Community Living

The arch humanitarian

26 October 201920 June 2023 — Autumn 2019

Jean Vanier, who died this year, founded the L’Arche community movement in the 1960s –

one of the earliest efforts to overcome institutionalisation – and was a profound thinker on

disability and the human condition. Simon Duffy reflects on his influence and legacy

Jean Vanier: ‘There is a revolution going on. At the heart of this revolution are not the powerful, the wealthy or the intelligent. It is people with disabilities who are showing us what is important’

The first time I heard Jean Vanier was in 2015 in an upstairs room in the UK parliament.

The talk was Living Together for the Common Good: Why do the Strong Need the Weak? Vanier’s starting point was not ‘What makes us strong?’ but ‘What makes us human?’

He reflected on the enlightenment idea of humanity, with its ideal of the rational, competent and goal-achieving human, which is central to modern thinking about the self.

He observed how self-defeating this ideal can become; the more individuals advance, the more they must leave others behind. We think we are building but, all the time, we are simply destroying.

Instead, for Vanier, we must begin with acceptance and love. He drew on the words of St Paul: ‘Love is patient, love is kind. It does not boast, it is not proud. It does not dishonour others, it is not self-seeking.’

For me, one of the most memorable points of the evening was when Vanier pointed out that what comes first is patience. The modern view of love so often slips into that dangerous enlightenment mode where all the focus is on what we do in the name of love. Love becomes another badge that we award ourselves. We strive to do, to change and to improve – yet so often we fail to just be with, meet and accept each other.

Movingly, Vanier told the story of a male prostitute in Australia who, dying in the arms of a member of L’Arche, said: ‘You’ve always wanted to change me – but you’ve never met me.’

In the process of fixing others, we lose sight of our very humanity – our essential fragility and our need for love, belonging and contribution. Humanism becomes inhuman.

Wonderfully different, fully human

This reminded me of my first experience of people with learning disabilities, in an institution in the south of England.

The buildings and the behaviour of the staff struck me with horror; the most important experience for me was that it showed a different way of being human.

I was a highly competitive young man, with some modest academic abilities and a raging desire to work, achieve and win.

Yet here were people who had been taken out of that rat race but were still fully human. Here was goodness, calmness, dignity, care, curiosity, play, challenge, suffering and fear. Here were people who were certainly different but wonderfully so.

For me, this experience challenged my notion of who I was and the purpose of my life. Paradoxically, it also turned into a mission which, for better or worse, has driven most of my decisions over the last 30 years.

So I worked to help people leave institutions, take control of their lives, make friends and contribute to communities – to become full citizens.

It became a project and, in the light of Vanier’s critique, I can see that a project like that is also full of dangers. It can lead one into feelings of self-importance and it can tempt one to see others as the means by which your goals can be achieved – even if those goals seem noble.

Vanier’s approach was different. As he put it, the mission of L’Arche is less about what it achieves (although it achieves a lot) and more about the message that is inherent in its way of being – that we must meet together as fellow humans. In the meeting of the strong and the weak, each is transformed. The weak may be supported, but the strong also get the chance to find out what really matters and who they really are.

Vanier once wrote: ‘I must say that for myself it has been a transformation to be in L’Arche. When I founded L’Arche, it was to ‘be good’ and to ‘do good’ to people with disabilities. I had no idea how these people were going to do good to me. The people we are healing are in fact healing us, even if they do not realise it’ (Vanier, 2004).

In fact, nobody is really weak or strong. The desire to be among the strong and to avoid the weak is a symptom of society’s failure to welcome all and to comprehend the true value of each individual.

It is important to note that Vanier is not attacking the government, the powerful, professional experts or policymakers. He is not saying they are wrong, stupid or evil. Instead, he is acting out the very issue he wants people to understand: we must meet each other; we do not need to use each other. The world is not a puzzle to be solved. We must live and act with integrity and love. We cannot hope to be the answer to every question. We must be true to our own gifts and find the role that is right for us.

New revolution

The second time I listened to Vanier, he began his speech with this rallying cry: ‘There is a revolution going on. We are beginning to realise that everyone, every human being, is important. We are beginning to see that every human being is beautiful.

‘At the heart of this revolution are not the powerful, the wealthy or the intelligent. It is people with disabilities who are showing us what is important – love, community and the freedom to be ourselves.’

The context was so interesting. He was receiving the Templeton Prize at St Martin in the Fields on Trafalgar Square. This tiny, frail individual was standing among the powerful with a twinkle in his eye and a smile on his lips and overturning the most important value system upon which their power rests – not power, not even money but their faith in their own superiority.

Vanier captured exactly the fundamental flaw in the thinking and behaviour of the powerful; they behave as if the point of life is to climb higher and higher, to even clamber up upon the backs of the weak. But where are they going? What will they find when they get there?

I think that Vanier’s challenge to the powerful is right. However, I also feel that the weak cannot afford to wait for the strong to wake up to their true needs. Mental handicap ‘hospitals’, like the one I visited and which, as Vanier rightly said, ‘crush disabled people’, had to be closed.

The reason they were closed was because families, people with disabilities and their allies came together to work and to lobby to bring about their closure. It did not happen by accident or because some politician suddenly woke up to their injustice.

“I founded L’Arche to ‘do good’ to people with disabilities. I had no idea how they were going to do good to me“

We do need to organise and to join the political process. Unless people with disabilities and families are present in that process – just as they should be present at every other level of community life – they will not be able to defend their rights or interests. The presence of people with learning disabilities within the political process may even bring some honesty and humility to that strange world.

Real, mucky community

What might Vanier’s revolution look like for the welfare state as a whole?

As he says, we need community, but real community is mucky, a little bit crazy and often quite annoying. But it is only community that can create the beauty, truth and the love we all need.

We must reconsider many common assumptions about how best to organise society and the welfare state. Many practical and social changes are needed:

Basic income We will need to secure everyone’s income without relying on enforced labour, stigma and shame. We need to recognise the many different contributions people can make to community life, not force everything through the sausage machine of paid employment.

Inclusive education Why do we teach our children that life is all about fitting into some tightly defined hierarchy of meritocratic values? Surely, every child must be supported to discover their own gifts and find their own path in life.

Independent living Everyone belongs and everyone can have a life of meaning and contribution. Needing extra support should not be a barrier to this. The social care system must be redesigned to enable people to control their own lives and their own support.

Inclusive communities We must not force people out of communities because their income is too low, their skin colour is wrong or they have extra needs. Communities must welcome difference and offer people homes and places, real and virtual, where people can meet, discuss and create together.

Constitutional reform Ultimately, we need to live in democracies that enable power to be decentralised and enable citizens and communities to take greater responsibility for shaping their destinies, within a framework of human rights.

Social problems today reflect the challenges Vanier describes. Justice does not mean establishing some neutral set of rules and rights that enable individuals to just get on with their lives. It means far more – living together, valuing each other and creating a better world together.

Simon Duffy is director of the Centre for Welfare Reform: www.centreforwelfare reform.org

References

Vanier Jean (2004) Drawn into the Mystery of Jesus through the Gospel of St John. Mahwah, New Jersey: Paulist Press

Further information

Jean Vanier official site: www.jean-vanier.org/en

Jean Vanier 1928-2019. www.larche.org/web/jeanvanier/home

Shared lives in L’Arche communities

Jean Vanier (1928 -2009) founded L’Arche, an international federation of communities for people with learning disabilities and those who assist them.

The first L’Arche community began in 1964 when Jean Vanier welcomed two men with learning disabilities into his home in France
Today, there are 147 communities in 35 countries on five continents
In L’Arche communities, people share their lives together and build a society
L’Arche philosophy is rooted in Christianity, but communities are open to people of all faiths and none

More stories about: Achievement Autism Service models

A gymnastic gold rush

Seán Kelly

26 October 201920 June 2023 — Autumn 2019

Greg Silvester’s gymnastic talents were spotted in a play group, and he went on to became an Olympian and a Special Olympics Great Britain director. He talks to Seán Kelly.

Just after Greg Silvester was born, his parents Jackie and Peter had a visit from some friends. They looked at the new baby in the hospital incubator and declared that he wriggled so much he was sure to grow up to be a gymnast.

Jackie and Peter already knew that this was an unlikely outcome for a baby with Down syndrome. But, as Silvester now says, with remarkable understatement: ‘I was lucky. I did become a gymnast.’ He has won gold medals at the Special Olympics and become a coach, among other achievements.

Jackie tells Community Living she used to run a Mencap play scheme with a man called Alastair West. One day, he asked her: ‘Would your son like to do gymnastics?’ to which she replied: ‘I don’t know – ask him.’

Silvester said yes, thinking it would just be a bit of fun, but it did not take long for it to become clear that he had genuine ability, and West became his first coach.

In 1989, Silvester took part in his first Special Olympics Summer Games, where he won a bronze medal in gymnastics.

Then, in 1991, he took part in an international gymnastics and swimming competition in his home town of Wolverhampton, where he was spotted by a British Gymnastics coach. The coach arranged for Silvester to have extra coaching sessions twice a week in Wrenbury in Cheshire, nearly an hour’s drive away, where he was taken by his parents. He also continued with his coaching sessions in Wolverhampton. Things were getting serious.

Going for gold

Four years later came one of the high spots of his life. At the 1995 Special Olympics World Summer Games in Connecticut in the US, he won an amazing four gold medals, plus two silvers and a bronze.

‘I was on the rostrum with the medals. I felt really proud and I had a big smile on my face,’ he recalls.

He also became All Round World Gymnastics Champion. ‘Gymnastics was my main sport, but I have been in other sports besides that like athletics, swimming and table tennis,’ Silvester says.

Following this, he moved on to become a coach with British Gymnastics; he and his mother provided the training together. For the last 23 years, he has been a qualified mainstream gymnastics coach.

Currently, he is coaching eight people, one of them a 6-year-old boy with Down syndrome. Of two of his young athletes, he says: ‘They work extremely hard – they went to Athens in 2011. They came back with some medals so we were really proud of them.’

But it’s not all about medals. Silvester mentions a young man he worked with who just could not do a forward roll. ‘And then he actually mastered it and did it by himself. He had a big smile on his face. He said ‘Oh I couldn’t believe it’ and he got a big round of applause.’

Despite his successes, Silvester has occasionally met prejudice. ‘I have to be honest. I have Down syndrome. Sometimes people look at me thinking: ‘What’s wrong with him? Why does he look different?’ But I am no different to anybody else. Even though I might look different, all my feelings are exactly the same.

‘Sometimes other people can judge people with any sort of learning disability. I have been picked on and called different names under the sun. Which isn’t very nice, you know.’

He describes a distressing incident on a sports leadership course. ‘It was some lad being a bit cheeky and a bit cocky and he said ‘Oh look, here comes spakka’, which really hurt me. It really upset me inside.’

Silvester thinks one of the teachers spoke to the young man afterwards because the next day, having seen video of Silvester competing, he apologised. ‘He said to me: ‘Sorry, I didn’t realise you were famous.”

Silvester also experienced some unpleasant reactions while on tour with a display roadshow. One time, as he came out, he heard open laughter from some young men at the front. As he went into a series of press-ups, the laughter was swiftly silenced. He then went on to demonstrate ‘one-arm press-ups’ and ‘clap press-ups’. Afterwards, the men came up to him and shook his hand to show their respect.

Not what I expected

Jackie’s reaction on being told she had given birth to a baby with Down syndrome is one that many people will recognise: ‘I said what have I done to make him like that?’ She says her husband was devastated. The reality was completely unexpected.

‘To be honest, we have never looked back because he has enriched our lives completely. We’ve met so many people through Greg and we’ve made so many friends. At competitions, we always get together.

‘We’ve been really lucky with him because you never know, whichever baby you have, whether they have a disability or not, you don’t know what the future holds, do you? We went on to have two daughters as well, who have both been very, very supportive.’

Silvester now gives awareness talks to schools and colleges. He makes a point of saying that anyone with learning disabilities should have the chance to be part of their local sports activities.

He talks about the importance of building on a person’s ability rather than focusing on their disability. And he talks about his own life: ‘I’ve still got a learning disability but it doesn’t mean I can’t do things for myself, because I can. I live independently now – I’ve been living on my own for just over two years. It’s nice to get the message to people who are not educated or aware of any sort of learning disabilities.’

At one college, Silvester was due to give a talk to a class of students who were said to be somewhat unruly and disruptive. However, he soon had them rapt with attention. His father Peter, who was there, says: ‘You could have heard a pin drop.’

After the talk, Peter collected the feedback forms. ‘It was unbelievable. It brought tears to my eyes. The actual good reviews of Greg’s speech,’ he says. ‘That just shows – doesn’t it? – that he can inspire the younger ones.’

For the past nine years, Silvester has also had a day job. He works part time for Cadent, a gas supplier, doing administration in the office, and holds an NVQ 2 qualification. While he clearly enjoys the job, his heart remains in the world of sport.

Now, aged 42, his main sport is table tennis and he has a competition soon.

Hall of fame

One source of satisfaction is the way that his achievements have been recognised. He was inducted into Wolverhampton’s hall of fame, which celebrates local sporting heroes.

He was also chosen to carry the Olympic torch in Auckland in New Zealand in 2000. In the same year, he was chosen as one of the 12 People of the Year by RADAR (the Royal Association for Disability and Rehabilitation, now known as Disability Rights UK).

Silvester has taken part in many displays including one in Malta for 250 people with the country’s president and prime minister present. He was also presented to Princess Diana when she had just become a mother. Someone whispered to him to ask how her new baby was. Silvester says that, luckily, he remembered the name and asked: ‘How’s William?’ ‘She was brilliant!’ he says, adding how sad he was to hear the news when she died.

One of the barriers to sports that Silvester and his family have experienced is a lack of funding. The Special Olympics depend on individual, trust and corporate donations, and receive no government funding.

The family are often involved with fundraising to help cover the costs of attending games around the world and they receive a lot of support from friends. Two of these friends are also planning to write about him. ‘They are doing a book on me. About my life. What I am like and how I have come from a young baby to an adult,’ he says.

Taking to another stage

In March this year, Silvester went out to the Special Olympics Summer Games in Abu Dhabi as a director on the board of Special Olympics Great Britain – ‘a nice experience,’ he says. He was proud to be representing the organisations.

He has been involved for many years in drama groups and is now writing a play. He has a dream of one day being a TV presenter: ‘I could do a sports programme or a documentary for people with any sort of learning disability.’

I first saw Silvester speaking on TV as part of a documentary about Eunice Kennedy Shriver, the founder of the Special Olympics movement, and he was a natural on the small screen. So, any TV executives who are reading: you know what to do.

It is clear that Greg Silvester has had an amazing life with remarkable achievements. Despite his sporting talents, life has not always been easy. But he says: ‘Up to now things have changed completely and I have got a great job, a great family and a great life ahead of me.’

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

More stories about: Achievement Downs Syndrome Employment People's stories

Keeping it punk into the night

Paul Richards

26 October 201920 June 2023 — Autumn 2019

Hearing “drink up, it’s time to go home” propelled sweary punk band Heavy Load into fighting for the right for people with learning disabilities to stay up late, says Paul Richards.

Maybe like most social movements, it all started over a pint in a pub. I was the bass player in punk band Heavy Load with four other musicians, three of whom had learning disabilities.

Our sound was probably an acquired taste. We were loud, chaotic and very sweary. We often had no idea what was going to happen next in our performances, which made life really exciting for us and for our fans.

When we formed in 1997, there weren’t many bands around at the time doing what we did – and it is fair to say none were doing quite what we did.

This attracted the attention of documentary film director Jerry Rothwell, who made a movie about our peculiar world.

Before filming started, we had already made a reputation for ourselves playing all over the UK at disability arts events – where the same thing would happen. At 9pm, just before we got on stage, half the audience would leave

We never for one moment thought it was anything to do with the energy burst and torrent of swearing that we were about to unleash. No; we assumed that there must have been a fundamental flaw in the way support staff shifts had been planned, which meant they were not flexible enough to allow people to see the end of a gig or club night.

We knew we had to do something about it.

Going mainstream

Back to the pint at the start of this article. We had been invited to support another band at a local pub.

The place was rammed and we just went for it. The scene that unravelled was like something out of a movie. As we unleashed our thrash punk version of Batman, most people seemed to have their mouths hanging open – we were not pub rock and this was not what they were expecting.

However, Simon Barker, our charismatic frontman, soon won them over and, by the end of the set, he had everyone singing along and clapping. It was just incredible.

Afterwards, we had a post-gig pint to round the evening off.

This had been a massive deal for us. It was the first time we had played to a non disability arts audience and we had been quite nervous. But we stormed it and they loved us. We deserved a drink and to bask in the moment.

Michael White (our drummer) was only halfway though his pint when his support worker came over and uttered the immortal words: ‘Drink up, Michael. It’s time to go home.’ Those few words changed everything.

They took the shine off the evening but also provoked us into saying ‘Enough is enough – we have to do something about this’ and the Stay Up Late campaign was born.

The birth of the campaign is one of the stories featured in the Heavy Load film, and that was the springboard for us to do all sorts of things we had never dreamt of being possible: albums, New York, Berlin, two Glastonbury festivals, writing the theme tune for Channel 4 drama series Cast Offs and going on a road trip to play at a squat in Copenhagen. Our final gig was in Trafalgar Square in 2012 as part of the Paralympics.

Despite all these achievements, the single most important thing I think we did was starting the Stay Up Late campaign, which became a charity to continue the work we had started.

It enabled us to put in simple language a profound point about people with learning disabilities being robbed of a basic human right – the right to party.

Of course, we do not actually care what time people go to bed as long as they get to make that decision. My belief is that if people can make decisions about their social lives, then an awful lot of other things will just fall in to place because they will be living in a culture that supports them properly.

A friend to go to gigs with

The week after we played our final gig was the week I found we had been successful in getting funding to start up Gig Buddies in Brighton and Hove. One door closes and another opens.

The idea behind Gig Buddies was to create a befriending scheme where people with learning disabilities were matched with a volunteer who shared musical interests. This would enable them to foster an ongoing friendship and widen their informal support networks.

As a band, we had played at loads of club nights for people with learning disabilities and a lot of these nights are great and well run. They are brilliant places for people to meet their friends, dance, DJ and perform.

However, I believe we should be offering people with learning disabilities even more opportunities. These would include being able to choose the sort of music they want to see, to stay beyond 9.30pm (10pm if they’re lucky) and to hang out with other people who identify with whatever scene it is that they are in to. Otherwise, learning disability club nights and events can become a form of well-meant segregation.

The fundamental elements of Gig Buddies are:

People with learning disabilities lead on making choices about how they lead their lives

Being part of community life

Enjoying mainstream culture and our notion that all events can be for people with learning disabilities

And – perhaps most importantly – having people in your life who are not paid to be there.

When we started Gig Buddies, I had looked into the obstacles people with learning disabilities were facing to getting out but I had not thoroughly researched if there were similar projects around the UK. I assumed there would be and was shocked to find that we had come up with something unique.

This led to innovation charity Nesta recognising us as one of their New Radicals which in turn led to other organisations wanting to replicate our work. The first of these partners was in Sydney and the next in Edinburgh and we now have partners across the UK and others seeking to work with us.

We now support more than 100 pairs of buddies across Sussex and, because of partnerships elsewhere, we have enabled many hundreds of people with learning disabilities to become part of Gig Buddies, something way beyond what we could do ourselves as a small charity.

Punks defy ‘drink up’

Our other main work is to continue our campaigning, embracing that original moment of defiance and activism prompted by Michael White being told to drink up and being true to our roots as punks. I do not think his support worker was a bad person but was working in a poor culture that had institutionalised their way of thinking and working.

In March 2019, we decided to hold our first (un)Ordinary Conference in London. All of the speakers were people with learning disabilities and/or autism and the majority of the audience were people who worked in social care.

The speakers talked about three main issues – jobs, relationships and community – and included people we knew had positive stories to tell about these topics. They had great support and were living what you might call an ordinary life.

The response to the conference was phenomenal and the prevailing question was: ‘Why aren’t there more events like this?’ It’s a good question – there should be. We need a lot more opportunities for people with learning disabilities to tell their stories and share their dreams and for those of us working in the sector to actively listen and to act.

We also used the conference to launch our Manifesto for an Ordinary Life, which has eight themes that people with learning disabilities have consistently told us they want in their lives:

My right! Living where I choose

My right! Making my own friends

My right! #NoBedtimes

My right! Making my own decisions

My right! Loving and being loved

My right! Being valued for being me

My right! A paid job

My right! People who are happy to support me and who I have chosen to be in my life

I think it is weird that this looks so radical. Wouldn’t most people want these rights? As someone without a learning disability, I take a lot of them for granted. So the fight for the right to party is also a fight for some basic human rights.

Sociable activism

We have ambitious plans and have been assembling a network of Stay Up Late ambassadors, who are people with learning disabilities around the country we are supporting to be activists to make change.

An active group in Scotland is making all sorts of great things happen and we want to support more groups like this to start up.

We also want to hear from support staff who are making great things happen. We want to share positive stories of how great support is enabling people to lead the lives they truly want.

Finally – perhaps this is our most ambitious plan – we want to work with commissioners on how they can take a ‘no bedtimes’ approach. How can they make sure support providers uphold these basic human rights?

We are also seeking to run Gig Buddies in more parts of the country.

Do join us on our fight for the right to party and to end bedtimes for adults with learning disabilities.

www.stayuplate.org

www.gigbuddies.org.uk

Paul Richards is director of Stay Up Late. paul@stayuplate.org

More stories about: Campaign Human rights Inclusion Music Ordinary living

Ambition makes a global message

Community Living

26 October 201920 June 2023 — Autumn 2019

Helen Laverty, Francesca Goff and Harley Jolley went to the United Nations in Geneva to tell the world that people with disabilities have dreams, aspirations and right to work

The telephone call from Time2Shine went something like this. ‘Hi, Helen. What are you doing on 19 March and the next three days?’ ‘Nothing that can’t be moved. Why?’ ‘Fabulous. So will you come to Geneva with us and help us prepare our self-advocacy speeches to present to the United Nations?’ ‘Err Yes.’

Time2Shine is a groundbreaking approach to ensuring young people with a learning disability get real-life work experience and opportunities through a one-year programme run with Cornwall Accessible Activities Programme.

It is the brainchild of Angie Emrys-Jones and Sandy Lawrence, two warrior parents of exceptional children who I first met at a family-focused conference in Somerset. I was bowled over by their work in an often-overlooked part of the country.

Helen Laverty

Telling the world

We are Shiner fellows – people who have completed the Time2Shine programme. You might have met us at Positive Choices in Hull and/or Dublin. Francesca is 17 and Harley is 19; we both live with our parents in Cornwall and go part time to a local college.

We both have big dreams; Francesca would like to teach dance and loves being part of Pick’n’Mix dance troupe. Harley wants to work for the police force.

In March 2019, we travelled to Geneva with Angie Emrys-Jones from Time2Shine and Helen Laverty from Positive Choices and our mums. Ted Emrys-Jones, Angie’s son, came with us and kept us very entertained. We were going to address the United Nations Committee on the Rights of Persons with Disabilities in the Palais des Nations for World Down Syndrome Day.

Down Syndrome International invited us to go, along with young people from France, Germany, Indonesia, New Zealand, Northern Ireland, Poland, Spain and Switzerland. We did wonder how we would all manage with the languages, but it was fine. Everyone was well supported and, after being shy at first, we all worked together.

We flew to Geneva from Bristol and caught the shuttle bus to our hotel. We were all very excited that first night.

The next day, we got up early as we had to get to the Ecumenical Centre in Geneva, which involved two buses and a walk. We spent the day together, becoming confident in what we wanted to say to the UN and making friends. It was amazing to meet model Katie Grant, who has Down syndrome – she is so pretty and really lovely.

Then it was time to go back to the hotel. We had a bit of a party that night to celebrate how far we had come and what we were going to show the world.

The next morning, we made our way to the UN. Our nerves kicked in then but, when we met up with everyone else, we soon settled.

Then we were off. What we said was live streamed around the world and lots of people kept tweeting us. Our theme was ‘Leave no one behind in the world of work’ – and we think we did a good job.

Francesca Goff and Harley Jolley

A multilingual message

As a seasoned academic, I find most venues and audiences, while approached with a little frisson of ‘here we go’, don’t faze me.

However, entering the venue to meet self-advocates we did not know or even know if they could speak English, would have seriously thrown me. Nevertheless, these young people embraced the experiences of meeting new people and doing new things.

They used whole body communication to meet, greet and work with attendees from other countries. After a quiet start, a buzz rose in the room along with laughter and gestures in a shared language. That first evening, everyone was exhausted – and the main event was still to come.

While I was queuing to clear security, the scale of what these young people were about to do set in. They were telling the world that they had dreams, aspirations and a right to work. Boy, did they do it.

Helen Laverty

Postscript: force for good

Because of one tweet, Jolley secured an internship then gained full-time employment at Devon and

Cornwall Police.

Goff continues to inspire others with the Pick’n’Mix dance troupe while studying hard at a college.

Time to Shine: www.caapuk.co.uk/time2shine/

Positive Choices: https://positive-choices.com/

Helen Laverty MBE is professional lead for learning disability nursing at the University of Nottingham and founder of Positive Choices t @helen_laverty

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Our people must be free

Community Living

26 October 201920 June 2023 — Autumn 2019

Activist Simone Aspis reports on a campaign with two aims – to stop people being locked up in assessment and treatment units purely because they are disabled and to make friends with those detained in institutions

Thirty months ago, I was repeatedly contacted by an inpatient in an assessment and treatment unit (ATU) , who asked me to be her advocate – on the basis that I am disabled and campaign for disabled people’s rights.

‘Oh crikey,’ I thought, ‘What do I know about the mental health system, the law and how it all works?’ I knew nothing, other than watching a few of these dreadful programmes exposing the horrible abuse that goes on in such institutions.

Since then, it has been a roller-coaster ride, dealing with mainly the downs of the mental health system while trying to arm myself with the legislation and policies to advocate for patients’ release from these institutions.

I received help from WISH, a voice for women’s mental health, where a lovely and supportive disabled advocate who was also a qualified independent mental health advocate (IMHA), helped me with some of the challenges of dealing with the system.

Getting involved in the anti-ATU online community, I realised the level of disempowerment many inpatients’ experience despite having a legal entitlement to independent mental health and capacity advocates.

Inpatients, including one who was 15 years old, asked for advocacy support, which could be anything from attending meetings to arranging care and treatment reviews and community care assessments.

Hands tied

There is an issue about mental health advocacy services themselves. IMHAs and other hospital-based services are commissioned by the hospitals and therefore questions have been asked about their independence. Sometimes the advocate’s hands are tied by ward staff who can be interfering and ignore their points, which defeats the point of advocacy.

Advocacy needs to be more structured, and made easier for advocates to support patients, and without having to go through ward staff who may be the subject of the patient’s complaints or feedback.

IMHA advocates often do not have the necessary skills and training to work with and understand the communication needs of autistic patients and those with learning difficulties.

One person I met said: ‘Often I have found that IMHAs have no training in autism and therefore cannot relate and are unable to fully understand my point of view.

‘For example, when requesting for reasonable adjustments to be made during ward rounds, I wanted the information in a written format from the doctor before we met and I wanted time to ask questions and ensure I fully understood what was being communicated – this request wasn’t fully understood and supported by either the doctor or the IMHA. It transpired that this was because I was perceived as not requiring this communication adjustment.’

The Free Our People Now campaign is led by people with disabilities. Its aim is to get disabled people, particularly those with learning difficulties and autism, out of psychiatric hospitals and ATUs, while campaigning for their closure.

The campaign has two aims. The first is to work strategically to prevent thousands of people from being locked up in institutions as a result the of government’s attack on our inclusion in society. We want to do this by campaigning for an overhaul of mental health and capacity legislation so that it is compatible with the UN Convention on the Rights of Persons with Disabilities. The ultimate aim is that disabled people can no longer be detained solely on the grounds of disability, which is the case with both the Mental Health and Mental Capacity Acts.

Second, we will inform our strategy by making friends in institutions, an approach adopted 30 years ago by the disabled people’s independent living movement.

Through my advocacy work, I am gaining first-hand experience of what needs to change at a strategic level, such as laws that allow our peers to be locked up in these institutions with no regard for their human rights.

Peer treasure

The campaign is based on the successful rights campaigns of the 1970s when many disabled people lived in large institutions with no control over their lives. Peer support was at the centre of much of this work.

One former ATU patient comments on the value of peer advocacy: ‘The biggest advantage is that the person can fully relate to the person they are supporting as they share the same or similar condition. This cannot be overestimated.’

‘So many times in hospital people would say, ‘I know how you feel’ and this really isn’t true unless you’ve been in the same or similar position, which most had not.’

Peer support can also be empowering – when you can’t see any light at the end of the tunnel, a peer is sometimes the very person you need to remind you that you can do it and you can make it.

There are disabled people including ATU survivors who would like to go into institutions and advocate for their fellow peers. Many of them, including myself, want to have training and be part of a supportive community. We need your help – we need money to bring disabled people together and get the training and support we need to help us Free Our People Now.

For more information, contact Simone Aspis at simone@changingperspectives.org.uk

To donate, go to www.justgiving.com/campaign/free-our-people-now

www.simoneaspis.co.uk

Simone Aspis is a disabled person acting as an advocate for detained inpatients with learning difficulties and autism who want to be released from psychiatric hospitals. She has more than 20 years’ experience campaigning for disabled people’s human and civil rights, working for People First, the United Kingdom Disabled People’s Council, the Alliance for Inclusive Education and Not Dead Yet.

Following the legal routes to securing a long-term home

Community Living

26 October 201920 June 2023 — Autumn 2019

Everyone needs a roof over their heads – but do social services or housing authorities have to provide one? Belinda Schwehr sets out the law behind getting a home and how authorities may obstruct this

Social services departments have a duty to provide housing in only exceptional circumstances, but these are worth knowing about.

People with section 117 rights Mentally unwell patients sectioned in psychiatric facilities with rights to aftercare under section 117 of the Mental Health Act are often told by social workers: ‘There’s nowhere suitable available right now.’

These officers do not seem to know that the s117 aftercare function enables them to arrange whatever the individual needs to meet aftercare requirements, and that best endeavours must be made to get these needs met.

This principle means implicitly that staff need to make a formal decision (sooner rather than later, but certainly within six months) as to what is needed for the rest of the discharge aftercare plan to work feasibly.

This includes determining whether having somewhere stable to live is, in their professional judgment, an essential part of this. They cannot just say: ‘We don’t ever provide housing.’

If they considered this question properly, they would then have to fund the actual accommodation instead of taking ages to get tenancies and housing benefit sorted out to cover the rent, a route that is obviously better for public bodies but less unambiguously so for those who qualify.

This necessity to provide housing can arise in law for s117 commissioners if a suitable tenancy in a supported living house with an onsite specialist provider cannot be accessed within a reasonable time; this can be because there is no vacancy or the care is not regarded as ‘affordable’ by the commissioners. It can also arise if the intended tenant will not apply for housing benefit or

will not qualify for enough funding if the type of landlord means that housing benefit entitlement is restricted.

Wanting a tenancy

People with learning disabilities who want a tenancy can include those already accommodated, albeit not ideally, in a care home, or housed by their relatives and receiving home care. They have been told that they ‘could’ or ‘should’ have the opportunity to move into the community into a tenancy with housing benefit to pay the rent.

Those with capacity to understand the difference may well want to get out of a care home and move into supported living of their choice, along with chosen, compatible co-tenants. However, these homes and how they are managed are unregulated by the Care Quality Commission, unlike care homes.

“No reasonable social services authority could have left the need to be rehoused urgently out of a social care assessment ”

What happens in practice?

People seeking a tenancy are often directed by their local authority towards vacancies in co-tenanted houses with only a single, onsite provider, on a block contract at a shared care price. Such arrangements cannot easily be changed to those where tenants have individual Care Act budgets.

An alternative is a setting with low-level services available from a housing provider through its own support service. People are not encouraged to take direct payments. In this way, shared care elements expand and individualised packages shrink.

Councils and clinical commissioning groups (CCGs) seem to think that, by withholding a care offer, they can stop a person from signing a tenancy elsewhere. They also think they can make a person take a tenancy on, contractually, with a landlord, as some sort of precondition of receiving care. Both positions are wrong.

However, that does not mean that care commissioners have to find let alone provide a home for everyone who wants or needs one.

Housing versus social services law

Housing authorities have separate, distinct legal duties to people who are homeless or threatened with homelessness. However, they only have to secure longer-term housing for people who are in ‘priority need’, which can include people who are vulnerable because of learning disabilities.

However, the thinking in housing authorities often goes like this: if the person is owed a care-related duty under the Mental Health or Care Act, the housing authority does not have to accept them as ‘homeless and being in priority need’ – they will be sorted out by the liable body.

A housing authority may also say a person is intentionally homeless as they lost their home because of challenging behaviour, which reduces the duty owed; guidance has always said people with mental illness or capacity issues should not be regarded as intentionally homeless purely because they have broken tenancy terms – they may have lacked the capacity to have had any insight into the impact of their decisions.

Flagging that up can only help, we think. But what can be done about that ‘liable body’ hurdle to that homelessness duty?

Housing authority duties

Here’s what to raise with the housing department if one is knocked back to social services or s117 planners for a roof. The existence of clear or likely Housing Act duties (ie when a person cannot be seen as anything other than homeless) explicitly excludes or is more important than any possible Care Act legal obligations to provide accommodation, at least in the first instance. This is because of the principle that other agencies’ primary or more direct duties come first, before others that are less explicit.

Examples are:

NHS continuing healthcare (CHC) trumps social care provision under Care Act duties because it is not chargeable. A person cannot get housing under the Care Act if they are owed a Housing Act duty. CHC status negates social services liability in any event.

The continuing healthcare national framework does not explicitly say that housing duties trump CHC, but caselaw has established that CCGs can contact housing authorities first and only use the fallback of providing accommodation themselves if they absolutely have to RÊ(Whapples) v Birmingham CCG (2014).

The right to receive benefits means that social services have no obligation to fund rents simply because people are poor. Direct payments are a conversion of a personal budget for meeting needs, not a general income subsidy in money. Councils have to point to a power to give public money to people before they can do it, or at least show there is no express prohibition if they want to use the Localism Act to hand out cash to top up rents.

s117 aftercare rights cease when one’s mental health condition stabilises, and are non-chargeable. For that reason, they seem to trump both CHC and social care status for at least the mental health aspects of aftercare, according to the national framework for CHC.

There is no equivalent to s3 of the Care Act to clarify that the Housing Act duty trumps the s117 duty in all cases of homelessness but the case law and code suggest it does.

People in assessment and treatment units

Moderately capacitated people who could sign a tenancy are not usually thought to be homeless if they are waiting in an ATU, still under detention in hospital or unsuitably accommodated in the community, which we do not think is right.

Maybe it is because housing authorities are not used to groups of arguably ‘homeless’ people applying to live together in a homelessness application.

We do not think cultural unwillingness to engage with such applications is respectably lawful, when housing authorities could obviously work with s117 or social care teams for reassurance that the support will be enough to enable people to observe tenancy obligations.

Social services liability

Now, here’s what to say when rowing in the other direction – towards social services being liable to fund access to unregistered accommodation.

The provision of mainstream housing can sometimes be a social services duty because, even when the housing authority owes a duty to someone homeless or is applying its allocations policy to those on the register, it may have a duty to provide only temporary accommodation or have an eventual long-term vision for that person. This is so inherently unstable that, while lawful in housing law, it does not suitably meet the person’s needs or human rights when seen in the round.

The courts have held that a disabled or ill person could need accommodation much sooner and more urgently than a housing authority expects to be able to manage. In R v Islington ex p Batantu (2000), the judge held that no reasonable social services authority could have left the need to be rehoused urgently out of a social care assessment, and thus trigger a duty to provide a home, even though the man was on the housing register with maximum points.

Until 2018, one could not access housing through homelessness legislation if one lacked the capacity to understand a tenancy, even if one had a deputy. However, if nobody is prepared to seek a deputyship with authority for a Housing Act application or if the wait will be too long, social services or s117 commissioners may have to provide housing via other routes, such as buying a home for people or finding other accommodation, not simply signposting and making the person wait.

Spreading that understanding, along with a coherent threat of judicial review, ought to make public bodies with care commissioning duties more willing to offer empty homes and housing benefit deficit guarantees and take deputyships, even if nothing else will.

For more on the interface between housing and social care duties and s117, and what CASCAIDr intends to do about the legal ambiguity people are caught in, please go to https://bit.ly/2khwh9V

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

References R v Islington LBC ex p Batantu (2000) 33 HLR 76, QBD

(Whapples) v Birmingham CCG [2014] EWHC 2647 (Admin)

More stories about: Care Act Housing Human rights Social care law

How to complain about the DWP

Charlie Callanan

26 October 201920 June 2023 — Autumn 2019

The Department of Work and Pensions and its contractors are known to make errors or treat people badly. You can ask them to put matters right and may get recompense, says Charlie Callanan

Photo: Seán Kelly, seankellyphotos.com

Many people with a learning disability are likely to be aware of the failings of the Department for Work and Pensions (DWP) and the contractors who carry out services on their behalf. Unfortunately, poor administration, delays and mistreatment of claimants are problems frequently associated with this government agency.

However, rather than continue to put up with the DWP’s faults, clients have options to express dissatisfaction, get issues resolved and, in some circumstances, get financial compensation.

A client may complain about an issue that has not or could not be sorted out quickly and easily by frontline staff. This could include, for example, unreasonable delays to and mistakes in benefit claims, a lack of information, bad advice and mistreatment by staff.

Complaints can also be made to DWP contractors, including the private organisations that carry out face-to-face health assessments for disability benefits.

Advice agencies often hear of poor treatment by contractors. These run from clients being turned away from assessment centres because appointment slots have been overbooked to allegations that healthcare professionals have made incorrect statements in assessment reports.

There may be some crossover in the issues involved in challenging a decision and raising a complaint. For example, a client who appeals against a decision that they are fit for work may also have reason to complain about how they were treated by the health professional who carried out the related work capability assessment.

What to include

Complainants should provide a statement of what happened, when and where it happened, who was involved (including name/s of staff if known) and how it has affected them.

Essential information to provide includes the client’s full name, national insurance number, address and contact numbers and/or email address.

Complainants should tell the agency what they would like it to do to put things right. This might be to apologise or to take steps to prevent the same mistake from happening again, such as training staff.

The complaint should be made as soon as possible after the issue arose. It can be made over the telephone, in writing or in person (eg at a job centre). The client should note the names of any staff they speak to when making a complaint.

The process

Making a complaint about the DWP has three stages:

– Complaining to the office where the issue arose

– If the client is not satisfied with the DWPÕs response, asking for their complaint to go to a complaints resolution manager

– If the client remains unhappy, the complaint is passed to a senior manager.

Complaints to organisations carrying out work for the DWP, including private organisations that carry out face-to-face health assessments for disability benefits, usually involve at least a two-stage process, with the second stage being dealt with by a senior manager.

Once a person has been through all the internal complaint stages, if they remain dissatisfied, they can ask the government’s independent case examiner to consider their complaint; they have to do this within six months of the final response. If the independent case examiner accepts the complaint, they will look at how DWP responded to the complaint. It can suggest how the matter could be settled.

If the client does not agree with the response from the independent case examiner, and the complaint is about a government department such as the DWP, the client can ask their MP to forward their complaint to the Parliamentary and Health Service Ombudsman.

People can also ask their MP to intervene over a complaint to the DWP and other agencies. An MP may be able to apply pressure to get the matter dealt with more promptly and even raise the issue with a minister. However, because their surgeries are usually busy, MPs are likely to expect constituents to try to get their complaint resolved with the offending organisation before contacting them.

Clients may be able to seek compensation from the DWP if they can show they have lost out financially as a result of the agency’s error or delay.

For example, if a claimant was told by job centre staff that they could not claim employment and support allowance (ESA), and six months later were advised this information was wrong, they could claim compensation as ESA can be backdated for only three months.

“ It is possible to seek compensation for interest lost on arrears of benefit, expenses incurred and any hardship or distress experienced by the client It is possible to seek compensation for interest lost on arrears of benefit, for extra expenses incurred and for any hardship or distress experienced by the client”

If the independent case examiner or the Parliamentary and Health Service Ombudsman upholds the complaint, it may order the agency to pay compensation. It is possible to seek recompense for interest lost on arrears of benefit, extra expenses incurred and any hardship or distress.

All the agencies people contact about benefits have guidance on their websites about how to make a complaint to them.

Charlie Callanan is an adviser and writer on welfare rights

Department for Work and Pensions complaints procedure: http://tinyurl.com/qztgjhc

Parliamentary and Health Service Ombudsman – easy read information on making a complaint: http://tinyurl.com/y5w5t3n4

More stories about: Benefits Welfare rights

Letters

Community Living

26 October 201920 June 2023 — Autumn 2019

Letters

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

Cut the contracts to pay and train staff

Jan Walmsley raises some interesting points and questions regarding the vagaries of self-directed support that we fought so hard for over the years (summer issue, page 19).The way to better paid and better trained staff is to pay the same amount that local authorities pay commercial providers. It seems crazy to pay a profitmaking company more for people who are doing the same job. More to the point, the additional rate paid to preferred providers generates a profit for them. That profit is money lost to the system and would be better used to pay personal assistants a decent wage,and to provide the training required to ensure good care.

Having been involved in this work since Having been involved in this work since 1984, I am astounded at the lack of common sense on the part of local authorities. They have a need to keep control over people who wish to live a life in the community, while at the same time not taking up the opportunity to provide better services for those who require them.

After all, that is what they are paid to do. We should also look at what it costs councils to deliver social services and whether there is room for savings to be made there. Perhaps we should start at the cost of staff absence through longterm sick leave and holidays. This should all be thrown into the melting pot.

In other words, we need a root and branch review on council expenditure so services can be delivered in a more cost effective way.

Les Scaife

West Lancs Peer Support

Skelmersdale

Know your rights under community care law Manchester 14 November

£120 (£110 subscribers) – Some concessions still available at half price for unwaged familiy carers, relevant students & some small local advocacy groups- enquire rosecli@btinternet.com

“Critical information for the times welive in” (feedback from attendee)

Community Living is running law seminars led by barrister and social care expert Belinda Schwehr

There will be time to discuss individual problems. All welcome l See advert on the inside front cover or on website:

https://www.cl-initiatives.co.uk/community-living-social-care-law-seminar-belinda-schwehr-14th-november-manchester/

Commissioner-think

After reading Jane Lloyd’s moving account of what happened to her sister after her service was reduced (summer issue,page 10), I feel an important point should be added to those in the article.

Commissioners should consider the impact, given a person’s history, of proposed reductions in support. If they did this, such distressing personal catastrophes might be avoided.

Rose Trustam Lancashire

Sporting prowess

In my professional role, I review care plans, risk assessments and health and safety. A recent personal experience with my brother, who has both learning and physical disabilities and uses a rollator to help him get about, was very different.

Our extended family (11 of us, including my brother) went to see our Wigan Warriors rugby league team in the grand final at Old Trafford.

On arrival, we found our disabled parking space was at the other side of the stadium from our seats. On the long walk round, my brother became tired and ended up on the floor. To the rescue came a large party of supporters from the opposition, who picked my brother up then proceeded to push and pull him round to our entrance.

When we arrived, there was no nearby disabled entrance. So, with the help of a steward, we made our way to the disabled entrance and commandeered a wheelchair, pushed by the steward to shouts of: “Excuse me, wheelchair coming through!”

Next, we found there were 13 steps up and 13 more down to our seats. A dozen enthusiastic fans, determined that a fellow supporter should see the game, insisted they carry my brother, held up high in the air in his wheelchair, up the steps. We drew the line at carrying him down and he got out of the wheelchair and the supporters helped him down and into his seat.

This showed the difference between receiving help as a family and services from an agency. We made the decision together with fellow fans and it happened. In a professional capacity, I would have been querying the planning and asking for a risk assessment. It would have made an excellent video of What Not to Do in Regard to Moving and Handling.

However, my brother talks about this very regularly as a funny and positive experience and we still laugh about it when we tell people.

Incidentally, Old Trafford and its disabled facilities are excellent, as are its stewards and ground staff.

PS Lancashire

A useful, challenging read

I just got the latest edition of Community Living. It is a great read. Thank you – loads of important, useful and challenging stuff.

It was rich reading with good contributors.

Samantha Clark Chief executive, Learning Disability England, Faversham

Finding Ivy: a life worthy of life

Community Living

26 October 201917 April 2024 — Autumn 2019

Helen Atherton and Florian Schwanninger discovered the name of a young woman with learning disabilities born in the UK and murdered at a Nazi killing centre on a memorial plaque. They decided to find out everything they could about Ivy Angerer, and her story can finally be told.

Schloss Hartheim, an old castle near Linz in Austria, became an institution for mentally disabled people in 1898. In 1940, it became one of six killing centres established to fulfil the goals of a Nazi euthanasia programme known as Aktion T4.

The programme, with its headquarters in Tiergartenstrasse 4 (T4) in Berlin, targeted and sought to eliminate those whose lives were deemed ‘unworthy of life’. During 1940 and 1941, around 70,000 adults with learning disabilities, mental health problems or other disabilities were murdered in the German Reich by carbon monoxide gassing under the aegis of Aktion T4. From 1941, tens of thousands more died in clinics through deliberate neglect, hunger or harmful drugs.

In total, there were at least 200,000 victims of Nazi euthanasia, 30,000 of them at Schloss Hartheim. Aktion T4 was the precursor to the Holocaust against the Jewish people, in which many of its personnel actively took part.

Little is known about the lives of the victims. Their anonymity reflects the marginalisation of people with disabilities in life and in history. Only recently have their names finally been released, and research into their lives remains in its infancy.

Finding Ivy Angerer

We saw the name Ivy Angerer on a plaque commemorating people murdered at Schloss Hartheim. It was intriguing to see she had been born in Scotland.

Five years ago, we decided to investigate who she was, to give a voice to the ordinary person behind the name and to rebuild Ivy’s life. With help from German, Austrian, Polish and British archivists, our journey has involved online censuses, birth and marriage records, newspapers, International Red Cross archives and records of enemy aliens.

We discovered the existence of a family grave in Vienna, which we visited to find that Ivy was buried there. Through this, we were able to make contact with family members, who then held a family meeting at the grave on All Hallows Eve to discuss whether they would allow Ivy’s story to be told publicly. They agreed it should be.

Earlier this year, we met family members at a Vienna cafe, where they handed us an extensive family archive relating to Ivy, including historical documents and photographs.

The family also granted permission for Ivy’s name to be made public – an important part of her being able to have ownership of her story.

Ivy’s story

Ivy Berta Meta Angerer was born in 1911 in Broughty Ferry, near Dundee in Scotland. Her mother, Maria Neuman, was from Silesia in Prussia, and her father, Josef, from Vienna. Josef worked as a confectioner and was described as a hardworking and conscientious employee. It is unclear why they came to Scotland but migration was common at this time as people escaped poverty at home.

Ivy had a learning disability. Her medical records indicate that she had a ‘congenital and early acquired state of imbecility without detectable cause’.

Regardless of her diagnosis, early photos clearly indicate that she was a dearly loved child. However, the family’s happiness was to be short lived.

During the spy fever of the First World War arising from fear of a German invasion, Ivy’s father Josef, along with many other German and Austro-Hungarian men living in Britain, was arrested and held in enemy alien camps for the rest of the war. There is no evidence that he was any sort of spy.

It is assumed that Marie and Ivy were repatriated to Marie’s hometown of Halbau in Silesia. Marie died in 1916. Motherless and with her father absent, Ivy was probably cared for by family members.

A picture of Marie’s grave sent to Josef while in the camps shows he was aware she had died. Having been forcibly separated from his daughter, he had now lost his wife. In 1919, Josef was repatriated. He was reunited with Ivy and returned to work as a confectioner in Vienna, marrying a fellow worker in 1923.

Ivy attended school and her reports indicate that she was hardworking and good at singing but struggled with the more academic subjects.

In 1931, aged 20, she was admitted to the Am Steinhof psychiatric hospital in Vienna, the largest institution in continental Europe with 3,000 beds.

Between 1940 and 1945, it was to bear witness to the murder of more than 700 children in the first phase of the Nazi euthanasia programme.

Ivy’s medical records state that she had been admitted (under guardianship) because of mental illness. She was categorised as a ‘high-grade’ imbecile. The annual medical review indicated that she was generally healthy, quietly independent and worked in the laundry. However, she was said to be prone to episodes of confusion. Little else is known from the brief annual medical reports.

Ordinarily, Ivy would probably have remained at Steinhof; however, these were not ordinary times. In 1938, a significant event was to change the course of this young woman’s life.

Nazism comes to Austria

In March 1938, German troops invaded Austria. Hitler announced the Anschluss (connection) of Austria to the German Reich. In Vienna, he was received enthusiastically by many.

Tens of thousands of political opponents and Jews were arrested or abused. German laws on eugenics and racial hygiene, which decreed isolation and sterilisation for ‘carriers of inferior genetic material’, became valid in Austria.

In October 1939, under the cover of war, Hitler signed the so-called ‘mercy death decree’, which provided the legal basis for a programme of extermination of people labelled ‘useless eaters’.

In late 1939, several thousand psychiatric patients and disabled people were shot in occupied Poland, and the first experiments in murdering patients with gas were carried out. At the same time the so-called ‘Kindereuthanasie’ (child killings) began. Disabled infants and toddlers were reported by midwives and doctors and sent to ‘children’s departments’, where they were drugged or died through neglect.

A programme of murder by gassing at six killing centres was planned. Aktion T4 began in early 1940. It involved the registration of all patients with disabilities, whose fate was decided by doctors who examined their forms in Berlin or commissions of doctors sent to institutions to select patients for extermination. It can be assumed that Ivy Angerer was examined at Steinhof by such a commission and deemed to have a ‘life unworthy of life’.

At the centres, the method of killing was the same. Patients were told they would be moved to a new facility. To avoid detection, families were never given correct information about where their relatives had been taken. Ivy’s family was told she had been taken to a town in Saxony in Germany but her destination was in fact Hartheim, some 180km from her hometown. Nurses accompanied the transports to the killing centres on special grey buses.

Up to 80 people worked in Schloss Hartheim, including psychiatrists, nurses, administrators, chefs, janitors and crematorium workers.

When the buses arrived, the victims were taken inside. They were stripped and received by a doctor and nurses in white coats, who told them they were in a new clinic and would now be showered. The gas chamber was disguised as a shower room.

After death, the bodies were taken to the crematorium. Their ashes were poured into the Danube or sometimes sent in urns to families. Families received death certificates with fabricated causes of death. Ivy’s cause of death in 1940 at the age of 29 was registered as ‘acute liver atrophy’. Many families suspected their relatives had not died a natural death.

Knowledge of the murders spread throughout the German Reich. There were rumours and unrest, including a protest by family members at Am Steinhof.

Finally, in August 1941, Hitler stopped Aktion T4. He feared the deterioration in the mood of the population. However, the murders continued, with tens of thousands dying in hospitals through deliberate neglect or direct murder by doctors and nurses.

Ivy’s legacy

Ivy’s story is an important contribution to the history of Aktion T4; it also encourages critical questioning of attitudes to the most vulnerable today, in particular people with learning disabilities and the true extent to which they are accepted as valued citizens.

While one would hope that wholesale killing is a thing of the past, subtle and increasingly socially accepted practices that can lead to the same outcome persist. Think, for example, of antenatal screening for Down syndrome and the poor-quality healthcare that contributes to men with learning disabilities dying on average 13 years and women with learning disabilities 20 years earlier than average. Think of the controversies over ‘do not attempt resuscitatation’ notices for patients with learning disabilities in NHS hospitals. Nazi euthanasia demonstrates in a shocking way what happens when the value of a human life is measured in purely economic terms.

Ivy’s story carries a powerful message about the necessity of promoting people’s humanity and their belonging in communities and society. We must hear the message, and we must remember Ivy.

Helen Atherton is a lecturer in nursing at University of Leeds; Florian Schwanninger is director of the Schloss Hartheim Learning and Memorial Centre in Austria

More stories about: Autism History Hospital Institutions

Professional distance versus human touch

Community Living

26 October 201920 June 2023 — Autumn 2019

Do keeping professional boundaries and promoting autonomy risk denying people emotional connections that are an essential part of being human? Anthropologist Carys Banks fears so

When we think about empowerment in the lives of people with learning disabilities, what do we really mean?

If we think of empowerment in the sense of liberal individualism – of autonomy and self-determination – this can be described as the capacity of a rational individual to make an informed, un-coerced decision.

Conversely, at what point should people with learning disabilities be stopped from doing something they want to because it is considered unwise or unsafe? How far can acts of protective intervention be taken before legitimate coercion to keep people safe becomes a violation of their liberty?

These questions are of interest to me because they came to form the focus of my doctoral research in which I explored how such values are played out in the lives of people with learning disabilities.

Although the aims of current policy to empower people with learning disabilities are benevolent, there are negative implications of focusing heavily on liberal individualism; we may unintentionally be depriving such vulnerable people of important emotional connections.

Certainly, the basis of these questions has been a central component of Anglo-American and European political philosophy and social-legal thought for hundreds of years. In turn, from the middle of the 20th century, these ideas have shaped learning disability policy and practice in the UK, as well as in services in other nations that define themselves as liberal and social democracies.

The impetus largely boils down to determining how ‘the good life’, as philosophers have called it, might be achieved for both individuals and society at large, the definition of which has come to encompass a variety of forms.

Liberal ideas of what it means to live well have, in the last half century, become inextricably entwined with the management and delivery of professional care that some people with learning disabilities require every day.

Perhaps most notably in recent decades, such ideas have formed the basis of the theoretical approach of the social model of disability which, as well as acting as a counter to the dominance of the medical model that tended to define people too heavily by their pathology, has also called for people with disabilities to have access to the same opportunities as those generally available to other citizens.

Independent aims

Yet this kind of approach to achieving the good life is not without its problems, particularly regarding equality, as such ideas require individuals to have the understanding and resources needed to flourish. If these aspirations cause problems for the general population, it is reasonable to expect they will present more difficulties for others, such as those with learning disabilities, who experience cognitive and sometimes physical impairments, which, depending on the severity of their condition, will arguably affect their ability to empower themselves in these ways.

From this point, an inherent tension exists in learning disability social care policy. How can independence and community inclusion be promoted for people when their condition means that, in varying ways, they are eligible for and require support to manage aspects of their lives? This tension was the central focus of my research.

Broadly, my research interests span health and social care support for people with learning disabilities. I am particularly interested in relations of care and what care in the lives of people with learning disabilities might indicate about the human experience.

I spent 10 months in learning disability support settings provided by two community organisations in south-west England. To observe how the consequences of government policy were experienced, I spent time with people with learning disabilities and those supporting them in a range of places, including supported living and residential care, as well as daytime services such as day centres and employment training. I also spent time with third-sector bodies, including an advocacy group and a community church group.

I explored how government policies that are shaped by liberal notions of individual autonomy and self-determination are experienced in the everyday. The narratives of three young men in particular illustrate well the tensions between policy intended to equip young people with learning disabilities with all the opportunities afforded to others of a similar age and the reality that, as people with learning disabilities, they could at times be highly vulnerable and reliant on others around them for support. The three men – Mark Whyatt, Joey Tammer and Sam Treadwell* – were in their 20s and living together in supported accommodation.

I saw how the three young men often struggled to achieve independence and community inclusion. So much of this appeared to be down to the limits their condition placed on them. Without staff support, they tended to be unable to do many things, such as cleaning, paying household bills, going to the shops and organising general aspects of life.

I also saw tensions and conflict develop between the young men and their support workers, who would tirelessly attempt to get them to engage in domestic duties. These activities were not always of interest to the men but staff saw them as important markers of living a normal life.

Elsewhere, there was at times a focus on the young men getting jobs in the community, but these aspirations were not realised as their needs relating to their learning disabilities meant they could not perform tasks the roles required. Unfortunately too, because they were considered to be working towards independence, the funded hours of support provided were not enough to allow some hours to be allocated to support them in carrying out tasks required in a job.

Social and emotional connection

In addition to trying to shape people as responsible and engaged citizens, policy imperatives shaped social relations between individuals with learning disabilities and their support workers. This was played out as the young men tried to engage with workers as friends, asking them to go for coffee or to the cinema.

Perhaps more affecting was when I saw how the young men attempted to engage emotionally with their support workers in a physical sense. When out and about in the community with the men and their support workers, I would regularly see how they would try to take a support worker’s hand.

At an employment training service at a local farm I regularly attended with two of the men, they would attempt to engage their support workers in hugs. Generally, when this happened, I would watch as workers quickly pulled their hands away or refused to reciprocate in a hug.

The three men also attempted to engage with me in these physical ways. I recall one day at the employment training service when one of them leant his head against my shoulder. I considered trying to ignore this. I felt conflicted as to how to respond: on one hand, I was aware these kinds of interactions were not generally permitted yet, on the other, I felt compelled to respond to what felt like a strong need for emotional connection and reassurance from another human being. I responded and put my arm around him.

At this point, a staff member walked past, saw this and, after telling the young man he knew he should not be doing that, turned to me and warned me that he might ‘get the wrong idea’.

Ability versus aspiration

In the examples above, I have tried to illustrate the tension between the policy goals of independence and community living and the problems people with learning disabilities can experience in achieving these.

Quite often, I found people’s intellectual and, for some, physical impairments appeared so embodied that it would be very difficult if not impossible for them to achieve these aspirations. In contrast, it was emotional connections that people with learning disabilities tended to seek from those around them, who were mainly support workers.

Boundaries become barriers

At an organisational level, calls by the young men for emotional connectedness with support workers were viewed as inappropriate, particularly when manifested physically. This was because they transgress the boundaries of professionalism that have become the defining means by which health and social care staff are expected to relate to the people they support.

Just as I felt conflicted, there were times when staff also appeared to struggle with how to respond to requests to hold hands and for embraces from those they supported. When faced with the vulnerability of those in front of them, workers would sometimes momentarily transgress professional boundaries and respond to calls for physical contact. However, these responses were not enough to have a significant impact on how such interactions were perceived more generally.

The need to create distinct, professional boundaries between staff and people in receipt of support has a logical basis. It enables support to be transparent and accountable, ensuring that vulnerable people are not exploited or, at worst, seriously abused. Furthermore, placing the person at the centre of support relates to concerns about paternalism and its limiting effect on self-empowerment, autonomy and the right to be active citizens. As such, staff are discouraged from engaging emotionally with people they support.

These concerns are valid and important, particularly in the context of learning disability care in which many people were Ð and still are – unnecessarily detained in segregated and poorly maintained settings. Yet, in focusing so much on transactional concepts of support and individual autonomy, we might inadvertently be ignoring an inherent human need to feel connected to others.

For people with learning disabilities, who tend to have limited social networks, the ability to engage in an emotional sense with the people they see most days Ð their support staff Ð is arguably crucial. You could argue that no amount of independent freedom is meaningful if you do not also have access to the kinds of intimate relations with others that make life emotionally meaningful.

*Names have been changed

Dr Carys Banks is an anthropologist at the University of Surrey. Her work explores relations of care between people with learning disabilities and staff supporting them. She was the 2016 recipient of the Radcliffe Brown/Sutasoma award from the Royal Anthropological Institute

Simon Jarrett: Editor’s blog Autumn 2019

Simon Jarrett

1 October 201920 June 2023 — Autumn 2019

Editor’s Blog – Autumn Issue 2019 (33:1)

No longer wanted – are some types of people being screened out?

In this issue we carry a feature about Ivy Angerer, a young woman with learning disabilities born in Scotland to German/ Austrian parents who died aged 29 in 1940, a victim of the Nazi killing programme against disabled people (Finding Ivy, a life worthy of life)

This is first and foremost a human story about the terrible tragedy that can unfurl when people with learning disabilities are seen as less than human. It is also a tribute to two incredibly intrepid and dogged researchers, Helen Atherton and Florian Schwanninger, who for six years have pursued the story of what happened to Ivy Angerer to enable her to have a name, a face and a life, rather than be consigned to the nameless oblivion that Nazism wished upon her.

At the end of their article Atherton and Schwanninger draw links to some current practices which reflect attitudes to the most vulnerable today, including ante-natal testing for Down syndrome. Are we too trying to eliminate certain types of human being from our world? Do the eugenic doctrines which underpinned, in their most extreme form, fascist ideology still linger more subtly in our thinking today?

The actor (and mother of a child with Down syndrome) Sally Phillips, who is prominent in the debate about ante-natal screening, has argued that screening is not about eliminating a disease, but about removing a certain type of human.

She has also acknowledged that it is a complex ethical issue where the right of a certain type of human to exist can clash with the right of a woman to make choices about her own body. However, she argues that the information given alongside ante-natal tests should be accurate and balanced, and not predicated on the belief that children with Down syndrome in particular, and children with disabilities in general, are a bad thing for the world and need to be prevented.

No one is saying that those who advocate ante-natal testing as a preventative mechanism for doing away with Down syndrome are equivalent to Nazi ideologues who carried out the deliberate and systematic murder of people with disabilities 80 years ago. Or at least no one should be saying that.

But we must ask what lies beneath people’s thinking when they advocate mass ante-natal screening, or, for example, unthinkingly apply ‘do not resuscitate’ notices to hospital patients with learning disabilities. If at heart they believe that there should be no place in the world for people with disabilities, then their thinking is all the more dangerous for its subtlety and invisibility

Great stories or ‘inspiration porn’?

A recent controversy on Facebook involved an accusation, by a disability activist, of ‘inspiration porn’ against somebody who had posted a video of a young man with autism playing ‘Bohemian Rhapsody’ on the piano. This was a previously unknown phrase to your editor, but caused an outbreak of serious reflection and self-examination.

We often carry stories in this magazine of people with learning disabilities who have achieved in their field or who have proved to be exceptional human beings in some way.

In this issue we feature an interview with Greg Silvester, a superb gymnast and Olympic ambassador who has achieved great things in his life, (A gymnastic gold rush – Sean Kelly interviews Greg Silvester) as well as the story of Francesca Goff and Harley Jolley, two young people with Down syndrome who addressed the United Nations (Ambition makes a global message) .

Readers should be assured that when we carry such stories it is not, as the activist put it, our intention to be ‘heart-warming … to make neurotypical people go all glowy inside and say “aww aren’t they sweet!”’ – it is to draw attention to the work that certain exceptional people are doing, and to redress the imbalance we face in a society that too often frames people as passive and incapacitated, worthy of pity but not of respect.

Residential Care vs Supported Living?

Community Living

1 September 201920 June 2023

Residential Care vs Supported Living: created by parents

This link on the Residential Forum highlights the debate starting on the createdbyparents website about what is better. The Residential Forum learning disability posts

As we see more risks of the loss of real lives in the community with the rise and rise of blocks of flats in the name of ‘supported living’, this debate is important. Is this so-called supported living really under the control of the tenant as we would all expect in our own home or is it actually controlled by the commissioner and/or provider? Is it unregistered care?

In their piece on residential or supported living, createdbyparents.com look at what poor care can be in either setting and wonder if in the drive by commissioners to get more people living in their own tenancies the motivation is now become financial rather than for the person’s best. They see people being forced out of their residential care into supported living and wonder whether there’s not a better life and protection for people with more complex needs in good residential care.

This is a debate which needs to run – and we need to influence commissioners about best practice and real personalised care whatever the setting. What’s happened to learning from our experience and commissioners once again properly partnering with providers as well as families to together get it more right?

In our adult social care conference in Manchester which took place on 14th November, Belinda Schwehr looked at some of the legal issues raised about whether some supported housing is actually care and housing controlled by a care provider or the commissioner of care services now, and hence should be registered. We’ll be reporting on this conference in our Spring issue…

More stories about: Housing Ordinary living Supported Living

Achieving citizenship and inclusion

Community Living

29 July 201920 June 2023 — Summer 2019

Achieving citizenship and inclusion

We often talk about ‘inclusion’ and ‘citizenship’ but what do they mean in practice, how are they related to each other and how can they be achieved? Tim Stainton reflects on his experiences as a father and in his professional life in Canada to find some answers.

My son, who lives with a learning disability, likes to play a game when we are driving. The game involves reading the letters off licence plates and finding words that match the letter.

With great enthusiasm, he will shout out his name for one letter, the dog’s name for another but, when we come to F, he often becomes quieter and more introspective. He will quietly say ‘friends’.

He is an extremely likeable, engaging young man, loved by all who get to know him, greeted at school by students as he races from the car to the classroom, and very involved in school and outside activities, mostly designed specifically for people with disabilities.

But on weekends or holidays, when not involved in organised pursuits or out with the family or support workers, he sits alone playing Wii or watching YouTube. Nobody drops by to hang out. Nobody calls to see if he wants to do whatever teens do when not formally occupied. In short, while certainly part of his community, well liked and well supported, he does not have the kinds of informal, casual and caring relationships that provide the bedrock of community inclusion.

My son is also preparing for the transition from high school. We are fortunate to live in a jurisdiction that has reasonably well-developed support, individualised options and relatively strong protections for his rights. He also has two parents who are very familiar with how the system works and how to advocate on his behalf.

Despite this, it is clear that getting the support he needs to fully pursue his goals and dreams will not be easy. It is unlikely he will get the level of support he requires to easily and effectively pursue post-secondary education or find meaningful work. He is fortunate that, as a reasonably economically secure family, we can fill in the gaps – but should we have to? What of those without the options we have as a family?

If the fundamental goal of a true citizenship-based system of support is to provide people with the means to pursue their goals and dreams on a relatively equal footing with others, then the system, even one as developed as ours, seems to fall short of fully recognizing his citizenship.

Distinct and connected

So what do these two stories of our life tell us? I use them to illustrate the necessity and distinctiveness of the two concepts with regards to: our aspirations for a world where everyone’s citizenship is valued and recognised; and the idea of inclusion, a world where everyone feels a part of something, connected to a community and loved and cared for by others.

“The idea of a citizenship based on people having a type or degree of reason is no longer universally accepted”

Citizenship and inclusion are often used in tandem in discussions around learning disabilities and are frequently conflated into a single concept. It is, however, useful to consider each independently and the relationship between them to fully grasp their implications for people with learning (and other) disabilities.

I will review the two concepts independently then consider how they relate to one another and what each brings to our understanding of how to make a more inclusive world.

Citizenship: legal evolution

Citizenship generally concerns being a member of a political community and enjoying the rights and assuming the duties that come with membership.

Leydet (2017) sees citizenship as composed of three main dimensions: legal status, defined by civil, political and social rights; citizens actively participating in a society’s political institutions; and citizenship in a political community that furnishes a distinct source of identity.While all are relevant, we are mainly concerned with the first dimension here – legal status.

It is this legal status as citizens that has been denied to people with learning disabilities based on the view that they lacked the capacity for full citizenship. Recently, however, arguments have been made against this view on a number of grounds (Leydet, 2017).

The notion that citizenship stems solely from an individual’s capacity and autonomy has been challenged. It is argued that a person’s autonomy is in fact ‘relational’ (about their connections with other people) and that, similarly, capacity is a function not of a person’s independence but of their interdependence. Others have argued that we do not need the concept of moral capacity at all, as it is neither helpful nor necessary when deciding who should enjoy rights and protections (Silvers, 2012).

The idea of an exclusive citizenship based on people being required to possess a perceived type or degree of reason is no longer universally accepted. This idea is directly rejected in documents such as the UN Convention on the Rights of Persons with Disabilities as well as in many national and other legal systems as a basis for policy and practice.

Finally, there is the question of the nature of the rights that come with citizenship. In general, rights in western legal systems are those things necessary to allow an equal pursuit of one’s own purposes and goals, but which are also consistent with a similar right for all. In more common terms, rights are those things that allow and support the exercise of one’s autonomy or self-determination. (Stainton 1994; 2005). Here I take citizenship to mean the range of formal recognition (in laws, policies, rights etc) and the instruments needed to effectively implement them (programmes, supports, interventions etc).

Inclusion and attitudes

Inclusion, on the other hand, is a less formal concept and is defined more by practice and attitudes than by laws. A general concept of inclusion applies to all aspects of social life.

Jordan (2011), writing in the context of general workplace inclusion, offers a succinct definition that can easily be applied to the disability realm: ‘Diversity means all the ways we differ. Some of these differences we are born with and cannot change. Anything that makes us unique is part of this definition of diversity…. Inclusion puts the concept and practice of diversity into action by creating an environment of involvement, respect and connection.’

At its heart, inclusion speaks to the way of being and belonging in community; it is about our connections and relationships to others, mutual respect and a deep sense of equality that goes beyond a formal equality that may or may not be present (Figure 1).

Figure 1 Inclusion is about being and belonging in a community that goes beyond formal equality

While formal citizenship can be achieved through lobbying, advocacy and political action, inclusion cannot be put into law or mandated. While it can be fostered, promoted and celebrated through a host of programmes, projects and campaigns, it is ultimately something that must be felt rather than enforced.

Focusing on citizenship alone may simply result in a formal equality where one is recognised as a citizen; however, the value of that citizenship is minimal if it does not result in valued participation, belonging and relationships in lives. On the other hand, simply focusing on inclusion without the formal rights and entitlements of citizenship risks at best a sympathetic paternalism; at worst, it risks the kinds of exclusion, abuse and marginalisation that have occurred in the past and still occur in the present.

Bach (2017) outlines how community connections are both a protection against exclusion and a means to achieve formal recognition of citizenship. Duffy (2017) also addresses the ways in which citizenship as a primary goal of social policy can contribute to the full inclusion of people with learning disabilities. He notes: “A community of citizens is not organised around narrow measures of human value; instead, it enables multiple forms of human value to be expressed.”

Both Duffy and Bach help explain how ideas of citizenship and inclusion interplay and are mutually reinforcing. Taken together, the two concepts provide a robust framework for moving forward towards a full and inclusive citizenship for people with learning disabilities (Figure 2).

Figure 2 Together, citizenship and inclusion provide a framework for moving forward towards a full and inclusive citizenship for people with learning disabilities

From a foundation in rights, we build towards a true sense of belonging and relationship, which is the ultimate goal of inclusion. The rights and support that come with citizenship provide the necessary foundation but are not sufficient to achieve full citizenship and inclusion (Figure 3).

Figure 3 The rights and support that come from citizenship provide a foundation but are not enough for full citizenship and inclusion

There has been much progress on the citizenship front over recent decades, including the UN Convention on the Rights of Persons with Disabilities coming into effect in 2008, which contains themes of both inclusion and citizenship. We have learned much about what kind of structures and policies support full citizenship for people with disabilities; individualised or direct funding, planning and facilitation, and a strong regime of supports to enable choices through mechanisms such as supported decision making (Stainton, 2005).

On the inclusion side, we have again seen much progress with the closure of institutions, improved access to inclusive education and greater public visibility and acceptance of people with disabilities. We have also learned a lot about the importance of personal connections and how to foster and sustain them.

But, on both the inclusion and citizenship fronts, much is left to be done. Many people are denied full rights of citizenship, while still more struggle to find true relationships and belonging – the keys to meaningful inclusion.

By attending to both citizenship and inclusion as distinct but mutually reinforcing concepts, we can perhaps move closer to our vision of a world where everyone’s citizenship is respected, and where everyone belongs.

Tim Stainton is the director and professor at the School of Social Work and director of the Centre for Inclusion and Citizenship, University of British Columbia, Canada. He has four children, one of whom lives with a learning disability

References

Bach M (2017) Inclusive citizenship: refusing the construction of ‘cognitive foreigners’ in neo- liberal times.

Research and Practice in Intellectual and Developmental Disabilities. 4(1): 4-25

Duffy S (2017) The value of citizenship. Research and Practice in Intellectual and Developmental Disabilities. 4(1): 26-34

Jordan T (2011) Moving From diversity to inclusion. Profiles in Diversity Journal. 22 March

Leydet D (2017) Citizenship. In: The Stanford Encyclopedia of Philosophy. Fall 2017 edn. Zalta EN, ed. http://tinyurl.com/yyo3z44j

Silvers A (2012) Moral status. Journal of Intellectual Disability Research. 56: 1014-25.

Stainton T (2005) Empowerment and the architecture of rights based social policy. Journal of Intellectual Disabilities 9(4): 287-96

Stainton T (1994) Autonomy and Social Policy. Aldershot: Avebury, 1994

Further reading

Stainton T (1998) Rights and rhetoric in practice: contradictions for practitioners. In: Symonds A,

Kelly A, eds. The Social Construction of Community Care. London: Macmillan: 135-144

Mountain lions

Community Living

9 July 201920 June 2023 — Summer 2019

Mountain lions

Stephanie Crawshaw likes risk and adventure. Her father Andy tells Jo Adshead about a skiing trip to Austria

In February, Stephanie Crawshaw set off for Niederau, a small, picturesque Austrian resort, to try out a real ski experience like thousands of other people.

Accompanied by her father Andy and two of her support staff, she was part of a group of nine people with a variety of additional needs. Disabled skiing and snowboarding, now known as adaptive snowsports, have become more common in recent years. Skiing was the obvious choice for this action-loving pair to enable some much needed father/daughter time out. Stephanie is definitely her father’s daughter.

Andrew Crawshaw has taken part in sport for most of his life, competing at national levels in cycling and road race cyling in his 20s. It has always been evident that, although she uses a wheelchair, communicates without using words and has very complex healthcare needs, Stephanie enjoys the outdoors with her dad and is something of a thrill seeker, enjoying the feel of the outdoors and the stimulation of faster action spots.

Stephanie has for some years enjoyed skiing at the Manchester’s Chill Factore centre not far from her home in Euxton in Lancashire, where she is supported by a team from Linkability, a Lancashire support organisation. Welcomed by the staff from Chill Factore, her team have supported her to use the indoor snow slope. Andy recalls:

“Her face told me everything. She has no fear and she loved carving down the slopes in the sit ski [a wheelchair-type device that tilts and slides with a ski instructor holding the chair]. I am able to ski alongside her so this is something we can do together, which is just amazing.”

Andy used GoFundMe to raise funds for the trip and, within a month, had hit the £1,600 target from around 30 people. The total cost with Disability Snow UK was around £4,000. “Their attention to detail was excellent and they made certain everyone had a great time,” he says. DSUK has paid instructors, and each person has a volunteer helper who pays a lower amount. The trip was always going to be a challenge – pushing a wheelchair around a snowy village is hard. The skiing session was moved from morning to afternoon so Stephanie would be fully alert and enjoy it.

The airports provided easy access for the group, who first met up at Gatwick. DSUK used its own bus for the transfers and to take the skiers to the gondola. Andy says: “Clearly, she enjoyed everything about being out and about, enjoying new experiences. She loves being with people. The Linkability support staff, Katy and Christina, made the trip so much easier for me and Steph to have a good time. They both did a fantastic job of looking after Steph day and night.”

At the ski lift, a rope is attached to the sit-ski from both the button and the T lifts, so works like it would for an able-bodied person. The sit-ski is lifted on and off the bigger gondola. People of all abilities can enjoy just about all the mountain. “We did some apres-ski including a horse-drawn carriage ride in the snow and some social time with the group in the evenings, although Steph does like an early night just like her dad now,” says Andy. “As a dad, I simply had an amazing time with my daughter doing something very much together, enjoying both the mountains and fresh air and spending time with a group of like-minded people.”

Jo Adshead is chief executive of Linkability: www.linkability.org.uk

More stories about: Achievement Families Inclusion

We were here: sharing stories of local support

Community Living

9 July 201920 June 2023 — Summer 2019

We were here: sharing stories of local support

People are telling their stories through mobile interviews and life journey maps. These stories can help them remain in their communities, say Sue Ledger and Lindy Shufflebotham

We are the experts on how things worked – it was us who were here.” So said Otis Robinson, one of nine people with learning disabilities who told stories of how they were supported to stay in their communities.

The Staying Local research project drew on unexplored life stories to better understand what supported people to remain local. Taking the lead from life storytellers, the project developed mobile interviews and map-making to support people who use few words to communicate to tell their stories. Life stories were analysed alongside accounts of local support from 36 others closely involved, including families, frontline staff and managers, as well as information from documentary sources.

Our article in the spring issue of Community Living (Ledger, 2019) reported what we found out about how people stayed local. In this article, we explain the project’s life story methods.

Staying local

Keeping people local is a key policy objective (NHS England, 2015). Sadly, progress has been limited, as the previous edition of Community Living showed (Jarrett, 2019). Children and adults placed at a distance often feel that it is their fault that they have been sent away – when it is the system that has failed them.

At the start of Staying Local, both authors were working to strengthen local support and prevent out-of-area placements being made in a crisis. Consultation with self-advocates, families, health and social care practitioners, commissioners and service providers made us ask: how did some people remain local?

This gave rise to Sue Ledger’s Staying Local PhD Research project. This aimed to find out what enabled people to remain in their communities through listening to those who had made it happen.

Why recover and record life stories?

Sharing stories from our past is a good way of telling people about ourselves and is important in building relationships. Yet people with learning disabilities often find it hard to share stories. Some do not use words; others experience problems with remembering dates or putting information in the right order. As people move away from their families and rely more on services or paid support, many stories are lost forever.

We explored how people could recover and share their life stories and, in doing so, answer our questions about how local support had worked for them. Life stories are important to staff, managers and commissioners if they are to provide genuinely person-centred support and help people stay connected to the people and places that matter to them.

Tracing family photos and putting them in date order

Government policy states all people with learning disabilities should be able to live in their communities. Yet we found very few accounts of local support told from their perspective. The voices of those with complex needs – at the greatest risk of being moved away – were very rarely in evidence.

Raymond (above) pointing to his old school and(top left) choosing pictures for his map

Reconstructing and recording life stories

None of the nine life storytellers had any form of life story recorded. There were significant gaps in explaining what had enabled them to stay local – where they had lived, when, who they had lived with and how crises had been resolved. The missing information was accessed through people with learning disabilities, their families, friends and support circles, in addition to documentary sources. Former staff were sometimes contacted.

Mobile interviews

We completed 14 mobile interviews, which involved walking or going on car journeys to support people to recover and share their life stories.

Mobile interviews were trialled as a means of supporting people with less verbal communication to share their life experiences. Their value first became apparent when we accompanied Lenny Smith to photograph the house where he had lived as a child. As we drove through the streets near his former home, he became very animated and pointed to one building, saying, “K Club”.

This turned out to be a former youth club for people with learning disabilities – Smith’s naming it prompted his family to remember how this club was also a source of support for siblings and parents. Being mobile enabled people with less communication to lead researchers and physically point out places of significance. We decided to use mobile interviews with all participants – they were equally productive with highly articulate people.

We gave people cameras; they took their own photographs or we took them on their behalf. The subjects included places they had lived, schools, playgrounds, friends’ and neighbours’ homes, and learning disability services.

We planned the interviews once we had enough information about key places in a person’s life. Familiar buildings and places provided context to support remembering. Sharing such detailed local knowledge would not have been possible in a traditional, static interview. As we did more interviews, people became more confident in taking charge by giving directions, pointing out and leading researchers to places of interest and indicating what they wanted to photograph. Eight people suggested new places to visit and photograph.

Benito Bianchi said: “Go this way, yeah, go down there … my gardening scheme and my old house.”

Smith took a researcher by hand, led us across the road and into a park. We stood by the football pitch and he smiled. His brothers later explained this was where they played football together as children.

Being mobile meant people could show the way and point important places out

Making life journey maps

After the mobile interviews, people wanted to share their photos and stories with staff. Many staff knew little local geography so found it hard to follow the life stories people were trying to tell. Therefore, we developed a mapping tool.

Making the life maps involved choosing images and superimposing them onto street maps to show their journey. Images were loaded onto a computer with a large screen, then people chose the images they wanted. As well as from mobile interviews, pictures came from personal collections, local archives and the internet.

The maps helped improve staff’s local knowledge and find out more about people’s stories, and supported people to share and organise their information.

Otis Robinson and Raymond Sterling’s life journey maps.They are played by actors, and names and places have been changed to preserve confidentiality

Evaluation

We held focus groups with storytellers and three staff teams to evaluate the use of the maps. Storytellers said:

“We have all lost parts of our past” “It’s good to have everything in one place and in the right order.” “The maps helped me talk about the moves I’ve had.” “The map helped me to tell people about myself and my family” “It’s good to choose my own photos.”

Staff said:

“Case files concentrate on diagnosis, treatment and support, so we don’t know these stories.” “The maps and stories highlighted the things we have in common, like losing a parent, rather than the disability.” “We don’t know much about people’s backgrounds. The maps helped people tell us about this.” “It was great to see photos from people’s pasts.”

Life story accounts from people with learning disabilities – including those with high support needs – help us identify patterns of support and services in the lives of those who stay close to home. As hundreds of people continue to be moved away from familiar areas, they make an invaluable contribution to understanding what we need to do to stop this.

Mobile interviews and life journey maps support the recording and sharing of life story information. Without a recorded life story, the extent of people’s networks and attachment to the local area are at risk of remaining hidden, leaving people more vulnerable to being moved away.

Life journey maps and the stories in them are a powerful statement of local belonging and are a way to support to people to state their right to stay near the people and places that matter most.

As Robinson observed: “We have all lost part of our past … That is not right. Your history is what makes you who you are. It’s very good to have it here like this. It belongs to you.”

Names and places have been changed to protect confidentiality, and pictures are posed by actors Paul Christian and Rufaro Asuquo from the Access All Areas theatre company

References

NHS England (2015) Building the Right Support. Jarrett S (2019)

The sorry failure of an ambitious plan. Community Living. 32(3): 10-11

Ledger S (2019) Stories show the way to stay home. Community Living. 32(3):12-13

More stories about: Autism Communication Inclusion Local services

Banging the rights-based drum

Community Living

9 July 201920 June 2023 — Summer 2019

Banging the rights-based drum

After fighting to get her autistic son released from a locked ward, Julie Newcombe could not walk away knowing other parents were in the same boat. She talks about why an approach based on human rights is needed, and an exhibition, Rightful Lives, which explores this.

Sometimes, it would be nice to go back to the old days. The days when you still thought, naively, that you would get proper help for your disabled child. The days when you just assumed a big parcel of practical assistance and emotional support would land on your doorstep and everything would be OK. The days when you weren’t beaten and exhausted.

It certainly was not like that when our son, Jamie, was diagnosed with autism. Over the years, he has gained a few more medical terms after his name, but this has not made a lot of difference to that parcel of help. We have had to fight for pretty much everything along the way. Education, benefits, the right care and therapy – it has been one continuing struggle.

Certainly, there have been some good people, such as individual teachers, care workers and professionals, who have gone above and beyond the call of duty to make a difference but, sadly, the system is set up to make an adversarial approach the norm.

Our biggest battle came when Jamie was detained under the Mental Health Act at the age of 18. Changes in medication and a distinctly punitive approach to behaviour management by his care team at the time resulted in him being admitted to a psychiatric unit.

Five hospitals, a broken arm and some questionable medication changes later, he was discharged to a lovely home where he has since thrived. While he was locked up, he was regularly restrained, put in seclusion and overmedicated. Yet I visited him and took him out into the community almost every day by myself without any issues at all. Our experiences within the mental health system were so damaging that I could not walk away once Jamie was free, especially after it became obvious that so many other families out there have had or are still having similar experiences.

It became important to campaign for change and to support others going through the same thing. I have been involved in various projects and campaigns, but by far the most inspiring and far-reaching has been the Rightful Lives online exhibition, which I co-founded with Mark Brown, a researcher and web designer, and counsellor, author and parent advocate Mark Neary.

Rightful Lives aims to explore the human rights of autistic people and those with learning disabilities. The exhibition is set up in a series of online rooms. Some of the rooms hold exhibits relating to specific articles in the Human Rights Act. For example, we look at the ‘right to life’ or the ‘right to freedom from inhuman and degrading treatment’. Other rooms look at ‘living life’ and at people’s perspectives. Our last update introduced the theme of ‘a day in the life’, where people could send us the story of their day.

In an astonishing array of love, joy, anger and grief, the exhibitors show how it is possible to lead a truly meaningful life when things go right and, equally, how utterly appalling it can be when people do not get the right help and their human rights are ignored. Curating it was an amazing, wonderful experience as we received exhibit after exhibit which took our breath away. The dignity of individuals who have suffered the greatest losses is heart-wrenching, while the joy of those leading great lives and doing great things is infectious. We firmly believe the only way to secure meaningful, lasting change for autistic people and those with learning disabilities is to use a rights-based approach that holds authorities to account when they break the law.Sadly, authorities disregard the law far too often and with apparent impunity.

Individuals and their families and supporters need to be included in decisions about their day-to-day life. They should be leading the process, not playing catch-up with whatever the professionals decide should happen next. We are working to establish a rights-based approach and this objective is certainly gaining momentum. In the meantime, visit the Rightful Lives exhibition (see link at end). You won’t be disappointed.

Human rights and home truths

As we move forward with establishing a rightful life for Jamie, we are looking at the possibility of finding him somewhere to live closer to us. This is something he wants and he makes that very clear.

The residential home where he lives now is at least an hour away. It is a lovely place with an amazing care team, but he would rather be closer to us. That fits with his article 8 rights, under the European Convention on Human Rights, to respect for a private and family life.

As a result, I have started looking at supported living … and that is a phenomenon in its own right. The thinking behind it is summarised in article 19 of the Convention on the Rights of Persons with Disabilities (United Nations, 2008):

a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;

c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.

The idea is that a person should live in their own home, alongside people with whom they choose to live and be able to live inclusive community lives.

The Reach support for living standards, drawn up up by Paradigm, takes this further and stipulates that people should have the right to choose all of the following: who they live with; where they live; how they are supported; who supports them; friends and relationships; how to be healthy and safe; how they choose to be part of the community.

All of this should take place in their own homes, where they get good support, help to make changes in their lives, and have the same rights and responsibilities as other citizens (Paradigm, 2014). These principles are reflected in the National Development Team for Inclusion’s ‘real tenancy test’, which stipulates the requirements for a tenancy to be genuine, with a tenancy agreement in place, tenants having control over where they live and who with, their support and how they are supported, and what happens in their own home (NDTI, 2015).

Sadly, the reality for many people in supported living is different. Inevitably, it is all about money. People with a tenancy can claim housing benefit or universal credit to cover the cost of the rent and use their own money or other welfare benefits to cover outgoings. The only costs a local authority normally has to bear are care costs. However, rather than set up homes for individuals with bespoke care teams, the trend has been for private providers to establish shared housing with pooled budgets and pooled care teams. The notion of choosing who you live with or who supports you has gone out of the window and the ‘tenant’ is left in what is a residential home in all but name.

At the same time, local authorities are not addressing the housing issue. Homes to meet the needs of all should be developed. The situation is worsened by the fact that the Care Quality Commission tends not to visit supported living settings because its inspectors cannot enter a person’s home without permission. They inspect the care providers at their offices instead. As a result, the protection an inspection should provide may be diluted or nonexistent and the reality of people’s situations is not seen.

The CQC does not seem to have got to grips with its responsibility to ensure that spurious supported living schemes are run correctly and should be registered. Its own Housing with Care standards say landlord and care provider should be clearly separate and that tenants should be able to choose who enters their home to offer care. However, local commissioners continue to use a model that does not ensure these rights, presumably because it is cheaper. A general lack of accountability means public employees continue to get away with it. The CQC really needs to do more to uphold people’s rights.

I do not doubt there are cases where this pseudo-model works well and that some people might choose it. I recognise and applaud that there should be choice within the system for different models of care and housing.

However, where there are guidelines and rules, these should be followed. Rights are paramount. We all need a place of our own – a sanctuary – and we need to make good housing and support a reality and not strip out the very essence of community life.

In the meantime, no doubt, our battles will continue, but we will continue to strive to ensure Jamie’s human rights are upheld. I will carry on banging the rights-based drum to fight for change. Those with the power to make change have many questions to answer. Let’s get those answers.

The Rightful Lives online exhibition can be visited at www.rightfullives.net

Julie Newcombe is the mum of a wonderful young man with autism and learning disabilities and a co-founder of the Rightful Lives exhibition

References

United Nations (2008) Convention on the Rights of People with Disabilities. Article 19 Ð Living Independently and Being Included in the Community. http://tinyurl.com/zajxuth

Paradigm (2014) The REACH Support for Living Standards. http://tinyurl.com/yyf9wuku

National Development Team for Inclusion (2015) The Real Tenancy Test – Tenancy Rights In Supported Accommodation. Revised November 2015. http://tinyurl.com/y4z8uutz

Value of work

Community Living

9 July 201920 June 2023 — Summer 2019

Value of work

Books on a person’s path into work and the benefits and responsibilities of having a job are discussed by members of LDN Connect

Glory Wants a job Roger Banks, Kathy Melling and Stephen Langley Illustrated by Mike Nicholson Books Beyond words, 68pp, £10.00 paperback, £4.95 ebook

A Good Day’s Work Sheila Hollins, Shirley-Anne Wheeler and Wayne McGregor Illustrated by Rachael Ball Books Beyond Words, 72pp, £10.00 paperback, £4.95 ebook

We all agreed that Glory Wants a Job is well illustrated in colour, very busy and vibrant, and shows people with a mix of abilities engaged in activities. Following the pictures helped us to have conversations about work and different aspects of it.

Glory wants a job and this book guides us from the very beginning of her journey when she is having conversations with her parents, through planning and until she achieves her goal and gets her dream work.

The book showed us that we need to have positive attitudes and look nice, and like working with others and learning. Also, it was very nice for us to see the characters reflect mixed ethnicity, including workers in various professional services and roles. The pictures showed that a good attitude is important.

The story is easy to read and accessible for various ages and genders to understand. Overall, we think it is a good and positive story for people in transition.

All in a day

We thought A Good Day’s Work shows good examples of employees meeting good health and safety and food handling standards in a food delivery section. Some of us have done catering so we recognised that work and what we do ourselves. The book shows us a happy customer service worker with good interaction who looked good (clean and tidy), friendly and like he was enjoying his work. We learned from the book that, when you are working, time-keeping is very important and support from friends and family is very important to succeed.

In the book, the lady started work in the hospital and did not follow instructions so was not happy as she made mistakes but, after getting support from friends and managers, she did her job well and got rewarded for it, which made her very happy and satisfied. The book showed us people of different ethnicities and ages in all different jobs, which was good and important. We also thought people looked happy and that was good to see in a workplace and helped us to think about work as a good thing to do.

However, we found the drawings in this book not as good as those in the other. The black and white drawings were not as interesting to look at. After the illustrations comes the contents page. Our facilitator was a little worried at first as the contents page usually is at the front of books, not at the back. We think the reason for this layout might be to make it more accessible for people across ages and ability. We liked it as we started the story straight away and we were each able to create a story with different words which showed our own creativity and thinking.

We would recommend this book being used in a group and 1:1 sessions, and that families, teachers and carers would be able to help if needed.

LDN Connect: www.wspld.org.uk/find-support/ldn-connect/

Beyond Words: https://booksbeyondwords.co.uk/

LDN Connect is an activity group from the Westminster Society for People with Learning Disabilities

A source of affection then shame

Susanna Shapland

9 July 201920 June 2023 — Summer 2019

The first children placed in Normansfield Hospital were were loved and cherished by their parents. Later, ‘imbecile’ children were hidden away there by middle-class families who felt deep shame. Susanna Shapland sums up research on these children by historian Deborah Cohen

At first glance, Lucy Gardner and Elizabeth Scott-Sanderson had a striking amount in common. Both were placed in the Normansfield Training Institution with a diagnosis of ‘imbeciles from birth’ by their relatively wealthy families at a painfully young age.

However, here the similarities end. The 40 years that separated their arrivals saw a sea change in how learning disabled children were viewed by their families and society from being cherished individuals at the centre of family life to a source of shame that had to be permanently buried in institutions.

Victorian optimism

Unlike illegitimate children, learning disabled children were not viewed by Victorians as a source of moral opprobrium. Instead, they were welcomed as an opportunity to do God’s work through providing treatment and care. That they could be treated was a certainty John Langdon-Down shared so, when he founded Normansfield just outside London in 1868, its emphasis was on training. Its occupants were schooled in not just speech and writing skills but also Latin and mathematics. After a few years, they returned to their loving families as ‘relieved’ or ‘recovered’, and the newspapers reported unusually high (possibly exaggerated) success rates.

In its early days, children living in Normansfield learned Latin and mathematics; the institution had its own theatre

Lucy was born in 1878, and arrived at Normansfield when she was 5 years old. Typically for that time, she arrived with a quantity of fashionable clothing, frequently replenished by her doting parents who also sent cakes and presents at birthdays – but only if they were unable to visit in person or arrange for a trip home. At home, the children were the centre of family life, and were seen running errands, helping in their fathers’ businesses or attending church. In between visits, Mary Langdon-Down answered an endless barrage of letters from parents who wanted to know every detail of their child’s daily routine. Lucy spent four years at Normansfield, and returned home to her delighted family apparently ‘much improved’.

Edwardian pessimism

By 1900, pessimism had set in. Eugenics theory warned against allowing those afflicted by ‘mental disease’ to produce children who would be similarly disabled. On this basis, amid a growing panic at the increased visibility of the learning disabled in surveys and censuses, the Eugenics Society argued for the sterilisation of the ‘mentally unfit’. One strident advocate of this was Reginald Langdon-Down, who had inherited the running of Normansfield in 1900 from his father. The parent of a learning-disabled child himself, he had a brusque nature that discouraged parents from writing, visiting or, indeed, hoping for improvement in their children.

Attitudes of parents were also changing. A growing sense of shame drove them to exclude their learning-disabled children from social events and polite conversation, pushing them into the shadows.

Secrecy

The abandonment of children and their systematic erasure from society reached its peak in the interwar years. Hereditarian theory had evolved from basic worries about ‘imbeciles’ begetting imbeciles to the belief that the ‘normal’ could be carriers of ‘mental deficiency’. Having a learning-disabled relative became evidence of a taint in the bloodline.

One poet’s fiancee imposed conditions on their marriage after he confessed to the existence of his ‘mongol’ brother. Pharmaceutical giant Henry Wellcome similarly tried to conceal his ‘slow learner’ son to protect both his reputation as a man of genius and his business.

Elizabeth was born in 1920 and institutionalised aged one. A growing desire for secrecy, fed by the stigma of having a learning disabled child, meant institutionalisation was happening earlier and earlier, and would likely be for life. Some couples did not even bring their babies home from hospital, and sent them away and tried to live the rest of their lives as if their children had never existed.

There was little hope that Elizabeth would ever return home, and her parents expressed none. Their visits were sporadic then stopped, as they ceded all responsibility for their daughter to the institution; this was typical. The Langdon-Downs had to buy their patients clothes and Christmas presents, while families wrote their abandoned children out of obituaries and expunged them from conversation.

The cost

With this shift to secrecy, places such as Normansfield became long-stay institutions where children were housed but little else. The lack of intervention or interest from embarrassed families meant there was no one to witness the increasing degradation of these places or intercede to demand those living there were treated well.

When Normansfield was sold to the NHS in 1951, it was crumbling, short staffed and packed with long-term, forgotten patients. A government inquiry after a strike by its nursing staff in 1976 revealed Dickensian levels of squalor and neglect – the true cost of decades of secrecy and shame.

Bibliography Cohen D (2013) Children who disappeared. In: Family Secrets: Living with Shame from the Victorians to the Present Day. London: Viking

We are all #HumanToo …. aren’t we?

Community Living

9 July 201920 June 2023 — Summer 2019

We are all #HumanToo …. aren’t we?

As institutional abuse continues and after the failure of Transforming Care, Isabelle Garnett started a movement – #HumanToo – to give a voice to those who are hidden away

Eight years ago, the human rights abuses at Winterbourne View were exposed by BBC Panorama.

The resulting five-year Transforming Care programme, intended to make homes not hospitals possible for those with learning disabilities and autistic people, ended in April 2019, having failed to reach its targets. There has been no significant change in the numbers of people in assessment and treatment units (ATUs). The ‘right support’ has yet to be built in the community. Health, social care and education still work in silos and people continue to reach crisis point because of unmet need.

Care has not been transformed. There is no clarity from those with the power to effect change about how or indeed whether care will be transformed at all. There are too many distressed families, including mine, whose loved ones have endured the trauma of being ripped away from all they were familiar with and those who knew and loved them best. Too many are having to call out the horror of the ‘care and treatment’ their loved ones are subjected to in ATUs. Too many deaths by indifference. Too many harrowing but all too true headlines, such as ‘Think torture only happens overseas? Look at the cruel treatment of disabled people in Britain’ in the Independent (2019).

Those with experience, those who work at the coal face and those who could and should end this know why it is happening. There have been too many case reviews, too many reports and too many unimplemented recommendations. The ‘perverse incentives’ identified by former health minister Norman Lamb remain. Those who could address these seem unmoved by Dame Christine’s Lenahan’s exhortation that ‘these are our children’ (2017).

The outrageous truth is that, while overall inpatient figures are largely unchanged, the number of those aged under 18 years with autism, learning disability or both in ATUs has doubled. It appears this is because they are seen by those in charge – and by extension wider society – as less than human. Because of their perceived differences, they are seen as less equal so less deserving of the rights enjoyed by other humans, adequate treatment, compassionate care and – in too many cases – the love and support of their families. ATUs are the last stop on the education, health and social care line.

The Independent headline points to the public’s tendency to distance themselves from man’s inhumanity to man. In reality, the good British public are distancing themselves historically, albeit unwittingly, as they back look at progress such as the abolition of slavery or the advent of voting rights for women as signs of a civilised society. We can – and must – think again about that too.

Recently, I was speaking with a couple of fellow parents about what was happening to our children in ATUs as we travelled on the London underground to yet another meeting to ask for help from those who should be effecting positive change. A woman sitting opposite us was almost incredulous. ‘Really? This is happening in 2019? In Britain?’ She was outraged and offered to write to her MP. This made me believe that most people who have no reason to know about what happens behind locked ATU doors actually do care and want to do something about it.

#HumanToo is a movement that aims to bring one of the biggest domestic human rights scandals of our time to the general public’s consciousness, giving a voice and visibility to all those who are hidden away. It is about uniting self-advocates, families, campaigners, professionals, providers and charities behind a simple demand: ‘People with a learning disability and autistic people should have what every human deserves: an ordinary life and a home not a hospital.’

#HumanToo wants to unite all the work so many of us are doing to achieve this and strengthen our voices so they are heard by the public and, by extension, those who could and should effect change.

You can help by: using the #HumanToo hashtag when tweeting about anything to do with learning disability, autism or both; and adopting the #HumanToo logo (below) as your profile picture.

Images are from www.humantoo.net
email: info.HumanToo@gmail.com
Twitter @HumanToo2
Facebook #HumanToo and HumanToo

Isabelle Garnett is a campaigner, mother of a son with autism and member of the Community Living editorial board

References

Moore J. Think torture only happens overseas? Just look at the degrading treatment of disabled people in Britain. Independent, 9 May 2019.

Lenahan C. These are our Children. Department of Health/ Council for Disabled Children, 2017

Diary: first rule of caring is to care

Community Living

9 July 201920 June 2023 — Summer 2019

Diary: first rule of caring is to care

Suzanne Gale is beyond frustrated about another unnecessary death, councils controlling people’s lives and supported living that is neither supported nor provides a good life

My mind keeps returning to the outcome of the inquest into the death of Giuseppe ‘Joe’ Ulleri at the Manchester Royal Infirmary. I just cannot fathom how he was subjected to neglect on this level.

He was surrounded by family who were clearly advocating for him and still staff failed to meet his basic needs. This wasn’t the result of cuts to funding and it wasn’t because of a split-second decision made by an overworked junior doctor. It was due to an institutional failure by the hospital to find out if he was as comfortable as he could be and whether he was hungry. Week one of medical training, I’d have thought?

This, unfortunately, is an extreme but common example of how support for people with additional support needs continues to be painfully substandard. I, like most people, am furious about the funding cuts across the sector but this isn’t about that. It’s about not caring.

Overall control of the council

Recently, I’ve been working on a project where I did a whistle-stop tour around some supported living services to assess whether they were fit for purpose. In short, they weren’t. I saw a huge lack of understanding and awareness of the Care Act and its intention within the very institutions that have been given the responsibility to give people the intended equitable quality of life. Just basic rights are not being supported.

I met one young man who had been assessed by the local authority as not having capacity to manage his money, who told me he was no longer allowed to have his bank statements posted to him in case anyone else in his home, including his chosen support staff, sees them. They now go straight to the council team that manage his money. He’s sad about this as he used to like opening his post and keeping the statements in a folder. I met him for only 10 minutes and this was one of the things he wanted to tell me about. It meant a lot to him and his basic, perfectly reasonable wishes were being completely ignored. If a family member were acting in this way, we’d challenge and raise formal concerns, but it appears that random council staff – there was no named person, just a team – can make this decision without question.

Back to the 1950s

In some authorities, there appear to be entire systems in place to keep adult residents as powerless as possible.

<< One service was deemed ‘outstanding’ yet personal records were kept in an unlocked cabinet in a communal area >>

Many of the residents I met recently get an allowance that has not changed for years and everyone gets the same. It is not related to how much they want to spend or save. The council also decides how much is allowed for ‘housekeeping’ as though the home is run by a 1950s housewife. This sum is not just for a general kitty for toilet roll and washing-up liquid as you’d find in other shared houses but for all the food in the house, including tea, coffee and snacks for staff.

Councils often give a set amount of ‘housekeeping’ money to residents, as if their shared homes were run by a 1950s housewife

What if I don’t want to fund my housemate’s cheese addiction or my support worker’s 10 cups of tea a day habit? What if I want to spend my money on ready-made M&S vegan meals instead of having a weekly house barbecue every week or paying for Sky? There’s just no scope for person-centred choice.

Supported? Living?

To add to the idiocy, I continue to pull my hair out at the lack of understanding by Care Quality Commission about what supported living really means.

One service that I visited had been deemed ‘outstanding’ yet peopleÕs records, including files with all of their personal information, were kept in an unlocked cabinet in a communal area and support staff were cooking all of the meals and doing the cleaning for a perfectly mobile and capable group of residents. I guess the CQC assessor had been distracted by the well-manicured garden and the pictures on the wall of people having a nice day out several years ago (not the current residents, obviously).

I am beyond frustrated not just because this poor provision exists but also because no one was shocked by what I found. Or, seemingly, inclined to change anything.

Pain is part of a normal life

Well done again BBC’s Call The Midwife. Reggie (Daniel Laurie), who has Down’s syndrome, has held some strong storylines over the years and, while living in a supported community, still comes home regularly to visit his family. In the last series, Reggie announced that he has a girlfriend. His family worried about him getting his heart broken but his uncle said: ‘No one can go through life without experiencing any pain at all.’ Hear, hear. Let Reggie try and maybe fail like the rest of us.

Suzanne Gale is a consultant who works on projects to improve housing, employment and lifestyle options for marginalised people

More stories about: Housing Supported Living

Crisis and the long journey back

Community Living

9 July 201911 November 2024 — Summer 2019

Photo: Lloyd Family

Crisis and the long journey back

When a support service was withdrawn for her sister, it was catastrophic. Jane Lloyd describes how loss of control led to crisis and an arduous road to recovery

A year ago, my 55-year-old sister, who is deaf and has severe learning disabilities, was detained in hospital for six months under the Mental Health Act. It was an incredibly frightening time for her and our family.

I decided to write about my sister’s mental health crisis because her experience highlights the devastating emotional impact of losing choice and control over how care and support is provided. Her experiences also illustrate the many challenges faced by people with learning disabilities when they develop serious mental health problems. I have chosen not to share her identity or the services involved as she is not able to fully comprehend the implications of consenting.

We believe the antecedent to my sister’s crisis began in November 2017, when she was told that sleep-in staff would be withdrawn from the home where she had lived for 11 years. She was shocked and very upset by the news, and confused as to why the support was being stopped. The care staff tried to reassure her, but that did not help quell her worries. As an alternative to sleep-in staff, a telecare alarm button system was installed in her bedroom that would give her access to a staffed monitoring service. She was told that she should use the alarm if she needed help at night, once the sleep-in staff had been withdrawn. Given that my sister is deaf, the telecare system was not accessible to her, as it relied on her being able to hear the staff on the other end of the system.

Crisis

Because of the way her disabilities affect her communication, she needs person-to-person contact. This is especially important if she is in crisis.

I told the service manager and reviewing officer that I was seriously concerned that if she remained distressed by the withdrawal of sleep-in staff, her mental health would deteriorate. It seemed that because of her learning disability she was being offered no choice or control over the support she needed to feel safe in her home.

<< She was abandoned by social care services, and we were left to support her, while trying to access specialist services>>

By May 2018, her mental health took a serious turn for the worse. Support staff told us that she was very confused Ð not changing clothes, not sleeping and packing bags when she was not going anywhere. This was completely out of character for my sister.

During a weekend visit to my house at the time, I was shocked and very concerned by the drastic changes in her presentation and behaviour. She was frequently tearful, and appeared very disconnected. She presented as flat, disoriented and anxious. She repeatedly asked me where she was going to sleep. She communicated very little with us – and hardly at all when we went out. She has always been very gregarious in interacting with people. She appeared to have very little interest in connecting with us or people she met outside.

Despite the seriousness of these changes in her presentation, and us asking for an urgent specialist assessment, care providers and social care staff were slow to respond. Eventually she was admitted onto a general medical assessment ward in the local hospital to rule out any physical causes. These were ruled out within a day and the doctor informed us that she was ready for discharge.

Her local authority reviewing officer, however, informed us that she could not be discharged as care staff in the residential home could not manage her behaviour, and that there were no alternative community mental health support services.She was effectively abandoned by social care services, and we were left as a family to support her, while at the same time trying to access specialist help.

During the hospital stay, she was in a distressed and agitated state, and repeatedly tried to leave the ward. Ward staff were extremely supportive, but it was the wrong environment for my sister to be in. My sisters and I stayed with her for the four days she was there, sleeping in a chair by her bedside overnight.

A better place but still detained

Eventually, with the support of a specialist learning disability liaison nurse, my sister was assessed and sectioned to a specialist NHS learning disability assessment and treatment unit. We were enormously relieved that she was at last in an appropriate NHS setting – we felt fortunate that a bed was available (one of only eight on the unit). However, it was very frightening to know that she was being detained. She was diagnosed with post-traumatic stress disorder and depression on admission. We were very impressed by the way the team on the unit supported her from the start. Their professional training and understanding of learning disabilities and mental health ensured the care and treatment she received was appropriate.

They demonstrated a strong commitment to working in a person-centred way, with an emphasis on building supportive relationships.Section 17 leave was agreed so that we could take my sister out of the hospital on visits. The ward manager arranged for a nurse who used British Sign Language to visit her regularly to support her communication.

<< We were relieved she was in an appropriate NHS setting but it was frightening to know she was detained >>

We were also reassured that the psychiatrist responsible for her ensured the community multidisciplinary team were planning towards going home from the time she was admitted.

It was a very traumatic time, however, as my sister was very unwell. She did not understand why she could not go home, the hospital and staff were completely unfamiliar and the unit was 50 miles away from her home. I visited once or twice a week, which constituted a round journey of 270 miles. I have horrible memories of my sister shouting my name each time I left because she wanted to leave with me.

It was clear that the unfamiliar environment and my sister’s deep wish to go home were hampering her recovery. In September, with the hope that her recovery would be hastened in her own environment, the psychiatrist proposed that section 17 leave should be used to enable my sister to go home, with support from the specialist community mental health team and ongoing support from the clinical team. My sister was told at multidisciplinary team meetings in September and October that she would be going home.

Delayed return

Despite these promises, the discharge process was frustratingly prolonged and delayed: first, by disagreements around who would fund the section 17 leave; and then by a devastating last-minute decision by the providers. The local authority wrote to us to say that she could not return home because the providers thought it would be best for her to wait for them to secure a new property, as her home was being decommissioned.

They said that my sister would need to stay in hospital until the new property was ready (potentially 3-4 months from then).This suggestion went completely against the professional multidisciplinary team’s care and treatment plans. At that point, I contacted a specialist solicitor to act on my sister’s behalf and support her right to return to live in her own home until the new property had been purchased. This is what she said she wanted to do.

At the end of November, my sister eventually returned home. Her recovery has been slow. She had lost trust in everyone and, for a long time, believed she would be taken back to the hospital unit. She spent a lot of time in bed. Initially, her care staff expected her to present as she had done previously – it took them time to learn that my sister’s recovery needed to happen at her pace and in her way.

Last week, I attended her first review in her new property where she has been promised a home for life. She shares a house with two other people with 24-hour staff support, including sleep-ins. My sister is making a slow, steady recovery. Since discharge, she has received excellent community-based support, including from a psychologist who is helping her manage anxious memories and worries about returning to the unit.

The Transforming Care strategy for People with Learning Disabilities states that hospitals are not homes, and that people need the right support and opportunities to recover in their own communities. For my sister, residential care is a positive choice – it provides her with familiar staff who are giving her the emotional security, support and opportunity to continue her recovery.

Experiencing the sectioning of my sister was very frightening. As a social work academic, I have knowledge of the law and policy that allowed me to advocate for her to some extent. Many people with learning disabilities who are sectioned will not have relatives who feel able to challenge poor decision making. This increases the risk of decisions being made that are harmful and undermine recovery.

Coercion – when your home is not quite your castle

Belinda Schwehr

9 July 201920 June 2023 — Summer 2019

A court’s decision to protect a vulnerable but not incapacitated adult from someone living with them could have implications for families who have a ‘challenging’ person in their home, says Belinda Schwehr.

Douglas Meyers, a gentleman of 97, has made some legal history, regarding safeguarding obligations in cases of capacitated risk-taking where a person is involved codependently with another.

He has been told he cannot allow his son to live with him in his own home, because of the effect of the son’s influence on his safety – despite the father retaining the presumption of capacity as to where he himself should live.

This development matters to any family determined to cope ‘no matter what’ with adult offspring at home who are seen as presenting ‘challenging’ behaviour. The process used in this case and its outcome provide some calm leverage in safeguarding negotiations, so it is important for staff and families to be aware of the legal framework. The case also extends the scope of safeguarding obligations beyond mere Court of Protection processes when the carer is the greater focus for concern but cannot get over their sense of duty to their relative.

The judge refused the declaration sought by Southend Council that it had discharged its responsibilities to Meyers and suggested further steps were intrinsic in its duties. He exhorted the council:

‘I regard it as intrinsic to the council’s duties here actively to promote the reunification of this family to support the care arrangements … The wider family may be able to unlock the unhealthy interdependency between Meyers and his son, given the time, the space and the support to do so.’

The meaning of ‘respect’ for family life in article 8 of the European Convention on Human Rights (ECHR), and the duty to promote wellbeing in the delivery of Care Act functions are excellent justifications for any council taking proactive steps, such as:

Paying for mediation or non-statutory advocacy
Using section 222 of the Local Government Act 1972 to bring proceedings to at least suspend a licensee’s occupation rights, in the authority’s own name, if the owner cannot be persuaded to do so.

Background

Meyers was 97, blind, and had diabetes and osteoarthritis. He had long allowed his son to live with him, and had promised his deceased wife he would look after him.

<<The case extends safeguarding duties when the carer is the focus of concern but cannot get over their sense of duty>>

His son was addicted to drugs and alcohol and often behaved intimidatingly; around 10 care companies had withdrawn their services because of this and the condition of the property. The father understood the consequences and did not manage or control the son’s behaviour. Other adult offspring had given up and become estranged.

In March 2017, injunctions were made prohibiting the son from behaving in an aggressive or intimidating manner towards professionals attending the property or from impeding or interfering with any works to it. Extensive renovations were carried out to make the home habitable again; both of the men moved out during the works then returned. However, Southend continued to encounter difficulties in providing support because of the problems associated with the son’s behaviour.

One agency agreed to become involved again, but only if the council provided personal safety devices for the care staff. After a month, the agency felt unable to continue and council social workers stepped in to provide weekly welfare visits (because there is at the very least a duty to monitor even if it is not possible to do anything else). There was further intimidating behaviour by the son towards the social work staff and the property started deteriorating again.

By June 2018, the council declared that, having reasonably done all it could to provide the father with care, it should be discharged from all duties owed to him. A meal would be delivered daily, and he could contact the council and seek assistance if he wanted. This device is open to any council but very rarely used.

In September 2018, the father was found on his bed with no mattress or sheets, surrounded by flies, blood, food, faeces and clutter. He was cold, in pain, had been without food or drink for several days and was hallucinating. He was eventually persuaded to go to a care home by ambulance.

Legally, it was arguable that, as a result of his age and increasing infirmity, he had lost capacity to make decisions about his residence. An ex parte order was granted requiring him to live in residential care provided by the council, pending further order of the court. In October 2018, he agreed to abide by the courtÕs order; he maintained that he was content not to return home, not to live with the son, and to submit to a capacity assessment.

The council helped him prepare a termination notice for the son’s licence to reside at the property, which was served on the son but not enforced. The son remained at the property. A psychiatrist confirmed that Meyers did have the requisite capacity to make decisions on where he should live, including whether the son should live at the property.

In December, the urgent applications judge heard evidence and submissions on capacity and enabled the father to participate in proceedings by telephone. The judge was critical of Southend, but only as the case had become urgent because opportunities for more timely and reflective intervention had been missed.

The council endorsed the view of Meyers’ advocate that his relationship with his son was ‘codependent’. Meyers told the judge that his son was ‘basically a good lad’ and that ‘he was not as bad as people made out’. The judge summed up the position by saying that Meyers had a ‘real resolve to live and thrive’ with an ‘unfailingly positive’ attitude and, despite his physical limitations, ‘engages with the world and the issues of the day’. He added: ‘There are times when Mr Meyers is vociferously critical towards his son … There has been at least one occasion when Mr Meyers has locked his room to keep his son out. He effectively asserts his own autonomy by protecting himself’.

The judge nevertheless maintained the injunction until any further order was made, binding him not to live in his own bungalow nor to live with his son, and to stay at a care home specified by the council. The Court of Appeal refused permission to appeal against that interim order, and ruled that such orders could be deployed for the protection of vulnerable adults, even if they were not incapacitated by mental disorder or mental illness, if it was reasonably believed they were under constraint or subject to coercion and therefore deprived of the capacity to make the relevant decision, make a free choice or consent. Where the influence is that of a parent or other close and dominating relative, it may be ‘subtle and powerful’ and ‘very little pressure may suffice to bring about the desired result’.

<<Where the influence is that of a close relative, very little pressure may suffice to bring about the desired result>>

The implications of this case are:

In such circumstances, the court is bound by the ECHR and its case law and must only impose orders that are necessary and proportionate, and have proper regard to personal autonomy
In certain circumstances, it may be appropriate for a court to take or maintain interim protective measures while carrying out all necessary investigations
In an emergency, someone may be deprived of their liberty in the absence of medical evidence of mental disorder without infringing the EHCR.

This man was a vulnerable adult on this footing and unquestionably in need of protection. So, by December, expert evidence of his capacity notwithstanding, there was prima facie evidence of an unsound mind by reason of his infirmity and other ‘extraneous circumstances’.

People found not to be of unsound mind cannot be detained in circumstances that amount to a deprivation of a liberty, but a move home in these circumstances was something that required very careful planning and support, and delaying that by injunction was entirely consistent with the man’s overall human rights.

Final hearing

A final hearing was held in February 2019. The outcome was that Meyers was prevented from living with his son and the son’s contact with him was restricted. The orders needed would restrict Meyers’ choices, but not his liberty; the son’s influence was disabling the father from making a truly informed decision. Returning home without appropriate care would put the father’s life in jeopardy because, even if there was no clear evidence of the son forcing his father to act against his will, ‘the intensity of this relationship occludes Mr Meyers’s ability to take rational and informed decisions’.

Meyers was effectively compelled to evict his son from home or would be unable to return there at all. This was not inconsistent with his human rights, because, the court noted, it was evident that Meyers was determined to keep well and continue living, and his life would be jeopardised by going home without an appropriate package of care while his son remained there. The judgment spoke of the ‘needy, irrational and frequently out of control’ son exerting an ‘insidious and pervasive’ influence on the father, who clearly loved him. The relationship between the two had become ‘so enmeshed that the autonomy of each has been compromised… In reality, the son exerts an influence over his father which is malign in its effect if not in its intention. The consequence is to disable Mr Meyers from making a truly informed decision which impacts directly on his health and survival.’

The son’s treatment of his father was described as ‘not merely … neglectful but abusive and corrosive of his dignity’. For this reason, the court’s decision to encroach on Meyers’ personal autonomy was ‘a justified and proportionate intervention’.

The judge added ‘the preservation of a human life will always weigh heavily when evaluating issues of this kind’. He concluded: ‘Mr Meyers may live in his own bungalow, with an appropriate package of supportive care, conditional upon his son’s exclusion from the property’, and this restriction on his autonomy was proportionate with regard to his rights under article 8 of the ECHR, concerning respect for private and family life.

Southend-On-Sea Borough Council v Meyers [2019] EWHC 399 (Fam) (20 February 2019) www.bailii.org/ew/cases/EWHC/Fam/2019/399.html

More stories about: Adult social care Capacity Safeguarding Social care law

Meet the conditions to avoid cuts

Charlie Callanan

9 July 201920 June 2023 — Summer 2019

Receiving some benefits is conditional on carrying out certain activities, and not doing this can result in benefits being cut. Charlie Callanan explains ‘conditionality’ and what is involved

A critical feature of certain benefits for people of working age is ‘conditionality’. This concerns mandatory activities that some claimants must do to receive benefit. Failure to meet conditions can lead to sanctions, meaning that some of their benefit is cut.

Universal credit (UC) and employment and support allowance (ESA) are the two benefits that people with a learning disability are most likely to claim. They are used to top up their earnings, to replace earnings where they are not in work and to help with their rent. The conditionality regimes that apply in UC and ESA are described below.

Note that if a claimant gets new-style ESA (which has replaced contributory ESA for new claimants), they come under the UC system. Therefore, they will be subject to the UC conditionality that is most appropriate to their circumstances. If a claimant has ‘limited capability for work-related activity’, they have no work-related requirements, so they do not have to meet any responsibilities while claiming UC or ESA.

In claims for UC, there are various other circumstances in which a claimant will not have to meet any conditionality. These include where a claimant receives the carer’s element or is providing care for a severely disabled person for at least 35 hours a week, or if they are being paid a wage above their earnings threshold. This threshold is based on what the claimant would earn if they worked for 35 hours a week at the national minimum wage (currently £287.35 per week if the claimant is aged 25 years or over).

Interviews about future work

People who claim UC and have limited capability for work (ie they are deemed not fit for work for now but should look towards working in the future) must take part in work-focused interviews and work preparation. Work-focused interviews (WFIs) are periodic interviews between the claimant and their work coach to discuss plans and opportunities for returning to work, now or in the future. This may include identifying job opportunities, training, rehabilitation or other activities that could help the claimant to become readier to take up employment.

Health ‘conversations’

There is an additional WFI called the work and health conversation, aimed at people with long-term health conditions and disabilities. The Department for Work & Pensions (DWP) describes this is as ‘a discussion between the claimant and their work coach to identify voluntary actions the claimant can take to build their confidence and motivation’. It includes a discussion about the claimant’s skills, abilities and goals, as well as the support available to help them move closer to work. This should take place at around week four of a claim. Although a claimantÕs benefit may be sanctioned if they fail to attend, any actions agreed during the interview are voluntary.

There is also the ‘work preparation requirement’, which involves the claimant preparing to move into work, taking on additional work or finding better-paid work. Action to get ready for work could include attending courses, preparing a CV or taking part in the DWP’s Work and Health Programme (www.gov.uk/work-health-programme).

Work-related activity

Many people with learning disabilities who are not in work are claiming old-style ESA under the pre-UC system. If they have limited capability for work, they will have to carry out work-related activity, along with attending WFIs (see above). This is similar to the work preparation requirement, and involves activities to improve the claimant’s employment prospects, such as attending training courses, skills assessments and work placements. It is important to note that the conditionality detailed above does not require claimants to apply for jobs or take up work as a condition of their claim. However, claimants can be sanctioned and have their benefit reduced for failing to take part in any mandatory activity.

UC claimants who do not fall into a category of people with a restricted ability to take up employment, such as those with limited capability for work or caring responsibilities, are likely to have to meet all of the work-related requirements. They will have to look for and be available for work, usually full-time employment of 35 hours a week. The rules are similar to those for receiving jobseeker’s allowance.

<<The conditions for claiming benefits have become tougher, and the penalties for not meeting them can be harsh>>

However, some claimants do not have to meet the threshold of finding 35 hours of work a week in certain circumstances, including if they have physical or mental health problems or caring responsibilities. Even if a UC claimant is in paid employment, they may still be subject to in-work conditionality. If their pay is below their earnings threshold, they may have certain requirements imposed on them, such as to try to increase their work hours, find additional work or find a job with higher earnings.

For many claimants, the conditions for claiming benefits have become tougher, and the penalties imposed for failing to meet such conditions can be harsh. Clients should try to ensure that any conditionality imposed on them is appropriate to their circumstances, and that if they are sanctioned for failing to meet any requirements, they should seek advice urgently.

Charlie Callanan is an adviser and writer on welfare rights

<<The conditions for claiming benefits have become tougher, and the penalties for not meeting them can be harsh>>

More stories about: Benefits Welfare rights

Letters

Community Living

9 July 201920 June 2023 — Summer 2019

Being disregarded tells people they are not valued

I wonder how many of you have ever felt excluded in the playground, within your family, at work or at a party?

My daughter Rachel was excited for her review and had bought a tin of biscuits for everyone to share. I watched as everyone was offered a cup of tea … except Rachel. Rachel’s eyes darted to invitations for tea that excluded her. We sat down and, just as the first person spoke, I interrupted and asked: ‘Excuse me. Would it be possible for Rachel to be offered a cup of tea?’

No one had noticed that Rachel was the only person who had not been offered a cup of tea or coffee. I wonder how my daughter and other vulnerable people feel, having incidents like this happen to them many times a day, every day of their lives?

I am sharing this story because such incidents have happened to Rachel throughout her life. I can only imagine that being excluded makes her feel of no value to herself and society. What unspoken messages are transferred to a person who is continually ignored and disregarded? Imagine being the only person in the room excluded by people who are being paid to support you. Who is really seeing and valuing the person for whom they are working?

We have to ask: how does someone with a learning disability and autism retain confidence, self-esteem and self-respect while continually being excluded and marginalised throughout their lives? When ‘challenging behaviour’ occurs, professionals write their recommendations and reports; I would suggest that it is the conditions our children are living in that are challenging – conditions over which they have no control or power – and they have no other way to let you know how this makes them feel.

This simple incident has left me feeling both scarred and scared. Scarred because it is yet another incident of well-meaning people ignoring Rachel, in addition to the many similar incidents over many years involving staff, family and society. My mission was to ensure Rachel was included, involved and valued so she could lead a productive and fun life. Sadly, I am failing. This has left me feeling very depressed and disheartened for her future.

I feel scared because who will speak up for Rachel when I die? I will only be able to die in peace if I know that my daughter is truly valued by the people around her. Finally, when are organisations going to put their values into practice in everything they do? At the review when the incident occurred, four senior managers from her service (principal social worker, manager of residential services, operational manager and supported living manager), a London Borough of Barnet social worker, two advocates and mum were present. When are all organisations going to truly value the people they are employed to serve?

Linda Edwards MBE Barnet, Greater London

See people as friends to curtail abuse

I believe one simple instruction could be given to staff that would prevent horrors like those at Winterbourne View and Whorlton Hall: treat each person you support as your friend.

Yet up and down the country, staff are being told you should never befriend someone in your care, never give the person a hug, never share personal information about yourself and never ever invite the person to your home. The result of this policy in extreme cases seems to be that a few staff come to regard some people they support as an enemy to be challenged and controlled at all times.

We need to get back to the positive view of relationships espoused by wise pioneers like Rudolf Steiner, Jean Vanier and John OÕBrien. Friendship and life sharing are safeguards against abuse, not risk factors as policy seems to view them.

Paul Williams Trowbridge, Wiltshire

Lots to read

We’re all absolutely delighted with the book reviews and the Belong manifesto article in the latest issue of Community Living (spring issue, pages 29 and 25). They are both brilliantly written, and it’s fantastic to see references to Beyond Words alongside so much interesting content – the micro-brewery piece was fascinating. Hannah Pimble Publishing and communications manager, Beyond Words, London WC2

Pride – and happy ducks

Thank you for the article about Amy’s duck food table (spring issue, page 21). It made me feel proud.

Bob Barnham (Amy’s dad) Alresford, Hampshire

More stories about: Families Letters Relationships Safeguarding