I want to wave goodbye to the "one size fits all" culture.
The reason I became involved with Think Local Act Personal and the National Co-production Advisory Group was because I wanted to be involved with helping services to become more personalised; I want to wave goodbye to the "one size fits all" culture.
My son Alex has a personal budget for his social care support and this has transformed his life and my family's life. Prior to organising our own support, he was squeezed into a service that just didn't help him or the family and was a total waste of money. Although Alex has autism and a learning disability, he is primarily a young 23 year old man with a great sense of humour, a passion for justice and has a real interest in World War 2 - his disability comes second.
My life, my support, my choice: a narrative for person centred coordinated care for children and young people with complex lives aims to help service providers and commissioners to see that person and to recognise that although someone might have a disability, they are an individual first with needs, hopes and aspirations just like you and me.
I really wanted Alex to be in control and to be part of the decisions that were being made about him, but all of the traditional meetings about him excluded him, they didn't make Alex the focus. All of the meetings were in a small office with people I didn't know and they talked about all of the things that Alex couldn't, wouldn't or shouldn't be doing. To be honest they were really depressing and I would often cry at how negative they were about my beautiful son.
One of the biggest changes for Alex and me came when we started to use Person Centred Reviews and meetings, which focus on:
- What we like and admire about Alex
- What is important now
- What is important for the future
- What support and help is needed
- What is working and not working
- Questions to answer/issues we are struggling with
- Actions that need to be taken
A lot of talking needs to be done prior to the meeting. We just sat with Alex and talked to him about the questions that needed to be answered, we asked him what he thought, what he liked and what he didn't like. We got a roll of lining paper and tried to capture what he said in words and drawings; Alex joined in too and did some lovely drawings. We did this at home the night before the meeting. Alex really felt involved and enjoyed it.
Alex was allowed to choose where he felt comfortable to meet, unsurprisingly he chose the kitchen. He was also asked who he wanted to be there: friends, relatives, etc. By doing all this, it meant that this was the first meeting in 13 years for which Alex was actually present.
One of the keys to person centred planning is to make sure that it is meaningful to everyone. The whole meeting is therefore recorded using drawings and words. The review gives people the opportunity to come together to think about what is important to Alex, and what support he wants and needs, and to iron out any problems that Alex feels he has. I was also keen that we should begin to think about Alex's future, which for me was a big black hole! For the first time we focused on what was good about Alex; it was so wonderful to hear what people liked and admired about my son, it brought a tear to my eye but this time for good and positive reasons. I think that one of the most important things about the meetings is that people all join in, because it is a very visual process that is recorded graphically on paper, people can see that they have been heard. Another really important component is the actions sections, each action is written on paper on the wall and we all take responsibility for each action and sign up to them. This makes sure they get done.
Conducting Alex's meetings in this way has made a real difference to Alex's life; instead of feeling let down, anxious and on the side lines, he feels included, listened to and part of a big team - working together to give him the best future possible. In fact, everyone who attended this meeting found it to be a much better, more informative and fun way of conducting meetings and reviews. It was also good to see education, health and social care professionals working together to help gather information to formulate a plan for Alex's future, this plan also helped to develop his support plan for his personal budget. NOW THAT'S SUCCESS! And importantly it ticks all of the boxes that some professionals so desperately need.
So what can you do? Firstly you can read My life, my support, my choice then contact your local authority and draw their attention to it, use it and the stories in it to make changes for you and your family, or the person you work with and lastly believe that things can be different. I saw a quote recently that sums it up "If you want something you have never had, then you've got to do something you've never done."