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.

After the election: What next ?

The General Election result will, for those fascinated by the intricacies of such events, provide much fertile ground for endless speculations and interpretations.

And there is a risk that these conversations crowd out some important questions as once again the daily media return their gaze to the succession competitions in the Labour and Liberal Democrat parties and the up coming leadership campaign in the Conservative Party (given Cameron’s decision not to seek a ‘third term’).

The important questions which remain after the results were announced last Friday still remain:

What are the immediate consequences of the planned austerity cuts?

Where are the cuts coming to fund the reductions in welfare spending?

Where will the funds come to meet the crisis in the Health Service?

We know that there are planned cuts in public spending and we know that some of these planned cuts have factored into them a failure to keep pace with increases in utility costs.

As a consequences for those managing budgets across the public sector (education, health, social care and all locally provided services) the real reductions in funding are likely to have more impact than has been assumed or expected.

We know too that those responsible for managing local government services are talking about not being able to meet their statutory duties and services. One of the known (but often unappreciated by the wider public) ways in which some social and welfare services are provided at the local level is through the voluntary and community sector. What might appear to be small scale operations (good neighbour schemes or community based mentor or advocate schemes) but have a profound significance for those that use them are at risk in this context. There has been a contradiction throughout the last government’s policy and practice.

On the one hand there was a time when the Cameron-led Conservatives valued the idea of volunteering and the ‘Big Society’ on the other hand the cuts to mainstream services has pushed the provision of some of these services to the voluntary sector. So rather than providing an important added extra based on what might work locally, the Voluntary Sector has found itself looking to provide core services or in some cases through contracting out seeking to win commissions to run them.

There are also questions about those aspects of the last government’s budget which were never quantified. We can anticipate that these will be made explicit sooner rather than later. We might expect that the Government will want to get these cuts announced and implemented within the next three to four years to give themselves a chance of preparing for 2020.

And yet, there is still the impact of these changes at the local level. We can expect that as the cuts result in still further and major reductions in services there is likely to be more campaigning and opposition. One of the unintended consequences (perhaps) of last week is that the political context is ‘clearer and cleaner’ than it was in 2010. The Government no longer has the political advantage of being in coalition (that advantage enabled them to see their partners punished last week) and the opposition (whilst not united at all) might yet begin to articulate a shared critique.

The other potential base from which we might see opposition developing is at the local level. We are moving, I expect, to more direct cuts in services and so those who are local councillors or those who are school governors or members of hospital trusts will find themselves either defending their decisions to cut services or sack staff or they will be joining a broad network of opposition.

It is this period of unpredictability which we need to watch and engage with.

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.

Why changing how public services are run and financed is off the agenda

How public services are funded and how they are run have been two central questions to dominate news and political conversations.

The scale of problems associated with the NHS, from the crisis in A&E to the scandals revealed in the Francis Report in Staffordshire, have all been about money and staffing.

And yet, as the General Election gets closer these two questions are moving into the background. It seems to me that whilst the headlines are all about poor funding and inadequate staffing levels, both of the major parties are not quite sure what the answers are. They would rather the discussion was focussed on the personalities and the gaffes (as much as they say they would rather concentrate on the issues).

We saw last week with the news that the new Greater Manchester body is to be given responsibility (or share it with existing NHS organisations) for all health spending that the major parties were not sure how to react. In a sense it was a counter intuitive response : the Conservatives who are supposed to be sceptical about the way Labour Councils are run, is in fact, transferring millions of pounds and responsibility for a range of services to an overwhelmingly Labour dominated new authority. And Labour, who are supposed to favour greater devolution, found themselves with their national spokesperson on Health being critical of the proposal. And (predictably) the news followed these two apparent contradictions.

I want to suggest that what they tell us is that neither party is clear (or confident) about what to do next.

The funding crises in the public sector is built in for the next five years. Austerity is not over we are about to move into the next phase – Austerity 2.0. The real discussion needs to be about what we are prepared to fund (both the level and the scale of service) and that avoiding either of those two questions does not help the public conversation.

Why listening to what is said is as important as what is not said: Policy lesson one

In the UK back in 2010 whilst the recurring theme was that the then Labour Government had been responsible for the financial crash all the mainstream parties agreed that austerity was a necessary pre-condition for getting the economy straight.

Looking back over the past five years, one of the things which is striking is how consistent that message has been. As we approach the 2015 General Election in May there is still a cross party consensus on the need for austerity. What has changed or where the points of difference between the main parties surfaces is on the scale and pace of the austerity measures.

Why does this matter? And isn’t it common sense that austerity is needed to ‘fix’ things ?

My own view is that on two counts the common sense argument falls:

Count One – we need to be clear about the causes of the Crash in 2007/8 before we can start setting out the remedies. What is interesting about the debate back in 2010 and now is that the consensus is clear: the crisis was not because we were spending too much on education or health or public services more generally, but the actions of the banking and finance sector. Through a range of decisions from sub-prime mortgages to the miss-selling of financial products or the manipulation of interest rates, the banking and finance sector wrecked the economy and the UK Government (along with other governments around the world) bailed out the banking sector. What the parties then and now have difficulty in explaining is how we got from there to here!

Count Two – the consequence of the mainstream consensus is a package of cuts which will go for at least another four years and cuts now in social welfare, education and support to those agencies which work with the most vulnerable.

And so on the issue of Fairness and Equality I have a difficulty with what is being proposed. Why does this matter ? From a policy point of view it matters a lot. The decisions which were made post 2010 and which will be made after 2015 will have a direct impact on the scale, quality and level of social and welfare provision as well as education and training available across the country. These things do matter. They affect us regardless of our needs now because they are about the kind of society we want to live in. Throughout the next few weeks I will explore some of the issues further.