
Speaking from home, Ros shared that she is the mother of a neurodivergent adult son. AMAZE started in its current form in 1997 as a parent-/carer-led organisation for information, advice and support. The founders wanted to set up something to support the next generation of parents following their own experiences supporting their children with disabilities or Special Educational Needs (SEN). Families need more awareness of what services they are entitled to. There has also always been an aspect of bringing people together to share experiences and solidarity.
Ros offered a summary of services:
– AMAZE works with children with any kind of SEN or disability up to 25 years of age
– Trustees and most of the staff are parent-carers – also increasingly including young people with SEN as part of the workforce
– Most work is in East Sussex, Brighton and Hove (and a little in West Sussex)
– AMAZE is intended to offer impartial advice on all issues to do with Special Educational Needs and Disability (SEND)
– Provide self-help/guidance resources
– Every term, run a workshop on a particular area, e.g. EHCP reviews
– Run an advice line (although demand is high at the moment, so not to be used in a crisis) – you can email [email protected] or call 01273 772289, Monday to Friday 9:30am-2:30pm
– Provide advocacy for young people in e.g. EHCP reviews
– Provide support for parents who have additional barriers, e.g. English as a Second Language
– Help for parents around accessing Disability Living Allowance (under 16) and Personal Independence Payments (over 16) (two non-means tested benefits) – these are hard work to claim, but important to get at the right level for the needs of the person you support
– Befriending/buddying and group programmes for peer support – specific groups include:
o Primary-aged children with autism
o Older children with autism
o The Brunch Club – “pan-disability group online”
o Information sessions on key topics for parents of 16-25 year olds (e.g. finances post-16; planning for accommodation)
– Amazing Futures activity group for 14-16 year olds to join in by themselves
– Looking Forward Project for young people aged 14 upwards – careers guidance for young people in conjunction with their parents to plan longer-term future for young person
– Stay in touch via the newsletter: https://amazesussex.org.uk/news/newsletter/
Next Support Collective online meet-up for parents and carers supporting children and young peopler: Monday 21st June, 11am – 12pm.
To join the Zoom, email Esther for a link, [email protected].