Three years after the Winterbourne View abuse scandal was exposed, the lack of change remains depressing. This report from Mencap and the Challenging Behaviour Foundation makes grim but essential reading. In particular, some NHS trusts and clinicians appear to be immune to all efforts to raise their expectations and inspire creativity. The numbers of people with learning disabilities admitted to NHS institutions is actually on the rise. This is far from just an NHS issue, but it’s clear that NHS England and its new CEO need to get serious about their leadership role in addressing what is a worsening scandal. Even if the abuse at Winterbourne View was a rare exception, the deeper scandal was that health and care commissioners and the clinicians which wield such a great amount of power over the lives of people labelled ‘challenging’ felt that spending years locked away from family, community and anything resembling a life was an acceptable long term form of support, not to mention a defensible spend of £5,000 per week.
I’m not sure any sector, including the voluntary sector in which I work, can really hold its head high in the light of three years of inaction. Whilst a lot of the strongest calls for change are coming from charities, self-advocacy groups and grassroots activists like the 107 Days campaigners, not every voluntary sector and rights organisation in this space seems fully focused on building the pragmatic collaboration which is really needed, with small ‘p’ politics and positioning appearing to be an issue in some quarters.
One of the most promising initiatives however is the conference which people with learning disabilities are organising and leading, under the auspices of user-led organisation CHANGE and JK Rowling’s charity, Lumos. It takes place in Leeds on June 26th: Our Voices, Our Choices, Our Freedom! The conference will gather people with learning disabilities together who all share the wish to see institutions for people with learning disabilities finally consigned to history.
The minister, Norman Lamb, will be there, listening and speaking, as will Bill Mumford who leads the Post-Winterbourne View Joint Improvement Partnership. The thing which makes me think this event won’t be ‘the usual’ though is that it is being organised by and for people with learning disabilities, who are coming from all over the country. It’s still not unusual in the sector to see conferences about learning disabilities which fail to have a single speaker with a learning disability involved, let alone in the lead.
The people at CHANGE have a habit of getting you to think differently, in my experience. This is partly because they try to deliver as much of their work as they can through their ‘co-worker’ model in which someone with a learning disability works on equal pay and conditions alongside a non-disabled co-worker. This shouldn’t be unusual but it is: few ‘user-led’ organisations employ people with learning disabilities in paid leadership roles, rather than as volunteers (even organisations whose aims are to help people with learning disabilities find employment!). Usually conference audiences are dominated by managers and commissioners, but at the CHANGE event most people will be people with learning disabilities, with one or two commissioners who have agreed to attend not in their usual capacity, but as supporters of local citizens, whom they will then support to feed back to local leaders afterwards. There are also plans afoot for other ways for participants to spread the messages from the day.
CHANGE believe that increasing assumptions about the need for institutional care will be challenged only through people with learning disabilities taking paid and leadership roles in ‘their’ sector. That has to be right, because if there’s one kind of commissioner or inspector guaranteed to take a dim view of being ‘stuck’ for years in an institution, it would be a commissioner or inspector who has a learning disability.
It’s 2014, people need to start listening.
One reason for teh alck of pragmatic collaboration is that it means different things for different people. For soem, it is a way of utilising the skills of all stakeholders in a co-productive way. For others, it is seen as empire building, and people are scared that their world view may be taken over by those who purport to work with those with disabilities, but in reality, they talk for those with a disability, rather than letting the disabled person talk themselves.