Tag Archives: social care

Rocket science and reality: The Tale of Laughing Boy

The Tale of Laughing Boy from My Life My Choice on Vimeo.

This weekend, I watched a film that should never have had to be made, about a young man who should never have died, featuring people who should never have experienced what they’ve been through.

If you follow this blog regularly, you’ve probably already seen the powerful film, The Tale of Laughing Boy, which was released on Saturday.

If you haven’t seen it then, for the reasons stressed in my opening lines, please spare 15 minutes to watch it.

Better still, watch, imagine and act, as the film’s concluding message urges its viewers.

The film is about the life of Connor Sparrowhawk (aka Laughing Boy). Connor, who had autism, a learning disability and epilepsy, was 18 when he died just over two years ago in Slade House, an assessment and treatment unit run by Southern Health NHS Foundation Trust.

He drowned in the bath on 4 July 2013, an entirely preventable death, as proved by an independent report demanded by his family. I covered the family’s experience here and if you don’t know his mother Sara Ryan’s blog, these extracts published in the Guardian reflect a little of what the family has been through.

Two years after Connor died, the family is still waiting for answers, a police investigation is ongoing and the outrage over his death has led to a powerful campaign, Justice for LB. It has also driven proposals for a new bill to boost the rights of people with learning disabilities and their families (see also this brilliant gallery featuring artwork created as part of the campaign).

The Tale of Laughing Boy should be required viewing for – well, for everyone, actually.

The issues it raises touch not just families of people with learning disabilities or people with learning disabilities themselves. The film is relevant not simply to professionals who work in health and social care or to politicians and policy makers who focus on these areas. In fact, Connor’s story begs the question of how society values (or rather, undervalues) people with learning disabilities and how we, as a collective bunch of human(e) beings, can (and should) positively respond.

The film, produced by self-advocacy charity My Life My Choice and Oxford Digital Media paints a warm, affectionate picture of Connor from childhood to young adulthood. Interviews, photographs and home movies celebrate Connor’s life as well as demanding answers about his death. It is a short, clear, accessible, arresting film – warm, beautiful, funny, and moving.

Connor’s family and friends speak with searing honesty about about the impact he made on their lives, and about the difficulty in his support (which is what triggered his admission into the unit). The teenager emerges as an engaging, entertaining, popular young character with a love of humour and a passion for music and buses.

Inspiring and amusing anecdotes show how much loved Connor was and is by his parents, siblings, grandparents, friends and support staff; one of his brothers recalls Connor’s claim that their mother was breaching his human rights by getting him to do the washing up.

Rich, Connor’s stepfather, describes the proposed new bill that the Justice for LB movement has sparked.

Rich explains that the objective is “to change the way in which the law works…At the moment local authorities and the NHS and other providers can pretty much put people where they want, what our bill proposes is that you simply will not be able to do that you will have to take full regard of the individual’s desire and wishes into account before making them a placement in residential accomodation…the bill tries to at least ensure or encourage that the knowledge, the love, the affection, the care, the experience that families have isn’t ignored by providers and is a full part of the process”

As Connor’s mother Sara says, it is “shameful” that there is a need to campaign “to give a certain set of people the same rights as everybody else”. Her son’s death, she adds, was terrible, wasteful, careless and preventable.

I wasn’t able to attend the launch of the film but Kate at My Life My Choice was kind enough to ask two of the contributors to the film, Tyrone and Shane, both of whom have learning disabilities, for their thoughts so I could add them to this post. Tyrone said: “Connor was a happy person – always talking about buses. I feel sorry that he died and wish it didn’t happen.” He also said that “taking part in the filming was fun.” Shane just wanted to reiterate “It’s terrible that this happened.”

In the film, it is another My Life My Care trustee, Tommy, who makes a powerful statement of the obvious; someone with epilepsy should never have been left alone in the bath. He says simply: “It’s not rocket science”.

* You can read more here and follow the Justice for LB campaign on Twitter.

People with learning disabilities are not scroungers or superheroes

The MBE recently won by Shaun Webster is, he says “two fingers” to the bullying colleagues who tormented him when he worked in a warehouse some years ago.

You can’t disagree with the 43-year-old’s use of frank language – his deeply unpleasant workmates once used sticky tape to bind Webster, who has a learning disability, and stuffed a rag in his mouth. This was done “as a joke”, he recalls in an interview I did for today’s Guardian. Little wonder he has devoted his life since then to fighting for inclusion and equality.

As explained in today’s piece, the international project worker for Leeds-based human rights charity Change is a sought-after speaker and trainer in the UK and overseas. His work includes advising government departments about inclusive employment, promoting access to sex and health education for learning disabled people and recent visits to Thailand and Croatia to train health, social care and charity professionals about independent living and disability rights.

Shaun talks passionately and persuasively about issues like employment rights and independent living for people with learning disabilities, making the point (usually missed by policy makers and politicians) that the two issues must be seen together; earning your own money and having a role and responsibility supports independence.

Shaun’s current work involves a partnership with children’s charity Lumos, supporting young people to leave institutions and gain independence, choice and control. Linked to that piece of work is the report Shaun wrote, Leaving Institutions, a really great example of a publication written with a clear focus on people (not targets or statistics, or a homogeneous mass) by authors who truly know about and have experience of what they’re talking about.

The entire interview can be read here and the film below is worth a watch too:

The role of siblings in the care of disabled adults

Anila Jolly and her older brother Sunil pictured recently
Anila Jolly and her older brother Sunil pictured recently

I’m so grateful to Anila Jolly (pictured above, with her brother Sunil) for speaking so frankly about her relationship with her sibling.

As she says, siblings of disabled adults are “largely invisible” to care providers, but their “insight and perspective can be valuable”.

There’s more on these issues in a piece on the Guardian’s social care network today; 1.7 million adults in the UK have grown up with a disabled brother or sister but campaigners say their support needs and caring role are overlooked.

My piece today focuses on the work of Sibs, the UK’s only charity for siblings of children and adults with a lifelong learning disability.

Sibs’ call for greater recognition for this comparatively invisible group is timely given the next tranche of welfare cuts, says its chief executive Monica McCaffrey – “people who don’t have critical or substantial need will have little or no support … siblings will have to ensure people are safe and we want them to have a voice within adult social care.”

In addition, the role of siblings should be seen in the context of Carers Week next week and the are growing calls for families to be fully involved in the care of disabled relatives (take the campaigning LB bill , for example).

You can read more here about siblings’ distinct role and how care providers and commissioners often underestimate their contribution.

Why are stroke survivors being written off?

Paul Luscombe rises confidently from his wheelchair, sets one foot in front of the other and walks steadily between the parallel bars in the rehabilitation gym of his care home.

The simple task is, as Luscombe says, amazing, given that a stroke five years ago left him unable to walk. When he moved into the home from hospital, he spent most days in a wheelchair, hunched over the weaker right side of his body.

Today the 50-year-old’s speech is limited and he cannot yet walk unaided, but he is proud of his “gradual progress” at the Peter Gidney Neurodisability Centre in Dartford, Kent. Luscombe’s care at the privately run home is funded by his local clinical commissioning group, NHS Dartford Gravesham and Swanley CCG, and the possibility that he may live independently again is, he says, thanks to the physiotherapy that is “so important” in that care.

I saw for myself how determined Paul was and how vital the role of physiotherapy is in his care when I met him last week. The full piece is in the Guardian tomorrow and online today and explains how research by the Stroke Association and the Chartered Society of Physiotherapy (CSP) shows that stroke survivors entering care homes are “written off” and not offered adequate rehab treatment.

New residents, according to the study, do not get a stroke-specific assessment within 72 hours of their admission, ignoring National Institute for Health and Care Excellence (Nice) stroke guidelines.

The hidden victims of domestic violence

Beverley Lewis House is the only refuge in the UK that caters for women who have learning disabilities. Photograph: Beverley Lewis House
Beverley Lewis House is the only refuge in the UK that caters for women who have learning disabilities. Photograph: Beverley Lewis House

Barbara Davis’s abusive boyfriend burned her fingers on the stove when he discovered her packed suitcase under the bed and realised she was trying to leave. He had controlled Davis, 36, who has a mild learning disability, for years. He isolated her from family and friends, verbally abusing her parents until they stopped visiting. He locked her in the privately rented London flat they shared, goading her to kill herself. She recalls: “He told me to strangle myself with a wire … he wanted me to die.”

Davis (who eventually escaped) told her story to researchers from the Tizard Centre as part of a project to explores the experiences women with learning disabilities who suffer domestic violence. The work, which also looks at the attitudes and practices of professionals who support such women, is featured in my Guardian piece.

There are some shocking – although perhaps not surprising (given the low profile of learning disability as an issue) – facts included in the piece. Among them, that the UK has just one specialist domestic violence refuge for women with learning disabilities. What’s more, most police officers (often the first point of contact in a domestic abuse incident) do not believe that a learning disability makes women more vulnerable to domestic violence.

You can read the rest of the piece here.

The Tizard Centre project can be accessed here and information on Beverley Lewis House here.

Art show celebrates diversity

Painting by Chantelle Bellinger, from the Nexus art group, Surrey.
Painting by Chantelle Bellinger, from the Nexus art group, Surrey.

The graceful depiction of birds, above, is among the art works on display in a new exhibition celebrating diversity.

I’m sharing some of the pieces here because I was taken by the broad range of subjects and contrasting styles of the artists. Most of the pieces are inspired by nature and natural landscapes.

The paintings were created by participants in the Nexus project, run by care organisation Surrey Choices, and are being exhibited at the Sunbury Embroidery Gallery until March 1 (entry is free). Nexus provides specialist support and activities for adults with physical disabilities and mild learning disabilities.

Work by Bryan Aldridge
Work by Bryan Aldridge
By Chantelle Bellinger
By Chantelle Bellinger
Painting by Marc Leosing
Painting by Marc Leosing
Artwork by Michael Somers
Artwork by Michael Somers
By Terry Prosser
By Terry Prosser

For information, see the gallery website.

Exhibition reveals hidden history of learning disability

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All images copyright Jürgen Schadeberg

Powerful and rarely seen archive images of life in institutional care form part of a new exhibition that opens today.

The history of long-stay hospitals in Wales is the focus of Mencap Cymru’s Hidden Now Heard project that documents life for people with learning disabilities in the region.

The striking shots of the long-since closed institutions include rarely seen images of Hensol Hospital, Vale of Glamorgan, taken by renowned photographer Jürgen Schadeberg in 1967.

Schadeberg’s Welsh photographs range from the surprising to the thought-provoking and the unsettling. They focus on individual faces and personalities at a time when people with learning disabilities were invisible, herded into high-walled hospitals, hidden away for years.

The images hint at stark reality of life in long-term care, reflecting some of the isolation and inactivity that were its hallmarks. They show patients in workshops and in and around the hospital grounds. However, the photographs also depict some of the positive bonds between staff and children in their care.

Hensol Castle Hospital

Hensol Castle Hospital

Hensol opened in 1930 as a “colony” for the care of 100 male “mental defectives” (standard terminology at the time) with buildings added to raise numbers 460 male, female and child patients in 1935. The move towards community care meant that patient numbers eventually reduced and the institution closed in 2003. Some of the buildings are now luxury flats.

The project provokes the public to consider how we care for and treat people with learning disabilities today.

While life in the community is meant to have replaced segregation in institutions, some 2,600 people with learning disabilities or autism are stuck in the kind of units meant to be consigned to the history books. These include assessment and treatment centres run by the NHS and private companies, like the Winterbourne View unit. The preventable death of Connor Sparrowhawk (aka Laughing Boy or LB) in one of these “waste bins of life” sparked the Justice for LB campaign and the LB Bill, demanding more rights for people with disabilities and their families.

The exhibition, which runs until March at Swansea Museum, is based on oral history testimonies from people who lived in hospitals, their relatives and staff, and is run by and funded by the Heritage Lottery. All the stories from across the region will eventually be deposited in the archive at St Fagan’s, the Museum of Welsh Life.

Phyllis Jones, a patient at Hensol for over 40 years, said of her involvement in the project: “I wanted to tell everyone about Hensol, the good times and bad. They had good staff there but overall I didn’t like living there. I prefer living in my own house”.

Mencap Cymru, which has was involved in helping close many of the area’s hospitals, spent three years researching the project. It wants to record and acknowledge the stories and experiences of former patients and offer people a chance to talk about the past.

Mencap Cymru director Wayne Crocker said of the exhibition: “I very much hope that those who visit will be impressed by the stories they see but more importantly will see the amazing contributions people with a learning disability make to our communities in Wales.”

Anyone recognising the people in the photos or who have stories to tell should contact Mencap Cymru.

You can find out more on Twitter @hiddennowheard or visit the Facebook page.

Campaigning new disability rights network for London

Disability campaigners in west London have long fought against cuts
Disability campaigners in west London have long fought against cuts

A new organisation bringing together disabled people’s organisations in west London has just been launched. The launch of Hammersmith and Fulham Disabled People’s Organisations Network was made on the International Day of Persons with Disabilities last week and coincided with the local authority’s decision to abolish home care charges – something that the campaigners behind the new network (Hammersmith and Fulham Coalition Against Cuts HAFCAC), has long fought for.

The new network will collaborate with the council “to ensure disabled people’s involvement in the design and delivery of new policies and programmes”. In this guest post, Kevin Caulfield, who chairs HAFCAC, and fellow campaigner Debbie Domb, explain more about the new organisation and you can read more here.

Why we launched the Hammersmith and Fulham Disabled People’s Organisations Network:
DD: Our main aims are to promote the rights of disabled people, to support local disabled people to speak up and get their voices heard and to promote the social model of disability.
KC: This is hopefully dawn of new era in Hammersmith and Fulham. We want to work in equal partnership where we can with the new council. Bringing together the borough’s disabled people’s organisations (DPOs) unites our experiences, expertise providing peer organisational support.

How the new group will be different to existing organisations:
KC: We believe it’s the first local network of DPOs certainly in London. We need more than ever to work together to defend and promote inclusion human rights of disabled people.

We believe there’s something of a “tipping point” in disability rights at the moment:
KC: We have had enough of the scapegoating, punitive policy changes pushing us back to the margins and some of us over the edge to desperation, isolation, destitution and in some cases suicide or death by negligence.
DD: In the borough of Hammersmith and Fulham, these factors were magnified as we were ‘David Cameron’s favourite borough.’ (Thankfully no longer ) Policies were implemented here prior to being rolled out nationwide. Disabled people were treated with total contempt by [Tory former council leader] Greenhalgh et al; we were laughed at in council meetings and not allowed to speak. cuts to our services were disguised as ‘efficiencies’ and we were treated as cash generators.
HAFCAC started as a grassroots campaigning group that was entirely self funded. Since then many grassroots campaign groups of disabled people have formed. Ian Duncan Smith particularly targeted disabled people as we were perceived as unable to fight back, groups like DPAC (Disabled People Against Cuts) which spearheaded actions by hundreds of disabled activists show he was mistaken.

There is a raft of issues locally that disabled people are concerned about:
KC: Nearly every aspect of our lives [concern us] but locally
· Hospital closures
· Accessible and truly affordable housing
· The breaking up of schools making inclusion of disabled students less likely
· Charging for services
· Eligibility for state support
· Cuts to standard of living, destruction of the welfare state.
· Closure independent living fund
· Taking our direct payment support service in house with no consultation
· Quality of home ‘care contracts.

HAFCAC is currently campaigning on a number of issues:
DD: Hospital closures, continuing to work with other activists with DPAC and other DPOs currently on saving ILF; we’re waiting for judgement any day now [a high court case has since been lost but campaigners are determined to fight on].

We have a vision for the future work of our new organisation:
KC: I hope we have created a new model for working effectively with a council that is different from involving us just when the decision is about to be made that we are seen as a flagship borough all over for promoting disabled people equality and starting to make it really happen. That we can expose austerity for what it is a calculated pernicious opportunity used to demonise, discriminate, worsen life chances by punishing the poor and marginalised.
DD: Finally we have a council that wants to engage and work with us, the relationship is mutually beneficial. It will be fantastic if Hammersmith and Fulham can be seen as a flagship borough for disabled people’s equality, as rather than as previously the borough who ‘put disabled residents last.’

Tianze: dreaming of home

Back home, a poem by Tianze Ni. Tianze, who has autism, lives in a specialist unit 200 miles away from his family in Scotland (pic: Nina Ni)
Back home, a song by Tianze Ni. Tianze, who has autism, lives in a specialist unit 200 miles away from his family (image credit: Nina Ni)
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The handwritten song above (typed transcript below) is by Tianze Ni, 17. For the last six months Tianze has lived in a hospital unit in Middlesborough, 200 miles away from his family in Fife, Scotland.

Tianze is desperate to be home. His parents are desperate to have him back. The local council that has placed him in the unit says there is nowhere appropriate for his needs nearby.

I mentioned Tianze’s case in a piece for the Guardian recently on the 2,600 people with learning disabilities stuck in specialist institutions miles from home (you can read more in this post too).

A report commissioned by NHS England attempts to find solutions to the problem. In addition there is a growing grassroots campaign for new legislation – the disabled people (community inclusion) bill 2015, also known as the LB bill) to prevent people from being sent to these places in the first place.

Tianze Ni, who is living at a specialist hospital unit. pictured during a previous Christmas with his mother NIna (photo: Nina Ni).
Tianze Ni, who is living at a specialist hospital unit. pictured during a previous Christmas with his mother NIna (photo: Nina Ni).

Tianze’s mother, Nina, describes the “inhuman treatment” of keeping Tianze away from home. “We are suffering day and night,” she says.

She is not alone. Leo Andrade-Martinez, for example, whose son Stephen, is also miles from home in a similar unit: “No one should suffer like this”.

The stark words of families and of people with learning disabilities are more powerful than anything I can write here.

Here are Tianze’s words; they need to be read and shared widely:

Miss home, back home, by Tianze Ni

Back home,
Back home,
Back home,

I miss home,
I dream home,
I miss mum,
I miss Dad,
My home is in Scotland…..

I miss home
I dream home.
I miss home food
I miss home family together,
I count days to back home …..

Back home,
Back home,
Back home.

* See also Tianze’s petition on Change.org, and Stephen’s.
* See here for information on the “LB Bill“, a draft private members bill that aims to boost the rights of people with learning disabilities so health or social care authorities will find it harder to transfer people to assessment and treatment units miles from home.

No one should suffer like this

Connor Sparrowhawk, who died a preventable death in a Southern Health NHS Foundation Trust unit.
Connor Sparrowhawk, who died a preventable death in a Southern Health NHS Foundation Trust unit.
Stephen Andrade-Martinez is detained in an inpatient unit 80 miles from his London home. He is pictured (right) with his brother Josh.
Stephen Andrade-Martinez is detained in an inpatient unit 80 miles from his London home. He is pictured (right) with his brother Josh.
Tianze Ni, from Fife, stuck in a Middlesborough inpatient unit miles from home.
Tianze Ni, from Fife, stuck in a Middlesborough inpatient unit miles from home.

It is now three years since the abuse inflicted on people with learning disabilities at Winterbourne View highlighted the desperate need to get people out of such institutional settings.

In those three years, we know of two people who have died in these kind of assessment and treatment units since then (Connor Sparrowhawk, pictured at the top of the page, and Stephanie Bincliffe). Many more – Tianze and Stephen (also pictured above) among them – are still being placed by health and social care authorities in such places.

The “abject failure” to move people out of these woeful environments is clear. The piece in today’s Guardian looks at this issue, including a report today by Sir Stephen Bubb, Winterbourne View – Time to Change and the momentum for change driven by families and campaigners.

Assessment and treatment centres are inappropriate institutions, modern day versions of the prison-like settings we thought we’d dismantled years ago – holding pens in which to warehouse some of society’s most vulnerable people.

Read that first sentence again – two people died (they had no life-threatening illnesses) in a clinical environment where they were placed for care, assessment and treatment – and ask how it is possible that we can let this happen?

Why “we”? Because of the collective responsibility: public and private sector funders enable these places to be created; health and social care providers run them; commissioners place people in them; politicians and policy makers seem unable to hold anyone to account for them; there is little mainstream interest media reporting in this area and the public – beyond shock at the odd high profile headline – is generally apathetic.

The fact that there have been two deaths in the three years since we’re meant to have eradicated these kinds of places is starkly made by Sara Ryan in today’s Guardian. She describes such units as “waste bins of life”.

Sara’s son Connor Sparrowhawk (aka Laughing Boy or LB) died a preventable death last year in a Southern Health NHS unit, and the widespread outrage that followed created the Justice for LB campaign with the related 107 Days drive, and draft disability rights legislation in LB’s name, the LB Bill.

It’s hoped that a green paper in February next year will reflect some elements of the bill.

Disability and human rights barrister Steve Broach, who is helping to draft the bill alongside Connor’s parents (Sara Ryan and Richard Huggins), Mark Neary and George Julian, says the project is using social media to galvanise a diverse community, including people with disabilities, professionals, families and academics. “We’re trying to crowdsource changes to the law – people are patronised and it’s wrongly assumed that disabled people and their families cannot understand their legal rights,” says Broach.

Kevin Healey, campaigner for autism rights who has supported three of the families mentioned in the piece today, says that people are effectively “penalised for having a learning disability or autism”. He says the successful campaigns to return people home are vital, but rare.

Healey adds: “It’s like we’re going back to the days of the 1940s when people with autism used to be institutionalised, but this is the 21st century.” Healey warns that where the authorities return people home, it is important to protect and preserve any new community-based packages of care amid the sweeping welfare cuts.

One mother, Leo Andrade-Martinez, told me of the son she is campaigning for (Stephen has been moved 80 miles away from home and restricted to a two-hour weekly visit from his parents) that “no one should suffer like this”.

Her words are horribly familiar to anyone interested in disability rights.

For more than 20 years – from 1993’s Mansell Report to the 2006 Our Health, Our Care, Our Say white paper, it’s been clear what “good looks like” when it comes to supporting people with learning disabilities. But still, seeing it in practice is the exception and not the rule.

You can read the full piece in The Guardian here.

Links for further reading:
* Petitions for Tianze Ni and Stephen Andrade-Martinez, both in units miles from their families. Website for campaigner Kevin Healey involved in the family campaigns.

* New Justice for LB website from where you can access different parts of the campaign and the latest updates, including news on the private members bill for disability rights

* The story of how the LB Bill is being shaped through crowdsourcing