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.

Young people and a load of bull

Kayla Whiting lives in Hackney, a former administrator for media social enterprise Poached Creative, she project managed the short community film Life’s A Bitch which got local young people involved in media and raised awareness about Staffordshire Bull Terriers. Here, she explains how and why she did it.

Young filmmaker Kayla Whiting and her staffies

I did the film because … I wanted to defend the breed of dog and get people in the community to think before they stereotyped the dog and also give the young people an opportunity to learn valuable media skills.

My aim was…to produce a piece of footage that would change people perception on Staffordshire Bull Terriers.

The hardest thing was…keeping the young people engaged with the project and taking responsibility of all the paper work.

The most rewarding thing was…knowing all the young people enjoyed the experience and learnt new skills; which helped them back into training.

I funded it by…applying for funding from funding body Mediabox with the help of Poached Creative and youth-led media group Mediorite.

My tips for others wanting to do the same are…to keep the work as practical as possible. Make sure you create a strong bond with your team.

The biggest problem for communities today is…young people not being able to get jobs and progress in fields they would like.

If I could have a word in David Cameron’s ear I’d… tell him to make politics more understandable and engaging.

My inspiration is… being a young person myself. Being able to help other young people and help them to work towards their dreams as I am.

In 10 years time I want to be…a millionaire!

How Roma integration could be child’s play

It is a simple act that speaks volumes about the barriers that have been broken; a young Roma boy hands a flower to the play worker he had been so challenging towards just two weeks ago.

The scene took place in August at a groundbreaking playscheme run by social enterprise the Big Life group which encouraged Roma children aged 7-11 to mix with their local Manchester counterparts.

As Europe’s largest ethnic minority, the 12m-strong Roma population might be dispersed across the EU, but it is unified in the discrimination routinely faced by its people. From being moved on from traveller sites to outright repatriation, Roma families live in poverty and are reluctant to contact statuary services fear being moved on or suffer harassment.

Negative perceptions of the Roma community in Manchester along with an increase in the number of Roma people wanting to sell The Big Issue in the North led to the launch of the Big Life group summer play scheme (Big Life owns the Big Issue in the North). Open to all children living in the Longsight area of Manchester, it aimed to break down barriers between the communities and reduce the perceived or actual nuisance behaviour over the summer.

The scheme was publicised through leaflets given out during the social enterprise’s family support sessions and through local children’s centres. Word of mouth also encouraged Roma children to access the project.

Children doing al fresco craft activiites at the Big Life group summer scheme

The scheme, jointly funded by Manchester city council and The Big Issue in the North Trust, did not charge participants and 60 children registered across the month-long scheme with a total of 30 per session. Take up was even; 52 % Roma registrations and 48% from other communities.

Project leader Daniel Achim recalls that the scheme got off to a shaky start: “At the beginning all children seemed to be rather slow to action the requests of the play workers. The children were testing the boundaries and the workers had to repeat the same information over and over again in order to get a result.”

Yet, as Achim says, by the end of the playscheme there was a major transformation in the behaviour of the children in terms of respect and politeness to staff. “In a safe and welcoming environment where they were not discriminated against children learned to relax around each other, they learned to share play equipment, they learned to wait their turn.”

Children at the Big Life group scheme in August

While entrenched attitudes towards those who are different can be hard to shatter, the Big Life playscheme shows how to break down barriers through play. Any mutual suspicion was soon overcome. Encouraging integration through play and from an early age is starting to reap rewards.

As Achim says, often the tensions tended to be between children from the same backgrounds: “Sometimes it is easy to see differences between communities – when really it is just kids being kids.”

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

Housing’s X factor is tenancy support

Jane Forster is a realist. ‘Homeless people with chaotic lifestyles aren’t the most attractive tenants to private landlords,’ she says.

It’s a realism that sometimes seems to be lacking among the policy-makers planning a bigger role for the private rented sector in providing homes for those most in need. The government plans to allow councils to discharge their duty under homelessness legislation with the offer of a home in the private sector in its consultation on the reform of social housing – whether or not the applicants agree.

The move, ministers say, will prevent applicants insisting on being offered social housing and will mean would-be tenants spend far less time in temporary accommodation waiting for the offer of a home. But are we really ready for a big expansion in the use of the private sector to house homeless people?

Can tenants, who are often vulnerable, simply be placed in the private sector and left to go on with it?

The experience of people like Jane Forster suggests that we will need to see a concerted effort to make the homeless tenant/private sector match-up work.

Forster is income generation officer at Mansfield District Council. Mansfield has been running an impressive scheme which offers dedicated support to both tenants and private sector landlords and which has just been a finalist in the Guardian’s public services awards.

The Multi Agency Rented Solution scheme – or MARS – is, despite its name, a down-to-earth solution to the problem of tenancy breakdown. Applicants from the council’s waiting list are offered help in getting money from a credit union for advance rent payments and then given ongoing support to help them stay in their new home. Landlords too have access to liaison officers who help them

The results are impressive. Since it was launched, it has helped some 120 people into a new private sector home, brought 48 empty properties back into use and cut repeat homelessness by 63 per cent. The scheme has been such a success, it is now being rolled out as a social enterprise.

But it’s not an easy fix: making an initiative like this work demands commitment. As Forster puts it: ‘The X factor is tenancy support. That’s what makes it work, when people are vulnerable and don’t have all the skills to live their life, they need ongoing support.’ Mansfield is not the only housing provider doing valuable work in this area.

Look Ahead Housing and Care, for example, has been a strong advocate of the need to make good use of the private sector in housing the ex-residents of homelessness hostels in the capital. Its approach has involved preparing residents for a move into the private rented sector and offering ongoing support as they settle in.

Landlords benefit too, getting the reassurance of proper assessments of their new tenants plus ongoing help, like mediation should the landlord/tenant relationship start to break down.

When it launched its plans for councils to make greater use of the private sector to house those on their waiting lists, the government said only 7 per cent of homeless applicants currently accepted a home in the private sector, compared with 70 per cent of cases which ended with an offer of social housing. We could see a big shift in these proportions once the new rules come in.

The element of compulsion in the government’s proposals doesn’t appeal. But it’s true that with a dire shortage of social housing, the private sector can and should be seen as offering a viable option for many people who would otherwise struggle to get a home. But the approach needs to be backed by proper, ongoing support. Otherwise we risk pushing some of the most vulnerable in our society into homes they will struggle to sustain.

Wonder women and why we need them

For me, it was an eclectic yet potent combination of Wonder Woman, Kate Adie, Blue Peter’s Janet Ellis and Margot Fonteyn. Although I’ve yet to perform an arabesque while reporting from the frontline and deflecting bullets armed with nothing but golden bracelets and a roll of sticky backed plastic, I did at least pick some interesting female role models when I was growing up.

While it’s unfair to say that today’s girls and young women only dream of becoming reality tv stars, pop singers or footballers’ arm candy, it’s usually the case that the most successful women in the public eye tend to be very famous, very rich and very thin.

Campaigners at Pink Stinks are doing much to champion real, strong female role models who are “inspirational, important, ground-breaking and motivating” and today a new drive is launched to ensure that younger generations also have a range of professional female figures to look up to.

The business group everywoman has created the Modern Muse drive to inspire and engage the female business leaders and entrepreneurs of tomorrow by showcasing successful women in business. Although the majority are women in business and the private sector, there are – admirably – several powerful female role models from the public sector such as former Nurse of the Year Grace Vanterpool and Gill Evans, one of the country’s most senior policewomen.

Karen Gill, co-founder everywoman says: “Younger women today tend to have a strong focus on celebrity role models and we want them to be exposed to a much broader canvas, to women who have built businesses or are working in major organisations, whose lives are equally glamorous in very many ways.”

Modern Muse project aims to reach a million young women and girls over the next three years, to inspire and motivate them to look at business careers and entrepreneurship. The project will showcase stories of real women “whose experiences encompass ambition, passion, success and failure; showing that business is fulfilling and can also be fun and rewarding”. Many of the Muses will speak at community events and in schools, with the aim of nurturing female talent and encouraging women to start, own, run and grow companies.

Grace Vanterpool says: “Some of the role models that young women aspire to can be linked to their cultural or ethnic background and parental influences. Many young women in African Caribbean community aspire to become professional ‘divas’ and mothers – we seem to be less focused on getting involved in business. This may be due to the fact that there are not many successful business women who could become mentors to women from the African Caribbean community, and also to promote the benefits of setting and running a business.”

Vanterpool got involved with Modern Muse she wants her experience to inspire other women “to be the best that they can become”. She recalls, for example, that among the most patronising comments she’s had over the years are those that downplay her role. “Comments such as I am “only a nurse “, brought on by the perception that doctors who are predominantly male are usually the ones seen in senior leadership roles like mine.”

Metropolitan Police Detective Inspector Gill Evans says her motto is “it is not because things are difficult that we do not dare, it is because we do not dare that things are difficult.” She adds: “I feel passionate about inspiring the next generation of young women and girls to succeed whether it be in business or the public sector. I recall a number of times that I just needed to talk or run an idea past someone but couldn’t for fear of being seen as weak. I think that it is important that we continue to encourage young women and girls at every opportunity that they can reach their goals/aspiration regardless of their career choice.”

Modern Muse is launched with the publication of a book and a photographic exhibition by Mary McCartney. The book and exhibition focus on 100 inspirational female entrepreneurs and business women, personifying the ‘Modern Muse’.

Guardian Public Service awards; reaching the unreachable and support for prisoners’ families

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.

Saba Salman on social affairs