How can someone with learning disabilities or mental health issues possibly own their own home? With a long-established but seldom-used form of housing called shared ownership.
The power of the part-rent, part-buy scheme to transform lives is illustrated in a new report, Space to live, published today by social care and housing provider Advance and Disability Rights UK. I was involved in writing part of the report and met home owners like Xenia Kyriacou, who is non-verbal and has complex needs.
Once asked to leave a restaurant after showing challenging behaviour and overturning a table in frustration (she was overwhelmed), only a few months ago, in another local restaurant near the two-bedroom flat she part-owns in east London, Xenia enjoyed a birthday lunch, was presented with a card from the owners and offered a discount on her return.
The change has happened since she moved out of residential care and into her own place.
Home ownership encourages confidence and independence, as was obvious when I met some of the home owners like Xenia and learned more about their experiences. The increased stability can reduce the costs of social care packages and help people get involved in their local areas. The timely report comes as the government considers funding plans for housing for post-2015, including its home ownership for learning disability (HOLD) programme.
The fate of children in care in Scotland has recently his the headlines; care leavers need more support, say experts, if their life chances are to improve. And today Michael Gove has criticised the care home system in England. But what if some vulnerable children could be prevented from going into care in the first place? In a joint guest post, Daniel* and the support worker who helped him describe how a Scottish community-based alternative to custody and secure care helped him turn his life around.
Daniel*, 21, describes how he was supported by the charity Includem:
“I don’t even know if I would be alive had it not been for Includem. I was drinking all the time and taking drugs, valium, cannabis, ecstasy. I was fighting a lot with my mum and other people and ‘doing turns’ – theft, breaking and entering offences – to get money to spend on food and clothes. Things started to go wrong when I left primary school and when I was about 12.
I had a bad relationship with my mum – we argued all the time – and I was constantly getting thrown out of the house. I had nowhere to go so ended up on the streets. I was always in front of children’s panels and going into temporary care and then home again.
I wasn’t happy and could see that this [drinking and taking drugs] wasn’t the right thing to do but it was what was happening in my life at the time. I felt guilty about what I was doing. I wanted things to change but didn’t now how to make changes. I wanted things to be normal and to have a normal family life.
A social worker referred me to Includem; I worked with a few project workers until I clicked with my project worker who became the person who I felt I could work with. We spoke about goals and how to get there and how I was worthy of a better life.
My worker helped me when things were really bad at home; I could call the helpline at any time and Includem would come out and talk to me and my mum and make it ok for me to stay at home. They would meet with me at times when no one else would be able to – at the weekend, when I needed them I would contact the helpline and they would be there.
Includem helped me stay at home and they helped me get into training and never gave up on me. I respected them and they respected me. I felt hopeful that things could be different. They helped with all sorts of things – planning how to spend money on food and clothes to helping with how to deal with bad situations at home and how to get training to help to get a job.
They were there through everything – even during the night – when I lived at home, when I was homeless and then moving into my own place. They made me think that I was worthwhile.
Before I would just go out and steal things to sell so that I could buy new clothes. I learnt how to save money and how to spend it on food so that I would last. They taught me how to deal with situations with my mum – how to walk away from violent situations and how to stay calm.
Things changed for me because my worker listened and respected me so I trusted and listened to my worker. I got on with her and established a relationship – I started to feel hopeful that things could change. Includem listened and didn’t give up on me, even at the start when I didn’t want to work with them.
Now I live with my daughter and girlfriend and I have my own home. I try hard to be a good dad that my daughter can be proud of – I want her to feel loved and cared for and safe. I want a routine for my family and my daughter and I am trying to find a job.”
Karen McCulloch, Includem project worker, on how she supported Daniel:
“Daniel was referred to Includem at the age of 15 due to his drug and alcohol misuse, anger, aggression, and difficult family relationships. He was a persistent high tariff offender and was facing homelessness due to a chaotic relationship with his mother.
When we meet a young person for the first time we listen to what they have to say and let them know what we can offer. We talk through their lives and identify the areas that aren’t working the way they should and start to look at how these could get better. We identity goals and talk to them about A Better Life – a unique toolkit that we use. We let them know we will meet them on a frequent basis and that we will plan normal social activities where we can meet and talk.
We let them know we put them first and they can trust us – that we want the best for them. Often this is a first for young people who haven’t had proper care in their lives or someone to talk to and look out for them.
We gave Daniel intensive support in managing his anger, including practical support on issues such as how to remove himself from volatile situations. Daniel’s relationship with his mother was difficult, and Includem worked with her to set clear and consistent boundaries within the home.
Daniel and his mother used Includem’s 24 hour helpline, not only at times of crisis but for advice and support. Includem supported Daniel for whilst he was on an electronic tag, a period in secure care for his own safety, and voluntary transitional support into adulthood. Throughout this time, Includem supported and liaised with Daniel’s mother to maintain their relationship.
Daniel didn’t gel with his first project worker so we changed workers to someone that Daniel clicked with. Our model is relationship based therefore we are flexible and will try different workers with different young people for the right relationship to be established.
My first visit to meet Daniel was on a Friday night when Daniel was out with his care home – Daniel had none of his own clothes so I went to his home and picked these up and took them to him. We visited him throughout the weekend and supported him. We talked about ways to change things – and assured Daniel that his life could change with the right support and direction. We put a plan in place that we would work through together in order to meet outcomes.
We started to see real changes. We taught Daniel to listen to his “inner speak” – the voice within that said he deserved a better life and that he could make it happen. When he started to realise that he did deserve better, and how to achieve it, things started to change.
Daniel used the 24/7 helpline regularly as a support – he would phone if he had been thrown out of the house or was in trouble. He would call if he was arguing with his mother – on one occasion an Includem worker would be speaking to Daniel on the phone in one room, another would be speaking to his mother on the phone in another room and a worker would be driving to the house to help calm the situation face to face.
Daniel would forget basic things such as when to eat as sometimes he was living between people’s houses – we would remind him that this was essential and give him practical support on what to eat and how to budget his money. We would plan our contact visits with him around when he would receive money and would take him to the supermarket and show him how to spend the money wisely and make it last.
Daniel moved into his own home under a mainstream tenancy at 19 (he is now 21), and is in a settled relationship and doing well. He has created his own family – he and his girlfriend have a baby, and there is no social work involvement with the family at all. Daniel has accrued no court charges or pending court charges for fouryears. He’s very keen to get a job. His partner is looking to start college and his main aim is to build on his progress and continue to provide a happy and loving environment for his child and partner.
We have a “scaffold of support” in place – a team of three – a project worker, an assistant project worker and a mentor – assigned to each young person so that they can build links and relationships with more than one person. Every service we provide is unique for that young person – we fit our service to them, not the other way round.
Among our successful outcomes is the fact that 90% of young people we worked with in a project with Strathclyde police reduced their violent offending. And with 72% of referrals from the Clackmannanshire area, Includem prevented family or community placement breakdown.
The biggest challenge is usually at the outset when young people are wary of accepting help and opening up about issues. Another challenge is actually meeting up with young people on planned visits at the start– often they don’t turn up for planned meetings and we have to go looking for them.
You learn to be creative in situations like this – finding solutions to challenges such as this and others – and speaking to colleagues for advice and ideas in order to make contact. We constantly refer to our A Better Life toolkit for support and advice.
Includem operates 24 hours a day, 365 days a year. We accept any referrals via social work departments, courts and police. We never turn any vulnerable young person away – no matter what their situation is and how chaotic it may be.
‘Stickability’ is a word we have coined – it’s a key part of our service and is at the heart of what we do – we are persistent, we won’t give up on a young person and we will stick with them at all times during the support we give them.”
I’ve never thought of my sister, above, as a saleswoman – she can be engaging, encouraging, persuasive and talkative, but she’s never actually sold me anything other than an idea (usually about what film to watch; invariably a Bond movie).
So my family and I were impressed – and proud – to see Raana in marketing mode (above, resplendent with pot for raffle ticket cash) for the first time on Saturday (scroll down for a gallery of snapshots).
Raana, along with some of her peers, formed a veritable raffle mafia – but not only was parting with cash in a good cause, it was impossible to say no when the ticket sellers assured you “this one’s a winner!” (this was clearly a sales spiel – neither I nor anyone in my family won a single thing…).
The open day in the Lantern’s grounds – with flowers, plants and fruit and veg in early autumnal bloom, stalls, food and live music – marked the opening of a new house, Silver Birches, for adults with learning disabilities. The day was also a celebration of the charity merger between the Lantern and Seahorses. Seahorses is four-star holiday accommodation on the Isle of Wight run by, with and for people with disabilities (as well as for those without) – a B&B with a bonus, as I explained in a recent Guardian piece.
From the fruit, vegetables and plants on sale and display to the bakery produce and the range of arts and crafts including pottery and woodwork, the day showcased the talents of a creative and inspiring group of people. And one of them, running from stall to stall with a book of pink tickets and a broad smile, refusing to stop to chat to me (“I’m busy! I’m working!”), was my saleswoman of a sister.
Talking to my eight-year-old daughter about the fact I was going to blog about our day with Raana, she immediately suggested a title for the story. It’s so neat and accurate, I think it rounds off the post and sums up the event perfectly: The Lantern Stars.
Timothy Baron was among the first children in the UK to be diagnosed with autism just over 50 years ago. Timothy was in need of specialist education but autistic children then had no right to schooling, so his father, Michael, opened his own school, the movement became the Society for Autistic Children – now the National Autistic Society (NAS).
That was the 1960s; today, Timothy, who lives in residential care, is nearing 60. The first generation of children to be diagnosed with autism is now moving into older age. Ageing with autism brings not only the particular challenges of the condition – communication, social interaction or sensory issues – but the social, physical and mental health issues often experienced in old age.
Policymakers are aware of the impact on society of the ageing population, but the same focus has not been given to people with learning disabilities and autism.
Lutfur Rahman’s name is usually prefixed with the word “controversial”. It is an apt description of the first directly elected mayor of Tower Hamlets, in east London. He is the council’s ex-Labour leader turned independent mayoral candidate who won 2010’s election amid political intrigue, mudslinging and alleged links to Islamic fundamentalist groups – allegations he has repeatedly and categorically denied. His win, with 51% of the vote, handed Britain its first Muslim and Bangladesh-born executive mayor and the Labour party an intractable gulf between national leadership and grassroots activism. The rest of my piece is on the Guardian’s Society page.
A gap in a church wall speaks volumes about the history of disability in England; lepers’ squints allowed people with leprosy to see the pulpit and hear the service through a small chink in the stonework, without coming into contact with the congregation.
Images of churches with lepers’ squints are among hundreds included in a web-based project launched today by English Heritage. The Disability in Time and Place resource encourages the public to understand changing social attitudes to disability via England’s architecture and shows the influence of disability on the built environment.
As Rosie Sherrington, policy adviser at English Heritage says of Disability in Time and Place: “In essence we can track disabled in and out of the community and back in again by looking at the range of buildings they inhabited.”
The image-led project features institutions and landmarks, among them the Le Court Leonard Cheshire Home, often taken as the first meeting place of the disability rights movement where Paul Hunt began campaigning with other residents in care. The pictures are from English Heritage’s archive and also draw on historical images lent by the charity’s partner organisations.
Disability in Time and Place is being launched at the Graeae Theatre, Hackney (among the country’s leading fully accessible theatres) this afternoon with speakers including Tara Flood, ex-paralympian and director of ALLFIE (the Alliance for Inclusive Education), and architect and access expert Dr David Bonnett, whose pioneering work includes the refurbishment of the Royal Festival Hall.
Among the places featured is the Guild of Brave Poor Things in Bristol (above), the first meeting places for disabled self-help groups. The visual history also includes the Liverpool School for Indigent Blind, opened in 1791 by Edward Rushton, who was blind. Rushton’s school was the first in Britain that aimed to give people the skills to be more independent.
Other sites featured are churches designed for deaf congregations such as St Bede’s Church in Clapham and St Saviour’s in Acton, both in London (the latter is still used as a deaf church). They have dual pulpits, one for the chaplain and one for the interpreter, as well as bright lighting and raked seating to boost visibility.
English Heritage’s web resource is divided into six sections, each taking a specific historical period – the Tudors or the early 20th century, for example – and looks at the building types associated with it.
Sherrington adds: “In the medieval period we have the idea that disability was a direct consequence of mankind’s sin, and therefore a religious matter. However disability as a result of disease such as leprosy was widespread, and an ordinary part of everyday life. It was not understood in the same way as we see it today.”
Moving onto Tudor times, she says, much of the care provided by monasteries and the church was destroyed during the dissolution, having disastrous consequences on the lives of disabled people. Paradoxically, Henry VIIIs “fools” were people with learning disabilities paid to entertain the court. It was a privileged role and they were thought to have divine wisdom.
“The 18th century saw the idea of disability being a matter of physicality rather than morality,” according to Sherrington, “and providing for the disabled became a matter of civic pride. As such many private asylums and enormous hospitals for the war disabled (like the Chelsea Pensioners) were built.”
With the rise of asylums and workhouses, disabled people were hidden away (although Sherrington adds “ this was though of as a positive move enabling disabled people to receive the ‘treatment’ they needed”). With the 20th century came the attitude that many people had incurable conditions (Sherrington draws our attention to the rise of eugenics “and the perceived need to separate those who were ‘healthy’ from those believed to be ‘inferior’”). But then two World Wars resulted in the notion of “heroic disabled” and the emergence of memorial villages and specialist rehabilitation hospitals.
According to Baroness Andrews, who chairs English Heritage, the project “is a history of the nation’s buildings and of a significant proportion of our population which, until now, has gone unexamined and untold. It is the part of the history of every town and city, with the schools, chapels and hospitals which surround us all each day but it has remained invisible and silent.”
English Heritage worked with a disability history steering group which included disabled employees, disability history academics including Jan Walmsley from the Open University’s Social History of Learning Disability Group and Dr Julie Anderson from the University of Kent who specialises in war disability. Partners included ALLFIE (the Alliance for Inclusive Education). Other sources of advice, information and images include the Greater Manchester Coalition of Disabled People, Disability History Month, the Centre for Disability Studies in Leeds, Leonard Cheshire, the Epilepsy Society, New College Worcester. All the content has been translated into British sign language videos by deaf interpreters.
When social housing provider One Vision Housing (OVH) reduced its total management costs by £2.8m in five years, it was partly due to the fact it had been benchmarking its back office functions.
The Merseyside-based group spends less now on what it terms its regularly recurring front and back office management than it did in 2006, when it was formed after a housing stock transfer from Sefton council. As a large transfer organisation with a very tight business plan, benchmarking to encourage efficiency was key, says operational director of finance Gaynor Robinson. However, Robinson emphasises that “it’s not just about identifying savings, it is about improving business processes and prioritising your resources … it’s about quality and governance”. Read the rest of my piece on the Guardian’s voluntary sector network pages.
A damp squib of a sticking plaster, or what health secretary Andrew Lansley has said is the “most comprehensive overhaul [of social care] since 1948” and an end to the care lottery?
Most early reaction to today’s long awaited care and support white paper and its associated draft bill is firmly on the side of the former view.
I’ve yet to read all the detail, but while there’s a much-needed focus on elderly care, there’s not enough of a recognition for other sections of society needing care and support, and nothing to plug the funding gap.
As Merrick Cockell, chairman of the Local Government Association, told Radio 4’s Today programme this morning: “We haven’t got time to tinker around…We’ve got to look at radical change.” The LGA has said there is a £1.4bn gap this year between the money available and the cost of maintaining social care services. There’s a good run down of the council perspective on the LGC website and while this post from Ermintrude2 was written before the publication of the white paper, it’s a really good explanation of the issues.
While today’s announcement picks up some from the Dilnot report (Dilnot suggested a system for the elderly where the total cost of care would be capped to £35,000 and support to old people should be extended to those with assets of £100,000), any “victory” for common sense and civil society is bittersweet because it fails to lacks the cash to make real far-sighted change a reality. The proposals might well show good will, but there’s no financial way (this communitycare.co.uk piece relates to the vision for social work, which could be undermined by the lack of cash).
It is, as shadow health secretary is quoted in the Guardian’s politics live blog as saying, “a pick and mix approach to the Dilnot package”. So the government hasn’t taken up the “once in a lifetime opportunity” that Dilnot mentioned when he launched his vision of how to fix the social care system.
Among today’s main points are plans for an optional social insurance scheme under which people pay the government premiums to ensure that their costs for care and accommodation are capped, and a “universal deferred payments” system where councils lend money to those needing care, then recover the cash when the house is sold after death. Sound sensible – perhaps even familiar? That’s because it’s already in use – around 9,000 people already used deferred payments.
Today’s government press statement suggests we watch this space: “The government will continue to work with stakeholders to consider in more detail variants under the principles of the Dilnot commission’s model, before coming to a final view in the next spending review.”
Having already waited with bated breath for today’s long overdue white paper and draft bill, it’s unlikely that many will hold it much longer.
Here’s a flavour (by no means a comprehensive round up) of reaction on Twitter and the web to today’s social care white paper:
Richard Humphries, senior fellow at the King’s Fund: “There is a financial vacuum at the heart of these proposals which undermines the bold and ambitious vision for a reformed system set out in the White Paper.”
Julia Unwin, chief executive of the Joseph Rowntree Foundation: “Successive governments have failed to act. Without a sense of urgency more of us face insecurity and uncertainty as we age. The failure to address social care properly will only mean more pressure on the NHS thereby destroying all hopes of a sustainable and functioning health system in the future.”
Clare Pelham, chief executive of disability charity Leonard Cheshire Disability: “It is a question of fundamental decency that disabled and older people should be able to live their lives with dignity in Britain in the 21st century. We hear a great deal about the need to support older people through dignified social care, but it is important that the needs of younger disabled people are not overlooked.”
Mark Goldring, chief executive of Mencap:”The social care system is in crisis. Years of underinvestment and cuts to services have left one in four adults with a learning disability literally stuck in the home, isolated and at risk, with family carers at breaking point and scared about the future…We are reassured to see that the Government has committed to fund immediate reforms, but this promising blue print will never get off the ground if it fails to address the chronic underfunding in social care. The Government cannot delay any longer, and must now outline an urgent plan of how it intends to fund social care reform in the long term.”
Carers UK chief executive Heléna Herklots: “The measures set out in the draft Care and Support Bill would move from piecemeal carers’ rights legislation to the establishment of carers’ rights in government legislation and, for the first time, equalise carers’ rights with disabled people rights…But to make these rights a reality, what carers also need is a social care system with the resources to overcome years of chronic underfunding and rapidly growing demand. Those who face soaring care bills, service cuts and a daily struggle to access even basic support from the social care system, may see new rights in legislation as empty promises without the funding to back them up.”
David Orr, chief executive of the National Housing Federation: “We’re pleased the White Paper recognises that housing is crucial to the integration of health and social care, and welcome the investment to build more supported housing for older people and younger disabled adults…We need a health service that invests in services that keep people out of hospital, not one that simply treats them when they get there….the Department of Health needs to encourage local government and the NHS to pool budgets, focus on housing-based preventative services and set out its full proposals for the funding of social care – for today and for tomorrow.”
Nick Young, chief executive of the British Red Cross: “That the Government is accused of failing to address the social care crisis is no surprise. The scale of the funding problem is enormous and growing. It will take courage, creativity and tremendous degree of political will to solve. That isn’t going to happen overnight.”
@ageuklondon Though it contains some good ideas, the #carewhitepaper doesn’t go far enough. The problem of care will not go away and is getting worse!
@Sensetweets Deafblind people continue to be abandoned, as funding fails to materialise – our response to the #carewhitepaper
@TonyButcher #carewhitepaper – like excitedly looking forward to your birthday but then only getting a cheap pair of Primark socks – disappointing
@gary_rae If this is a “watershed moment” for #ukcare then we’re clearly drowning. #carecantwait #dilnot
@Marc_Bush Care crisis demanded decisive action. Today we got a holding statement…’ @scope rspnd 2 @DHgovuk #carewhitepaper http://tiny.cc/scopetocare
@WoodClaudia focus on deferred payments in #carewhitepaper due to absence of other funding ideas. It is option for some, not THE solution being proposed
@Ermintrude2 Disappointed that headlines about #carewhitepaper all seem to concentrate on selling houses to pay for care. System about so much more.
“I never imagined in a million years I’d be selling my body for drugs…I’m still doing it now… I’ve nearly been killed three times doing [prostitution]. I’ve been raped doing it.. as a result of that I got HIV doing it. But it’s easy money.”
These words belong to Angela (not her real name), 38, speaking to homelessness charity St Mungo’s (you can hear more from her on the St Mungo’s website here).
Her story highlights some of the particular issues homeless women are known to face more than their vulnerable male counterparts – prostitution and domestic violence, for example – which the charity is focusing on during its action week this week.
The week kick starts St Mungo’s new campaign, Rebuilding Shattered Lives, the aim of which is to give a platform to best practice and innovation relating to supporting homeless and vulnerable women.
Traditionally, homelessness services were designed with men in mind but in England over half of those living in temporary accommodation are women and a quarter of St Mungo’s 1,700 residents are women. Until just three years ago, women fleeing an abusive relationship were deemed intentionally homeless (and so didn’t have housing rights) and encouraged to return home.
Housing and homelessness campaigners have long argued for more attention to be paid to women and homelessness (a 2006 report from housing charity Crisis still makes for stark reading) given there can be additional factors in their lives which might push them into homelessness – domestic violence and abuse, for example. The true nature of women’s housing need can also be hidden as they opt to stay with friends or sofa surf between spells of rough sleeping. While they can access mixed housing, as opposed to female-only hostels, for example, there is an argument to say that that more widespread female-specifc, housing-related support would make recovery easier.
St Mungo’s 18 month-long campaign invites organisations, frontline staff and female service users themselves to contribute ideas on preventing women’s homelessness and supporting recovery. Campaign themes including childhood trauma and domestic violence, as well as educational and employment opportunities, and restoring links with families and children.
A recent survey of St Mungo’s female residents concluded that more than a third who slept rough say their experience of domestic violence directly led to their homelessness while almost half are mothers. More than one in 10 have a history of being in care.
It’s worth noting that, as well as the stories like Angela, there are other examples in the St Mungo’s campaign of how, with the right support, women have started to turn their lives around.
“Mel”, for example, was living and working on the streets for two and a half years before coming in. She told St Mungo’s staff: “I’ve never had any stability. I don’t get on with my family, I’ve always been around drugs and getting clean when you are around other users is difficult. But I’m getting there, slowly…When I moved in here a year and a half ago I was a mess and I just slept, catching up you know. Then I turned things around, turned daytime into time for ‘doing stuff’ and nighttimes for sleeping.”
She added: “To get your benefits and all that you need to get to appointments, you have to get out of bed and you need the right help. That’s what I got here, though it took me a while to adjust, to get my head stable. What you need is people taking you seriously, people listening to what you want. What people need to understand is that just because you don’t comply with their ‘rules’, don’t turn up or whatever doesn’t mean ‘give up on them’.”
As the campaign develops, it will be interesting to see what ideas and services for women like Angela and Mel are showcased and what changes, if any, the charity’s follow up surveys reveal about an issue that has only comparatively recently been given a specific focus.
I had to share the infographic below from learning disability charity United Response which, if you’ve not already seen it, lays bare the impact of cuts to disability living allowance (DLA), the benefit that helps people with care and mobility costs.
Not that a war of figures is the thing here; as shocking as the total numbers below are, the persuasive argument against the cuts is the individual stories of the difference this vital benefit makes to people’s lives and what will happen if it is cut. It’s easy for politicians to bat percentages and pound signs back and forth (and fudge the facts and stats, as the Spartacus report suggested earlier this year); it is harder to ignore the personal stories of how reform will make life even more difficult for those who are already vulnerable.