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.
