Tag Archives: local government

The role of siblings in the care of disabled adults

Anila Jolly and her older brother Sunil pictured recently
Anila Jolly and her older brother Sunil pictured recently

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.

Cutting employment support for learning disabled people is a false economy

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.

As I explain in the Guardian, while the general unemployment rate is falling, the number of out of work adults with severe learning disabilities or mental health issues who don’t have a job is on the rise. Last year, only 6.8% of learning disabled people using social care were in work compared with 7% in 2012-13. The corresponding rate for people using acute mental health services was 7.1% in 2014, compared with 7.7% the previous year.

Learning disability is not on most politicians’ radars, despite people who have learning disabilities, or who have someone with a learning disability in their immediate family, making up 10% of the electorate. A recent poll of 100 MPs by social care provider Dimensions suggests 60% do not believe that learning disabled people can be supported into employment.

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.”

You can read the full piece here.

City designers bringing urban spaces back to life

Swansea Bay tidal lagoon, using tidal power to generate renewable electricity
Swansea Bay tidal lagoon, using tidal power to generate renewable electricity
Croydon’s historic Wandle Park, restored
Croydon’s historic Wandle Park, restored
London’s Burgess Park, where the transformation included a 3,000 square metre play area
London’s Burgess Park, where the transformation included a 3,000 square metre play area
City Park, Birmingham, from semi-derelict area into a busy urban space
City Park, Birmingham, from semi-derelict area into a busy urban space

Swansea and Croydon – not places usually synonymous with cutting edge design and urban rejuvenation, but both have just been named as among the most forward-thinking places for landscape design.

Among the big projects worth picturing here is the first tidal lagoon – the world’s largest power-generating lagoon – in Swansea Bay and the regenerated Wandle Park in Croydon, south London.

Both are among the winners in the annual Landscape Institute awards, announced yesterday. The awards are granted to outstanding examples of work by the landscape architects. Full details are here.

Tech two: UK charity recycles computers to Africa

African students benefit from the UK's unwanted, recycled computers (pic: IT Schools Africa)
African students benefit from the UK’s unwanted, recycled computers (pic: IT Schools Africa)
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.

Given the recent news of dodgy tech hardware – and frankly even dodgier tech opinions – it’s a good time to be reminded about IT’s positive impact.

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.

Schools in Africa benefit from the UK's revamped computers (pic: IT Schools Africa)
Schools in Africa benefit from the UK’s revamped computers (pic: IT Schools Africa)

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.

Work experience students working to refurbish computers for Africa  (pic: IT Schools Africa)
Work experience students working to refurbish computers for Africa (pic: IT Schools Africa)

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.

Find out more here.

No-one should ever have to feel like they are not worth helping

Richard Turner and his volunteer befriender, Delia Jones
Richard Turner and his volunteer befriender, Delia Jones

“No-one should ever have to feel like they are not worth helping…”

I saw these striking words on a postcard displayed at a recent event to celebrate volunteering. With the massive cuts in public spending and the unprecedented reform of welfare, it’s not hard to see why vulnerable people might think they don’t deserve any support.

The words, written by someone with experience of volunteering, referred to the vital work of London-based charity the Octavia Foundation. In full, the handwritten postcard read: “No-one should ever have to feel like they are not worth helping and Octavia does such a good job of making sure that doesn’t happen.”

The event was Octavia’s annual volunteer awards, honouring some of the 250 local people who have given their time to others through the charity over the last year. Actor Tamsin Greig presented awards to those who support work with local people affected by ill health, social isolation, unemployment or poverty.

The foundation operates in the west London boroughs of Westminster, Kensington and Chelsea, Hammersmith and Fulham, supporting older people, working with young people, focusing on training and employment and debt advice. It runs regular groups and activities as well as some inspiring one-off projects which I’ve written about in the past.

The foundation works in one of the most affluent parts of the capital, but there is much for the charity to do in the pockets of deprivation that also exist.

I helped judge the charity’s awards, reading some incredible testimonies from people who benefit from the help of volunteers.

Delia Jones, who volunteers as a befriender for example, was highly commended. Delia was nominated by Richard, who she visits and who was involved in a serious car accident almost 40 years ago – both are pictured above.

Richard’s mother Joyce Turner, 95, who also nominated Delia, explained: “What Delia does for Richard is vital. He will tell Delia what kind of book he wants, as we have a lot of different kinds and we arrange them alphabetically so she can find them. Delia seems exactly right, and we love her visits because it gives Richard such pleasure to see her. The importance of her visit every week is that he only goes out three times a week, and if its raining or bad weather, she is the only thing that he looks forward to. She never lets us down and we can trust her.”

With welfare cuts and a squeeze on public sector funding, many support services are under threat so the work of volunteers is vital in helping society’s most vulnerable people. Some of the most innovative ideas – and inspiring, unsung heroes – are found in small, community-based projects that often don’t get the attention they deserve. The recent Octavia awards are an opportunity to put that right and focus on the important work carried out in local areas.

A full list of winners and background to the awards is on the Octavia Foundation website.

Investigation into bullying at special school sparks questions for Winterbourne improvement scheme

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.

The death of Connor Sparrowhawk recently reignited debate about the use of such units that cost around £3,500 per person per week and leave people at serious risk of neglect and abuse.

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.

Papers, policies, progress and people

While researching a recent piece about the preventable death of teenager Connor Sparrowhawk in a specialist NHS unit, I re-read a lot of old – very good and still very relevant – policy and reports.

As the piece yesterday stated, an independent report found 18-year-old Connor’s death at a Southern Health NHS Foundation Trust assessment and treatment unit was avoidable – reigniting criticism of care for people with learning disabilities.

But for more than 20 years – from 1993’s influential Mansell Report to its 2007 revised version, to the 2001 report Valuing People and the 2006 Our Health, Our Care, Our Say white paper, it’s been clear what “good looks like”.

I started this blog specifically to look at good projects, people and places, mostly related to social care. I spend some of my time finding out and writing about the good stuff that goes on – it was what I was doing before I turned to “the Connor Report“. It was a cataclysmic shift from one extreme of care to another (that brilliant, easy read version of the report is from Change Peopleby the way).

I know some brilliant folk who support people with learning disabilities and complex needs. I’ve seen first hand some of the excellent and groundbreaking support that exists for autism, learning disability and for people with challenging needs. My sister’s benefitted from the right support (albeit after a bit of a fight).

Yet despite the good practice, great intentions, campaigns, official frameworks and guidelines and reams of evidence, the pace of change for people with complex needs is slow. And poor practice remains.

When you find out about the experience of Connor’s family – his mother Sara Ryan and stepfather Richard Huggins – it is impossible not to compare it with what’s meant to happen.

Below, are just three areas I very quickly plucked from some of the papers I’ve been revisiting:
– commissioning of care services
– the concept of personalisation (tailoring care to the individual rather than a “one size fits all” approach)
– the wider issue of the status of people with learning disabilities in society (something that angers me enormously).

The gap between the rhetoric and the reality – most notably when it comes to people with “challenging behaviour” and complex needs – is clear. Cast your eyes over these “then” and “now” juxtaposed extracts and comments.

Then – commissioning of care services:
Mansell Report 2007 :
“Combining the different elements of services to ensure that people with learning disabilities whose behaviour presents a challenge are served well is the job of commissioning. Models of good practice have been demonstrated and service providing organisations committed to good practice exist. However, in the period since 1993 development has not kept pace with need. Placement breakdown continues to be a widespread problem in community services; people are excluded from services; assessment and treatment facilities cannot move people back to their own home; some of the placements eventually found are low value and high cost. What is it that commissioners need to do to tackle these problems? …Failure to develop local services threatens the policy of community care. Doing nothing locally is not an option. Out-of-area placements will `silt up’ and reinstitutionalisation (through emergency admissions to psychiatric hospitals or via the prisons) will occur. Special institutions and residential homes for people whose behaviour presents a challenge will be expensive but of poor quality and will attract public criticism. Overall, the efficiency of services will decrease because of the widespread lack of competence in working with people who have challenging behaviour. Commissioners will have less control over and choice of services. Individuals, carers and staff will be hurt and some individuals whose behaviour presents a challenge will be at increased risk of abuse. Staff will be at increased risk from the consequences of developing their own strategies and responses and managers will be held accountable where well-intentioned staff operate illegal, dangerous or inappropriate procedures.”

Now – commissioning of care services 2014:
Sara Ryan: “How can the commissioners not do anything [with reference to why assessment and treatment units are still commissioned]…If you commission a young person to staying in a £3,500 a week unit, then it is your duty to go and make sure that is worth it.”
Richard Huggins: “Commissioners commission public services on our behalf..Clinical commissioning group decide between competing NHS provision, so you can’t have model like that [where you buy a service and then when it goes wrong] say ‘well it’s not our fault’.”

Then – being ‘person-centred’
Valuing People, A New Strategy for Learning Disability for the 21st Century (2001) :
“A person-centred approach will be essential to deliver real change in the lives of people with learning disabilities. Person-centred planning provides a single, multi-agency mechanism for achieving this. The Government will issue new guidance on person-centred planning, and provide resources for implementation through the Learning Disability Development Fund.”

Now – being ‘person-centred’ 2014
Sara Ryan: “There is no personalisation in these units…”
Richard Huggins: “We thought they’d say ‘this is what Connor needs this is what we should do’. How that would be achieved, we had no preconception. But we thought he’d come back with a better plan, we wanted an outcome that would suit Connor.”

Then – the status of people with learning disabilities in society
Valuing People (2001) :
“People with learning disabilities are amongst the most vulnerable and socially excluded in our society. Very few have jobs, live in their own homes or have choice over who cares for them. This needs to change: people with learning disabilities must no longer be marginalised or excluded. Valuing People sets out how the Government will provide new opportunities for children and adults with learning disabilities and their families to live full and independent lives as part of their local communities.”

Now – the status of people with learning disabilities in society 2014
Sara Ryan: “There is a prevailing attitude about learning disability that somehow, if you’re born ‘faulty’ you cannot expect to lead a full life. What is really upsetting is fact that Connor and most young people I know are learning disabled have so much to contribute, and so much people can learn from them, but people can’t see any value in them and don’t see them as human beings, I find that really distressing.”
Richard Huggins: “There are three issues here. What happened to Connor – the care he received and how he was treated, which is still not accounted for – the way Southern Health Trust behaved as an organisation, and then there is a more general issues about the status of learning disabled people in British society.”

I could add more examples, but I think the contrast is clear.

There is a strong and growing momentum for action following Connor’s death. There is also anger but, as someone wisely told me yesterday, the anger can be channelled into action. There is also, as one chief executive of a care organisation tweeted about Connor earlier today “an onus on all of us who care to stand together alongside families seeking justice”.

* There is a “Connor Manifesto” which outlines what needs to happen next and you can find out more about the campaign on the 107 Days site and Sara Ryan’s blog.

Why did Connor Sparrowhawk die in a specialist NHS unit?

Connor Sparrowhawk (photo: Sara Ryan)
Connor Sparrowhawk (photo: Sara Ryan)
The death of 18-year-old Connor Sparrowhawk at Slade House assessment and treatment unit was avoidable, according to a recently published report. What happened to Connor, who was admitted to the specialist care in Oxfordshire a year ago today, has reignited debate about the use of these units – Winterbourne View was a privately run unit where the abuse of patients with learning disabilities was exposed by BBC’s Panorama in 2011.

The full piece I wrote for today’s Guardian is here – please read it alongside the words of Connor’s mother, Sara Ryan, who describes the fight for justice for her son.

From today for 107 days (the length of time Connor was in Slade House), there is a campaign to raise awareness of what happened to Connor. Building on the palpable sense of anger and injustice, it is hoping to push for action.

You can follow the campaign on Twitter @JusticeforLB #JusticeforLB. Connor’s mother’s blog is here.

I’m posting some additional contributions from a few interviewees here as there wasn’t space in the published piece.

Sandie Keene, president of the Association of the Directors of Adult Social Services, stressed the fact that it’s not just social care commissioners who are responsible for the continued use of units like Slade House:
“Commissioning these days is a complex environment [it’s within] NHS England, clinical commissioning groups, social care commissioning.” Keene adds that the solution is partly “to find better ways of cascading the best practice”.

Mark Neary won a legal fight to get his autistic son, Steven, out of the kind of care Connor was in. He explained what these units are like for individuals and families: “After Steven’s experience in an assessment and treatment unit where he was unlawfully held for the whole of 2010, I question what the purpose of these places is. In our case, the judge remarked about the lack of assessment when Steven was first taken there and there didn’t appear to be any treatment taking place. The unit appeared to me to be a holding container. And a very expensive holding container at that. The other aspect of the unit that shocked me was how much families were excluded. On a major medical document, I wasn’t even mentioned as Steven’s next of kin – his keyworker at the unit was. To have my whole 20 years experience of Steven negated was quite terrifying. And worst of all, it must be awful for the person detained there to be cut off from the people who have cared for them all their life. Steven has autism. Does that need treatment? And even if it does, is it good for a person for whom routine is everything to be kept in one of these places?”
* You can read Mark’s blog and his stories of his son’s time in an assessment and treatment unit

Jenny Morris, an independent consultant who advised the previous government on disability, puts the lack of progress on moving people out of units and into the community down to two things: “There are negative attitudes in society in general toward people with learning disabilities plus ignorance or lack of understanding about how denying people the ability to communicate their needs, and failure to meet their needs, leads to “challenging behaviour. When things go wrong the response is to write new or updated standards and codes of practice etc instead of paying attention to how to recruit, retain and value people who can – because of their values – provide good care and empower people. If we paid more attention to the characteristics of people who provide good care, plus how to support them with training and good working conditions etc, and less to problematising the needs of people with learning disabilities we might not see the kind of institutional disablism that persists in so many services.”

A senior contact, who didn’t wish to be named but who runs a large care organisation, talked about the closure of long-stay hospitals and how what’s developed in their place is almost as bad: “We closed closed them and some pretty similar things have replaced them. The policy context for working with people with challenging behaviour has been clear for over 20 years..the best way to develop servives for people with challenging behaviour is individualised services around the person and it needs to be small scale local and in the community. It has been out there [ie known about and practised by the best care providers] for years, but seldom happens.”

I interviewed Katrina Percy, the chief executive of Southern Health, which ran the now-closed unit that Connor was in. Southern was criticised in an independent report into Connor’s death and is currently being investigated by health regulator Monitor.

Asking why units like Slade House exist, I mentioned the buck passing that families feels goes on between ‘stakeholders’ – with commissioners of services and clinicians complaining about the lack of community-based alternatives, and service providers for people with learning disabilities suggesting commissioners don’t know about, or cannot afford, existing alternatives. Percy replied: “I feel it’s got to be a joint piece of work, so often the experts [who sit on commissioning boards] come from our organisation, but the commissioners need to make the decision that they wish to commission this new [community-based] model of care”.

I asked if concerned the trust is worried about losing its healthcare licence given the critical reports (the report into Connor’s death and inspections by the care sector regulator, as the piece today explains). Percy responded that she did not know about a potential breach of licence, but said the trust had been in discussion with Monitor and “the organisation overall has an awful lot of strengths”. She added: “One of the hardest thing in my job is about enabling focus where things go wrong, but not allowing that to pervade a very big organisation where lots of things go very right [where] in fact we’re seen as leading edge and my job as chief exec is to absolutely make sure that we get that that balance and prioritisation and focus right.”

On the calls for her resignation, Percy replied that she would like to “meet the family and talk to them directly so they actually see what I’m like as an individual and as a chief executive.” She added: “There are many things we are very proud of in this organisation and we provides services to millions of people and therefore I think my best place is to help us continue to improve services for every single person who needs to use them.” Asked to clarify, Percy replied: “I don’t see that it’s approporiate that I would resign, no.”

Responding to what she would say if she met Connor’s family, specifically his mother Sara Ryan, Percy said: “I would apologise unreservedly that her son and her family were let down by our services…I would ask her when she feels ready, if that is what she would like to do, to continue to campaign and work with us to design a set of services where this will never happen again.”

* Seven members of staff who worked at the now-closed Slade House are subject to a “human resources investigation”, with the first disciplinary hearing due to take place this month. In an email after the Guardian piece went to press, Southern Health confirmed “three members of staff have been suspended”.

Ordinary residence, extraordinary mess

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.

The original piece is on the Guardian website:

"Caught in a trap: disabled people can't move out of care",  The Guardian October 2010
“Caught in a trap: disabled people can’t move out of care”, The Guardian October 2010

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.

Comment is free

Hello all, briefly highlighting my words posted in the comments thread under my Guardian interview last week with the Muslim mayor of Tower Hamlets council, Lutfur Rahman.

I’m re-posting my comment here for clarity given there were around 140 responses last time I looked.

Thanks if you’ve read and commented on this piece. As many of you know, it’s written for the SocietyGuardian interview slot, which has a particular format and tone and if it was an investigation or piece of long-form journalism, it would have been tagged as such. 
The aim, mentioned early on, is to push aside the mutual mudslinging, hype and hate, and look specifically at whether or not aspects of the latest budget stack up long term – essentially, can the council balance its books? The piece doesn’t set out to repeat or re–explore the well–documented allegations and criticisms which are available to read in other places:
‘Is it time that Tower Hamlets, a political morass and England’s third most deprived authority where half the 250,000 residents are from black and minority ethnic (BME) backgrounds, mostly Bangladeshi, be looked at afresh?’
While it’s not possible to include or analyse every element of spending or cuts in 1200 words, the piece ultimately disputes Rahman’s claim of fireproofing the frontline and his divisive nature, outlined at the start, is reflected by many of the responses here
.”

Here’s a comment from my editor in the same thread:
As the editor of the Society section I commissioned Saba to interview Lutfur Rahman, about the plans he had in place to try to protect public services in Tower Hamlets from huge spending cuts. He seemed to be taking a very different approach to councils such as Newcastle, whose leader we profiled a couple of weeks earlier. The interview was intended to explore Rahman’s approach by giving him a chance to put his case and to assess whether or not his plans were viable.
I appreciated that he is a divisive figure for various reasons outlined in the interview – such as alleged links to Islamic fundamentalist groups which he has has repeatedly and categorically denied – but the purpose of the interview was not to focus on this aspect of his leadership which has been the subject of TV documentaries and countless column inches, but to focus on his policy initiatives. I feel that it achieved this, as some of you have acknowledged in your comments
.”

If you’re interested in reading more, try this, on the Telegraph website, which leads on from the comments thread and outlines issues not included in the Guardian piece. These issues weren’t included for the reasons stated in the piece itself and in the two responses above.

More background, history, facts, detail as well as conjecture from all parties involved – journalists, commentators, residents, Rahman’s supporters, his opponents and politicians of all hues – is easily found via a quick Google search.

Finally, there are a couple of links here and here (specifically the section marked footnote on the second link) by other writers who have felt compelled to clarify their reporting of and interviews with Rahman.

Happy reading!