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.
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?”
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.
“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.
Gemma Eadsforth, 25, was in care from 15 to 18. Now a married mother of one, she lives in the North West and has been a LILAC (Leading Improvements for Looked After Children) assessor since January. LILAC is project funded by the Big Lottery Fund and hosted by the charity A National Voice which ensures looked-after children and young people are involved in decisions about their care and in the practices of the services that look after them. Here, Gemma explains how those who have experience of care assess how well services involve their looked after young people, deliver participation and LILAC standards of care.
The aims of LILAC (Leading Improvements for Looked After Children) are to make sure that young people are receiving the right care that they deserve and that they’re listened to by the professionals. We want to make sure that the service is listening to the young people’s views about what they want to change in the care system and be able to chase that up so the young people feel like what they say matters and the young people have a better experience.
I was in care from the age of 15 to 18. My experience was positive but some people have different experiences where they don’t feel like their voice is being heard.
I got involved in LILAC because I wanted to make sure that the young people who are coming into the care system or are already in the care system understand what their rights are and their voices are heard by their social workers or carers.
The simple things to me from my experience was when we wanted to have some sweets or chocolate we had to ask a member of staff to open the cupboard as they had locked it because we all used to eat it in one day, well not everyone but some people did. But if you were in your own home you wouldn’t have to ask and you wouldn’t have locks on cupboards. They say ‘treat it as your own home, make yourself at home’, but how can you when you have bars on your window or locks on doors? It made me feel like it was a secure unit, that it wasn’t home, that I wasn’t trusted and sometimes like it was a punishment for something I hadn’t done.
Some young people don’t like talking to their social workers or carers about what they want to change or anything that is going on with them that they are not happy with as they haven’t had the experience that they have of being in care, so the main reason I got involved in doing this was because I’ve had the experience of being in care and can relate what they are going through so, I feel like I would be the one who they could talk to.
By being involved in LILAC you get to see what is going on in different local authorities and how they run things. Also get to meet young people who are either care leavers or still in care. The main rewarding thing about being in LILAC is real achievement for me and my team to show that not every young person who is/been in care is a bad person or not able to achieve anything because they have been in care as the media only cover the negative never the positive.
In a recent assessment I was impressed by the facilities that were available but disappointed by the lack of involvement that young people had.
We have seven standards to assess on. The main things to have in a care setting are to make sure young people are listened to, to have a voice and be heard. Being corporate parents, would you treat your own children like this?
Every time we do an assessment we always do feedback to let them know how they did or what they need to do and offer our support if they need it. Because we assess on the seven standards they need to get all seven before they get the full LILAC stamp to say that they have been ‘LILAC-ed’ so when the inpection body Ofsted comes round, they can say that young assessors have been here and done assessment on our local authority and we have passed their standards.
If I had one wish for the government to improve things for children in care I’d ask them to try and remove the stigma about being in care. Make it more positive so young people don’t feel like they’re to blame for being taken into care.
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.
A suggestion of boiled cabbage, laced with a faint, medicinal whiff. Magnolia-coloured walls lined with chairs turned towards a television set. And staring at the screen is a sea of blank, wizened faces attached to bodies waiting to die; ah the great British care home.
Just think, if the old dears are lucky, someone might even switch on the telly.
Unless, that is, this is the sort of care home that runs adult learning programmes for the elderly (check out the You Tube film) organised by social enterprise Learning for the Fourth Age (l4a).
At the Aigburth care home in Leicestershire, for example, here is an OAP enthusiastically playing tennis on the Wii, egged on by fellow residents, there is a 90-year-old emailing her great-grandson and everywhere is an attitude that sticks two fingers up at the stereotypical view of old people: “When you get to your 90s you feel you want to keep up with things.. it makes you feel you’re up with the world.”
Now I’m not usually one for Oprah-style outbursts, but even I found it difficult to watch the clip without smashing the air with a ‘You go girl!’ as the web-savyy pensioner tapped out her email.
As well as getting residents online, the care homes involved in l4a schemes run music, foreign language, flower-arranging and art sessions – basically any form of learning that people take an interest in. Because sessions are staffed by volunteers and local young people, the byproduct is community cohesion and intergenerational contact.
The experience of care home residents such as those in Leicester isn’t just a nice story. It could be another piece of the jigsaw when it comes to the crisis in care for the elderly.
Life expectancy is rising and by 2026, the number of people aged 85 and over will double and the number of people aged 100 and over will quadruple. In some 20 years’ time, around 1.7 million more adults will need some sort of care or support. Just last week the global dementia bill was said to be £388bn, according to the World Alzheimers Report. While I’m certainly not suggesting that getting ocotgenarians online will solve the crisis in care or provide the answer to one of modern society’s most pressing health problems, but surely anything that improves quality of life and cuts down healthcare bills is worth exploring further?
Programmes such as those in Leicester, says NIACE (the National Institute for Adult Continuing Education) transforms people. They are more interactive with each other, with the staff and with their families and are on fewer sleeping pills and anti-depressants; a reduction of 50% at one home that’s running adult learning scheme programmes.
Staff also reap rewards. As well as the fact residents are more motivated, they interact with them on a friend rather than carer-patient level. Anecdotally, absenteeism is rare and turnover low.
On the business side, money is saved because there’s less reliance on sleeping pills and anti-depressants – imagine the savings if this was replicated in every care setting in the country.
Politicians and policymakers take note; public finances are in a parlous state but if your granny has a wii, you might have to spend fewer pennies.
* Age UK recently launched a digital manifesto for older people with the Foundation for Art and Creative Technology, the digital media institution. It demands an end to digital illiteracy among the elderly by 2020. The manifesto argues that because the Internet is the public’s primary source of information, being able to surf, blog, or take part in community TV broadcasts not only empowers people but helps breaks the isolation that older people often experience.
Despite the fact that more pensioners have Internet access at home than ever before – almost 40% now compared to 11% 10 years ago – campaigners say it’s vital that older people are not left behind.
FACT says the issue is one of social justice that as it promotes localism and active citizenship.