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.

Posted in Cuts, Disability, Health, Learning disability, Local government, Social care, Third sector, Young people | Tagged , , , , , , , , | Leave a comment

Photographs offer fresh perspective on disability

Alliance by Tim Beale

Alliance by Tim Beale

Depictions of friendship, cityscapes and natural images are among the powerful photographs in an international arts competition reflecting the world from a disabled person’s perspective.

Photographers with Down’s syndrome from the UK, Greece, Japan, New Zealand and America have entered the Down’s Syndrome Association’s annual My Perspective competition which, this year, challenged people with the learning disability to go behind the lens.

As the association says: “In years gone by, people with Down’s syndrome were photographed as exhibits; the viewer was not supposed to see the person, just the difference. The Down’s syndrome Association’s My Perspective competition turns the camera around and gives people with Down’s syndrome the chance to show the world from their point of view.”

I’m sharing some of the 25 shortlisted images in the competition, which was launched in 2010, here (more can be seen here) and the winner will be announced on 11 June by a panel of judges including photographer Richard Bailey, curator of the groundbreaking Shifting Perspectives project.

The pictures reflect a beautifully wide range of subjects.

Ready for a ride, by Daniel Harrison

Ready for a ride, by Daniel Harrison

Coco by Kyle McKay

Coco by Kyle McKay

Blue Body, by Rory Davies

Blue Body, by Rory Davies

The Old Tree, by Emily Buck-

The Old Tree, by Emily Buck-

The Park, by Takis Koumentakis

The Park, by Takis Koumentakis

Swimming with frogs, by Klay Green

Swimming with frogs, by Klay Green

Cheeky Robin, by Steven Padmore

Cheeky Robin, by Steven Padmore

Shadow Stories, by Lillie Davies

Shadow Stories, by Lillie Davies

Hello, by Takeo Niikura

Hello, by Takeo Niikura

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Employers’ public health role

Working-age ill-health costs the UK economy an annual £100bn, and in a piece for the Guardian online, I give a snapshot of what some employers are doing to improve the health of their staff.

It might be easy to dismiss lunchtime yoga sessions or in-house physio clinics as optional extras (or a “perk”) but the stats on workplace illness suggests a focus on wellbeing makes economic sense. More days are lost through staff sickness in the NHS than elsewhere in the public sector (according to the government’s 2009 Boorman Report) and sick leave costs the health service £1.7bn a year.

Employers are starting to recognise their public health role; almost 400 organisations have, according to latest figures, pledged support for the Department of Health’s public health “responsibility deal”.

You can read the full piece, part of a supplement on physiotherapy, here.

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Cutting employment support for learning disabled people is a false economy

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.

Posted in Cuts, Disability, Employment, Learning disability, Local government, Uncategorized | Tagged , , , , , , | Leave a comment

Crowdsourced art project maps our democratic history

Digital art project Democracy Street allows users to share pictures taken on mobiles.

Digital art project Democracy Street allows mobile users to share pictures reflecting the country’s parliamentary history.

With the election a few weeks away, democracy is the timely subject of a new digital art project designed to shed light on Britain’s parliamentary history.

Democracy Street is curated by artist Jon Adams who has Asperger’s syndrome – a form of autism – and I wanted to briefly mention the crowdsourced project today, on World Autism Awareness Day. Adams’ work focuses “on arts sciences and creativity as a person with Aspergers, including synaesthesia, systemising and sequencing”.

Participants in Democracy Street can use mobiles to take photos that contribute to the digital project.

Participants in Democracy Street can use mobiles to take photos that contribute to the digital project.

The Houses of Parliament have commissioned the project with support from The Speaker’s Art Fund and Arts Council England. A mobile web app allows users to explore and discover streets that have a connection to democracy and upload their own images. Images can include, for example, streets that share the same name as a Parliamentarian or that reflect events in democratic history. Adams will use the data generated by users to create new artistic maps of the UK and as users upload information, it appears on the web app, so you can see the crowdsourced project developing in real time.

The participatory scheme also coincides with the 800th anniversary of Magna Carta and the 750th birthday of Parliament.

More information here.

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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.

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Poor care for people with learning disabilities

Robin Kitt Callender who died after missed opportunities to save her life (pic: Callender family)

Robin Kitt Callender who died after missed opportunities to save her life (pic: Callender family)

By the time Robin Kitt Callender died, she had endured eight weeks of intermittent vomiting and diarrhoea, and her weight had fallen to five stone. In the four months before she collapsed at her Essex care home, the 53-year-old had visited her GP six times and A&E twice, but her inflammatory bowel disease remained undiagnosed.

Callender, who was severely autistic and partially sighted, with communication difficulties, died on 23 May 2012, less than 24 hours after finally being admitted to hospital.

An inquest last week concluded that she died from natural causes contributed to by neglect, with failings by her GP and hospital staff and missed opportunities to save her. Care home staff took her to the doctor, but failed to tell her sister (who usually accompanied her to medical appointments) of the severe symptoms until the day before she died.

There are 1,200 avoidable deaths of learning-disabled people in the NHS every year, according to Mencap’s research into “death by indifference”. A government-commissioned confidential inquiry into the premature deaths of people with a learning disability found that, on average, people die 16 years sooner than in the general population, with many deaths avoidable.

Among the families seeking answers and lobbying for change is that of Connor Sparrowhawk. Two years ago this month, the 18-year-old, who had a learning disability and epilepsy, was admitted to a specialist NHS inpatient unit in Oxford and drowned in the bath less than four months later. His preventable death led to the Justice for LB campaign and an inquest is due this summer.

The circumstances in the cases of Sparrowhawk and Callender are very different, but the principle is the same: people with a learning disability are dying because they do not receive the same quality of care as other people.

There’s more of my piece in The Guardian.

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Mental health: using song to break stigma

The project Creative Madness in Song raises awareness about mental ill health (pic: Song in the City)

The project Creative Madness in Song raises awareness about mental ill health (pic: Song in the City)

Yanamah was “drowning in the depths of despair…yearning for a glimpse of kindness and a friendly gesture”. Before her mental health deteriorated, as she wrote in a recent poem, she was “a woman of distinction” but now she is “forgotten and lost”. Her words, set to classical song, form part of a groundbreaking arts project to break down barriers about mental health and introduce audiences to a new genre of music.

The Creative Madness in Song project is run by charity Song in the City with The Maudsley Charity, part of the South London and Maudsley NHS Foundation Trust. The awareness-raising drive involves composers working with texts written by people with experience of conditions such as schizophrenia and depression; the songs are performed by classically-trained singers and pianists.

Young composers and people with experience of mental illness have collaborated to produce songs that include compelling descriptions of being sectioned and frank accounts of life with mental illness. There are two two free public concerts in London this week, tomorrow at St Mary’s Church, near Lewisham Hospital, and Wednesday 25 March at Guy’s Chapel, Guy’s Hospital.

The concerts are in partnership with Breathe Arts Health Research, a social enterprise that develops artistic projects in healthcare.

My full piece on the innovative programme can be read here on the social care pages of the Guardian.

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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.

Posted in Abuse, Bullying, Disability, Domestic violence, Health, Housing, Learning disability, Local government, Social care, Women | Tagged , , , | Leave a comment

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.

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