Enduring Circles of Support
Hello – my name is Pete, I am very happily married to the lovely Wendy and we have been blessed with 2 children – Nicholas (Niki) and Sarah. Both our kids are grown up now, and live independently in their own houses and both have paid work.
Due to Niki’s Profound and Multiple Learning Disabilities it has often been quite a challenge for us to enable Niki to live his good life, the very high level of support that he needs on a 24/7 basis means that our family easily fit within the CBF definitions of ‘Challenging Behaviour’.
Niki started using direct payments around 13 years ago and this has worked really well for him and his family. However once we had the direct payments up and running we started to realise that all of the good life that Niki had depended upon his mum and dad organising and running it – so the big question was what would happen to Niki’s good life if we were not around to do this?
We realised that Niki was going to need something that was not run by us that was owned and run by Niki that would last! We looked into setting up an ‘Enduring Circle of Support’.
We thought long and hard about who to engage as the circle facilitator – it had to be someone strong enough to stand up to us and always think of everything from Niki’s point of view – but the most important thing to us was that we needed someone who understood person centred planning and Niki’s civil rights so that he has a good and meaningful life.
Helen has now been paid as Niki’s circle facilitator for over 3 years. All the meetings are led by Helen who does a great job of facilitating and recording the meetings.
Niki’s circle of support now meets regularly, around every 3 months, although circle meetings can be quickly arranged if anything should crop up that needs discussion and action. Usually there are around 8 or 9 people at Niki’s house for the meetings – sometimes they end up being quite formal and sometimes it’s more like a giggly party – but Niki certainly seems to be enjoying them and no longer goes off to his train set like he always used to do!
The best way that I can explain how good the circle of support has been for me is to say that my life no longer revolves around Niki – I have gone back to being able to live my own life – I love both my kids and enjoy spending time with both of them – but there is also lots of ‘time for me’ now! I feel easier in myself because as I approach my 60th birthday I know that Niki is safe and living a good life – I feel that I have done all that is possible to make this ‘enduring’ even when I might not be around…..
Pete Crane, family carer