Challenge Newsletter Winter 2016: Looking to the Future

Vivien Cooper, CEO of the Challenging Behaviour Foundation, introduces the Winter Newsletter, on the theme of 'Looking to the Future'! You can download a pdf copy of the newsletter, or read it online. To sign up to the e-newsletter, use the sign-up form on the right of this screen. Order a hard copy by emailing, or calling 01634 838739.


Change - for better and for worse?

Change is inevitable, and we all want positive change – to improve, to develop, to move forward. These changes for good can’t come quick enough. They are opportunities and we are impatient for things to get better. But some types of change are unwanted or disruptive. They can feel like a step backwards, like starting again, going over old ground or round in a circle.

When we started the CBF charity, I naively thought the change that was needed would be straightforward (in simple terms - providing families with good information, understanding behaviour, and putting the support around a person that they needed instead of trying to fit them into something that made things worse). I did not appreciate the extent to which “the system”, which should be there to provide and deliver support, was set up in a way that not only didn’t make this easy, but actively made it difficult.

Whilst policy says all the right things and is focussed on personalisation, in practice, the systems that should be there to facilitate it are yet to deliver for families of children, young people and adults with
severe learning disabilities who display behaviour described as challenging. The change we want to see is a move away from the crisis management approach which I experienced when my son was younger (“go home, and if you get to a point where you can’t cope, get in touch”) – an approach families still experience today – to a situation whereby good information, advice, support and services are offered early and proactively to prevent and minimise behaviour described as challenging and to enable children, young people and adults to experience what most of us take for granted - ordinary life opportunities, such as a family life and good health.

Progress is being made for some people, but these changes seem painfully slow. They are not helped by constant changes within the system – reorganisations take place on a regular basis, which often means that just as you begin to feel confident that someone understands the issues and you will see some progress, they move on and you have to start again. These challenges happen at an individual and a strategic level.

My son does not have an allocated care manager, and a recent emergency meant that one was hastily named. He clearly had not even met my son or me, and told me that he could not confirm whether he will remain involved after the immediate crisis. This constant change is not helpful - it would actually be really helpful to have a professional in this role that knew my son well and understood all the complexities of his support needs.

In the five years since abuse at Winterbourne View was exposed the national Transforming Care team and its leadership have changed regularly. Four different Government Ministers have had responsibility for the work and there has been a completely new Department of Health team. The result is little organisational memory and lots of re-starts.

Some change can’t come quick enough, whilst other changes hinder it. But throughout it all, the lifelong support, advocacy and commitment families provide for their loved ones, as well as their determination to enable them to have a good life, remains constant – there’s no change there.

Vivien Cooper OBE
Chief Executive and Founder of the Challenging Behaviour Foundation

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