Category Archives: Social care

simon baron-cohen interview

 Simon Baron-Cohen: ‘Brains come in types, and they’re all normal.’ Photograph: Graeme Robertson/The Guardian

I recently interviewed Simon Baron-Cohen, a world-leading expert on autism, for the Guardian.

His latest research reflects the huge gulf between advancements in awareness and research and real, practical improvements to people’s lives.

Such findings from the Cambridge professor and director of the university’s influential Autism Research Centre add more weight to existing evidence about the significant challenges facing autistic people. Diagnosis can take years; children face cuts to special educational needs provisionjust 16% of autistic people had jobs in 2016 (compared with 80% of non-autistic people); and they are among those locked up in secure hospital-style units instead of living in communities. The Autism Act a decade ago obliged the government to create a strategy to improve support, but legislation has fallen short of promises.

Baron-Cohen hopes his centre’s recent findings will encourage better practical help (a lifelong support worker, for example) “so there’s a pathway from discovery in the lab through to changing people’s lives”.  This is crucial because academics are often cricitised for failing to translate knowledge into practice. A 2013 report by the charity Research Autism questioned why studies to look at effective services or to fully involve autistic people. Baron-Cohen says: “The old style of doing research was, without [us] realising it, arrogant, in that the scientists thought up the questions and then did it. The new way is to involve people from the outset… to co-design the studies and check the relevance and wording.”

I also spoke to Baron-Cohen about criticism of and controversy about some of his theories. Notably, his “extreme male brain’ concept, outlined in his provocative book, The Essential Difference. This describes men’s brains being wired for systemising and women’s for empathising. This led to criticisms of “neurosexism” and gender stereotyping which could risk misdiagnosis or under-diagnosis of autistic women.

His theories have also been challenged by autistic people who argue that they fuel the myth that they cannot empathise. Autistic academic Damian Milton, a lecturer at the Tizard Centre, University of Kent, says: “Simon’s a nice guy and knowledgeable in a lot of areas, but the empathising and sympathising theory suggests a lack of cognitive empathy, which many people in the autistic community disagree with.” Milton’s double empathy theory is a critique of Baron-Cohen’s, describing a mutual empathy problem between autistic and non-autistic people.

In response, Baron-Cohen says that with empathy “we need to make sure it’s [moving] two ways”. He stresses that while autistic people may struggle to imagine others’ emotions, they feel emotion if others are upset (the distinction between cognitive and affective empathy).

He says of criticism: “Sometimes I have to spend a lot of time explaining what it is I’m not saying…people just take the headline and think I’m saying autistic people are macho and aggressive.” Baron-Cohen stresses that “equality between the sexes is very important”, adding that his research explores groups of males and females “on average”, adding “this is not about individuals”.

You can read the piece in the Guardian here.

As a disabled Asian woman, I’ve had to fight for my independence

 Gazala Iqbal: ‘The government needs to ask disabled people what they want.’ Photograph: Christopher Thomond/The Guardian

Gazala Iqbal, now 46, was overprotected at home and her sense of dependency was reinforced by patronising attitudes from health and social care professionals. One district nurse told Bradford born and bred Iqbal that she spoke really good English “for an Asian woman”.

Iqbal’s story is echoed in a story I’ve just written. The article is also based on new research by user-led charity Asian People’s Disability Alliance (APDA) into the barriers to independence for disabled Asian women. The report, Humare Avaaz (“our voice” in Urdu), follows 18 months of community research involving 90 women with a physical or learning disability, mental health issues, long-term condition or caring responsibility.

Ignorance of health and social care among families, APDA’s findings suggest, is compounded by professional assumptions. While the authorities are aware of the low or late uptake of services, the report states, they “appear content to presume that this is a choice made by ethnic minority communities”.

There are solutions. Bradford council is embedding a human rights approach into its social work. Over the last two years, the learning disability team has made support more accessible, encouraging engagement with the Asian community.

Read the full story in the Guardian

‘People with learning disabilities must be put at the centre of their care’

Sheila Hollins with her son, Nigel, who is now a Beyond Words adviser and runs one of the Surrey book clubs. Photograph: Martin Godwin/The Guardian

I just did a Guardian interview with Sheila Hollins. The crossbench peer is one of the UK’s foremost authorities on learning disability and mental health but the says her greatest achievement is founding Beyond Words, a pioneering not-for-profit organisation that produces picture books to help people with communication issues. “Beyond Words is what I feel most passionate about because it’s about transforming people’s lives,” she says.

Its origins lie in Hollins’ use of pictures to interact with her son, Nigel, who has a learning disability. “He would roar with laughter at Laurel and Hardy [silent] films but didn’t put a word together till he was eight.” When Nigel was nervous about an adventure holiday, his parents drew pictures depicting activities like abseiling: “When we put things into pictures, he felt more in control.”

Thirty years on, Beyond Words has distributed or sold 100,000 copies of its 57 titles, which cover everything from relationships to surviving abuse. Each title involves 100 learning disabled people as advisers or authors. There are 60 associated book clubs with 350-400 members.

Nigel Hollins, now 47, is a Beyond Words adviser and runs one of the Surrey book clubs. He lives independently in a flat near his family with support from a personal assistant. His mother says: “People see Nigel in the shops, cafe or train station. He has a life in the community.”

Read the full interview in the Guardian

Reports and reviews on repeat

The government’s care watchdog the Care Quality Commission, published an interim report today into the treatment of people wiht learning disabilities and/or autism.

The report calls for a review of how adults, children and young people are locked up, segregated, restrained, far from home (that’s right – a report calling for another report..and today’s publication is just the interim report).

The health secretary’s response is that such cases will be reviewed – so, another report then.

Rather than write another report on this, here are a few headlines from recent pieces I’ve worked on with families and campaigners that tell you all you need to know:

Abuse of learning disabled people won’t stop until we all matter equally

You can’t rehabilitate someone into society when they’re locked away

[eight] years on from Winterbourne, why has nothing changed?

Why is it OK for politicians to ignore people with learning disabilities?

We must stop learning disabled people being dumped in waste bins of life

Why did Connor Sparrowhawk die in a specialist NHS unit?

And on that last question by the way, the campaign #JusticeforLB fought for the answer.

Tomorrow, the BBC will broadcast an expose by Panorama on abuse of people with learning disabilities and autism in secure hospitals.

There is now such a huge amount of evidence going back decades – from media to official goverment reports – about what’s wrong with how our health and social care services support learning disabled and autistic people. And a ton more on what needs to happen.


On Twitter today, #notcomplicated was a popular hashtag among campaigners, showing what’s possible in terms of supporting people well and upholding their human rights. So if I was about to get involved in the next report, review, investigation, guidance, consultation document, toolkit, standard, benchmark, framework or remit for a ‘working group’ (list goes on..) in this area, I’d start right there.

*This post is based on my short Twitter thread earlier today

my ordinary life, A film by Raana salman

        

A five-minute film by Raana Salman

My sister Raana made this film on the theme of community – helped by her brilliant support worker Indra – for sharing at this week’s (Un)Ordinary Conference in London.

The event, held by the campaigning learning disability charity Stay Up Late, was billed as “a learning disabilities conference with a difference” because professionals from the social care sector made up much of the audience and those on the platform had a learning disability and/or autism.

The event explored learning disabled people’s views on community, relationships and employment.

I’ll write about my own thoughts later, but right now I don’t want to put my own filter on what Raana wanted to share – not least because if I did, that filter would spontaneously combust into a zillion radiant pieces of joy.

I am so incredibly proud of my creative, determined sister, a fact that will be obvious to those who’ve supported and been following the progress of the book Raana’s inspired, Made Possible.

What I will add though, for context, is that Raana has fragile x syndrome and in the past she’s found it tricky to do some of the things she does now. And while she’s done public speaking in familiar places with friends and her trusted support staff, it was a huge deal for her to travel up to London for the day and be in a place she’d never been to before with a whole new bunch of people she’d never met.

Raana didn’t fancy making a speech or taking questions, hence the film with captions.

We hope it makes you smile.

‘It’s like the light’s come back on’: connecting people in care homes with their communities

Paul Williams, former champion runner, is now a fledgling public speaker thanks to a new project connecting people who use support services with their local communities (pic: NDTi)

Paul Williams has a learning disability and was once an athlete. Years in institutional care meant he didn’t mention his talent. With the Time to Connect project, which I wrote about in the Guardian today, he dug out his medals, has done a local talk and is now writing his life story.

Williams, his care organisation and volunteer are part of the Time to Connect community inclusion project. This encourages stronger links between people using care services and their neighbourhoods, and ensures they become more active citizens. Time To Connect is a partnership between social inclusion charity NDTi(National Development Team for Inclusion) and Timebanking UK, the national charity that helps people to share time and skills.

So far, Time to Connect has involved 265 people: 92 care staff, 102 older people, 39 learning disabled people, 10 people with mental health support needs and 22 time bank members. An interim reportdescribes positive outcomes for all participants: “The evaluation found numerous examples of increased confidence and motivation among care staff as well as changes to attitudes and behaviour. This is in turn leading to increased opportunities for people to connect with their communities.”

Time to Connect adds value to care work because support staff get a greater glimpse into people’s lives and characters, rather than focusing simply on their physical needs. Clive Brown, Paul’s support worker, says: “It makes the job more rewarding and it improves my relationship with the people I’m working with. It just makes me smile a little more.”

Read the full piece on the Guardian website

Happy Christmas 2018

My youngest sister Raana (left) – cheers and merry Christmas and a happy new year!

Season’s greetings to everyone – this is me with my sister Raana, thanking everyone who’s collaborated on stories, projects and posts this past year – here’s to more of the same in 2019.

Big thanks also to all of you who’ve supported or helped publicise the crowdfunded book I’m editing, Made Possible, about the talents of people with learning disabilities. It’s
partly inspired by my sister, who has the learning disability fragile X syndrome, and aims to shatter the lazy stereotypes we have about learning disability.

There’s been a welcome focus in the media recently on learning disability, thanks largely to the determination of campaigning families, but there’s a huge amount left to do. People are still subjected to inequalities in health, housing, employment and attitudes, 2,350 autistic and learning disabled people are still stuck in “assessment and treatment centres” – despite the government’s long-standing promise to move them into proper housing in communities.

Here’s hoping 2019 will bring more action, instead of just more rhetoric, as I’ve written before, and the people who have to spend the festive break in inpatient care are reunited with their families soon.

Snooker, skiing and smuggling in cider – lessons from a long-stay hospital

A new heritage project aims to dispel misconceptions about learning disability and the lives of people who lived in long-stay institutions. The charity CASBA (Citizen Advocacy South Birmingham Area) spent a year collating stories and archive material relating to Birmingham’s Monyhull Hospital. Myth and rumour about the hospital was rife; it was referred to as the local madhouse and the term ‘Mony’ was used as a playground insult at local schools. In what is Birmingham’s first learning disability heritage project, the free event From Institution to Community, runs on Saturday October 6th.

Guest post by Joe Peacock, heritage project coordinator, CASBA

Roland Clewley was 16 when he was first admitted to Monyhull Hospital, a long-stay institution for people with learning disabilities. It was 1966 and before Monyhull, Roland been in a pupil referral unit in North Wales for 18 months and had grown up in a care home in South Birmingham. He quickly grew to hate being locked up.

Roland spent almost 15 years in institutional care.

Former Monyhull Hosptial resident Roland Clewley today

Roland says: “It was okay at first, but I wanted to get out, you see. I wanted my own place – a flat or something. I said that to them, but they said; ‘They’re all the same, just like you’ so I started running away.”

This was not the easiest thing to do, but he remembers: “I got through the window and then went down the pipes and ran off along the canal. It was dark down there and you couldn’t see what you were doing. We didn’t get very far, then we got picked up by the police. They put us in a van and put us in a cell for a few hours until Monyhull picked us up.”

Such attempts weren’t looked upon kindly by the hospital. Contrary to local myths, there was no alarm that went off when someone ran away, but they were punished on their return. “They put me in a side room. It was like a cell. It was a bare room with just sheets and blankets on the floor to sleep on. The first time, I did a week in there, then the next time two and then three weeks at a time.” He was let out to go to the toilet and to eat, but it was a severe punishment for someone who just wanted his freedom.

He was then sent to a stricter institution called Moss Side: “Terrible, that place was” he recalls; “You were locked in all the time. You could go out in the grounds, but there were walls all the way around – it was like a prison. I was there for nearly eleven years.” In fact, Moss Side was a high security psychiatric hospital and later merged with another similar institution to form Ashworth Hospital. Roland is reluctant to disclose much of his experiences there and it is hard to imagine how tough it would have been for him. Roland was then sent back Monyhull, and it must have been quite a relief in comparison.

“It was a bit better second time – it changed a lot. When we used to be on the ward it was a male ward and you’d have male staff, but the next time I was there it was all mixed – you’d got male and female staff working there.”

He also felt more optimistic that he would be allowed out with the increased emphasis on care in the community and deinstitutionalisation in the 1980s: “What else changed is that they were taking the patients out of there. Before, you don’t know how long you’re there for, or anything like that. I thought I was going to be there until I was about 80.”

He began to be given more responsibilities, helping the physiotherapist to get patients to appointments and was even paid for working with the porters; collecting laundry from the wards. Some of the porters befriended him and they would socialise as well as work together.

He was quite a decent sportsman, too, who won a snooker tournament and has a photograph on his wall of him being presented with the trophy to remember it by. There was a table in his ward and he’d play with anyone who was up for it or just practice on his own. He also played table tennis, football and was keen to try any other activities on offer.

Roland Clewley winning a snooker competition (photo: CASBA)

Perhaps, one of the most surprising things he did, due to his close work with the physiotherapist was to go skiing in Italy. “Went for a week. I kept on standing up when I fell over all the time. You want to do it – it’s a laugh.”

Another way in which he’d try to beat the boredom of institutional life was to sneak off to the local pub, the Cartland Arms. More often, though, he remembers that they would smuggle cans of cider in from a nearby shop and sit in bed drinking those after lights out.

In 1980, he was moved out of the hospital into a hostel and then into a flat where he still lives. Ironically, for a man desperate to escape the hospital, his flat overlooks the site of the former institution he was in. Surprisingly, he continued going back to Monyhull to work with the porters them even after he’d moved out and right up until the time it was closed down and demolished. He retained his income, was fed and had a social life.

Now, in his late 60s, Roland seems happy enough with his life, although when I asked when he’d last been on holiday, he replied that it was 25 years ago. With limited mobility, he must be in danger of becoming more and more isolated.

The biggest shame of his life for me, though, is all those wasted years when he was locked away. With the right support and encouragement, he was capable of doing so much more.

• Joe Peacock is heritage project coordinator at learning disability advocacy charity CASBA
• CASBA’s From Institution to Commununity is at Monyhull Church from 1.30pm on Saturday October 6th and you can watch a trailer about the project here

How a national scandal goes unnoticed

Tomorrow is the seventh anniversary of an event that reflects an enduring national scandal. A long-running scandal that doesn’t trigger public or political outrage.

I’ve written an opinion piece for the Guardian about this today.

On May 31 2011 BBC’s Panorama exposed the abuse of people with learning disabilities at the NHS-funded Winterbourne View assessment and treatment unit (ATU) in Gloucestershire.

There are around 1.5m learning disabled people in the UK, including my sister, Raana. But the general disinterest in learning disability means that tomorrow’s anniversary will not trouble the national consciousness.

Rewind to 2011, and Winterbourne View seemed like a watershed moment. The promise that lessons would be learned was reflected in the government’s official report [pdf], and in its commitment to transfer the 3,500 people in similar institutions across England to community-based care by June 2014. Yet the deadline was missed, and the programme described by the then care minister Norman Lamb, as an “abject failure”.

Since then, various reports and programmes have aimed to prevent another Winterbourne View. These include NHS England’s “transforming care” agenda, which developed new care reviews aimed at reducing ATU admissions.

Yet despite welcome intentions, government figures [pdf] for the end of April 2018 reveal that 2,370 learning disabled or autistic people are still in such hospitals. While 130 people were discharged in April, 105 people were admitted.

This month, an NHS investigation reflected how poor care contributes to the deaths of learning disabled people. It found that 28% die before they reach 50, compared to 5% of the general population.
Unusually, this “world first” report commissioned by NHS England and carried out by Bristol University came without a launch, advance briefing or official comment. It was released on local election results day ahead of a bank holiday. Just before shadow social care minister Barbara Keeley asked in the Commons for a government statement about the report, health secretary Jeremy Hunt left the chamber.

The most recent report was partly a response to the preventable death of 18-year-old Connor Sparrowhawk at a Southern Health NHS Foundation Trust ATU. The Justice for LB (“Laughing Boy” was a nickname) campaign fought relentlessly for accountability, sparking an inquiry into how Southern Health failed to properly investigate the deaths of more than 1,000 patients with learning disabilities or mental health problems. The trust was eventually fined a record £2m following the deaths of Sparrowhawk and another patient, Teresa Colvin.

Recently, other families whose learning disabled relatives have died in state-funded care have launched campaigns, the families of Richard Handley, Danny Tozer and Oliver McGowan to name just three. Andy McCulloch, whose autistic daughter Colette McCulloch died in an NHS-funded private care home in 2016, has said of the Justice for Col campaign: “This is not just for Colette… we’ve come across so many other cases, so many people who’ve lost children, lost relatives”. Typically, the McCullochs are simultaneously fighting and grieving, and forced to crowdfund for legal representation (families do not get legal aid for inquests).

To understand the rinse and repeat cycle means looking further back than 2011’s Winterbourne View. Next year will be 50 years since the 1969 Ely Hospital scandal. In 1981, the documentary Silent Minority exposed the inhumane treatment of people at long-stay hospitals, prompting the then government to, “move many of the residents into group homes”. Sound familiar? These are just two historic examples.

If there is a tipping point, it is thanks to learning disabled campaigners, families, and a handful of supportive human rights lawyers, MPs and social care providers. Grassroots campaigns such as I Am Challenging Behaviour and Rightful Lives are among those shining a light on injustice. Care provider-led campaigns include Certitude’s Treat Me Right, Dimensions’ My GP and Me, Mencap’s Treat Me Well.

Pause for a moment to acknowledge our modern world’s ageing population and rising life expectancy. Now consider the parallel universe of learning disabled people. Here, people get poorer care. Consequently, some die earlier than they should. And their preventable deaths aren’t properly investigated.
You can read the full article here.

Theatre project challenges attitudes to learning disability and autism

“I hope I can get them to think a bit differently, and then to help make things happen a bit differently.”

These are the words of Dayo Koleosho, an actor with the groundbreaking theatre company Access All Areas, describing what he hopes the public will gain from his new show, Madhouse re:exit.

I’ve just written about the project for the Guardian. It’s a show that has been developed and performed by autistic and learning disabled artists and it highlights themes of institutionalisation and isolation, and explores the past, present and future of social care.

The show, which I caught during its London run, opens at the Lowry in Salford on 17 May as part of the Week 53 festival and follows more than two years of research and development.

“As services are cut, people are becoming stuck at home and the isolating walls of institutions are being replaced by people’s bedroom walls,” says Nick Llewellyn, artistic director of Access All Areas. “The walls are still there but [they are] more hidden or societal rather than physical.”

All the images here are shot by photographer Helen Murray, and you can read the entire piece about this superb show over on the Guardian website.

Dayo Koleosho as The Eater, in Madhouse re:exit by Access All Areas (all photos by Helen Murray)

Dayo Koleosho as The Eater

Imogen Roberts as The Goddess]

DJ Hassan as The BIrd

DJ Hassan as The Bird

Cian Binchy as London’s Oldest Baby