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.
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?
Freelance journalist & editor Kate MurrayMy mum has multiple dementia. Sadly, there’s nothing unusual about that. The Alzheimer’s Society reports that there are now 750,000 people with some form of dementia in the UK.
For my mum, it’s a gradual decline into the night. She has her bad days – when she’s convinced she’s about to leave school and needs to find a job – and her better days, where she can just about remember her grandchildren’s names. But she certainly no longer has days where anyone who talks to her, even for a minute or two, might think she’s capable of making a serious decision about the money she spends.
That’s why I was so shocked, when going through her mail recently, to find a letter from one of the UK’s best-known charities, Save the Children, thanking her for talking to one of its fundraisers about leaving a legacy. ‘As requested,’ it read, ‘I have also enclosed a codicil form.’
When I spoke to the charity and told them how disappointed I was that they were targeting a vulnerable elderly person, I discovered that my mother was on a list it had bought a couple of years ago. She’d been contacted, the charity admitted, ‘several times’ over the last few months by fundraisers working on their behalf about making a donation or setting up a direct debit. Save the Children, to its credit, reacted swiftly. It apologised and immediately took my mother off its list, conceding that its telemarketers ‘should have identified she was not capable of making these decisions’.
This was not the first time my mum has been on the receiving end of charity cold calls and has, according to the fundraisers involved, expressed interest in making a regular donation. I have power of attorney over her affairs, so I, on her behalf, continue to donate to those charities she had herself identified before her condition deteriorated and she’s never ended up spending money she can’t afford on new donations.
When I started to have a dig, I soon soon found my mum’s experience was not unique. Take a look at the Alzheimers Society chat forum, for example, and you’ll see pages of discussion about dementia sufferers being cold-called, with, in one case, a fundraiser for a reputable charity apparently going round door to door in a sheltered housing scheme and even filling in the direct debit form when the potential donor was unable to do so.
Charities use cold calling, whether it’s on the phone or at the door, because it’s effective. According to the Fundraising Standards Board, the independent self-regulatory body for UK fundraising, its members made more than 4.7 million fundraising phone calls in 2009, and more than 22 million door to door calls (including collections) – both significantly up on the previous year. But the number of complaints is up too. And with charities facing a squeeze on donations in these tough economic times, it’s not unreasonable to fear that the pressure on fundraisers to get results will increase.
The Charity Commission, in its guidelines on fundraising, says ‘charities should not use any methods of fundraising that may damage public trust and confidence in charities’ including ‘targeting and pressuring vulnerable donors who may not be able to afford or understand the terms of the donation or ongoing donations they are committed to’. And in its code of practice on legacies the Fundraising Standards Board says charities ‘ought to pay particular attention when communicating with vulnerable people’.
Charities may do the right thing when they’re challenged. But is the message getting through to the fundraising frontline? Professional fundraising companies which work on charities’ behalf say all the right things about ‘high quality’, ‘sensitive’ and ‘no pressure’ telephone fundraising. And the Direct Marketing Association’s code of practice specifically highlights the need to ‘take particular care with vulnerable customers’. But marketers are highly focused on results – donors signed up and cash raised – and as I’ve seen that means the reality can fall way short of the theory. It seems to me that the confusing array of organisations and codes – yet another self-regulatory body, the Public Fundraising Regulatory Association, oversees face-to-face fundraising – may be part of the problem. Shouldn’t the Charity Commission, which doesn’t directly regulate fundraising, have a more hands-on role?
Of course charities need to reach out to new donors and of course they need to use cost-effective means of doing so. But sensitivity, a strong ethical approach and good training are all essential. So too is a tough line on those marketing teams who don’t stick to the high standards charities subscribe to. Otherwise I’m not convinced a fundraiser, working for a telemarketing or door-to-door team, will really give the thought they should to the donor.
Charities are under pressure for cash. But they rely on goodwill and can’t afford to squander it with shoddy sales techniques.
Of the many thorny issues the voluntary sector is grappling with, bidding for public service contracts is among the biggest. The sector was therefore taken aback in December, when the government allowed less than a month for its modernising commissioning consultation. Read my article for The Guardian’s voluntary sector network here.
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.
The Miller Road project, Banbury, where disparate agencies are tackling youth housing as well as training. Pic: John Alexander
Aiming to crack two of the public sector’s greatest challenges – homelessness and the Neet issue – is daunting enough. Doing so with a multi-agency partnership spanning the sectors of local government, charity, education and housing makes the task even more ambitious. Read more about the scheme in Banbury in my Guardian Public article today.
When Almaz Berhanu Yesbasa fled Ethiopia for political reasons, leaving behind her husband and four daughters, two years passed before she saw her family again. She was granted refugee status in the UK but did not know where her daughters were until the British Red Cross traced them, supported Almaz with Home Office visa applications and brought about the family’s reunion in 2006. Read more about a new charity, the Refugee Welcome Trust, which helps to reunite refugees separated from loved ones, in my Society Guardian article.
Alex Scott, a 20-year-old psychology undergraduate at Surrey University, is spending a year with youth volunteering programme City Year London. The project, launched in September, involves 18-25-year-olds spending time in London primary schools, mentoring and supporting those younger than themselves. It is based on a successful American model of civic duty that began in 1988.
I’m sure everyone is weary of hearing how they can make a difference. We may tire of saying that you’ve changed the world by holding the door open for the person behind you or by bundling loose change into the upturned hat of a homeless person. True, being generally polite and selfless to one another is an honourable feat, but I’m writing about an organisation that requires a little, no, a lot more, commitment.
I’m a team leader for an organisation called City Year, which has emigrated from the USA after establishing itself in 20 other locations before reaching London, England, and it aims to have the same success that it has achieved across the Atlantic.
This year, City Year London has called together a diverse team of over 60 young people to volunteer a year of service with the agenda of making a real difference to the communities it reaches.
Primary schools in Hackney, Islington and Tower Hamlets were signed up to receive a group of 18–25 year old full-time volunteers in their school to act as role models and mentors in the key stage two (seven to 11 year olds) classes. As Team Leader for the Towerbrook team based in Sebright Primary School in Hackney, I lead a group of nine volunteers who are there from when the first child arrives in the morning, to when the last child leaves when school ends. The team take part in after school clubs, breakfast clubs, spend time in the playground and lunch hall every day and are a constant presence in the classrooms; often targeting children that teachers identify as needing extra support that may have not always been able to receive.
But as amazing as this may sound, the volunteers that City Year accepts through a strict interviewing process aren’t superheroes, no matter how they may look in their uniform red jackets and Timberland boots. Full time volunteering isn’t easy; and City Year asks a lot of its ‘corps members’. Expenses are offered for up to £100 per week and there is the opportunity to receive a Citizens Service Award of up to £1000 upon graduating the year of service, but that £100 can only get you so far and the early starts and late finishes definitely adds a few premature wrinkles. So why do it?
I heard about City Year through an advertisement on a placement website, having searched for year long placements in London with the aim of taking a year out of my University studies to work in a professional setting. I was offered the role of Team Leader, and although I approached it with trepidation, I have been able to see the developments that my team have made first hand. Sebright Primary School has welcomed us with patient and trusting arms, allowing us to take real responsibility over our effect in the school.
First thing in the morning, the volunteers run exercise routines known as physical training with the children in an attempt to combat lateness. During the school day, each volunteer has been assigned the task of daily supported reading for Key Stage One children, and a select few have the responsibility of improving the phonic skills of students who require that extra bit of guidance so that they don’t get left behind. The volunteers have taken on the task of an after school club as well, a sort of ‘citizenship’ session where the children who attend are taught skills and acquire knowledge that will help them both in and outside the school setting.
What has impressed me the most, however, is how well integrated the volunteers now are with the children at the school. It doesn’t seem to matter how early they have to wake up or how late they get to leave, each volunteer will always have a swarm of children around them at playtimes, and will never be too tired to join them in a game or listen to their stories for the week. I will only be in my position as team leader for a year, then I will return to university, but I have high expectations for all that City Year hopes to achieve based on how my team have performed thus far.
My time so far with City Year has made me a more confident and self assured person, but more importantly, it has taken a chip from my cynicism and shown me that through spirit, discipline, purpose and pride, anyone can hope to make a difference to the world around them.
There are growing ripples of activity in the social enterprise sector caused by efforts to plug the skills gap and boost the role of continuing professional development (CPD). Click to read my piece for the Guardian’s online social enterprise network.
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.
