Category Archives: Learning disability

Learning disability: real freedom means freedom of movement

Real freedom, as Mary Pearson, mother to a learning disabled young person, says in the short film below, requires freedom of movement.

The film, by David Herman of the learning disability charity Camphill communities , is part of the ongoing campaign to help disabled people in care who want to live more independently but who are being prevented from doing so by funding wrangles between local authorities.

The cuts agenda combined with local government red tape means forcing vulnerable people (and their families and carers) through hoops if they want to move from one council area to another – and there’s no guarantee of success if you attempt this. But learning disablity campaigners are calling for funding to follow individuals. A sort of portable personalised budget and assessment system is what’s needed.

The film is part of the charity’s submission to the government-appointed Commission on the Funding of Care and Support which is due to report back in July. The scenes here offer a snapshot of the sort of rich community life that my sister is thriving in at The Lantern Camphill community.

Disco dreams: dance nights with a difference

Liz Astor, mother to 18-year-old Olivia, who has autism, realised how desperate her daughter was to socialize on nights out with her peers when, in response to being offered a packet of dates to snack on, the teenager blurted out (entirely seriously and with great indignation): “I want to go on a date! I don’t want to eat one!”

Many similarly amusing moments tinged with a serious edge have been enjoyed in my family thanks to my youngest sister’s grappling with the vagaries of the English language and her inability to take words anything other than literally.

There was the time she stormed home from school, complaining that she had been told to “puck off!” in the playground. My mother was caught between the pedant’s reaction of correcting my sister for mishearing the word (“Actually darling, it’s not ‘puck off’ it’s…”) and an anger-fuelled desire to advise her to tell her potty-mouthed peers to puck right off back (coining a new breed of Shakespearean insult in the process perhaps?). Instead, we checked there was no bullying involved and told my sister to maintain a dignified silence.

The silent treatment shut those stupid playground puckers right up, I can tell you.

I digress. Thanks to her daughter’s literal take on the date conversation, Liz Astor realized how much Olivia wanted to enjoy the sort of nights out her mainstream peers take for granted.

Spotting a gap in provision for young autistic adults in her local area on the Surrey-Kent borders, she launched a not-for-profit group, Disco Dreams, late last year. The specialist nights in a community hall in Oxted, Surrey, are aimed at 18-30-year-olds with autism or moderate learning difficulties. “Why shouldn’t young people with autism have the same opportunities as others their age?” asks Liz.

Autism charities offer vital support for the autistic and their families, and there’s some great work being done by inclusive arts charities, but even without taking into account the fact their future is under threat in the funding cuts, opportunities for young adults with autism to socialise is patchy around the country.

The Disco Dreams nights are tailored specifically for those with autism; the DJ is aware of when noise levels overwhelm the young people, a chill-out zone provides a quiet space and entry is £10 but free to carers.

Aside from the social benefits, the positive impact of music, exercise and dance in relation to a host of health-related conditions is well-documented. For example, there was a great BBC documentary last year, Autism, Disco and Me, which showed how disco dancing transformed a young autistic boy’s life

Back on the Kent-Surrey borders, the next Disco Dreams night is scheduled for tomorrow night, Friday 21, if there is enough interest (email discodreamsdance@gmail.com for more information). The whole project is funded entirely by Liz, Lady Astor of Hever. Plugging a gap in provision in this way is very big society, but not every community is lucky enough to have such philanthropic verve in its midst. Let’s hope the venture is successful and inspires similar events elsewhere, so Olivia gets to eat her date and have one too.

Why everyone should support One Month Before Heartbreak

I’m supporting the two-day online campaign, One Month Before Heartbreak, that took place this weekend against planned reforms to Disability Living Allowance (DLA), the disability benefit that allows tens of thousands of disabled people to get out and about from residential homes. The DLA consultation period ends on February 14th, Valentine’s Day.

In the words of blogger Brianb: “Many of us, concerned at the way the coalition government is bullying, victimising, stereotyping, abandoning and, stigmatising those of us who live with disability, have decided to publish blogs almost simultaneously to draw attention to these injustices being perpetrated”.

Given the warm glow the government wants to create with its big society approach, the cut seems even more unfair, and shortsighted, and as The Guardian’s David Brindle has highlighted, the cut is not only “the meanest and nastiest cut of all in the carnage that is sweeping through our public services” but is based on flawed reasoning.

Although individual campaigning organisations within the disability sector might have a history of being vocal, as a whole, individuals with disabilities and their carers aren’t much known for taking off their gloves and sticking their heads above the parapet. Until now. A huge, vibrant and persuasive online community of writers and campaigners is fighting injustice through blogging and on twitter.

As blogger Ned Ludd Carer points out, the cuts are “about locking up disabled people in their own homes and taking away the desperately needed care…This doesn’t have to happen. We need to stop these cuts before they do any more damage. We carers need to get our heads out of the sand and start shouting. We need to stop being the silent, heroic martyrs the press and TV love to wheel out for a nice heartwarming end to the programme. We need to be Carers With Attitude.” The gloves are off.

Arbitrary Constant has highlighted the main concerns for the disabled while you can also read Community Care’s blog for a litany of cuts that hit the vulnerable.

Anyone in two minds about supporting the campaign – and there are already 2,500 names on the online petition to recall the consultation – should read blogger Bendy Girl who argues that the cuts should be everybody’s business, not just an issue for the disabled and their carers.

As the One Month Before Heartbreak campaign stresses, 100 years ago “disabled people were institutionalised and kept out of the public eye so that the public would need not feel embarrassed to look upon a disabled person.” The removal of DLA will trap the disabled in their care homes. And that’s something best consigned to the history books.

Autism lifelines at risk of unravelling

It is Saturday morning and 13-year-old James Hope is desperate to get to his activity club. His dad, Jim, reaches for his coat, but James is frustrated at having to wait. He stomps off to the car and waits silently, brows furrowed.

This scene takes place most Saturdays but rather than tiring of what other parents might regard as a mild teenage strop, Jim and his wife, Alison, celebrate it. James has autism and they are grateful that their son not only has a regular weekend activity but that he is keen to get to it.

But the kind of lifeline the Hope family relies on is under threat thanks to funding cuts. Click here to read my Society Guardian piece on how progress on autism is at risk.

Are we losing the care in our communities?

Bill Mumford, chairman, Voluntary Organisations Disability Group
When the revolution of care in the community took place, the decision to close long stay institutions resulted in a new, big idea; normal lifestyles, in normal houses, in normal streets.

People found themselves discharged from hospitals into small group homes in virtually every town in the UK. These were shared houses registered as care homes operating effectively as shared supported housing in the days before the supported living drive but without the important security of a tenancy. For many it felt like not only a new life, but a better one.

But now, just as people are looking forward to enjoying this life, due to bureaucratic, regulatory and financial reasons, people are trapped in unwanted small registered care homes. These homes are now closing because of running costs or the need to meet national minimum standards and changes in commissioning practice which prefer supported housing over ‘care homes’.

The problem is these closures are not happening in a strategic or orderly way, so the people living there face the prospect of another move into the unknown.

Take John, for example. He has a complex disability and moved from a long stay institution in 1986 to live in the community. His funding came from the council (let’s call it council A) where his parents lived although his new home was based in a different local authority area (council B).

In 1990 John moved to a smaller house, still registered as a care home (as it was before the supported living options became available), but less rural and with more to do in the community. The new house was still based in council B’s area and the funding arrangements continued.

Over the last 15 years John and his housemates have enjoyed a settled and fairly contented life building up their local support networks. Recently, two of the other people living there have moved on, leaving behind John and a fellow housemate, Mary (she is funded by council C).

The problem is that the charity that runs the home cannot find new people to move in to fill the vacancies – it has continued to run the service at a loss for the past two years.

The inability to find people to join John and Mary has been largely due to the understandable reluctance of authorities to make referrals to registered care placements.

As a solution, the charity could de-register the accommodation so it is no longer classed as a care home, but if it does so, it will come up against two bureaucratic barriers. Firstly, local government ‘ordinary residence’ rules mean council B would have to take on the support costs for John and Mary (while councils A and C would relinquish all funding). Secondly, council B is reluctant to open up its procurement arrangements to recognise the charity as a preferred contractor so will not place people there under contract for supported living!

Unknown to John and Mary, the home is likely to close and they will be faced with a move back to authorities A and C, a part of the country they haven’t lived in for over 20 years where not many family members remain. The costs to authorities A and C are very likely to increase while authority B will lose a good resource that could meet local needs.

The Voluntary Organisations Disability Group (VODG) researched the issues affecting people with disabilities because of the Ordinary Residence rules in 1997.

Our 2007 report titled No Place Like Home recommended three actions: firstly to agree the principle of a person-centred approach to funding and placement, secondly for the government to issue guidance and thirdly to put in place a framework for funding to transfer between authorities.

In October the VODG published Not in My Backyard as a follow up and found that despite the fact that new guidance had been issued there was little evidence of good practice. VODG demands the government include the concept of portability of social care entitlement in the white paper on social care due to be published next year.

We must do right by people like John and Mary; they represent a particularly wronged generation of people. Regardless of promises for future reform we need a kind of national amnesty, one that ensures funding is in the right place, providers and commissioners are working in partnership and individuals are given a proper voice. Because putting people first is not just a one off action, it is an enduring commitment.

How to go off the scale on the Tory happy-ometer

When, where, why and how much were you last really happy? It’s important, because the government plans to spend £2m on measuring our happiness.

For me, it was 2pm last Saturday in a checkout queue in Sainsbury’s, Ringwood, Hampshire. The standout moment of happiness was thanks to my youngest sister, who has Fragile X syndrome, and the charity Camphill. As for how happy I was (forgive the veering into Tom Cruise-esque sofa-jumping territory), it was a pure, punch-the-air-feelgood that catapulted my stomach upwards and made me want to hug my fellow shoppers.

While I avoid supermarkets on Saturdays – they are the next rung down on the ladder of hell from a weekend family trip to Ikea – I would join that checkout queue every week if it made me as happy as I was a few days ago.

So, happiness policy wonks, here’s one way to spread the love.

It’s Saturday and I’m visiting my 21-year-old sister, Raana, at the Camphill Lantern Community in Ringwood which she moved to in September from a Camphill college in Wadhurst, East Sussex. The Lantern is an adult community for the learning disabled which aims to foster greater independence in those who live and work there. Supported by staff and volunteers, Raana enjoys life in a shared house, is proud of her work in the shop and of her new skills in the bakery, has joined a local gym and is planning her Christmas shopping in Bournemouth.

Saturday is her shopping day so we’re at the supermarket. I’m impressed that my crowd-hating sister ducks and dives through bodies and baskets like a retail pro while I’m all at sea in an unfamiliar store. My sister’s enthusiasm and confidence hint at what is to follow…

We queue and, as her shopping is scanned, I remember she needs to top up her phone card and buy stamps. From ordering in restaurants to buying train tickets, communication with strangers has always been tricky so, like the rest of my family, I’ve become used to speaking up for her. We usually encourage her to make a stab at speaking for herself but, with the queue snaking behind us, for practical as well as historical reasons, I launch into support-mode autopilot: “And can we have…”

But suddenly my sister pierces the air with: “Can I have some stamps please?’ and I’m left gawping while an unprecedented exchange takes place:

Checkout girl: “Of course – what sort?”
Me (eyes wide as you’d like the checkout aisle to be): “…….!”
My sister: “Book of 12, first class please.”
Checkout girl: “Anything else?”
Me: “RAANA!?”
My sister (nonchalant, in control, ignoring my beaming face): “Yes, a top up on my phone card please.”
Checkout girl: “That’s it?”
My sister: “Yes, I’m paying on a card.”
Me: (grinning, restraining a high five, elbowing Tom off Oprah’s sofa): “RAANA! YOU’VE DONE YOUR OWN SHOPPING!”
Checkout girl and my sister look at me. I feel silly, but very happy.

My sister was clear, confident, polite and – and here’s the thing – her behaviour would have appeared to most people to be entirely unremarkable. She fitted in.

It’s the little things in life that matter – running errands might not be your idea of achievement, but for my sister, making a shopping list or paying for something herself reflects her growing independence. She is benefitting from the holistic approach to social care and education that she has enjoyed since the age of 16, when we first came across the Camphill movement.

Me with Raana at a Camphill event earlier this year

“You’ve not replied to emails this week,” I say later. “I’m very busy!” she replies, indignantly. Raana is sometimes too busy working, learning and socialising to contact us – this is a sign of independence and security because when stressed, she bombards us with texts (my sister is phone-phobic, but I hope one day to have a telephone conversation with her). For the first time, she shares some common ground with her mainstream peers – the “too busy to phone home” line is not dissimilar to the one I’ve peddled since I was her age.

But the spending squeeze threatens to undermine the support provided by organisations like Camphill because the councils which fund those who live there will be reluctant to keep footing the bill. Local government bureaucracy and money wrangles along with government cuts to councils are huge threats to disability organisations.

Raana at her 21st birthday with her niece, Maya.

Cuts have to be made, but the axe is falling on those who need it most.

To return to the happiness survey, the correlation between happiness and strong welfare and social support is well-documented. For example, as social policy professor Alan Walker notes, ‘social quality’ is key to measuring happiness; he defines social quality as how much people are able to participate in society under conditions that enhance their individual potential and wellbeing. Social quality is commonly used in European social policy and, says Walker, the essential foundations of social happiness include health care, housing, employment-related benefits and additional forms of social assistance.

Money alone won’t ever make you happy, but taking it away from social support, and from those who need it most, not only adversely affects their well-being, but that of others around them. And what’s more, the support my sister and her peers receive today unlocks their potential, enabling them to play their part in society tomorrow.

I’m sure the £2m plan to measure the nation’s happiness will include complex statistical science and a multitude of boxes to tick but I quite like this rather more simple equation:
Vulnerable person + resources x specialised support = happiness

Caught in a trap: why the disabled can’t leave their care homes

From my Society Guardian feature this morning:
Anna McNaughton fell in love with the West Sussex seaside town of Worthing when she moved there two years ago. It’s a stone’s throw from Brighton, around an hour by train from London, and its bars, cafes and restaurants are edged by a tree-lined promenade. Having had a room in a shared house since moving, the 23-year-old wants her own space.

Some interesting comments posted about this article by Guardian readers are here.

Shades, strut and soul; a universal arts experience

Rapper Dean Rodney has a soulful strut, a powerful pair of lungs and a learning disability. Dark shades, smooth black suit, definitely supercool. I’ll be at the Royal Festival Hall on London’s South Bank tonight to see his band, the Fish Police, a fired-up trio that fuses hip hop with funk and punk and lists Japanese anime and fast food among its eclectic inspirations.

Fish Police met when musician and lyricist Charles Stuart trained two learning disabled youngsters, Dean (now Fish Police singer, rapper, bass and lyrics) and Matthew Howe (the trio’s equally cool rhythm guitarist) as part of a youth band based at disability arts organisation Heart n Soul.

Next month the Fish Police will be releasing their debut album, Cheeseburger Man (Herbie Hancock’s Watermelon Man for the McDonald’s generation?), performing at the Lincoln Center in New York and at Liverpool’s DaDa Fest, the UK’s largest disability and deaf arts festival. Their music is a fresh and freestyling antidote to the conveyor-belt fodder jostling for space in today’s uninspiringly plastic charts.

I came across Heart n Soul over a year ago when I heard about one of its artists, soul singer Lizzie Emeh. Lizzie broke new ground by becoming what’s thought to be the first learning disabled solo artist to release an album to the general public. Loud and Proud was three years in the making and produced with the support of Heart n Soul, 33 years after Lizzie’s parents were told never she would never walk or talk following complications at birth.

In 1984, musician Mark Williams (now Heart n Soul’s director) wanted to explore how music and art could make a difference in communities. He began running creative sessions in east London for a group of people with learning disabilities who went to the local day centre, The Mulberry Centre. Eventually The Mulberry Crew, as they came to be known, moved into a bigger arts complex in Deptford and became Heart n Soul, with the aim of working towards professional productions – not simply, as was then the norm, undergoing art therapy.

The charity now runs a hugely popular club night for people with learning disabilities, the Beautiful Octopus club, and has a consultancy arm to advise other organisations on setting up cultural events for those with special needs. It also employs people with a learning disability and markets arts events to the learning disabled.

The Fish Police, Lizzie Emeh and their other talented peers are also regulars at Heart n Soul’s summer arts festival which is based on the Beautiful Octopus club night. The event isn’t on most people’s summer festival radars, but it should be. Along with live music, the event a couple of months ago boasted a comedy stage, improv and open mic sessions, face painting, a massage tent, a chill out zone designed by the Brockley Jack Studio Theatre, cinema room, dance floor and VJs and DJs. Performance art is notoriously hard to pull off, but the trio of artists performing as Live Heart did so with panache, demonstrating why the Tate Modern recently invited them to perform. K:DNA showed off their inspired blend of funk, reggae and classical music while the Riki Jodelko Band were an amazingly tight soul-pop outfit, astounding when they covered Bill Withers’ Lovely Day and Bob Marley’s Could You Be Loved.

Best of all, I loved the inclusive nature of the event. The Beautiful Octopus invites everyone to have a good time, regardless of ability or special need. When you enter the world of Heart n Soul’s festivals or club nights, when you immerse yourself in the melee of fancy dress, fairy wings and face paints, when someone in a clown outfit tumbles head over heels into a perfect cartwheel right in front of you, whether they have a learning disability or not is irrelevant – what’s important is that they’re having fun. And it’s infectious.

Frankly, in this environment (compared to other events I’ve blogged about) it’s impossible not to roll with the good times. I’m working on my cartwheel for next summer…for tonight, the shades and soulful strut will have to do.

* The Beautiful Octopus Club is at the Royal Festival Hall, Southbank Centre, tonight (Friday 8 Oct) 7pm-12am. Entry is free.

What about a little cultural equality?

I always thought going to see a West End musical on a Saturday night would be intolerable. Turns out it simply exposed the intolerance of other people.

I recently took my 21-year-old sister, who happens to have a learning disability, to see the sort of shiny dance-a-thon that I’ve always avoided because of the incumbent hen groups and coach parties (intolerant? Me?). But it was her birthday and I was game, especially as her idol, ex-Hear’Say singer Noel Sullivan, was in the lead role.

The evening got off to a great start. We had a drink in a Soho bar, an old haunt that I’d never thought I’d be able to take her to, thanks to her dislike of noisy crowds. But we got there before it was busy, she leafed through her show programme, happy and excited.

En route to the theatre, I could feel my sister’s excitement mounting (something about how she shot through Piccadilly, wielding her rolled up programme like a crowd-dispersal baton, muttering “out the way!” to anyone in her path).

Her happiness was infectious. We took our seats a couple of rows from the stage. The lights went down. The curtain came up. Our problems began.

Her gentle thigh slapping became more enthusiastic, as did the clapping, whooping, jiving and singing (pitch and word-perfect, by the way) through each of the 20 musical numbers. The culmination involved vigorous hip wiggling to the “Greased Lightning” medley; legs akimbo, arms outstretched, index finger sweeping the stage horizon, left to right.

There she was – my wonderfully ecstatic sister, wearing her Grease t-shirt and an expression of unbridled joy.

There I was, squirming uncomfortably somewhere between the rock of seeing my sister so happy and the hard place of being with someone so outrageously flouting the Unwritten Rules of Acceptable Behaviour.

Where are the coach loads and fancy-dressed brides-to-be when you need them? Other than clapping, not one other blasted person stood up to show they were even having a mildly good time.

I suggested “just bopping” while sitting down. Bopping? The repression I felt physically was so intense, it had even sent my vocabulary hurtling back to Enid Blyton’s England! I suggested “not dancing” – a ludicrous option, met with an astonished “why?”. The stage was full of dancers and singers, music boomed out across the auditorium, why shouldn’t she show she was enjoying herself?

As the performance continued, we suffered much staring, several irritated glances and a handful of few tuts until finally a miserable-faced mother and daughter duo in front of us turned round and exhaled a violent “SHHHHHHHH!”, motioning angrily for my sister to sit down.

“What exactly would you like me to do?” I hissed through clenched teeth.

By the time the woman sitting next to me put her hand on mine, I was ready to recite the universal declaration of human rights; instead she restored my faith in humanity.

“She’s special, let her be,” she whispered. Unable to reply thanks to the lump that had suddenly taken up residence in my throat, I heard her say she had a granddaughter with Aspergers and, anyway, most people probably wanted to do what my sister was doing but were too uptight.

While I was fuming at the reactions of what was ultimately a tiny minority, the wise soul next to me made me accept that the “situation” was not in fact a “situation” but simply a bloody good night out for my sister.

So what to do?

One well-meaning friend who I talked to afterwards suggested a designated area in the auditorium for people with special needs “so they can enjoy the show and no one else will be disturbed”. Hey! Great idea! Why hasn’t someone else thought of segregation? Hang on – they did, what was it called now..oh yes – apartheid!

What we need is cultural equality, as promoted by organisations such as Arts and Disability Ireland which advocate the engagement of people with disabilities as audience members. There’s some good work around promoting disability access at outdoor events and several organisations lobby on such issues but there seems less around the actual inclusion of people with disabilities into mainstream audiences.

Anyone know of any schemes along these lines?

By the way, to the miserable mother and daughter combo, should I ever have the misfortune to clap eyes on either of you sorry people again, I’d (a) perform a citizens arrest for crimes against happiness and (b) present you with two complimentary tickets to a special musical that I reckon you’d love. Want me to arrange for you to meet the cast?