Caroline Tomlinson

Peace of mind for your son or daughter with a disability

When disability happens in your family it is like you wake up in a place you never knew existed, a place that many families refer to as 'service land', where things are often done to you rather than with you.  The search for an accurate diagnosis takes over your life, ultimately knowing that if you have a name for what is wrong, this will give you the passport to the support and services that you need.  We have created a system which has put people in competition with each other, because our social care system is neither equitable nor transparent, we have made people dependent on the system, by reinforcing that 'the state knows best', yet we have the biggest population across the western world of people with disabilities or support needs who are likely to outlive their family members, this has never happened on such a huge scale before.   We have over complicated the lives of people with learning disabilities and their families and need to bring people back to ordinary lives, not just the chosen few living extraordinary lives. The time has come for a very different conversation by having policy which really does make a difference in people's front rooms.

Our son, Joe, had contracted meningitis at six-months old which had left him with complex learning disabilities.  Our path was very different to the one we had planned, we had one of two choices - do we sit and wallow in self pity or do we take control, we chose the latter.  The early years were tough but heading towards the dreaded transition phase was going to be the biggest challenge yet.  We were aware it was like heading towards the edge of a cliff, but we didn't know if we would fall into a big black hole or we would be given a parachute and fly off into the adult social care world and everything would be fine.  Our biggest concern was how do we truly create a life for Joe that is worth living and a life that would continue if we were no longer here. Of course we had two other children, but haven't they a right to live a good life too without having to take practical responsibility for their brother?  Peace of mind was all that we wanted.

The main issue for us was not creating a person centred whole life plan, but actually making the plan happen.  We had been planning with Joe for years, but it was like the plan had to fit into the service system, but the service system didn't work well for people like Joe who expressed many challenges. Joe was in a minority, of a minority group of people, he was one of those people the system has struggled with for years.  If we accepted what had always been done, we would get what we have always got - a society that still can't welcome or celebrate difference.  On a personal note we also knew that Joe would become increasingly anxious by the system, which would inevitably lead to his challenges becoming significantly worse and potentially spiralling out of control.

We were willing to play our part - we had no expectations of others having to do it for us, but we needed some real help.  Help in terms of a partnership approach to making fundamental changes happen.  What we needed was a new way of working with families, a way that was much more equal, a way that encouraged people to take more responsibility, a way that indeed helped those who were willing to help themselves.

Partners in Policymaking and associated courses have offered individuals and families an excellent lesson in helping themselves.  The course takes people on a journey of discovery which gets them to look at why things are the way they are.  It gives people the tools to make change happen in their own lives, builds up their confidence and self esteem to influence, make changes and help others in their community.  The course brings the best speakers from across the world and gives a real flavour of what is possible.  There is no doubt that it inspires, motivates and can visibly change the attitudes of the participants to their own families, each other and most importantly themselves.

The course  first started in the UK 1996 which was based on the USA model.  I was privileged enough to be on this first course and for me it gave me the practical tools and help that I needed to do what felt right in my own heart.  The course has helped hundreds of people since, as it has been delivered in various formats across the country and has been funded by many different local authorities.  I'm absolutely convinced had I not had a child with a disability my sense of strength and self efficacy would have never evolved and certainly know that I never really appreciated the saying 'try and try again'.  I also firmly believe that talent is often over-rated, it is how much you want something, how determined you are and how you can't possibly loose that will make you succeed.

My personal example of this was when I had experienced Partners in Policymaking it started me off on a journey, eventually we were fortunate to be the first people in the country to experience how personal budgets worked and then we just started to take off.  The early visioning we had done with person-centred planning on the course was that Joe would have his own house, his own car and would be doing something like a job - yet in my heart as much as it was a goal or dream I didn't believe it would actually come true.  At this time Joe was only eight-years-old and I was only 30, I had just had my third child so perhaps I didn't have a sense of my own mortality or perhaps I simply didn't want to think about it.

How wrong was I - having the taste of something good but also being given the control we started to explore things for ourselves.  Joe could have his own micro-business and start doing something productive all day by contributing to his community.  We set up The Odd Socks Enterprise which quickly evolved into a successful social enterprise providing a useful service to the community.  We understood that for him to have a real quality of life transport was essential and so we got an open insurance policy on his mobility vehicle then his team could go with him anywhere.  The real icing on the cake though came with his ability to own his own home.  Yes we got a mortgage for Joe and he lives in the house next door to us, meaning he can choose who moves in with him and who he moves out, but more importantly no-one can ever kick him out of the property.  Interestingly as I have shared the story with others what I have seen are many people seeing possibility and then go out and grab a piece for themselves.

Last Updated : 20 January 2011. Page Author: Paul Ferguson.