Winterbourne View Time for Change

The Bubb report, WINTERBOURNE VIEW – TIME FOR CHANGE Transforming the commissioning of services for people with learning disabilities and/or autism, is published today. It started as a conversation from which many people with learning disabilities and self-advocacy organisations were concerned they would be excluded. The last thing which was needed three years on from the Winterbourne View abuse scandal, was another discussion amongst professionals about how they should improve.

Social care policy moves in mysterious ways though. It became clear early on in the process that Sir Stephen and his committee were genuinely keen to engage with the views of people with learning disabilities and to take those often radical views seriously. People with learning disabilities have helped the committee to come up with some of the clearest and strongest proposals for real change since Winterbourne. In doing so they have taught us why every planning process about the learning disability sector needs their voices. Groups exclusively of professionals who do not themselves have learning disabilities have a tendency to conduct conversations about ‘difficult’ issues like the persistence of the broken and at times damaging or even fatal Assessment and Treatment Centre (ATU) model, with too much focus on the unwritten etiquette of ‘professionalism’.

We are mostly polite to each other and avoid arguments. We are loathe to suggest things that involve our fellow professionals losing face, status or their jobs. We are inclined to forgive failure, in case it’s us screwing up next time. Conversations about ATU involving professionals with learning disabilities from CHANGE and other organisations were different. People talked about their own lives and their friends’ lives. They were polite but they were clear that they were there to achieve change and that change was something you could see, time and challenge. If people made vague noises about things being important, they pressed harder for actions with names and dates attached. At times they were upset and their stories were upsetting. Surprisingly, they were rarely angry, although they had the right to be.

Sir Stephen and his group had the humility to embark on a steep learning curve around co-production with people with learning disabilities. In return, they got a better report, which recognises, for instance, that we need a closure programme just as much as an improvement programme. People with learning disabilities were also clear that they expect to be involved in decisions and to be employed in peer support, advocacy, inspection and planning roles. NHS England CEO, Simon Stevens, and other senior leaders have already met with them to explore how to employ more people with learning disabilities in NHS roles.

We support the view that we need to see closures, not just improvement of a broken and outdated model of care. The Shared Lives community can demonstrate that people with learning disabilities who are considered ‘challenging’ by some services, can often live safely and well in ordinary family homes, at a fraction of the cost of low-outcome institutional care. We are all less challenging when we are living well with people who love us. And exactly what is the ‘appropriate’ reaction to finding yourself incarcerated, without having committed a crime, in a place you hate?

Shared Lives will not be for everyone, but it is one of several tried and trusted community-based support models which everyone should be offered.

 

What if this was me?

Sir Stephen Bubb caused something of a storm when he first blogged that he had been invited by NHSE CEO Simon Stevens to convene a committee to make recommendations about commissioning new kinds of care for people with learning disabilities who are currently poorly served by ‘special hospitals’ or ‘assessment and treatment units’ of the kind seen in the Winterbourne View abuse scandal. Bubb subsequently recognised he had struck the wrong tone and subsequently made tangible attempts to engage with people with learning disabilities, including representatives of the 100 people with learning disabilities who gathered with CHANGE in Leeds, who then took their recommendations to a summit in the Autumn. Simon Stevens called those recommendations the clearest and strongest policy document he’d read thus far in his new roles and I think Sir Stephen and his committee recognised their strength as well. I had the privilege of co-working with Shaun from CHANGE as he facilitated and presented on rights at one of the committee’s meetings and the committee has said it will focus on stronger rights as being inseparable from stronger systems or commissioning.

So it is a report which didn’t have the most auspicious beginnings, and which is hardly the first attempt to make recommendations for change, after three years of well-intended work by good people, which has nevertheless failed to make any impact upon the numbers of people being admitted to institutions. But it’s a report which I believe may well make some more radical recommendations than many which have preceded it. This may be because we have had an ‘Improvement Programme’ when what many have been calling for is a closure programme.

The people with learning disabilities were certainly clear that they were calling for closure of all institutions. Shaun works on closure programmes in Easter Europe and told the committee in no uncertain terms that in his experience of being a professional who has a learning disability, it was easier to be taken seriously as a colleague and a leader in Eastern Europe, despite their recent history of institutionalisation, than the UK.

The issue of closure is fraught with risk though. What if the institutions closed and there was nowhere suitable for people to go. The long-stay hospital closure programmes of the ‘90s swept away a large number of outdated buildings, but some people felt abandoned, or found themselves living in care which felt institutional despite the smaller building. There will always be people with learning disabilities who have mental health problems, and in some cases they will need to be admitted to hospital. Two points I’ve heard recently at events have seemed to me to offer a useful way of thinking about this issue.

The first is that people with learning disabilities are, sadly