As an increasingly grumpy Tim Keilty approaches his 50s, he is confident that he knows what good support is but is less sure about the plethora of models used to badge it.

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Sweet something: does learning to make honey to sell at Green Beans Market require “person-centred, active support” or some YouTube videos?

Photo Tim Keilty

I am nearly 50. Yesterday I got a letter through the door for SunLife’s over-50s life insurance.

In my 20s, I wanted to change the world, in my 30s I would have settled for changing the system of social care, in my 40s, I attempted to see if I could change an organisation, here’s to my 50s…

Very disrespectfully during my 20s, two colleagues and I used to make gentle fun of a social worker (behind his back) who at the time was probably in his late 40s.

We used to call him the Fonz. He was a good social worker, probably brilliant, but had the audacity not to unthinkingly accept our new way, which at the time was person-centred planning.

He had the essence of what we were saying (or preaching) but did not use quite the same language, so he was not allowed on our team.

Now I am the Fonz. I am grumpy, unflinching and there’s no space in my head for new things. I hope the 20-year-olds now aren’t too harsh on me.
Anyway, recently, I’ve told a few stories about my work and people have been kind – but then tried to badge my story with their stamp.

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Stubbornly alone

There’s a man I support who lives stubbornly and perilously alone in his bungalow, hates support and barely tolerates me.

As a good support worker, I’ve made it my business to know what’s going on and know people where he lives, I’ve rung the police about his dodgy neighbours and fostered relationships with the ones who look out for him. I’ve been in the shops with him and talked to shop workers.

In lockdown, he did not get cash as usual but vouchers for a supermarket. This meant he couldn’t go to the paper shop, which he does every day. The newsagent rang me, worried as they hadn’t seen him.

We now use his support money to pay his paper bill monthly. He is seen every day by someone who cares enough to make a phone call.

People respond to this story by saying: “That’s just like ABCD!”, “That’s ISFs” or “That’s just like my story of my support-community-centred-person-development-matrix-relational-model.”

Or is it just good support?

Full of beans

For ages at work, we’ve been trying to get involved with what’s going on in our town. We have tried to be nosy and helpful, not jump in with solutions but wait to find out what needs to be done and what people need help with.

The hope is that people we support can show or find their purpose and make their contribution.

Recently, we resurrected the Green Beans Market, a community market at our railway station, something that needed to be done.

At the market, we sold honey we had made after meeting a beekeeper at the community garden who loves keeping bees but doesn’t like the messy and time-consuming task of honey production.

Now people tell me: “That’s like the market-approach-to-making-community-centred-planning-happen”, “that’s adding social value”, “that’s local area coordination”, “that’s blah blah” etc.

They ask: “Which models and approaches did you use to support people to do the honey? Person-centred active support? Systematic instruction?”
We just watched YouTube videos.

What’s the difference?

So we are trying to do good support. I’m not dismissing any of the models and approaches – in fact I’d fight to the death to defend them.

But there is a danger we alienate people by badging models up when organising our conferences and sniping from our dugouts. There’s not a great deal between any of them.

My personal “model” is a distillation of all the stuff I’ve heard and read over the years, first summed up by advocates of inclusion John and Connie Lyle O’Brien, Jack Pearpoint and Lynda Khan: “Listen deeply, search for capacities, seek connections, be open to yes.”

The brilliant work of Simon Duffy is crudely summarised by me as: “Give people control of the money and let them crack on.”

And a great question from Richard Orr at Inclusion WA in Australia sums up what I try to do when figuring out how to support people: “How can we be most helpful in your life?”

I hope people won’t reply: ”That’s just like the questions/model/thinking in…”

I think Wolf Wolfensberger, the great theorist of disability policy and practice, said something like “there will never be a unified movement of devalued groups because they all devalue each other too much”.

As the Fonz would say: “Exactamundo.”

As I morph in to the Fonz, I’m worried that there’ll never be a unified way of changing the world because they all have a slightly better way to do it. n

Tim Keilty is special projects manager at New Prospects Association in the north east, a fellow of the Centre for Welfare Reform and of Citizen Network, and a paid supporter representative for Learning Disability England.

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Special needs education separates children from peers, leads to limited adult lives and will persist as long as those with cognitive impairment are seen as not fully human, argues Chris Goodey.

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Special and set apart: many disability charities and adult advocates do not call for inclusive education.

Photo Christy Lawrance

One hundred and twenty thousand people with learning disabilities  in this country are still being placed in segregated institutions. A huge overestimate? 

Not if children are people. Not if the institutions concerned are schools. And not if the word for segregated is “special”.

The Valuing People policy of inclusion and ordinary lives, now (in theory) acceptable for the adult 70% of people, is still being denied to the younger remainder who are in special schools. And segregated childhoods lead to restricted adult lives.

The Children and Families Act 2014 makes a presumption in favour of inclusive education, saying it is a matter of parental choice. These are weasel words. Are you in any position to have your choice accepted?

The government has tendered for new segregated schools. Most ordinary schools are resistant to taking children with learning disabilities. Most local authorities are indifferent. An equality tribunal will usually support you for an ordinary school place – if you get that far. Mostly, you won’t.

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The top rank of civil servants and politicians is awash with people who, being privately educated themselves, went to segregated schools that denied them access to normal role models. In my experience of lobbying such people, they are laughing inside at the absurdity of the idea of these children being in mainstream classes.

If this is so, it is out of sheer ignorance. In the occasional school or classroom where it does happen, it happens easily.

“Surely it needs planning.” So does cooking an egg. “Surely there must be some children who it won’t suit.” Then the system is not inclusive. “Surely such a big overall change needs to be phased in.” Then it won’t happen.

Teachers given a lead have been fine with year 11 classes where young people who are going on to become doctors or psychologists are educated alongside someone with severe learning disabilities.

At the root here is often just the grit of an individual parent, the understanding of an occasional headteacher or affirmative action from an isolated local authority.

Your chance of being in a segregated school if you live in Torbay, Devon, is an astonishing 11 times more than if you live in the borough of Newham in east London. If one can do it, they all can.

Authorities are funded across the board for special needs and can allocate this money how they like. They are also legally in control of special needs provision in their local free schools and academies.

So: no excuses. The problem is at the top: lack of leadership. Doing it is not hard. Wanting it is.

Where might pressure come from? Pressure groups about inclusive education deal with all disabilities and other inequalities generally. This is understandable but a general learning disability policy is of no help since, in practice, people with learning disabilities are last in the queue.

Why is this? Because the prevailing view is that cognitive ability is what makes us human so, unconsciously, their full humanity is not accepted – even, sometimes, by other disability activists and advocates.

When the Equality and Human Rights Commission endorsed the inclusive education clause in the United Nations’ Declaration on the Rights of the Disabled Person, it added a rider: for children “with very severe learning disabilities this is neither possible nor appropriate”. Yet the United Nations defines “rights” as inherent in being human. Put two and two together.

The big organisations – Mencap, the Down’s Syndrome Association, the Council for Disabled Children, IPSEA (Independent Provider of Special Education Advice) – bottle out, afraid of antagonising parents already in the system.

The fact is, however, that most parents do not favour segregated schools. At best, such schools may be sort of all right. At worst, they are neglectful or even abusive.

It is no fault of parents that they are unaware of the possibilities.

Hostility to parents

Parents who get as far as the door of an ordinary school will meet hostile school managers. Who wants that when from your child’s birth you have been sensitised to the negative attitudes of professionals, such as the paediatrician who gave you the diagnosis? If parents were offered a local school where inclusion worked, how many would refuse it?

Even adult advocates seem reluctant to engage with inclusive education. Why? Because we are all reluctant to see children as complete human beings – all children, not just those with disabilities.

Psychologists have foisted the idea of “developmental stages” on us. Young children who have not yet reached them and adults who never will are seen as equivalent. Development is not the only way of describing human beings. It is not a science. Our ancestors got by without the idea. We will get nowhere until we recognise that children – children in general – are people.

A new learning disability policy is needed. But it must run from 0-99. Otherwise, there is no point. “Ordinary lives” means ordinary schools.

Chris Goodey has a daughter with severe learning disabilities and writes about the history of ableist attitudes. twitter: @cfgoodey

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Richard Handley, who died in supported living in the care of a not-for-profit organisations – Photo Sheila Handley

As it does with many readers, the death of Connor Sparrowhawk in 2013 will be forever imprinted on my mind.

I followed Connor’s mother, Sara Ryan, on Twitter at the time and watched in horror as she documented Connor’s worsening mental health, the family’s need for help from local services, his admission to an assessment and treatment unit (ATU) and his death from drowning in a bath after being there for 107 days.

Connor’s family’s refusal to accept that it was simply a tragic accident and their subsequent battle to seek truth and accountability opened my eyes to how institutions and those who work within them operate after a death.

Despite this realisation, in my thinking this was about the response of a faceless, careless and bureaucratic organisation – in this case, Southern Health.

I also followed the search for truth and justice by the family of Nico Reed after his death in the care of Southern Health not long before Connor’s death. The organisation’s denials and lack of accountability were breathtaking in both cases.

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An independent report into deaths in Southern Health over a four-year period looked at 1,454 deaths in mental health services and, of those, 772 were unexpected deaths of people with learning disabilities. Fewer than 1% of all deaths of people with learning disabilities were investigated (Mazars, 2015).
When this report was published in December 2015, for the first time in my memory, the deaths of people with learning disabilities were being discussed on prime-time television.

I naively thought that things had to change for the better but, despite the media and political attention paid to such deaths in recent years, avoidable deaths of people with learning disabilities remain stubbornly high. They are still three times more likely to die a preventable death than the rest of the population.

I also naively thought this was just about institutional services. ATUs were the kind of services I was (and still am) working hard to eradicate in favour of local, person-centred support.

The approach I have been working on for years – supported living – is supposed to be about building everything around what an individual needs. It provides support in people’s own homes, close to families and friends.

How can organisations end up doing the sort of things they have vociferously campaigned against for many years?

I had always believed that this kind of community support would naturally protect people with learning disabilities from poor care.

Learning from Rosie Tozer (2021) about the death of her son Danny in September 2015 was a particularly eye-opening moment for me.

What she described as poor care, denial and a lack of accountability was not in this case coming from a large institutional provider but was about supported living from an organisation I’d long respected, Mencap.

Mencap is not only a care provider – it is the biggest and most influential learning disability charity in the UK. It facilitates the All-Party Parliamentary Group on Learning Disability and has the ear of politicians, policymakers and the media.

Mencap’s best and most effective campaign in my opinion was Death by Indifference (Mencap, 2021). It was the first to raise the issue of preventable deaths and question the value in which people with learning disabilities are held by health services and professionals.

Mencap, like many not-for-profit organisations who support people with learning disabilities, has done many good things, provides many good services and is an organisation that, rightly, has a place in the hearts of many people.

So how can organisations like this end up doing the sort of things they have vociferously campaigned against for many years? If young, healthy people die in their care, organisations with good values have an opportunity to understand how this situation has come about. Identifying how this can happen is key to finding out what is needed to prevent such deaths.

Richard Handley died in 2012 from constipation in the care of United Response, another not-for-profit support organisation.

He lived in a supported living arrangement and, like others who have died prematurely, suffered from a lack of care and rigour in his support that led him to die from something no one should die from in this day and age.

After the inquest, United Response set out how it changed as a result of his death (United Response, 2018). Southern Health commissioned a review into Connor’s death that found it was preventable (Verita, 2014).

Sadly, Mencap did not follow the basic course of action required when there is a question about a death in care but instead worked to reduce the scope of the inquest.

Interviewed by the BBC after the inquest, a Mencap representative, when asked “Are you proud of the service that has been described during the inquest?” replied “Yes” (BBC Breakfast, 2018).

In the same BBC report, Derek Lewis, the chair of Mencap, stated “the quality of care was of a very high standard”.

However, the Mencap York domiciliary care service, which included the home where Danny lived, was rated as requiring improvement in all areas in a Care Quality Commission inspection report published in March 2016 shortly after his death.

Mencap relied on the coroner’s verdict to determine their responsibility and action around his death, although the scope of the inquest had been limited at their request.

There is also a strong case that inquests in general do not take into account the wider issues surrounding deaths in care and rarely have a finding of neglect, even if it can be argued that the person who died was neglected.

Of course, Mencap is not alone in how it responded to such an incident. Being prosecuted is a fear for health and social care providers, even if in practice it rarely happens.

Don’t apologise, say lawyers

I have asked providers why they would not just put their hands up and say “we got it wrong” and apologise – the response was that their lawyers would not allow it.

Reputation, I’m sure, plays a big part in how health and care providers respond. Mencap has a lot at stake when it comes to reputation.

It described itself until recently as the “voice of learning disability” and admitting to getting things wrong can put that proclamation into question.

This was evident in the BBC questioning of the Mencap chair after Danny’s death, where it was pointed out that national disability charity Scope had decided to end all service provision because of precisely this conflict of interest between campaigning and service provision.

I would suggest that refusing to engage with accusations that cause reputational harm is one thing that harms reputations.

Most importantly, evasive behaviours and tactics can stop us from understanding what we need to do to prevent deaths of people with learning disabilities in the first place.

Dying to Matter is an initiative by journalist Katharine Quarmby and myself to unpick what happens surrounding an individual death in care, or an issue such as support for people with epilepsy that means people with learning disabilities are dying preventable deaths. It aims to hear a range of perspectives that help us understand more fully, and to move away from blame and towards understanding.

Our first investigation is into the death of Danny Tozer and the story so far can be found on the Dying to Matter website (Quarmby, 2021).

Good practice: your help is appreciated

Please get in touch if you can help Dying to Matter with these questions – we are keen to hear your stories and identify good practice.

Providers: What are you doing to listen to the concerns of the people you support and their families?

Providers and law practitioners: we would like to hear about how the issue of not apologising to families after a death can be resolved without fear of legal repercussions.

www.dyingtomatter.org.uk

I would say our main learning to date is that sometimes the truth of what happened will never be found. Varying accounts and poor memories mean getting to the bottom of what happened will not happen unless a key witness or witnesses come forward.

The Tozers said that their concerns about the quality of care were ignored, and this is a regular theme that comes up after a death in care. Simply listening to the concerns of families and acting on them will go a long way in preventing deaths, but that is easier said than done.

I had always believed that this kind of community support would naturally protect people from poor care

What are you doing in your organisation to listen to the concerns of the people you support and their families? Please tell us about it at Dying to Matter. We are keen to identify good practice.

Another issue is commissioners continuing to pay for poor care. In the past decade, we have watched local authority funding reduce and the good practice built up in commissioning under Valuing People decline.

Funding for social care has been massively problematic for providers and we cannot ignore the fact that this will contribute to poor care.

The culture of an organisation is central to how it works to prevent deaths and to how it responds after a person has died in their care.

Just looking through press statements after a death tells us a lot about the culture of the organisation.

“Mr and Mrs Tozer felt that at times Mencap fell short of the high standards which we set ourselves” (Mencap, 2018) can sound like a standard deflection of responsibility by an organisation after a death or serious injury.

It could make a huge difference if organisations just accepted that responsibility and said: “We fell short of the standards we set ourselves.”

The other lesson is that the importance of a genuine, heartfelt apology to the family when something goes wrong cannot be underestimated. Leaving a family in limbo until an apology comes – if it ever does – is cruel. We have got to find a way for organisations to be human in these difficult situations.
We’d like to hear from care providers and legal people on how this issue can be resolved legally. Does it really matter if an organisation is prosecuted for failures? Is holding back something so profoundly important as an apology worth it to avoid prosecution? Tell us your stories please.

Finally, we want Dying to Matter to be a place where families can share a memorial of their relative with a learning disability and we can celebrate their lives. Please send us details in the link on our website at http://dyingtomatter.org.uk/uncategorised/post-a-memorial.

References

• BBC Breakfast. Mencap report and interview. 1 May 2018. https://youtu.be/0ma8lFEJC0E
• Care Quality Commission. Mencap York domiciliary care. Inspection report. 2016. https://tinyurl.com/yeu6x6p8
• Mazars. Independent review of deaths of people with a learning disability or mental health problem in contact with Southern Health NHS Foundation Trust April 2011 to March 2015. 2015: 10. https://tinyurl.com/bm6f6pxx
• Mencap. Death by indifference: 74 deaths and counting. A progress report 5 years on. 2012. https://tinyurl.com/4swx6azu
• Mencap. Daniel Tozer inquest. Press release. 26 April 2018. https://tinyurl.com/3bp9bcz8
• United Response. How Richard Handley’s death has changed United Response. 2018. https://tinyurl.com/5rtartep
• Quarmby K. Danny Tozer – a preventable death? Dying to Matter. 2021. https://tinyurl.com/2p9zd2mc
• Tozer K. “We felt our concerns would now be believed. We did not anticipate the inertia and lack of responsibility.” Community Living. 2021; 35(2):22-23. https://tinyurl.com/3rv67dzp
• Verita. Independent investigation into the death of CS. 2014. https://tinyurl.com/3n8xfdye

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In the past, if you were born into privilege, you lived your whole life in privilege, no matter how bad or lazy a person you might be.

If you were born poor, on the whole you stayed poor, notwithstanding how bright and hardworking you were.

But now we live, we are often reminded, in something called a meritocracy. This is a modern, democratic society in which people can flourish on merit.

Merit comprises a combination of intelligence, talent and willingness to work hard. Those born into humble circumstances can, on the strength of their merit, rise in society.

On the other side of the coin, an individual born into wealth and advantage can slide down the social scale if they lack or fail to apply sufficient merit.

In the past, it was the accident of your birth rather than any talent or intelligence you might have that mattered. In modern societies, with universal education, equal opportunities and equal rights, no entrenched privilege can stand in the way of succeeding on merit.

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Meritocracies have been praised by Tony Blair, Bill Clinton, Theresa May,

Hilary Clinton and Barak Obama among many others.

In 2016, May stated: “I want Britain to be the world’s great meritocracy.” In the same year, Hilary Clinton said of American society: “I want this to be a true meritocracy. I’m tired of inequality. I want people to feel like they can get ahead if they work for it.”

So far, so great. Who wants to argue against the idea of a society in which merit wins through, rather than inherited wealth and privilege?

Satirical origin

Yet what each of these leaders failed to realise was that the word meritocracy was invented for satirical reasons by British sociologist Michel Young in his 1958 book The Rise of the Meritocracy.

The book imagined a Britain in 2034 (then 76 years distant) where unrest is stirring among the uneducated classes (many of them in northern and Midlands towns) against the elite, intellectually gifted class. The revolt is led by the Popular Party.

Young saw two problems in a society ruled by the idea of merit, which means in effect that power resides with those deemed most intelligent.
First, a society based on intellectual merit alone simply creates a new, equally unjust class system to replace the old one, which oppresses the uneducated or “intellectually dull”, who become the lowest social class.

He referred to intellectually gifted people as members of the “lucky sperm club”, no more entitled to automatic privilege than the children of aristocrats.
Second, the new meritocracy will contain within it the seeds of the old system of privilege.

Those from families that gained privilege in the past will find ways of coming out on top in the new society.

Think of wealthy parents who game the system to get their children into top private schools, elite universities and the professions.

Indeed, Young foresaw the new system of merit would be worse than the old one because those who succeeded in it through privilege would delude themselves that they had succeeded through merit, and would therefore have an overweening sense of entitlement and self-worth. We can all probably name a few.

A slew of recent books have taken up a position against meritocracy – until recently seen as an unarguably good way of organising society – and made the point that many of Young’s predictions are coming true.

These include Michael Sandel’s The Tyranny of Merit and David Goodhart’s Head Hand Heart, both published in 2020.

However seductively just and fair the idea of a meritocracy might seem, it has deep roots in eugenicist thinking

Sandel has argued that not only have the already privileged been quick to learn how to play the system and entrench their privilege, but also those who do not succeed in life or feel that they have not succeeded come to see themselves as failures and, worse, personally responsible for failing.

It’s your fault

If you are told by Barak Obama or Bill Clinton that you will get ahead if you are smart and work hard enough and you then fall behind, what does that say
about you?

Goodhart has argued that we attach disproportionate importance to jobs that require intellectual abilities (head), and look down on and disparage work that involves manual labour (hand) or caring skills (heart).

Both argue that all this has caused the resentment among many working-class people, who have been influential in the election of populist leaders such as Donald Trump in the US and the outcomes of the Brexit referendum in the UK followed by the 2019 election.

Brexitland, an analysis of voting patterns in the 2016 referendum by political scientists Maria Sobolewska and Robert Ford, revealed that the most significant divide between Remain and Leave voters was between graduates and those who had left school without going on to higher education.

As Labour shadow minister Lisa Nandy has commented, this led to the conclusion by many of the well-educated people who voted for Remain that people who voted to leave “were just too stupid to understand the question”. This, in Nandy’s words, quoted in Sebastian Payne’s book Broken Heartlands, “is deeply offensive and completely wrong”.

Young’s 1950s imagined vision of a revolt against the educated elite led by the Popular Party and located in working-class areas has started to seem eerily farsighted.

Ultimate outsiders

What none of these writers or commentators has noted or probably even been aware of is that there is an intimate relationship between the idea of a meritocracy and the historical devaluation of people with learning disabilities.

However seductively just and fair the idea of a meritocracy might seem when we first encounter it, it has deep roots in eugenicist thinking.

In a meritocracy, people with learning disabilities are by definition the ultimate outsiders because they lack the very thing – our idea of intelligence – that enables you to have any form of status or foothold in society.

If there is a category of person who simply cannot display or acquire what we choose to call merit, then what is their place in a meritocracy? The answer is that there is not even a place at the bottom for them – there is effectively no place at all.

A society based purely on a certain type of brain power creates a new, equally unjust class system

When people with learning disabilities were dispatched to mental deficiency colonies (later mental handicap hospitals) throughout most of the 20th century, where they were expected to linger from childhood to death, the eugenic message was precisely that – there was no conceivable place for them in society.

Because they were considered to lack intelligence, reason, will and all the other things that modern, progressive, technologically sophisticated societies valued, they could not belong. In the eyes of a meritocracy, they were without merit.

Once people with learning disabilities were effectively displaced and removed from society and as their existence began to be forgotten, the eyes of the meritocrats fell on new victims.

Nobel-prize winning physicist George Thomson wrote a book called The Foreseeable Future in 1957, which fretted about “the future of the stupid”.

Those who succeeded would delude themselves they did so through merit, and have an overweening sense of self-worth. We can all name a few

With growing mechanisation, supermarkets replacing shops and the possibility of artificial intelligence, what jobs could those he called the “definitely stupid man, or even the man of barely average intelligence” do in future?

Maybe, he wondered, they could look after the aged. A new out group was being formed – the least intelligent of those left behind, once the learning disabled had been packed off to institutions and forgotten about.

These attitudes have survived and fuel many of the resentments that poison our political discourse today.

The wrong intelligence

Our problem is that we prize a particular type of academic intelligence above all else, and we shower rewards on those who are lucky enough to have it. The obverse is that, often unconsciously, we punish those who do not have it.

Of course, we need such intelligence – it gives us many of the great things from the world of science, technology, culture and so on that enhance our lives and which we value and appreciate so much.

However, why confer power, wealth and all the honours that society can offer on those deemed intelligent, while withholding them from everyone else? Why create a situation where only people who are blessed with this form of intelligence feel they truly belong?

There is no link between intelligence and morals. There are plenty of intelligent, highly educated people who are morally deplorable, and plenty of people who would score low on an IQ test and who never read a book who are morally admirable.

So intelligence certainly does not make you a better person, even if it might make you more adept at certain things and fluent and persuasive in your speech.

I didn’t notice any professors of philosophy on the key worker lists. Yet who is given the status and the rewards?

There are many types of intelligence too. As we found during the pandemic, lowly valued technical and practical intelligence and skills kept the world going and saved us all. I didn’t notice any professors of philosophy on the key worker lists. Yet who is given the status and the rewards?

We know that many people deemed unintelligent in an academic sense, including those with learning disabilities, will show far more intelligence in emotional matters, everyday life decisions and understanding of other people than many of the academically gifted.

If we prize only a very narrow, academically defined set of abilities, then we exclude the intelligence and value of whole sectors of society.

A meritocracy in the end is bad for everyone. A society that recognises and values what every human brings to the table, and which does not hand power and reward to a narrow intellectual elite, is a happier, healthier and more harmonious place to live in.

Next time you hear praise for meritocracy, think again.

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