How to build a good life

Community Living

Amanda Topps

— Spring 2024

Christian, who was unresponsive and had been in institutions for decades, finally got the support to achieve the life he desired. Amanda Topps reports

Christian having hair cut

Christian had gained a complex reputation, which had kept him in hospitals for over 30 years. In December 2021, the local commissioner met Christian as part of a hospital review in Somerset. He found him curled up on a bean bag, looking very unkempt, wearing ragged clothes and with long, ungroomed hair and beard.

Christian was neither speaking nor responding to anyone. He was gaining nothing from being in an institutional setting and desperately needed to get out to regain his life.

The commissioner decided to engage community interest company LivesthroughFriends as expert support broker and commissioner to make this happen for Christian.

When LivesthroughFriends and its clinical partner Studio 3 started to build a relationship with Christian, he shared that he wanted to get out of hospital and live independently in his own home in Weston-super-Mare.

LivesthroughFriends, established in 2007, believes that everyone deserves a good life. It helps autistic people and people with learning disabilities who have gained complex reputations to get out of hospitals and institutions to implement what the organisation calls a good life plan.

We were told Christian would be hard to engage. This could not have been further from the truth

The company undertakes detailed planning and implementation roles, usually on behalf of statutory commissioners.

LivesthroughFriends has nine part-time executive and non-executive directors, and one part-time member of staff. Working in England, Scotland and Wales, it also partners with international organisations beyond the UK.

It is supporting 20 people to get their good life.

Given the system’s problems in progressing deinstitutionalisation and inclusion for people who have acquired very challenging reputations, LivesthroughFriends frequently undertakes pro bono work when approached by desperate families.

It works through three main steps to help people achieve a good life.

Step one: getting to know you

The first step to getting a good life is for LivesthroughFriends to start to get to know a person. This can be done in many different ways.

For some people, it’s doing an activity together such as walking, baking or caving. For others, it’s an informal chat or convening circle meetings (meetings where all participants have an equal voice) using person-centred planning tools.

Sometimes, we rely on family and loved ones to help us capture the essence of the person in their good life plan. A broad range of professionals are also spoken to.

We progress at the person’s own pace to build a good relationship so that, together, we can identify what really matters to them. If an individual does not have a support network, we work to build personal networks throughout this process.

We had been told that Christian would be hard to engage. Nothing could have been further from the truth.

Step two: focus on assets

The second step is to focus on what we call good life plans – with the emphasis on the person’s assets, gifts, skills and aspirations, not deficits.

We are clear that contributing and participating lifestyles are at the heart of a good life. We tend to pay more attention to this than strategies for behavioural management having learned that this is the key to sustained success. This helps us focus on what specifically will help people get a good life.

Next, we intentionally source the type of support provider that will help the person reach their goals and nurture a strong, resourceful and independent citizen who has agency and is valued for their contribution to their community.

We draw in clinical expertise to create a low-arousal plan (an approach to managing distress, which encourages stress reduction and de-escalation, with a focus on the behaviour of supporters). Professor Andy McDonnell, a clinical psychologist, developed this approach in the 1980s and in the 1990s established Studio 3, clinical partners of LivesthroughFriends.

With clinical expertise, we co-create personalised housing and support arrangements alongside a budget.

Step three: the right people

The third step is to work with organisations that have proactive, resilient leadership to undertake bespoke staff recruitment involving the person and their family. This means we can find people with the right character, skills and interests.

We then work alongside the person during their transition out of hospital and throughout the first year to develop supporters who take personal responsibility and are solutions focused and creative possibilities thinkers. This is so they grow as community workers, network builders and skilled people confident to positively manage risk.

Contributing and participating lifestyles are at the heart of a good life. We pay more attention to this than strategies for behavioural management

Hurdles

There are, of course, challenges.

A lack of communication around information and decision-making was one of the biggest problems when Christian was moving out of hospital. This had a significant negative impact on his mental and physical health.

A suitable permanent home could not be found in the time available so Christian moved into a temporary flat.

Without the tenacious support of the provider CJP Outreach Services, which employed someone to find accommodation, there would have been no one to act as tenant and leaseholder on behalf of Christian to secure the property for him and enable the move to happen.

Many ‘firsts’ for Christian

As for Christian’s new life, he has experienced many firsts since leaving hospital, enjoying bowling, the funfair and the beach.

Christian says he loves his new home and that he has enjoyed going to the barbers to get his hair and beard cut.

He has recently been asked to join a local pool team. He says he is a “whole new man!” His team describe him as a resourceful, kind, friendly, funny and genuine man.

In September 2023, Christian moved to his permanent home then enjoyed celebrating Christmas for the first time in a very long time.

Amanda Topps is a director at LivesthroughFriends

Christian after haircut

Christian after haircut

All aboard: how to put plans for a new life into practice

Several actions enable individuals to implement their good life plan:

  • Commissioners need to collaborate closely with the team, understand the purpose of the plan, be creative and take risks while intentionally and tenaciously removing
    any barriers, particularly regarding funding. An example is supporting the creative and flexible use of funds during transition to offer upfront payments to secure sustainability for the future
  • Supporting and planning the transition should be done at the person’s pace so they can start to build trust with their new team and carefully plan their move out of hospital. For Christian, this was important so that he did not feel overwhelmed with the move and knew what to expect. Staff showed him photos of the flat to help with this
  • It is important to hand pick the right values-based provider that will stick with the person and the purpose, maintain aspiration with and for them when they cannot, and be determined to support the move from hospital. The provider should actively support them through the development and delivery of the plan during the inevitable ups and downs of the initial months and, sometimes, for years
  • Organising housing is challenging: having everyone on board, including the provider, to create a solution is essential
  • Clear communication and collaboration are both essential to overcoming barriers and not allowing the system to dictate can’t-do, risk-averse thinking

Louche and luxurious

Simon Jarrett 

Simon Jarrett

— Spring 2024

Audience members with profound disabilities are invited into a high-end cocktail bar for a multisensory, immersive performance where everyone plays a part. Simon Jarrett raises a glass

Singer: The Bar at the Edge of Time

Arriving at the Tramshed shortly before this event was due to begin, I was told it might be starting a bit late as “the audience are still on their way”.

The Bar at the Edge of Time

Frozen Light Theatre

Tramshed, Woolwich

On UK tour until November 2024

This was the first time I’d heard such an unarguable explanation for a late start in any theatre and it was an indicator of the integrity, originality and, most of all, the superb performer-artist interactivity of this production.

Frozen Light creates original multisensory theatre for audiences with profound and multiple learning disabilities (PMLD).

When the (intentionally) small audience duly arrived some minutes later, we were ushered into a magical space, finding ourselves in a fully equipped luxurious cocktail bar complete with individual tables, leather seating and a distinct after-midnight feel. We were within The Bar at the Edge of Time, not in theatre seats looking at it.

Preparing a cocktail: The Bar at the Edge of Time
Photo: JMA Photography

From here, we are drawn into a sci-fi themed, cocktail-fuelled, multisensory journey through this delightful and simultaneously familiar and mysterious world that Frozen Light has created.

An excellent and multitalented cast of three – Burhan Kathawala, Ethan Pascal Peters and Gaz Tomlinson – are dressed as cocktail waiters and take on the roles of mixologists, crooners, musicians, dancers and hosts. They are our guides as, in Frozen Light’s own words, “gig theatre meets sensory spectacle”.

Everyone is offered a menu of cocktails and mocktails (it was a matinee, I went mocktail), but with a twist. We are invited to plunge our hands into coffee beans and other ingredients; limes are rubbed gently into hands so we can catch their scent. We get the full sensory experience of the cocktail before it is mixed and brought to us.

It was moving to watch one theatregoer, at first mistrustful, slowly buy into the sensory experience with the encouragement of his support worker.

In one beautiful section, the cast go to each audience member in turn and sing them a song, using their name. By this time, everyone is fully immersed in the world they have been invited into.

The lighting is perfect, the music and dance high quality and the interaction between performers and audience so deep that we have all forgotten about any fourth wall.

It all ends – and why not? – with a cascade of brightly coloured ping-pong balls from above, which we all throw to or even at each other and the performers and crew.

This was exhilarating stuff, not only because it is just so original and well done but also because it reaches its audience in a very deep way.

People with PMLD tend not to be a feature of late-night, high-end exotic cocktail bars nor experience crooners in louche but luxurious private nightclub surroundings.

Frozen Light has brought this to them, not as an amateurish imitation but as a cool, meticulous, fabulously detailed recreation of a world they are usually denied.

It was a privilege to be there and see the work of this company, who warmly invite their audiences into the wondrous worlds they create.

Read: A show for all senses

Joining the front line

Susanna Shapland 

Susanna Shapland

— Spring 2024

Many former institution inmates enlisted in the US armed forces in the Second World War, showing they had as much of a part to play in wartime as any other American. Susanna Shapland reports

Follow Me - US Army enlistment poster

In the decades leading up into the Second World War, the US saw a rise in enrolment at institutions for the “feeble minded”.

Simultaneously, budgets for these had been cut. This led in part to a surge in a number of “parole” programmes to reduce the population in institutions.

Paroled inmates were released into the community to live and work, often on the proviso that they were first sterilised.

This move underscored creeping suspicions regarding “mental deficiency”. Doubt had been cast upon the usefulness of IQ tests, and the “feeble minded” were displaying better social adjustment than predicted. Nevertheless, a general agreement persisted that they were biologically different to “normal” Americans so incurable.

Pearl Harbor (1941) and entry into the war by the United States changed everything.

With mass mobilisation, institution superintendents became aware that many of their parolees and runaways were succeeding in enlisting in the armed forces.

Many were pessimistic about the success of their charges in modern warfare, where skills such as reading, writing and mechanical aptitude would be required.

The pragmatism of mass mobilisation held sway. Military psychiatrists were loath to turn away any potential soldier because of a nebulous diagnosis

The American Association on Mental Deficiency published a proposal for the use of the “mentally deficient” in wartime, warning that the cost of finding the few who might successfully adapt could far outweigh their value.

Others suggested training them to do menial jobs to free up more “normal” men to go to the front.

The eugenicists took this further, suggesting that sending the “mentally deficient” to the front as cannon fodder was a sound way to protect the “healthy” and prevent a potential IQ imbalance should the former remain safe at home.

In the event, the pragmatism of mass mobilisation held sway. Up to 10,000 men were signed up every day at the start of conscription, and military psychiatrists were loath to turn away any potential soldier on the grounds of nebulous and irrelevant diagnoses.

Tests of IQ and mental age were deemed no longer appropriate in the armed forces, especially given that factors such as education, ethnicity and shyness skewed results, so new tests were devised.

These helped place recruits in positions suitable to their aptitudes, or identified those who could be sent on training courses to bring them up to army standards.

Many parolees brought pride to their former institutions through their wartime conduct. Their success was attributed to character growth and patriotism that enabled them to transcend the traits that had seen them incarcerated, such as low IQ or illiteracy.

Although some failed to adjust, usually due to behavioural issues, there were plenty of reports of parolees adapting to life in the forces and being promoted up the ranks.

Those on the home front also played their part, taking on the work of staff who had been called up, or joining in the patriotic work of donating blood, giving money or carrying out air-raid duty or general volunteer work.

The conduct of parolees in the Second World War had challenged many aspects of the label “mental deficiency”: how it was defined, to whom it was applied and what value there was in applying it.

The war had shown that the “mentally deficient” had as much of a part to play as any of their fellow countrymen, and that they relished the opportunity to play that part. In so doing, they undermined the tools that had kept them apart from society.

However, the end of the war brought an end to the labour shortage, and an end to this period of normalisation.

The criticisms of the IQ test and the acknowledgement of the common humanity of every member of US society became muted as soldiers returned to resume their economic and societal roles and the “mentally deficient” were squeezed out once again.

Source: Gelb S. “Mental deficients” fighting fascism: the unplanned normalization of World War II. In: Noll S, Trent Jr JW (eds). Mental Retardation in America: a Historical Reader. New York: New York University Press; 2004: 308-321

Joining the dots

Saba Salman 

Saba Salman

— Spring 2024

Thomas Owen’s artworks layer intricate detail and tiny spots alongside vibrant colours. Saba Salman hears from him and support worker Suzana Stoyanova

Artwork of colourful jumpers

“My circles in my drawings are round like the biscuits I have with my tea, like a wheel,” says artist Thomas Owen.

Owen, a Londoner whose artistic passion is encouraged by his support provider Certitude, explains: “I always start my drawings with a wheel. Then I draw something that inspires me, like soldiers or jumpers, and then it changes into something else as I do more.” Often, he does not know what a drawing will become.

This careful, intricate process is described by London charity ActionSpace, where he is a resident artist, as “complexly layered images that explore what is happening around him”.

According to ActionSpace, his creative skill includes great attention to detail and perspective, using different angles as he “patchworks together vibrant blocks combining abstracted and figurative forms”.

Look closely at the artist’s work and you can see how he hones in on details that others might overlook, then uses that minute element as an anchor to build or recreate a scene.

Owen, who lives in supported living, says he enjoys drawing because “it is different”: “When I finish a drawing, I feel tremendous.”

He says he has been drawing “for as long as I can remember”. “I often draw jumpers, lots of different types and colours. They’re like soldiers on a parade,” he says. “I like to draw different things I like too, like Bob Dylan or food. I also love drinking tea, but drawing is special to me.

“The people who support me understand my art is important to me. Wherever I walk, I always have my notepad and pen. It helps me communicate through my drawing.”

Owen’s support worker at Certitude is Suzana Stoyanova. A cluster manager (who manages several services), she accompanies Thomas to his nearby studio, ensuring he has his favourite art materials with him.

Stoyanova, who began supporting Owen almost two years ago, helps him on “pen day” – when he goes out to buy his pens for his art – and enables him to attend other artists’ exhibitions.

He says: “Suzana and the team support me with all parts of my day-to-day living. It is important to have good support to let me live the life I want to live.”

Stoyanova enjoys that Owen is “an amazing artist” and admires his energy and positivity: “I enjoy supporting Tom because he’s curious, and I always find our conversations very special and intriguing. It energises and inspires me to think that we all carry a gift unique to us and can inspire others.”

Stoyanova started as a support worker 10 years ago and has been a manager for five years.

“I love supporting people to live their lives, doing the things that make them happy,” she says. “And it makes me feel joyous that I contribute to making a difference to someone’s life.”

Good support involves care, love, patience, perseverance and “going the extra mile to support someone’s quality of life,” she says.

Among her favourite works by Owen is one of his many jumpers pieces, which she admires for their colours and patterns.

“I am fascinated by his patience since he uses dots mainly in producing a final piece. He looks at his surroundings, places and patterns and then combines abstract and figurative forms. In the end, it becomes a very structured piece.”

Owen, who was supported by Stoyanova to share this thoughts with Community Living, often draws as he speaks as he says it helps him talk about what inspires him.

Does he have a quick tip for anyone who wants to be creative but is too nervous? “Use a black pen – and start with 1,000 dots.”

Thomas Owen with Suzana Stoyanova
Thomas Owen with Suzana Stoyanova. Photo: Certitude

Laughing Boy: story on the stage

Community Living

Stephen Unwin

— Spring 2024

A vivid drama about Connor Sparrowhawk and a campaign for justice is to be staged in a central London theatre. Stephen Unwin describes the inspiration and message behind his play

Laughing Boy

It was just over 10 years ago, on 4 July 2013, when 18-year-old Connor Sparrowhawk, known as Laughing Boy or LB, drowned in the bath in a short-term assessment and treatment unit run by Southern Health NHS trust in Oxford. Connor was autistic and had a learning disability and epilepsy.

I met his mother, Sara Ryan, at a disability event in 2015 and watched the #JusticeforLB campaign develop on social media and in the press and did the little I could to support it.

But it wasn’t until I read her brilliant book Justice for Laughing Boy in 2018 that I really started to understand what had happened and why it mattered so much.

It’s personal

A few years ago, armed with that book, I set out to dramatise the story for the stage; Laughing Boy will premiere at the Jermyn Street Theatre in London on 25 April.

I wanted to bring the story to the stage partly because it felt personal.

My second son Joey is just a year younger than Connor and, like Connor, has learning disabilities and epilepsy. Like Connor, he needs help with certain things. Also like Connor, he generates enormous joy in his family and friends, and laughter and love surround him wherever he goes.

But there the similarities end. Because Connor was taken from his family home and plunged into a hell that is almost impossible to comprehend.

Slade House (now thankfully closed) was one of the deeply dysfunctional NHS institutions set up to help (mostly) autistic people whose care has broken down and who could benefit from a short, focused intervention.

The dreadful fact is, however, that these places are not fit for purpose. Autistic people and those with learning disabilities are often locked away in them for months, years even, largely forgotten about, except for their desperate families who do whatever they can to get them out.

Connor spent 107 miserable and lonely days in Slade House; no proper assessment was made, no treatment offered, his freedoms were restricted, visits were controlled and, finally, despite repeated warnings, he was left unattended in a bath where he drowned while having an epileptic seizure.

In the face of the family’s unimaginable grief, a growing campaign for justice was created, not just to establish Southern Health’s (frequently denied) responsibility for this entirely avoidable death of a healthy young man but also to expose the many cases of neglect, cruelty and abuse.

This campaign was a model of its kind, drawing together people of good will from many backgrounds and with different skills, who found themselves confronted by an appalling culture of corporate buck passing, dead-eyed denial and the vilest kind of victim blaming.

Eventually, the world took notice.

I want not just to tell audiences about what happened to Connor and his family but also to help them understand the difficulties faced by so many people and those close to them today.

Drama versus realism

It felt strange trying to give dramatic shape to a group of people who are – with one tragic exception – very much still with us. I was determined to respect their experiences and allow audiences to feel something of their grief, their rage and their determination to create a better world. But, of course, I knew it also had to be a vivid drama. Striking the right balance was hard.

Fortunately, I had two things on my side.

The first was Sara’s book, which tells us so much about the everyday life of Connor and his family. She lets us in a way that is honest, revealing and, as with all the best writing, rich with contradiction.

She offers an overwhelmingly powerful and detailed account of what led up to her son’s death and even intersperses the book with brief imaginary dialogues with Connor which I have been able to transfer almost verbatim.

She also explains (and celebrates) how the #JusticeforLB campaign emerged and achieved so much in the face of bureaucratic obfuscation and the massed ranks of well-paid chief executives and their expensive lawyers.

I was also grateful to have Sara’s unwavering support for the project and have been constantly touched by her willingness to check my factual errors, correct my misunderstandings and prompt me to be better, bolder and braver.

I would readily understand if she felt she couldn’t face revisiting the pain, but I think she knows that one of the best ways of working for the rights and dignities of people with learning disabilities today is to show just how badly things can go wrong.

Adapting a story like this for the stage is quite a challenge; scores of people were involved and the action took place in dozens of locations, but I hope I’ve found a way of presenting it economically, vividly and with a clear sense of purpose. Time will tell.

Maybe I’m a glutton for punishment or perhaps I’m just the right person for the job, but I’m delighted to be directing the play too. Certainly in writing it, I imagined exactly how the production might look and sound.

Connor and Stan

Finding a theatre

It took time to find a theatre that was prepared to invest the money, resources and reputation to stage it, reflecting perhaps the low profile that people with learning disabilities enjoy even in – especially in, perhaps – establishment circles.

It says something that it is the unsubsidised commercial theatre that has taken it to heart. I’m grateful, touched and moved that artistic director Stella Powell-Jones and executive producer David Doyle at the tiny Jermyn Street Theatre are presenting this spring, in co-production with Danny Moar, who is chief executive of the Theatre Royal Bath. After that, hopefully, the play will tour.

I feel a real responsibility to honour Connor’s memory in the best way I can: his family, his friends and everyone who was involved in the campaign deserve no less.

This is precious cargo and I’d better not mess it up.

Justice for Laughing Boy is no dusty memoir: it is a living, breathing campaign that has achieved so much. But there is still so much to do if people like Joey are to be granted the fundamental human rights and dignities that Connor was so brutally denied.

For the dreadful fact is that the approximately 1.5 million people across the country who have some level of learning disability are still forgotten, neglected and mistreated.

The culture of appalling negligence and evasion described in Justice for Laughing Boy is everywhere, and Connor Sparrowhawk wasn’t the first young person to die in an institution supposedly set up to help and, tragically, won’t be the last.

In 2017, I wrote a play called All Our Children about the Nazi persecution of disabled children which was staged at Jermyn Street. Tragically, Laughing Boy is its dreadful and logical sequel.

A change has to come. Maybe this play can, in some small way, help to make a difference.

Theatre poster: Laughing Boy

Laughing Boy by Stephen Unwin, after Justice for Laughing Boy by Sara Ryan, is at the Jermyn Street Theatre from 25 April and at the Theatre Royal Bath from 4 June. This article is taken from www.stephenunwin.uk

Photos: Sara Ryan

Laughing Boy: relaxed shows

There will be evening performances on 1 and 10 May and matinees on 4 and 7 May at Jermyn Street Theatre that are relaxed. Adaptations include:

  • Allowing audience members to leave and enter the auditorium freely
  • House lights remaining slightly raised
  • Lower-volume music and sound effects
  • Reductions in lighting effects such as flashing lights
  • A space to sit in the foyer and get a bottle of water

More stories about:

Medieval to modern

Simon Jarrett 

Simon Jarrett

— Spring 2024

Assumptions and attitudes regarding the value and abilities of people with learning disabilities can be turned around by changing circumstances, as this history by Simon Jarrett shows. Below is an edited extract covering the medieval era, the First World War and Camphill communities.

In medieval times, the term “idiocy” could mean simply an uneducated, ignorant person and, for the small, educated elite of this period, that description applied to most people.

A History of Disability in England: from the Medieval Period to the Present Day

Simon Jarrett

Historic England/Liverpool University Press, 2023

However, it could have a more specific meaning: a person with a more marked deficiency who might struggle to understand the basics of everyday life.

Idiocy, because of its incurable, unchanging nature, was of no interest to doctors, whose trade depended on the ability to cure.
The responsibility for care for the idiot person remained with the family and the community.

Boys at Camphill planting
An early Camphill community: these “healing environments” brought together political and social refugees

Nor was idiocy seen as a religious matter. Being natural – so determined by God – it was not generally seen as a mark of sin.
Overwhelmingly, idiocy was perceived as a practical matter, related to ability to function in society. Those who might be diagnosed as having a moderate learning disability were simply able to get on with it in a society where most people were illiterate and the ability to “get by” was the main prerequisite of daily life.

War work

In 1917, as the First World War raged, Leslie Scott, chairman of the Central Association for the Care of the Mentally Defective, turned his mind to the peace.

“There are,” he wrote, “large numbers of low-grade, even imbecile defectives, now in remunerative work who will assuredly leave their work when there is any displacement of labour, and we are anxious to make plans for their protection.”

The country’s need for manpower, with so many fighting on the front, had changed almost overnight, with the perception of the “mentally deficient” changing from people incapable of work to useful members of the workforce.

A draconian Mental Deficiency Act had been passed in 1913. This had characterised the “mentally deficient” as incapable, non-productive and a threat to the health of the nation. The legislation sought their eventual eradication through institutionalisation and close surveillance.

The act, however, was put on hold by war. Many thousands of “mentally deficient” people took up valuable and skilled roles from 1914 – some joined the armed forces.

It was a dramatic and rapid transformation from useless to useful – a stunning example of how social attitudes, circumstances and assumptions can construct the meaning of disability at any time.

Creating their own community

The first Camphill school was founded by a group of German and Austrian Jewish refugees from Nazism. Led by Karl König, a Christian convert, they wanted to create a new form of “healing environment” for children with special needs.

They rejected the fashionable idea of the time that some children were ineducable. They wanted to create a community where children with disabilities and (unpaid) staff would live and share their lives to foster mutual help and understanding.

At their first community in Aberdeen in 1940, children with learning disabilities were taught by and lived with mainly Jewish refugee educators. The daily language in the early years was German. Today, there are 22 communities in Britain and many more around the world.

Towards the end of his life, Karl König recalled what brought together this unlikely alliance in their own community, outside mainstream society: “The handicapped children were in a similar position to ours. They were refugees from a society which did not want to accept them as part of their community. We were political, these children social, refugees.”

Two boys on horseback at CamphillPhotos: Robin Jackson

Shalim Ali: nothing is better than being with friends and dancing

Shalim Ali 

Shalim Ali

— Spring 2024

Through DJ-ing, I make a difference to people by playing music they love – and having a night out builds independence so clubgoers should be supported to stay out late

Shalim Ali DJing

It is important to have things in your life that you are passionate about.

For me, it is music and my work as part of the DJ crew for arts charity Heart n Soul. In a previous Community Living column (autumn 2022), I shared how the organisation feels like my second family. I DJ once a month at a club in east London with the DJ crew.

To be a good DJ, you have to think of the dance floor, not yourself, and bring in the crowd.

I play 80s and 90s tracks and, when the crowd goes mad, it is such a buzz. It is heartwarming and a blessing. I get paid to DJ but it is not just about the money.

DJ-ing makes me happy because I make a difference to people by playing music they love.

I got involved with Heart n Soul when I came across a flyer for a disco night run by the charity when I was 15.

Newbie at the disco

I had never been to a disco but I have always loved music and grew up listening to my brothers’ vinyl, from Michael Jackson to Prince and Madonna.

My brother drove me from our home in Camberwell, south London, to the venue in Deptford, 25 minutes away. I was nervous but focusing on the music made me more confident.

There were loads of people enjoying old school disco. I had a great night and joined the Squidz Club, the charity’s club night for young people.

I asked how I could become a DJ and staff supported me to learn. I had a mentor to teach me practical skills like how to mix.

I got my first gig on a Friday night at the charity’s base in Deptford when I was 20. I brought my own CDs. It was amazing, everyone said I put on a really good show. I played 1990s boy bands such as Backstreet Boys and Boyz II Men as well as some Britney Spears.

My favourite tracks include Prince’s Purple Rain and Tracy Chapman’s Fast Car. My idols are DJs such as Timbaland, Dr Dre and Fatboy Slim. I like the way they mix and pull the crowd in – and they are amazing record producers too.

Music makes me feel excited and happy and makes me want to dance. There’s nothing better than being out with friends and dancing. Sharing our love of music makes me smile.

Having a social life is so important. If you go to gigs, you have to use your common sense and this builds your independence. It is so wrong that, in some services, staff will not support people to go out late. People are not babies – they are adults and should have the choice to spend their lives doing things they enjoy.

In the future, I’d like to encourage people from diverse backgrounds to come to DJ nights and clubs. I’d like to support more female DJs as the industry is still male dominated. I’d love to be able to design a club night and be a creative producer as well as a DJ.

On the board

I became a trustee at Heart n Soul in 2014. The organisation saw I was a hard worker and dedicated to its work. I knew I could bring something to the table.

If someone with a learning disability is interested in being a trustee, I suggest they research what a trustee does and how board meetings are run.

People who need support are entitled to reasonable adjustments, such as going at a slower pace or having simplified information.

As a British Bangladeshi, what appeals to me is breaking the barriers; I think trustee boards should involve a range of people from different backgrounds. As well as this, organisations should reflect the people they work with – on their boards as well as in their staff team.

How to be a citizen

Community Living

Wendy Perez and Simon Duffy

— Spring 2024

In their book, part story and part guide, self-advocate Wendy Perez and activist Simon Duffy set out the building blocks to being a citizen. Each chapter in this book by and for people with learning disabilities offers ideas, red flags and a story from Perez’ life. Below is an edited extract.

My name is Wendy. I am a person with a learning difficulty and I live my life to the fullest, writes Wendy Perez.

I was always told that I would not be able to do anything; but I got tired of being told that. I proved people wrong.

Cover: Everyday Citizenship

Everyday Citizenship: Seven Keys to a Life Well Lived

Wendy Perez and Simon Duffy
Illustrations: Ester Ortega

Red Press, 2024, £12.99

Simon Duffy’s book Keys to Citizenship gave people who run social care services lots of ideas about how to do things differently.

Since this was published in 2003, a lively global community has developed. Keys to Citizenship is used in lots of different ways to make people’s lives better.

This inspired me to write this book with Simon, to give everyone ideas about citizenship, not just service providers.

I make choices about my life that are right for me. I have my own flat and my own company. I help people with learning disabilities have more control over their lives.

I am confident and independent. I have travelled around the world on my own. I know when I am taking risks and I take responsibility for them.

I try to change people’s attitudes by doing this and by showing them that they can do it too. I wrote the stories in this book to show people how to start holding the keys to their own lives with the right support.

Follow your dream, then people will believe in you and help you. No dream is too small or too big. See what you can achieve, and don’t ever stop!

This book is full of practical wisdom and insight to help you live a life of meaning. It asks you the right questions to help you find your own answers, writes Simon Duffy.

But it’s only the beginning: the real journey to citizenship lies ahead. Let’s change the world by each becoming the best citizen we can be.

Everyone is a citizen and deserves a life well lived. The seven keys show you how to achieve that.

Yet sometimes there are barriers to citizenship:

  • Unfair laws that don’t give us the rights we need
  • Prejudices that stop people seeing each other for who they really are
  • Not having the power we need.

Citizen Network is a global community to support a world where everyone matters, inspired by the seven keys. You can join it for free.

At citizen-network.org, you can find information to help you, and find member organisations near you. A community within the network (keystocitizenship.com) is using the seven keys in interesting ways.

Citizenship is important because it means being treated with respect and dignity. Citizens are both equal and different.

 

The seven keys

Everyone is a citizen. It doesn’t matter what body or gifts you’re born with – everyone can have a life well lived. Everyday citizenship is a life with:

1. Meaning Enjoy life and make a difference

2. Freedom Take charge of your own life

3. Money Get the money you need to live

4. Help Get good help from other people

5. Home Find a place where you belong

6. Community Take part in the life of your community

7. Love Enjoy friendship, love and family

A fun way to life and social skills

Community Living

Carly Newsholme and Peter Dawson-Booth

— Spring 2024

Weekly social gaming days involving a range of sensory and digital activities are boosting mental health and human connection, say Carly Newsholme and Peter Dawson-Booth

Young wman holding game gards

Use Your Nose is the newest group activity played during sensory and digital gaming sessions for adults who have learning disabilities.

The sensory game involves staff and members of Connect The Dots, based in Bradford, taking turns at guessing the fragrance in a jar – which can be anything from perfume to the smell of the ocean.

If you guess right, you move your tiny playing pot on to the gaming board – like bingo. The activity is simple, inclusive and hilarious, inspiring conversation and debating skills, for example: “What’s the smell? Do you like it? What memories does it remind you of?”

Connect The Dots opened in August 2023 to support people with learning disabilities to lead happy, independent and fulfilling lives. It provides a space for meaningful, social activities that promote independence, inclusion and life skills. Open three days a week at a community centre, it has four staff and nine members aged between 19 and 29 years.

Offered alongside cooking, crafts and gardening, the social gaming day every Thursday aims to challenge perceptions about the activity. It can be perceived poorly because online games can often have negative effects on wellbeing.

Connect The Dots wants to change people’s minds about that and show how inclusive social gaming can be because some activities can promote positive mental health and connections.

Social gaming is usually defined as playing computer games with or against other people, using the internet or social media. At Connect The Dots, it means playing games together – board games, quizzes, bingo and lots of computer-based games – to have fun and learn new things in a group environment.

If you focus on a group game, you forget about your worries and it is a great way to communicate with others and feel less isolated. You can build confidence and develop your tech skills and digital literacy; at Connect The Dots, members have learned to set up equipment such as the Nintendo Switch or Wii themselves.

Party games on the Nintendo Switch, such as Mario Party and Everybody One Two Switch, are popular. Everyone can join in weekly quizzes on a website called Kahoot because the answers are based on multiple choice – if you are not sure of the answer, you can just guess.

In the future, Connect The Dots plans to organise social gaming trips so people can take part in laser tag, escape rooms and virtual reality games. In the longer term, the plan is to open five days a week.

It is incredible to see how much fun everyone has, and the smiles when people connect with each other. One of my favourite moments was when our member Reece Gadsby taught us how to play the Higher or Lower game with playing cards. That was a lovely moment.

Carly Newsholme is founder and Peter Dawson-Booth is a member and quizmaster at Connect The Dots

How to set up a games club

Social gamer Peter Dawson-Booth offers some top tips on setting up a gaming club.

  • Be open to try new things – it can be scary but also very exciting
  • Think about the games you already like and start with those
  • Visit your nearest board game shop for advice and information about which games to try
  • Make sure to have games for all abilities so everyone can join in
  • Have a mixture of styles of games. We have a good range of board games, card games, team computer games and physical games such as table football, pool and air hockey

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Use of lived experience to tackle attitudes and boost understanding

Juliet Diener 

Juliet Diener

— Spring 2024

Studies draw on first-hand experiences to change negative views and for the basis of an empathetic approach to identify what people with limited verbal ability are thinking, says Juliet Diener

Community Living

Drawing on lived experience could help change attitudes to disability, and an empathetic approach could be used to understand perspectives.

Self-advocacy versus prejudice

Robinson S, Newman C, Idle J et al. How do self‐advocates use community development to change attitudes to disability? British Journal of Learning Disabilities. 11 July 2023.

This study asked the question: how do self‐advocacy groups work to change community attitudes, which are predominantly negative towards people with intellectual disabilities?

The researchers adopted a human rights model of disability that makes evident the roles of government and the law.

They make the case for changing attitudes using a community development approach called the cycle of praxis to frame how these groups facilitate change in community attitudes.

The cycle of praxis prioritises lived experience – in this case, that of a group of self-advocates. It is
“a cycle of experience, learning and reflection, synthesis and planning, and implementation and review”.

Analysis was carried out involving people with roles in advocacy, community, business, government and academia. Fieldwork interviews focused on understanding the conditions needed to change attitudes towards disability.

People with intellectual disability participated, with material adapted to their needs.

The analysis identified how acting on findings from lived experience and the practices of self-advocacy groups could bring about changes in community attitudes.

It concluded that government investment in self-advocacy could spark such changes on a wider scale.

Empathy to understand

Skarsaune SN. Persons with profound and multiple learning disabilities as subjects of knowledge: Exploring the possibilities of empathy. British Journal of Learning Disabilities. 31 July 2023.

People with profound and multiple learning disabilities (PMLD) are isolated from research opportunities and having an impact on society.

Their needs are complex and they often rely on others to infer their wants and expressions. Taking part fully in society is complex for them as verbal communication is limited.

This study investigated how the perspectives of those with PMLD could be identified through the use of empathy.

Three people with PMLD (Erik, Karen and Vera) took part in an ethnographic study looking at their
lived experience. Ten professionals involved in their care needs facilitated the study, with evidence gathered over 3-4 months.

Researchers analysed the relational dynamic of empathy; they described the actions of the professionals and the emotional responses of those with PMLD to these actions.

This was done through observing everyday activities, some of which were filmed.

The study included detailed descriptions of the relation between the person receiving services and the professional.

The study found that people with PMLD have competencies and ways of being “that might fuel empathy”. It suggested that if professionals allowed for the otherness of a person, empathy might contribute to recognising this often overlooked part of our population as “subjects of knowledge”.

This fascinating study shares the complexities of researching within this group.

Speaking for inpatients

Community Living

Gail Petty

— Spring 2024

A review has found that advocacy for people in mental health settings may not meet needs and is often led by processes rather than people. A national approach is needed, says Gail Petty

Writing on clipboard in a hospital setting

Research has highlighted the need for a national advocacy strategy for those with learning disabilities and autistic people who are inpatients in mental health settings.

The study, A Review of Advocacy for People with a Learning Disability and Autistic People in Mental Health Settings, was produced by social change body the National Development Team for Inclusion (NDTi).

Independent advocacy supports people to get the life they want, be heard and have their rights upheld. This is critical when people are placed in restrictive environments. Approximately 2,030 individuals with learning disabilities and autism are in mental health settings.

NHS England commissioned NDTi with partner organisations to discover the barriers to effective, timely independent advocacy and identify factors enabling good advocacy. Our partners were Bringing us Together, the Challenging Behaviour Foundation, Speakup Self Advocacy and People First Independent Advocacy.

The review shows provision does not always meet needs; it is also often disjointed and led by processes rather than the requirements of people drawing on advocacy support.

It also calls for people to have consistent access to independent advocacy – high-quality, person-led, robust independent support, delivered through trusted relationships with advocates. Advocates also need time to really listen to people and understand to ensure their voices are heard and are central to decisions and that rights are upheld.

The findings reflect the views of more than 500 individuals and groups, including people with learning disabilities, autistic people, advocates, family members and self-advocacy organisations.

One advocate who participated anonymously said they had supported people in mental health settings who were in seclusion: “Getting down to the seclusion unit and trying to forge an advocacy relationship in such circumstances is very difficult.”

Getting down to the seclusion unit and trying to forge an advocacy relationship in such circumstances is very difficult

A family carer said: “Really good support can only be offered by well-informed, qualified individuals who are independent of the responsible agencies.”

An advocacy manager described what was needed: “Until the culture within hospitals moves towards open cultures and social models [of disability], the advocate will not be able to embed a culture of human rights.”

Next step

NDTi is calling for a national advocacy strategy and a multi-agency approach to achieve advocacy that meets needs. It is keen to work with people and families, the advocacy sector, government agencies and mental health services to collectively address the issues identified and create change.

It is essential that government, health and social care agencies – including providers of independent advocacy – continue to work proactively to address the issues identified in the review.

Gail Petty is advocacy programme lead at NDTi

 

What is required for good advocacy

People need:

  • Advocacy to be more easily available, commissioned independently and more consistent across areas and regions
  • Access to more holistic, longer-term, person-led advocacy, and the ability to build a relationship with their advocate
  • Advocates to be present on the ward, including in children and young people’s units
  • Advocates to work alongside family members

Advocates need:

  • Clear standards so advocates have better training and support
  • Support in their practice to ensure they are providing effective, person-led, independent support
  • To exercise professional curiosity and have a good understanding of human rights and safeguarding to ensure they provide effective support

What the system needs:

  • Advocacy should be monitored to ensure adequate availability and quality in each region
  • People with a learning disability and autistic people should have key roles in ensuring advocacy is meeting people’s needs and hospitals are listening to people properly
  • To ensure we achieve the goals above, we need a national advocacy strategy and task force to plan and action the change we need to see

Musical magic

Saba Salman 

Saba Salman

— Spring 2024

An album of songs has been written and recorded by young people working with music industry professionals. Saba Salman was on the guest list

Young people recording music for The Kent Album Project

Love, community, creativity, ambition, determination and a gentler pace of life are among the concepts celebrated in an album of music by young people with learning disabilities.

The Kent Album Project, launched at the Gulbenkian Arts Centre in Canterbury late last year, features original songs inspired by the 13 districts of Kent and Medway. Each track was written and recorded by autistic and learning disabled young people from each area.

Chatham-based charity Square Pegs Arts worked with more than 150 young people and 65 local organisations over two years to create songs celebrating Kent and its young creatives.

The charity gathered groups from schools and community organisations. Abilities and backgrounds varied, but all were inspired by their communities to compose lyrics and ideas for melodies in a series of songwriting workshops.

Square Pegs then took participants to professional recording studios around the region to work with producers and session musicians and create songs for commercial release.

The tracks include On the Up from the Swale group, with lyrics including: “Now I’m free to be me, and living life without a limit could just be our destiny.” The Gravesham group’s song, Take a Look Around, observes: “In a world that moves too fast, sometimes we need to pause and make the moment last.”

Seen in a new light

Nadia Higson, whose music-loving adult son Peter took part in the Tunbridge Wells song, Tunbridge Wells Rocks, says: “Peter has a very limited social life so it was lovely to see him engaging in a creative group activity and having his ability to improvise a tune appreciated. Also, I think the friends and family members with whom I shared our track suddenly saw him in a new light as someone with skills of his own.”

The project, as Nadia says, enables people who are so often overlooked to show what they can do. She adds: “It also provides a great boost to their confidence. I know from talking to others that the recording sessions made them feel like rock stars! They were bubbling over about what they had done.”

Peter, who is autistic, was invited to take part in the album through Sevenoaks-based inclusive music group Band without Boundaries, which he joined a year ago.

We wanted to give them all an unforgettable experience put out work to a professional standard

He has had keyboard lessons since he was 12, has passed his grade 8 exam and loves performing and all kinds of music, especially jazz and swing. Peter has played at the Maidstone Music Festival and in amateur local concerts.

For the project, he joined a workshop last summer at a primary school in Tunbridge Wells. Participants worked in small groups, crafting lyrics and melodies, with Peter composing a tune on his keyboard to accompany the words. His playing forms the introduction to the final version of the song.

Peter says “It was fun. I enjoyed the workshop where I played the keyboard. At the launch, I enjoyed the film and listening to the songs.”

Paul Richards from Square Pegs Arts, who is music lead and project manager for the Kent Album Project, explains what sparked the idea: “We wanted to reach new young people and spread our work across a wider area. We’ve been providing projects and opportunities for nearly 20 years but tend to have the same, albeit fairly large, cohort of young people sign up and we wanted to find a way to include more people.”

He adds that the charity was keen to work more with others: “Collaborative work and practice sharing is mutually beneficial but so many groups and organisations, especially the small ones, don’t always have the capacity to make it happen.”

For the charity, a focus on the abilities of the participants – not their disabilities – was vital.

Paul says: “We feel passionately about bringing the best out of each and every person we work with and allowing them to shine in a dignified, legitimate way.

“We believe that this album has done exactly that, not only in allowing them to learn about the songwriting process but also to visit the top studios in Kent to record and work with industry professionals to showcase their musical ideas and talents.

“We wanted to give them all a truly unforgettable experience and to put out work to a professional standard in the same way as any established recording artist would do.”

Another highlight was the collaborative, inclusive approach regarding differing abilities.

Gillian Buisson took her sons Luke, 20, and Daniel, 13, to the Tunbridge Wells sessions. Daniel helps to care for his older autistic brother. All three joined in.

All together now

Gillian says: “It was a fantastic day out at a recording studio. We were treated like we were celebrities doing a recording. This was the most amazing thing about the project – at no point did it feel dumbed down for special needs. It was adapted to be inclusive but still allowed everyone to input at whatever their level was.”

She adds: “So often, we just have something that is solely for the special needs person or solely for carers. This project was so different as both were included together.”

When Luke, who does not usually speak much, saw his name on the big screen at the album launch, he beamed at his mother and said: “That’s my name.” And Gillian recalls that when the family heard the song for the first time, Luke said: “That’s me, I think I heard me.”

The Kent Album Project is available to stream on Spotify, Amazon, iTunes and YouTube

Photos: Timothy Leek

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Personal, provocative and fundamentally free

Simon Jarrett 

Simon Jarrett

— Spring 2024

Danny Smith expresses himself through emotionally honest dance, a defiant naked portrait and a drag alter ego. Simon Jarrett views a trio of events

Danny Smith on stage

Danny Smith is something of a one-person performing arts phenomenon, dancing the story of his life as a young man with Down syndrome through his drag alter ego Trixie Pixie Lox, posing provocatively and defiantly naked for a portrait and creating a spectacular dance for the camera about the complex layers of his very buoyant and captivating personality.

Dance
Danny Smith – This is Me
Wellcome Collection, London

Art
Danny Smith
Deborah Kelly and collaborators
Being Human
Wellcome Collection, London

Video
The Shadowlight Artists: Journeys
Old Fire Station, Oxford

In This is Me, he performed his life story through live dance. During his energetic and emotionally honest performance. Smith, all in white and with bleached hair, moved expertly to show he is whoever he wants to be, backed by a terrific group of dancers.

It was a mesmerising 15 minutes, and always very much Smith’s show – uncompromising, truthful and hard hitting. It was very fitting that the key number in the performance was Queen’s I Want To Break Free.

In an adjacent room hung a large portrait of Smith by Deborah Kelly and collaborators, who included Smith himself. Their photo collage reflects Smith’s identity, dreams and life story. It is a taboo-breaking naked portrait, with Smith’s characteristic joyfulness and don’t-give-a-damn, full-on commitment to his art shining like a unashamedly in a dark age of anxiety about learning disabled bodies and minds. View it at https://tinyurl.com/38c66pfj.

Asked in a Q&A after his show by one of his dancers why he had chosen to pose naked, Smith simply replied: “It’s very important to me.” To which I can only reply, hats off to you, Danny Smith. Being able to express his body in the way he sees fit is, for him, a fundamental freedom.

Smith has also been involved in a great exhibition by the Shadowlands Artist Collective, which creates new work championing learning-disabled and autistic artists.

On display were three fine video pieces. Wendy Belcher’s digital collage on her experience as an autistic person of the loss of her dog is intensely moving and beautifully made.

So is Tom Breach’s animation about life as an autistic adult, which skilfully manages to be very honest, funny, sad and hopeful all at the same time.

He has a fine track record in animated shorts behind him, and appears to be, deservedly, going places.

Fantastic world

Artist Richard Hunt is an excellent colourist, employing exquisite shading, who creates intriguing, not-quite-abstract, not-quite-representational pieces – his work can make you stop and reflect as you peek into his world of fantastical ideas.

Colourful collage by Richard Hunt
Colourful collage by Richard Hunt. Photo: Richard Hunt

Finally, Smith cropped up here too, in his home city, with a dance-for-camera video where we see Trixie Pixie Lox joyfully giving it her all and celebrated by Smith’s family and friends.

A grim breach of human rights

Community Living

Catriona Rubens and Alison Millar

— Spring 2024

The government has issued an apology to both a care home resident and his mother following systematic neglect and cruelty. Catriona Rubens and Alison Millar report

Open door to small room

Following a landmark ruling, the health and social care secretary has apologised for the abuse and human rights breaches experienced by a learning disabled and autistic man at a Devon care home.

The apology, issued by Victoria Atkins earlier this year, was part of a settlement approved by the high court late last year.

Ben was subjected to a regime of cruel and inhumane treatment at Veilstone care home, where he lived between May 2010 and October 2011. This included excessive restraint, denial of family contact and the repeated use of a “quiet room” as punishment.

The claim under the Human Rights Act was brought against the local authority and NHS commissioners of Ben’s placement at Veilstone – Devon County Council as well as NHS Devon and Plymouth and Torbay Primary Care Trust.

The secretary of state for health inherited legal responsibility for the claim as the original NHS commissioner no longer existed as a legal entity.

Veilstone was funded by the commissioners as an aftercare placement for Ben after he was discharged from Winterbourne View Hospital, where he also experienced abuse.

Court proceedings were issued for Ben and his mother in 2012.

The legal claim was stayed pending the outcome of three criminal trials against former staff members at Veilstone. Twelve workers were convicted of mistreating residents including Ben in 2017.

The settlement is legally significant because the final order issued by the high court declares that Ben’s rights under articles 3 (the right not to be subjected to torture or inhuman or degrading treatment or punishment) and 8 (the right to a family and private life) of the European Convention on Human Rights (ECHR) were breached as a result of his mistreatment at Veilstone, and that the article 8 rights of Ben’s mother Claire were also violated.

He was denied regular and private unmonitored communication with his family and his phone calls were listened to and recorded by staff

The breaches of Ben’s human rights included inhuman and degrading treatment contrary to article 3 of the ECHR:

  • A general standard of care at Veilstone that was wholly unacceptable and amounted to systematic neglect and cruelty. Ben was subjected to a regime of punishment and control. His toys and clothes were confiscated from him because they were not “age appropriate”. He had to complete chores and cleaning in the home before he was allowed trips out or phone calls with his family
  • False imprisonment in a quiet room – a small, locked room without natural light, a bed or a toilet. Records showed that Ben was sent to the quiet room on 117 occasions, sometimes overnight, and that he would sometimes wet himself and be left in his own urine. Ben would often cry out and scream and self-harm without staff intervening or releasing him from the room
  • Unnecessary and disproportionate use of physical restraint against Ben.

Violation of Ben’s right to a family life contrary to article 8 ECHR included how:

  • Staff pursued a policy of limiting and controlling Ben’s contact with his family, as part of Veilstone’s behaviour management regime
  • Ben’s family visits were inappropriately restricted, on occasion as a means of control and punishment. Ben’s family were not permitted to see him at all during his first month at Veilstone
  • He was denied regular and private unmonitored communication with his family. His phone calls were listened to and recorded by staff. Ben’s records show that he would repeatedly ask to see or speak to his family and that, at times, he would call out for his mother when he was in the quiet room.

Staff at Veilstone documented the abuse against Ben and his reactions to this in daily records.

His family raised concerns about the regime from an early stage. They contacted the commissioners about the closed culture, and that staff did not listen to family suggestions or concerns.

Ben’s sister wrote to his psychiatrist in June 2010 to explain that he would understand the limits on family visits as a punishment against him. She raised concerns that Ben was not allowed to communicate via Makaton (a communication tool) and that he was not being permitted to do activities he enjoyed such as dressing up.

Ben remained at Veilstone until October 2011, when he was removed on an emergency basis after a Care Quality Commission inspection revealed the quiet room and unlawful deprivation of liberty of residents at Veilstone.

Devon County Council office
Devon County Council, one of the commissioners, made a formal apology; the NHS commissioners no longer exist. Photo: Lewis Clarke

Long-term psychiatric harm

An expert psychologist instructed by Ben’s solicitors diagnosed him with post traumatic stress disorder as a result of the abuse he had suffered at Veilstone. The defendant commissioners accepted that Ben had been caused psychiatric harm and that he remained affected by the abuse to this day.

Claire and Ben have always been very close and were used to seeing each other regularly and speaking often. When Ben lived at Winterbourne View, he would see his mother around every two weeks, if not more frequently.

Claire’s right to a family and private life (article 8 of the ECHR) was breached when Ben lived at Veilstone.

Veilstone staff pursued a policy of controlling Ben’s contact with his mother by limiting the extent of their contact through restricting the content of their conversations by not permitting them to have private telephone conversations.

Claire was reprimanded by staff for behaving too “childishly” with Ben when she joked with him and had fun on family outings, or when staff listened to her phone calls with her son.

Her visits were often cancelled by staff at the last moment. At one point towards the end of Ben’s placement, Claire was not allowed to see or speak to Ben for 42 days, causing her huge distress.

She understands Ben was told during this period that she had died. She made a complaint to
the commissioners and contacted her MP.

When she was allowed to see Ben again, staff shadowed them during her visit. The violation of Claire’s right to a family life had a profound impact upon her and her relationship with Ben.

Claire was not allowed to see or speak to Ben for 42 days, causing her huge distress. She understands Ben was told during this period that she had died

She had to endure the very difficult process of sitting through all the criminal trials relating to abuse at Veilstone, listening to extensive evidence about the systemic abuse of vulnerable adults, including her son.

Claire remains affected by her traumatic memories of her own mistreatment by Veilstone staff while also supporting Ben to live with the effects of the abuse he suffered there.

The court-approved settlement for Ben included formal declarations that the defendant commissioners acted unlawfully because Ben and Claire’s human rights had been violated, and ordered compensation to be paid to Ben and Claire (a confidential amount).

The defendants also agreed to make formal apologies to Ben and his family.

Ben and Claire were represented by Catriona Rubens and Alison Millar of Leigh Day solicitors and Jeremy Hyam KC of 1 Crown Office Row Chambers

Blog post on case by Leigh Day

Google Streetview image of location
Gate to Veilstone: staff were convicted of mistreating residents in 2017. Photo: Google

Photos: Lewis Clarke/geograph.org.uk/CC BY-SA 2.0 Deed; Google Maps; Almanta/Wikimedia Commons/CC BY-SA 4.0 Deed

Mary O’Hara: the often overlooked population within our prisons

Mary O'Hara 

Mary O'Hara

— Spring 2024

Nearly one in three prisoners has a learning disability and jail is particularly tough for them. Despite a high staff turnover and tight finances, a shift is occurring in recognising their needs

Silhouette of man in prison cell

The UK’s prison estate, while under enormous strain like other state institutions, is too often ignored – as is the fact that an estimated one-third of those in them have a learning disability.

No comprehensive statistics are available but Ministry of Justice figures in the year to March 2023 showed that nearly three in 10 prisoners (28%) were identified as having a learning disability or difficulty (such as dyslexia).

Figures are similar in the US, where around a quarter to a third of prisoners are estimated to have a learning disability.

Societal barriers are amplified across the criminal justice system. But, as charities and campaigners have repeatedly pointed out, the crisis within the prison estate presents singular challenges for a population requiring specific adjustments or interventions.

System in survival mode

The latest Bromley Briefings Prison Factfile from the Prison Reform Trust describes a justice system “trapped in survival mode”, much of this a result of austerity funding cuts.

Its latest annual briefing shows the number of people held in Scottish, English and Welsh prisons standing at almost 88,000 – 75% higher than 30 years ago and predicted to rise further.

Britain has the highest rate of incarceration in western Europe, as even the New York Times has noted. It is already at capacity, with conditions for prisoners and staff alike often unsafe.

Research shows that, for prisoners with learning disabilities or difficulties, prisons are especially unsafe. These inmates are five times more likely to be subject to control and restraint than other prisoners and three times as likely to report having spent time in segregation.

Against this backdrop, any deterioration in the prison system or depletion of resources is likely to disproportionately affect those requiring additional support.

Numerous reports from HM Inspectorate of Prisons and others have catalogued pressures such as serious overcrowding, grim living conditions and high levels of violence and self-harm as well as concerns over time spent in isolation.

In 2023, chief inspector of prisons Charlie Taylor issued five urgent notifications, which directly alert the lord chancellor and secretary of state for justice of significant concerns – the highest number in a single year.

Recruitment and retention problems appear intractable. High turnover and fewer experienced staff combine to exacerbate existing issues; there aren’t enough longstanding prison employees with the institutional knowledge and experience to guarantee the population is managed safely.

These inmates are five times more likely to be restrained than other prisoners and three times as likely to spend time in segregation

Despite some government efforts on recruitment, the reality, as the Prison Reform Trust concludes, is that “staff leave the service in droves. Quickly burnt out by the conditions they face each day.”

Those who remain report not having received training to better manage learning disabled inmates’ needs and requirements.

Time, support and staffing

Jon Collins, chief executive of the Prisoners’ Educational Trust, told me that the staff ratios are crucial because personalisation “takes time and support”.

He adds that while there are admirable efforts in prisons and in external organisations to improve the system (for example literacy projects), staff churn means opportunities to foster long-term initiatives can be missed.

Nonetheless, there has been a shift in both approach and policy action in the UK the justice system. For example, liaison and diversion services (while imperfect) identify people with vulnerabilities as soon as possible after they come into the criminal justice system, and refer them to specialist services.

Collins points to examples where a degree of progress has been made. Neurodiversity support managers have been introduced in prisons and, from 2025, there will be a new screening tool to better identify people with particular needs.

There is no denying the scale of the problems but, as Collins says, the fact that some headway has been made “shows it can be done”.

A show for all senses

Community Living

Lucy Garland and Amber Onat Gregory

— Spring 2024

A theatre company takes multi-sensory shows on the road for audiences with profound disabilities. It’s a lot of fun and influences mainstream arts, say Lucy Garland and Amber Onat Gregory

Audience with lights at show

A decade ago, Frozen Light began creating original, multi-sensory theatre shows for audiences with profound and multiple learning disabilities (PMLD).

In 2016, it was the first company to take a show for such audiences to the Edinburgh Fringe and has toured to 70 theatres and arts venues across the UK since 2023.

Here are 10 things the Norwich-based company has learnt in 10 years.

Everything is an offer

Our shows are an offer of a theatre experience. Audiences can engage how they choose.

We aim for this to be a good time, and we work with an audience who often have so little opportunity to exert control on their lives. By creating an offer and respecting a “no”, we allow people to curate the experience they want to have.

Audience demand outweighs what we can provide

There is huge demand for sensory theatre, especially for adults. We are the only company making work specifically for adults and touring it to venues. We want to encourage more people to think about making sensory theatre for this audience – it really is a lot of fun.

Joy is a tool for activism

When we started, we didn’t realise we would also become advocates and activists. But society is still so ignorant of the needs of this group and we have found ourselves in this position. We are able to fight for access with passion and joy.

Listen with all your senses: it’s a gift

Our audiences – people who communicate in a non-linguistic way – have taught us to listen with all our senses. If you open yourself up to communicate with someone whose communication method is different from your own, you can learn more about what it means to be human.

Listen to your audiences

Everything we do is guided by the voices of our audiences; we learn from their responses and take this into our next work. Our audiences are our best teachers – all we have to do is listen.

Think outside the box

Our theatre has been called a full 3D experience. For one show, when we were in the year 2065 in a dystopian future, we spent time inventing sensory props to represent futuristic devices. That was when a light-up, vibrating, squidgy tube box was born – a surveillance device.

Time, time and more time

Time is crucial when working with this audience. Time to listen to each other, time to ask “what do you need from me?”, time to process what is happening, time to explore.

We have a project called the Sensory Studio where we collaborate with four artists with PMLD. This is a deliberately slow-moving project that allows us to learn from our artists and feed this directly into our productions.

Use your platform to amplify others’ voices

We can use our platform to amplify the voices of our audiences, to advocate for them in the theatre and arts sector and to push for more and better arts provision.

During the pandemic, we realised our audiences’ stories were not being told so we started a podcast to amplify these voices and share the realities of life during Covid.

Sensory theatre teaches us so much

It is much more than just an art form. It can teach us about how
to approach the world a little differently, with more lightness, connection and confetti.

Visibility is vital

Over our years of putting our work into theatres and arts and heritage venues, we have seen the change that welcoming people with PMLD can make. Some theatres have committed to staging more sensory theatre and some have invested in Changing Places toilets.

None of this would have happened if their staff had never met our audiences and seen the value they can add to their spaces.

Lucy Garland and Amber Onat Gregory are artistic directors and joint chief executive officers at Frozen Light

Review: Louche and luxurious

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Chris Hatton: calling learning disability an illness harms people

Chris Hatton 

Chris Hatton

— Spring 2024

As long as research and official guidelines view learning disability as a health condition, individuals’ distinctive health needs and often multiple disorders will be excluded from studies and clinical care

Pills in blister pack

Year after year, research has shown that people with learning disabilities are dying 15-20 years younger than others, with twice as many dying for reasons that could have been avoided.

Over the past 10 years, more research and health service attention has been drawn to people with several long-lasting health problems (such as diabetes) – in medical jargon, multimorbidity.

For most, long-term conditions tend to start in middle age, and having more than one of them can be a problem in all sorts of ways.

First, having one (for example, high blood pressure) can increase your chances of developing another (such as a stroke).

Second, the medications you need for different conditions might not work well if taken together.

Third, because specialist doctors focus on a particular condition, they don’t see the entire picture and help you work out what’s best for your health as a whole.

Finally, managing appointments and medications for many health conditions can be difficult, confusing and time-consuming.

A small but growing body of research has looked at multiple health conditions in people with learning disabilities, mainly using information from health records.

Adults with learning disabilities are far more likely to report two or more health conditions than others (41% versus 26% of people in one study in Scotland); they develop them around 20 years earlier.

Around 40%-50% of adults with learning disabilities are prescribed five or more medications, again starting at younger ages. Combinations of these drugs are of clinical significance: they commonly have to be avoided, their effects monitored and dosages adjusted.

There is a link between people with learning disabilities having more health conditions and dying earlier. Some conditions are more common among this group, such as epilepsy (16.6% compared to 0.6%).

Much more medication

In addition, some medications are much more likely to be prescribed for people with learning disabilities such as antipsychotics (14.4% compared with 0.9% of others).

Yet people with learning disabilities are invisible in both general medical research on multimorbidity and National Institute for Health and Care Excellence (NICE) guidelines on managing multiple conditions.

Why are they invisible?

Because they count learning disability itself as a long-term health condition.

This fundamental error – a learning disability is not remotely a health issue in itself – is deeply unhelpful.

Adults with learning disabilities are far more likely to report two or more health conditions than others and develop them around 20 years earlier

It points practitioners to see a learning disability as a health problem, with all the potential for discrimination that comes with that. And it makes people’s distinctive profile and health needs invisible too – learning disability is seen as one condition among many.

This doesn’t motivate health services to look out for and help people with learning disabilities with multiple health problems, or even (imagine!) think about the social and economic reasons why they are more likely to experience such issues at much earlier ages.

Instead, NICE and services are looking in the wrong places to find people with learning disabilities, focusing on older people, not thinking about the reasonable adjustments to offer personalised approach, nor about the combinations of health issues that are common among this group.

Anyone listening?

The latest NHS-funded Learning Disability Mortality Review (LeDeR) report, which came out in December, says helping people with learning disabilities with multiple health conditions is one of its most important issues for health services. Is anyone in the multimorbidity medical world listening?

The last word goes to Tim Sully, a member of the Involvement Matters Team at the East Sussex Learning Disability Partnership Board. He contributed to the the latest LeDeR report foreword, written by the Staying Alive and Well Group (a group of people with a learning disability based at Kingston University).He says: “It makes me angry knowing I will have to suffer, even if it is not necessary, because someone is not thinking clearly about me.”

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Veilstone case

Belinda Schwehr 

Belinda Schwehr

Readers may have seen that the High Court has recently approved a damages settlement declaring that the human rights of a man with learning disabilities, and those of his mother, were breached when he was living under a s117 aftercare package, at a care home called Veilstone, between May 2010 and October 2011 – that is, 13 years ago.

The man, who is called Ben, was so badly treated that it was alleged that it amounted to a breach of his Article 3 human right (torture, inhuman or degrading treatment) and the right under Article 8 (respect for family and private life). The general standard of care at Veilstone was wholly unacceptable and amounted to systemic neglect and cruelty.

Ben survived a regime of cruel and inhumane treatment at Veilstone, including excessive restraint, denial of family contact, and the repeated use of a “quiet room” against him, as punishment.  12 staff were eventually convicted of mistreating residents, including Ben at Bristol Crown Court (although one conviction had been overturned on appeal).

Ben lived under a regime of both punishment and unscrutinised control at Veilstone, as well as neglect with regard to insufficient food and water. His toys and clothes were confiscated from him because they were not regarded as “age appropriate’. He was made to complete chores and cleaning in the home before he was allowed trips out or phone calls with his family.

He was regularly (and sometimes overnight) sent to a small, locked room without natural light, a bed or toilet facilities – in which state of confinement, he would often scream and self-harm, without staff intervening or releasing him from the room.

One cannot be sure whether Ben lacked capacity, or was believed to have lost the presumption after proper assessment. It is not clear whether there was ever any DoLS paperwork put in in place in what was a care home, or whether the rest of the regime did amount to deprivation of liberty. However, even if there was, the means used to manage Ben was still so very disproportionate and inappropriate as to justify an assertion that it was a breach of Article 3 rights – which do not depend on a person’s incapacity.

We think that this form of management would never have withstood the scrutiny of the Court of Protection on a DoLS challenge. One can infer from the decision to settle the case that the commissioners at least acknowledged that the s5 cloak of legal protection could not be hoped to cover the situation in Ben’s case, with regard to presenting the measures uses as mere restriction, presumably because no thought process adequate for s6 purposes, on top of a belief in his incapacity, ever occurred.

We are not saying that deprivation of liberty cannot be lawful, of course – just that is has to be proportionate and necessary in relation to the harm to the person it is supposed to prevent, and that they must lack capacity. The allegation here was that there was unnecessary and disproportionate use of physical restraint against Ben, and a damages claim for false imprisonment.  He must have lacked capacity, we think, because ANY physical restraint against a person WITH capacity would amount to an assault in civil as well as criminal terms – unless it was always to stop him from harming someone else, which makes it justifiable at common law.

The Secretary of State for Health inherited legal responsibility for the claim as the original NHS commissioner no longer exists as a legal entity.   The claim under the Human Rights Act was brought against the local authority and NHS commissioners of Ben’s placement at Veilstone namely Devon County Council and the NHS Devon and Plymouth & Torbay Primary Care Trust.  The settlement although it came with an apology, means that there is no public holding to account of the public bodies concerned with regard to how it ever came about that they were commissioning a service that was this bad, and doing nothing about it. The commissioner’s letter said this: “In our ongoing role as commissioners, we are committed to learning lessons as a result of the abuse that occurred at Veilstone.”

Staff pursued a policy of limiting and controlling Ben’s contact with his family, as part of Veilstone’s behaviour management regime, supposedly.  The mother and son were used to seeing each other regularly and speaking often. Claire’s visits were often cancelled by staff at the last moment. At one point, towards the end of Ben’s placement, Claire was not allowed to see or speak to Ben for 42 days, causing her huge distress. Visits were sometimes shadowed.  Ben was denied regular and private unmonitored communication with his family. His phone calls were listened to and recorded by staff.  Ben’s records show that he would repeatedly ask to see or speak to his family and that, at times, he would call out for his mum when he was in the quiet room.  The violation of the mother’s own right to respect for her family life affected her and her relationship with her son, to a significant extent.

Ben’s family contacted the commissioners and the psychiatrist about the closed culture at Veilstone, and were ignored.  That is to say, despite owing human rights compliance as part and parcel of being the commissioning public body, and despite being bound by positive obligations, it did nothing to get the matter to the Court of Protection itself.

A CQC inspection eventually revealed the quiet room and unlawful deprivation of liberty of residents at Veilstone and he was removed.

A psychologist diagnosed him with Post Traumatic Stress Disorder as a result of the abuse he suffered at Veilstone. The Defendant commissioners accepted that Ben had been caused psychiatric harm and that he remained affected by the abuse to this day.

The Court approved a settlement which included the payment of a confidential amount of compensation to Ben and Claire (reportedly £10K for Claire).

This outcome should be absorbed by relatives and supporters of people detained in psychiatric services who remain to be convinced that any good at all has come out of the Hollins thematic review of the conditions within such hospitals.

The remedies which exist, include the following:

  • Complaint to the commissioner (an NHS complaint or a council complaint if the issue is in a care home) – IMHAs can be used to take these forward if someone is still in hospital; and there is a right to one for an NHS complaint.
  • A Safeguarding referral to the local council in the area plus judicial review for failing to follow through on the findings
  • A regulatory referral to CQC  if the care home or hospital is primarily to blame, rather than the commissioner and in particular a referral to CQC regarding the Mental Health Units Use of Force Act;
  • Parliamentary Ombudsman/Joint team local government ombudsman complaint
  • Mediation with a systemic theory specialist
  • A discrimination claim using both the goods and services part of the Equality Act 2010 and the public sector equality duty in the County Court or High Court
  • A public law claim in the Administrative Court (with or without a damages claim for breach of human rights) for meeting needs with an inadequate and inappropriate standard of care planning or contract monitoring,
  • A personal injury action in the High Court for damages – and an application for permission under s139 MHA if the incident occurred in hospital
  • A corporate manslaughter prosecution, potentially.

In conclusion, whilst it can be seen that it is not the case that there NO remedies available in the legal system, it takes super-human reserves of resilience and courage to go the distance.

 

 

Saba Salman: People need real jobs and career prospects

Saba Salman 

Saba Salman

— Winter 2024

Most of us think of a fresh start as a new year begins, with some of us wondering what work or training-related opportunities are on the horizon.

Teresa

 

So Community Living’s latest coverage includes a focus on equality around employment, from minimum pay to access and inclusive recruitment and training.

Exploring people’s potential to work and highlighting the onus on employers to champion inclusion is in stark contrast to the government’s punitive approach in this area.

Controversial plans to force people into work, unveiled by the chancellor in the autumn statement, demonise disabled people as work shy.

Punishing those who fail to find jobs by withdrawing their benefits or forcing them into mandatory work experience is brutal. It also reinforces the scrounger narrative that self-advocates, campaigners and families have fought hard to shatter.

What we need, as Shaun Webster and Dominique Burley of voluntary sector partnership Forum Central argue, are real jobs for those who can and want to work, alongside cultural change in the workplace. This, as Webster and Burley write, would mean “people not only get into work but also move up the ladder once they have a job”.

And, as parent campaigner Becky Whinnerah says in our feature on the creation of an inclusive brewery: “It’s down to bias and prejudice that people end up being stuck at home. What a sad waste, and what a complete joy it would be to all of us if people took part in their communities.”

Full participation in communities is what this magazine has always advocated, and we know this can be made possible when support is tailored to individual need and led by the views of those with lived experience.

For those of you reading our first articles of 2024 in our debut full-colour digital edition (thanks to our brilliant cover star Teresa Hartchild, pictured above, for the wonderful photos) do let us know what you think of our new look for a new year, as well as your thoughts on the issues we feature.

Saba Salman

Editor

Putting skills on show

Community Living

Shaun Webster and Dominique Burley

— Winter 2024

Employers often lack awareness of what people with learning disabilities can do. An event where they can demonstrate their abilities aims to change this, say Shaun Webster and Dominique Burley

Shaun Webster and Dominique Burley brainstorming ideas

A forthcoming reverse jobs fair, where job seekers with learning disabilities showcase what they can offer – instead of employers – aims to shift the balance of power in the employment market.

Forum Central, a membership body for the health and care third sector in Leeds, plans to hold the fair at a community venue this spring. Employers will have a chance to see the whole person, rather than just a CV.

We know from NHS figures that fewer than one in 20 learning disabled people is in paid work.

Employers usually ask for formal qualifications, which many people do not have. Traditional job interviews and job fairs are not usually accessible; our reverse version means employers can meet candidates who can explain their talents and skills. We hope to organise it so some employers may have applicants’ CVs beforehand.

The jobs fair will be held in an informal and relaxed community venue because a familiar, accessible place can bring out the best in people. It also removes the pressure of finding a new building, working out a transport route or spending time to find out if the building is accessible.

We hope some interviews may take place at the jobs fair.

Forum Central, established five years ago as a partnership between local mental health organisation Volition-Leeds and Leeds Older People’s Forum, has about 300 members.

The forum advocates within the health and care third sector, coordinating a network of 100 third sector learning disability organisations across the city, supporting members to improve services for this community. It also works on the wider determinants of health, such as employment.

The jobs fair is part of our work co-chairing Forum Central’s autism and learning disability employment task group. We bring together those with lived experience of disability and employers from different sectors (such as health or voluntary organisations) to improve employment opportunities and practice for these people.

We have around 70 people and organisations in the task group and meet four times a year with the aim of boosting job opportunities for people to get into and stay in work.

One focus is on how to support organisations to recruit more accessibly and help staff progress in careers beyond entry-level roles (see tips for employers, opposite).

Obstacles we have found among organisations include a lack of confidence in taking on disabled people. Not enough know about reasonable adjustments or what support is available for staff.

However, not all employers value people with learning disabilities. Some see employing them as a “nice” thing to do or as an act of charity. We want to raise awareness of people’s skills and challenge stereotypes.

Government action that could help get people into employment

There are several steps the government could take to help more people into work:

  • Better promotion of Access to Work
  • Enable people to apply for Access to Work locally and in person, rather than via the national helpline or the website
  • Support employers so they can make recruitment practices and workplaces more inclusive
  • Involve people with disabilities in auditing employers badged as disability confident; negative experiences have been reported in these organisations

Video CVs and easy read

Some of our members’ projects to make recruitment practices more accessible include work by the Leeds Autism and Learning Disability Digital Inclusion Network on a film to promote the use of video CVs. This helps anyone who might struggle with reading and writing or who finds it difficult to capture their skills in a traditional paper CV.

Video CV recruitment has been implemented at the local NHS learning disability service at St Mary’s Hospital, part of NHS Leeds and York Partnership Foundation Trust, as well as within Forum Central itself.

Another strand of our work involves lobbying MPs to make Access to Work more accessible. This is a government-funded scheme to help people get and stay in work.

Employment can be seen as a ‘nice’ thing to do or an act of charity. We want to raise awareness of people’s skills and challenge stereotypes

However, many people we know refer to Access to Work as “barrier to work” because there are long waiting times to have an assessment to work out what help you need in the workplace (such as a large print keyboard). Then, workers may have to wait a long time for equipment.

In addition, people cannot use their preferred communication method to contact Access to Work (see panel, opposite page).

We therefore worked with the Leeds Learning Disability People’s Parliament (a forum for and led by people with learning disabilities) to create an easy read letter, outlining the issues and solutions.

We plan to send this letter to MPs and ministers at the start of this year. We wanted to make an easy read version because, if we are asking for accessibility, we should be accessible too.

One reason more employers do not hire people with learning disabilities is a lack of confidence in accessible recruitment. Another barrier is not recognising that people have skills and talents to offer. There are stereotypes, such as disabled people not being able to live independently or work or, if they can work, being incapable of doing more than entry-level roles with simple tasks.

The biggest barrier for people with learning disabilities can be the benefits system. It can be hard to navigate and sometimes people are not always better off working because they do not work enough hours or at a high enough pay rate.

We enjoy using people’s lived experience to make change in the city.

Cultural change in the workplace is needed so people with learning disabilities can be in leadership roles. Attitudes need to shift as well so people not only get into work but also move up the ladder once they have a job.

Shaun Webster is project coordinator and Dominique Burley is senior development worker at Forum Central’s Learning Disability Network

Make recruitment more accessible: 10 tips for employers

  • Promote your event through local third sector organisations that are involved with disabled people who may want to work
  • Be open to video cvs instead of only written ones
  • Provide job descriptions and interview invitations in easy read formats
  • Offer transport information, such as bus or train timetables and on how long it takes to walk to your workplace from a bus or railway station; this will help people plan their journey
  • Check preferred communication methods; do not assume a letter or email is best as people may prefer to be invited to interview on the phone
  • Supply questions before the interview so people can prepare
  • Write questions in plain English and avoid jargon
  • Ask if candidates need reasonable adjustments to attend an interview
  • Speak in plain English in the interview, and explain any acronyms or technical terms
  • Consider replacing interviews that assess competency with a work trial

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Parental alienation and decisions

Belinda Schwehr 

Belinda Schwehr

— Winter 2024

Who was trying to control a woman in supported living – provider or parents? The focus should be on capacity to make decisions and best interests, said the court. Belinda Schwehr reports

Hands outstretched pushing viewer away

Parental alienation and a person’s capacity to make nuanced decisions were addressed recently in the court of protection.

The judgment focused on RK, a 30-year-old woman with Down syndrome, a moderate to severe learning disability and partial sight impairment.

RK had been assessed as having a learning disability and some communication difficulties. She was resident in supported living accommodation, Castle Hill, with services commissioned by a county council from Signia Family Support Services (not their real names).

She was described as a confident woman who could articulate her needs and wishes verbally, demonstrating a well developed vocabulary and comprehension. She appeared settled in Castle Hill, where she had lived for around eight years.

She benefited from activities run by Signia, although some had stopped, which the family believed was a result of pressure from the provider.

RK had an ambivalent relationship with her family, feeling empathy and love, but also anger because of perceived control issues.

Her opposition to family contact likely stemmed from past experiences, including lockdown restrictions, a police visit and disputes related to money, weight and concern about an intimate relationship.

RK fundamentally loved her family. However, she had been reluctant to see her parents since around late summer 2020. She expressed a desire to reconcile but was not confident it would be a positive experience.

Her vacillation in recent times over seeing her relatives did not necessarily indicate inappropriate pressure or a lack of capacity

Alongside questions of parental alienation and decision-making capacity, this case also considered the inherent jurisdiction. This was in case RK did have capacity with regard to her care and family contact but needed more time to consider matters to make fully informed decisions.

Undue influence

The inherent jurisdiction is a power the high court has to make orders and grant injunctions in certain circumstances. Such orders can be used to protect a person who does not lack mental capacity under the Mental Capacity Act but is vulnerable because their decision-making is impaired owing to abuse, undue influence or coercion.

The inherent jurisdiction should be applied only to adults whose decision-making capacity has been compromised by factors other than mental incapacity. The burden of proof falls on the applicant (in this case, the father) to demonstrate that the individual’s will has been overpowered by coercion, undue influence or other vitiating factors.

Before this hearing, the court had determined that RK lacked capacity for certain decisions (for example on litigation and financial or property matters) but she had capacity for others (such as over where she lived and support).

RK was represented by the official solicitor because there was no dispute that she lacked litigation capacity. The judge visited her accommodation, spending time with her to gain insight into her living conditions and situation.

RK’s family sought various declarations and orders regarding her capacity to make decisions about contact, protection from undue influence and her interest
in revoking a lasting power of attorney that she had already granted to a family member.

If she did not lack capacity in relation to these issues, they wanted an order under the inherent jurisdiction powers to ensure she had more space in which to make decisions of her own.

Capacity the main issue

Although RK’s family had been calling for an extensive fact-finding inquiry to get to the bottom of all the concerns, the judge emphasised the need to focus on her capacity and best interests decisions. He did not find it necessary to make findings about facts to determine what the court needed to decide.

The judgment began by stating that there was no clear jurisdiction for making any decisions about RK’s care going forward, either in the court of protection or under its inherent jurisdiction for adults who were merely vulnerable.

RK likely had the capacity to decide on her care provider. Given that she was so fed up with the proceedings, the judge said that changing provider at a care planning level would carry the risk that she was likely to reject the new provider and perceive her parents were behind this change.

The judgment concluded that the legal proceedings should end.

It acknowledged the negative impact of the litigation on RK’s relationships and emphasised the importance of family reconciliation. The judge suggested that initial contact between RK and her family should be via video calls and mentioned the potential involvement of a sibling’s new baby in the process.

Consultant psychiatrist Dr Claudia Camden-Smith assessed RK’s capacity and noted her inability to understand the pros and cons of contact with others.

Consultant clinical psychologist Dr Katherine McKay, however, concluded that RK retained the presumption of capacity in this regard. She understood the issues, could use and weigh relevant information, retain information and communicate her views. Her vacillation in recent times over seeing her relatives did not necessarily indicate inappropriate pressure or a lack of capacity in the expert’s view.

The judge agreed with McKay.

RK’s social worker observed that a meeting with the parents had been very distressing for all concerned and it was regrettable that RK’s parents approached the meeting by seeking to interrogate her and defend themselves.

Being interviewed repeatedly on the same issues left her feeling that her views, experiences and, importantly, her own decisions had been disregarded

At the end of the meeting, the RK’s mother gently hugged her and said, “I suppose we won’t be seeing you again,” and her father placed his arm around her back and said, “Have a nice life” – comments they regretted by the time of the hearing.

To his credit, RK’s social worker made this observation: “This independent spirit… has been continuously undermined and undervalued time and time again.

“R has been assessed, questioned and interviewed repeatedly over the same issues which have left her feeling that her words and feelings count for little – that her views have been ignored or diminished, her experiences, her feelings and, more importantly, her own decisions disregarded.”

Case: RK, Re (Capacity; Contact; Inherent Jurisdiction) [2023] EWCOP 37

Comment: a lesson for parents in when not to go to court

Young people who need adult social care cannot afford to pay professionals to get to the bottom of intense yet nuanced incidents in the day-to-day relationships between themselves, their relatives, their provider, the provider’s staff as well as statutory care planners and safeguarding staff. They need to bring judicial review proceedings, very often, but one is means tested for legal aid for that form of remedy. The official solicitor’s resources are focused instead on litigation in the court of protection where legal aid flows more freely.

The court of protection route has become an industry in itself, and formalises the perpetuation of often torrid relationships.

One wonders at what point in the case discussed here the parties stopped talking to each other and forgot about the Care Act. It is not even mentioned in the judgment other than as the context for the involvement of a Care Act advocate and the council as care commissioner.

These cases arise because of an almost complete ignorance of the principles underlying the Mental Capacity Act on the part of both professionals and parents.

For instance, NHS staff often assume next of kin have rights regarding welfare matters. Parents often seek advice from us at CASCAIDr without even looking at the Mental Capacity Act code of practice.

This must stop. This case provides a lesson to parents as to when not to use the courts, particularly the court of protection. This applies even when they are well intentioned, concerned and acting in good faith, as the parents here were.

In brief

Saba Salman 

Saba Salman

— Winter 2024

Benefit rules to tighten, care staff don’t stay and a railway win. Saba Salman reports

Holding close: Flora and Dorcas

No action on long-term mental health detention

Campaigners have been voicing frustration at the government’s refusal to embrace measures to help free people from inpatient units.

A 2019 promise to modernise the Mental Health Act 1983 was ditched by exclusion from November’s King’s Speech.

Changes would have meant fewer people with a learning disability and/or autism would be held in mental health units. They can be detained despite having no mental health issues.

The government also declined to adopt recommendations in a report by Baroness Sheila Hollins.

She chaired the panel that examined independent care (education) and treatment reviews for people with a learning disability or autism
in inpatient settings, which called for limits on
long-term segregation.

Campaign group Rightful Lives said this gave “permission” for segregation to continue, which is “unfathomable when we know that care in the community is so much more cost effective and rights respecting”.

Laughing Boy play on stage from spring

A play based on the Justice for LB campaign will be performed this year.

Laughing Boy, based on activist and academic Sara Ryan’s book Justice for Laughing Boy, will be directed by campaigner, writer and occasional Community Living contributor Stephen Unwin.

The play, at London’s Jermyn Street Theatre in April then the Theatre Royal Bath, tells the story of Ryan’s son Connor Sparrowhawk, known as Laughing Boy.

After his preventable death in NHS care, his family’s demands for answers lead to an extraordinary campaign, uncovering “neglect and indifference that goes beyond Connor’s death to thousands of others”, as the play is described by Jermyn Street Theatre.

Unwin said: “I couldn’t be happier to be putting Connor Sparrowhawk centre stage, where he belongs.”

Medieval to modern integration

Community Living writer Simon Jarrett’s latest book is due to be published by Liverpool University Press in March.

In the book, A History of Disability in England: from the Medieval Period to the Present Day, he looks at the integrated lives of the medieval and early modern periods as well as the institutions of the 19th and 20th centuries.

Portrait exhibition celebrates relationships

Diverse families and friendships have been celebrated in a portrait exhibition (pictured above), with the aim of challenging the marginalisation experienced by those with additional needs.

The Living With exhibition from north London charity WAVE for Change (We’re All Valued Equally) displayed a range of specially commissioned images by photographer Kristina Varaksina at Alexandra Palace’s Creativity Pavilion in the autumn.

Varaksina’s photographs, like the one on this page of Flora and Dorcas, featured children and siblings from WAVE’s Challenge Group, in which parents provide peer support.

WAVE wants to raise awareness of the importance of creating more inclusive communities and mixed-ability places where everyone is valued equally.

The exhibition was funded by an award from Postcode Society Trust (a grant-giving charity funded entirely by players of People’s Postcode Lottery) and support from Alexandra Palace and the Peter Bailey Company.

News briefs

Four in 10 deaths avoidable

More than four in 10 (42%) deaths of people with learning disabilities in 2022 could have been prevented. This was slightly below the previous year’s figure of 49%, according to the latest NHS-funded Learning Disability Mortality Review (LeDeR) findings.

Cooking in the Commons

Six people with learning disabilities have won a 14-week House of Commons job placement through WorkFit, the Down’s Syndrome Association’s employment scheme. The plan is for the recruits, who are in catering positions, to gain permanent work after 14 weeks. Each has a WorkFit buddy. Commons Speaker Sir Lindsay Hoyle welcomed the recruits at a Disability History Month event in November.

Extra cost of autistic child

Raising a child who is on the autism spectrum costs families more than £215 extra a month on everyday essentials to meet their children’s needs. The study, by Dr Chloe Blackwell at the Centre for Research in Social Policy at Loughborough University, was published by disability charity Family Fund.

One million do care course

A million people have completed the first part of the Oliver McGowan Mandatory Training on Learning Disability and Autism, which enables health and care staff to provide better support. The second part of the scheme involves training given by learning disabled and/or autistic people. Oliver died after being given antipsychotic medication despite warnings it was unsuitable, and his mother Paula campaigned for the mandatory training.

What’s on our radar

Controversial plans to force disabled benefit claimants into work have met with outrage.

Claimants who do not engage with jobcentres to find work or fail to secure a job will have to take part in mandatory work experience or lose their benefits.

The measures, to come into force in 2025, were announced in the autumn statement. The aim is to get 200,000 more people into work.

“More people should be supported into work but we worry about government plans to force those who cannot work to look for jobs,” said Shaun Webster and Dominique Burley of Forum Central’s Learning Disability Network

“The plans assume someone can work from home, but challenges around this include access to digital technology and digital skills.”

Victoria Atkins, former financial secretary to the Treasury, became the fourth secretary of state for health and social care in two years. The department was again overlooked for funding, this time in the King’s Speech in November.

The social care workforce was described as a “leaky bucket” in the annual report from Skills for Care, the workforce development body for the sector. Almost 400,000 people left their roles in the year to March 2023, according to the organisation. The turnover rate was recorded at 28.3%.

There was, however, much-needed positive news when campaigners won their fight against rail industry plans to close most ticket offices in England. Widespread relief came when the government forced rail operators into a U-turn following huge criticism that proposals would make transport less accessible.