Written by Suzie Franklin, Jennie’s mum
I like many parents of disabled children worried about what would happen to my daughter if I was not around. We set up a Circle of Support to make sure that there were enough people in Jennie’s life with the same interests and concerns for her future as me, who knew her well and who could help make the right choices about her future.
My daughter Jennie has autism and learning disabilities. She is fun, lively, independent and lives in her own home. We first decided to create a Circle of Support for Jennie back during her person-centred review when Helen Sanderson explained the purpose of Circles.
I remember asking Helen then if she would like to be involved and to be a member of Jennie’s Circle and she immediately said yes. Being a member of someone’s Circle of Support is a voluntary role, so we asked everyone at Jennie’s review whether they would like to participate. The Circle started with family, Dave, Matt and I, and friends Julie and Debbie. Debbie is a close and valued friend and at that time colleague. She has two sons with autism so brought a different perspective, as a friend looking out for me but also a professional in the field of autism. Another friend, Carol, who used to be one of Jennie’s support workers, also volunteered and attends meetings when she can. Jennie’s Dad joined the Circle at a later stage for a while. It is a brilliant combination of family and friends who know Jennie well and have her best interests at heart. But also the Circle has good personal and professional qualities, particularly with Helen and Julie having person-centred and service backgrounds.
Helen led the first circle meeting and continues to facilitate meetings now. She introduced us to the principles of Positive and Productive meetings, and this means that we have a clear purpose for our meetings, agreed rules, and we use ‘rounds’ and share roles. It’s very important to share roles so that everything does not end up on one person. When the Circle first started meeting, these were our roles:
- Dave and I were there to support Jennie
- Matt was the timekeeper
- Julie and Debbie provided food and drinks
- Helen was the facilitator
- We took turns to record meetings
There were a few rules, such as:
- have fun and food
- the meetings are confidential
- speak up and ask questions if things are not clear
- be honest and open about differing opinions
- meetings would be held at our house.
I was relieved we were sharing responsibilities because I felt so much was already resting on my shoulders with organising reviews and keeping the Essential Lifestyle Plan up to date. Once Jennie’s Circle was established it started to take that weight off me. Thinking about the future and how to make it happen is stressful for families of disabled children and the Circle helped ease that burden.
I think most of the time I have made good decisions with Jennie’s best interests at heart but sometimes decisions can be made that are better for the parent and not necessarily right for the child. The Circle has enabled other people to challenge me in a safe way by asking ‘is that right for Jennie?’ and that has been really good for me.
I wanted to see Jennie happy and settled and now the Circle means I don’t have to worry about her because if I am not around I know they will continue supporting Jennie and everything we want collectively for her will carry on. The Circle will provide a forum to support Jennie the way I would like.
Suzie and Helen have recently written a book sharing Jennie’s transition journey and her Circle of Support which you can read more about here.