Tag Archives: young people

Cuts, Disability, Health, Learning disability, Local government, Social care, Third sector, Young people

The role of siblings in the care of disabled adults

May 26, 2015 Saba Salman Leave a comment

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.

Cuts, Disability, Employment, Learning disability, Local government, Uncategorized

Cutting employment support for learning disabled people is a false economy

May 5, 2015 Saba Salman Leave a comment

Richard Ward has barely taken a day off sick since he started working 15 years ago. His friendly nature and keen eye for detail suit his role at a Boots store in Coventry, date-checking food, stacking shelves and helping customers find what they want. Ward, 33, says: “I like earning my own money, getting on well with the staff, seeing different people every day and it gets me out of the house.” Ward earns £600 a month, just over the national minimum wage.

Ward lives with his parents in Walsgrave, Coventry, and was referred to a local jobs support service by his special school; mainstream job agencies and government-run employment schemes would consider him unemployable. His mother Jane says he would be on benefits without the specialist job advice, coaching and long-term support from Coventry city council’s The Employment Support Service (TESS) for people with learning disabilities or mental health issues.

As I explain in the Guardian, while the general unemployment rate is falling, the number of out of work adults with severe learning disabilities or mental health issues who don’t have a job is on the rise. Last year, only 6.8% of learning disabled people using social care were in work compared with 7% in 2012-13. The corresponding rate for people using acute mental health services was 7.1% in 2014, compared with 7.7% the previous year.

Learning disability is not on most politicians’ radars, despite people who have learning disabilities, or who have someone with a learning disability in their immediate family, making up 10% of the electorate. A recent poll of 100 MPs by social care provider Dimensions suggests 60% do not believe that learning disabled people can be supported into employment.

However, Ward’s job is under threat, along with those of another 100 people TESS currently supports to maintain employment and the 30 it helps annually into new jobs. The Labour-run council has earmarked the nationally acclaimed 22-year-old service for closure, a victim of public sector cuts. Its future after this December is unclear.

Coventry is not unique; supported employment is a Cinderella service, not a local government statutory requirement. A 2011 poll by the British Association for Supported Employment (BASE) of 50 of its members found half face council funding cuts of at least 15% and a quarter fear 50% to 100% cuts.

The situation in Coventry has sparked worries for families of younger disabled people elsewhere. They warn that supported employment cuts are at odds with special educational needs and disability reforms aimed at raising the aspirations of future generations.

In a joint comment Sherann Hillman co-chair of the National Network of Parent Carer Forums (NNPCF) and Sue North from Contact a Family said: “Parent carers of young people with disabilities and special educational needs say fear for their child’s future is one of their top concerns. This is because young people with special educational needs and disability are less likely to find employment and live independently – and face other additional barriers as they grow up. Any threats to provisions such as supported employment schemes, will inevitably compound these fears and worries.

People TESS supports spoke in its defence at a public meeting last week organised by local unions. Among them was Hayley Archer, who has a learning disability. Her mother, Suzanne, stresses the wider impact of supported employment must be recognised: “People like Hayley are changing society’s attitudes by having a role in the workplace and by working alongside people without learning disabilities.”

Archer herself, an administrative apprentice at the council, has a simple request for her future: “I really want to keep working.”

You can read the full piece here.

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.

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, media & communication, Third sector, Uncategorized, Young people

Exhibition: how young people with a learning disability picture themselves

December 2, 2014 Saba Salman Leave a comment

Chim, in a photograph for the halow project's new art show (pic: Kitty Day) — Chim, in a photograph for the halow project’s new art show (pic: Kitty Day)

Young photographer Kitty Day, whose sister has a learning disability, wanted to to offer an alternative way for her sibling to express herself – visually.

The result is an exhibition of photographs, entitled This is me, my Voice, my Choice, involving her sister and other young people supported by the Surrey-based charity halow (sic). The show, which opens today, includes portraits of the young people where they present themselves purely as they wish. I’m sharing two of the images, of Chim and Tommy, here.

Tommy, photographed as part of the halow project's new exhibition (pic: Kitty Day) — Tommy, photographed as part of the halow project’s new exhibition (pic: Kitty Day)

Some participants also altered their images with colour or other materials (images not included shown) “to show themselves as they wanted to be seen”, says the charity which works with young people aged 16-35.

Young people from the halow project (pic: Kitty Day)

halow, based in Guildford, supports young people with a learning disability “to have the same life choices and chances as any other young person”.

“I wanted to give them the power to express their personality and who they really are, without someone trying to do it for them,” adds Kitty.“I had little control in the studio but I had even less in the editing. The project was done in two stages – one when the group visited me at the studio at City of Westminster College. The second stage was when control was totally given to them. They had a day to personalise their images through cutting, sticking, colouring – whatever they wanted, and I saw the photographs change completely and come to life…I learnt so much about the young people, their perception of themselves and the power of control.”

The exhibition also includes paintings where people depict themselves as a superhero of their choice.

* The exhibition runs at St Mary’s church, Quarry Street, Guilford, from Tuesday until Thursday – contact halow for opening times. Entry is free, says the charity, but donations would be appreciated. On Friday, the exhibition changes venue and culminates in a choir concert at Holy Trinity church in the High Street. Tickets cost £10.00 and are available from halow or tickets can be purchased from the Tourist Information Centre in the High Street.

Disability, Education, Learning disability, media & communication, Third sector, Young people

Disability: trailblazing technology vs. the computer (store) says no

December 1, 2014 Saba Salman

Products designed by disabled students using SHIVA, a pioneering 3D design and print system (pic: Livability)

Right now feels something like a pivotal moment in disability rights – and specifically for people with learning disabilities – I state this cautiously because we all know that grand plans and wise words still need to translate into deeds.

If you’ve been following the debate about turning the rhetoric of community integration into reality and the plans to tackle the failures in supporting people who have a learning disability, you’ll know there’s a massive gulf between what should happen and what actually happens; between what national policy sets out as “good practice” ideals and what takes place on the ground.

This was brought home to me not only through what I’ve been researching and writing recently, but when I was told of the experience of a group of young people with complex physical disabilities in south east London.

The group from Family Link, Bromley, a charity that offers supports outside school and at weekends, visited a computer store on a Saturday morning. They were looking forward to seeing the latest gadgets and testing some of the equipment on display.

But,they were barely there a few minutes when they were asked by a member of staff to “move on” if they weren’t actually buying anything – despite the fact that there were plenty of their (non-disabled, non-wheelchair using) peers browsing just as they were.

Computer says no.

In fact, the computer your face/body doesn’t fit – so get out.

The group leader protested but, clearly made to feel unwelcome, they left. The charity has since complained to the company, which has apparently noted its objection. Family Link is awaiting a reply. The organiser of the group says she still feels cross thinking about it several days after the event.

She’s not alone, it’s hard not to feel angry about incidents like this, where people with disabilities are made to feel inferior or unwelcome in public places – as I know and have blogged before. And how ironic that the charity had the misfortune to meet such a backward-thinking dinosaur in an evnironment championing the forward-moving digital world.

I won’t name the store here as I’ve not approached it for comment, so to point the finger at the company without offering a right to reply would be shoddy treatment (though, for the record, not as shoddy as the two fingers apparently flicked at the vulnerable young people simply enjoying a morning out).

Maybe there was a misunderstanding. Maybe it simply a rogue sales assistant who didn’t know his Disability Discrimination Act from his disk drive. Maybe there’s lax management at play that allows such attitudes to prevail.

Or maybe it’s because, as I’ve blogged before, despite years of good practice, policy and guidelines, the real pace of change out here in the real world for people with complex needs is slow.

The computer store incident is also regrettable, given what technology offers not only through its assistive form but through its educational benefits (in fact a new report today from the National Literacy Trust and Pearson underlines how touch-screen systems could tackle low literacy among boys and disadvantaged children). There’s the social aspect to technology too; something as simple as a smart phone allows easy use of text and email, for example, meaning my phone-call shunning youngest sister and I can stay in touch more easily.

This stark contrast between practice and possibility was underlined when I heard of an innovative new technology enabling disabled children to design and print objects in 3D – using only their eyes.

The SHIVA design and print system can be used by students with complex disabilities (pic: Livability)

Disability charity Livability is currently using SHIVA (Sculpture for Health-care: Interaction and Virtual Art in 3D) at its Victoria Education Centre, a school for children with physical disabilities.

The ground breaking collaborative project was created by a group including Mark Moseley, assistive technologist at the school, the National Centre for Computer Animation at Bournemouth University and researchers from the University of Lille.

In a nutshell, “eye-gaze technology tracks where a user is looking and translates it into screen coordinates so that on screen cells or buttons can be selected”. Around 15 pupils with varying levels of disability have used the software and many models have already been produced.

3D design created by "eye-gaze" technology, used by students with disabilities supported by the charity Livability (pic: Livability) — 3D design created by “eye-gaze” technology, used by students with disabilities supported by the charity Livability (pic: Livability)

The creators now hope that new funding can be found so that the software can be further developed and used by more young people.

I hope so.

More people with disabilities should – if they want to – be free to road test interesting existing and new technologies, trying out software in high street computer stores, for example, rather than being asked to leave them.

Disability, Learning disability

Janet Carr: They used to say ‘they’re never likely to walk or talk’

November 19, 2014 Saba Salman Leave a comment

Amazing, incredible, inspiring…overused words but I found myself unable to avoid using them when describing my meeting with the pioneering psychologist Janet Carr, who has just finished the world’s longest study (50 years) of people with Down’s syndrome. Carr’s life’s work has been a commitment to changing attitudes about learning disability, and in particular Down’s syndrome.

As I explain in an interview published in The Guardian today, Carr’s longitudinal study began with 54 babies born in the year to November 1964 and living with their families in a part of south-east England. Carr’s aim was to establish the children’s educational needs using intelligence tests such as pattern-matching. The research, which began when the babies were six weeks old, was conceived by the Medical Research Council psychiatric genetics research unit at London’s Maudsley Hospital. It was initially intended to last just 10 months but the young researcher wanted to look longer term and explore family interactions.

“I thought, as well as looking at how the little people are, I’d like to look at how it affected their families. It was widely accepted that having a baby with a disability meant that it would be a disaster, that families would break up. That’s what I expected to find,” she recalls. In fact Carr discovered that, while the babies’ development was slower than their non-disabled peers, families coped well as the children grew, with youngsters bonding and developing good relationships with their brothers and sisters.

You can read the rest of my interview with Janet Carr here.

Health, media & communication, Mental health, Older people, Wellbeing, Young people

My campaign to change attitudes, one event at a time

October 24, 2014 Lol Butterfield

We have just ‘celebrated’ World Mental Health day (10 October). I, and many like me, hope that as each year passes so does the stigma and discrimination of mental health. Stigma impacts like a disease – if left untreated, the result is devastating.

Attitudes are certainly changing around mental health, although slowly. As pointed out by Time to Change, the mental health campaign I’m involved in, perceptions are changing. The National Attitudes to Mental Illness survey shows that since 2011, an estimated two million people – or 4.8% of the population – have improved attitudes towards people with a mental illness.
In addition, the data suggests that more people are acknowledging they know someone with a mental health problem (64% in 2013 compared with 58% in 2009). However nearly half (49%) of respondents said they would feel uncomfortable talking to an employer about their own mental health.

Anti stigma work has taken up a large part of my life in psychiatric nursing. And, although it sometimes feels like two steps forward and one back (as the research quoted above hints), the long and winding journey is worth the taking and the rewards are for the benefit of everyone.

I have seen the impact of stigma. I have also felt it. I have seen the destruction it causes people who experience mental illness and their loved ones. This is the motivation for my work.

The recent news about the impact of isolation underlines the need for more work along these lines. Both young people and older folk are affected by severe loneliness.

These issues provided the context for a talk I organised in my childhood village in July, and which I blogged about on these pages.

My talk was about the stigma of mental health and aimed to promote Time To Change. I wanted to raise awareness of the insidious impact of stigma and its long-term damage, and explore how we can all make a difference to the lives of others through our daily interactions. I wanted my message to reach across the village and, more personally, make a mark in the place where I spent my childhood years.

For me going back to my former home, which I left almost 40 years ago, was quite an emotional occasion. It had been the culmination of a life long ambition, a seed borne in childhood that had finally flowered. In the dark corners of my mind has sat the repressed thoughts from childhood of my father’s mental health issues, and the attitudes of others at the time to this.

Assembled in the room of around 50 people were faces from my childhood, alongside faces of the present. An eclectic range of people and experiences, young and old. Friends and family sat beside strangers. I will always be very grateful for the efforts they made to attend and help me to achieve my ambition.

Social contact and interaction is a powerful weapon in challenging ignorance and the myths surrounding mental health. Breaking down the invisible barriers we put up and accepting people as people, rather than defining them by their mental health condition is critical. The two-hour event was informal and interactive thereby providing the ‘safe’ space for those who wished to be open and share their personal experiences, or the experiences of others they hold close.

I started with a mythbusting quiz about mental health to highlight the misconceptions that exist, then spoke about my work in mental health nursing, my anti-stigma initiatives, and also my own experience of depression. I covered my work in the media with the TV soap Emmerdale, advising on the award winning depression storyline of one of the main characters, Zak Dingle.

I stressed it was my hope to encourage the viewers to empathise with Zak’s plight, to see him as being vulnerable and a victim of his circumstances rather than a danger to others, and criminalized

To contrast with this I also explained my advisory role with the character Darrell Makepeace in BBC Radio 4 The Archers. This character had not been received positively by listeners because the producer had decided to criminalise this character. Despite this, I stressed this at the very least ensured people were talking about mental health.

It was a success. I was at pains to ensure it went well because it meant so much to me. I have delivered many talks and presentations previously to large and small audiences but this one was more personal.

Since that summer’s evening I have spoken to people to gauge how things went. Did it make a difference? Has it changed their views? Inspired them? Where do we go from here? The responses have enthused me.

I intend to arrange a follow up event to build on this and plant another seed for the future. A seed for the young people, some who, sadly, will inevitably grow up with the same experiences I had.

Hopefully there will be some changes in attitudes resulting from that evening. It might seem to many just a single, small event, but if it can change just a handful of attitudes and encourage people to talk about mental health, it will be a success. Change drips slowly, but it will come all the same. One day.

Cuts, Education, Local government, Poverty, Third sector, Young people

Tech two: UK charity recycles computers to Africa

October 13, 2014 Saba Salman

African students benefit from the UK's unwanted, recycled computers (pic: IT Schools Africa) — African students benefit from the UK’s unwanted, recycled computers (pic: IT Schools Africa)

Stories of public sector waste and inefficiency are commonplace, not least amid the current climate of cuts and the notion of “doing more with less”. Which is why I was interested to hear of a project in Gloucestershire that collects old computers from police, NHS and other public bodies and charities, gives them a new lease of life and distributes them to African schools.

IT Schools Africa, which celebrated its 10th anniversary last week, collects old, used machines in the UK, refurbishes them – dismantling them and fixing software problems, for example – before sending them to schools in Africa.

Given the recent news of dodgy tech hardware – and frankly even dodgier tech opinions – it’s a good time to be reminded about IT’s positive impact.

The charity has sent more than 44,000 recycled computers to eight African countries since its launch, allowing an estimated 3m children access to technology. It also delivers technical support and IT teacher training in the schools.

Schools in Africa benefit from the UK's revamped computers (pic: IT Schools Africa) — Schools in Africa benefit from the UK’s revamped computers (pic: IT Schools Africa)

Manufacturing a PC, as the charity points out, consumes 240kg of fossil fuels, 22 kg of chemicals and 1.5 tonnes of water. So re-using the machines not only benefits young people in Africa, but helps the environment (once the computers have reached the end of the lives in Africa, the charity also recycles the materials and parts).

In the UK, the charity offers work experience to local students and to young people with special educational needs as well as to the long-term unemployed. It works with three prisons – Cardiff, Whitemoor and Winchester – where prisoners work to refurbish computers.

Work experience students working to refurbish computers for Africa (pic: IT Schools Africa)

Over the last three year Gloucestershire Constabulary has donated 275 computers, the local NHS Trust 194 computers and charity donors include the Wildfowl and Wetlands Trust (147 machines), the Order of St Johns Care Trust (208 computers) and the Royal Hospital Chelsea, which gave 21 computers.

Private sector firms and individuals are also among those donating machines, and the charity is using its 10 year landmark to renew its fundraising dive, hoping to expand its network of donors and its work with prisons.

Find out more here.

Race, Refugees & asylum, Third sector, Uncategorized, Volunteering, Young people

Immigration: what is it like for a child?

September 19, 2014 Saba Salman 2 Comments

An image from the new book Billu Leaves India! (Artist: Iain MacLeod-Brudenell) — An image from Gersh Subhra’s book Billu Leaves India! illustrated by Iain MacLeod-Brudenell

How does a young child cope when he is suddenly uprooted from the people and places he loves and confronted with a new home in a distant, completely alien land? What was it like for a child to be among the first immigrants moving to Britain from the Indian subcontinent in the 1960s?

I like the idea behind a new children’s book, Billu Leaves India!, because it presents the rarely told story – from the perspective of a child – of the impact of immigration on younger members of the family. Launched yesterday at the University of Derby’s multi-faith centre , it aims to help children of immigrant families “make sense of the feelings of dislocation and strangeness, which are part of the immigrant’s journey”.

imgres

Although fictional, the storybook for children aged seven upwards is loosely based on the childhood experiences of its author, University of Derby associate lecturer Gersh Subhra, who left his small Indian village in 1964 aged four; the family settled in Coventry. Profits from the book go to Oxfam and Derby Open Centre, which promotes better understanding between cultures in the city. The author volunteers with both organisations.

drawing copy

The book tells the tale of six-year-old Billu, who leaves his beloved village in India to emigrate to England in the 60s with his family. The book focuses on the boy’s relationship with his beloved uncle Tyaa. Tyaa makes his nephew a copper bowl as a leaving gift, symbolising the pair’s long-distance relationship.

openingdoor(E) copy

Subhra, a former youth and community worker and ex-head of the university’s Centre for Community Regeneration, explains: “ “As a boy, I grew up with stories about India and the journey that many in our community made from there to England. These anecdotes were filled with all of the emotions one can imagine; the doubts, as well as the hopes and aspirations involved in moving to a new life.

“Because it was a long time before I went back to the village of my birth in India, I’ve added into my story a fictional perspective on what it might have been like. I even had an uncle who was a bit like Billu’s who, unfortunately, I never saw again after I left for England.”

boyandlady(E) copy

Billu Leaves India! is illustrated by artist Iain MacLeod-Brudenell – also a former University of Derby lecturer – and is published through Matador, part of Troubador Publishing. Copies can be bought via the publisher’s website or on Amazon.

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