Category Archives: Learning disability

Dilnot: reaction round up

Today the Dilnot commission on social care published its conclusions in its Fairer Care Funding report. Among its findings are that care costs should be capped and the means-tested threshold increased under major changes to the funding of adult social care in England.

The report is a chance to finally fix a shattered system, there will be widespready reaction and analysis later today and beyond to what Dilnot himself calls a once-in-a-lifetime chance to overhaul social care but for now, here’s a selection of today’s responses which I’ll try and update throughout the day.

Sue Brown, Head of Public Policy at the national deafblind charity Sense: “Sense welcomes the Dilnot report, and in particular the key finding that additional public funding for adult social care is urgently required. But we are concerned that the media focus is only on older people which obscures some critical aspects. We believe the report clearly shows that not only can the Government afford to support disabled people of all ages, but crucially as a society we can’t afford not to. It is now up to the Government to fund adult social care so that it gives disabled people of all ages quality of life. For deafblind people social care means communication and mobility support, not just personal care.”

Julia Unwin, the Chief Executive of JRF and the Joseph Rowntree Housing Trust (a non-for-profit provider of housing and care services): “Today marks the most concrete and credible step for years. I believe that the proposed reforms have the potential to bring about a radical step-change in how we value social care, how we think about disability, and how we all – as individuals and as a society – plan and prepare for longer lives.
It is positive to hear commitments from all the main parties to set aside party differences and consider the Dilnot report with the consideration it clearly warrants.
The JRF now urges the Coalition Government to abide by its promises to deliver a White Paper in the next six to nine months. It would be a tragedy for this, one of the most pressing and defining issues of our age, to be kicked, yet again, into the long grass.”

Jeremy Hughes, Chief Executive, Alzheimer’s Society: “Today’s welcome report could bring to an end the scandal of the colossal Dementia Tax where every year tens of thousands of families are left to pay all their care costs whilst other diseases are paid for by the NHS. The government mustn’t miss this opportunity to right a wrong that is destroying lives. In a new system we must end the postcode lottery that gives different support depending on local authority. The Dilnot Commission has given the coalition government the opportunity to show that it is a caring government. Pending implementation they must also show they care, protecting social care spending in the way they are doing for health.”

TUC General Secretary Brendan Barber: “The TUC welcomes the increase in funding for the care of the elderly over the next few years, and the news that social care will be free for those who become disabled before the age of 40.
“The introduction of a national eligibility assessment should avoid a ‘postcode lottery’ and make it possible for those receiving social care to move around the country without losing their care provision.
“The TUC believes that social care should be provided free for those who need it, and funded from general taxation. The Dilnot Commission’s proposals could, however, be transformed into this NHS model by continually reducing the level of the cap on care costs. The government must not set too high a cap – a level above £50,000 per person would mean that families could still face losing their homes to pay for the vital care they need.”

Gordon Morris, managing director of Age UK Enterprises: “The Dilnot commission report delivers a clear call to action to the financial services industry to work with government to develop the innovative products needed to fund long-term care. Existing products, such as equity release and annuities, could present a solution, but far more has to be done to build flexibility into these products to increase access and ensure these products evolve to meet changing financial needs.”

Stephen Burke, founder of social enterprise United for All Ages: “Under the commission’s regressive proposals, the winners would be richer families whose inheritance will be relatively protected, while most families will face a more confusing and potentially costly care system. The proposed cap on care costs will still result in some older people being forced to sell their homes to pay for care and related costs.
“The proposals aim to reform the current inadequate system for funding care. But they would lead to a more complex, fragmented and confusing care system … This could be seen as a care ‘poll tax’ for the so-called squeezed middle.”

An interesting reaction from by social workerSarah Smith“: “It is local authorities that take the hit from policies devised by central government, and we can only hope that all parties are brave enough to act together for the country’s interests rather than consider of their own chances at the ballot box. We deserve much better than that.”

Labour leader Ed Miliband: “The last thing Britain needs is for Andrew Dilnot’s proposals to be put into the long grass. We three party leaders are of similar age and the same ­generation. This is a once-in-a-generation opportunity which our generation must address.”

Which? executive director Richard Lloyd: “Consumers tell us that long-term care is their top health care priority* so we welcome these recommendations and urge the Government to act sooner rather than later. If private insurance is to play a part in funding long-term care, then we need to learn lessons from the past, where products have either failed to meet people’s needs or have been mis-sold. This will be a new market with a clean slate so it’s important that strong consumer protection is in place from the start.”

Michelle Mitchell, charity director at Age UK, tells the Guardian that the report set out “a clear blueprint” for sustainable reform. Production of a white paper by next spring was ambitious but achievable, Mitchell said. But she warned: “Delay beyond Easter would be indefensible.”

Mark Goldring, chief executive of learning disability charity Mencap, said: “Now is the time for monumental change and it is vital that the government does not bury social care reform.”

John Adams, Voluntary Organisations Disability Group (VODG) general secretary: “Today is about more simply demanding more money – vital though additional funding is – it is about urgent reform of a broken system. The Dilnot commission has taken great pains to build cross-party consensus; ministers now need to match the warm rhetoric with which they greeted today’s report with swift action. The government must find the courage to put its money where its mouth is, succeed where previous administrations have failed and exploit what Dilnot himself describes as a “once-in-a-lifetime opportunity” to create a fair and sustainable system of social care.”

Senior Fellow at The King’s Fund, Richard Humphries: “The budget deficit should not be used as a reason for inaction. This is a long-term issue and questions of affordability go beyond the current economic situation. The additional public expenditure needed to fund these proposals is less than 0.25 per cent of gross domestic product – this should not be too high a price to pay for providing a care system fit for the 21st century….Where they have failed in the past, politicians from all parties must now seize the best opportunity in a generation to ensure that people can access the care and support they deserve in later life.”

Su Sayer, learning disability charity United Response’s chief executive: “The report’s recommendations are the first step towards creating a better system which ensures that people in need of care receive it, funded in a way that is not only fair, but seen to be fair….Whether viewing this economically or morally, we cannot afford to ignore these recommendations, which is why we urge all political parties to work together towards a better social care system for all.”

Guy Parckar, acting director of policy, campaigns and communications at Leonard Cheshire Disability: “The system as it stands is creaking at the seams, with more and more people missing out on the care that they need. This report must be seen as a clear call for action. All of the political parties must come together with one agenda and that is to agree a fairer settlement for social care. We cannot go on with disabled and older people missing out on care because of a system that simply cannot cope with the demands placed upon it…Too often disabled people with significant social care needs can be charged into poverty by our social care system. People are unable to work, unable to save, unable to buy a home as any income or assets will simply be taken to cover the costs of care. This is a critically important recommendation that could make an immense difference, and it is absolutely imperative that the Government acts on it.”

Domini Gunn, Chartered Institute of Housing (CIH) Director of Public Health and Vulnerable Communities: “In reforming the funding of social care, we urge the government to follow Dilnot’s recommendation to review the scope for improving the integration of adult social care with wider care and support system. This must include housing, and housing support, providers and could help drive a more preventative approach, incentivised through funding arrangements.”

Sir Stuart Etherington, Chief Executive of NCVO: “This review makes major strides towards identifying how we can achieve an affordable, sustainable and fair funding system for all adults in the UK. The challenge now falls to all parties to resist turning the review into a political football and to prioritise responding swiftly and decisively. It is the most vulnerable who will suffer if we cannot seize this golden opportunity to improve the funding of adult social care.”

“I feel privileged to be different; I wouldn’t want to be the same as everyone else.”


Above, a film about the making of a play about Down’s Syndrome at a Camphill Village Trust community, The Grange in Gloucestershire.

Today’s the start of Learning Disability Week. What’s it like living with a learning disability? A few years ago, my sister, who has Fragile X syndrome, spotted the teenager next door embark on her first driving lesson. “I’ll never do that,” she quietly remarked. Quick as a flash, my mother replied: “You might not, but there’s plenty of other things you do brilliantly.”

Another time she asked why she had Fragile X syndrome. A plain, simple question and one that the rest of us asked for some time after her diagnosis (the answer: the genetic lottery). That was a tricky moment – it wasn’t that she required a literal explanation of the genetic make up that set her apart, but she was struggling to make sense of why there were certain things she found difficult to do and certain situations she felt uneasy in.

Unable to avoid some cliches, we explained that everyone’s different – wouldn’t the world be a boring place if we were all the same? – and talked about her amazing achievements which regularly leave us awe-struck, biodynamic farming among them.

If you’ve no experience of learning disability, you might assume that people like my sister potter along aimiably, existing in a smiley, hand-flapping, blissful state of ignorance, unable to articulate or appreciate the extent of their special needs.

The illuminating and moving film, above, about the making of a play about Down’s Syndrome at a Camphill Village Trust community, The Grange in Gloucestershire, lets the actors speak for themselves:

“I can’t be like Robin or Claire; I’m different.”

“It feels weird being with Down’s Syndrome.”

“To be honest, I feel quite privileged to be different; I wouldn’t want to be the same as everyone else really.”

The playwright, whose brother has a learning disability, recalls the days when those with learning disabilities were ushered away from mainstream society: “I was seven and he was nine when we were separated…my brother was tucked away in a sheltered workshop.. he would be a footnote..something to be forgotten.”

While grim institutional care is no longer the only option for people with learning disabilities, the horrific goings-on at the Winterbourne View care home and new Mencap research on disability hate crime are just two reminders of the massive problems that remain.

For me and my family, the awareness week that starts today means not only appreciating the scale of the challenge when it comes to creating a fairer society for the learning disabled – and demanding action – but celebrating the achievements of those we feel proud to call “different”.

No voice for the vulnerable

Can you imagine being so desperate for affordable legal advice that you go on an eight-hour, 300-mile bus trip just to get help? I came across such a case seven years ago; a Welsh man facing eviction from his council-owned cottage when the area was being redeveloped found that the only housing legal aid lawyer willing to take on his case was in West London. So desperate was the man to stay in the cottage he had been born in and so great was his fear of homelessness, he made the trip.

Although this tale is from 2004, it highlights the vital safety net legal aid (when the state pays all or part of the legal costs for those who cannot afford them) provides to society’s most vulnerable. The number of solicitors who carry out legal aid work have been falling in recent years (hence the Welsh man’s 300-mile journey) thanks to uncompetitive pay rates, hours of unpaid work and red tape. But now, under government plans to cut the legal aid budget by £350m, the situation could get worse for those wanting to access affordable legal help. It is estimated that around 500,000 people could lose out on legal advice amid the planned cuts as the government wants to remove clinical negligence, family law, education, non-asylum immigration and housing cases from legal aid’s scope.

Today is Justice for All day, with marches and petitions planned by a coalition of 3,000 charities campaigning against the cuts and you can also oppose the cuts at social action campaign site 38 Degrees.

The Law Society, which represents solicitors in England and Wales, has also launched Sound Off For Justice, a campaign for alternative reforms that it says will save more than the government’s own proposals and protect legal aid funding. The campaign encourages the public to demand the government reconsider its plans and look at the alternative measures which it says would save £384m in the next 12 months. You can record a voicemail for Justice Secretary Ken Clarke against the cuts here. The campaign is supported by, amongst others, housing charity Shelter, the Refugee Council, lone parent charity Gingerbread and housing association Eaves.

Here’s the campaign’s latest video:

There’s something rotten going on when an endless glut of super-injunctions protect the privacy, reputations and careers of the super-rich but a lone parent, for example, is denied basic access to his children because he simply can’t get the afford the advice.

Midlands movers shaking up the arts scene

A scence from Visitor, by Movers theatre company

It’s not unusual to view art as an escape from daily life. It’s more rare for the audience to be transformed from observer to participant and to feel so immersed in a theatrical event that they feel like the only world they inhabit is the one on the stage.

I’ve just come across what promises to be a uniquely interactive drama experience, Visitor, by the East Midlands-based theatre company Movers. The installation-style performance, designed with disabled children and their families in mind, takes place in a dream-like, enchanted forest with “hidden activities” for the audience to participate in, a multi-sensory environment and the intriguing promise of some “interactive pods”. Audience members sit in a clearing in the “magical forest world” for the performance and, if they feel like it, interact with the characters, technology, materials and colours.

For some reason, I’m imagining A Midsummer Night’s Dream minus the foliage-related trip hazards and The Bard’s English…but the performance promises much more than this.

An actor performs with Movers theatre company

Movers, a company of learning disabled actors, is part of the 15-year-old Speakeasy participatory arts company based on the Saffron Lane Estate in Leicester. Speakeasy works in schools and youth theatres to create an accessible environment, which can be safely and freely explored. The group has developed a non-verbal, movement-based style, which audience-goers report to be quite mesmerising.

Movers performed in front of an audience of 25,000 at the opening ceremony of the 2009 Special Olympics hosted in Leicester (check out the amazing costumes). Formed by Speakeasy in 2004, the theatre company’s aim is to create professional quality touring performances which are inspired and created by the learning disabled adults involved. The company, which includes 11 adults aged 19 to 60, creates at least one new performance a year, and its recent work has included commissions for the Leicester City NHS Primary Care Trust – Make my stay, about experiences of healthcare from a learning disabled point of view – and an educational play about personalisation and the changes to the benefit system.

Speakeasy, which costs about £30,000 a year to run, relies on commissioned projects to make its work possible and, through Movers, has worked with roughly 20 learning disabled artists since 2004.

Speakeasy artistic director Andy Reeves says of Visitor: “We’re trying to make a piece of theatre which, though it’s imagined, devised and performed by learning disabled artists, will be a great audience experience for everyone. Visitor gives the audience the chance to get closer to the action, interact with characters and technology in a dream-like, woodland setting. Our goal is for everyone- disabled, non-disabled, young, old- to come out with a smile on the outside and a warm feeling inside.”

Movers actor James Langley adds: “It’s not going to be your average performance,it’s going to be completely different to what you’ve seen before, because it’s going to be by Movers, who do things differently to everyone else.”

Langley’s fellow actor Emma Shuttlewood says she wants to provoke an amazing response in the audience: “I want them to say ‘wow’!” Based on Movers’ previous successes, I’m sure they will.

Visitor premieres on Wednesday 1st and Thursday 2nd June at Embrace Arts, Leicester, as part of the Spark Children’s Arts Festival.

How the law stops young people using advanced wheelchairs

Like most 13-year-olds, Jenny Wilson likes to go shopping with friends. Her athetoid cerebral palsy means that she has used a wheelchair for almost a decade, but she is capable of negotiating busy high streets. Yet Jenny’s independence is under threat – not from her disability per se, but by a legal anomaly that means she breaks the law if she uses the wheelchair that best meets her needs. Read my piece in Society Guardian here.

Art for autism’s sake

Tim, 17, had not uttered a word for five years when he arrived at Beechwood College. Two years into his time at the specialist residential college in Cardiff, Wales, the teenager with Asperger’s syndrome started speaking. Two years after that, at 21, he passed his GCSE Art and Design with a grade B, had a work placement at Tesco under his belt and has since left the college and got a job.

Beechwood, a further education college for students aged 16 and over with an autistic spectrum disorder (ASD), uses art and creativity programmes as the backbone of its personalised education programme. Students study music, 2D art, 3D art, digital media and horticulture and learn to articulate themseleves through these activities.

Batik Tiger created by a student at Beechwood College
Beechwood College student draws pebbles after visiting the beach in a project led by University of Glamorgan lecturers working at the college

Earlier this month, to mark World Autism Awareness Day, the college launched a national art competition to showcase the creativity of young people with autism and related conditions. The competition project, Create! Art for Autism, is open to those aged 11 to 25 who are formally diagnosed with an ASD, with the aim of showing that art can not only encourage learning and instill lifelong skills but, as Tim’s case shows, also boost quality of life and future prospects. Shortlisted entries to the Beechwood-led scheme will be exhibited in a national art tour, starting at The Old Library in Cardiff and moving to London galleries from the summer.

I know my sister has developed a newfound independence and confidence thanks to activities from painting to pottery, bakery, art and horticulture during her time with the Camphill movement. The Beechwood competition gets my vote not only because it encourages young people with special needs to find their own voice through creativity and practical action, but because it aims to bring the artistic talents of the learning disabled to a wider, more mainstream audience.

Darren Jackson, principal of Beechwood College, explains: “It’s my belief that creativity is essential to those with an autistic spectrum disorder on more than just a therapeutic or enjoyment level. We have seen how engaging in such programmes can transform young people who previously struggled to make themselves heard.”

Jackson says stop motion animation is a particularly effective way of encouraging confidence and self esteem: “The use of this creative multimedia tool has enabled many of our students to gain greater confidence and self esteem which, indirectly has resulted in them demonstrating a greater willingness to share their thoughts and ideas within their peer group. Many students who in the past have displayed high levels of anxiety are now willing to record voiceovers for their animated characters and use them as a vehicle for communication.”

Competition entries in categories including 2D, 3D and digital media art, can be submitted until June 10. The judging panel includes Brendan Stuart Burns, artist lecturer at The University of Glamorgan, Lucinda Bredin, editor at Bonhams Magazine, Hugh Morgan, chief executive of Autism Cymru and Beechwood’s Jackson. Finalists will be announced on June 24 and the awards ceremony will take place in Cardiff on July 24.

The cuts: the worst is yet to come

An authoritative analysis in today’s Society Guardian of the deepest spending cuts in a generation, which start from Friday. The special issue inludes some sector by sector breakdowns of savings and job losses, including pieces I contributed to the in-depth coverage.

The cuts – an alternative

For those who’ve not already seen it, this powerful film presents an alternative to the government’s devastating cuts agenda. It features community groups and anti-cuts campaigners along with Bill Nighy, Radiohead’s Ed O’Brien and Zac Goldsmith MP. Worth watching ahead of this weekend’s demo in London against the cuts.

It Cuts Both Ways…The Alternatives from Oonagh Cousins on Vimeo.

Fiction based on fact; theatre explores the threat to special needs provision

Art mirrors life for those of us with an interest in learning disability issues as a London play explores the threat to special needs schools. The play coincides with the government’s plans to overhaul special educational provision and comes at a time when learning disablility support is in jeopardy thanks to public spending cuts.

Actors in Alan Share's Death of a Nightingale

Death of a Nightingale runs at Hampstead’s New End Theatre until Sunday 3 April and focuses on the inclusion agenda which can shoehorn children with special needs into mainstream schools that offer inadequate support.

The play, written by Alan Share, a former chair of governors at a special school, also addresses the problems when a special school is threatened with closure. Since 1997, more than 100 special schools have closed, resulting in the loss of about 9,000 places for children.

Professional actors are joined on stage with learning disabled young people from the Oak Lodge School in East Finchley. The cast includes 18-year-old Max Lewis, an actor with Downs syndrome who appeared in Notes on a Scandal. Lewis plays a pupil who truants from schools that fail to meet his needs.

Written in 2009, the play is being resurrected to coincide with the government’s green paper on special educational needs. Share describes the green paper as “yet another missed opportunity for the government”. He adds: “It wants to find a quick fix for children with moderate learning difficulties and avoid the challenge of meeting more complex and varied needs.”

For more on the green paper and special educational needs provision, check out the very good Guerrillamum blog.