Letters: People earn more from work than money & Beware the mini institutions

Community Living 

Community Living

— Summer 2018

Letters in the mailbag

Write to Community Living at simonj@jarr.demon.co.uk. Note: all letters may be edited

People earn more from work than money

Following your issue on employment, (CL 31:1), recent NHS Short and Long Term Care (SALT) figures reveal a worrying trend in national employment patterns for people with learning disabilities.

From a high of 6% in 2014-15, they fell to 5.8% the following year then 5.6%. Most of those in paid employment work for less than 16 hours per week.

Kudos to Bexley – the only council to report a rate of more than 20% in its area. Congratulations also to North East Lincolnshire, which achieved a 15% increase, the most nationally, over 2014-17. They prove that people with learning disabilities can work successfully.

Fourteen authorities – Birmingham, City of London, Hull, Isles of Scilly, Lambeth, Manchester, Nottingham, Oldham, Rutland, Sandwell, South Tyneside, Telford & Wrekin, Warrington and Wigan – report levels of 1% or less. They should be asking themselves some tough questions – as should those seeing sustained, substantial declines.

Why does this matter? Work means far more than money and productivity. It means self-esteem, confidence and social opportunities. People supported into employment by Dimensions have real jobs where they can fulfil work aspirations and achieve social and economic inclusion. Dimensions also directly employs more than 50 people with learning disabilities as quality checkers, as film makers, on the reception team and in other roles.

But the story that prompted me to write this letter does not come from any of them. It comes from a thank you letter from a young autistic man called Corey,

If you have any influence over how companies and councils prioritise employment for people with learning disabilities and autism, please use it.

Duncan Bell Head of marketing, Dimensions

Beware the mini institutions

Robin Jackson’s column (CL 31:2) summarises the trend towards miniature institutions and services from the past.

Unless a disabled person capable of living in a way that suits them is allowed to do so, they will always depend on the “institutionalisation” of services as dictated by others – more so if they are not capable.

The move towards a culture of provision by profit rather than of knowledge and care is leading to a culture of “bums on seats based on costs” and “if we can’t afford to take you in” then “disappear quickly” – you don’t matter to us.

The case of Scope illustrates such troubling outcomes. I write as the parent of an adult with limited capacity who has used their services for many years.

Cerebral palsy is complex and everyone affected is an individual; without the expertise gained from a specialist organisation such as Scope, expertise and resources for those individuals, families and professionals in the community will be lost.

Then off we will go again! People will be tucked away (especially in later life) where they don’t matter: in old people’s homes, where care staff have enough on their plates; hidden among people with dementia; unable to cope in a strange, hostile environment; unable to make their views and wishes known because of the lack of appropriate communication; and unable to interact with peers. They can become trapped in a horrifying cycle of misunderstanding and abuse.

This is indeed a troubling sign of things to come. Perhaps it is time for  the wheel to be reinvented.

Betty Fisher Chester

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Simon Jarrett: Exclusion for eternity – editor’s comment

Simon Jarrett 

Simon Jarrett

— Summer 2018

When exclusion starts, it doesn’t stop – even after you die. In this issue, Nigel Ingham’s powerful article (page 16) about the Calderstones Cemetery scandal captures a malaise that runs far deeper than a row over a burial site.

The remains of 1,200 women, men and children who once lived in Calderstones, a former long-stay asylum in Lancashire, lie beneath a neglected, vandalised and untended site. No memorial shows who lies there; no respect or care is paid to their memory.

Now, in a final insult, developers wish to build a car park over their resting place. They were neglected in life – banished to the harsh, unchanging, grinding daily life of the asylum, from which they never returned to the society into which they had been born. And now they are neglected in death – for a second time hidden from sight, excluded, ignored and forgotten.

However, just as alliances of people with learning disabilities, families and their supporters fought to end the cruelties of the long-stay hospital system, so a new alliance has formed to end this act of disrespect to the dead.

Ingham writes about the campaign in which he is involved, driven by former residents, staff, families, local residents and people with learning disabilities more generally to prevent this vandalism and ensure a proper memorial to those who lived and died in Calderstones.

At Community Living, we fully support the campaign and urge our readers to do the same. A society that excludes the memory of people in death in the same way as it excluded them in life is a society built on a lie.

Having a good life – without professionals

Once you are seen as a person who does not belong, your grip on any sort of foothold in society quickly vanishes.

For many, it is difficult to imagine just how terrifying a prospect this is. You live in a society but you are not seen as part of it. People have rights – but you lack them because it is believed you cannot understand them. People are free within the law to do as they wish – but not you, because you don’t know what you wish. Others have jobs, their own homes, family life, social networks – whereas you live in a sort of clinical, bureaucratic netherworld where you always aspire to achieving these goals, and a small army of paid professionals are there to support you towards reaching them, but you never quite get there.

In this issue (page 27), our columnist Jan Walmsley discusses three events she has attended this year where people with learning disabilities seemed to be free, in control and able to be themselves. They were an art installation, an immersive theatre production and a musical performance. What these events had in common was that “there was not a psychiatrist, psychologist, antipsychotic drug or support worker in sight”, she writes.

People are also getting the opportunity to be part of an ordinary family in their community thanks to the work of Shared Lives (page 10). Extraordinary work is also being done by Getta Life (page 19) to enable people to make friends outside the “learning disability world” to which they have been consigned.

In all these cases, a good life is one in which people are not continually risk assessed, clinically evaluated, controlled and “kept safe” by the professional army that seems to own them.

Of course support workers, social workers, psychologists and (sometimes) psychiatrists are needed, and many do heroic work – but their job must be to make people free to be in the world, not to put barriers around them.

Simon Jarrett

Editor

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Alliance to Parliament #SolveSleepIns

Community Living 

Community Living

#SolveSleepIns Alliance Day of Action

TODAY – 27th June, an Alliance covering 34 or more organisations have been in the Houses of Parliament talking to MPs about the issues with the sleep-ins

What the Alliance is saying today is that the sector is in crisis due to the mis-handling of the sleep-in back pay bill and that although theoretically the Local Authorities(LAs) are funded to provide sleep-ins by Central Government , neither providers or LAs haven’t been so funded for the last 6 years – not have personal budget-holders.

They say that the consequences for people depending on care may find it more difficult to get their needs met with less choice and control and maybe less likely to support more independent lives in the community. They suggest that care staff may be made redundant but given the recruitment crisis and that people will still need support this may be less persuasive. Are major risks to crucial community services with more closures likely , more contracts being handed back (already happening with the pressure on adequately funding) and further erosion of the quality of care.

What do they recommend?

They suggest that the Government should fully fund all sleepin back pay and that HMRC start a time-limited fund which pays workers back directly.  They also point out that whilst the scheme ensures that low paid workers get their back-pay, many social care providers are local or small organisations and charities – not equipped to efficiently locate their past employees from the last six years. Back pay going directly from the Government to the workers would bypass both Local Authorities and care providers, getting past any potential complications with State Aid rules.

They assert that the sleep-in crisis must be solved by September. Many providers are obligated to start planning future budgets in April and the sector will be unviable by the 2nd quarter of the next financial year.

What About Mencap’s Appeal?

Whilst it would also support that the Government should be liable for the back-bill if it is payable, Mencap was taken to an Employment Tribunal in 2016 where it was ruled that the employee should have been paid the national minimum wage for the sleep-in. Mencap took the case to the Court of Appeal in March on the basis that the National Minimum Wage Regulations 1999 15 (1) says: “In addition to time when a worker is working, time work includes time when a worker is available at or near a place of work, other than his home, for the purpose of doing time work and is required to be available for such work except that, in relation to a worker who by arrangement sleeps at or near a place of work, time during the hours he is permitted to sleep shall only be treated as being time work when the worker is awake for the purpose of working.” – See more at: https://www.civilsociety.co.uk/news/watershed-mencap-legal-case-heard-in-court-of-appeal.html#sthash.M9VGLXyI.dpuf

Is paying support staff the minimum wage to sleep-in right or the best use of resources?

Many of us also believe that paying the minimum wage for overnight sleeping is not where funding should be invested. In the context of the years of austerity where LAs have lost a huge amount of funding whilst the care needs have increased, and where they have effectively passed this onto providers, low-paid support staff’s wages, conditions and support have all been cut to the bone. For support staff often working alone in community settings with people with a range of more complex needs to be paid the minimum wage is not the right level of reward, but is resulting in the increasing difficulty of recruiting staff of the right calibre.  We have some amazing people working in the field but we have gone backwards in the last few years in support, development and training. Getting and retaining people however committed they are means good wages with incentives to train and develop and a good career pathway based on values, skills and proven competence. It looks as if we’re in danger of encouraging support staff to be over-protective if they rely on the sleep-in pay to get a decent wage, so wanting to retain the need for sleep-ins when some people may learn to manage with on-call support only. It also encourages commissioners to commission congregate settings to save money by sharing sleep-ins. However these keep people apart from their community, don’t provide for the range of needs but also are likely to be the next generation of institutions… and without external oversight makes abuse more likely.

We need no perverse incentives – what we do need is good pay and conditions that recognise the values and skills needed.

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Nico Reed’s tragic death – another damning report

Community Living 

Community Living

— Summer 2018

Oxfordshire CCG report outlined another catalogue of concerns around the care of Nico Reed found dead in 2012 at a supported living facility having choked on his vomit. His parents feel his death could have been prevented but the report echoed the inquest in saying they couldn’t be sure of this despite the failures outlined. However, it does identify yet again the failures also in communication with the family. This was once again Southern Health NHS foundation Trust again – where similar findings were seen in the death of Connor Sparrowhawk who died in their care in the bath in 2014. In the face of the NHS review of 103 deaths of patients with learning disabilities in 2016-17 finding of 13 dying as a direct result of failures to provide adequate, safe and prompt care, it’s difficult not to see this as yet another given the lack of checks which should have been done, staff unable to do basic life support procedures, no suction equipment and the delay in calling for an ambulance… It also leaves one wondering whether had the issues been identified at the time Connor’s support might have averted his death..

See https://www.theguardian.com/society/2018/jun/27/nico-reed-death-report-finds-series-failings-care-home for a fuller report.

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Government ignoring NAO on UC roll-out

Community Living 

Community Living

‘Rolling out Universal Credit’ – the latest report by the National Audit Office – finds real concerns https://www.nao.org.uk/report/rolling-out-universal-credit/

The concerns include: that 38% of claimants can’t deal with identification on line; 20% get late payment an average of 4 weeks late; the pressure on local agencies including a greater demand for advisory and advocacy services; rent arrears have risen; an increase in the use of foodbanks in at least some areas where Universal Credit full service has been introduced, and overall finds its projections on savings and benefits unproven…

The Government appear to be sticking their fingers in their ears and it’s hard to see any responsiveness to issues while if the early roll-outs have piloted anything… what has the learning been?

Esther Mcvey, the Minister, gives scant attention to the report in her statement  see https://hansard.parliament.uk/commons/2018-06-21/debates/E234119F-DC84-4CB4-A814-69CC6A1441E8/UniversalCreditAndWelfareChanges

‘Frank Field, the chair of the Commons work and pensions committee, said: “Rather than that banal offering, which did nothing for our poorest constituents, a more realistic statement from the secretary of state would have acknowledged that universal credit is helping to transform the welfare state from one which protects people from poverty, to one that drives them into destitution.”‘ see fuller report  https://www.theguardian.com/society/2018/jun/21/government-must-wake-up-to-universal-credit-flaws

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BAPS of the Month – April

Community Living 

Community Living

Community Living magazine is proud to be a sponsor of the BAPS (Bl**dy Awesome ParentS) Awards. This month’s award goes to Adele Hanlon who’s ‘worked night & day for years now to get her son home’ and has ‘ helped so many other parents quietly & with enormous love & empathy’.

For more information on people’s opinions on why Adele Hanlon should get the award or on how to put others forward – see baps-of-the-month-april/

Community Living magazine as many others has been inspired by the passion, caring and sheer persistence of those parents who never give up to get what’s right for their offspring. They are indeed an inspiration to us all.

If you have thoughts about other parents who you feel deserve to be put forward then check on the website to recommend them.

 

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New release by Heart ‘N Soul artists 15th May

Community Living 

Community Living

PRESS RELEASE 4 MAY 2018

Heart n Soul artists Too Hot for Candy collaborate with award winning beatboxer Grace Savage on new single ‘Piece of Me’

Scheduled for digital release on Tuesday 15 May, ‘Piece of Me’ is the latest track from Heart n Soul artists Too Hot for Candy who have collaborated with beatboxer Grace Savage to create an addictive new dance tune using Korg technology.

The trio – who cite Prince and Sly and the Family Stone as major influences – have built a following on the pure unadulterated fun of their live shows, mixing tight vocal harmonies, huge synth basslines and gospel drums with a touch of post-punk that sounds like ESG & Liquid Liquid partying with Stevie Wonder. With this latest release they’ve created a guaranteed party playlist must-add. An official music video accompanies the track, with members of the band and Grace Savage cast in the role of downtrodden office workers who bring the joy to their daily grind through music.

‘Piece of Me’ is the second in a series of artist collaborations facilitated by London-based creative arts organisation Heart n Soul as part of its SoundLab project, which explores ways of using innovative music technology to encourage people with learning disabilities to create music and sound experiences. The work has been supported by digital commissioning agency The Space and follows the first collaboration with Dean Rodney Jr and the band Ravioli Me Away which used mi.mu gloves and Ableton technology. Together they produced the catchy track and music video for ‘Dean TV Girls’. As part of the process, ‘Dean TV Girls’ and this new release are both accompanied by four ‘How to’ videos explaining how innovative technology has been used to make the new digital tracks. Too Hot for Candy and Grace Savage offer step-by-step insights into how they used Korg technology to create ‘Piece of Me’. The videos are all available to watch at this private link ahead of the release.

“We really enjoyed working with Grace. She’s a really good beatboxer and her music is brilliant. She brought a new element to how Too Hot for Candy works. I loved working with the Korg technology too. It was a learning curve and made the music sound different – a really interesting experience!” – Kali, Too Hot for Candy

“Working with Too Hot for Candy and Heart n Soul was an incredibly uplifting experience. The creative process was refreshingly free and instinctive and all about the pure joy of music (no ‘overthinking’ artistic egos in the room!). I left the studio with a huge smile on face every time.” – Grace Savage

‘Piece of Me’ will also be available as a free download from the Too Hot for Candy Bandcamp page on Tuesday 15 May. The videos will be available to watch online at HeartnSoulSoundLab.com.

Too Hot for Candy

Kali, Arthur and Isaac bring you a sound they describe as ‘way funky’! Inspired by Prince and Sly and the Family Stone and with big beats and funky drumming, this is music you can party to! Their first self-titled EP was released in June 2017, and they have performed at Heart n Soul’s Beautiful Octopus Club Festival, Squidz Club and Big 30 Summer Takeover, as well as at music events and venues around the country including The Rock House and Blue Camel Club in Brighton.

 Grace Savage

Grace Savage is an independent London based singer, beatboxer, and actor. Listed as one of ELLE magazine’s ‘100 Most Inspiring Women’, the young UK artist and 4 x UK Beatboxing Champion has since been shortlisted for a number of competitions and funding opportunities, winning the “Public Choice Award” for the B-side Remix Project as well as being selected for the Emerging Artist and Transmission Fund through Help Musicians UK. In 2018, Grace has been nominated for “Best Female Solo Act” and “Best Songwriter” at the Unsigned Music Awards alongside impressive acts such as Ray Blk and Jorja Smith. She was also selected from over 5,000 entries to compete in the Isle of Wight “New Blood” Quarter-Finals alongside 40 other live acts. gracesavageofficial.com

SoundLab

Taking the strapline ‘fun and creativity through music and technology’ as its overarching objective, SoundLab is an innovative digital music making project from Heart n Soul. It explores ways of using music technology to encourage people with learning disabilities to create music and sound experiences. Collaboration is central to the work of SoundLab and the project’s key aim is to improve accessibility in digital music making and share exciting new ways of making digital music with a wider audience, benefiting everyone. heartnsoulsoundlab.com

Heart n Soul

Heart n Soul is an award-winning creative arts company and charity that believes in the talents and power of people with learning disabilities, providing opportunities for people to discover, develop and share this power and talent as widely as possible. Running for over thirty years, Heart n Soul provides opportunities for people to take part in creative activities, to train in a new skill or develop their artistic talents, with collaboration and sharing central to what they do. As a result, people with learning disabilities have more choice, are more connected, have more confidence and are able to work towards more independent lives.

Heart n Soul reaches over 30,000 people annually, through live events, creative sessions and online, and this continues to grow each year. heartnsoul.co.uk

The Space

The collaboration between Too Hot for Candy and Grace Savage is supported by The Space It is a commissioning and development organisation funded by the BBC and Arts Council England, committed to supporting and facilitating the UK arts sector to realise its digital ambitions. The organisation commissions arts projects and provides a production and distribution pipeline to ensure that these projects reach a wide and diverse range of audiences. thespace.org

More Heart n Soul releases

Heart n Soul have an ever-growing network of artists with and without learning disabilities. Following the success of their first album ‘Marzipan Transformations’, Heart n Soul band The Fish Police, who recently performed live at South by Southwest in Texas, USA, have released a new EP ‘Edge Myself to the Middle’. The band’s performance at the festival was counted as one of the top to see by NPR and reviewed as one of The Sun’s top 10. Check out the new EP here and watch the new music video for ‘Something Interrupted’. Heart n Soul’s award-winning artist Lizzie Emeh is due to release the final instalment of her album in three parts later this year. The first two EPs, ‘The Clan’ and ‘My Baboo’, can be found on Lizzie’s website. Lizzie launched her debut album ‘Loud and Proud’ in October 2009 and made history as the first solo artist with a learning disability to release an album of her own songs to the general public. She describes her sound as “eclectic, wide-ranging and with lots of soul”.

Find out more about Heart n Soul’s artists at heartnsoul.co.uk

 

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Government response to damning disability benefits report falls short

Community Living 

Community Living

The government’s select committee chair Frank Field expresses disappointment at the Government’s response to their damning report. Whilst they promise to record PIP assessments and review the application form, they won’t send copies of the assessment report unless asked and there’s no indication of any move to make the 3 private contractors more accountable for their performance. 68% of PIP appeals overturn their assessments so it’s difficult to see how this can be tolerated – let alone given the very severe impact such poor assessments and withdrawal of benefits have had on many disabled people. Maybe people should tell their MPs of their concerns at the continued refusal to make contractees accountable?

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LDE announces new CEO appointment

Community Living 

Community Living

LDE announced the appointment of their new Chief Executive as Samantha Clarke, taking up the post in July.

Sam is particularly known for her  work as CEO at Inclusion North which illustates her commitment to real inclusion and leadership by people with learning disabilities. She is currently CEO at Local Area Coordination Network CIC . With ‘Sam at the helm’, under the direction of LDE’s elected Representative Body we’ll be sure to see progress nationally of LDE’s voice. Congratulations Sam and LDE at a brilliant appointment.

 

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Bl**dy Awesome ParentS (BAPS) Awards

Community Living 

Community Living

— Spring 2018

Bl**dy Awesome ParentS Awards

Community Living magazine is proud to announce our sponsorship of Bringing Us Together’s Bl**dy Awesome Parents (BAPS) awards.

These monthly awards aim to recognise some of the many amazing parents out there who make a real difference to their child’s developing life. Some, as we have seen in our own pages, have to battle against huge odds to get their adult son or daughter back into the community. We are sponsoring the awards jointly with Choice Support.

The March award sponsored by Community Living magazine goes to Marc Carter, a full-time carer to 3 children with complex needs amongst his other activities…despite his own significant health needs – see more at BAPS of the month March

If you would like to nominate someone, let us know. Email nominations to Community Living editor Simon Jarrett on simonj@jarr.demon.co.uk – we’d love to know who you’re nominating. Do contact them direct ofcourse and learn more at BAPS awards

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Making a visible difference & Tunnel vision commissioning

Community Living 

Community Living

— Spring 2018

Simon-Jarrett

Making a visible difference

Some remarkable achievements by young people with learning disabilities in the world of TV, film and theatre are highlighted in this issue. Actors, dancers, choreographers, film directors, animators and musicians are making their mark on the British cultural scene in unprecedented ways, and which were probably unthinkable even 20 years ago.

We are proud to showcase and celebrate their great talent and the brilliant work of those who have worked alongside them to achieve these breakthroughs. The efforts of Oska Bright in film, Creative Minds in theatre and dance and the Open Theatre Company in TV and theatre performance have all been fundamental to this cultural shift.

Most importantly, these creative young talented people have themselves put in the hours, hard work and dedication to perfect their craft and, as the old axiom has it, have probably had to work twice as hard to show they are half as good.

Many barriers remain, some of them explored (pages 18-19) by Richard Hayhow, the pioneering director of the Open Theatre Company. Nevertheless, this is a success story and, hopefully, one that will change perceptions across the wider public. Nothing serves the cause of inclusion better than the routine appearance and involvement of people with learning disabilities in things we all talk about and around which we build our shared experiences. There are encouraging signs that this is gradually becoming the norm rather than the exception.

Alongside this positive development are other ways in which people are seen. People are still being denied the right to exercise their vote, while others are labelled as “challenging” – and still more are treated with the “chemical cosh” of overmedication to keep them quiet and passive. We report on campaigns to address each of these pernicious assaults on the fundamental rights of people with learning disabilities to be part of society, and to live fulfilled lives.

As we rightly celebrate the achievements of a confident new generation, for whom the incarceration and inhumanities of recent history are remembered (if at all) as a distant horror story, we must not forget those who are still mired in the legacy of that past. Not everyone can be a star, but everyone can live a life without the straitjacket of a label, without the denial of basic rights and without having their minds subdued for the convenience of others. We must fight relentlessly for their right to do so.

Tunnel vision commissioning

It is more than 10 years since the Department of Health launched the “world class commissioning” framework in 2007, which it billed as “a statement of intent, aimed at delivering outstanding performance in the way we commission health and care services in the NHS”.

The idea has been quietly shelved in recent years, retrievable only from its resting place deep in the department’s digital archives. It was, perhaps, overambitious. Most of us today would settle for something like “pretty good commissioning”. Sadly, even that seems hard to achieve, not only in health services but also in social care.

In this issue, we feature the story of the Engine Shed in Edinburgh, an excellent social enterprise that provided training, work experience and pathways into employment. Much loved by the public, generating 60% of its income through trading and getting up to 80% of its trainees into fully paid work, it was the epitome of what is sometimes called “social capital” – the networks of social bonds, relationships, goodwill and bridges that build healthy, functioning societies.

But a change in commissioning approach meant that it no longer met the local authority’s criteria for funding, and it exists no more. That was certainly not world class commissioning. It wasn’t even pretty good.

Simon Jarrett

Editor

 

 

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Farewell, Engine Shed

Community Living 

Community Living

— Spring 2018

Farewell, Engine Shed

The Engine Shed was a social enterprise that trained young people, helped them into work and broke down barriers. Its former chief executive Marian Macdonald tells its story

 

The Engine Shed was a thriving social business that provided training for young people with learning disabilities in a working environment to help them move into paid employment.

Over the years, what had started as a training project evolved into a successful business with networks stretching far and wide, within Edinburgh and throughout Scotland.

It was set up in 1989 as an innovative training project, founded on the idea that work was an important way for people with learning disabilities to become as independent as possible and integrate into the wider community.

The project closed in 2015 when Edinburgh changed how it tendered for supported employment. I am writing this from the perspective of looking back over the past 30 years.

My role in developing and leading this organisation began in the spring of 1988. Eighteen months before, I had been a social worker based at local charity Garvald Edinburgh. Here, I worked behind the scenes as part of a steering group that explored ideas around setting up a vocational training resource.

These were exciting, pioneering times. Organisations that worked with and advocated for people with learning disabilities were beginning to challenge why they were excluded from the workplace – along with those they were working with.

We also explored what resources to support people to make a successful move into paid jobs should look like. Until then, when young people left school and/or completed a one-year extension course at a local college, it meant a move to a day centre offering a combination of social and craft activities. And, 20 years later, they would still be there.

However, the late 1980s proved to a turning point and a combination of ideas, optimism and, crucially, new funding streams enabled us to establish a charitable limited company with funding from the European Social Fund and Edinburgh Council. This permitted us to acquire a beautifully refurbished engine shed built in the 1830s. All this was achieved in less than two years. Talk about being fast tracked.

In many ways, the project took a practical, commonsense approach. It was based on the assumption that individuals with learning disabilities had the right to the same experiences and challenges after school as other young people, and had similar needs and aspirations, including access to further education and training in a setting that matched their way of learning.

The Engine Shed offered a three-year vocational programme. Trainees were based in one of our social business work areas which included a cafe, bakery, food processing unit and conference centre. In many ways, we operated an apprenticeship model where, under guidance, young people trained, worked, learnt and developed a range of vocational and personal skills to fit them for adult life.

Out of the comfort zone

The trainees worked in an environment where doing a job well, being part of a team, making choices and decisions, having rights and responsibilities, developing their social life, achieving what they had set out to do, dealing with situations that sometimes didn’t work out as expected and occasionally feeling out of their comfort zone were all part and parcel of everyday life.

It certainly helped towards building up trainees’ resilience to deal with whatever life threw at them. It was a world away from the more protective model of services they had been used to.

An important aspect of our programme was that it offered the chance for an individual to learn in a very public, highly visible work setting and, with this as their foundation, to take one step at a time towards meeting their future goals.

The structure involved a six-month settling in period to build up a mutual understanding of their skills and future training needs, followed by an appraisal review. Parents and professionals were not automatically invited – something our first cohort of trainees found strange.

At this point in their training, a range of options was available. Alongside work at the Engine Shed, a series of weekly work experience placements were planned with local employers. These were designed to link their developing skills and growing confidence to a business setting.

These work placements also opened
up the opportunity for trainees to experiment with different jobs. This helped towards gaining an understanding of the type of paid work to aim for when they were ready to leave the Engine Shed.

Trainees also had the chance to enrol for nationally recognised vocational qualifications which were delivered in house at the Engine Shed by a tutor from the local college. This assisted them by matching their way of learning so they could link theory to the work they were doing as opposed to the more abstract classroom model. From that point, a trainee’s progress was regularly monitored and reviewed and our input adapted in such a way to meet their changing needs.

And the whole thing worked. From our base in a beautiful building that met all our training and business needs, we created a learning environment within a busy public commercial setting in the middle of Edinburgh.

This outward-looking approach, combined with the benefits of peer group learning at the Engine Shed, proved to be a winning combination. From day one it was our intention to use this as a springboard for individuals to develop, learn and move on, armed with well informed and sustainable plans for their future.

We had a high success rate of people moving into paid work of 16 hours or more a week; it averaged out at between 70%-80% and met all the targets set.

We established links with many networks that reflected and supported our diverse work, from schools and colleges to third sector organisations, employers, customers – including those using our conference facilities and selling our produce as well as those using the cafe – and funders.

Many became active partners in our everyday work. Our regular cafe customers in particular shared in the ups and downs of the lives of our trainees and cheered them on from the sidelines.

Employers worked closely with us to develop their roles in providing work experience and training to lift an individual to the next stage and, in many instances, viewed them as potential employees.

This whole process naturally broke down the barriers that excluded people with disabilities from employment. Coming into regular contact with our trainees in their work role did more to challenge people’s attitudes and prejudices than any discussions on equality ever could.

Over the years we saw many people pass through our doors and successfully move into jobs with a range of Edinburgh employers in the catering and retail sectors.

As our social enterprise developed, it provided up to 60% of our revenue with 40% coming from council funding.

The Engine Shed was a member of a network of council-funded supported employment bodies which, over a 25-year period, provided a range of options for those requiring support to get into work. However, in 2014, due to funding changes and a decision to tender supported employment provision as one commissioned service, the Engine Shed fell out of the scope of Edinburgh’s funding criteria. A strict definition of supported employment – support offered to people in the workplace – appeared to leave no flexibility for the needs of people who were not “job ready” and required extra time and input to develop their potential in a training environment with supported employment. With this loss of funding, the Engine Shed could no longer operate and it closed its doors in February 2015.

This left a huge gap in provision. People with learning disabilities who require extra support to access the work market will be denied a tried and tested resource that would enable them to take their first big step into the world of paid employment.

A lasting memory is of meeting a group of parents to share the news about the closure. One couple said they felt angry and also sad, not on behalf of themselves or their son who had benefited from his training and who was now thriving in a new job in Social Bite – a sandwich takeaway in the city centre – but for young people and their parents in the future who would no longer have access to the unique Engine Shed experience that had succeeded in transforming so many people’s lives. n

l    More info: www.theengineshededinburgh.org
l    A short film about The Engine Shed: www.youtube.com/watch?v=Lfz8A5qRvLk

l    A short animated film about the building: www.youtube.com/watch?v=8RaXMuA8bDQ

l    Lovely Recipes and People’s Stories, a book to mark the Engine Shed reaching 21 years, with a foreword by Ian Rankin, can be downloaded from www.theengine
shededinburgh.org/uploads/downloads/guide-full-with-cover.pdf

 

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The great American IQ panic of 1917

Community Living 

Community Living

— Spring 2018

Simon-Jarrett

IQ testing caused widescale anxiety that the US population was rapidly losing its intellectual powers after 1.75 million soldiers achieved alarming scores. A century later, the consequences are still being felt, says Simon Jarrett

The IQ test was invented by early French psychologist Alfred Binet. His 1908 test is the prototype for those used today.

In the 1890s, Binet had tried to define intelligence by measuring and comparing the skull sizes of clever and not-so-clever people. He abandoned this approach when the skulls of “idiots and imbeciles” turned out sometimes to be larger and of better quality than those of people deemed highly intelligent.

His tests, commissioned by the French education ministry, were designed to identify children in normal classrooms who were struggling and might need special education. A series of short tasks and questions were used to identify a child’s mental age, which was compared to their actual age.

Binet had intended his test as a general indication of a child’s progress, rather than as some sort of irrefutable science.

However, his idea was taken up and used for different purposes. The idea of an exact intelligence quotient was invented, scored by dividing mental age by chronological age.

Psychologists proposed that intelligence was a precise, measurable attribute that could be measured accurately across all people and all cultures. This would support their claim that psychology – derided by many as a mixture of philosophy and wishful thinking – was an exact science, like physics.

Furthermore, in line with eugenics theory, they claimed this thing called intelligence was inherited, and not influenced by environment or education.

‘Moron’ mayor

IQ (intelligence quotient) testing was taken up enthusiastically in the US. Early versions had already produced some interesting results – in 1915 the mayor of Chicago tested as a “moron” (the newly invented term for a “feeble minded” person) on one version of the Binet scales.

In 1917, Harvard psychologist Robert M Yerkes decided that the world war, which involved the mass mobilisation of soldiers into the US army, presented an unmissable opportunity to demonstrate the IQ test’s scientific validity.

Drafted into the army as a colonel, he presided over the administration of mental tests to 1.75 million men, something he called a feat of “human engineering”. Tests were administered in written form for the literate and in pictorial form for those who could not read. They were timed and often taken simultaneously by large numbers of men under the supervision of an examiner in specially commissioned buildings.

The results came as something of a shock. According to the data, the average white American had a mental age of 13. This stood just marginally above the designated mental age for a moron, which was between eight and 12. Furthermore, the results suggested that 37% of white Americans and 89% of “negroes” fell within this category.

This all took some explaining. It confirmed many of the racial and class prejudices of Yerkes and his fellow psychologists, who were all hereditarians, believing that intelligence or a lack of it was inherited and lowest among non-whites and the poor of all races.

However, the sheer scale of it seemed to suggest the whole country was rapidly degenerating, with even the white race – God forbid – heading for mental oblivion.

Convoluted and racist explanations were produced. For example, many of the whites were recent immigrants from southern Europe, Jews or eastern Europeans of “lower stock” than western and northern Europeans. The “negro” results simply confirmed existing racist assumptions.

There were calls for curbs on immigration and admission of refugees to prevent the “moronisation” of the country. These calls resonated during the 1930s Jewish refugee crisis caused by Nazism, and persist today.

Debunked – but myths live on

In his brilliant book The Mismeasure of Man, Stephen Jay Gould dismantles and invalidates the whole Yerkes testing programme. The tests were deeply culturally biased, inefficiently administered, methodologically incompetent and had no scientific merit.

He describes the testing as “a shambles, if not a disgrace” (Gould, 1996: 231). No credence had been given to any possible educational or environmental factors. Educated northern black soldiers far outscored their southern counterparts, who had been allowed no education – this was quietly ignored. Recent European immigrants with poor English struggled to answer questions such as “Crisco is a: patent medicine/disinfectant/toothpaste/food product” – questions that were culturally and linguistically incomprehensible to them.

Yet the findings lodged in the American political and public consciousness, stoking fears about the feeble minded, race and foreignness.

To this day, we persist in the belief that we can precisely measure a thing we call intelligence. If you score 70 you have a learning disability – if you score 71 you do not. Psychologists continue to patrol the boundaries of human belonging, pronouncing who is in and who is out – thanks to the flawed legacy of men like Binet and Yerkes. n

Gould SJ (1996) The Mismeasure of Man. New York: Norton

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Married – but without the capacity to consent to sex?

Belinda Schwehr 

Belinda Schwehr

— Spring 2018

A man with Down’s syndrome and his wife were awarded damages after he was assessed as lacking the capacity to consent to sex and they were denied conjugal relations. Belinda Schwehr reports on the case and its implications.

A married man with Down’s Syndrome, CH, was awarded £10,000 after he and his wife, WH, were deprived of conjugal relations for more than a year because he allegedly lacked the capacity to consent.

WH was effectively warned by a local authority safeguarding team she could face legal action if she continued to initiate sex with him; the type of action was not set out in the legal report so may have been civil or criminal. Following a separate claim, she was also awarded an undisclosed sum.

The case, CH v A Metropolitan Council, followed an assessment triggered by
the couple’s seeking fertility treatment. For such treatment to be lawful, any medical professional must be satisfied the parties have consented to sex. A psychologist said that the man did not have the mental capacity to consent to sex and therefore, presumably, to the desired treatment.

That must have been distressing for the wife, but the psychologist recommended that a course of sex education ought to enable the man to acquire the capacity.

The concerns were formalised in early 2015, but the course began only in mid 2016. It was completed within the expected time; the man had to go back for further input on health-related issues but he eventually “passed”.

Solicitors then issued a human rights claim within the Court of Protection proceedings.

The judge (Hedley J) pointed out that article 8 of the Human Rights Act 1998 – the right to respect for one’s private and family life – was a qualified right that could be interfered with in certain circumstances, including when in accordance with the law and for the prevention of crime.

This meant that some of the “incursions on the conjugal relations of CH and WH” were justifiable. It was the delay in doing anything about it that led to the successful claim for a breach of human rights, compensated for in damages.

The judge noted that CH was psychologically and emotionally resilient and did not seem to have suffered long-term consequences.

However, it was accepted that the impact must have been profound at
the time, not only over the loss of sexual relations but also because he would
have been unable to understand why this was happening.

Furthermore, his wife, understandably and foreseeably, withdrew to another bedroom and withheld much physical affection.

Before the hearing, the local authority offered to make a formal apology to CH for the delay and agreed to pay him £10,000 in damages, his pre-action costs, plus £21,600 in costs from the previous Court of Protection proceedings. This offer was approved.

Assessment, care planning and commissioning points

The case report does not indicate whether the local authority was already providing services to CH. I have been assured that the problem was not that he was found ineligible or denied the funding for the course, but that the council simply
failed to organise it despite much correspondence and having accepted that it should.

Any council may have said to a person with this high degree of daily living skills that he was ineligible for a service, because there was only one area of his life in which he was “unable to achieve” (in this case, relationships).

If that had been the case for CH, this would have shown the relevance of the Care Act section 19 power as opposed to the duty to provide, given the overarching duty to promote wellbeing and the obvious intrusion generated by the council’s intervention.

Public expenditure, in a social care context, to be lawful at all, must come within the wording of the Care Act. Relationship support for people with impairments is well established, in the form of chaperoning and helping a person into a social life, as well as part of the facilitation of leisure activities and recreation, and the management of relationships.

The new law is less prescriptive than the old law, which is good for people who want to innovate. Under the Care Act, the word “facilities” in section 8 is clearly wide enough to cover a sex education course. It is legal to assess a person as being unable to manage a relationship, and for the impact of this to be significant enough to create a duty to meet need, via the cost of a course, as long as the course is educational and upskilling. If there is not enough impact to create a duty, councils have a power to act.

Even though local authorities are the decision makers on how to meet need, it is worth remembering that direct payments provide a mechanism for private commissioning of anything that councils are too embarrassed to commission or quality assure when they fear prurient interest or criticism from the tabloid press – so long as the service is legal.

Safeguarding points

The judge said:

“Society’s entirely proper concern to protect those who are particularly vulnerable may lead to surprising, perhaps even unforeseen consequences. Such, however, may be the price of protection for all … Many would think that no couple should have had to undergo this highly intrusive move upon their personal privacy, yet such a move was in its essentials entirely lawful and properly motivated. As I have said, perhaps it is part of the inevitable price that must be paid to have a regime of effective safeguarding.”

The safeguarding implications of this case are:

Despite the “presumption” of capacity, the local authority’s safeguarding responsibilities were properly regarded as triggered in relation to the married couple’s assumed intimacies.

Not even Making Safeguarding Personal (Local Government Association, 2017) could have been used to prevent the council from doing as it did, because the evidence about capacity was not contradicted, which gave the council a reasonable belief that the man was subject to abuse.

Safeguarding cannot work without a lower threshold than certainty being applicable to section 42 enquiries, given the parallel operation of the presumption of capacity.

However, as the KA case showed in our last issue (Schwehr, 2017) a competent medical expert can be overruled by a judge in a capacity decision. Whether one’s level of functioning refutes the presumption of capacity is ultimately a legal judgment. An expert opinion on capacity is not an absolute determinant.

Possible action by spouse

What about WH’s loss of conjugal relations in this case?

The report states that she pursued a claim under the Human Rights Act 1998, which was settled on confidential terms.

What else could CH’s wife have done, considering that nobody in this case suggested that the psychologist’s assessment was wrong?

It would have taken a brave and well-informed person to say the following, but she could in theory have written to the council as follows:

“If you believe my husband lacks capacity and you intend to tell other people about that in the context of safeguarding, you need to get it declared to be the case by a competent court because he is presumed to be capable and the psychologist is only expressing a view with which I do not happen to agree.

“I intend to go on offering him the opportunity to have sex with me unless or until you take proper procedural steps to clarify your position.

“If I am arrested by the police for a criminal offence, I will have a reasonable belief in my husband’s willing consent so I am not expecting to be charged or prosecuted.

“If you take steps in the court of protection to get an injunction against me, or change my loved one’s care plan so as to impact upon our private life, that is up to you, but you need to have taken on board my views about his capacity and best interests (because I am a statutory best interests consultee), in order to have any hope of success.”

This approach could be used, in adapted form, by any third party in a situation like this where a person is potentially unfairly regarded as a possible perpetrator of any type of abuse, particularly if the relationship is close.

Legal literacy in social care

Consider, however, if this had been an elderly woman with dementia in a care home, whose husband’s entrenched view was that she still knew him as her husband, and could consent to sex after 50 years of marriage – would the press coverage be critical of a “nanny” council?

The tabloid press might find the idea of women in care homes having a right to sex if they have capacity unseemly or inappropriate, especially if others deem the woman vulnerable. But the presumption of capacity applies to everyone, and the Care Quality Commission says care homes should be homely.

For this reason, a degree of legal literacy really matters for adult social health and care clients. The distinction between what constitutes a sexual crime or a civil assault, as opposed to conduct that carries risks but can be managed as an issue of maximising welfare, is part and parcel of person-centred care planning and provision.

Observance of human rights is a duty in all care homes, not just of social work staff in councils or clinical commissioning groups. n

Conclusions: consent and welfare concerns

Laying down any clear test for capacity in relation to sex is a multifaceted problem. It all depends on the facts.

It is hard to define consent on paper given the range of contexts and motives for people without cognitive impairment to willingly participate in a sexual activity – many of us might accede to deliberately abusive treatment through ignorance, openness to experimentation or simply hunger for attention, love or comfort.

There is social ambivalence about the range of sexual acts – from the ordinary straight or gay, through to the unusual, to the well out of the ordinary and into fetishism – if there is no apparent unwilling victim.

It is almost impossible to separate welfare concerns from the strict question of capacity in matters such as the differing possible consequences of sex for men and women, and the differing impact of sterilisation (usually irrevocable in women, potentially reversible in men).

The underlying purpose of criminal law is different from civil law, and prosecution and actions for civil assault have different standards of proof for public policy reasons.

Belinda Schwehr is chief executive of legal advice charity CASCAIDr (www.CASCAIDr.org.uk) and owner of the Care & Health Law consultancy. She has been a barrister, a solicitor advocate and a university law lecturer

References

CH v A Metropolitan Council [2017] EWCOP12

Local Government Association (2017) Making Safeguarding Personal. www.local.gov.uk/topics/social-care-health-and-integration/adult-social-care/making-safeguarding-personal

Schwehr B (2017) What is the law on capacity to have sex? Community Living. 31(2): 10-11

This article is the second of a two-part series. Part one highlighted the case of KA, a person with a rudimentary understanding of sex, who was presumed capable of consenting (Schwehr B, 2017)

 

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Dealing with death, bereavement and loss

Community Living 

Community Living

— Spring 2018

Everyone has the right to grieve for the loss of a loved one and well-meaning attempts to protect people from the realities of death are misplaced. Sue Pemberton reports

 

A regular topic of discussion for members of self-advocacy group REACT is how they feel when someone they knew or loved dies.

Others often try to protect them from the realities of dying and death. Although people mean well, these actions are misguided – everyone has the right to feel, grieve, talk about and remember their loved ones, as well as time to recover.

Taboo

Loss and bereavement are often a taboo subjects in English culture, but the REACT team, a group of self-advocates in Lancashire, along with volunteers from other learning disability organisations, held a conference recently to address this very subject.

Around 70 people attended, the majority of them with learning disabilities. Workshops and discussion groups allowed people to explore thoughts and feelings in a variety of areas around death and dying.

The opening speaker, a self-advocate from Blackpool, shared her very moving story about her partner’s death and how she had been unable to spend time with him as his last few days approached, as he shared a home with other people with learning disabilities and it was thought to be inappropriate that she stayed there.

She told this story so others would not be prevented from having loving relationships with people, particularly during the most difficult times like the end of life.

There were workshops on “Bereavement circles” (friends and family who come together to support the person through a period of loss), “Dealing with loss and talking about it” and “How to plan a funeral”.

These were jointly run by the self-advocates who were passionate about bringing information to others, and confirming that it was OK to talk about your loss and experiences.

Many people openly discussed how they felt when a loved one died, and shared very personal experiences they had not spoken about before.

Once given the forum and the opportunity to discuss these personal issues in a safe environment, people had the confidence to open up about thoughts and feelings they had kept quiet about. There were discussions about how “bottling up” feelings can affect mental health in a negative way.

Practicalities around death

A specialist will writer from a local firm of solicitors encouraged people to think about what they wanted to happen to their possessions and who they wanted to have them after they died.

Funerals were discussed, including who would be asked to arrange one, whether people would prefer a religious ceremony, if they wanted a burial or cremation, and whether to have flowers and singing.

A session with a funeral director, who was called away to deal with a bereavement and was replaced by his wife, discussed what happens at a funeral, and issues to think about. There was also the opportunity to hear from Cruse Bereavement Care.

A welcome discussion

People appreciated the opportunity to discuss this subject. When people die, those left behind need time and space to process things, to think, to get help, to talk and to feel supported, comforted and informed. Some deeply moving comments illustrated how powerful and empowering the day had been for people:

“I learnt it is ok to show my emotions.”

“I learnt about being able to go to my dad’s grave and having a memory box.”

“Thinking about mum and dad.”

A quote from someone who helped to organise the conference really sums up how a topic that can be upsetting or distressing can, if presented appropriately, lead to a very positive, engaging experience:

“What was surprising was that despite a really tough topic people went away feeling energised and excited about the work that can now be done with self-advocates, providers, families, supporters and other professionals to really improve people’s quality of life in relation to this topic.”

A spiritual close and the next steps

In a surprising and unplanned close to the conference, a local minister arrived, and the whole group joined together to close with a prayer. Fittingly, this ended the day on a spiritual tone.

So, what is the next move for the self-advocates? They intend to develop an action plan to take to the Lancashire Learning Disability Partnership Board. The topic will be on the agenda at the self-advocates’ conference in Blackpool, and providers are being encouraged to sign up to discuss death and dying, and what people want to happen to them at the end of their lives.

What can be quite a sombre subject has brought about changes in the way people think about dying, and many self-advocates have since shared the fact that it has prompted them to make a will. Fewer have organised a funeral plan, but awareness has been raised. n

l For more information about REACT www.caritascare.org.uk/for-people-with-disabilities/research-in-action-react/

Sue Pemberton is chief executive of Integrate (Preston & Chorley)ltd
www.integratepreston.org.uk

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TV – A sensitive portrayal of reality

Community Living 

Community Living

— Spring 2018

Tracey Harding enjoys a deftly written TV drama series that depicts life for those who are different in a small town and finds subtle comedy and nuance in human interaction

The A Word. BBC1, series 2, episodes 1-16, November/December 2017

Silent Witness. One Day. BBC 1, series 21, episode 7, January 2018

At the end of last year, television provided a Christmas treat that shone among the stodge of repeats and old films.

The A Word (BBC1) returned for a second series, proving that the first series was not merely a flash in the pan. Many felt that this series, unusually, surpassed the first.

The A Word is a drama set in the beautiful surroundings of the Lake District which follows the lives of the Hughes family, whose five-year-old son Joe has autism. While the first series focused on the family’s struggle to come to terms with Joe’s diagnosis and what it would mean for his future, in the second, the focus shifted to the ripple effect it had on the people around him.

The drama is written by BAFTA award winner Peter Bowker, a former teacher who worked with children with learning disabilities, and it gives an emotionally nuanced look at autism, being both quirky and beautifully acted. Max Vento again gave a quietly intense performance as Joe.

In this series we get more of a feeling of how Joe’s family and their reactions to him appear through his own eyes.

He is now attending a specialist school which requires a 100 mile round trip every day to Manchester, which places a huge strain on his parents’ marriage.

This is where the writing is at its best, highlighting issues that are a reality for many parents and carers with children with disabilities, and managing to refrain from being schmaltzy or preachy.

In this series a romance between Joe’s grandad Maurice (Christopher Ecclestone) and local music teacher Louise (Pooky Quesnal) provides a resonance to Joe’s story. Louise’s son Ralph (Leon Harrop), who has Down’s syndrome, attempts to prove to his mother that he is responsible enough to hold down a job and be treated like the adult he has become.

Harrop was excellent in the first series, and has proved himself even more of a talent in this one as he was given a strong storyline which he has developed and grown into.

Harrop’s character of Ralph captured how a small town deals with people who are different, and he provided much of the humour, particularly in the witty exchanges he has with Maurice. In a recent Radio Times interview, Christopher Ecclestone praised Harrop’s performance:

“Leon has the ability and technical nous and work ethic to carry a show. He has what people in the comedic work call funny bones. Leon technically understands comedy in a way I don’t,” he told the magazine.

In interviews about The A Word, Ecclestone has consistently championed the need for characters with learning disabilities to be included in all future writing and to encourage the visibility of people with all disabilities on screen. He has noted that the four main terrestrial TV channels are under political pressure to include storylines and set aside time for programmes so people special needs see themselves and their lives reflected in drama. “I think writers are desperate to do it,” he told the Radio Times.

Shining a light on care home abuse

A writer who is determined to reflect the lives of people with special needs and disabilities on television is Timothy Prager, whose long-running series Silent Witness featured a story, One Day, about suspected abuse in a care home.

Silent Witness is based on the work of police pathologists. Since 2013, it has featured the disabled actress and comedian Liz Carr, so the series is already ahead of the game in terms of recognition and inclusion of actors with disabilities.

In this episode, the script centred around a murder investigation which led Nikki (Emilia Fox) and Jack (David Caves) to a care home for people with learning disabilities.

Any drama that highlights the possibility of abuse in care homes needs to be handled sensitively, and these episodes certainly did this, although I felt that there were many parts of the story which for me didn’t ring true, particularly in the way that the police and care agencies were portrayed. However, remembering that this was a drama, it was encouraging to see so many actors with learning and physical difficulties giving emotionally complex performances.

Prager should be applauded for shining a light (albeit briefly), on the scandal of abuse and neglect in care homes. He insists that every script he now writes will include disability somewhere, and we can only hope that this baton is taken up by all writers of television drama. n

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Part of the community?

Community Living 

Community Living

— Spring 2018

Small homes allow people to develop true friendships and be part of wider society. However, recruitment issues in an age of austerity present a genuine danger we may recreate institutional ways, fears Peter Rainford

 

The pioneering work to get people out of large institutions and integrated into communities of the 1980s and 1990s was strongly values based, using the teaching of Wolf Wolfensberger (1973).

Such values and practice included respecting people’s privacy in their own homes, with staff not automatically having keys but instead knocking on the door and asking for permission to come in. This may seem a small matter but, as someone who has lived in a supported group home during a period of ill health, I can attest that having staff entering without knocking is a powerful daily reminder of your disempowerment.

When I worked at provider organisation Integrate, spare keys were held at the office for emergency use only. If staff are given keys to people’s homes, the risk is they will use them routinely.

People were also supported to have a community presence through engagement with local activities and groups, even if this meant some community development work to establish a new local resource. Local people came along to a “sewing circle” set up by an Integrate staff member in a Preston community centre, including Ms A, a keen sewer who soon became an accepted and valued member of the group.

When Ms A was accompanied by a different staff member, this employee reported back to the director that the sewing circle was very cliquey. “Oh dear, was Ms A excluded?” the director asked. “No, she is very well in with them all – I was the one excluded.” That remark still makes me smile because it is such a powerful indicator of successful integration.

‘Your lot’: size and integration

While one or two people with learning disabilities can easily become accepted and welcomed members of an existing activity group, larger numbers will almost always be viewed as a group – often negatively so – and excluded. This may even happen where a person is already part of a group.

When a local learning disability team took a group to an old time dancing club which had two long-term members with learning disabilities, these two members were almost immediately told: “Your lot are over there.”

So we know that numbers are important to integration. Austerity cuts, combined with a recent ruling on sleep-in payments, means we are sadly seeing bigger schemes, or lots of people grouped in blocks of single flats with one on-call night employee. This is incredibly short-sighted as it absolutely mitigates against integration.

We need creative solutions, such as organisations renting a one-bed flat close to several homes as a sleepover place and staff base. At Integrate, this model was built into early developments, allowing safe, gradual withdrawal of sleepovers, which increased independence and reduced costs.

We all take it for granted that we have people in our lives who are not paid to be with us but, for many people with learning disabilities, this is not the case.

Helping people develop a strong friendship circle is one of the biggest challenges facing services, and it seems to me that some simply give up or do not start in the first place.

A good way to begin is with volunteers with shared interests. At Integrate, a volunteer called for a fellow football fan on his way to watch Preston North End play every home game and, gradually, a friendship developed. Friendship groups and a real community presence are better protection from poor standards of care, disrespect and abuse than any inspection system – abuse thrives on isolation.

The loss of people who hold these values and their replacement by staff with little time or knowledge, along with austerity and the use of often distant assessment and treatment centres, have combined to create a situation where indifference prevails and where the old institutions are being recreated. We can counter this only by speaking out and supporting others who do so, as with the #JusticeforLB campaign.

The recruitment of good staff with the right values and respect for the people they work with is by far the biggest protection against poor services. Whatever the difficulties, we must stand firm on recruitment standards.

One person who inspired me with his work and values was the late activist and academic David Brandon. He once suggested a test for staff quality – “How many of these people would you allow near someone you love?” Apply the Brandon test and, if you cannot answer “yes”, do not recruit the person. n

Peter Rainford is digital inclusion officer at Disability Equality North West and a wellbeing, recovery and mental health activist. He worked in social core for 30 years, including at Integrate (www.integratepreston.org.uk) and Imagine (www.imagineindependence.org.uk)
t @peterjrainford

References

Wolfensberger W (1973) The Origins and Nature of our Institutional Models. Human Policy Press, New York

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Whose world is it anyway?

Community Living 

Community Living

— Spring 2018

Where a system of ‘care’ often turns into one of ‘control’, does inclusion mean people should fit in with the world or that the world should fit around them? asks Simon Duffy

 

Studying political philosophy at university, I learned about the powerful ideals that have driven people over the centuries to change the world.

Socialists want to live in a world without exploitation, fascists want power and glory, and liberals want freedom while conservatives want things to stay the same. While each backs up their ideals with arguments, they believe that their particular vision is obviously attractive. See it and you’ll believe it.

When I began working with people with learning difficulties, I discovered a world divided by conflicting ideals – but rather different ideals. Some people believed in a world of “care”, where some people took care of other people, often by placing them in strange, institutional worlds. Others, like Wolf Wolfensberger, argued that people with disabilities should not be shut off inside institutions; but instead should join the real world, the mainstream world (Wolfensberger, 1975).

Danger in being ‘too special’

Wolfensberger showed that the world of “care” – which can sound nice in theory – was very dangerous in practice. People who are treated as special, and are then placed in special places, quickly become far too special. Situations deteriorate, people are forgotten, treated as a burden, neglected, abused or worse. Institutions are dangerous places. They don’t need more regulation – they need closing down.

For these reasons, many people worked hard to help people leave institutions following Wolfensberger’s guidance.

However, these ideals sometimes appeared to take people to some very strange places. They even sometimes seemed to justify extreme bossiness: don’t gather in groups, don’t wear the wrong clothes, behave in the right way.

The motives for all this bossiness were often very idealistic, but often it didn’t feel right to me. Should I change myself to fit the world or should the
world change to fit me? Who wants to fit in anyway?

Certainly, my friends in punk band Pertti Kurikan Nimipäivät – also known as PKN – whose four members have learning disabilities, don’t want to fit into mainstream Finnish society, as lovely as that is. They want to stir things up,
live life their own way and help start a revolution.

They have been at the forefront of a movement in Finland telling people that people with disabilities are “Not for Sale”, for example. This is challenging a social care system that uses competitive tendering, which they argue means people with disabilities who need help and support do not have choice and control over their own lives. They are sick of people bossing them around
and selling them off like slaves to the lowest bidder.

Although Wolfensberger has much to teach us still, I found true inspiration from the thoughts of John O’Brien, academic and fellow of the Centre
for Welfare reform. His vision of society – a world of human rights, of freedom
and of inclusion – makes my heart sing in a way that is missing from both the frightful world of “care” and from the technology of “normalisation” created
by Wolfensberger.

Inclusion is a more rewarding vision of society, partly because it respects the need we all have to find our own path and our own role in a society that welcomes us for who are.

In my own work, I’ve tried to build a bridge between the ideal of inclusion and the traditional world of political philosophy.

Jeremy Waldron, who was one of my teachers, wrote: “Above all, I think the idea of citizenship should remain at the centre of modern political debates about social and economic arrangements. The concept of a citizen is that of a person who can hold their head high and participate fully and with dignity in the life of their society.”

This seems to me a very helpful beginning. Instead of trying to fit people into society, we should make a society where everyone fits, where everyone can flourish and live with dignity.

This is an inspiring vision not just for people with disabilities and their allies but also for refugees, people in poverty, those facing discrimination – in fact all of us.

This is why many of us have come together to form Citizen Network. This
is a global community for all who believe in equal citizenship and inclusion for
all – all those who want to look beyond appearances and ensure everyone
is valued.  www.citizen-network.org

Simon Duffy is director of the Centre for Welfare Reform and secretary to the international cooperative the Citizen Network

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Endless victims of violence?

Community Living 

Community Living

— Spring 2018

Newspaper coverage about people with learning disabilities often focuses on attacks and abuse. While it is important to highlight this issue, stories of success and everyday lives are needed to prevent a perception of helplessness and dependency, says Shirley Durell

A growing body of research exists in the areas of disability and media. However, few studies have focused on newspaper coverage about learning disabilities or have involved these people in their enquiries (Wertheimer, 1987; Disability News Service, 2010; Haller, 2011).

With all of this in mind, I carried out a PhD study on modern-day representations of people with learning disabilities by national print newspapers. I wanted to find out what the UK national press was saying about people with learning disabilities and, most importantly, what people with learning disabilities thought about these news items.

The work involved a research advisory group and two focus groups of people with learning disabilities and their supporters, and an analysis of 546 learning disability stories (Durell, 2013).

In terms of the UK national press, I chose the three dailies with the highest circulation figures for each of the main types of newspaper for the years 2006–10: The Sun, the Daily Mail and the Daily Telegraph (Quarmby, 2011). A search on the Lexis database with the terms “learning disability”, “learning difficulty” and “learning disabled” revealed 546 stories (Table 1). I was mostly interested in items about adults with learning disabilities but I also included some pieces that talked about children.

By analysing content, I examined different features of these stories to find out more about what they had been saying about people with learning disabilities. This included identifying the most prominent media stereotype (if any) of disabled people that had been portrayed overall within each story, such as the portrayal of a disabled person as sinister and evil (Barnes, 1992). The overall themes that were discussed across each storyline were also explored and grouped under general headings.

 

Table 1. Number of news stories by year, per newspaper
2006 2007 2008 2009 2010 Total
The Daily Mail 54 43 38 46 28 209
The Daily Telegraph 24 37 24 24 37 146
The Sun 26 32 30 52 51 191
Total 104 112 92 122 116 546

Victim-related storylines

Interestingly, I discovered that, out of the 546 stories, 221 (40%) presented people with learning disabilities as an object of violence. These included items about them as victims of a wide range of criminal acts such as theft, assault and murder.

Others reported on incidents in which people with learning disabilities had been objects of violence within their own homes or within a care setting. This representation was also identified in some of the reporting of the story about Susan Boyle, a singer and winner of Britain’s Got Talent, who has learning difficulties.

Additionally, I found that the most recurring theme of this study’s items involved some form of victim-related storyline.

When this information was presented to focus group members, generally they were surprised to learn that so many stories talked about people with learning disabilities as objects of violence. One person at the first meeting had expected more stereotypical representations of people with learning disabilities as pitiable and pathetic. Another group member attributed the high proportion of object of violence items to the fact that “there has been a lot of disability hate crime stories, and also because of people’s attitudes towards people with learning disabilities”.

Indeed, the stereotypical representation of the disabled person as an object of violence is regularly featured by the media, as in real life many disabled people are often subject to victimisation.

On the one hand, these portrayals have been accredited as contributing to and underpinning the flawed impression of disabled people as completely helpless and dependent, along with the perpetuation of such victimisation (Barnes, 1992). On the other, the predominant coverage of the person with learning disabilities as an object of violence by a national newspaper can draw attention to the significance of these events, because disability hate crime can be ignored no longer (Quarmby, 2011).

However, while it is important “to talk about victims”, these narratives can create the impression “that disabled people are only ever victims” (Mencap Cymru, 2012).

So the UK’s national newsprint medium must report on the everyday lives of people with learning disabilities, because the absence of portrayals of a diversity of roles for disabled people across the media can reinforce the belief that they are incapable of looking after themselves and are therefore prone to violence. As a focus group member asserted:

“People to see me ‘as a person’ not my learning disability … but is that newsworthy? Think it is: what life is like for people with a learning disability … that should be in the papers.” n

Blame game: the effect of negative reporting

Press coverage of disability in the UK has become increasingly politicised, with an increase in the use of derogatory language to describe disabled people.

These changes have played a role in reinforcing the idea of disabled incapacity benefit claimants as undeserving.

Disabled people have stressed the impact of this reporting on their lives (Strathclyde Centre for Disability Research and Glasgow Media Unit, 2011).

The connection between “disablist imagery, the media and discrimination” (Barnes, 1992) has been highlighted by disabled people and their organisations since at least the 1960s.

Modern media representations of people with disabilities have been criticised as “frequently … limited to the sentimental, pathological and sensational, or … disabled individuals are simply not represented at all” (Anderson, 2011).

However, people with learning impairments and their supporters have only just started to be concerned about these matters.

References

Anderson J (2011) Public bodies: disability on display. In: Tefler B, Shepley E, Reeves C, eds. Re-framing Disability: Portraits from the Royal College of Physicians. London: Royal College of Physicians: 15-34

Barnes C (1992) Disabling Imagery and the Media: an Exploration of the Principles for Media Representations of Disabled People. Halifax: the British Council of Organisations of Disabled People and Ryburn Publishing: 2. http://disability-studies.leeds.ac.uk/files/library/Barnes-disabling-imagery.pdf

Disability News Service (2010) Disabled Protesters March on Ofcom over Offensive “Hate” Language. www.disabilitynewsservice.com/disabled-protesters-march-on-ofcom-over-offensive-hate-language

Durell S (2013) Advancing Inclusive Research Practices and Media Discourses: Representations of Learning Disabled Adults by the Contemporary, Print Version of English National Newspapers. Unpublished PhD thesis. Coventry: Coventry University

Haller B (2011) Media & Disability Bibliography Project (1930 to Present). http://
media-disability-bibliography.blogspot.co.uk

Mencap Cymru (2012) Does He Take Sugar? Disability media seminar held in Pierhead, Cardiff Bay

Quarmby K (2011) Scapegoat: Why We Are Failing Disabled People. London: Portobello Books

Strathclyde Centre for Disability Research and Glasgow Media Unit (2011) Bad News for Disabled People: How the Newspapers are Reporting Disability. Glasgow: University of Glasgow. www.gla.ac.uk/media/media_214917_en.pdf

Wertheimer A (1987) According to the Papers: Press Reporting on People with Learning Difficulties. London: Campaign for the Mentally Handicapped

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Hear our voices: strong, loud and clear

Community Living 

Community Living

— Spring 2018

Politics has a huge effect on people with learning disabilities. Sara Pickard became deeply involved, which led to her involvement with the growing international self-advocacy movement

I am 34, have Down’s Syndrome and have worked for Mencap Cymru for over 10 years now. In that time, I have worked on a range of projects with people of all ages who have learning disabilities.

For the first of those projects – Partners in Politics – I visited schools and colleges throughout Wales to encourage those with learning disabilities to be more aware of the difference politics can make to their lives, and to encourage them vote.

I thought I ought to “practise what I preached” so I stood for election as an independent community councillor for my local area. I cannot believe that not only was I elected but also I am now in my third term of office, and still enjoy that responsibility.

I have always enjoyed speaking up about the things that are important to me and, in recent years, have had more opportunities to become involved with organisations as a self-advocate.

In particular, my role as the self-advocate council member for Europe for Inclusion International over the past few years has allowed me to meet and work with others who feel the same as me in many different countries.

Self-advocacy involves speaking up for yourself and speaking up for others, and there is now a growing network of groups right across the world who want to spread this vital message. This was clearly demonstrated at the Inclusion Europe Hear our Voices: Strong, Loud and Clear conference in Brussels at the end of last year.

Inclusion International council members were among the 70 delegates from 20 countries. Along with over 200 people with disabilities, we attended the fourth European Parliament of Persons with Disabilities in the parliament building. It was inspiring to see self-advocates from across Europe speaking on such a big stage. Two of the key messages coming from Brussels were:

  • We don’t need help – we need support
  • We must make sure that our voices are being heard stronger, louder and clearer.

Inclusion International has launched a major project called Empower Us, a global self-advocacy resource led by self-advocates, families, supporters and their organisations. A worldwide Empower Us action team will spread the global message and respond to calls for help on self-advocacy.

From 30 May to 1 June this year, Empower Us will be involved in a World Summit at the 17th World Congress of Inclusion International in the UK in Birmingham, which has as its theme “Learn, Inspire, Lead”. The congress will be the largest gathering of self-advocates, families, friends and supporters in the world.

If you have an interest in this work – in whatever capacity – why not join us and add your voice, share your experience, and be part of a movement for change?

Hope to see you there!

On International Women’s Day, Sara Pickard was named as one of the 100 most inspirational women in Wales by Wales Online.

Inclusion International: http://inclusion-international.org

World Congress of Inclusion International: www.worldcongress2018.com/

For information about Empower Us and becoming involved with the action team: http://selfadvocacyportal.com/

t @_EmpowerUs

http://tinyurl.com/yd2cx3wh

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Research – Fathers with learning disabilities

Community Living 

Community Living

— Spring 2018

Fathers with learning disabilities: experiences of fatherhood and of adult social care services

Daryl Dugdale and Jon Symonds, from the Norah Fry Centre for Disability Studies at the University of Bristol, talked to fathers with learning disabilities about their experiences of social care services and found they were often sidelined, with more attention paid to mothers

Background

We now know a considerable amount about what it is like to be a parent with learning disabilities, but most research focuses on mothers. Much less is known about the views and experiences of fathers with a learning disability and the challenges they experience.

This research carried out in 2016 set out to fill this gap in knowledge.

Findings

The men spoke about painful experiences in their childhoods, whether through school or difficult situations with their own families. One man told us his father felt he would not amount to anything because of his learning disability.

Becoming a father is an important event in any man’s life but, for some of the men we spoke to, this seemed to have added significance because it was a chance to prove other people wrong about what they were capable of.

Caring for young children is stressful and we heard about coping with having to get up at night, or negotiate with a partner about who would do which tasks.

Some of these challenges were compounded by the experience of learning disability. One father spoke of being a lone parent for his (now adult) children but not being able to read the letters from school. Another described feeling excluded from life at his children’s school because he was not included in the invitations to the parents’ evenings.

For four of the eight fathers, the experience of stress was so great they sought support for their mental health through formal health services. Interestingly, the support they received for this was from general health services.

When they discussed support for parenting, they were more likely to tell us that they felt left out by children’s services which focused their visits on the mother. This is in line with research on supporting families more widely, but the impact on the fathers seemed to be more pronounced in terms of their mental health.

This focus on the mother was reflected in our conversations with practitioners; it was rare for them to have worked directly with fathers in the learning disability field.

As one practitioner put it, when work was being conducted with parents who had learning disabilities, fathers seemed to be “sort of there, sort of in the background”, with them playing a secondary role in the child’s life.

There was general agreement among practitioners that parenting work was primarily focused on mothers and, when fathers were involved with services, the focus of the work was on other aspects of their lives.

The two extended pieces of work we heard about were from mental health practitioners. Their work focused on the men’s mental health in different ways, but each led to a more nuanced piece of work about men’s roles as fathers in their families.

We believe that the relationship between men’s mental health and their identities as fathers needs more investigation, particularly in light of services tending to focus on one and not the other.

The implications of this echo existing knowledge about parenting with learning disabilities more generally, which are included in Reaching Out: Think Family (Cabinet Office, 2007). As this guidance recognises, families’ needs do not always fit neatly into specialist services. Closer working between adults’ and children’s services is one way to improve this.

Although supporting parents with learning disabilities is recommended in the guidance, the findings from this study highlight the need to find systematic ways of providing support to fathers in this support as well as mothers.

Key messages

  • l Fathers with learning disabilities can be strongly motivated to care for their children.
  • They may experience stressful challenges from parenting, but receive less support than mothers.
  • Practitioners can engage fathers with their feelings about parenthood, how they cope with the tasks of parenthood, and manage their strategies for coping with stress.

Conclusion

It is already established that the stress of parenting is associated with poor mental health for parents with learning disabilities.

There is also substantial evidence that child welfare services tend to focus on the needs and activities of mothers and engage less effectively with fathers.

This study contributes to our understanding of how these services are experienced by fathers with learning disabilities who may experience similar stresses, but be less likely to receive preventive support.

Find information about the Working Together with Parents Network here: http://www.bristol.ac.uk/sps/wtpn/

References

Cabinet Office (2007) Reaching Out: think family. London: the Stationery Office

Fathers with learning disabilities and their experiences of adult social care services

Aims To explore the experiences of fathers with learning disabilities about being a father and of their experiences with adult social care services.

Methods We worked with a group of four fathers whom we consulted about the study. We distributed information about the research through the Working Together with Parents Network and the Elfrida Society. We interviewed eight fathers who identified as having experience of learning disability services and lived in England. We also interviewed nine practitioners from adult learning disability services that had links to the fathers in other parts of the country.

Summary In 2016, the good practice guidelines for working with parents with a learning disability were updated. The issues experienced by fathers with learning disabilities and how practitioners can respond are explored.

Read the report

Dugdale D, Symonds J (2017) Fathers with Learning Disabilities and their Experiences of Adult Social Care Services. School for Social Care Research, School for Policy Studies, University of Bristol. www.sscr.nihr.ac.uk/fathers-with-learning-disabilities-left-out-of-support-study-finds/

The research was funded by the School for Social Care Research, part of the National Institute for Health Resear

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Stomp on the chemical cosh

Community Living 

Community Living

— Spring 2018

Thousands of people with learning disabilities are taking psychotropic drugs they do not need. Seán Kelly talks to Anne Webster and Carl Shaw, who lead STOMP, a welcome NHS England initiative to tackle the curse of overmedication

Approximately 35,000 people with learning disabilities, autism or both take unnecessary psychotropic medicines every day, according to a 2015 report from Public Health England.

Psychotropic medicine is usually used to treat psychosis, depression, anxiety and sleep disorders. It also includes epilepsy medication when this is used only for its calming effect rather than to treat epilepsy. However, in the cases that PHE looked at, there was no diagnosis or medical justification. The medication was simply being used to control behaviour.

As Anne Webster and Carl Shaw from STOMP tell me, 35,000 people is enough to fill a large football ground. It is a shocking figure so I am pleased to meet up with them to hear more about this NHS England initiative to create awareness and tackle the problem. STOMP stands for Stop Over-Medicating People. “It’s a great name,” I say, “You have got my support already.”

Webster trained as a learning disability nurse and previously worked with the Improving Lives team, who carried out reviews of everyone who had been an inpatient at Winterbourne View.

Shaw, a man with learning disabilities, used to work for care provider Dimensions as a quality auditor.

Together they lead the STOMP project, which is halfway into a three-year span.

Many people must have suspected that overmedication goes on but the PHE report put a reliable figure on it for the first time. After the report’s publication, NHS England promised a swift response, which led to STOMP being set up.

Webster and Shaw lead a small team of staff, which includes three part-time pharmacists and a project coordinator. A family carer advises.

STOMP has a project plan with clear goals for each of the three years – its first annual report was recently published (STOMP, 2017).

Why is overmedication happening?

Psychotropic medication can be a response to difficult situations such as self-harm, harm to others or displays of behaviour seen as challenging.

Webster says that is it understandable that carers sometimes go to a GP “feeling desperate and looking for help”. GPs in turn can “feel they are put on the spot, and may prescribe this kind of medication to help a stressed carer manage”. The practice becomes ingrained when people get repeat prescriptions and do not have regular medication checks. The person’s sedated state can start to seem normal
to others.

Shaw tells me about when, as quality auditor, he visited a service and met two people who used wheelchairs and did not communicate with words. When he turned up at 8am, the two people were already up and dressed, alert and ready. He then noticed that, for the rest of the day, they seemed very tired.

When he asked why, he was told that it was just because they had profound learning disabilities. However, he was not satisfied with this answer and asked about their medication. Shaw wrote a report and fed back to the staff and manager who then started to look at their prescriptions.

Webster and Shaw sometimes find people think the issue is simple to address. Some think that all you have to do to solve the problem of overmedication is to speak to doctors. STOMP’s approach is to reach out to all the different professions, social care providers and families. It is a “whole system” issue. They strongly believe that awareness is needed right across the system.

They have heard professionals saying “but if we take them off medication we’ll have to find more for them to do”.

Shocking as this attitude is, Webster and Shaw are keen to avoid simply blaming people and to find ways to develop better awareness. Their approach is that everyone has a responsibility to challenge overmedication.

Regular medication reviews are essential to ensure that anything taken is really needed. Webster also points out the importance of finding out what is going on for the person – are they bored, frustrated or even in pain? These things can lead to the kind of behaviour that is “treated” with medication.

One strand of work has been the STOMP pledge. In 2016, the Royal Colleges of Nursing, Psychiatry and General Practitioners joined forces
with the Royal Pharmaceutical Society,
the British Psychological Society, NHS England and the health minister to sign
up to take real and measurable steps against overmedication.

STOMP then developed a social care pledge, which 150 social care organisations supporting more than 50,000 people with learning disabilities, autism or both signed up to, promising to take practical steps to reduce unnecessary psychotropic medication. These organisations report regularly to STOMP about their progress. A new healthcare provider pledge will be launched in April this year.

STOMP’s first report features the story of 16-year-old Josh Wills, who has learning disabilities and autism. He was in an assessment and treatment unit for three years, and was featured on national news when he was discharged with a tailored package of education, health and care near his parents’ home in 2015, his medication greatly reduced.

His father says: “Josh used to be prescribed a number of antipsychotic and sedative-type medications when he was in hospital and far away from home. He has now come off virtually all these drugs. I have seen Josh improve physically and emotionally. He seems more alert and, in my opinion, his long-term memory of people and places has improved greatly.”

Alternatives

Webster is quick to point out that it would be wrong to condemn all psychotropic medication as bad. It can be dangerous for people to just stop taking their medication in an unplanned way. The process needs to be managed carefully by a GP.

Some people may always need some medication, but it should be the right kind and the right amount for the shortest period of time necessary.

The STOMP campaign argues for much more consideration to be given to alternatives to medication such as positive behaviour support, which looks at the motives behind a person’s behaviour. A dedicated STOMP page on the Voluntary Organisations Disability Group website (VODG, 2017) gives links to alternatives to medication as well as advice for families and carers. There are also toolkits for GPs and social care providers to assess progress and build action plans.

The Care Quality Commission has signed up to the pledge and is training all inspection staff, while the Challenging Behaviour Foundation is working with STOMP to produce a pathway document, to help people identify the steps they can take to reduce overmedication. STOMP has also commissioned inclusive theatre group MiXiT to create a performance piece about overmedication, which received a standing ovation at the Royal College of Psychiatry conference in Dublin.

The STOMP project is due to run for only three years so already attention is being paid to what will happen once it is finished. Steps have been taken to embed the work into other NHS programmes, including the current review of mortality of people with learning disabilities. As Ms Webster points out, too much psychotropic medication over a long time can lead to weight gain, organ failure and premature death, so STOMP’s connection to the mortality review is important.

Thanks to STOMP, care, education and treatment reviews for children and young people, and care and treatment reviews for adults now include a “key line of enquiry” about medication. Annual health checks now include questions around overmedication.

Research

The project has developed a research group via Public Health England to provide detailed data on the amounts of medication people are taking, which will show whether the use of drugs such as antidepressants and antipsychotic drugs is increasing or decreasing. This will give STOMP direct feedback on the impact of its work.

One concern is that some GPs may be dismissive of requests for medication reviews. Webster and Shaw suggest reminding them that the Royal College of GPs is a STOMP pledge signatory. Support from learning disability teams should be available if needed in such situations.

My final question was what message did STOMP team have for readers of Community Living. Webster says: “One of the biggest messages is about regular reviews and checks. Why is this person on this medication? Is it having the right impact for them? Is it improving the quality of their life?”

Shaw suggests that if any of our readers have any stories that can be told, or want to find out more, then they should get in touch. Webster and Shaw can be contacted via Twitter.

Finally, the last word should go to an activist. Jenny Carter is a remarkable woman with learning disabilities and autism and one of the founders of Together All Are Able, a community interest company that focuses on
self-advocacy.

She says: “STOMP is important as we have got to make sure that people aren’t overmedicated. If they are, this can cause physical health problems and it can stop people being discharged from hospital. It can also stop people being able to take part in decisions about their life. It’s a huge issue.” n

Contact Anne Webster and Carl Shaw: t @AWebster67

References and resources

Public Health England (2015) Prescribing of psychotropic medication for people with learning disabilities and autism. http://tinyurl.com/y7g5t9c9 (includes “easy read” version

STOMP (2017) Stopping over medication of people with a learning disability, autism or both (STOMP). Annual Report. www.england.nhs.uk/learning-disabilities/improving-health/stomp

Voluntary Organisations Disability Group. STOMP. 2017. Resources including alternatives to medication and GP and provider toolkits: www.vodg.org.uk/campaigns/stompcampaign

Seán Kelly was chief executive of the Elfrida Society from 2001 to 2012 and is now a freelance writer and photographer

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Appearing on stage and screen

Community Living 

Community Living

— Spring 2018

(Nicky Priest as the Mad Hatter)

Mainstream theatre and TV have improved how they include people with different ethnic backgrounds and physical abilities. Richard Hayhow examines how well they are portraying – and changing perceptions of – people with learning disabilities.

Significant progress in the visibility of people with learning disabilities on TV and in theatre productions has been made across the country in recent years.

From the ground-breaking work in No Offence two years ago on Channel 4 to regular appearances in some of our favourite soaps and, indeed, in recent episodes of Silent Witness (see TV review, page 29), people with learning disabilities have had roles that have helped to break down preconceived notions of who they are and what they are capable of doing.

There are many ways to view this progress and versions of success and failure that could be drawn on to help tease out the answer to the questions of where we are as a society in our overall perception of who people with learning disabilities are, the role they can play and what contribution they can make in cultural provision.

Several significant markers reveal some current perceptions for me.

First, we have over the past five years seen a massive growth in “relaxed” performances in theatres and other venues nationwide. This has followed on the back of, for example, signed and audio-described performances and reflects a genuine desire to make performances accessible to people on the autistic spectrum and with learning disabilities.

However, this is only the first step. Unlike signed and audio-described performances, which are designed to enable sensory-impaired people to sit alongside non-disabled audience members, relaxed performances are for members of one section of society sitting alongside each other.

While being a great experience for everyone involved, including often the cast, the audience is essentially not integrated – others are not invited or do not want to take part.

Many of the rules of theatre-going are broken by a relaxed audience – standing up in the middle of show, making loud noises, wandering in and out – and other theatre-goers with differing expectations would find it difficult to be part of an audience of this kind.

Second, Open Theatre Company is working with a prominent theatre on a production of a family show featuring five professional performers with a learning disability, to be staged as part of a season of work showcased at that venue.

Without doubt, this is a truly collaborative and creative partnership project, with shared values about what we all want to achieve for the performers, and the changes needed to promote more inclusive theatre practice in mainstream settings.

However, the venue’s website says very clearly under its “Important stuff” section that the partners are working together “to support emerging performers with learning disabilities, some of whom appear in this production”. While this may seem an innocuous statement of fact, it can also be read as a warning about what people will encounter if they come and see the show.

Third, over the past three years, Ramps on the Moon, a collaborative initiative involving six theatres, has made significant strides in positioning the work of disabled artistes within mainstream theatre.

Ramps on the Moon aims “to achieve a step change in employment and artistic opportunities for disabled performers and creative teams, and a cultural change in the participating organisations to enable accessibility to become a central part of their thinking and aesthetics”.

While this programme has supported the inclusion of many performers with physical disabilities in mainstream productions, it has had little success with the inclusion of artistes with learning disabilities.

At the heart of this problem is the need to enable the different and often unique creativity of people with learning disabilities to steer the connection between accessibility and aesthetics more effectively; this is needed to radically challenge preconceived notions of the way we make theatre and the kind of theatre we make.

Ramps on the Moon in many ways seeks to include disabled performers within an existing canon of work and within conventions of performance (large stages/scripted plays) which may, ultimately, be inaccessible for many performers with learning disabilities.

Finally, we have seen a growth in the representation of people with learning disabilities on TV – but a closer analysis shows this is mainly people with Down’s syndrome. From No Offence (about a serial killer who targets young women with Down’s syndrome), to Call The Midwife and within our soaps, the prominence of Down’s syndrome is undeniable.

Why is this? Down’s syndrome is easy to recognise and to categorise. In many ways, it is the presentable face of learning disability, and other people with other kinds of conditions are excluded.

Seeing themselves

How does this context affect the performers with learning disabilities we work with? How do they see themselves in the work they do and how do they think others see them?

Nicky Priest, a stand-up comedian and actor, who recently performed in Seven Acts of Mercy at the Royal Shakespeare Theatre, says:

“I want to be a famous TV actor more than anything and it’s really important for me to be able to earn a living doing this kind of work. Performing has been something that has become a big part of my life, and has been something that has helped me through my life.

“As I have Asperger’s syndrome, drama was something that had always helped me come out of my shell and be more sociable with people. I’m convinced that people see me in a much more positive way because of seeing me as an actor.”

Vicki Taylor, a Birmingham-based spoken word artist, performer and activist, is less concerned about being famous but says:

“I want to be an actor because I love performing and I like exploring new concepts and new characters and it helps me to process life events and situations that I may otherwise struggle with.

“I also want to be an actor so that people can see me in a different way – as someone who is capable of acting and inspiring to audience members. If people knew me as a reputable actor who is well known, then I think they would think more positively about who I am and my abilities and potential.

“I think most people see me for my disabilities and what I struggle with, rather than what I can do.”

Rishard Beckett, who appeared in No Offence, has continued to pursue his acting career in a variety of ways. He has teamed up with another professional performer (without learning disabilities); they are in the middle of creating their second semi- improvised performance piece together.

Beckett is not just part of the professional team of actors involved in Open Theatre Company’s current production – he is also the visible, recognisable face of Coventry’s recent successful bid to become City of Culture 2021.

Yet he says – and has been saying since the age of 12 – that his ultimate goal is to appear in EastEnders, to the extent of knowing which family in that soap he wants to be part of.

He acknowledges the growth in his confidence in recent years resulted from his acting work. When asked what he does, he unflinchingly says: “I am an actor.” He understands now that other actors can learn from the way he acts and that all the varied work he is doing is part of his journey to reach his goal.

Common threads in success

Where does this leave us? Many individual responses fly in the face of my more cynical and critical analysis of the state of play. The common threads that run through the success stories of these three people are:

A willingness to diversify their practice to include a variety of ways of engaging in and creating performance work. The ultimate goal may be fame and TV appearances, but diversification brings changes to perceptions, and growth in skill, ability and confidence.

Support provided by a variety of agencies and individuals to nurture the development of performers in ways that are appropriate to their skills and abilities – including Open Theatre Company’s work as a creative enabler.

The willingness to explore new ways of theatre-making that begin to revolutionise our understanding of performance work.

The ultimate goal of being famous or appearing on TV is achievable by a minority of the many young people I work with. This does not mean, however, that all the others are not skilled, creative or able to contribute to the cultural life of our country – but we have to discover, support and nurture new ways of doing this.

This shift in thinking is the same shift that is needed to accept the differences at the heart of learning disabilities so it would feel comfortable to sit next to someone who is bouncing up and down on their chair and shouting loudly at the next performance we visit. Or where the fact that a show has performers with learning disabilities in it is a marketing tool to bring in audiences with high expectations of the quality of work they will enjoy, rather than a warning that may put them off coming.

Open Theatre Company:Facebook https://facebook.com/opentheatrecomp/

t @Open_Theatre_Co

Richard Hayhow is director of Midlands-based Open Theatre Company, which supports the professional careers of young people with learning disabilities to make them employable in the industry

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Stars of the silver screen strike gold

Community Living 

Community Living

— Spring 2018

Oska Bright – the world’s biggest learning disabilities film festival – broke records as well as boundaries, attracting more people than ever. Lisa Wolfe of arts body Carousel reports

Oska Bright, the world’s first and biggest showcase for film makers with learning disabilities, attracted record audiences to its eighth biennial at the end of 2017 in Hove, Sussex, with thousands more following the event through social media.

The festival is managed, programmed and delivered by a learning-disabled team, with the support of arts organisation Carousel and community film company Junk TV. This time, two from the team stepped up: Becky Bruzas became festival director and Matthew Hellett became head programmer.

Festivals need to be fresh and surprising, even if they are established and people know what to expect. The Oska Bright Film Festival has championed learning disabled film-makers since 2004 and each event has seen an increase in both the quantity and the quality of films submitted. For its 2017 festival, Oska Bright made a bold shift in its programming, introducing several new strands.

Recognition and resonance

If being a learning disabled film-maker is pretty niche, imagine how it feels to also be LGBTQ+.

That was the question posed by Matthew Kennedy, a queer-femme artist from Glasgow in his passionate keynote speech, in which he described his creative journey.

“Do not underestimate that feeling that you get when you see something or someone on screen being reflected back at you to which you can personally relate. This feeling of resonance and relation is so important to folks who are not represented well in film or the creative industries in general,” he said.

Kennedy’s message gets to the heart of diversity issues in the entertainment industry. The Queer Freedom screening that opened Oska Bright shone a light on four different LGBTQ+ lives.

A sepia-toned cartoon animation may seem an odd choice to tell a love story between two men with Down’s syndrome, but John and Michael, by Canadian artist Shiro Avni, is tender and affecting without being mawkish.

In contrast, Pili and Me, from Spanish director Ignacio Garcia Sanchez, shares a slice of life. Home movies are coupled with a commentary about an aunt-nephew relationship anyone would be proud of.

The six-minute documentary Life on Two Spectrums, by Elizabeth-Valentina Sutton, provides a glimpse of backstage angst and glamour about drag queen Dan “Tia Anna” Kahn. Wrapping up this eclectic mix was Kennedy’s collage art film Versions.

Queer Freedom was very diverse but all films dealt with the themes of identity, gender and one’s place in the world – a very welcome and important addition to the festival and one that will surely grow.

In numbers …

3,634 admissions to the festival over three days

63% of visitors had not been to the festival before (up from 37% in 2015)

95% of visitors said they were either likely or very likely to attend again

The #OBFF17 hashtag reached 83,000 people

The term “Oska Bright” term reached 110,000 people, including 18,000 on Facebook in just one month

Breaking taboos

The first evening was rounded off in great style by Irish feature film Sanctuary. This won awards and toured the world – and this was its UK premiere.

The actors of Galway’s Blue Teapot Theatre Company brought humour and pathos to a groundbreaking story of a couple’s illicit overnight stay in a hotel.

Sex between learning disabled adults was illegal in Ireland until February 2017 and Sanctuary, a Zanzibar Films production, helped change that law.

Sanctuary started out as a play before director Len Collins turned it into a film and the cast’s familiarity with the script, narrative arc and tone made for assured and nuanced performances. It was a brilliant ensemble work that posed lots of questions about trust, rights and independence with wit and integrity.

Day two saw another innovation – a morning for young film makers, with a screening of 10 shorts and a chance to gain an Arts Award Discover certificate.

It’s important for Oska Bright to maintain a role in developing film-making skills in young people. Supporting creativity in special educational needs schools and organisations ensures that Oska Bright helps generate new films and new audiences at each festival.

Thursday evening’s films were grouped under the headings Dreams and Window Into Our World. Twenty-five shorts spread over four hours is quite a marathon, but the individuality of the film makers’ visions and stories maintained attention throughout.

From a rich field, I particularly enjoyed the autobiographical Celeste; she may be obsessed with soap opera stars but is a TV natural herself. Germany’s Barner 16 collective were award winners in 2015, and their music videos never disappoint; Speed and Hatch, shown in the Dreams screenings, were highly imaginative and catchy.

Aqui Possible, from Spain, starts wonderfully. It’s about Enrike, who has Down’s syndrome and lives independently in a block of flats. He makes friends with his neighbour and together they plan a game-changing advertising campaign to normalise people with disabilities.

It’s a shame an editor didn’t call “cut” at times as the film was overstretched and became repetitive, which robbed it of impact, despite the strong performances from a mixed disability cast.

In contrast, Like A Star, which followed Italian actor Tiziano on a trip to Texas, was succinct and powerful, bringing out all the nuances of Tiziano’s character and his experience in this unfamiliar place.

A woodland wander

Throughout the festival, an installation by Arty Party, Four Solos in the Wild, gave visitors the chance to wander through a woodland grove and watch haunting dance films.

Several screening sessions had aftershow chats with the film-makers and a short radio play was performed by the Carousel radio team. In a nearby venue, Carousel artists William Hanekom and Sarah Watson exhibited new visual artwork on the theme of Wonderland. This diversity of activity meant the festival appealed to lots of different people and you could dip in and out of the main space between screenings.

Friday night saw the awards party, which celebrated the achievements of winners and runners-up in different categories.

For me, the Oska Bright team were the stars of the festival. Steered by Bruzas and Hellett, the event was totally owned by those who introduced screenings, led the talks and engaged with audiences.

This kind of peer-led festival is surely the best advocate for learning disability films and film-makers. The international reach of Oska Bright is a game-changer for the industry. As Kennedy puts it: “I do not claim to be an ambassador or be the sole representative of a specific community – I’m just someone who’s passionate about the work they’re doing and putting their own voice to it and, as for the future, this conversation or movement is just getting started and we’re not going away anytime soon.”

The next Oska Bright Film Festival is in 2019. Submissions are invited. See www.carousel.org.uk/oska-bright-film-festival

Winners and presenters

Best Story: The Mask, by Sharif Persaud, Project Art Works, presented by script editor Kate Leys

Best Documentary: Life on Two Spectrums by Elizabeth Valentina, presented by Catharine Des Forges, Independent Cinema Office

Best Choreography: Four Solos in the Wild by Arty Party, presented by Jon Linstrum, Arts Council England

Best Performance: Elyse Marinelli in Checkout, presented by actor Nicholas Pinnock

Best International Film: Man Without Direction (Sweden) presented by Mark Tainton, Adult Swim

Best Animation: The Odd Funeral by Felix Swahn (Sweden) presented by Lily Van Den Broecke, British Film Institute

Young People’s Award: Monster Party by Babington, Sherborne and Oakwood Schools, presented by Mo Marsh, Mayor of Brighton and Hove (above)

Outstanding Contribution to Cinema Award: Matthew Kennedy, presented by film director Debs Paterson

 

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