The case for a new ‘Valuing People’ (but not called that)

There was something quite special about the whole Valuing People initiative back in 2001. Two things that made it a seminal moment:

• It was the first national policy developed in partnership with, and clearly listening to, the people it was about (i.e. people with learning disabilities and their families).
• It flipped policy on its head – rather than seeing the role of services as being just to ‘care for’ disabled people, it saw people with learning disabilities as equal citizens and the job of services was to help ensure people had create lives as part of their communities.

It wasn’t perfect (for example, initially it completely missed the issue of hate crime) and what was achieved in the ensuing years was much less than many of us had aspired to. Nonetheless, it created a vibe in the learning disability sector, people and families were genuine partners and things started to change. Underpinned by equality, people were central to decision making, institutions were closed, more people got paid jobs and housing rights, people talked and focused on community outcomes as person centred practice spread.

In 2007, a senior DH official said to me “Learning disabilities has been a priority for six years – it’s time for something else to be the focus”. The idea that you can reverse centuries of societal discrimination in six years with an annual budget of just £4m was a bit of a bizarre concept – but there you had it. Valuing People (a moral policy to reflect on my previous blog) had had its day. Momentum and energy gradually dissipated and in 2010 the new Coalition government deprioritised Valuing People.

Then came Panorama and Winterbourne View. What that showed was appalling, but the hope was that it provided an opportunity to re-energise action to improve the lives of people with learning disabilities. When 86 organisations covering almost every interest group around learning disabilities wrote to then PM David Cameron outlining what should happen, we genuinely believed things could start improving again. Instead, we got Transforming Care.

As I’ve said numerous times, from the outset Transforming Care was addressing the wrong question with the wrong structural approach.

Assessment and treatment bed usage was just a symptom of a wider issue – a service failure (going back to childhood) in listening to what people wanted and needed and helping them have good lives. Closing those beds would only work as part of a wider set of changes that stifled the potential demand for them.
Having Transforming Care led by the NHS was doomed to failure. Local authorities are the lead agency for learning disability and so as the change needed is about life outcomes not just health outcomes, have to lead the necessary change if it is to permanently reduce the demand for beds.

As a result, Transforming Care sucked in many good people who tried to make a difference with it – but never could because it was a flawed programme from the start. I and colleagues at NDTi have played our part in this failure. Faced with the choice of sitting on the side-lines criticising or getting involved to try and make a difference, we have periodically done the latter. Almost always, we have ended up asking ourselves why. Even those elements where we have contributed to some success (like the self-advocate and family involvement in CTRs in the south), are only touching on improving the symptoms rather than addressing the root causes.

The existence of Transforming Care has enabled Government and others to claim to be doing something whilst ignoring the wider Valuing People agenda (it is still official policy after all). As a result, the current picture around learning disabilities includes:

Advocacy support being cut across much of the country – advocacy organisations closing down and some self-advocacy organisations becoming little more than social groups
People with learning disabilities no longer being involved in important decision making both locally and nationally
The number of people with learning disabilities in paid work falling and employment support services being cut
A move back towards larger group homes and away from housing and support where people have clear rights

Three years ago, the DH recognised this and started to develop a new Green Paper to help provide that wider context. Then came Brexit (and yes, it was Brexit because civil servants privately told me the Green Paper had been shelved because all DH resources had to focus on Brexit).

I’ve always thought the most important thing is to listen to people and families. Two months ago I was at an event where their exact words were: “Give us our Valuing People back”. I’m not sure people were wanting the exact words in Valuing People. Rather they were saying they wanted to see a consistent national focus on life outcomes, rights and having the voice of people and families at the centre of decisions – “Nothing About Us Without Us”.

Having a national policy guarantees absolutely nothing. What it can do though, is provide a focus, a banner around which people can rally and a framework against which actions can be judged – particularly if its delivery is then supported by a delivery programme that adheres to the moral imperative of the policy rather than a dubious set of measurable deliverables (such a A&T beds closed).

There is an urgent need for a new national policy and focus on learning disabilities. It may have a great similarity to the old Valuing People, but it needs to be developed and led by a new generation of people and contextualised to where we are today. A shared vision and direction of travel, that everyone is working towards, is essential if the backwards drift of the last few years is to be halted.