The Institution Test

Four years after the 2011 Winterbourne View abuse scandal, the government is soon to publish its response to the Green Paper on transforming care for people with learning disabilities, whilst I understand NHS England will be publishing updated plans next month as part of its Transforming Care work. Meanwhile, the latest statistics show that the number of people with learning disabilities in hospitals and other institutions remains almost entirely unchanged. Some people left, but just as many were admitted into the vacant beds.

There is anxiety about closing these facilities, but the figures strongly suggest that as long as they exist, with their vacant beds needing filling to ensure that they remain financially viable, people will continue to be referred into them, however much success there is in helping people to leave.

The inertia is embarrassing for government and its partners at a national level. We need a complete rethink of the effectiveness of the ‘sector led improvement’ approach, when it comes to tackling changes which require parts of the established sector to close themselves down. However, the relevant decisions are taken locally, by clinicians and commissioners, and it is unlikely that any of them will be held accountable for the failure to achieve change. How long will we continue to see that lack of progress without concluding that the local decision making structures are the wrong ones, and transfer that money and power elsewhere?

People with learning disabilities were unheard and hidden away in Winterbourne View. They continued to be ignored in the improvement work which followed. Thousands of meetings were held, but most of them without people with learning disabilities and their families. Thousands of pages were produced, most of it gobbledegook to citizens and ignored by the professionals it was intended to guide.

One of the many frustrating aspects of the post Winterbourne work is the ready availability of community-based alternatives such as Shared Lives which help people to live better lives at lower cost, but of which professionals and families remain largely unaware. So what changes should the new plans include, if they want to end five years of failure? Here are five, based on the views I heard in the few meetings which did involve people with learning disabilities and their families:

1. It’s only through people having the chance to see and try out new models that we can challenge entrenched views and fears. We need to invest in a series of peer education programmes for clinicians, parents and people with learning disabilities. For each group, their peers are best placed to help them to see and explore other models. Where people want to try out new models, they need to be able to do so with their current arrangement held open for them in case it doesn’t work. This would all cost money, but there is a strong invest to save case, which would also lend itself to the use of social investment, paid back through the significant medium/long term savings.

2. We need to reward care providers for progress towards independence and penalise lack of progress. The current financial incentives are to keep people in the same expensive dead ends for as long as possible.

3. Money is not unrelated to power. We need to give individuals and families clearer rights to personal (health) budget control and a new right to challenge for control of resources where they and their advocates can put together a plan at the same or lower cost. At present, families are told there’s no resources to help them cope, then when that family care arrangement collapses, suddenly there are thousands of pounds a week for providers. Commissioners should have to demonstrate that they have talked to individuals and families about what they could do with any new money allocated, before committing that spend to institutional care.

4. Commissioners must be obliged to make themselves regularly accountable to local people with learning disability and families, through a new system of local scrutiny boards led by self-advocacy organisations. This would replace (or in some areas enhance) existing Learning disability Partnership Boards with a body with teeth and a new right to challenge commissioners for control of resources (building on the Localism Act which introduced a right to challenge service provision, but not commissioning). These boards could feed in to the national forum, which currently suffers from a lack of consistent local infrastructure upon which to draw.

5 People with learning disabilities from CHANGE and other self-advocacy groups made the observation that small buildings can be institutions too, because it what happens inside the building that matter. We need a new ‘institution test’ for services in this field, which could be carried out by (trained and paid) people with learning disabilities on behalf of care inspectors, CQC. Services should be obliged to demonstrate that they are not institutionalised and actively reducing institutional practice, attitudes and behaviour.

 

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

‘No more talking: we want action!’

I’m just back from holiday and full of cold, so it was both an exciting and head-spinning day on Wednesday, which started with talking to a scarily large audience at a Nesta event (People Helping People – see previous blog) about Shared Lives and social action. At lunchtime I met up with a group of people with learning disabilities from CHANGE (www.change-people.org.uk) who had come to London to share the views from the Voices Choices conference in June. At that event, 100 people with learning disabilities had come together from all over the country, to talk about how to close down institutions for people with learning disabilities an ensure that there are no more scandals like Winterbourne View.

We were preparing for a summit later in the afternoon, hosted by Care Minister Norman Lamb and involving impressive array of leaders, including: NHS England CEO Simon Stevens; Chief Inspector of adult social care, Andrea Sutcliffe; CEO of ACEVO, Sir Stephen Bubb; Chief Nursing Officer, Jane Cummings; Co-chair of the Winterbourne Assurance Group, Gavin Harding MBE and Karen Flood from the National Forum for People with Learning Disabilities.

You can see some of the discussion and pictures from the summit in the #voiceschoices Twitter stream and you can find the four sets of proposals produced by people with learning disabilities on CHANGE’s website. It’s worth reading: Simon Stevens said that in four months of his new job it was the clearest, punchiest policy document he has yet read. Perhaps we should produce all policy documents in easy read first – it’s a great test of whether you really understand what you’re writing and reading….

The session started with some incredibly moving personal experiences from people with learning disabilities. The accounts of poor care, rape, workplace bullying and oppressively inaccessible services were, as one participant put it, shocking but not surprising. But as Karen Flood eloquently pointed out, what was moving was not just the suffering, but how each individual had turned their distressing experience into a powerful force for change. Each ended their presentation with ‘don’t’ call me a service user, I am a professional just like you’ and they were now in roles, including paid jobs, in which they trained people, made decisions and spoke at events here and abroad. Sean from CHANGE and others said that having a paid job meant he had the status and power which professionals had, rather than always being the only unpaid volunteer in a room full of professionals.

There are lots of proposals in the document, but the group had decided that in the limited time, they wanted to focus on proposal two which is about employing people with learning disabilities in making change happen. How many times do you go to a conference about people with learning disabilities and there are hardly any – or even no – people with learning disabilities speaking and leading sessions? How often do committees meet to discuss the services which affect every aspect of people’s lives, without a paid, trained professional with a learning disability there to share their expertise? The people at CHANGE believe that inclusion, participation, co-production are all just words unless people are employed, just like everyone else.

I didn’t do a great job during the part of the session I facilitated of explaining why we were focusing down so specifically on employment as the route to change, given all the other important proposals on the table, but the professionals with learning disabilities demonstrated why