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."