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”.
Above, young carers talk about their role in a Carers Week film.
Next time you feel fed up with doing the household chores, think about Ryan. At 13, he cooks, cleans, does the laundry and helps both his disabled parents get around the house. His father has Crohn’s disease and his mother is disabled.
Aside from the physical requirements of his role as a young carer, Ryan shoulders a huge amount of emotional stress; life is unpredictable because his parents’ health varies from day to day. Getting ready for school in the morning, for example, is hard because he worries about leaving his parents alone and fears his dad will be in hospital when he gets home. The teenager gets frequent headaches, stomach aches and suffers from irritable bowel syndrome, all of which his GP says is stress-related. It is easy to see how being a young carer can adversely affect education, health and wellbeing and lead to isolation and anxiety.
Ryan, who is lucky enough to be supported by a young carers project run by the charity Action for Children, is one of an estimated 700,000 children and young people who have caring responsibilities. Young carers represent over 10% of the UK’s 6m carers, the group of people highlighted in Carers Week this week.
Action for Children is using Carers Week to demand that the government and councils do not ignore the plight of young carers. The charity has released new figures today which show that, in a survey of 23 Action for Children young carers projects, services supporting 1,192 young carers have had their budgets cut by up to 30%. A further 192 young carers are supported by services that have suffered budget cuts of 40% or more.
As Ryan says, he would be lost without support from his young carers project. “I really rely on that time with my support worker to express my worries. It’s amazing to share my experiences with other young carers who understand what it is like to be me. I love my parents but sometimes I get cross with them because we don’t have a normal life and I can’t do the same things as my friends. I used to feel guilty and bad about those feelings but after talking to other young carers I know that we all have feelings like that sometimes and its okay. The young carers project arranges all sorts of activities for us to help us relax and enjoy our time off from looking after our parents. It’s like having a little holiday away from all the worry.”
Budget cuts to support services for young carers save money now but run the risk of undermining young carers’ futures. As Hugh Thornbery, director of children’s services at Action for Children, says, there is already a huge danger that those who need care start relying on children and young people to support them even more as statutory service provision is decimated. This situation, as the charity stresses, effectively means young carers – many of whom spend up to 50 hours a week looking after a relative – bear the brunt of the country’s deficit and might end up paying for it with their futures.
* To find out more the impact of caring resonsibilities on the young, try also checking out the very good Victoria Cares site, a week-long campaign by children’s charity Spurgeons revealing a week in the life of young carer Victoria.
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.
London's 'best place to live' according to town plannersWith bursts of retro orange shooting through its autumnal colour palette and wooden floors framed by bright white walls, the purpose-built accommodation pictured here wouldn’t look out of place in some interiors magazines.
Beneath the well-appointed rooms lies a bistro and a health spa where you can get your hair cut and styled or enjoy a pedicure.
The building, which opened in November, has achieved code level four for sustainable homes. It is heavily insulated, rainwater is harvested for reuse and heating is sourced from photovoltaic and solar thermal technology. A combined heat and power source also produces electricity, with any surplus sold to the national grid. The entire complex is wired for super-fast broadband.
Little wonder Ewart House has just won a ‘best place to live in London’ award in the Royal Town Planning Insitute’s annual London Planning Awards.
Ewart House's hair salon
A boutique hotel or maybe the latest urban eco-housing?
The only giveaway that Ewart House might in fact be sheltered housing is the fact the ground floor ‘spa’ also offers assisted bathing and the pedicure is really, well, more chiropody. Look more closely and you see the handrails lining the walls and the discrete pacing area for vulnerable residents. The decor and furnishings are also colour coordinated to enable residents with limited vision and dementia to recognise which part of the building they are in; no institutional signage here but subtle ways for residents to get their bearings. In a separate wing with its own entrance are seven flats let to younger people with disabilities and the building is intended to act as a community hub.
Ewart House appears to have substance as well as style; this isn’t just fashionable living for the frail. The extra care sheltered home for frail older people, including people with mild dementia, contains self-contained flats for 47 residents. Almost all flats have a private balcony and some are designed for couples whose fragile health prevents them from sharing a bedroom.The weekly rent and service charges are £135.
The ground floor bistro, Ewart House
The project is a partnership between housing association Harrow Churches (HCHA), which manages the building and provides day time support, and the charity Creative Support, which provides specialist support staff on call 24-hours a day.
With a recent report by the Alzheimers Society suggesting that 50,000 people in the UK are being forced into care homes prematurely, Ewart House has three flats designed for people with mild dementia and the staff are trained in dementia care.
The three-storey building, designed by architects JCMT and styled by interior decorators Stanbridge Interiors, was built using a £6.3m loan from the Homes and Communities Agency, a £3m loan secured by HCHA from Santander and money raised by leasing part of the land to development partner Octavia Housing. Harrow Council pays for employing two teams of staff providing personal care and support while housing support staff are employed by HCHA.
Despite the obvious benefits and official plaudits, HCHA warns the funding climate is a massive threat to creating similar schemes. Chief execuitve Chris Holley says: ‘We’re extremely worried that funding will not be available for more schemes like this despite the substantial social and financial advantages it offers over alternatives like residential and nursing care.
According to one elderly resident, William Fordham, Ewart House is a breath of fresh air: ‘The best thing is the freedom. It’s magic – I have my own flat but carers coming in and out. I didn’t know places like this existed.’ As William’s words suggest, why should losing your youth mean losing your desire for decent décor?
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.
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.
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.
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.
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
A 24-hour radio station for recovering addicts is among the new schemes in a Royal Society of Arts-led (RSA) project to put service users at the heart of their treatment and support, read my Society Guardian piece here.
My pieces this morning on two of the winners of the Guardian’s Public Service Awards held last night; Elmore Community Services and its fantastic work to reach the ‘unreachable’ with complex needs and the amazing support provided by Prisoners Abroad’s for the families of those incarcerated overseas.
