Actions speak louder than words: A response to MP Barbara Keeley’s House of Commons speech ‘In-patient Abuse: Autistic People and People with Learning Disabilities’

Clive Parry, ARC England Director

Following Learning Disability Today’s excellent article Why are we still just talking about in-patient abuse?, written  in response to MP Barbara Keeley’s recent speech in the House of Commons, In-patient Abuse: Autistic People and People with Learning Disabilities, it occurred to me that this question can be understood in two ways;

Firstly, why is it just the abuse of people with learning disabilities that we are talking about?

And secondly, why is it that all we do is talk about this problem?

Why is it just the abuse we talk about?

This question has been in my mind ever since our Research Unit uncovered the scale of the fee rate funding crisis and published our interactive learning disability and autism services fee rate maps. We discovered that 94% of councils are not paying the providers that support people with a learning disability and autistic people fee rates that enable them to pay their staff the National Minimum or National Living Wage.

Clearly, this is not an acceptable state of affairs; the social care trade press have covered our findings in detail but we have found difficulty in gaining wider press and media coverage to help bring the problem to the attention of Government and the general public.

In her speech, Barbara Keeley spoke about the “relentless efforts of journalists, charities and activists”. I would argue that while there are undoubtedly some excellent examples of investigating and reporting issues in social care, the national media narrative predominantly adheres to a one-dimensional view of sector that focusses on care homes and scandals without a clear understanding about how commissioning works.

Care homes are often painted as huge organisations making enormous profits rather than the more nuanced reality that also includes smaller, more ethical providers who offer high quality, person-centred care and are struggling with increasing demands and insufficient funding.

Media coverage of scandals in learning disability and autism support settings is, of course, justified and essential if lessons are truly to be learned. But what lies behind the headlines? What are the underpinning realities in a part of the social care sector that experiences these avoidable neglect and abuse tragedies over and over again?

I think it is vital to be clear here that the vast majority of the people who work with adults and children who have a learning disability, autism or both would never harm or abuse the humans in their care, regardless of how little they feel that society appears to value them and what they do.

Even when you are being paid the lowest rate of pay it is legal to pay anyone to do any job in the UK, it cannot and must not ever be suggested that wage rates are a reason for or an explanation of the abuse scandals that keep happening and will continue to happen until we change the system that is creating the conditions that allow them to happen.

However, can anyone seriously believe that there exists no link at all between the status of the sector, the way society values the people who depend on it and the people who work in it, and some of the appalling treatment that people continue to experience?

Even when staff blow the whistle on poor practice, they are often not listened to. Whorlton Hall whistleblowers eventually had to approach BBC Panorama in order to shed light on the abuse and neglect people were being subjected to. Ofsted failed to intervene at Hesley Group for more than three years despite hundreds of complaints, serious incident notifications and staff whistleblowing reports about conditions at the three homes. But is it surprising that staff aren’t listened to in a sector where they are so clearly undervalued?

If we can accept that under-funding of learning disability and autism services is part of a wider problem, that Ministers and policy-makers are choosing not to value the people who draw on services and the people who work in those services, and that abuse happens within this wider context, perhaps journalists and the national media would then show more interest in not just the consequences of these decisions (the abuse scandals) but also their antecedents.

Here, for absolute clarity, I am saying that how we as a society, view, value, appreciate and celebrate the differences between us and how we view, value, appreciate and celebrate people with a learning disability and autistic people is part of the context within which abuse scandals, which have many other causal factors, happen and will continue to happen.

Families

When Barbara Keeley MP spoke about the “relentless efforts of journalists, charities and activists” she made one major omission; families.

Families and loved ones have done the most to challenge the inertia that is causing 2045 people who could live in homes in their communities to remain in locked settings. It is also the families and loved ones who, alongside the people who are forced to live in institutions that do not meet their needs and which cause them more harm than good, are suffering the most as a result of this inertia.

The families of people with learning disability and autistic people also need to be seen, valued, appreciated and celebrated.

All we do is talk
Turning now to the second question; why is it that all we do is talk about this problem?

We do not have to look far for examples of unfocussed, woolly talk from the Government.

In the very same debate initiated by MP Barbara Keeley, Maria Caulfield, the Parliamentary Under-Secretary of State for Health and Social Care, talks vaguely about her desire for things to be otherwise. She does mention some work that is happening in relation to improving the settings people shouldn’t even be in and something about the Care and Treatment Reviews, all of which one of the Directors I used to work for would call ‘fiddling in the sock drawer’.

Conversely, during the debate Conservative MP Robert Buckland speaks in support of Keeley about the Government’s missed target to reduce the number of people in “mental health detention” by half by March 2024. At current progress, they will not hit that target until 2028.

However, Minister for Social Care Helen Whately in her recent letter to the Care Provider Alliance explains why the Government has no plans (beyond the funding being provided in relation to hospital discharge and the wider social care sector, which usually means older people’s services) to address the unsustainable fee rates that, specifically, learning disability and autism service providers are being paid. Instead, Minister Whately suggests that the responsibility for fixing this rests with councils.

This simply ignores the impact of twelve years of unprecedented cuts to local authority budgets as though that was all someone else’s responsibility.

The choices we make

As we continue to still talk about abuse, we talk as though all of this is just too difficult, as though it is out of our hands in some way and as though there are forces at play over which we have no control.

However, it is important to recognise that we are making choices here and it is time we started to frame the discussion in terms of these choices, because only when we do this will we start to take responsibility for what is happening.

  • In terms of the funding crisis, we are choosing to play pass the parcel with responsibility so that, in the end, no one takes it.
  • In terms of commissioning decisions, we are choosing to allow funding flows to pay for the development and running costs of the wrong settings and services at the expense of community provision.
  • In terms of the Building the Right Support Action Plan, we are choosing to develop complex ineffective and wordy solutions that have little likelihood of ever making a real difference in people’s lives.

When someone higher up in the food chain points to someone lower down in the food chain and says “it’s all their fault”, it will always be the responsibility of the person with the power to fix the problem . This is why I say we are choosing to wring our hands and we are choosing the status quo.

So what do we want? The recent Guardian Opinion article ‘Learning-disabled and autistic people are being neglected and tortured. How much longer?’ by John Harris, father to a 16-year-old son who has autism and learning disabilities, concludes that it boils down to one word: Respect. I am inclined to agree with him. Respect is due for people with learning disabilities and autistic people. Respect is due for the dedicated, creative, caring, hard-working people whose work give those they support choice and control over their lives. Maybe then we will some of this talk being turned into action.