Author: Sam Sly
A version of this article was first published in Learning Disability Today.
Two things have happened recently that have caused me to reflect. Our first report, Returning Home on the progress of the Beyond Limits project, has been published and I attended and gave a presentation at this year’s In Control Children’s Programme and listened to families, providers and professionals talking about how personalisation is progressing for children with disabilities.
My feelings on the Beyond Limits project progress are bitter-sweet. We have done some incredible work with people and families but naively perhaps I had expected faster progress and that we would have been able to release more people from Institutions by now.
Sadly, despite our efforts out of the three women, who with their families shared their stories in Returning Home only one has been able to return to a home of her own so far. The stalls, barriers and bureaucratic systems in place preventing a return are still as strong now as before Winterbourne, even when ‘every man and his dog’ at all levels of the pecking order become involved. I am starting to believe that this isn’t just about the money and expense, it’s about a whole lot more including politics, power and most sadly the traditional medical model of treatment in these people’s lives still being much stronger and more influential than the social model of personalisation despite the rhetoric. The paradigm shift still seems beyond some people’s abilities.
We have now planned with sixteen people in Specialist Hospitals, we have gone through the tendering process with nine of them and been lucky enough to be chosen by all to support them, but still we only have four people home with two imminent. There are still huge systems failures in place preventing families’ ability to reunite, testing their resilience and preventing people getting back to a life.
Returning Home highlights the initial three major risks that we have faced, and therefore others will face in any other area of the Country trying to change systems and provision for people currently in out of area Specialist Hospitals, post-Winterbourne.
All of the risks are about Leadership and as a partnership between Health Providers, Health Commissioners and originally the Local Authority (they pulled out), we are still struggling with some of these risks. At the end of the day, sadly, it is still the person and their families that suffer from any weakness, lack of clarify and lack of partnership working between multi disciplinary professionals and with budget constraints this is not going to get easier.
The risks are:
- The need to be decisive at the point people are ready to return home (we have people with plans made over 18 months ago that are still being denied release from Hospital because decisions have not been acted on decisively).
- The need to invest decisively in leaders and organisations (some of the systems and processes that have had to be put in place to ensure competitiveness and feed the beast that is the NHS have prevented people moving on quickly, and leaders have not always been able to just get on with things that make sense).
- The need to build a shared strategic understanding (the Local Authority in Plymouth pulled out of the project early on, as they felt they already had personalised systems in place and did not need to be part of this project, this leaves another barrier that people and their families will face in the future when their health needs decrease, which we hope they will, and they require a move to funding by a Local Authority).
Whilst presenting at the conference I reminded people of the theme running through the families’ stories in Returning Home. The theme of being totally let down by services when their relative was in childhood resulting in Institutionalisation at an early age (one girl was in prison at 17).
Families often coped (or got by) when their relative was a child but when situations at home reached crisis point for families, often when the person was reaching teenage years, and they were desperately asking for help the options available were stark and unwelcome; institutions usually starting off near to home, but swiftly moving people further and further away as providers did not cope. And those Institutions are where people remain today.
The conference confirmed to me that there are some amazingly creative people out there starting to plan and making sure children’s lives start on the right footing, but the best plans were often those started and controlled by families with as little professional input as possible. Trish Nicoll and her son talked about how he uses his budget, with his brilliantly matched personal assistant. She has a blue-print put together by friends without disabilities of what they like to do (and not do!) and their hopes and dreams for the future, and she uses this to check her son is having a normal teenage life – what a great idea!
Being personalised in every aspect of your approach is very hard work. It is much easier to do things the traditional way, and I guess that is why some people continue to do so, however when you hear the stories about how people grow and get a life it is all well worth the effort!
The publisher is the Centre for Welfare Reform.
Returning Home © Sam Sly 2013.
All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.