Reflecting on 2011 – The story of Jennie’s Circle of Support

For many of us, New Year is a time for some reflection on the past year and resolutions for the year to come. This is true for HSA, as in the first week in January, we have two days together to learn from and celebrate the last year and plan for the future. I ask everyone to think about three or four things that they want to share that they are proud of. I would like to share with you something that I have been proud to be involved in and that is Jennie's Circle of Support. In December, I blogged about starting Jon's Circle, here Suzie, Jennie's Mum talks about the story of Jennie's circle, and the difference it has made.

"Jennie is 20 and has a warm personality; she is fun with a cheeky sense of humour, a real zest for life and is great company.

Even though it is sometimes hard for Jennie to articulate her thoughts and feelings, I admire her determination to communicate with us about whether she likes an activity, place or a person.

After Jennie was diagnosed with autism, we received four nights of overnight respite care a month and that began our journey with services.

In 2004 I learned about the world of person-centred thinking and planning. I was a bit cynical about the idea of person-centred planning at first and felt it was just another fad to come over from America and I was concerned that local authorities and provider organisations would not 'get on board' with the concept. But as soon as I realised its potential I jumped into it 100%. I went on a course for families and developed a person centred description of what is important to Jennie and how best to support her, with the help of everybody in her life who knew her best. Everyone involved in Jennie's life has a copy of her person centred description. When she was at school, a master copy stayed in Jennie's home/school communication book in her school bag so that comments and suggestions could be added by anyone, at any time who knew Jennie really well. I didn't want it to be this pristine plan that was stuck in a draw and as everyone got into the habit of using it, it became a 'living' document about Jennie with scribbles and crossings out - 'Jennie doesn't do this anymore she prefers this' - so we were constantly learning and everyone was using it and keeping it up to date.

I started worrying about Jennie's future and the transitions she would go through from finishing school, post-16 education and leaving children's services and moving into adult life. We were one of the first families to be offered a person centred review (Year 9 Review). There are a few important things I remember that came out of it. In particular it was the start of us looking at planning for Jennie's future. When we were developing her person centred description, I realised that I was making all the decisions for Jennie and that the emphasis needed to shift to Jennie being involved in making some of those decisions herself, whether I liked them or not!

We had also drawn a relationship circle for Jennie and it hit me that Jennie's circle included family but no friends. Although friendships had not been that important to her I thought we had a responsibility to look at this. So I raised this as an issue at the Year 9 review and asked everyone whether there were any relationships that Jennie seemed to be enjoying and this began work with Jennie to develop friendships. Her friendship with Rowenna came from the work that we did on this. They are still friends today.

A year later, Jennie has her Year 10 review. Both reviews made a huge difference to the way Jennie was included and talked about in a positive way. One of the main things to come out of the Year 10 review was the idea to set up a Circle of Support to help us achieve the future we wanted for Jennie and this has been pivotal. One of the long-term issues for me is that I'm not always going to be here to support Jennie. I wanted to make sure that there were enough people in her life, with the same interests and concerns for her future as me and who knew her well enough, who could make the right choices about what she wants when she is older. This was the reason behind setting up the Circle of Support.

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. Dave, Matt and I joined the circle as did Julie. Debbie, a friend and colleague, also volunteered. She is a close and valued friend and has two sons with autism so brought a different perspective, as a friend looking out for me and a professional perspective too. Another friend, Carol, who used to be one of Jennie's support workers, also volunteered and attends meetings when she can. Jennie's dad Derek joined the circle at a later stage. 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 a good personal and professional quality, particularly with Helen and Julie having person-centred and service backgrounds. Once the Circle of Support was established it started to take that weight off my shoulders.

In the first six months of the Circle, Helen suggested we do a Path for Jennie and we used this to start looking at Jennie's future. It was a very visual process, with two facilitators, who drew up a huge poster showing a path and all the things Jennie would need to journey along it. We started off by looking at our hopes and dreams, then what was positive and possible, and then looked at the steps we would need to take in two years, one year, and six months, to reach that point. So, in effect, you start off by looking into the future and then work backwards to set the goals and deadlines to achieve that future and this is all written up on the Path. Using the Path taught me that it is important to think really creatively because it encourages you to aim higher.

The Path was really useful because it kept us focused on what was important to Jennie and the possibilities that were out there. But I personally found the Path quite a challenging person-centred planning process to use because I had to change my attitude from thinking 'this is ridiculous, it's never going to happen' to, 'if you don't strive for the ultimate then you are never going to take little steps to reach your hopes and dreams'. This is when we started to think about personal budgets. To cut a long story short we got a resource allocation for Jennie and used information from her person centred description and Path to put together a support plan. Everything we had learned about Jennie, from person centred thinking and planning, pointed to the fact that it was crucially important for Jennie to live on her own, supported by people who understand her. We based our decisions on our collective understanding of Jennie.

We also did a community map(person centred thinking tool) and the circle members were tasked with looking at local activities, groups or places that Jennie could visit or be part of, that were linked to things that we knew from her person centred description and her Path were important to her, for example could she visit an art gallery or take art classes, were there any groups where she could develop friendships? It was about making sure that she had a full, rich, active life and was spending time with people that were important to her; the sort of thing that we would all strive to have in our lives.

This was all recorded in her support plan. As well as recording what is important to Jennie, the support plan outlines how her personal budget will be used; sets out her 'perfect week'; and includes a communication chart and decision-making profile. The support plan is a really important document because everything we wanted for Jennie in the plan was costed, so it had to be signed off by us and the local authority.

Life for Jennie, who is now living in her own flat, is fantastic. In fact, I would say that Jennie is really deliriously happy most of the time and it is a delight and a relief for me to see that. Jennie had a few difficult months settling in and so did I letting go. She has a really happy, active life and is supported by great people. She is enjoying the independence away from us. If you had said to me 10 years ago this would have happened I would never have believed it. I was worried that by then she might be in an institutional setting or in supported living with people she didn't like or, worse still, didn't choose to live with, but now all the worry has gone which has been amazing for me."

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