Tag Archives: social care

Abuse, Disability, Learning disability, Social care, Social exclusion, Third sector, Uncategorized, Young people

Exhibition reveals hidden history of learning disability

January 19, 2015 Saba Salman Leave a comment

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 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.

Community, Cuts, Disability, Local government, Social care, Social exclusion

Campaigning new disability rights network for London

December 11, 2014 Saba Salman Leave a comment

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.’

Disability, Learning disability, Local government, Social care, Young people

Tianze: dreaming of home

December 5, 2014 Saba Salman Leave a comment

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)

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’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.

Disability, Learning disability, Social care, Uncategorized

No one should suffer like this

November 26, 2014 Saba Salman 5 Comments

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.

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

Cuts, Disability, Employment, Health, Social care, Social exclusion, Third sector, Uncategorized, Volunteering

No-one should ever have to feel like they are not worth helping

July 9, 2014 Saba Salman Leave a comment

Richard Turner and his volunteer befriender, Delia Jones

“No-one should ever have to feel like they are not worth helping…”

I saw these striking words on a postcard displayed at a recent event to celebrate volunteering. With the massive cuts in public spending and the unprecedented reform of welfare, it’s not hard to see why vulnerable people might think they don’t deserve any support.

The words, written by someone with experience of volunteering, referred to the vital work of London-based charity the Octavia Foundation. In full, the handwritten postcard read: “No-one should ever have to feel like they are not worth helping and Octavia does such a good job of making sure that doesn’t happen.”

The event was Octavia’s annual volunteer awards, honouring some of the 250 local people who have given their time to others through the charity over the last year. Actor Tamsin Greig presented awards to those who support work with local people affected by ill health, social isolation, unemployment or poverty.

The foundation operates in the west London boroughs of Westminster, Kensington and Chelsea, Hammersmith and Fulham, supporting older people, working with young people, focusing on training and employment and debt advice. It runs regular groups and activities as well as some inspiring one-off projects which I’ve written about in the past.

The foundation works in one of the most affluent parts of the capital, but there is much for the charity to do in the pockets of deprivation that also exist.

I helped judge the charity’s awards, reading some incredible testimonies from people who benefit from the help of volunteers.

Delia Jones, who volunteers as a befriender for example, was highly commended. Delia was nominated by Richard, who she visits and who was involved in a serious car accident almost 40 years ago – both are pictured above.

Richard’s mother Joyce Turner, 95, who also nominated Delia, explained: “What Delia does for Richard is vital. He will tell Delia what kind of book he wants, as we have a lot of different kinds and we arrange them alphabetically so she can find them. Delia seems exactly right, and we love her visits because it gives Richard such pleasure to see her. The importance of her visit every week is that he only goes out three times a week, and if its raining or bad weather, she is the only thing that he looks forward to. She never lets us down and we can trust her.”

With welfare cuts and a squeeze on public sector funding, many support services are under threat so the work of volunteers is vital in helping society’s most vulnerable people. Some of the most innovative ideas – and inspiring, unsung heroes – are found in small, community-based projects that often don’t get the attention they deserve. The recent Octavia awards are an opportunity to put that right and focus on the important work carried out in local areas.

A full list of winners and background to the awards is on the Octavia Foundation website.

Learning disability, Music & arts, Social care, Social exclusion, Uncategorized

We need to listen to the quieter voices

June 16, 2014 Saba Salman 2 Comments

Today is the start of Learning Disability Week 2014, the annual campaigning and awareness drive run by Mencap.

This year’s campaign week celebrates people overcoming adversity, prejudice and ignorance and it’s a welcome moment to focus on the positive amid the social and political inequity faced by people with learning disabilities (you can follow events and issues on Twitter using the hashtag #LDWeek14).

I’m thinking specifically of just two issues I’ve recently reported on; the needless death of young Connor Sparrowhawk and the consequent #justiceforLB campaign, and the related fact that people with learning disabilities feel ignored by politicians.

So today’s post is linked to something I’ve blogged here before, in a piece on a thought-provoking arts project run by the charity Creative Minds. There is growing – although unfortunately as yet not mainstream – debate about “learning disability arts”, and the quality of work being produced by people with learning disabilities.

Firstly, I want to share some of my sister Raana‘s artwork.

Obvious bias and sibling pride aside, so many friends and family have been genuinely surprised and impressed – and no, not in a patronising way – when I’ve revealed the creation they’re admiring has been crafted by my sister. Seriously – why would I hang crap on my walls (unless from an elephant and painted by Chris Ofili)?

She may not be a conversationalist or a writer, but pictures speak a thousand words and what she’s made is bold and beautiful. That said, Raana still produces her signature lozenge-shaped bullet cars and blobby, squat people (the hair is always spiky – a hangover from her boyband-loving days…these pieces are most definitely not on my walls), but here’s a taster of why I love what she does:

Secondly, while thinking about an art-related post, I came across some powerful pieces of work produced by members of Outside In. Based at Pallant House Gallery in Chichester, the project is a platform for artists “who find it difficult to access the art world either because of mental health issues, disability, health, social circumstance or because their work does not conform to what is normally consider as art”.

The pieces here are by artists who happen to have learning disabilities.

Aeroplanes & Spades, by Manuel Bonifacio

The works should trigger some questions about “outsider art” and the gap between the treatment of and attitudes towards people who have learning disabilities and those who do not. What the Outside In project calls “the idea of there being an ‘us’ and ‘them’”. As one of the project’s award-winning artists, Carlo Keshishian, believes that “Outside In can function as a mouthpiece to project the voices of quieter people.”

That’s what we need – more people listening to and acting on the wishes of those whose voices (and by voice I mean profile, choice, representation, status) are not as loud as those in the “mainstream”.

And finally, take another look at the photographs of the artwork on this page. Ask yourself this, if you didn’t know, how many of the pieces would you genuinely have thought were produced by people with learning disabilities?

* I can’t end this post without signposting you to the colourful creations here by “industrious artist” Connor Sparrowhawk, aka LB, currently being sold in postcard and print form to raise funds for legal representation at the inquest. Connor died in a specialist NHS unit last year and the #JusticeforLB campaign is pushing for answers about his death and raising awareness about learning disability – this letter signed by more than 500 people, explains the issues and necessary action.

Bullying, Disability, Education, Employment, Learning disability, Social care, Third sector, Uncategorized

Why is it OK for politicians to ignore people with learning disabilities?

May 21, 2014 Saba Salman

More than one million people with learning disabilities are eligible to vote – so why are they ignored by politicians?

My interview with Gary Bourlet in today’s Guardian explains how the veteran disability campaigner wants to give people like himself, with learning disabilities, a greater voice and presence so they feature in places other than “secret footage on Panorama”, referring to Winterbourne View, where the abuse of patients with learning disabilities was exposed by the BBC in 2011. To this end, he has set up People First England, to encourage adults with learning disabilities, rather than care professionals, to participate in politics and appear on TV and radio discussing stories that affect them.

“We want people speaking for themselves about issues that concern them, rather than the professionals,” he says. “We want greater powers to be seen, to vote, to be included, have the same opportunities in social life, education and employment as everyone else.” Bourlet, 55, has launched the user-led charity with disability rights activist Kaliya Franklin.

You can read the rest of the piece here while my post from yesterday adds some more context to Bourlet’s message.

Bullying, Disability, Education, Learning disability, Local government, Social care, Third sector, Uncategorized, Young people

Investigation into bullying at special school sparks questions for Winterbourne improvement scheme

May 20, 2014 Saba Salman 2 Comments

Fresh questions are being asked about the government’s beleaguered post-Winterbourne drive to improve care for learning disabled people. An investigation is underway into “bullying accusations” at a special school run by a charity whose chief executive is trying to reinvigorate the flagging £2.86m government improvement scheme.

Bill Mumford, chief executive of MacIntyre which runs Womaston School and Children’s Home in Wales, offered to stand down as director of the Winterbourne improvement programme after allegations of mistreatment at Womaston. The government programme launched after the abuse of learning disabled patients at the Winterbourne View privately run unit in south Gloucestershire, abuse that was exposed by BBC’s Panorama in 2011. It aims to move individuals out of institutional, large-scale, long-stay units and into community-based accommodation.

Concerns about the behaviour of some staff towards children at MacIntyre’s specialist residential service were reported by a member of staff to the school principal in March and police and social services are investigating the claims. The school, home to students aged aged 10-19 with autism, complex behavioural needs and learning disabilities, will close in July with the young people moved to alternative placements. Staff have been suspended, other staff drafted in and, says MacIntyre in a statement, “the alleged behaviours are not occurring in the service now”.

The investigation into Womaston is expected to last several months and there are no more details about what the allegations involve. A BBC online story refers to “physical abuse”, a statement from MacIntyre describes “concerns” about the “behaviour of some other staff members” while a personal statement from Mumford mentions “a small group of my staff…suspended following accusations of bullying”.

The incident has sparked fresh criticism of the Winterbourne programme run jointly by the Local Government Association and NHS England. It aimed to move everyone out of such assessment and treatment units by 1 June 2014 but after little progress (3,250 people with learning disabilities and autism are still in private or NHS-run settings like Winterbourne View), its previous heads left and Mumford took over in January, on secondment from MacIntyre. New NHS figures show only 256 out of 2,615 in-patitents with learning disabilities or autism have dates for transfer into community settings and more are being admitted to NHS settings than moved out.

The death of Connor Sparrowhawk recently reignited debate about the use of such units that cost around £3,500 per person per week and leave people at serious risk of neglect and abuse.

Mumford has issued a personal statement “re the investigation at MacIntyre and my continuing role in support of the Winterbourne prog” (that’s a statement taken from Twitter). In it, he accepts concerns that while he is charged with a national role to improve the care and support of learning disabled people, employees of the organisation he presides over were carrying out exactly kind of behaviour he’s trying to stamp out. He also addresses the fact the drive has been less than successful.

He says in his statement (the square brackets are mine): “It is a very real concern to me and the [Winterbourne improvement programme] partners that the trauma experienced by individuals and families at Winterbourne View and elsewhere should not be exacerbated by the thought that the person responsible for the programme [is] being tainted with serious problems in his own organisation. Indeed it is the unacceptable stories of individuals and families that motivate and challenge us all to step up and do better. Therefore my second decision was to contact the Joint Improvement Partners, including personal phone calls to the representatives of people with learning disabilities and families, to inform them of the situation and offered to voluntarily step down. This couldn’t come at a worse time for the programme partners as it is well know[n] that complexity of achieving the original concordat commitments has been a struggle.”

The MacIntyre chief executive adds that the charity took immediate action: “There has been no cover up, no prior issues of this nature have been raised before and the families and placing local authorities and alerting member of staff are all completely satisfied with MacIntyre’s actions to date. Therefore MacIntyre is dealing with a very serious situation exactly as they should – it is an example of how things should happen and maybe this is an important lesson for the programme to share.”

While the investigation by Powys social services and police continues, Mumford says he is “not only restricted about what I can say but actually what I know. However as soon as it is completed I will share what we have learnt regardless of how painful that might be.”

Discussion (so far mainly on social media) involves support for Mumford and the Winterbourne programme’s aims as well as criticism about why a statement was only made public this morning and why there was not more immediate public transparency after the claims were lodged with the relevant authorities.

*This post was updated this evening in an attempt to clarify “bullying accusations” and add figures and links relating to the number of in-patients with learning disabilities.

Bullying, Disability, Health, Learning disability, Mental health, Social exclusion, Third sector, Uncategorized, Volunteering, Young people

Charity helpline supports abuse victims with learning disabilities

May 7, 2014 Saba Salman Leave a comment

If Simon Tovey gets anxious before using the bathroom, you might assume his panic is linked to his learning disability. Maybe the public convenience is unfamiliar?

Yet Tovey’s fear is the result of the abuse he suffered at Winterbourne View assessment and treatment unit. He featured in the 2011 Panorama expose of the privately run unit near Bristol where he was kicked, punched, verbally tormented – and threatened with having his head put down the toilet.

Tovey’s mother, Ann Earley, says of her son, 40: “The Simon that returned to us was not the same one who left. He was profoundly affected and unable to put into words how he felt. He has a long-term fear of toilets – that’s just one small thing. The other impact is incalculable, like his fear about what’s going to happen next.”

Three years on from the Winterborne View scandal, the effect on residents has been huge – but a specialist helpline offers support for them and their families. Read the rest of my piece on the work of the charity Respond on the Guardian’s social care network.

Saba Salman on social affairs