Category Archives: Learning disability

The world’s most common – but least known – inherited learning disability

Chances are you’ve never heard of the world’s most common inherited learning disability – it was news to me until my sister was diagnosed with it several years ago.

Today is Fragile X Awareness Day in 16 European countries including the UK. The syndrome affects least one in 4,000 girls or women and one in 6,000 boys or men, as my family discovered in 2003 when my sister was diagnosed at 14.

Late diagnosis of Fragile X, as in my sister’s case, is sadly all too common – but it’s still better than the condition remaining undiagnosed (again, common due to it being misdiagnosed as autism or misunderstood by many professionals).

Recognised just 30 years ago, it is diagnosed by a blood test revealing the abnormal “fragile” site on the X chromosome. Symptoms include social, language and emotional problems, mild to severe learning disabilities, and autism-like behaviour.

Professor Jeremy Turk, who advises the support charity the Fragile X Society on the psychiatric and psychological aspects of the syndrome, is calling for people diagnosed as autistic who also show signs of developmental delay to be tested for Fragile X. “The relatively low levels of diagnosis of Fragile X Syndrome is a matter of extreme concern as it prevents families from receiving the correct support, understanding their condition and restricts their ability to make informed decisions about their lives,” says Turk. “A lack of awareness of Fragile X Syndrome amongst health professionals, and society in general, contributes to this low level of diagnosis and the failure to understand the links with, and important differences from, autism.”

As with any complex need, the symptoms of Fragile X vary hugely, making a single template of care impossible (even if the current drive towards person-centred care would allow it) and “the system” a minefield for parents and families. With children, as we found in my sister’s case, the multi-agency support can include the health visitor, GP, paediatrician, school special educational needs coordinator, social worker, care manager, speech and language therapist, occupational therapist and physiotherapist. That’s if you’re lucky, have the time, energy and the wherewithal to negotiate the system.

And, as is par for the course in social care, just when you think you’ve secured the right tailor-made support, it’s dismantled and you have to start all over again once your child moves from children’s to adult services. All too often the “transition” – a catch-all term that makes it sound like an elegant, seamless move, oh the irony – to adult care is as relentlessly bumpy as that first roller coaster of diagnosis and the initial securing of provision.

I explained my family’s experience in a Guardian piece several years ago, from the furtive glances from strangers at her “inappropriate” behaviour to the fact that family excursions would involve packing a few small towels, just in case Raana got so stressed that she vomited. Since then have described my sister’s Raana’s path to the right care and support on this blog. We have been fortunate; our experience has always been more of a series of battles than full-blown crises, but I know others are not so lucky.

In 2006 Alison Davies jumped from the Humber Bridge with her 12-year-old son, Ryan, who had fragile X. She had complained that Ryan was not receiving his entitlement of respite care, although this was investigated and found not to be the case. The contrast between the chink of optimism my family and I had just started seeing in my sister’s case, with her tentative moves towards independence and finding her own voice, and the total, utter despair and isolation that Alison Davies must have felt was horribly stark.

After that incident on the Humber Bridge, Labour MP Betty Williams went on to table an early day motion in Parliament, criticising the insufficient support for families of children with Fragile X and autistic spectrum disorders that pushes many to “crisis point”. Just recently I read an extremely moving piece by a mother who admitted that “as a parent you feel guilty, and then you feel alone”.

Half a dozen years after Williams tabled her motion, I wonder how much has really changed for families affected by Fragile X, while remaining hopeful about the impact of today’s awareness day.

* read about Fragile X on twitter using the hashtag #fragilexday

From homeless to hero

Tom Hodson at the Ancient Technology Centre, Dorset. He has just won a BTCV Green Hero award. Credit: Professional Images
Tom Hodson used to live on the streets, his was a peripatetic lifestyle that did little to help him overcome his depression and manic episodes. Diagnosed bipolar, even when he got a roof over his head, he often went for a week without proper sleep.

Today he is honoured as a Green Hero in an annual awards scheme, having made a difference to the local environment through volunteering and transforming his life in the process. The 21-year-old from Salisbury has has won in the natual health category in the awards run by practical conservation charity British Trust for Conservation Volunteers (BTCV), recognising how he’s changed his own life and inspired others. The Green Hero awards show the positive impact of those who give their time for community-based conservation projects.

Environmental charity BTCV volunteer Tom Hodson a "green hero". Credit: Professional Images

Tom’s hands-on, practical work with the charity has had, he says, huge benefits on his sleep issues. Without his role, he adds “I’d be doing nothing..going nowhere with my life.”

The scheme has given him “direction and purpose” and has boosted his mental health. As well as becoming more confident, he has learned time keeping, healthy eating and how to use a computer. He leads groups of volunteers and is looking forward to coming off benefits and into paid work.

Environmental award-winner Tom Hodson at the Ancient Technology Centre, Dorset. Credit: Professional Images

Tom’s fellow Green Heroes include Michael Rogerson, 20, who won the volunteer of the year award. Michael, who has been deaf since birth, joined BTCV after 15 months without work, he was depressed and had very low self esteem. He has now got his dream job as a gardener and is learning to speak after having a cochlear implant and one day hopes to set up a dry stone walling business.

And the benefit of supporting and including a diverse volunteer workforce is not simply on the inviduvual themselves; having such a diverse team of volunteers improves social inclusion and breaks stigmas.

There are of course specific schemes that offer people with disabilities or those with mental health problems the opportunity to donate their time to the community with support. Schemes like the Respect Us project, run by charity Community Service Volunteers (CSV) that help young learning disabled people to volunteer as they move from school to becoming a young adult.

It might seem like the current financial climate is the worst time to invest in extra support for volunteers who might be vulnerable in some way, but supported volunteering, pays dividends. Check here for great little film showing how Jenny, with Asperger’s found new confidence and skills and boosted intergenerational contact between local youth and older people through supported volunteering).

At BTCV, volunteer officers are aware of the impact of “green heros” likes Michael and Tom. Senior project officer Rachel Miller, who nominated Michael says: “His can-do attitude, where there are no barriers, has been an example to us all.” Tara Hares, volunteer officer who works with Tom, adds: “He turns up raring to go, he doesn’t allow his issues to affect the work he is doing..I feel proud working with Tom, knowing what he has been through and he is still funny, and brilliant at what he does. I’m pleased and proud to work with him.”

Watch this quite lovely film, introduced by Sir David Attenborough, which features both Tom and Michael and other inspiring volunteers:
http://youtu.be/GSCattrH3bA

* On a related note, the Hardest Hit campaign run jointly by the Disability Benefits Consortium and the UK Disabled People’s Council has organised several events tomorrow, Saturday 22nd, in protest about the impact of cuts on society’s most vulnerable – a community that includes people whose needs echo those of Tom and Michael, above. More information on what’s happening tomorrow is here.

Autism and theatre: good work waiting in the wings

We need more of this: young audiences enjoy accessible and inclusive performance at London's Unicorn Theatre. Pic: Alastair Muir

Anger, frustration, embarrassment, guilt and despair. Depending on what unfolds on the stage, the range of emotions you experience at the theatre can be extraordinary. But what if those emotions are triggered not by the actors, but by a fellow audience member, or a member of the theatre’s staff?

This can be the fate awaiting theatre-goers with a learning disability or those who have the temerity to attend a show with someone who happens to have a learning disability, as the father of autistic 12-year-old Gregor Morris found to his disgust earlier this year.

I had an unpleasant experience when I took my sister to a West End musical, although our shoddy treatment was at the hands of small-minded fellow punters, not any members of staff.

Something similar happened when four-year-old James Geater from West Sussex went to the Theatre Royal Drury Lane in London in August. As James’ mother Karen said at the time, James is part of society and children and adults are losing out through no fault of their own – and Gregor’s and James’ stories are only those that have been reported.

As for the family of Gregor Morris, they took their campaign to the internet, and now they have more than 4,100 supporters on Facebook. Earlier this week, their awareness-raising drive, backed by the National Autistic Society, culminated in a major event at London’s Unicorn Theatre. The day-long forum, Autism and Theatre: An Industry Inspiration Day, brought together theatre staff and autism experts.

It was apt that the Unicorn hosted the day; it specialises in theatre for children and young people and has long been an inclusive and accessible arts venue with autism friendly performances.

Suspended from a hanging chair with an arial performer at Unicorn's recent Something in the Air show. Pic: Alastair Muir

The event was a partnership between the Ambassador Theatre Group (the largest owner of theatres in the UK – making great amends as owners of the theatre Gregor Morris was ejected from), the Unicorn Theatre, National Autistic Society, Action for Children’s Arts, Theatrical Management Association and the Society of London Theatre.

The hope, say organisers is that the event will create “long-lasting cultural change” and help spread the word about existing access work in the theatre industry. They hope to spark similar awareness days regionally and lead to better interaction between local venues and families affected by autism.

I wasn’t at the event but apparently around 200 theatre industry types attended to learn more about autism, hear from the families affected by access and inclusion issues and discuss best practice. Actor Jane Asher, president of the National Autistic Society spoke about the fact that simple adjustments in theatres could boost access while training staff can also make a huge difference.

There are, of course, various initiatives to make the arts more accessible, the Autism Friendly Films project is just one. The Unicorn Theatre has pioneered sign-interpreted and autism-friendly screenings and performances.

Awestruck and at ease, watching at the Unicorn Theatre. Pic: Alastair Muir

Unicorn staff get autism awareness training and performances feature smaller audience sizes and a chill-out room with activities for anyone who needs some time out. A “familiarisation visit” is available the night before a show, to reduce anxiety and stress for first-time theatre-goers (this, I think, is utter genuis – and so simple and inexpensive for other venues to adopt) and the theatre has a dedicated access manager. This weekend sees the latest access-friendly show, Billy the Kid and the venue is also hosting the Art for Autism exhibition that I’ve blogged about before.

While the mind boggles as to why this kind of large-scale theatre industry event hasn’t happened before and why it took pressure from a parent campaigner to mount, it’s better late than never. The great practice and partnership that exists needs to be widely shared, so the work of the most accessible and inclusive venues trickles down regionally and locally, reaching beyond the big towns and cities that boast the biggest venues.

If the theatre sector debate translates into visible action, people with learning disabilities and their families can see shows they love without paying through the nose for a half empty box, going out of their way to attend midweek matinees which tend to be less busy and therefore often less stressful or – worst of all – having to leave before the end, either by request or because they feel unwelcome.

And more accessibility combined with a welcoming and understanding attitude should make commerical sense in theatreland. The economy might be suffering but the Society of London theatre estimates that box office takings totalled half a billion pounds last year, so there’s a bums on seats reason to attract more and younger theatre-goers into the auditorium (staff just have to be prepared for the bums to defy convention and to wriggle on and off seats during the performance).

I’m eager to see how this week’s event is followed up although I wonder if the organisers missed a trick when they tagged the day only on autism. While those with autistic spectrum conditions can require very specialised care and a unique, tailor-made approach, I’d hope that theatres can appreciate the needs of all of those with special needs, many of whom don’t necessarily have a label for what makes them different.

It’s a niggling point however, and if the event fires debate and pushes theatreland to develop a more consistent approach to its treatment of all audience members, then what matter? It’s worth noting that event co-chairman Jonathan Meth, a theatre consultant, arts tutor at Goldsmiths, University of London, and parent trustee at Ambitious About Autism, acknowledged the need to broaden the debate’s remit, saying after the event: “While the day was focussed on those with autistic spectrum conditions, we hope it was both an inspiring and practical day for all those who want to make the experience of different people coming into their theatres an excellent one.”

The other side of the theatre access and inclusion coin involves seeing more actors of all abilities onto the stage. A combination of user-friendly theatres and more integrated performances would support the kind of cultural shift discussed at the Unicorn earlier this week. How can people who behave, sound or move differently or don’t look quite like “us” be fully welcome in an audience that has never had the chance to see them perform?

I’ve blogged before about the great work of Heart n Soul, for example. On a more general disability arts tip, I’ve also just been reading about the work of another group, Accentuate, supporting projects encompassing the arts, culture and sport to change the way disabled people are viewed, the project is hooked on the Paralympic Games.

When I heard about the Autism and Theatre event, I was reminded of the innovative work of Speakeasy Theatre Company, which aims to integrate actors and audiences of all abilities. The simple words of artistic director Andy Reeves on a recent piece of work could be a motto for the companies that run theatres: “Our goal is for everyone – disabled, non-disabled, young, old – to come out with a smile on the outside and a warm feeling inside.”

A well-known playwright once compared life to a play. If all the world was a stage, movement between the two might be more fluid, giving us a better chance of reflecting society’s many facets on the stage and in the auditorium.

* The Facebook campaign and debate sparked by Gregor’s experience is at www.facebook.com/groups/greenwicked

* All images of Something in the Air at the Unicorn Theatre, London, by Alastair Muir

* Click here for information about the Unicorn’s current accessible performance, Billy the Kid and here for information on the Art for Autism event.

The vital role of creative thinking in care

Supporting people to make the most of their community, pic: CareTech

Seven years ago, no one could have imagined Martin* living anywhere but in residential care. The then 24-year-old, who is autistic and has a moderate learning disability, was exploited by ‘friends’ who dealt drugs from his housing association flat in London, leading him to lose his tenancy. Head to the Guardian Social Care Network for the rest of my piece on the importance of transition services when supporting the vulnerable to move from residential care towards more independent living.

Chaos and capability

It was the sort of toxic mixture of elements and multiple assault on the senses that would until recently have triggered some challenging behaviour in my sister; a bustling crowd, loud music, the company of strangers and – to add insult to injury – an extraordinary day with no familiar routine.

But not only was 22-year-old Raana Salman at the very heart of the carnival throng in my parents’ Sussex hometown during the recent Bank Holiday weekend, she was loving every noisy, overcrowded minute.

Wearing a pink fairy costume and a wide, joyous grin, she was a proud participant in the Ferring Country Centre carnival entry as part of the learning disability charity’s float in the Worthing carnival. She even featured in a photograph in the local newspaper.

My sister, Raana, in her Ferring Country Centre tee-shirt
Raana Salman - carnival queen

The hand elegantly pointing at onlookers with a homemade wand (beautifully fashioned from a battered old Christmas tree star and a cardboard wrapping paper roll) was the same one that would flap incessantly or claw at my mother on fractious days out when something was unfamiliar or overwhelming.

It was the same hand that several years ago would frantically gouge out the skin on her other arm during an anxiety attack. This is what happened the time I mistakenly thought she’d be pleased with a trip to my new place in London; her worry and tears escalated the closer we got to my front door, and failing to placate her, I just drove her back to Sussex.

My extremely biased, unfettered pride at my learning disabled sister’s achievements will be obvious to some regular readers – from her first few faltering steps towards finding her own identity at The Mount, the first Camphill community in East Sussex she joined at 16, to her recent progress at Camphill’s Lantern Community in Ringwood, Hampshire. And the only major problems so far have been other people’s narrow minds.

And I’m delighted to say my shameless promotion of her progress continues apace. This summer, she spent a few days at the Ferring Country Centre, learning social and life skills through activities and enjoying day trips that boosted her independence and widened her horizons enough for her to join in the carnival parade.

The centre has grown since its launch in 1986 by a group of like-minded parents who recognised the need for a workplace-based setting for vulnerable adults. The aim is to boost social inclusion for the learning disabled, supporting them to play a valued role in society through training and work experience.

The scheme’s garden centre grows plants and vegetables for sale to the public with the project’s participants helping in every aspect of production. The riding therapy lessons are taken up by 600 learning and physically disabled adults and children every month. People with disabilities also work in the café and the scheme’s small animals farm while off-site, they get involved in community projects, including newspaper collection and gardening.

When I asked Raana if she’d mind me writing about her latest experience, she nodded: “I loved it. I want to do it again next year.” And when I asked what the best thing about the Ferring centre was, she said proudly “my top”. Her answer didn’t really surprise me; the logoed tee-shirt and matching fleece are badges of honour for my sister as they demonstrate that she belongs to a community and they make her feel – very officially – valued. Do check out the Ferring project’s gallery to see more pictures of what this excellent centre does and to the team there – thank you, you’ve made our summer.

However, as grateful as I am for my sister’s progress, I never take it for granted. While she is currently so well-supported, others are in unhappier situations and the funding future is less than rosy for disability services. As campaigning organisations like the Learning Disability Coalition (LDC) and Voluntary Organisations Disability Group (VODG – note of transparency here as I also manage the group’s blog) have made clear, government cuts are a massive threat to disabled people while current funding rules are in desperate need of an overhaul.

Next week, 13 September, the Welfare Reform Bill has its second reading in the House of Lords and there is a very real fear that people with disabilities will lose out in the changes. Disability Living Allowance (DLA), for example, is used by the disabled for daily living costs but the government plans to replace it with Personal Independence Payment (PIP), which will save it money. But a recent survey of 2,200 people by charity the Papworth Trust, shows that the changes under PIP would mean 86% of disabled people would be forced to cut back on food or transport. There is a growing fear – and now growing evidence to suggest – that cuts are unfairly falling on the disabled.

For how long will young disabled adults be able to access the same activities and support as my sister in such a climate?

This week, Raana is back in Hampshire, getting stuck back into living, learning, socialising and working. Her work in the Lantern Community’s amazing shop, for example, now includes more responsibility for stock pricing, something of which she is very proud. Raana has so far not only achieved more any of us can have hoped for, but there’s a very real sense that there’s much more to come.

And I think for my parents, who know they shouldn’t but can’t help but compare Raana’s development with that of her two older siblings, it’s worth noting that I’ve certainly never been in a carnival parade and now I’m not the only one in my family to make the front page (note the tiny pink and white wand-holding figure in the centre of the throng). The only difference is that while I can write the news, I’ve never actually made it.

Breaking stigmas about learning disabled teens

Hardly earth shattering news that teenagers like playing music, chatting at coffee shops, learning to cook (if their parents are lucky) and hanging out with their mates – but how often do you see learning disabled teens doing the same things?

Young people with learning disabilities can face massive barriers when it comes to enjoying the same things as their mainstream peers – often because of prejudice rather than because of a physically inability to cope with the task involved.

I’ve had the misfortune to experience this prejudice with my sister, as have the family of 12-year-old Gregor Morris – forced to leave a West End show for laughing too loudly (it was Wicked for crying out loud – not Chekov).

Which is why we need more of the kind of ad campaign that Mencap’s just launched. The learning disability charity filmed Ellen Goodey, Ben Morse, Kirstie Andrews, Matthew McCarthy and Dharmesh Ladd carrying out everyday tasks like any other young people.

Now I can’t stand reality TV, but frankly, I’ve never been more pleased to watch a bunch of young unknowns doing extremely ordinary things.

Ben Morse at the keyboards in the Mencap ad

Mencap’s new ad, says Mark Goldring, the charity’s chief executive, is a step towards a more inclusive society: “We need to see more positive role models of people like Ellen, Ben, Kirstie, Matthew and Dharmesh on our TVs and in public life to help remove the stigmas associated with disability.”

Matthew McCarthy cooks in the Mencap film

The national TV, radio and print advertising campaign aims to raise £300,000 – the short film explains that if you buy any Procter and Gamble products available at Co-operative Food and Co-operative Pharmacy stores, you help raise funds for Mencap and sister charity ENABLE Scotland as part of The Co-operative’s Charity of the Year Partnership. The promotion will run for six weeks nationwide, with Procter and Gamble donating 3p on each product sold from over 20 of their brands. So now (can’t resist this…) you can wash, and go raise awareness.

Mencap's Ellen Goodey stars in the new ad

Money raised will go towards launching a programme called Inspire Me, aimed at working with young people with a learning disability aged 16-25, their parents, carers, and local communities, to overcome the exclusion and prejudice by providing activities and training, together with volunteering and employment opportunities.

You can watch the ad here:

Ben, one of the stars of the new ad campaign, also features in this previous Mencap film where he and his mother explain how he’s been verbally abused, spat on, pelted with stones and “too scared to leave the house” because of bullying. As his mother, Charlotte says, you can’t wrap a child with learning disabilities in cotton wool “because they’re not learning any of those things they need to learn to be indepdendent”. No better words to show why the campaign is worth supporting.

Art competition gives voice to youngsters struggling to be heard

Painting, by Jake Rose

Bold, intricate, colourful and thought-provoking – some of the artworks here wouldn’t look out of place in a city art gallery, but in fact these pieces are among the powerful creations produced by young people with autism and related conditions.

Earlier this month, to mark World Autism Awareness Day, a specialist residential college in Wales launched a national art competition (the works here are from the shortlisted finalists), Create! Art for Autism, open to those aged 11 to 25 who are formally diagnosed with an autistic spectrum disorder (ASD). The aim of Beechwood College is to show that art can not only encourage learning and instill lifelong skills but boost quality of life and future prospects.

The college cares for students aged 16 and over with ASD and teaches students to articulate themselves through creative programmes including music, 2D art, 3D art, digital media and horticulture. As Beechwood principal Darren Jackson says, “art and creativity programmes can transform the lives of young people who previously struggled to make themselves heard”.

Drawing by Alex Fox-Robinson

There were more than 350 entries from 52 different schools from all over the UK with entries also sent from as far afield as India and Croatia. The judges have chosen six finalists in each category of 2D art, 3D art and digital media art, who will attend an awards ceremony at Beechwood College on July 24th. To support and recognise the work that schools undertake, both the winners and their schools will receive prizes and there is also a “teacher’s choice” allowing teachers to choose the winners.

Ceramic work by Nicola O'Leary

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 principal Darren Jackson.

Painting by Evan Findlay

The finalists’ work will be rolled out into a national art tour open to the public, first at The Old Library in Cardiff and then in London in September. Finalists and other artwork can be viewed here.

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.