A few images here from an innovative digital arts festival due to take place this weekend (10-12 July). The interactive event, which I wrote about today for the Guardian’s online social care pages, will feature giant portraits of learning disabled people projected onto buildings, a game played with an accessible mapping app and an inclusive, high-tech design workshop to re-imagine a town centre.
People with learning disabilities will help stage the innovative art installations and music and dance performances that they have created alongside digital and community arts practitioners. The inaugural SprungDigi Festival in Horsham, West Sussex, runs from Friday until Sunday.
The name of the free event reflects the concept that digital technology and online activity can be a springboard to social inclusion. The aim is to ensure that people with learning disabilities are more visible and feel more connected to their local areas. Read the rest of the piece here and check this festival page for more information about the weekend.
I’m so grateful to Anila Jolly (pictured above, with her brother Sunil) for speaking so frankly about her relationship with her sibling.
As she says, siblings of disabled adults are “largely invisible” to care providers, but their “insight and perspective can be valuable”.
There’s more on these issues in a piece on the Guardian’s social care network today; 1.7 million adults in the UK have grown up with a disabled brother or sister but campaigners say their support needs and caring role are overlooked.
My piece today focuses on the work of Sibs, the UK’s only charity for siblings of children and adults with a lifelong learning disability.
Sibs’ call for greater recognition for this comparatively invisible group is timely given the next tranche of welfare cuts, says its chief executive Monica McCaffrey – “people who don’t have critical or substantial need will have little or no support … siblings will have to ensure people are safe and we want them to have a voice within adult social care.”
In addition, the role of siblings should be seen in the context of Carers Week next week and the are growing calls for families to be fully involved in the care of disabled relatives (take the campaigning LB bill , for example).
You can read more here about siblings’ distinct role and how care providers and commissioners often underestimate their contribution.
Richard Ward has barely taken a day off sick since he started working 15 years ago. His friendly nature and keen eye for detail suit his role at a Boots store in Coventry, date-checking food, stacking shelves and helping customers find what they want. Ward, 33, says: “I like earning my own money, getting on well with the staff, seeing different people every day and it gets me out of the house.” Ward earns £600 a month, just over the national minimum wage.
Ward lives with his parents in Walsgrave, Coventry, and was referred to a local jobs support service by his special school; mainstream job agencies and government-run employment schemes would consider him unemployable. His mother Jane says he would be on benefits without the specialist job advice, coaching and long-term support from Coventry city council’s The Employment Support Service (TESS) for people with learning disabilities or mental health issues.
However, Ward’s job is under threat, along with those of another 100 people TESS currently supports to maintain employment and the 30 it helps annually into new jobs. The Labour-run council has earmarked the nationally acclaimed 22-year-old service for closure, a victim of public sector cuts. Its future after this December is unclear.
Coventry is not unique; supported employment is a Cinderella service, not a local government statutory requirement. A 2011 poll by the British Association for Supported Employment (BASE) of 50 of its members found half face council funding cuts of at least 15% and a quarter fear 50% to 100% cuts.
The situation in Coventry has sparked worries for families of younger disabled people elsewhere. They warn that supported employment cuts are at odds with special educational needs and disability reforms aimed at raising the aspirations of future generations.
In a joint comment Sherann Hillman co-chair of the National Network of Parent Carer Forums (NNPCF) and Sue North from Contact a Family said: “Parent carers of young people with disabilities and special educational needs say fear for their child’s future is one of their top concerns. This is because young people with special educational needs and disability are less likely to find employment and live independently – and face other additional barriers as they grow up. Any threats to provisions such as supported employment schemes, will inevitably compound these fears and worries.
People TESS supports spoke in its defence at a public meeting last week organised by local unions. Among them was Hayley Archer, who has a learning disability. Her mother, Suzanne, stresses the wider impact of supported employment must be recognised: “People like Hayley are changing society’s attitudes by having a role in the workplace and by working alongside people without learning disabilities.”
Archer herself, an administrative apprentice at the council, has a simple request for her future: “I really want to keep working.”
Barbara Davis’s abusive boyfriend burned her fingers on the stove when he discovered her packed suitcase under the bed and realised she was trying to leave. He had controlled Davis, 36, who has a mild learning disability, for years. He isolated her from family and friends, verbally abusing her parents until they stopped visiting. He locked her in the privately rented London flat they shared, goading her to kill herself. She recalls: “He told me to strangle myself with a wire … he wanted me to die.”
Davis (who eventually escaped) told her story to researchers from the Tizard Centre as part of a project to explores the experiences women with learning disabilities who suffer domestic violence. The work, which also looks at the attitudes and practices of professionals who support such women, is featured in my Guardian piece.
There are some shocking – although perhaps not surprising (given the low profile of learning disability as an issue) – facts included in the piece. Among them, that the UK has just one specialist domestic violence refuge for women with learning disabilities. What’s more, most police officers (often the first point of contact in a domestic abuse incident) do not believe that a learning disability makes women more vulnerable to domestic violence.
The new network will collaborate with the council “to ensure disabled people’s involvement in the design and delivery of new policies and programmes”. In this guest post, Kevin Caulfield, who chairs HAFCAC, and fellow campaigner Debbie Domb, explain more about the new organisation and you can read more here.
Why we launched the Hammersmith and Fulham Disabled People’s Organisations Network:
DD: Our main aims are to promote the rights of disabled people, to support local disabled people to speak up and get their voices heard and to promote the social model of disability.
KC: This is hopefully dawn of new era in Hammersmith and Fulham. We want to work in equal partnership where we can with the new council. Bringing together the borough’s disabled people’s organisations (DPOs) unites our experiences, expertise providing peer organisational support.
How the new group will be different to existing organisations:
KC: We believe it’s the first local network of DPOs certainly in London. We need more than ever to work together to defend and promote inclusion human rights of disabled people.
We believe there’s something of a “tipping point” in disability rights at the moment:
KC: We have had enough of the scapegoating, punitive policy changes pushing us back to the margins and some of us over the edge to desperation, isolation, destitution and in some cases suicide or death by negligence.
DD: In the borough of Hammersmith and Fulham, these factors were magnified as we were ‘David Cameron’s favourite borough.’ (Thankfully no longer ) Policies were implemented here prior to being rolled out nationwide. Disabled people were treated with total contempt by [Tory former council leader] Greenhalgh et al; we were laughed at in council meetings and not allowed to speak. cuts to our services were disguised as ‘efficiencies’ and we were treated as cash generators.
HAFCAC started as a grassroots campaigning group that was entirely self funded. Since then many grassroots campaign groups of disabled people have formed. Ian Duncan Smith particularly targeted disabled people as we were perceived as unable to fight back, groups like DPAC (Disabled People Against Cuts) which spearheaded actions by hundreds of disabled activists show he was mistaken.
There is a raft of issues locally that disabled people are concerned about:
KC: Nearly every aspect of our lives [concern us] but locally
· Hospital closures
· Accessible and truly affordable housing
· The breaking up of schools making inclusion of disabled students less likely
· Charging for services
· Eligibility for state support
· Cuts to standard of living, destruction of the welfare state.
· Closure independent living fund
· Taking our direct payment support service in house with no consultation
· Quality of home ‘care contracts.
We have a vision for the future work of our new organisation:
KC: I hope we have created a new model for working effectively with a council that is different from involving us just when the decision is about to be made that we are seen as a flagship borough all over for promoting disabled people equality and starting to make it really happen. That we can expose austerity for what it is a calculated pernicious opportunity used to demonise, discriminate, worsen life chances by punishing the poor and marginalised.
DD: Finally we have a council that wants to engage and work with us, the relationship is mutually beneficial. It will be fantastic if Hammersmith and Fulham can be seen as a flagship borough for disabled people’s equality, as rather than as previously the borough who ‘put disabled residents last.’
The handwritten song above (typed transcript below) is by Tianze Ni, 17. For the last six months Tianze has lived in a hospital unit in Middlesborough, 200 miles away from his family in Fife, Scotland.
Tianze is desperate to be home. His parents are desperate to have him back. The local council that has placed him in the unit says there is nowhere appropriate for his needs nearby.
I mentioned Tianze’s case in a piece for the Guardian recently on the 2,600 people with learning disabilities stuck in specialist institutions miles from home (you can read more in this post too).
A report commissioned by NHS England attempts to find solutions to the problem. In addition there is a growing grassroots campaign for new legislation – the disabled people (community inclusion) bill 2015, also known as the LB bill) to prevent people from being sent to these places in the first place.
Tianze’s mother, Nina, describes the “inhuman treatment” of keeping Tianze away from home. “We are suffering day and night,” she says.
She is not alone. Leo Andrade-Martinez, for example, whose son Stephen, is also miles from home in a similar unit: “No one should suffer like this”.
The stark words of families and of people with learning disabilities are more powerful than anything I can write here.
Here are Tianze’s words; they need to be read and shared widely:
Miss home, back home, by Tianze Ni
I miss home,
I dream home,
I miss mum,
I miss Dad,
My home is in Scotland…..
I miss home
I dream home.
I miss home food
I miss home family together,
I count days to back home …..
* See also Tianze’s petition on Change.org, and Stephen’s.
* See here for information on the “LB Bill“, a draft private members bill that aims to boost the rights of people with learning disabilities so health or social care authorities will find it harder to transfer people to assessment and treatment units miles from home.
Stories of public sector waste and inefficiency are commonplace, not least amid the current climate of cuts and the notion of “doing more with less”. Which is why I was interested to hear of a project in Gloucestershire that collects old computers from police, NHS and other public bodies and charities, gives them a new lease of life and distributes them to African schools.
IT Schools Africa, which celebrated its 10th anniversary last week, collects old, used machines in the UK, refurbishes them – dismantling them and fixing software problems, for example – before sending them to schools in Africa.
The charity has sent more than 44,000 recycled computers to eight African countries since its launch, allowing an estimated 3m children access to technology. It also delivers technical support and IT teacher training in the schools.
Manufacturing a PC, as the charity points out, consumes 240kg of fossil fuels, 22 kg of chemicals and 1.5 tonnes of water. So re-using the machines not only benefits young people in Africa, but helps the environment (once the computers have reached the end of the lives in Africa, the charity also recycles the materials and parts).
In the UK, the charity offers work experience to local students and to young people with special educational needs as well as to the long-term unemployed. It works with three prisons – Cardiff, Whitemoor and Winchester – where prisoners work to refurbish computers.
Over the last three year Gloucestershire Constabulary has donated 275 computers, the local NHS Trust 194 computers and charity donors include the Wildfowl and Wetlands Trust (147 machines), the Order of St Johns Care Trust (208 computers) and the Royal Hospital Chelsea, which gave 21 computers.
Private sector firms and individuals are also among those donating machines, and the charity is using its 10 year landmark to renew its fundraising dive, hoping to expand its network of donors and its work with prisons.
Fresh questions are being asked about the government’s beleaguered post-Winterbourne drive to improve care for learning disabled people. An investigation is underway into “bullying accusations” at a special school run by a charity whose chief executive is trying to reinvigorate the flagging £2.86m government improvement scheme.
Bill Mumford, chief executive of MacIntyre which runs Womaston School and Children’s Home in Wales, offered to stand down as director of the Winterbourne improvement programme after allegations of mistreatment at Womaston. The government programme launched after the abuse of learning disabled patients at the Winterbourne View privately run unit in south Gloucestershire, abuse that was exposed by BBC’s Panorama in 2011. It aims to move individuals out of institutional, large-scale, long-stay units and into community-based accommodation.
Concerns about the behaviour of some staff towards children at MacIntyre’s specialist residential service were reported by a member of staff to the school principal in March and police and social services are investigating the claims. The school, home to students aged aged 10-19 with autism, complex behavioural needs and learning disabilities, will close in July with the young people moved to alternative placements. Staff have been suspended, other staff drafted in and, says MacIntyre in a statement, “the alleged behaviours are not occurring in the service now”.
The investigation into Womaston is expected to last several months and there are no more details about what the allegations involve. A BBC online story refers to “physical abuse”, a statement from MacIntyre describes “concerns” about the “behaviour of some other staff members” while a personal statement from Mumford mentions “a small group of my staff…suspended following accusations of bullying”.
The incident has sparked fresh criticism of the Winterbourne programme run jointly by the Local Government Association and NHS England. It aimed to move everyone out of such assessment and treatment units by 1 June 2014 but after little progress (3,250 people with learning disabilities and autism are still in private or NHS-run settings like Winterbourne View), its previous heads left and Mumford took over in January, on secondment from MacIntyre. New NHS figures show only 256 out of 2,615 in-patitents with learning disabilities or autism have dates for transfer into community settings and more are being admitted to NHS settings than moved out.
Mumford has issued a personal statement “re the investigation at MacIntyre and my continuing role in support of the Winterbourne prog” (that’s a statement taken from Twitter). In it, he accepts concerns that while he is charged with a national role to improve the care and support of learning disabled people, employees of the organisation he presides over were carrying out exactly kind of behaviour he’s trying to stamp out. He also addresses the fact the drive has been less than successful.
He says in his statement (the square brackets are mine): “It is a very real concern to me and the [Winterbourne improvement programme] partners that the trauma experienced by individuals and families at Winterbourne View and elsewhere should not be exacerbated by the thought that the person responsible for the programme [is] being tainted with serious problems in his own organisation. Indeed it is the unacceptable stories of individuals and families that motivate and challenge us all to step up and do better. Therefore my second decision was to contact the Joint Improvement Partners, including personal phone calls to the representatives of people with learning disabilities and families, to inform them of the situation and offered to voluntarily step down. This couldn’t come at a worse time for the programme partners as it is well know[n] that complexity of achieving the original concordat commitments has been a struggle.”
The MacIntyre chief executive adds that the charity took immediate action: “There has been no cover up, no prior issues of this nature have been raised before and the families and placing local authorities and alerting member of staff are all completely satisfied with MacIntyre’s actions to date. Therefore MacIntyre is dealing with a very serious situation exactly as they should – it is an example of how things should happen and maybe this is an important lesson for the programme to share.”
While the investigation by Powys social services and police continues, Mumford says he is “not only restricted about what I can say but actually what I know. However as soon as it is completed I will share what we have learnt regardless of how painful that might be.”
Discussion (so far mainly on social media) involves support for Mumford and the Winterbourne programme’s aims as well as criticism about why a statement was only made public this morning and why there was not more immediate public transparency after the claims were lodged with the relevant authorities.
*This post was updated this evening in an attempt to clarify “bullying accusations” and add figures and links relating to the number of in-patients with learning disabilities.
“Disabled people in residential care who want to live more independently are being prevented from doing so by funding wrangles between local authorities” – that’s taken from a piece I wrote three years ago, but since then little has changed.
Here’s the mess: an individual’s “ordinary residence” is usually in his or her original local authority area, so if a council places someone in residential care outside the area, it remains financially responsible.
But when someone decides to move from that residential care in the new area into supported accommodation within the same (ie “new”) area, their original authority argues that it is no longer responsible for funding. However, the new authority – where the person actually lives – argues against funding someone not originally from the area. The result – limbo.
Confusing? Not really, what it boils down to is that councils are passing the buck over people’s care, effectively dictating where people should live -and all the while, individuals themselves appear to have no say. And quibbling over the care bill will only get worse as local authority cuts continue to bite.
I’ve been involved in a piece of work published today by social care organisation Voluntary Organisations Disability Group. The VODG has previously demanded action to resolve such ordinary residence dilemmas and, this time, it argues that the Care Bill offers ample opportunity to finally tackle the challenge. The new briefing, Ordinary residence, extraordinary mess, is available from the VODG website, with this post outlining how the situation has become “business as usual” in many areas.
One way forward, which the bill could accommodate, is strengthening the duty on local authorities to cooperate with providers and with each other to prevent delays in funding when people want to move from one care setting to another. The Epilepsy Society, for example, which contributed to today’s publication, estimates that in the last three years it has covered gaps in fees totalling £350,000 and “staff time involved in chasing fees over the same period has amounted to approximate 340 days across all departments including senior and service managers, finance and administrative staff”.
Here’s just one story from today’s publication, from a social care provider in central England: “Joe moved out of residential care into supported living accommodation nearby, run by the same charity provider. Council A, where Joe is now ordinarily resident, is refusing to take over funding from Council B which had previously paid his out of county residential care fees. Some 14 months later, the social care provider (a medium sized charity) is owed nearly £50,000 from Council A for this one client. Members of the charity’s finance team chase Council A each week and include copies of previous correspondence and agreements. Council A continues to delay payments, giving the provider different reasons for not paying and passes the query around different council departments. The charity has continued to provide care and covered this gap in fees.”
While the powers-that-be seem unwilling to either acknowledge the scale of the problem or indeed have the confidence to untangle the mess, vulnerable people across the country remain in limbo, unable to move to the place of their choice because of bureaucratic wrangles.
As Anna McNaughton’s mother told me three years ago: “All Anna wants is to live in a suitable home – it’s a basic human need, not a luxury.” It’s a desperate situation that three years on, her words still have the same resonance.