Written by Henry’s mum

kathWe’re in transition – that horrible halfway space between children’s and adults’ services, a no man’s land littered with the complex policies and procedures of health, education, and social care.

My son, Henry* is 17; he is a much loved and loving young man; he enjoys pylons, parsnip crisps and chocolate as well as his computer. He has an eclectic taste in music ranging from Aha and Duran Duran to Ellie Goulding. He is great company out on a walk or going to the shops, and, over the years, he has also collected a range of labels including ‘having a learning disability’.

When Henry was little we opted for ‘inclusion’ so Henry was in mainstream education since he began at primary school and remained there until he was sixteen.  He’s now in specialist post-sixteen provision.  Being in mainstream has had lots of benefits for Henry and for our family but it has not been easy.  One of the difficulties has been that it has disconnected us as a family from some of the services available to families who opt for special education in our local authority.  When assessed for social care support, for example, we were asked where Henry went to school as if this was some sort of indicator of his level of need, which made no sense to me.  So although we now have a children’s social worker (after three attempts) and an adult social worker (again, we fought hard) we have found ourselves out of the loop in transition – any information we have got, we have had to fight for. We felt we were making no progress and we were going round in circles.  My frustration was growing at meetings that seemed to be going nowhere – slowly!

Through a project at work, I met Helen Sanderson and explained that we were in transition and that Henry had never really had a person-centred annual review of his statement of special educational needs. Helen suggested that Helen Smith, from Community Circles, might facilitate our next review.  I was really excited about the prospect – I knew about person-centred approaches and I knew that Helen was an experienced facilitator, but I was also a little bit nervous, worrying about how school would respond to the idea of an independent facilitator and whether the people at the review would join in! The school was welcoming and after a little bit of a slow start people did join in!

Henry’s review was just a couple of weeks after I first met Helen so there was a bit of time pressure, and invitations had already been sent and a venue chosen so Henry wasn’t involved in the decision making at this stage. However, in the review itself, Henry was able to choose the music and parsnip crisps were on the table.

Helen arrived with her flip charts and pens and after introductions we (teacher, teaching assistant, nurse, social worker, learning disability advisor, outreach teacher) got to work on what we all liked and admired about Henry.  Using the flip charts that decorated the walls, we wrote about what was important to Henry, what he needed to be safe and happy now and in the future, what was going well and what was not working.  This evidence-gathering phase of the meeting was really important.  What usually happens in meetings with professionals is that I feel that I am a lone voice saying “these things are important to Henry” and feeling as if no one believes me, or worse still, thinks that “these things” are only important to me, not Henry.   In this meeting, lots of people were saying the same things: people are important to Henry, they must be Henry-friendly; working at the lunch club is important to Henry, he volunteers with older people and loves it; knowing what and where things are happening matters to Henry as well as who they are happening with; Henry needs good support to make choices.

When we came to thinking about the future, the evidence gathered at the beginning of the meeting meant that we all knew what the issues were.  While in previous meetings, the social worker had refused to give us an indicative budget with which to plan for Henry leaving full time education, in this meeting it was agreed that this should be prioritized at a meeting in January with a decision-maker from adult social care present.  We went into the meeting with one option on the table for when Henry left school – three days at college and two days self directed support – but came out with the option of five days self-directed support and buying in college if that was what Henry wanted. Amazingly, we’d stopped going round in circles and were suddenly moving forward.

How did this happen?  I firmly believe that this sort of progress could not have happened without an independent facilitator.  Helen questioned, brought the conversation back to the issue, and, above all, kept Henry at the centre.  She organized action points and the follow-up meetings. Her independence was crucial; she wasn’t on ‘my side’ or the ‘professionals’’ side – she was there to do the best for Henry and, to be completely honest, doing the best for Henry meant, at one point, keeping me quiet!

We will meet again in January to take forward the transition issues.  In the meantime, Helen will approach a couple of people to be circle members and we will have the first circle meeting itself in February.

Above all, I feel that I am no longer a lone voice – a team is coming together who will keep Henry at the centre to advocate for the support he needs. And so, ironically perhaps, it seems that having a circle means that we are no longer going round in circles!

* Names have been changed to protect anonymity.

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