A ‘learning disabilities commissioner’ without a learning disability is a waste of time

Michael Richards, Edge Hill University

Calls to appoint a commissioner to look after the interests of people with learning disabilities have been growing louder since the shocking story of Ian Shaw became national news. Shaw, 34, was diagnosed with terminal cancer last year after spending nine years in secure hospitals where his condition wasn’t spotted. Now there is talk of installing a commissioner to “uphold the rights” of people with learning disabilities. But unless the government plans to give this job to a person who is actually learning disabled, then I believe this would be another dead end. Instead of being left out of the process, people with learning disabilities should be at the heart of the solution.

The calls are being led by Stephen Bubb, who believes a commissioner could be charged with monitoring, and holding to account, all services which look after people with learning disabilities. Bubb authored the 2014 NHS England report – Winterbourne View: Time for Change – which explored the shortcomings in care and support for people with learning disabilities in the UK. The report followed a string of scandals that emerged from Winterbourne View, a publicly-funded private hospital in Gloucestershire.

The scandal there was first exposed in 2011 by an undercover reporter who revealed the psychological and physical abuse people with learning disabilities were facing. The hospital was subsequently shut down. Despite the Care Quality Commission receiving a series of warnings about mistreatment at Winterbourne, the complaints received were never followed up.

Bubb made ten recommendations in his report, including the recommendation that there should be a legal charter of rights for people with learning disabilities and their families. He later suggested that a commissioner would help to “protect and promote” the rights of people with learning disabilities. But if a role for a learning disabilities commissioner was created, would someone with learning disabilities be appointed? Despite there being more than a million people with learning disabilities (although the number is rising and there are many who are not accounted for), it is very unlikely that one of these people would be. Bubb’s report fails to get to grips with the need to take action and make a difference in the lives of people with learning disabilities in order to give them the chance of achieving such a position.

Serious failings in care

And despite the case of Winterbourne being well known, private companies continue to be paid over one billion pounds by the NHS to run mini-hospitals for people with learning disabilities. This despite government policy aiming to reduce them to ensure more people with learning disabilities are instead looked after in their own homes.

Abhorrent crimes are continuing to occur in the delivery of basic care. Earlier this month, a consultant psychiatrist admitted a string of failings over the death of vulnerable teenager Connor Sparrowhawk, who drowned in a bath at an NHS care unit.

In addition, people with learning disabilities face regular physical, mental and sexual abuse, as well as hate crimes. A letter to the Guardian, signed by more than 100 charities, said the shrinking of the welfare state risked leaving individuals cut off from their communities and work.

Not the problem, the solution

While Bubb’s report aims to highlight the challenges people with learning disabilities face, they themselves do not appear to be at the heart of the decision-making that is likely to take place on their behalf. People with learning disabilities do not need a government appointed commissioner. Instead, they need to be in full control of what happens to them.

My own research suggests that people with learning disabilities are not helpless individuals. They are people who are fully engaged with their own lives, who understand how to make choices and have expertise in politics. They are able – when things are made accessible – to fully participate in the decision-making that affects their lives. This indicates that people with learning disabilities are not the problem but the solution.

If a commissioner was to be appointed, it makes sense that someone with learning disabilities should take that role. For example, people with learning disabilities experience health inequalities and have worse health, on average, because of difficulties using the health service. By working harder to listen to the experiences of the learning disabled, a better understanding for health promotion and disability may emerge. In all aspects of life, people with learning disabilities should be making choices, sharing knowledge and participating at every level to ensure that they have control over their own destiny.

The ConversationSo unless the commissioner is learning disabled, I would suggest scrapping the idea completely. They are the experts on what is best for them and how they want to be included in society and they should be closely consulted about any kind of systemic changes. To avoid scandals like Winterbourne, people with learning disabilities should be respected as equal citizens.

Michael Richards, Lecturer in Applied Health and Social Care, Edge Hill University

This article was originally published on The Conversation. Read the original article.

As the TV Election dominates, what are the local issues?

The TV election debate is , as to be expected, shaped and defined by the personalities and the ‘incidents’ as interpreted by the media commentators.

And, of course, the political leaders (to a greater or lesser extent) play up to this.

But at a local level there is another election campaign taking place. It seems to me that whilst the national media tries to filter those campaigns through their lens of the actions and comments (and latest gossip) of the national leaders, they rarely stop to listen to the stories in local communities.

One of the recurring themes, if you spend time and listen to local residents or local leaders, is the growing impact of the cuts.

So at the local or city level of Manchester (where I live) you can observe at least two different sets of experiences co-existing.

One set of experiences is that which I heard about foyer weeks ago when I sat and listened to parents talk about the invaluable support they were receiving from a national charity that works with families and children. Parents described how supported they felt and how much more confident they, and their children, were as a result.

Why is this important in what is being described by the Government as part of the Northern Powerhouse?

It’s important because many of the public services the families might have relied on are being cut.

The often invisible infrastructure of support for local communities is being cut and replaced by a parallel set of services and agencies. This parallel set of agencies are made up of faith groups, voluntary organisations and charities.

From food banks to working with children and families, we can observe a retreat from the network of services that represented an investment in the needs of children at an early stage in their lives. The Sure Start programme is disappearing and the centres closed, or handed over to the voluntary sector. The investment in schools, with a different set of professionals working alongside teachers is being cut back. Over the next five years the scale and pace of these reductions will increase.

It is this different and parallel set of stories which the TV dominated coverage misses.

It also represents lots of different political choices at the local or city hall level across the country. And it’s a set of choices that is not being discussed in detail. To be sure, we are now starting to hear a different conversation – austerity or not.

But how quickly did that get drowned out by who said what and when to the French ambassador, and who leaked what? How soon did the coverage move from the big question to the trivial pursuit questions?

Why we need a different ‘conversation’ before May 7

As the General Election campaign shifts into a different gear – the wall to wall coverage, the on / off TV debates , the post debate analysis and the stage managed events in local high streets for the cameras  – the gap between the politicians and their reference group and the rest of the country will get wider.

The big questions:

  • what was / are the causes of the austerity measures?
  • what has been the immediate impact of the cuts?
  • what is the likely impact over time?

are all ignored and re-framed to meet the particular needs of the mainstream parties.

There are two aspects of this silence or consensus between the parties which should be of concern to all of us.

Firstly, the discussion is almost entirely based on the idea that there is or was no alternative to the austerity measures. The circumstances leading up to the banking crisis of 2007/2008 have been rewritten or reordered. Both mainstream parties shared a view that there should be minimal regulation of the banks. It was a view that was common across the international networks of politicians and financial interests. The Clinton Administration in the US was an enthusiastic supporter of deregulation, as were New Labour and the Conservatives. So there is an important point here: The crisis was not solely New Labour’s nor was it caused by excessive public spending. And as the events of 2007 ( Northern Rock) or 2008 ( Leaman Brothers) slip into the past we are likely to miss-remember what happened and why. 

Secondly , the popular discussion is almost entirely devoid of international comparisons or examples. So that the new Greek Government are presented as unreasonable for wanting to change the deal with the EU, or the demonstrations in Spain are seen as peculiar to  the country rather than illustrative of a different response or a different way of seeing the austerity crisis.

It is this lack of a different conversation which is is of concern. On May 7 in many places there will be local elections too. This is a chance to link the two events. And yet that discussion is not happening. But for a brief moment in the polling station the two will be handed to us to act on. Symbolically we will hold separate ballot papers: one for local councillors and one for the MP. And yet we don’t bring these two together and within a few seconds they are separate again.

How we might link them and what that might mean in framing a different political conversation will be an idea I will return to next week.