History – When the ‘state boys’ fought back

Community Living 

Community Living

— Summer 2017


History – When the ‘state boys’ fought back – Simon Jarrett recalls an event in 1957 which was a significant moment in the history of asylums, a rebellion that would have far-reaching consequences.

Founded in 1848 the Massachusetts School for Idiotic and Feebleminded Youth was the first of its kind in the United States. By the mid-20th century it had expanded hugely, housing almost 3,000 children and adults and occupying hundreds of acres of land in the Massachusetts countryside. At this time it became the Fernald School for the Feebleminded, named after one of its distinguished former superintendents.

Whatever ideals it might have had when it was founded, they were long gone by the 1950s. It was now a site of soulless, lifetime incarceration for thousands deemed ‘morons’ in the twisted logic of eugenic thinking. This saw the uneducated offspring of the poor as the alcoholics, criminals, prostitutes and welfare dependants of the future, and locked them away from society to ‘protect the race’. Their passport in was a failed IQ test. There was no passport out.

Sexual abuse

Fernand had also become a site of heart-breaking cruelty and abuse. The young patients were subjected to mindless, painful physical punishments and were forced to sit in silence for hours on end in their wards, for no particular reason. Sexual abuse was rampant. Ironically, at the same time the labour skills of the ‘moron’ population were highly valued in the fields, kitchens, laundries and workshops of the institution. By 1949 the governors decreed that 38 per cent of Fernald’s population must be ‘high-functioning’ morons – they were needed to keep the place going.

Fernald was also a site of scientific research. In the early 1950s a group of boys were tempted by gifts and free porridge to join a ‘science club’ research project into the effect of chemicals on the absorption of calcium in milk. It emerged in the 1990s that the oatmeal in this project, (partly funded by Quaker Oats), had been laced with radioactive calcium. The ‘boys’, by now ageing men, received an official apology on behalf of the US state from President Bill Clinton. Some received compensation.

By 1957 Fernand was dangerously overcrowded and understaffed. The toxic mix of abusive or overwhelmed staff and thousands of angry, undereducated and desperate adolescents reached a tipping point. On 4 November fifteen teenage boys on Ward 22, a destination for known ‘troublemakers’, decided they had had enough. In the afternoon, they started a small fire in a clothes closet. When attendants arrived to investigate they were seized and bundled out of the building.

The rebels then put out the fire and locked the doors, taking control of the building. They took keys from the office and released the boys held in isolation cells. One of the cells was set on fire. They destroyed files. As the sirens of approaching fire tenders and police cars wailed, they smashed a window and trained a firehose through it, ready to repel attackers. Police and attendants tried to storm the building. The firehose was deployed by the boys against them, causing them to flee as the water turned from cold to hot – the hose was connected to the boiler system.

Megaphones were used to plead with the boys to come out, promising fair treatment. “Back off or we’ll burn the fuckin’ place down”, came the reply. State troopers arrived and, with local police, surrounded the building, armed with rifles and pistols (they had in fact been instructed not to use them). The intimidation worked, and at 11.30, eight hours after the rebellion began, the boys filed out.

They were taken by police paddy wagon to the local Bridgwater State Hospital for the Criminally Insane. Seven returned to Fernald several weeks later, eight were detained indefinitely at Bridgwater. The last of these came out five years later, in 1962.

Inbuilt cruelty

For the boys it was a life-changing event. They had acted with intelligence, organisation, strength, and courage, and shown themselves more than the equal of those employed to ‘look after’ them. They later recalled that they now saw themselves no longer as boys, but as adults, worthy of freedom. Slowly, Fernald, and the other institutions across America began to close, as the futility and inbuilt cruelty of their very existence became clear. The rebels, eventually, moved to their communities. Some prospered, married and held down jobs. Others, unsurprisingly, struggled with freedom. But Fernald was dead and they were alive. The rebels had won.

Material for this article is compiled from Michael  D’Antonio’s  book The state boys rebellion (Simon and Schuster, New York, 2005)

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Now the good old days have gone it’s time to get organised

Community Living 

Community Living

— Summer 2017

Licorice Allsorts

Simon Duffy says it’s time to stop feeling sorry for ourselves. The days of easy grants and well-intentioned government have gone – people with learning disabilities, families and their allies need to come together and fight for positive change

It is an obvious truth that people with learning difficulties are not at the top of the political agenda. If we wait for politicians to improve things for people we will be waiting a long time. The positive changes we have seen are the result of grassroots campaigning, innovation and community development.

But politics does matter. Today things are going backwards. Cuts in support and benefits have targeted disabled people, and politicians now blame disabled people and people in poverty for social problems. New tests to eliminate people with Down’s syndrome are being introduced. Independent advocacy is closed down. In the UK the situation is so bad that the United Nations recently called on the UK Government to reverse its policies because they breach human rights (1). Now the Government has stopped funding the National Forum of People with Learning Disabilities and the National Valuing Families Forum. This effectively brings to an end the Valuing People policy.

Lost sense of purpose

Today many people have lost their sense of purpose and their passion; they look back fondly to the ‘good old days’: when theories like social role valorisation made it easy to say what was bad; when government seemed well-intentioned; and when there always seemed to be some funding available for new projects.

It’s time to stop feeling sorry for ourselves. We need to get inspired, get practical and get organised.

The good news is the ideals of inclusion and equal citizenship still make sense. People with learning difficulties don’t just belong in community – they show us what community really means. We don’t need complicated new theories to explain what’s wrong with institutions. We just need to start talking with pride and with confidence about what people with learning difficulties are showing us about the true meaning of justice. And these ideals are not just important to people with learning difficulties, they are also important to all those other groups who are under attack for being different: immigrants, asylum seekers, the poor and other disabled people.

We also know how to make things better. We can close down the institutions; we can break down the walls that separate people; we can create more inclusive communities. There is lots of positive experience and practical wisdom out there. We just need to stop waiting for permission from ‘on high’ to do the right thing.

We should also organise ourselves much better. It was a disaster to make the National Forum reliant on central government funding. Now we must get organised from the grassroots and bring together people, families and their allies in a united movement for positive change.

We mustn’t squabble about the little things on which we can’t agree. We must focus on the mountain of things we have in common and reach out to the other groups who are also under attack.

Reference

  1. UN Committee on Economic, Social and Cultural Rights (CESCR) (2016) Concluding observations on the sixth periodic report of the United Kingdom of Great Britain and Northern Ireland.

Dr Simon Duffy is Director of the Centre for Welfare Reform and secretary for Citizen Network. http://www.centreforwelfarereform.org

When government takes up your best ideas be scared, be very scared

Community Living 

Community Living

— Summer 2017

Houses of Parliament

Jan Walmsley argues that some powerful and progressive ideas become excuses for inactivity once the dead hand of government latches onto them.

The headlines are not encouraging. Creeping institutionalisation, despite government promises. Deaths of young people in institutional care. Those uninvestigated deaths identified by Mazars and CQC. Budget cuts. Families struggling with little support. No money for self-advocacy or the National Forums. Manipulation of the benefits system to pressurise people into employment, even when there is no possibility of it.

How has this happened? It’s only 16 years since Valuing People, that beacon of promise for equal citizenship.

We can name the usual suspects. Austerity. The decline of the welfare consensus. The triumph of individualism and erosion of communities. But I think we need to look again at the ideas behind Valuing People, and how they have been distorted to justify policy which stresses work participation, personal budgets and self-directed support; and the closure of those services which once provided activity, support and connections.

Powerful ideas

The prelude to Valuing People saw unprecedented energy and idealism in learning disability matters. Institutions were closing. Self-advocacy flourished. Social inclusion became a real prospect. This was partly down to some powerful ideas – social role valorisation, and the social model of disability.

Probably most influential was social role valorisation (SRV), associated with the late Wolf Wolfensberger. He argued that to counteract ‘devaluation’ we must give people ‘valued social roles’ like paid worker, author, researcher and so on. To achieve this we must dismantle segregated services, remove stigmatising labels, and promote association with ‘valued’, i.e. non-disabled people. It was hard in the late 1980s to find professionals working in learning disability who had not been on an SRV course. And they were effective. People were enthused and energised in a way that feels unthinkable today.

More familiar to many is the social model of disability, home grown in the UK by disabled campaigners. The social model argument is that disablement is not the fault of bodily impairment. It’s caused by the barriers society creates. They can be physical, like stairs, but also attitudes, assumptions that because you are disabled you can’t do things. The social model rejects ‘care’ in favour of money to employ personal assistants, hence Direct Payments and Individual Budgets. And, of course, reducing barriers to employment resulting in schemes like Access to Work.

Although sworn enemies, partly because SRV was the creation of non-disabled people, while the social model was created and passionately owned by disabled people, they have quite a lot in common. Both inspired people to campaign for change, often with some success.

Another thing they had in common was that both minimised the impairment, arguing that if you get the environment right, then the impairment matters less, if at all. There is truth in this. People do better with the right supports, when they have positive relationships, and when the ‘community’ is friendly. But, the impairment does not disappear, however good the supports, or benign the community. Most people with learning disabilities still struggle with some aspects of life.

Dismantle services

However, for governments intent on rolling back the state, saving money on welfare, the assumption in both SRV and the social model that all can be solved if we dismantle segregated services, portray paid employment as the height of ambition, and make buses accessible, is manna from heaven.

A senior academic who works with government said to me, “When government takes up your best ideas be scared, be very scared.” He was right. Half baked interpretations of the idealism of SRV and the social model have led to grave consequences for people with learning disabilities and their families, where neglect prevails – justified by the very ideologies which inspired positive change.

Jan Walmsley is Professor of Learning Disability at the Open University and author of numerous books and articles on learning disability.

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We need action to reverse the return to the past

Community Living 

Community Living

— Summer 2017



The new government is said to have signalled the end to austerity and there is now an opportunity for the opposition to resist some of the worst effects of this policy on vulnerable people.

Unfortunately, It is unlikely any policies will be related specifically to learning disabilities. The last seven years have seen an alarming fading of government focus on learning disabilities and the funding to support them, along with the services, infrastructure and policy initiatives necessary to enable them to live independent and meaningful lives.

We raised major issues during the recent election campaign that we feel are vital to the future of people with learning disabilities in this country. First, why are they, even though already among the groups most affected by poverty in the UK, inordinately bearing the brunt of spending cuts? This process must be reversed. Second, action must be taken over the scandalous 6% employment rate of people with learning disabilities. This is a shocking waste of human potential. Third, we are seeing a move away from people with learning disabilities living in their own tenancies in their communities and a growth in large-scale institution-like ‘housing units’ (as our columnist Robin Jackson writes on page 10). This is a depressing step back into the past which is taking people out of the communities they have fought so hard to be a part of. Finally, there are still over 2,000 people with learning disabilities locked up in hugely expensive ‘assessment and treatment’ units, often far from home and family, where abuse and ill treatment are rife, as happened at Winterbourne View. Our article on page 7, written from inside the world of NHS commissioning, shows the callous way in which some of these dreadful commissioning decisions are made.

We endorse the call by Simon Duffy on page 9 to get political In the face of these threats and government indifference. People with learning disabilities, their families, activists, and those who work in the field, have an obligation to return to grass roots action, to bring the issues facing people with learning disabilities back into public focus. There is no better place to begin than the Seven Days of Action campaign (https://www.sevendaysofaction.net) and we urge readers to join and support this campaign against the scandalous incarceration of people in bleak institutions far from home. Our forthcoming issues will focus on the other challenges that people with learning disabilities face, on multiple fronts, and we will discuss action to address them. As Simon Duffy puts it, “It’s time to stop feeling sorry for ourselves.” The time to be quiet and hope for the best is over.



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A quarter of the adult social care workforce quit every year

Community Living 

Community Living

— Summer 2017


A quarter of the adult social care workforce are leaving their jobs each year, according to a report by the Health Foundation. The Foundation warns that pay freezes and poor workforce planning are seriously affecting social care staff retention.

This is leading to severe adult social care staff shortages with more than 900 people estimated to leave every day, the report says.

It adds: “The annual rate of leavers has increased steadily, from 23% of the workforce in 2012/13 to 27% in 2015/16.”

The vacancy rate among social workers also rose, from 7.3% to 13.1% between 2012 and 2015. The real value of pay for health and social care workers, says the report, fell by 5.8% over the past seven years, compared with a reduction of 1.9% in the wider economy.

The introduction of the national living wage for staff aged over 25 in April 2016, with the pay floor rising from £6.70 to £7.50 an hour, has resulted in an improvement. However, the report warned that this may have minimal impact on retention because the living wage had increased pay in other sectors too.

The Foundation said the market for social care was ‘fragmented’, which made workforce planning more complex. “At present there is no national statutory body responsible for ensuring that England has a social care workforce with the skills needed to provide a high quality service,” it said.

The Foundation said health and social care would need to become integrated to meet changing needs and ‘piecemeal policy making’ was not serving the sector well. “The NHS and social care will not be able to move forward to deliver sustained efficiency improvements and transform services without an effective workforce strategy,” the report said.

Sustainability

Anita Charlesworth, director of research and economics at the Health Foundation, said the number of social care staff leaving their jobs “raises concerns about the sustainability of the service”.

“Retention, recruitment and morale will continue to be a thorn in the side of the health and social care sector if action is not taken to address the root cause of these problems,” Charlesworth said.

“If pay restraint in the public sector continues to 2019/20, it will have been in place for almost a decade. It is a policy that is testing the resilience of the workforce and the ability of services to improve while maintaining standards of care,” she added.

The consequences of Brexit are also causing concern as around 90,000 social care workers come from the EU. Charlesworth fears there could be major
implications for the quality of care if there was a significant reduction in EU staff.

The Foundation recommended the next government end the public sector pay cap and train more staff than will be needed to help fill the current gaps.

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Is the Equalities and Human Rights Commission failing children?

Community Living 

Community Living

— Summer 2017



In April, the Equalities and Human Rights Commission (EHRC)’s disability rights committee ceased being statutory, writes Chris Goodey. How effective will its newly advisory role be?

If it wants to assert itself, it can revisit a still unresolved dispute about mainstream schooling. In January 2014, according to Disability News Service, the EHRC endorsed the inclusive education clause in the UN Convention on the Rights of Persons with Disabilities. But it then went on to say that for “some
children with very severe learning disabilities … this is neither possible nor appropriate” – a statement immediately challenged by disability activists.

Impossible? Since some children with whatever degree of difficulty are in some ordinary schools, it clearly is possible. When a school refuses a child, it is a case of won’t, not can’t: exactly the sort of structural discrimination the EHRC should be demolishing instead of actively defending.

And inappropriate? The UN’s criterion for having rights is not competence but ‘membership of the human family’. Logically, the EHRC seems to be saying
that some children are not really human at all.

Having repeatedly refused to retract, perhaps the committee’s current role – and the recent arrival of a new EHRC chair – makes it a good time to reconsider.



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Internships offer rewards for both students and companies

Community Living 

Community Living

— Summer 2017


A law firm offering young people with learning difficulties internships has found the process rewarding for both the firm and the young people.

Leeds-based Ison Harrison has struck up a partnership with Shipley College in West Yorkshire to offer student internships de-signed to build confidence and improve life skills. Two students, 21-year-old Jack Driver and 10-year-old Sumaira Yasmin, have both moved on to paid employment as admin assistants with the firm.

The scheme has proved such a success that the firm is encouraging other local businesses to do the same.

“Having our first intern in Jack was very rewarding from a personal point of view but also for the business to know about and get involved with young people with learning difficulties”, Paul Allison, Ison Harrison’s facilities manager, told Community Living.

The law firm, which has 12 offices across West Yorkshire, agreed to take the two students as part of the College’s supported internship programme, an innovative scheme that offers students on the job mentoring in commercial environments.

“Jack and Sumaira had never had jobs before so this is a major achievement for both of them”, said Mr Allison. “Jack is severely autistic and when I first met him he was extremely quiet and lacked confidence. Since joining us he has blossomed – he enjoys interacting with other members of staff, his confidence has grown massively and he is very independent, travel- ling to work on the train by himself which is a daunting challenge. He’s even passed his driving test recently so this just proves how far he has come.”

“Sumaira settled into the role from the outset. She has a tremendous attitude, an infectious smile and is eager to please. Her computing skills are really good and one of her main responsibilities is data inputting for the firm. Mentoring these young people has been very rewarding for me as I’ve never done anything like this before and to see the end result makes me feel proud of everything we have achieved together.”

The pair have now taken starring roles in a new video produced by Shipley College which provides an insight into how their internships led to permanent, life-changing roles. The video can be viewed at: https://vimeo.com/206567359

Managing partner at Ison Harrison, Jonathan Wearing, added: “We were approached to support Shipley College and realised that we could provide real hands-on support that would make a difference to peoples’ lives. The whole process is very rewarding for both parties – the business benefits from gaining enthusiastic new team members and the individuals themselves are provided with a good career and real prospects. I would strongly encourage other local businesses to get involved by providing the same opportunities for youngsters with learning difficulties and discover what a rewarding and worthwhile experience this can be. We have seen firsthand the difference simply giving someone a chance can make to their life.”

Attila Darvas, Shipley’s Supported Internship Programme Co-ordinator, told Community Living: “We have been running the Supported internship Programme since 2012 and we successfully place learners with special educational needs into part time and full time employment every year. The jobs negotiated by the end of each year are mainly part time. Between 2012 and 2016, 47% of Shipley College supported interns gained employment and of
those 27% gained paid employment*.

“We also work with other third party agencies to provide an alternative exit route for those learners who are not offered a job by the end of their internship.”

She added: “The success of Jack and Sumaira’s internships prove that workplace mentoring is an effective and rewarding experience for mentors and mentees. We already work with many local businesses who are offering young people on this programme the opportunity to join their workforce and have had very positive feedback about the value of this for their business as well as for the interns. We are always looking for supportive local businesses to provide real job opportunities and would urge them to follow Ison Harrison’s lead.”

* In England the employment rate of people with learning disabilities continues to drop and currently stands at just 6%.

Shipley College delivers a wide variety of courses under the Foundation Learning sector such as: Supported Internships, Using Employability Skills, Vocational Studies, Independent Living and Functional Skills (English and Maths).

For information about courses at Shipley College go to: http://www.shipley.ac.uk/courses/categories/entry-(supportedlearning)/? type=full-time

For information on supported internships: http://www.shipley.ac.uk/employers/other-ways-to-get-involved/supportedinternships



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Universal Credit – Slipping timetables and a raft of concerns

Charlie Callanan 

Charlie Callanan

— Summer 2017

Our benefits correspondent Charlie Callanan explains a new system with far-reaching implications struggling to get off the ground.

The long-running introduction of Universal Credit continues to cause concern and anxiety for many learning disabled people and the professionals, carers and relatives who support or look after them. Concerns include how soon clients will have to claim the benefit and what support will be available to do this.

Universal Credit is for people of working age who are on a low income, whether in or out of work. It is replacing all the means-tested benefits, called ‘legacy benefits’. These are income-related Employment and Support Allowance (ESA), Income-based Job Seeker’s Allowance (JSA), Income Support, Housing Benefit, and child and working tax credits.

The timetable for the roll-out of Universal Credit has continually slipped since its initial introduction in 2013. Currently the ‘full digital service’ is being rolled-out across Great Britain, with completion planned for September 2018. From 2019 the Department for Work and Pensions (DWP) will begin the ‘managed migration’ of all existing claimants of means-tested benefits to Universal Credit, to be completed by 2022.

This now means that any new claimant entitled to claim means-tested support, and who lives within a full digital service area, will have to claim Universal Credit.

Transitional protection

However, existing claimants already getting a legacy benefit within a full service area may also have to claim Universal Credit, under the ‘natural migration’ process. This is most likely to happen where the claimant has a relevant change of circumstances. Examples where this may happen include where an ESA claimant fails the work capability assessment and tries to claim JSA while challenging the decision; or where a couple either separates or forms; or a JSA claimant becomes a carer and tries to claim Income Support.

Claimants who are moved in the future to Universal Credit via managed migration will get ‘transitional protection’. This is an extra amount of money which tops up a Universal Credit award so that the claimant is not worse off when moved onto the new benefit. However, claimants who move as
a result of natural migration will not be entitled to this.

A major feature of Universal Credit is that the claimants must apply for and manage the benefit online. This may cause difficulties for some clients unless they can get help managing their claim.

The policy of the DWP is to provide help for more vulnerable clients, where required. This may include ‘assisted digital support’ or help from a specialist team in a local job centre.

However, while government guidance (see rightsnet.org.uk/universal-credit-full-service-guidance) explains what assistance is potentially available, it also emphasises that the claimant should be strongly encouraged to be independent in managing their claim and that there are limitations to the help that DWP staff may give. For example, it states that job centre staff must never enter information on a claimant’s behalf, adding: “Assisted Digital Support includes: coaching, challenging and motivating claimants to become more digitally competent – helping them to create, maintain and fully utilise their digital account.”

But if the claimant cannot cope with being independent in inputting data, problems may arise if they provide wrong or inaccurate information; for example, about their capital or their number of working hours. This could have serious consequences for their claim, such as it being suspended or lead to an over-payment.

Explicit consent

Ironically the rules for Universal Credit may make it harder for a third party, eg. an advice worker, to intervene and support a learning disabled client. Unlike most DWP benefits where implicit consent is accepted to allow advisers to help claimants without needing to have written consent, DWP have introduced a system of explicit consent for Universal Credit. This means that the claimant must give their explicit consent for an adviser to act on their behalf, via their online account, or with the third party on the phone or in person at a job centre. The claimant must be clear about the specific information they want to disclose, so a general consent will not be enough, and the consent will only apply to that particular enquiry or issue.

Fortunately for many of our clients already claiming benefits they will have some breathing space before Universal Credit is forced on them. But professionals will need to be ready and willing to assist, or signpost to expert advisers, any clients who end up in the Universal Credit system.

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National Commissioning and Contracting Conference 2-3 October 2017

Community Living 

Community Living


The Best Conference for anyone interested in Health & Adult Social Care Commissioning.

Organised by commissioners for commissioners & providers.

The cost this year is still only £165 +Vat for public sector, £225 for independent sector (for bookings made before 31st July 2017).

This price includes:

  • overnight en-suite accommodation and all meals (including breakfast, dinner & lunch)
  • free taxi from Derby station (if travelling by train) and return after the event
  • Free access to all workshop and speaker notes from the website

Further information & booking forms available from www.ncctc.co.uk  or martin@ncctc.co.uk



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FREE event 25 July London – Fionnathan’s Abundance Project: talk, films and music

Community Living 

Community Living

Community Living magazine is delighted to co-host Fionnathan’s London event

The Abundance Project – Radical Inclusion, the Power of Families and Dreaming Bigger

Tuesday 25 July 2017 7:00 – 9:00pm Temple Lodge, 51 Queen Caroline Street, Hammersmith, London W6 9QL

Fionn and Jonathan, a son/father team from the West of Ireland, will share an incredible story. Illustrated with photos and short films, this talk will address

  • Healthy Families, Strong Communities
  • Surviving and Thriving through the School Years
  • Meeting Challenges Creatively: Redefining the System
  • Travelling the World, from the Amazon to Zanzibar
  • The Elements of a Great Life

Also included will be a live performance of traditional Irish music.

Entrance FREE but donations gratefully accepted at the event. More information from fionnathan.productions@gmail.com

 ( The Phenomenon of Fionnathan – an interview with Fionn – will be in Community Living magazine due to be published early July)

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“Simple Simon – a natural, a silly fellow”

Community Living 

Community Living

— Spring 2017

Simon Jarrett unearths the history of his namesake Simple Simon, a man who was always laughed at but somehow always remained in his community.

In the very first issue of Community Living, in April 1987, our fabled first editor David Brandon wrote a great article entitled Simple Simon’s sad message – the cruel humour of kids’ comics.

David eloquently denounced the plethora of jokes in children’s joke books and comics about ‘thick’ and ‘stupid’ people, with names like Loopy Lulu and Stupid Sid. He saw these disablist and devaluing jokes deriving from the well-known19th century children’s nursery rhyme about Simple Simon who met a pieman going to the fair and proceeded to do all sorts of ridiculous things, because of his crippling lack of intellect.

Many guises

Simple Simon himself has a long ancestry and has appeared in many guises over the centuries. He has played a big role in the consciousness of British people. A dictionary of slang from 1788, compiled by a gentleman called Francis Grose (1) defined a ‘Simon’ as follows: “…a sixpence. Simple Simon; a natural, a silly fellow. Simon suck-egg, sold his wife for an addle duck egg.”

This conveyed a number of meanings that were applied to ‘simple’ people at this time. There was a widespread belief amongst urban dwellers, particularly Londoners, that people from the countryside were dim and slow (think Norfolk jokes today), and so any popular rural name was turned into an insult that implied a lack of brains  – as well as a Simon, you could also be a Roger, a Dick or a Ben.

The reference to a sixpence is because the sixpenny coin at this time was ‘easily bent or distorted’. Thus a sixpence could refer to a person who was physically ‘bent’, but also to someone whose low intellect meant they could be easily exploited. The rhyme about selling his wife for an egg refers to Simon’s inability to understand value or family relations.

There were numerous stories and songs about Simple Simon in the17th and 18th centuries, often sold in one-penny ‘chapbooks’ that even very poor people could afford. These Simons were always men, not the perceived child of the nursery rhyme, and always married to a shrewish wife, usually called Margery, who would become so exasperated by Simon’s stupidity that she would dish out all sorts of extreme violence to him.

In one story from 1775 (2) Margery hits Simon with a staff, ‘such a clank on the noddle, as made the blood spin’. She then ‘let fly with an earthen pot, which caused the blood to run about his ears’ and whips him with a dog whip. In a song from the same year, (3) ‘Poor Simon’ is attacked by the hard-drinking Margery who beats him with a large cudgel, ‘lugs’ his ears and ‘rings’ his nose, until he weeps. And this was the joke. Simon was so simple, he could not fulfil his role as a man, and was dominated and beaten by his wife, when it should be the other way round. To people in the 18th century, used to a social order in which men were always on top, this was hilarious.

Strong ale

And yet there was always a happy ending. Whenever it reached the point where Simon was pushed beyond endurance by Margery, and would start to weep, or even try to commit suicide (his attempts, of course, always failed), then the neighbourhood would intervene. They would summon Margery and Simon to them, open some jugs of strong ale, and persuade Margery to stop the violence.

They sent for his wife, who came without fail/ their peace was made o’er a jug of ale. (3)

Somehow, Simple Simon – laughed at, ridiculed, beaten by his wife, unable to understand what was required of him – somehow he hung in there and the community wanted him to stay. Simple or not, he was one of them.

References

  1. Francis Grose, A classical dictionary of the vulgar tongue, London, 1788 (2nd edn.)
  2. Anon., Simple Simon’s misfortunes and his wife Margery’s cruelty, which began the very next morning after their marriage, London, 1775.
  3. Anon., A pleasant song – of many more misfortunes of poor Simon, London, 1775.

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The rules are more complex but a child may still qualify for DLA

Charlie Callanan 

Charlie Callanan

— Spring 2017

Charlie Callanan  explains how claims for disability living allowance (DLA) can still  be made for children with a learning disability aged under 16 years

A child can qualify for the DLA care component either because of their need for attention with bodily functions (eg. eating, washing and dressing) and/or supervision to avoid ‘substantial danger’, as well as where the child has a terminal illness. They may qualify because of help or supervision that is reasonably required during the day and/or during the night-time.

Unfortunately, however, the rules around DLA for children are generally more complex than those that applied to adult claims.

To qualify for the care component a child claimant must meet one of the following extra criteria, along with the basic conditions of entitlement:

  • the child’s attention or supervision needs are ‘substantially in excess’ of the care or supervision normally needed by a child of the same age without a disability; or
  • the child has ‘substantial’ care needs or supervision needs that all younger children without a disability usually have, but which the older, learning disabled child may still also have.

When making a claim it is important to explain how the extent, nature and quality of help and attention given to the disabled child is additional and/or different. For example, a child of five may sit and eat her dinner once told to do so while an older child with ADHD may be easily distracted or leave the dining table during a meal, and so need prompting and encouraging.

Unlike a non-disabled 13-year-old child, one with Down’s Syndrome is very likely to need extra learning support at school, as well as possibly help, or prompting and encouragement, with carrying out daily activities at home. If an older child frequently wakes and gets up during the night-time, and then needs a lot of attention and reassurance to go back to bed and sleep, that is attention that a child aged four or five and upwards would not normally need.

It helps to build a picture for the decision maker by giving lots of examples of when, where and how extra help or supervision must be given.

Evidence

The extra help given at nursery or school can form an important part of the picture of the child’s daily needs. So any evidence from schools about those needs and/or a statement of special educational needs, will help with the claim. Medical and other relevant written evidence can help to convince a decision maker to give an (appropriate) award of DLA.

Children can qualify for the higher rate of the mobility component on the basis that physical problems severely restrict their ability to walk. However, a child who has no physical problems with walking may still qualify for the higher rate where a severe mental impairment results in extremely disruptive and dangerous behavioural problems. Behaviours such as a risk of running into the road, or sitting down and refusing to walk when outdoors, are relevant for this test. Note that there is another hurdle, as the child must also qualify for the highest rate care component in order to qualify for higher rate mobility.

It is very likely that medical evidence will be needed to convince the DLA decision maker that the child meets the criteria for severe mental impairment.

To get the lower rate mobility component the child must need guidance or supervision with walking on unfamiliar routes. As for the care component, the guidance or supervision required must be substantially greater than that needed by a child of the same age without a disability. The full legal tests for a child to qualify for the different rates of the two components can be complex. See the links below for the various qualifying tests and conditions, as well as lots more tips and guidance on completing the application form.

An award of DLA means a regular cash payment that can be spent on additional costs resulting from the child’s disability. It can also lead to entitlement to certain concessions and to extra money in means-tested benefits and tax credits. And an award of the DLA care component is required before the child’s parent or carer can possibly claim Carer’s Allowance. So it is important that the parents or carers of learning disabled children are encouraged to consider making, and helped as necessary with making, a claim for DLA.

Links

http://www.cafamily.org.uk/media/975632/claiming_dla_for_children.pdf

 http://www.cafamily.org.uk/media/379407/dla_for_children_with_learning_difficulties.pdf

http://www.autism.org.uk/18330

 

Charlie Callanan is a welfare rights adviser with over 16 years experience in the statutory and voluntary sectors.

 

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Film that breaks new ground

Community Living 

Community Living

— Spring 2017

Simon Jarrett praises a keenly observed film seen entirely from the point of view of its main character

My Feral Heart  Director: Jane Gull   Writer: Duncan Paveling

A young man with Down’s syndrome looks after his ailing, elderly mother. The two of them live alone. He is calm, competent and kind. He cooks, cleans, shops and helps her to wash and dress. He plays her favourite music and even manages to get her to dance a few steps with him. Their world is very small and very isolated, but he is in control and manages it well. The inevitable happens, and his mother dies in her sleep.

Sadly, what follows is equally inevitable: social workers, much tut- tutting over his vulnerability, total statutory blindness to his abilities and his personal history, and the sad enforced car journey away from everything he knows, to a care home utterly strange to him.

This is the premise of Jane Gull’s excellent and keenly observed film, which breaks new ground in cinematic treatment of learning disability in a number of ways. The film is seen entirely from the point of view of Luke, played by Stephen Brandon who has been nominated for Best Actor in the National Film Awards for his fine performance. Other characters feed off him and are sometimes influenced by him but they are not the story – he is, throughout. Luke is a three dimensional character, who has the full range of human emotions. This should not be a surprise but unfortunately, given the history of film treatment of this subject, it is. Finally, we are asked to believe in him and go with him, even when he is doing things that appear to us unexplained and strange. And because of this film’s sincerity and authenticity, coupled with the strength of Stephen Brandon’s performance, we do.

The care home is a miserably inappropriate place for the grieving Luke, alien to everything he has ever experienced in his life. As a ‘resident’ he cannot enter the kitchen, he cannot go out unaccompanied and nobody seems to know or care about who he is, other than that he is a man with a learning disability who has now become that dreadful anonymous object, a service-user. As is often the case, he is seen for who he is not by any qualified ‘professional’, but by two outsiders – Eve (Shana Swash), a lowly care assistant who senses his grief, and Pete (Will Rastall), a posh but troubled young man, doing community service in the care home grounds.

Magic realism

Pete simply bonds with Luke human to human, troubled outsider to troubled outsider. There is a bold (if not entirely successful) element of magic realism, when Luke rescues an injured, mute wild child (Pixie Le Knot) whom he finds lying in a field, and removes her to a barn where he cares for her.

It is a pity that this film did not win general release. However, it has built a following and a reputation through the ‘our screen’ initiative where cinemas will show a film if enough people sign up to watch it. It has attracted screenings across the country in this way, a sign of its strength and the originality of what it has to say.

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A smart look at that nagging ‘Who’s human?’ question

Community Living 

Community Living

— Spring 2017

Theatre review by Simon Jarrett

Princess of the Graveyard Palace   Ellen Goodey and Annie Smol (co-directors)  Ellen Goodey and Chris Goodey (co-writers)              Stratford Circus Arts Centre

In theatre, there is nothing worse than a play that simply reaffirms its audience’s expectations and beliefs: and similarly there is nothing better than when a play, like this one, chips away at everything you think is true. Sometimes you see a production that is so smart, so wise, and so challenging, that you would just like to be able to take it away with you for future reference. And here is such a play.

Princess of the Graveyard Palace defies easy description. A princess (Katy Cracknell) grapples both with her own grief and with her fears for the future as her father, the King (Delson Weekes) dies. She wants to understand the world outside her palace, and so we go on a time-travelling tour of several thousand years of human society. We see first the Stone Age, then ancient Greece, followed by the turbulent early days of the protestant religion, and finally the all-knowing world of modern medicine in the all-powerful asylum institution. These apparently highly disparate worlds are united by one thing – a desire and a drive to identify those who are different, those who don’t quite qualify as human, and to remove them from human society. In each case the exclusion is based on the person’s brain power – if they are perceived not to have enough of it, they are out.

For soul read brain

It is startlingly original. The sets are beautifully and brilliantly simple and the time transitions happen effortlessly. The dialogue at times hits you between the eyes with the force of a heavyweight boxer’s glove. “What if someone looks like a human but they aren’t?” a group of drunken Greek philosophers ponder. We all know where that is going to lead. In the religious scene God and the Devil explain the mechanics of predestination – the idea that each of us is assigned either for hell or heaven from birth – to a puzzled priest, who asks, “How do I know who’s who?” “You give him an assessment,” explains the Devil, “see if he’s got a soul. If not he goes down with me.” For ‘soul’ read ‘brain’ – if he lacks the capacity to read and learn his catechism, then out he will go, cast off to the hell of non-belonging.

A later scene is in an asylum. Walter(Gopal Gautam), the ‘idiot’ character, appears in a gag. He is subjected to an IQ test. He can’t answer because he is wearing a gag. He is predestined to be excluded, unable to answer the questions of the modern high religion of medical authority. This medical authority needs him in the hell of its institutions and shapes his life from birth accordingly.

The lead artist, co-director, co-writer and co-choreographer for this unique and striking theatrical event is Ellen Goodey, who has been making a name for herself in dance, drama and singing circles for a while. She co-wrote this with her father, the historian Chris Goodey. Together they have produced something very special, as have their very talented team of actors, performers and support staff.

Who is human? And who decides the answer? It’s a big question, and this play lays bare the very disturbing answers that sometimes come back.

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Nothing much happened… and that’s very exciting

Community Living 

Community Living

— Spring 2017

TV programmes reviewed by Simon Jarrett

 

The Missing  BBC 1 Series 2                  Pointless BBC 1            Series 16, episodes 13 & 14

The events of the BBC’s excellent second series of The Missing centre on a British army base in Germany. A teenage girl’s mysterious disappearance has echoes of similar recent disappearances. She is from a British army family, while another missing girl is French, and so the frantic search to find her alive involves a volatile mix of British military police, local German police, and the loveable but eternally gloomy French detective Julien Baptiste.

Some way into the series a not very important thing happens. A chief suspect is the local town butcher and we see him in his shop with his young assistant. The assistant is a young man with a learning disability. He brings meat in and out of cold storage, replenishes shelves with stock and carries out other butcher’s-assistant  tasks. Relations are friendly, and at one point the butcher smiles indulgently when he puts the wrong things on the wrong shelf, and reminds him about what needs to go where. Otherwise this character plays no significant plot role. He is not a victim of violence, he does not bring out the good or evil characteristics of his fellow characters and he is not a plot device to carry the narrative in a particular direction. He just turns up to work and then goes home – just like, well, just like a butcher’s assistant.

Flying start

An equally quiet event unfolded over two episodes of Pointless, the late-afternoon quiz show in which the aim is to secure as few points as possible, by coming up with answers that no one else has thought of. Rula from Bedfordshire appeared as a contestant alongside family friend Peter, a maths teacher. Rula introduced herself as a writer currently working on a crime thriller and an autobiography. She also has Down’s syndrome, (although she didn’t mention that). She got off to a flying start, responding to the challenge ‘name a chemical element with two syllables’ with the answer ‘Krypton’ – now there’s me thinking Krypton is something you find in Superman comics. Rula and Peter made it through to the head-to-head round but just missed out on the final. The next night they appeared again but were knocked out in round one. Rula suggested Jimmy Carter as a former Prime Minister of Great Britain – mind you, she could have done worse, the postgraduate student in the other team proposed Howard Wilkinson (the former manager of Leeds United).

Why mention these two television moments? The whole point about them was that two people with learning disabilities simply appeared as themselves, just part of the mix of people we all see every day of our lives.

As the Channel 4 head of diversity explained in the pages of this magazine last year (Vol. 29, No. 4, 2016), if you are a learning disabled person on television, you shouldn’t have to be an ‘issue’. You can be there because you’re also there in the world we all live in, the one that isn’t on the television. This isn’t tokenism, as some argue.

As the journalist Helen Lewis put it in The Sunday Times recently, “I know that for some people ‘diversity’ conjures up an image of a politburo of political correctness demanding that no one watches The Dam Busters because there are no lesbians in it… asking for diversity is only asking writers and directors to think a little harder, to tell stories that are a little less obvious.”

These were two small stories, one fictional, one real, where someone had thought a little bit harder, and where uneventfulness suddenly became very exciting indeed.

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Autism – a social learning disability?

Community Living 

Community Living

— Spring 2017

Michael Baron reviews a lively, opinionated attempt to understand and explain autism.

Understanding and Evaluating Autism Theory By Nick Chown                                                                                                                          Published by Jessica Kingsley Publishers (2016) ISBN 978 1 78592 050 9 £ 20

This is an excellent study of theory. It is not a study of the day-to-day reality of ‘autism’ as experienced by the one in 100 persons in the United Kingdom estimated to have an autistic spectrum disorder (ASD), or autistic spectrum condition (ASC) as defined by Section 1 of the 2009 Autism Act. It is not a guide to interventions, treatment, care, or lifelong learning , nor to genetics. One may read this 367-page book and find no challenge to the widespread use of the A-word today.

The word ‘autism’ is the most convenient shorthand label at present for a complex group of behavioural difficulties which in their effect range from mild to severe. For how much longer is another question. Chown, correctly, in explaining ‘alternative interpretations of behaviour’ acknowledges the ‘ongoing debate… as to whether autism is a synonym for disability or difference or both’. In his view, which colours his approach, ‘autism’ is a social learning disability involving certain cognitive differences. But when he considers the adjectives ‘mild‘ and ‘severe’, severe is in italics and prefaced by ‘so-called’. It is surely both. Hence it is complex.

The debate is given new life by the findings of an Australian study, published in Autism Research in January  2017, that while numbers in diagnosis have risen ‘the proportion with severe features have declined‘. Therefore, as we strive for a better and more accurate definition of the central or core features of ‘autism’ (italicising it thus, is a way of expressing the underlying question – ‘is it the right word?’) , this book, is timely. An ever-expanding industry of academics, care homes, schools, charities, medical, educational and social work professionals, publicists, fiction and film writers and others needs to know. It was not like this once.

Refreshing

The first generation of parents of today’s middle-aged adults, for the most part, were convinced their ‘ineducable’ children were at sea in an uncaring society by their condition of strangeness. Time was when psychiatrists, ignorant of Kanner and Asperger, preferred the diagnosis of juvenile schizophrenia, or childhood psychosis – a testament to the historic narrowness of their vision. The National Autistic Society said: “‘Autism’ was devastating to parents who across the world experienced their children as ‘mentally handicapped’.” No neuro-diversity then, no mental health issues, no idea of the centrality of a fundamental communication disorder. And no concept that, given the continuing changes in diagnostic criteria, this might well be a hydra-headed social learning difficulty.

This book betrays its origins in lectures at Sheffield Hallam University. Other than its reluctance to consider the contemporary validity of the A-word, and the absence of any reference to brain studies, it is necessary, lively and refreshingly opinionated.

Chown knows his subject. This is an essential accompaniment to teachings and literature on the work in mainstream schools, special units, by support workers, in care homes: the daily interventions in the lives of thousands of men, women and children One day there might be a cure, which some, because of the singular gifts of a segment of the ‘autistic’ community, argue against. But for now we need acceptance of difference. And we need, too, a great leap forward in knowledge of the psycho-biology of the human brain, and thus of causation. This comprehensive understanding of ‘autism’ theory is a step on that journey.

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A helpful assortment of disruptions

Community Living 

Community Living

— Spring 2017

John O’Brien, who has led the challenge to segregational thinking about learning disability, enjoys the challenges presented by a new book on community care and inclusion.

 Community care and inclusion for people with an intellectual disability. By Robin Jackson and Maria Lyons, (Editors)                  Published by Edinburgh: Floris Books, (2016)

Unless continually renewed, ideals that motivate social learning – like the movement to replace custodial institutions with settings that offer active support for choice, participation and growth – degenerate into a succession of dead slogans pasted over more of the same impoverishment, exclusion, external control and maltreatment.

Renewal involves relentless questioning of assumptions, questioning grounded in openness to the actual experience of people with intellectual disabilities. Renewal is disruptive; openness can’t be taken for granted. Defences against discovering the limits of what we wish were true, facing demands to stretch farther and learn to do better, and recognizing the incompleteness of our understanding, all influence our perception. We need to intentionally create opportunities to look at what has become familiar to us through the eyes of people with different perspectives and experiences.

Robin Jackson and Maria Lyons have edited a helpful assortment of disruptions to the comfortable conclusion that progress has reduced good assistance to people with intellectual disabilities to technologies that can be prescribed, measured, monitored and managed. Contributors contest the meaning of community, question the actual experience of people assumed to be included and criticize the judgements of those in the mainstream of community care who act as if they alone know best.

Ways of living together

The chapters of the book that hold most interest for me recount lessons from Camphill, a federation of autonomous schools and intentional communities with people with intellectual disabilities founded around the world since 1940, when refugees from Nazi Austria began the first school near Aberdeen. I respect Camphill as I respect other intentional communities (such as monasteries and co-housing) that take a disciplined approach to allow those who freely join to discover and practise ways of living together – ways that develop people and benefit the wider community and the environment. Study and application of Rudolph Steiner’s esoteric teachings about economics, education, art, architecture, medicine, as well as teachings specific to the care of people with intellectual disability, shape and sustain Camphill’s struggle with questions of how people with significant apparent differences can thrive in each other’s company.

Unfolding Steiner’s teachings to meet the demands of a changing world – topics of study that occupy a substantial number of citizens beyond Camphill – give the movement a coherent, positive stance at some distance from common cultural assumptions. It is just this different angle of expression, of a common value on expanding freedom to live a meaningful life, that makes Camphill and these chapters, valuable. The chapter in which Lyons considers the move for access to work for people with intellectual disabilities by extending Steiner’s economic teachings, which decouple work from pay for all Camphill members, is a fine and provocative example.

Chapters on the application of lessons learned from life in Camphill in understanding democracy and equality, reforming education in China, and promoting Bhutan’s approach to Gross National Happiness demonstrate the flow of experiences, ideas and influences that result from Camphill’s openness and hospitality in sharing the life of its communities. A chapter that links everyday life in Camphill, as it influences and adapts to changes in the world around it, exemplifies awareness of the need for rigorous, continual reflection and renewal. Developing appreciation of the right to choice, for example, gives Camphill occasions for renewal.

These hallmarks – a struggle to share life as equals that transcends staff-client transactions; commitment to a way of living day-to-day that embodies the intention to renew economics, politics and culture, and therefore our planet, as a site for development of spirit; openness and hospitality– differentiate Camphill from the too many consistently failing efforts to congregate and control people, reproducing institutional life whether in facilities housing two or three or dozens.

Defensive tone

Unfortunately powerful people may treat Camphill as if it were not, at its best, precious in what the life that those who freely choose to share contributes to our understanding of inclusive community. This confusion and the conflicts it can generate may account for an occasional defensive tone in the book that contrasts accounts of abuses and shortfalls in the practice of community services (which certainly are there to see) and the ideals of the intentional supportive community (which human fallibility can also compromise in practice).

The book is a hamper of other interesting perspectives, though unfortunately no accounts from intentional supportive communities other than Camphill. A historian traces the modern process that extracted people claimed for control and treatment by doctors, and contrasts the past 150 years of that regime with most of history, in which those who survived their impairments were seen as limited but harmless and largely included.

Researchers retrieve the missing voices of people with intellectual disabilities as they understand and seek belonging for themselves. A psychotherapist details the painstaking accommodations he makes to treat people with intellectual disabilities and analyses the widespread prejudice shared by too many of his colleagues. A pharmacist identifies health risks that follow a facile understanding of independence and choice.

There is a description of the possibilities and limits of social media. There are descriptions of progress in social policy in Australia’s National Disability Insurance Scheme and support to open employment in the US state of Vermont. A change agent and scholar of social movements examines the many functions the idea of community serves, and weighs its potential to motivate progressive action against the dangers that a positive halo will cloak neglect and isolation.

The challenge to my own open-mindedness is a chapter that computes  – on the basis of the alleged realities of social life revealed by neuropsychology and primatology – that the preferred model of group homes for 10 to 15 clients (sic) is almost certainly too small to allow people to make friends and that groupings of 30 to 50 should be preferred. I struggle to make sense of this chapter’s argument as something more than a parody of professional overreach.

Benefiting from this book does not depend on agreeing with the variety of points and perspectives its diverse chapters present but on being willing to try on different perspectives. It deserves to be widely and thoughtfully read.

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Quality checking empowers both people and staff

Community Living 

Community Living

— Spring 2017

Choice Support carried out research to find out how quality checking might help individuals and whether it made a difference to their support provision. Thomas Doukas reports.

STUDY TITLE: THE IMPACT OF QUALITY CHECKING ON THE LIVES OF PEOPLE WITH LEARNING DISABILITIES

Aims: The question we asked is how is Quality Checking different from professional-led approaches and how can such tools empower individuals?

Method: Questionnaire surveys and interviews of 67 people with learning disabilities employed as Quality Checkers; surveys and visits to 18 support providers across London, who had a check done in their services. We also looked at providers’ action plans after a quality check visit and followed this with a second visit. Finally, we surveyed 23 people with learning disabilities who live in the services we checked.

Background

There is very little research on ‘quality checking’ and what there is tends to be informal and limited to reports produced by organisations and support providers who employ people known as Quality Checkers.

Quality checking was first established by Skills for People, a user-led voluntary organisation working in the North-East of England to make sure disabled people can be in control of their own lives. At the beginning of the millennium, Skills for People launched ‘It’s My Life’, a set of user-led quality standards that have been widely used to check the quality of support services.

In 2002, Paradigm launched REACH, a set of voluntary standards designed to encourage good practice in supported living. The REACH standards remain the most widely recognised standards in relation to supported living.

Choice Support is a leading social care charity providing services to people with a wide range of support needs throughout much of England. Established in 1984, we aim to continuously improve the quality of our services by listening to what people want. We work directly with people and their families to shape support that truly meets their needs.

With the establishment of an involvement team in 2007 and since Choice Support has worked closely with Skills for People to employ and train over 70 people with disabilities to become quality checkers.

From February to June 2016, Choice Support carried out some research to find out how quality checking might be different from professional-led approaches (such as service audits) and how such tools might empower individuals. We spoke to some disabled people carrying out the quality checks and to some people with learning disabilities whose services were being assessed. We looked at whether this had made a difference to their individual support provision.

Findings

First, we asked the quality checkers to tell us what impact their job had on them and on other people with learning disabilities they visited in the services. Some spoke about having seen changes made as a result of the quality check they had carried out.

Others spoke about their own learning, how they had developed new skills, about the importance of having a paid job and about how their experience was appreciated and acknowledged.

For the survey, we asked the following question: How much having a job has helped you on a scale from 0-10 (0 is the lowest, no impact – 10 is the highest, a lot of impact).

Over three quarters of the people with learning disabilities who filled out the questionnaire survey said that having a job had had a lot of impact on them by scoring this 7 or above, while only 24% said it hadn’t helped them much.

The survey of service providers looked at the impact of the quality check on services. We asked them:

  1. Do you feel this quality check has had an impact on the residents?
  2. How would you rate the impact of the quality check on a scale from 0-10?

Eighteen services participated. The numbers are small because we limited the survey to services who had a quality check in the last year. We did this because we wanted to keep the data current.

Around 61% of the support providers said ‘yes’ it had had an impact on residents and 22% said ‘no’. Others didn’t answer because no recommendations were reported following the check. In answer to our second question, half of the providers rated the impact above 7 indicating a high impact on nine services. Of those who scored under 7, only one provider rated the impact as lower than 5, while 17% replied ‘don’t know’ (no recommendations were reported following the check).

At the interviews, we asked people to tell us what they thought about the quality check visit and about the report they received. Some of the themes that emerged were around the friendliness of the quality checkers during the visit, the benefit of having a peer-to-peer interview, the value of an independent report, taking on board constructive comments, and the opportunity for the residents to express their views to an external body.

Comments included:

Very relaxing. I met three people and I was comfortable. They were efficient.  You could understand the questions.  We spoke for 20 minutes. I didn’t mind it.  Friendly souls. Easy to get on with them.  (Resident)

I welcomed the quality check, having independent people and all the positive and constructive comments. We have to do audits for the local authority and monitoring for the commissioners. It’s good to have something to show to the trustees. (Staff)

Quality checking is different from service audits because the quality checks are done by people with disabilities who use their own experience and knowledge of what makes good support:

I have seen people who are not encouraged to be independent, like not being supported and involved in their own cooking. I know how my life has changed from being well supported to being more independent. It’s not good if people are not involved in individual decisions about their lives.  (Quality Checker)

This means they know what to look for, and people often tell them a lot about their lives. We get a view that is often missing from quality reviews, monitoring and inspections. Quality checking leads to open and transparent service delivery, offers new safeguards, and raises quality.

Conclusions

Quality checking empowers quality checkers to develop their skills and grow in confidence in the job market. It also empowers disabled people to be in control of their lives by having the quality of their support checked. As such, quality checking is distinctive from professional-led approaches and puts the individual at the centre of their life.

KEY MESSAGES

  • Quality checks are carried out by people with disabilities who use their own experience and knowledge of what makes good support
  • Co-production and the inclusiveness of quality checks gives power to the individual to use their experience to shape their own support
  • Peer-support based models can be highly effective
  • Quality checking can have a significant impact on service delivery, offering new safeguards, and raising quality
  • Being a quality checker helps people with learning disabilities to develop their skills and to grow in confidence in the jobs market.

References & further reading

http://skillsforpeople.org.uk/index.php?q=about-us/our-history

http://www.paradigm-uk.org/reach-standards/

http://www.choicesupport.org.uk/

Thomas Doukas is Head of Inclusive Research & Involvement at Choice Su

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How to help people make real connections with their community

Community Living 

Community Living

— Spring 2017

People without verbal language can be helped to engage with the world through their senses. Jo Grace describes how this can be put into practice.

People who experience the world in a primarily sensory way are often, but not exclusively, people with profound and multiple learning disabilities (PMLD), people with later stage dementia who no longer communicate with verbal language or individuals on the autistic spectrum who engage with the world primarily in a sensory way.

By creating ‘sensory tours’ we aim to help people encounter the sensory experiences on offer. Tours we have created for some of London’s best known heritage settings have proved particularly rewarding – the King’s state apartments at Kensington Palace were the most memorable as they gave me a perfumist to work with who created the smell of Georgian sweat for use on the tour!

It is not always easy for people to connect with the environment the first time they experience it. Its unfamiliarity can make them feel anxious and less able to process information. They may not know how to control their body in response to it; it takes practice to know how to bend your fingers around a branch or turn your eyes in a particular direction.

If we can offer people the opportunity to have predictable repeated experiences they will have the chance to learn more about the world. As we repeat experiences they get more from them each time. Research in various fields of sensory engagement work–  for example, in sensory stories and multi sensory rooms – shows a common trend. At first you are unlikely to get much response from someone having a new experience but if you repeat these experiences in a predictable way responses will gradually increase until eventually they peak and then begin to drop off.

Think about a place you visit  – could you create a predictable pathway around it for someone? We often do the same things when we visit a place. Could you organise your visit to create a little ritual around all or part of it? Building verbal cues into this predictable path will help the person ready their senses to take in the experience you are offering them. These can be very simple and factual; for example, saying: “Feel the plants”. You would need to decide in advance how to phrase verbal cues so they follow the same pattern. My Kensington tour was told a historical narrative as we moved around the King’s state apartments.

Once you have the route and some verbal cues, what is then needed is the most important part: the sensory experiences. Choosing sensory experiences relevant to the early phases of sensory development means you can include more people. What sorts of experiences are most likely to resonate with them? The way the experiences are facilitated will also alter their quality and the ability of people to connect with them. They can also be used to support memory, communication, cognitive development, mental well being, learning, concentration, and engagement with the world.

Before creating your sensory tour I would advise visiting the place and really sense it yourself. Try to think with just your eyes, registering what they are drawn to. Is there a bright point of light against a dark background, something flickering, something red standing out? Don’t use your brain to decide what is interesting. For example, a map is only interesting visually if you understand that it is a map that shows you a place. If you look at it with your sight and not your brain, it’s probably just a dull sheet of paper.

Move along the route you have planned and think with each of your senses. Try to cover them all in the course of your tour so when you bring the person to experience the tour they have all of their sensory systems stimulated. We have 33 sets of neurons that control our sensory systems but an ideal tour will have less than ten stopping points in it.

Once your sensory tour is developed, enjoy it with the person you support and try to visit regularly, if possible at the same time of day so that the different experiences of the tour are as similar as possible. Over time you’ll notice the person you’re supporting responding to and engaging more with the environment around them. You will have helped them make a real connection with a part of their community.

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BASE (British Association of Supported Employment)’s 11th conference November 2016

Community Living 

Community Living

Work, health and disability: improving lives

The Department of Work & Pensions’ Green Paper was the main topic of the discussion at BASE (British Association of Supported Employment)’s 11th conference attended by Rosemary Trustam.

The conference reflected BASE’s unwavering passionate and committed championing of supported employment. DWP speakers confirmed that the key principles of work and health programmes would be personalised, integrated and localised. The Department intended to use BASE to test their supported employment model and then scale it up. A more personalised offer will start with better trained Job Centre Plus (JCP) staff and help from community (third sector) partners, with experience or expert professional knowledge, to help job centres get the expertise.

The Green Paper target disability group is mental health but there will be significantly reduced funding despite the extra resources promised. Pilots will be set up In partnership with local authorities’ supported employment services in learning disability and autism to see what works with the most challenging people.  However, supported employment services are felt vulnerable to local authority cuts. Links with Education Health and Care planning are being explored and the DWP plans to offer more supported work experience for young people with mental health issues.

The essential values of supported employment are real work, real work settings and real money at the going rate of pay. People are placed in jobs and trained in situ, comprehensive profiles of the individual are built, with a full job analysis (including job carving) and job matches, to develop a placement plan.

Timothy Broadhurst was the BASE award advocate for supported employment’s success in his work for Timpsons Ltd, winning the David Grainger Award, presented by Liam Bairstow of Corrie fame. Liam charmed us in his keynote speech in which he paid tribute to his Corrie family’s support and confessed to feeling nervous speaking to such a large audience.

Derby Council’s active citizenship and Assets-based Community Development (ABCD)  approach with adults with severe learning disabilities showed how engaging more widely develops the foundations  on which meaningful and sustainable employment can be built. Local Area Coordinators (LACs) get to know people in their community – groups, businesses, and people struggling – and work out how to link them to get a good life.

Tom had lost his mum and dad. The LAC heard about his plight from a local shopkeeper and contrived to meet him there. When they were invited to his home, the unopened mail revealed that he was getting no benefits and that there had been some police involvement due to shoplifting. The LAC involved the food bank and helped to get his benefits, thus averting a crisis. After volunteering for a local community group, Tom ended up employed in an M&S warehouse. At Christmas he brought a £10 contribution for, as he said, “someone else in the same situation”. He became a ‘community asset.’

A coffee morning set up using the college transition group leavers became sustainable with help from members of the local community. Three adults helped an autistic young man with complex needs to become independent. He now has his own flat without social care support, five minutes from his family home and mum has a job and her own social network.

After eight months, Derby University’s evaluation found potential savings potential of £1.3-£1.4 million if replicated across ten wards. Derby Council have seen how developing local lives diminishes the need for formal services.

For employers, Liz Stanton’s work in IKEA Edinburgh was inspirational. She had turned round the business’s view of employing disabled people, overcoming staff’s initial nervousness by being present and engaging.

Jenny, was a 17-year-old with no speech who covered her face. Her parents were deaf and used British Sign Language at home. She now meets and greets customers, signing them through the store as a paid job at IKEA.

Derek with no sight uses his sense of smell to get round. He works in the candle shop, also meeting and greeting and helping non-visual people.

Eve without speech or legs, uses an Ipad pressing buttons to answer people’s questions, such as, ‘Where’s the toilets, the first aiders?’ etc.

Wales’ Engage to Change project with a five years Big Lottery Fund’s Getting Ahead 2 grant of £10 million will work with 800 employers to help 1,000 young people with learning disability and/or autism develop their employment skills through paid work placement.

Newham Council’s Workplace Supported Employment Team won BASE’s team award, increasing their employment rate for people with health and social care needs from 2.8% in 2011-12 to 7.8%.  (For others see http://base-uk.org/base-awards-2016) For presentations of these and other workshops see http://base-uk.org/2016-conference-workshops

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‘Transforming health and social care’ – Adults Commissioning conference 2016

Community Living 

Community Living

— Spring 2017

Rosemary Trustam attended the annual conference of the national commissioners entitled ‘Transforming health and social care so that we all stand together’. The National Commissioning and Contracting Training Conference (NCCTC) – Adult Services – focused on how health and social care could work together to achieve savings and improve outcomes.

The message from Margaret Willcox, ADASS Vice President (President Elect) was that we have to “really put the individual at the centre of working out their needs and controlling their care, with a system of care and support designed with their full involvement and tailored to meet their unique needs” (1).

More personal health budgets joined up with social care personal budgets would develop patient power and influence learning, said James Sanderson Director of Personalisation and Choice NHS England.

Research carried out at Newcastle University, reported by Toby Lowe, threw doubt on the effectiveness of outcomes-based measures. They tend to divert people into providing data on proxies, he said. Devolving judgement to the frontline is more likely to improve outcomes and he advocated a positive errors culture to promote learning.

Other presentations also featured transformative ways of saving money which would also improve things for people. Triggered by its huge budget cut, The Wigan Deal’s asset-based approach resulted in £100 million savings whilst improving outcomes. Genuine engagement with its citizens and other stake-holders and investment in frontline staff resulted in a workforce of community connectors, link workers and volunteers who knew their community ‘patch’ and helped people to engage in activities.

Walsall’s Metropolitan Borough Council and Clinical Commissioning Group underwent a different transformation prompted by the need to make substantial savings and a new unfunded need for autism services. Four housing support services’ contracts worth £1,059,000 were reviewed and, following extensive consultation, led to the development of some resilient community and locality models, differentiating service needs. This delivered £785,990 savings and a new autism Befriending service and an autism community outreach service (2).

Referring to the social care recruitment crisis, Thea Seville from Skills for Care said dependence on EU workers is highest in London at 13% (7% is average). Turnover is 33% in domiciliary care with 11% of domiciliary care jobs and 5% of residential care jobs vacant at any time. “There is evidence”, she said, “that recruiting on values reduces turnover. If we get it right, we can retain an experienced ‘core’ of workers of at least five years (55%).”

Bournemouth’s Proud to Care Partnership of key employers and stakeholders found that sharing solutions and innovative practices a positive way to tackle recruitment. Helped by pump-priming and publicity from commissioners, social care vacancies were advertised as being for the right people with the right values and behaviours. Commissioners offered free training in NVQs and more specialist areas as well as running regular meetings and maintaining regular phone contact with providers.

Other contributors described a pilot allowing workers to agree with their clients to use their hours more flexibly, making the work more interesting, motivating and person-centred;

A project to influence schools and colleges to consider social care careers positively; opportunities from the new apprentice levy, and talks to16/17 year-olds at the Prince’s Trust as part of a training programme.

The final question posed to commissioners was whether they can maintain a vibrant workforce if they are not commissioning a fair and reasonable rate (3).

(1) https://www.adass.org.uk/distinctive-valued-personal-why-social-care-matters/

(2) http://www.local.gov.uk/web/guest/publications/-/journal_content/56/10180/7643400/PUBLICATION)

(3) http://www.ncctc.co.uk/presentations/nov-2016/

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‘Supported living – a service or a life?’ Learning Disability England’s first conference 2016

Community Living 

Community Living

— Spring 2017

Learning Disability England (LDE)’s first conference since they joined up with H&SA showed the resilience of its members in its determination to continue to speak out on behalf of people with learning disabilities. Rosemary Trustam was invited to report.

The new organisation is offering membership at £12 a year for individuals and £25 for self-advocacy groups in its drive to swell its learning disability voice which is much needed given the planned withdrawal of funding for the National Forums and threatened loss of funding of local self advocacy groups.

Gary Bourlet  leading the English self-advocacy movement and Alicia Wood, who brought the strength of H&SA into LDE, opened the conference identifying the increasing ‘servicisation’ of what should be people’s own secure homes.

Suzy Fothergill, chair of the Association of Quality Checkers (AQC) said, “People’s homes are not always like my home”. People often don’t have things that tell their story, like pets or dirty laundry baskets. People should be getting out and about more rather than tidying up. “Good support is like good cake”, she said. “Only the person who tastes it can tell you if it’s right for them.”

Sammy Butcher, expert by experience and ‘ freedom fighter’, described her journey from home, with her mum nervous about her moving out, via a service where she was expected to fit round staff rotas and routines, with staff not respecting her home. With the help of her sister Hazel and friends and a facilitated community circle, she recruited her support to her own job description and guide. She now shares a privately rented spacious flat with friend Barry. Sammy urged others not to give up and keep speaking out. “Tell your family you love them but you want to fly. If you know your rights you can push through a barrier.”

Sally Warren Paradigm, co-author of REACH standards support for living said, “It’s about having control over how you live; with whom you live; where you live; who supports you and how you’re supported.

Rachel Mason, a mum with two sons with learning disability and autism, told how person-centred planning changed their lives.  Shaun’s school, 20 miles away, meant his world was just school and home. They swapped a respite unit for Direct Payments using a PA to help with more relevant things for school and his developing adulthood. Instead of the social worker’s offer of a three years £1700/week residential placement miles away, he now lives in his own purchased home locally (through www.my safehome.info) with a 24 hour support service designed, costed and recruited by them. With the family’s involvement in their community, Shaun is visible, feels welcomed, has relationships and can join in activities he likes. He contributes to the local community who help keep him safe. The question for care providers was, “How can you ‘be a Rachel’ and help staff to do it’”?

In the panel discussion, Rob Grieg of NDTi, referring to what he called Rochdale’s “wrong and illegal” proposal to end supported living contracts and effectively force people into residential care, drew attention to the policies and laws underpinning people’s rights to remain in their own homes, such as Valuing People and Valuing People Now, the Care Act and Equalities legislation giving disabled people the right to live independently. Residential accommodation removes important rights, including control over where you live. Savings can only be made by reducing quality, cutting staff and providing less personalised services yet people who challenge are best supported with a service designed around their needs.

Public law solicitor Kate Whittaker reminded people of their rights under the law, including the power of the ‘wellbeing principle’ in the Care Act.  She emphasised that local authorities have a duty to promote the individual’s wellbeing, including providing suitable living accommodation.

With decreasing funds over the next five years, Deborah Holland from the Care Quality Commission asked how their inspections can better know what’s really happening and ensure the most vulnerable people’s consent to visits and observation.  (Deb.holland@cqc.org.uk)

David Brindle chairing the panel warned that the proposed changes in supported housing funding and local authority cuts risk  pushing services towards more institutional models. Their challenge was not to allow such a take-over and to help people demand their rights, and to spend money differently.

Finally, Sarah MacGuire Driving up Quality (DUQ) announced the winners of the four categories from the LDE steering group and AQC’s shortlisted organisations, signatories to the (DUQ) code: Innovation –MCCH ; Openness and transparency – Future Directions;  Making a difference to people – Affinity Trust; Making a difference to the culture of the organisation – Thera East  (DUQ). It reminded us that LDE is also about improving quality.

For the shortlisted organisations under the four categories and the day’ presentations – see

http://www.housingandsupport.org.uk/supportedliving-aserviceoralifeconferencesummary

 

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Lives – not services

Community Living 

Community Living

— Spring 2017

In a tough environment of budget reductions, workforce problems and provider struggles, Rose Trustam reports from three conferences focusing on the positive:  community development, real achievement and evidencing  what works.

(NB Full conference reports available to subscribers on the website home page)

Commissioners conference (www.ncctc.co.uk)

Margaret Willcox (President elect of ADAAS) stressed the need to ‘really put the individual at the centre of working out their needs and controlling their care, with a system of care and support designed with their full involvement and tailored to meet their unique needs. …a life not a service’  

Key points from the conference speakers and research presentations:

  • More personal health budgets joined up with social care personal budgets would develop patient power and influence learning (James Sanderson, NHS England)
  • Outcome based measures don’t work – devolving judgement to the frontline, with a positive errors culture,  is more likely to improve outcomes (Toby Lowe, Newcastle University)
  • Transformative practice: the Wigan Deal‘s asset-based approach, triggered by its huge budget cut, saved £100m whilst improving outcomes for people. Its genuine engagement with its citizens and other stake-holders and investment in frontline staff, developed a workforce of community connectors, link workers and volunteers who know their community ‘patch’ and help people engage in activities.
  • A joint social care/ clinical commissioning approach in Walsall saved £750,000 by reviewing four housing support contracts and through extensive consultation developed  some resilient community and locality models, differentiating service needs including new autism befriending and community outreach services. (http://www.local.gov.uk/web/guest/publications/-/journalcontent/56/10180/7643400/PUBLICATION )
  • Social care recruitment crisis: Dependence on EU workers is highest in London at 13% (7% is average). Turnover is 33% in domiciliary care with 11% of domiciliary care jobs and 5% of residential care jobs vacant at any time. Recruiting on values reduces turnover and, when done well, can result in an experienced ‘core’ of workers retained for at least five years (55%) (Skills for care)
  • Bournemouth has established ‘Proud to Care’, a partnership of employers and stakeholders sharing solutions and innovative practices. Their initiatives include commissioners helping to promote vacancies for staff with the right values and behaviours, free NVQ training, workers able to agree flexible hours with clients, working with schools, colleges and the Prince’s Trust and using the apprentice levy.  http://www.ncctc.co.uk/presentations/nov-2016/

 British Association of Supported Employment (Base)

The Department for Work and Pensions (DWP) have published a Green Paper for consultation, Work, Health and Disability: Improving Lives, and this was a main conference concern. DWP speakers confirmed the key principles of work and health programmes delivery as personalised, integrated and localised, and intend to use BASE to test their supported employment model and then scale up. A more personalised offer will start with better trained Job Centre Plus (JCP) Expert and experienced  Community/ Third Sector partners will support job centres get the expertise. With funding significantly reduced  the Green Paper target disability group is mental health.

Key points from conference speakers and presentations:

  • Suggested  partnerships with local authority supported employment services  in learning disability and autism pilots to see what works with the most challenging people.
  • DWP intends more supported work experience for young people with mental health issues.
  • The essential values of supported employment  are real work, real work settings and real money at the going rate of pay. Supported employment  places people in jobs and trains in situ, builds a comprehensive profile of the person, does a full job analysis ,job matches, and develops a placement plan.
  • Timothy Broadhurst was the BASE award advocate for SE’s success in his work for Timpsons ltd, winning the David Grainger Award, presented by Liam Bairstow of Corrie fame.     
  • Derby Council’s active citizenship and assets-based community development (ABCD)  approach with adults with severe learning disabilities showed how engaging more widely develops the foundations  upon which meaningful and sustainable employment can be built. Local Area Coordinators (LACs) get to know people in their community, working out how to link them to get a good life. After 8 months, Derby University’s evaluation found a significant financial impact with a potential of £1.3-£1.4m savings if replicated across 10 wards.  Outcomes were 80% in volunteering/ work and Derby council have seen how developing local lives diminishes the need for formalised services.
  • For employers, Liz Stanton’s work in IKEA Edinburgh was inspirational,  turning around the business’s view of employing disabled people and overcoming staff’s initial nervousness by being present and engaging.
  • In Wales the  Engage to Change project with a  five-year £10m Big Lottery Fund grant will work with 800 employers to help 1,000 young people with learning disability and/or autism develop their employment skills through paid work placements.
  • Newham Council’s Workplace Supported Employment Team won BASE’s team award, increasing their employment rate for people with health and social care needs from 2.8% in 2011-12 to 7.8%.

For presentations of these and other workshops see http://base-uk.org/2016-conference-workshops

Supported living – a service or a life?

This was the first conference of Learning Disability England, who expressed a determination to  support and challenge in their newly  joined up voice, in the light of the planned withdrawal of funding for National and local self-advocacy forums.

Key points from conference speakers and presentations:

  • Leading self-advocate Gary Bourlet and Alicia Wood of Housing Support Alliance highlighted the increasing ‘servicisation’ of what should be people’s own secure homes. Proposed changes in supported housing funding (See p. 9) and Local Authority cuts risk pushing services towards more institutional models.
  • Suzy Fothergill chair of the Association of Quality Checkers (AQC) argued that service-type homes are not laways like other people’s homes and lack things that tell the stories of people who live in them.  Sally Warren of Paradigm emphasised that it is about having control over how you live; with whom you live; where you live; who supports you and how you’re supported.
  • Sammy Butcher a successful expert by experience and  ‘ freedom fighter’  described her journey from family home, first to an inflexibly staffed service but them eventually to her own place where she recruited her own staff and was supported by a community circle of family and friends. Sammy urged others not to give up and keep speaking out. ‘Tell your family you love them but you want to fly… if you know your rights you can push through a barrier’.
  • Rachel Mason, a mum with two sons with a learning disability and autism, told how ‘person-centred planning changed their lives’.  Using direct payments one son now lives in his own purchased home locally (through www.my safehome.info) with a 24 hrs support service designed, costed and recruited by the family. They rejected an initial social worker offer of a £1700 per-week residential placement miles away, and the son is now firmly embedded in his local community.

In the panel discussion, Rob Grieg of NDTi,  referred to Rochdale’s ‘wrong and illegal’ proposal to end supported living  contracts and effectively force people into residential care.  Policy and law support people’s rights to remain in their own homes – Valuing People and Valuing People Now, The Care Act and Equalities legislation all support the right of disabled people to live in dependently. Residential accommodation removes important rights, including control over where you live

Kate Whittaker, public law solicitor, reminded people of their rights under the law, including the power of the Wellbeing principle in the Care Act, which spells out local authorities’ duty to promote the individual’s wellbeing, including suitability of living accommodation.

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