Category Archives: Uncategorized

Autism, Disability, Health, Housing, Learning disability, Local government, Social care, Uncategorized, Young people

In limbo: life for people with learning disabilities moving out of hospital units

July 27, 2016 Saba Salman Leave a comment

Today's Guardian article — Today’s Guardian article

The government promised four years ago to move people from treatment and assessment units following BBC Panorama’s exposure of abuse at the privately run Winterbourne View.

The preventable death of 18-year-old Connor Sparrowhawk, who drowned in a Southern Health trust unit in Oxfordshire three years ago, and the subsequent Justice for LB campaign, further fuelled demands for action and accountability over the treatment of learning disabled people. In October, NHS England and council leaders set out a £45m plan to close England’s last NHS hospital for people with learning disabilities, plus up to half the 2,600 beds in the units.

But according to the latest figures, in June more than 2,500 people were still languishing in such units as the pace of change is so slow.

My piece in the Guardian today focuses on what happens to people as they are moved out of these secure hospital facilities and back “home” – “into the community”.

Some, like Ben Davis, who has autism and complex needs, are passed from pillar to post as suitable local support just doesn’t exist. Family-led research published today by charities Bringing Us Together and Respond highlights the problems for people like Ben.

Ben was admitted to an assessment and treatment unit (ATU) miles from his home after his first supported living placement broke down. After the ATU, he moved to a newly built flat nearer his family but that support has now also broken down. He has to move again, into temporary accommodation, while care commissioners organise the next option.

When I interviewed Ben’s mother, Catherine, she was both eloquent and outspoken as she described how the human rights of her son were being eroded after he was repeatedly failed by the very system designed to support him.

This is where we are today. Upwards of 2,500 people stuck in inappropriate, discredited care, and the strong will to get them out is being undermined by the lack of a clear way.

And meanwhile, many parents – every single one of whom has spent years relentlessly fighting for the right support – feel they cannot always openly challenge the authorities, such is the fragile and often hostile relationship between families and commissioners of care.

* Names and details in the article have been changed

* Read the full Guardian piece here and the check this for reports by Bringing Us Together and Respond on which the article is based

Autism, Community, Disability, Health, Learning disability, Music & arts, Social enterprise, Third sector, Uncategorized

Campaign for the capital’s first sensory bus

July 5, 2016 Saba Salman Leave a comment

Kay Alston's campaign for London's first sensory bus was inspired by her use of sensory books (photo: Kay Alston/Outward) — Kay Alston’s campaign for London’s first sensory bus was inspired by her use of sensory books (photo: Kay Alston/Outward)

Responding to a lack of relaxing, interactive spaces for disabled people, Londoner Kay Alston has decided to launch her own campaign for the capital’s first ever sensory bus.

The 32-year-old, who has moderate learning disabilities, is backed in her social enterprise project to create a mobile sensory room by Outward, the care and support charity that runs her supported living in Camden, north London.

Kay needs to raise £28,245 towards creating the project. A sensory room is a relaxing environment designed to focus on specific senses through special objects, and sound and visual effects. It enables people to interact with, and control the environment around them and is particularly beneficial for people with sensory impairments, complex needs and those with autism.

Kay Alston in her sensory room at home in London.

The idea is that people would pay a minimal fee to use the bus, with the money being reinvested into the social enterprise. The accessible vehicle would include elements like interactive carpets, star ceiling and LED Projectors.

Here, Kay explains why her project is so vital:

“Someone once said that sensory rooms have effects of taking medication without taking the medication. The room would be a stimulating place for people, and it could help to reduce anxiety and stress, and help to improve their concentration. People with disabilities should come to sensory rooms because it’s fun and fascinating.

“The sensory room on a bus will be an interactive and a calming environment. It will have an interactive floor, platform swing, bubble tubes and light projectors with music playing in the background too. The bus will be accessible to wheelchair users. It’s purpose would be to calm and stimulate people, by giving them an interactive and visually stimulating environment.

My idea was inspired by the Autism Show. I went to in 2014 where I got a sensory tactile book, and I have been to other sensory rooms and they’re lots of fun. I have been to day centres and nursing homes where people with high needs simply get parked on the side and have nothing to do. Outward was running a Dragon’s Den competition and staff who already knew of my idea encouraged me to enter. Outward invested in my idea and said they will help me set it up. Outward staff spoke to me about the online fundraising campaign, and helped put it online and I handed out over 100 leaflets to places I shop in, people I know and places where I use their services. It’s also nice to be a little famous.

I hope the bus will be a fun and interactive place for people to learn new things. People with high needs find it difficult to get out, and can’t easily go to a place like a sensory room. Everyone can do what they want and behave in a way where they won’t be judged, sometimes I walk along the street and laugh and people look at me funny and it makes me think I want more control. In a sensory bus I could have more control.

I want to run it through a social enterprise to make it bigger and better, to add new inventions and more equipment to use. The bus will drive around to different places to give more people a chance to experience and use it.

There isn’t a sensory bus in London, and there aren’t many sensory rooms in London. The sensory rooms in London aren’t properly maintained, so I have only been to sensory rooms outside of London. But some people can’t travel that far or outside of London, so a sensory bus would make it easier by going to them. People haven’t thought of a sensory room in London to be on a bus, and there isn’t a sensory room with an interactive floor.

The most difficult thing so far has been getting enough people to pledge as I don’t have many connections. But it is a unique idea because there isn’t a sensory bus in London. If we could make this happen it would be a great achievement for me and would help lots of people in London.”

Disability, Education, Older people, Uncategorized, Young people

Arts festival offers a focus on equal opportunities for disabled young musicians

May 27, 2016 Saba Salman Leave a comment

Performers from integrated circus company Extraordinary Bodies will be at the Fast Forward Festival next week. The event will highlight arts accessibility and, hope campaigners, boost calls for a new centre for training for disabled young musicians. — Integrated circus company Extraordinary Bodies performs at the Fast Forward Festival next week. The event will highlight arts accessibility (pic credit: Rachel Lambert).

Across the country, there are a dozen government-funded centres for advanced training, providing specialist education for young musicians. But there is no such equivalent for their young disabled counterparts.

However, it is hoped that an arts festival, which opens next Friday, will strengthen a campaign for the first ever such facility for musicians with special education needs and disabilities.

Next week, Colston Hall in Bristol will be home to the second Fast Forward Festival, which champions accessible music making and arts. Performances include those from the Paraorchestra, the world’s first professional ensemble of disabled musicians, founded by conductor Charles Hazlewood in 2012. Integrated circus company Extraordinary Bodies is another headliner.

Extraordinary Bodies performance of Weighting Photo credit: Richard Davenport

The return of the festival, which was launched last year, reflects the venue’s aim to champion arts accessibility and to contribute to a shift in perceptions of disability. As part of next week’s event, Colston Hall, run by Bristol Music Trust, is holding an exhibition involving the One Handed Musical Instrument Trust (the trust’s aim is to remove the barriers to music-making faced by disabled people).

Ruth Gould, artistic director of Liverpool based disability arts organisation DaDaFest, summed up the situation when I interviewed her recently, highlighting how negative assumptions about disability linger on in popular culture (“Lack of training, lack of educational opportunities, lack of work, lack of media and arts representation, demise of independent support, cuts in mobility allowance and personal assistance”.)

Colston Hall, run by independent charity Bristol Music Trust, wants to be home to the UK’s first centre for advanced training for disabled young musicians, both to encourage more opportunities for them to get qualifications and pursue a career in music, or just to be able to enjoy music. The aim of the campaign for a new centre, launched at the House of Commons earlier this year, is for the centre to train 2,500 young people from across England, and set a national benchmark for music accessibility.

The centre would form part of a £45m revamp of Colston Hall – Bristol council, the government and Arts Council have committed a total £25m so far – with new classrooms, state-of-the-art technology lab. The technology would include cutting edge instruments, such as those played by the flicker of an eye, or software that uses facial movements to control music.

Bristol Music Trust currently trains young disabled and special needs musicians, but the redevelopment would add new classrooms and a state-of-the-art technology lab will set new national accessibility standards. The venue, currently not accessible to disabled people, is due to close next summer for redevelopment; the plan is for it to reopen in 2019, fully accessible and home to the UK’s first specialist centre for the training of young disabled musicians.

Young pianist Ashleigh Turley at the launch of a campaign to create a new training centre for talented young musicians with disabilities

The area is already home to the South-West Open Youth Orchestra which is the UK’s only disabled-led regional youth orchestra. The Paraorchestra also recently relocated to Bristol. The addition of a centre for advanced training at Colson Hall, supporters hope, would turn the region into a beacon for accessibility and equal opportunity.

* On the same topic of accessible arts, integration and young people, I recently came across an innovative music project that aims to raise awareness about visual impairment and sight loss. Musician Marie Naffah, a 23-year-old singer/songwriter, was inspired to explore blindness after her grandmother developed age-related macular degeneration. Marie wrote, recorded and performed a song while blindfolded and then collaborated with a group of six blind and visually impaired musicians to record the track, ‘Blindfold‘. Disability is not an obstacle to creativity or talent, as Marie says in a TEDx Talk at the Courtauld Institute that went live this week.

Cuts, Disability, Legal Aid, Third sector, Uncategorized

The disability activist fighting injustice

March 30, 2016 Saba Salman Leave a comment

Social policy professor Peter Beresford once described Doug Paulley, who I interviewed for today’s Guardian, as as a “caped care home crusader”.

Paulley is known for his wheelchair priority case against transport company FirstGroup, hinging on whether bus firms are required to force people with pushchairs to vacate wheelchair spaces.

His initial win was overturned on appeal and is due to be heard in the Supreme Court in June in a move that could, as campaign group Transport for All says, “set a legal precedent for enforceable priority over wheelchair space”. The Equality and Human Rights Commission (EHRC) supports Paulley’s case, and his awareness-raising helped win him the Sheila McKechnie Foundation award for campaigner of the year 2015.

Paulley has won almost all the 40 disability discrimination cases he has launched over the last decade. Paulley, who lives in a care home and uses a wheelchair, is an activist, not a lawyer. He has represented himself in all but three actions, challenging equality and accessibility barriers in organisations from pub chains to supermarkets and theatre firms. He has won around £10,000 in compensation over 10 years, he estimates, by bringing complaints under the Equality Act in the small claims court.

He welcomes last weeks damning Lords select committee report on the Equality Act 2010 and disability, which chastises the government for failing disabled people in its duty of care. Paulley was invited to give evidence to the select committee and is quoted in the report.

He answers critics who claim he’s motivated by money or that he enjoys being “a bully” – in fact he often donates damages to activist groups and stresses that the compensation amounts involved are “dwarfed by legal fees” – a reference to high-earning lawyers who represent service providers (the small claims court maximum award is £10,000 but discrimination-related claims generally fall between £600 and £6,000).

The full piece on Paulley, who volunteers at a local Oxfam and has fundraised for disability charity the Calvert Trust, is here.

Cuts, Disability, Learning disability, media & communication, Music & arts, Third sector, Uncategorized

How cuts affect disabled people: “We’re going backwards – and fast”

March 17, 2016 Saba Salman Leave a comment

Public artwork from DaDaFest in January (photo: DaDaFest)

Coverage of the budget has been dominated by a focus on George Osborne’s headline-grabbing sugar tax, although it’s not quite enough to detract from the unfair deal for the embattled social care sector (check Twitter for #carecrisis to get a flavour of the feeling). The chancellor’s other measures are regarded as the ‘last straw’ for disabled people, already being hit by cuts, and he is now under fire from rebellious backbenchers opposing the £4.4bn cuts to disability benefits.

As Ruth Gould, the artistic director of the UK’s biggest disability arts event, DaDaFest, pointed out in an interview I did with her for the Guardian, the latest cuts threaten to make disabled people “more invisible”. The work of disabled artists, as she says, is also at risk, thanks to sharp reductions in funding from local authorities and Arts Council England (Ace).

In 2001, Gould organised a one-off community arts event for Liverpool city council to mark International Disabled Peoples’ Day. As the head of the North West Disability Arts Forum (NWDAF), Gould, who is deaf, argued a single day was inadequate, and designed a groundbreaking week-long festival.

Fifteen years on, DaDaFest is the UK’s biggest disability arts event and Gould its artistic director. The NWDAF eventually adopted the name of the jewel in its crown (“DaDa” refers to the initial letters of each word in the phrase “disability and deaf arts”), so DaDaFest refers to both the festival and its parent charity. Each biennial extravaganza draws 10,000 visitors and participants. It has launched the careers of comedian Laurence Clark and actor Liz Carr, and helped Liverpool win European Capital of Culture 2008.

Last week, as something of a curtain raiser to 2016’s two-week festival in November, DaDaFest held a seminar on the barriers to disability arts for black and minority ethnic people (BME). The awareness raising event complemented DaDaFest’s play, Unsung, recently performed at the Everyman theatre, based on the life of 18th century blind Liverpool poet, abolitionist and disability rights pioneer Edward Rushton.

Gould commends the Arts Council’s Creative Case for Diversity, launched in 2014 to encourage more BME, deaf and disabled people into arts, but fears such efforts are a drop in the ocean. She explains: “We don’t have the disabled people who put people on the stage – the producers, the casting directors, curators, decision makers.” She adds of DaDaFest’s recent BME seminar: “We tried to attract those we see as gatekeepers…[to] look at the barriers and issues and use them to try and influence change by identifying benchmarks that we can reflect onto to see if change if happening.”

Recent figures show just 2% of the arts workforce is disabled, an increase of 0.2% on previous year. With 19% of the UK registered disabled and the employment rate among disabled people at 46% (around 30% lower than the rate among able bodied people), this highlights the poor representation of disabled people in the arts.

You can read the rest of the interview here.

DaDaFest 2016 takes place in November.

Disability, Learning disability, Music & arts, Uncategorized

Play puts life with a learning disability centre stage

March 3, 2016 Saba Salman Leave a comment

Nathan Bessell rehearsing for Up Down Man at the Salisbury Playhouse. Pic: Laura Jane Dale

“I always wanted it to be about dance, drama, feelings”, said actor Nathan Bessell recently of the new play he has inspired and collaborated on.

The 31-year-old stars in Up Down Man, at the Salisbury Playhouse until March 12. The play, as I explain in this piece on the Guardian’s social care network today, is about Matty, a young adult with Down’s syndrome. Bessell, who plays Matty, has influenced the script, which also draws on stories from families of people who have a learning disability.

Nathan Bessell and Heather Williams in Up Down Man. Pic: Richard Davenport

To explore the issues raised, there will be three discussion forums for professionals in health or social care, theatre managers and families, with the first of these happening this weekend.

The show, by Bristol-based Myrtle Theatre Company, involves dialogue, original music and dance, and is a sequel to the company’s Up Down Boy, which I featured on the blog some time ago. The original play, also starting Bessell and written by his mother, Sue Shields, was performed in 2013 at the National Theatre and toured the country. The sequel, written by Brendan Murray, is not autobiographical, but follows the same character into adulthood and is presented from his perspective.

The two years of research and development involved in the new play currently running at the Salisbury Playhouse Murray involved the views and experiences of families and carers, with the process tailored to enable Bessell, who has limited vocabulary and a hearing impairment, to contribute.

Heather Williams, the artistic director of the Mytrle Theatre Company, has known Bessell since she began working with him when he was 16. Williams

Williams says her fellow actor’s influence has led to a more thoughtful, and gradual method of making theatre. However, as she stresses in today’s piece, the aim is also to produce a high quality piece of entertainment: “I hope people won’t think, ‘I’m going to see an issue-based play’, but come and see a damn good piece of theatre that changes the way they think.”

Nathan Bessell and Vic Llewellyn in rehearsals for Up Down Man. Pic: Laura Jane Dale

* Full story on the Guardian website

Community, Cuts, Disability, Learning disability, Social care, Uncategorized

Potential, not prejudice: photo project challenges disability stereotypes

February 8, 2016 Saba Salman Leave a comment

When newlywed Tessa got back to the hotel with husband Mark after their wedding, she found he’d arranged a surprise – he had scattered flowers and balloons around the room.

As Tessa recalls in a new project and book, Great Interactions by photographer Polly Braden: “I kept laughing at Mark – he was trying to throw the flowers around me…He’s happy now he’s married. We love each other. Being married doesn’t feel any different. That’s it. It makes me feel happy. Mark’s already got his name, so his wife will be Tessa Jane Ahrens, that’s mine and Mark’s choice. I used to be Warhurst – not anymore now. When my bus pass has run out they’re going to change my name on it.”

Tessa and Mark on their wedding day, Tring Church, Hertfordshire

The couple’s story is one of many documented in Braden’s book and exhibition. The project aims to capture the daily lives of people with learning disabilities, from everyday interactions to landmark events like Mark and Tessa’s wedding. The book will be published next month and the images will also be featured in an exhibition at the National Media Museum, Bradford.

Polly Braden spent two years working with social care charity MacIntyre and the people it supports across the UK. The resulting work, refreshingly, offers a glimpse of the diverse, individual, ordinary lives of people with learning disabilities – around 1.5m people in the UK have a learning disability, but the population, usually seen as a homogeneous mass or single statistic, is defined by needs and lack of ability, as opposed to current or future potential.

Braden’s project also comes at a time when public sector funding cuts threaten vital support services and, as I’ve written before, families fear that the long-promised improvements to the care of people with learning disabilities may never happen.

Caroline and David, Holmewood Community Centre

Braden’s work does not gloss over the problems, but offers a different perspective. She explains: “The people I have met all have stories about the barriers, prejudice and ignorance they and their loved ones have faced in simply trying to have fair opportunities in life. But their stories are also inspiring and filled with heart-warming moments which would have seemed impossible to imagine earlier in their lives – from being active and using public transport to graduating from high school and getting married.”

Aja with Farah, MacIntyre No Limits, Oxfordshire — Aja with Farah, at an Oxfordshire support scheme

Raymond and Peter, Christmas Party 2014, Civic Hall, Ellesmere Port, Cheshire

The photographer’s aim was to try to take photos about support “at the best it can be, but not to gloss over the profound problems in the provision of care and support and the challenges around this as well”. The project tries to look at what can be achieved for people when they are given good support, “and to talk about what happens when they are not”.

The aim of the project is “to challenge out-dated, institutionalised images and improve public awareness by recognising and highlighting the every day interactions and life changing experience of people with a learning disability”. It also focuses on social care professionals’ attitudes towards and relationship with the people they support. As one support worker, Raul, told Braden of the person he works with: “Mikey needs this kind of support: he needs to be around people who know and understand him, who are willing to go a step further and discover the bright and amazing person he is.”

Becky, Stephanie and Lesley, dance and movement class, St Elphin’s community centre

Sarah and Zoe, Great Holm Coffee Shop, Milton Keynes

Charles with Callum, MacIntyre School, Wingrave, Buckinghamshire

* All photographs by Polly Braden, the book Great Interactions is out in March and the six-week exhibition at the National Media Museum, Bradford, opens on 27 February.
* To mark the book’s launch, the National Media Museum and MacIntyre are asking people to share photos of “everyday moments that make life matter” on Instagram, using the hashtag #IamMe – see the website for more information
* For more reading, see this Guardian feature published at the weekend..

This blog was amended on Monday 29 February to include the Great Interactions Live website

Community, Disability, Learning disability, Music & arts, Uncategorized, Young people

How ballet can break down barriers

January 26, 2016 Saba Salman Leave a comment

An inclusive ballet session at ballet school Flamingo Chicks (photo: Flamingo Chicks)

A Bristol-based dance project is spreading its inclusive arts campaign, training teachers to run ballet sessions for disabled children and their non-disabled counterparts.

UK-based Flamingo Chicks dance school ran pilot sessions in Ghana earlier this month (photo: Flamingo Chicks)

My piece on the Flamingo Chicks dance school, which launched two years ago as a community interest company, is on the Guardian site today. Its weekly classes in Bristol, Leeds, York and London reach 1200 three to 19-year-olds with or without disabilities, and those with illnesses such as cancer. Classes offer access to mainstream dance activity (often, such classes are segregated), develop confidence, social skills, co-ordination, communication and concentration.

Now, the sessions are launching in Ghana – dubbed “the worst place in the world to be disabled” – sessions reaching 200 children and training 10 teachers to put on classes. Founder Katie Sparkes has contacts in Africa thanks to her work supporting charities with corporate social responsibility.

Sparkes says of the work in Ghana earlier this month: “We did lots of workshops with children aged two to 25 and also did a teachers’ training session where teachers and childcare workers from a variety of schools and orgs attended. We left them with lesson plans, equipment and a host of ideas. We’ve also set up an online ‘Global Chicks’ group where we can provide on-going outreach support. Any questions, ideas or motivation they need, our teachers will respond and coach them, also providing video tips or tutorials.”

Ballet, with its discipline and formal image, might not seem an obviously accessible art form, but Sparkes says it can improve body awareness, muscle strength and core stability. Its storytelling aspects and focus on character are also accessible.

Dance school Flamingo Chicks runs inclusive ballet classes for children of all abilities.

IMG_7100 copy

The school has eight teachers who focus on trips and performances as goals and benchmarks, instead of exams. The 45-minute or hour-long sessions include drama, dance and yoga using sensory equipment like feathers, dance ribbons, scarves and flashcards for deaf children, or hula-hoops to teach arm movements to a blind child. The relaxed atmosphere means children may wander around or makes noises without fear of flouting any rules.

There are an estimated 770,000 children with disabilities in the UK. Three quarters of families with disabled children feel so isolated that it has caused anxiety, depression and breakdown, according to charity Contact A Family. Four in ten (38%) parents of disabled children say their child ‘rarely’ or ‘never’ have the opportunity to socialise with children who aren’t disabled, according to a 2014 Mumsnet and Scope survey.

The full piece is on the Guardian’s social care network.

Uncategorized

The Social Issue will be back in January

December 21, 2015 Saba Salman Leave a comment

Thanks to all who read, shared, contributed to or commented on the blog this year.

I originally posted the image above in a piece back in May, on the Down’s Syndrome Association’s annual photography competition which challenged people with the learning disability to go behind the lens.

Always up for hearing about ideas and issues for 2016 – just drop me a note.

Saba Salman on social affairs