Posted by Steve Scown at 22/09/2015 09:13:53
Few organisations aim to make themselves less necessary. But working with people with learning disabilities and autism, that is most certainly Dimensions’ goal. We support people to be more and more independent, and less and less reliant on us, so it feels slightly odd to be ‘celebrating’ our 40th birthday.
Life is – all of our lives are – unpredictable. Forty years ago, I had no idea that a life in social care awaited me. But many of the people Dimensions now supports were already living in hospitals. Some lived in children’s wards and a life of institutional care lay ahead. Back then very, very few people would have believed they could live in their own home, be part of their local community, have a job and be in a loving relationship.
Well, times change and thank goodness they do. National policy emerged to close hospitals – prompted in part by scandals and national reports. Since then, change has come thick and fast. The agenda has been shaped by many pieces of legislation some of which has been shaped by practice and in my view too rarely by research. Winterbourne View in 2011 brought back memories of watching Silent Minority (If you haven’t seen it – Google it) and reading those reports of long ago. Have we seen the last ever such scandal? As an eternal optimist I’d love to think we had – but I think we must always be on our guard and be aware of just how bad services can be.
Personalisation – the adoption of choice and control as key principles in the life of people with learning disabilities – emerged and by 2004 Dimensions was striving to become a person centred organisation. Through adopting person-centred thinking tools and embedding them into all of our business processes as well as how we support people we have moved much closer to that ambitious goal.
Certainly, the people I helped move out of long stay hospitals 20 years ago have and continue to make fantastic progress. Many are living with less support and are now exercising choices about when they get support to do what and with whom. Some are contributing to their local communities through voluntary jobs, and contributing to wider society by voting in elections. None of this would have been thought possible by any but the most visionary four decades ago.
Great organisations never sit back and rest on their laurels. We want Dimensions to be a considered to be a great organisation. With ambition as one of our core values why wouldn’t we? Our consistent aim is to think about and try to develop better and affordable ways to support more people with more complex needs, ensuring they have choice and control over their lives, whilst aiming to reduce the amount of support they need.
There are many uncertainties facing us. We recognise the risk that commissioners, faced with inadequate funding and increasing demand, may look to old solutions not new. We are facing that uncertain future with anticipation and optimism as we know there will be different and better ways of supporting people – it’s just that we haven’t yet worked out what they are. If we all do likewise, then we won’t be racing to the bottom, we’ll be working towards the sort of future that the people we support want. And in doing so, assuming we’re still necessary in ten years time of course, we’ll have something great to celebrate for our 50th anniversary.
Pictured: Martin and his son Harry on the day they took him to be professionally supported.
Sometimes we need to let go of the ones we love. This can apply in many situations; such as the death of a loved one, a son or daughter leaving home. In my case it was when I took the decision to move my youngest child Harry, then aged seven, to The David Lewis Centre in Cheshire, a residential care home for children and adults with severe epilepsy.
I still have a photograph of him on the day that I drove him to the centre and left him there. Why would I want to leave a photograph on display of what was probably one of the low points of my life?
Even now, some 16 years on, I wonder if I made the right decision. Then sense kicks in and I realise that we are all in a much better place as a result of this decision. The decision was not an easy one, but when I look back at what was taking place and where we are now I know it was right for Harry and the family.
Harry has complex issues, including severe Epilepsy (which we have still not managed to control), severe learning disabilities and is non-verbal. After caring for him at home for the first seven years of his life, my (now ex) wife and I were reduced to being little more than carers living in the same house. Everything revolved around the needs of Harry. We had no time for each other as husband and wife and our other son, who is three years older than Harry, got used to doing activities with only one of us or hearing the standard response of "well it all depends on Harry".
With hindsight, we left it too late before pushing for support from agencies such as Social Services. We gave the appearance of coping and as such were pretty much left to get on with it. Why wouldn't we? We are his parents after all and it is what you do isn't it?
To cut a very long story short, the result of "managing" on our own, was separation and divorce. Not an ideal situation. As parents living in separate houses, Harry and his older brother split their time living with each of us in turn on something of a rota. This arrangement lasted a few months before we were identified by Social Services as a "family in crisis" and we had to look at finding emergency respite care for Harry. That was 16 years ago and, apart form a number of overnight stays, Harry has lived away from home in some form of professional care setting.
Looking back we should have been more forthright in seeking support from other quarters. If we had, well who knows? Life has been something of an emotional roller coaster since then, prefaced by phrases such as: "what if?", "if only", "why didn't we?" and so on. Harry has been supported by Dimensions for the last five years. I see him most weeks and there are still times when I feel a sense of guilt or even failure as a parent that he does not live at home. Then I remind myself that we are all far better off with Harry being cared for by staff who can concentrate on supporting him full time, who are fresh as they are not juggling another role alongside supporting him, and who themselves are supported by a professional organisation like Dimensions. My time with Harry is much more positive as a result.
I don't think you can really ever quite let go of someone you love. But, what you can do is to change how you look at your relationship and focus on the positive aspects of any other arrangement.
I have just decided to sell the family home of 24 years and start afresh with a new house and am starting to de-clutter. Perhaps it is also time to discard the photograph and let go a little bit more? After all, it does not mean that I love Harry any less.