There are two Winterbourne View scandals. The first was the neglect and abuse of people with autism and learning disabilities in a Bristol ‘assessment and treatment unit’ that was exposed in 2011 by BBC Panorama.
The second is the fact, confirmed by last week’s report by Stephen Bubb, that after five years of inquiries, reports and high-level commitments to close such institutions, they still contain some 3,500 vulnerable individuals.
In his 2014 report Bubb called for a charter of rights for people with learning disabilities.
Now, recognising that this call failed to expedite the closure of the institutions and the transfer of residents into the community, Bubb has proposed appointing a commissioner to promote and protect the rights of people with learning disabilities.
But rights are only meaningful is they impose a responsibility on the state and if the state can meet these demands.
As Baroness Sheila Hollins, Britain’s leading learning disabilities psychiatrist, observed at the launch of the latest Winterbourne View review: “The elephant in the room is the funding crisis.”
Zero-hours contracts
Neither a charter nor a commissioner can compensate for the drastic decline in funding for services in the community.
Bubb’s latest report makes many useful proposals but takes little account of the wider climate of austerity bearing down on individuals with learning disabilities and their families.
Cuts in local government spending on adult social care are leading to closures of residential facilities and day centres for people with learning disabilities and squeezing personal budgets and care packages.
The Bubb report recognises the problem of low pay, rapid turnover and inadequate training in the care sector but has nothing to say about improving wages or ending zero-hours contracts.
The report indicates that 10,000 extra staff will be required to cope with the anticipated increase in demand for services for people with learning disabilities, but is silent about how these workers are to be recruited or paid.
Meanwhile, the Royal College of Nursing has reported that there has been a 30% drop in the number of learning disabilities nurses between 2010 and 2014.
Cuts also affect benefits, the local voluntary sector, educational provision and recreational facilities.
Beveridge fallacy
A central theme in Bubb’s report is ‘the prevention revolution’: “Prevention is about managing people’s needs and circumstances in a safe and cost-effective manner, which ultimately means the extent of their need reduces and they are able to become more independent.”
The report emphasises the need for ‘upfront spending’ on training, community teams and housing, which it believes will lead to long-term savings.
This is a restatement of the familiar Beveridge fallacy. The founder of the welfare state believed that early spending on preventative health care under the NHS would improve public health and allow a subsequent reduction in government spending.
As NHS spending has subsequently increased, apparently inexorably, this has turned out to be wishful thinking of a variety that has endured despite its repeated falsification.
Bubb believes big savings can be made through “the reduction of ‘hours’ needed as individuals increasingly need less intensive support”.
The assumption is that early intervention – providing ‘the right support’ – will allow people with learning disabilities to become more independent and thus require less support and cost less money.
Met need remains a need
But this fails to take account of the realities of life for people with autism, learning disabilities and other complex problems who have ‘critical’ or ‘substantial’ levels of need – the only people who are currently eligible for council services.
Most individuals receiving adult social care services are suffering from life-long developmental disorders and are likely to require continuing high levels of support to maintain their wellbeing. As the saying goes, a met need remains a need.
It is possible, that for some individuals, as the Bubb report hopes, support needs will decline over time. It is also possible, as the report never considers, that support needs will increase.
A third possibility – indeed the most familiar scenario – is that support needs will fluctuate, for a wide variety of reasons.
Though Bubb asserts that “the case is clear, if predominantly anecdotal”, the reality is that while supportive early interventions may relieve the distress of individuals and their families and may enhance independence, they are very unlikely to save money.
Two questions preoccupy families in relation to an adult family member with autism and severe learning disabilities: Where are they going to live? And what are they going to do all day?
In relation to the former question, the Bubb report contains a range of proposals, notably recommending exemption for people with learning disabilities from housing benefit cuts.
Community services decline
Yet, on the question of providing purposeful activities in the community, it has no specific proposals. This is unfortunate at a time when opportunities are being restricted by the closure of day centres and the wider decline in community services.
In Haringey, the council has invoked the radical critique of institutional practices to justify its closure of day centres and its abandonment of ‘buildings-based’ care in favour of ‘signposting’ people with learning disabilities to often non-existent community services.
In practice, the ‘buildings’ in which care will based in the future will be the homes of service users, however inappropriate these may be and whatever additional pressures this may impose on family members.
Far from ‘preventing’ problems, the curtailment of day opportunities for people with autism and learning disabilities may well lead to a higher incidence of challenging behaviour and mental health conditions, resulting in the breakdown of community placements and further admissions to Winterbourne View-type institutions.
‘Chemical restraint’
“What is an institution?” inquires Bubb rhetorically, arguing that this concept refers more to cultural practices than to particular buildings.
One such practice that his report mentions in passing in the context of traditional institutions – the use of ‘chemical restraint’ – has become all too prominent a feature of care in the community.
According a recent NHS England study some 30,000 to 35,000 adults with learning disabilities are currently being prescribed ‘atypical antipsychotic’ medications in the absence of any appropriate indication.
It is clear that these drugs are being widely used as ‘tranquillisers’ to contain the sort of ‘challenging behaviour’ that may result from unsatisfactory residential care services and the lack of stimulating day activities.
The Bubb report recommends more systematic training in ‘positive behaviour support’ programmes but access to such programmes is currently limited.
Problems entrenched
The death of Connor Sparrowhawk, a young man with autism who drowned in a bath during an epileptic fit while under NHS care in Oxford in July 2013, confirmed that the problems exposed at Winterbourne View remain entrenched in the care system.
An independent inquiry revealed a failure to investigate hundreds of deaths of people with learning disabilities in South West England.
Though the Bubb report is replete with ‘step changes’ and ‘road maps’, it will require more than jargon if community services are going to rise to the challenges currently facing adult social care.
- Mary Langan is the mother of a man with autism and severe learning difficulties and a founding member of Save Autism Services Haringey which campaigns against cuts to local adult social care services
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Mary Langan has outlined very clearly the undoubted truth that people with autism and complex needs will continue to require high quality, specialist care to maintain their well-being and avoid damaging episodes of severely challenging behaviour. This care cannot be provided cheaply. Staff must be well trained, well supported and adequately paid to provide these services and attempts to do this on the cheap will inevitably fail. The burden of such failures is borne by these very vulnerable adults and their family carers.
We must accept that sufficient government funding is essential, if we are to avoid repeated episodes of care failings and abuse within our care system.
Mary Langan makes important points – cuts to funding and subsequent so-called ‘restructuring’ are leaving people with learning difficulties, and similar needs, in appalling circumstances. Tragically the under funding and reduction of resources, outlined by Ms Langan, is widespread.
For instance, in my capacity as a Honorary Worker in an NHS facility, I received a call from a 70 year old woman in distress because her daughter – who has autism – was also distressed. This woman regualrly phones up with these unmet needs.
Yet the Centre where I was working could not help. Sadly, nowhere else in that area has resources to help her and her daughter either. The woman was signposted to her GP. I hope this produces some positive results. But so often services have disappeared and the signposting just leads to a futile trail of out-of-date websites and closed facilities. Such signposting is often fruitless and exhausting. Vulnerable people are usually least able to access what they need in this world of service closures.
When I see this evidence of deliberate neglect brought about by our political leaders, I think of Gandhi’s response when someone asked him what he thought of Western Civilization. He replied ‘I think it would be a good idea’.
C The cuts to services to vulnerable children and adults with autism and learning difficulties is beyond belief. The vulnerable and helpless within our society require our maximum support, understanding and commitment. Without the voice, petition and determination of politicians, parents, professionals and the public, councils are able to make decisions which destroy the lives of the vulnerable in our society. We all need ro support the arguments for change, finacial support, staff increases in these services. This government is blind/deaf and insincere in their actions and policies. This has to change. Let us all unite to fight for change!
A very good article. Although Bubb started out by claiming that he only had to get a small group of his vol.org chief execs together and they would get the Winterbourne View problem sorted out in no time, he’s found it’s a bit more complicated. What neither he nor anyone else at the top of the health and social care scene is likely to acknowledge is that these cruel, expensive and abusive establishments are their own creation – invented to solve the problem of inadequate community care, support and treatment. Castlebeck were charging £3,500 a week – you can do a lot for that sort of money if you’ve got the small homes and communities, the day centres, colleges and supported employment, the physical and mental health support that are currently being cut back, closed, and inspected out of existence by CQC who at one time thought Winterbourne View was fine and were hounding good small family homes for not having records that (according to them) would “ensure” the safety of residents.
It ignores the elephant in the room, that the autistic have been made cash cows.
There is no care for them, except drugs and encagement.
One autistic boy in Calderstones ‘care’ is nearly 12,000 a week.
With no improvement. Why ?
Tianze Ni has been two years encaged at £4500 per week and is much, much worse than when he was taken.
And, the horror is, they create bad behaviour by the treatment the autistic are given and the worse the behaviour becomes the more they can claim for the care.
This is hardly a recipe for appropriate care.
the issue of funding is massive across all health and social care settings, the ability to recruit good staff and train them properly is impossible on current funding levels. I am an assessor in this field, working on modern apprenticeships to train and develop new staff in the field. They are so downtrodden and disheartened that they work long, hard and unsocial hours that are soul destroying because they do not have the time to care for the people they are there for…. As I have been told many times they could go and work in Lidl for a lot more and would not feel like such a failure at the end of the day. People who have autism are being supported in the community by staff who have very little training and are being paid the minimum wage, they are not receiving any sort of specialist support, they are left with no options for during the day once they leave school…. We are in an absolutely dire situation and there will be some catastrophe occur soon that wil force this issue. The things I see now scare me, not because they are abusive as in winterbourne but because lack of funding means that vulnerable people are left without support for far too long. I have known older people who have dementia to wander the streets on a regular basis (sometimes in a state of undress) be left to do this as social services have assessed their needs as just needing support to prepare meals, I have seen parents send their child who has additional needs into a care home because they can not cope at home and social services have refused to fund extra respite for them….. Social services have then had to pay for 24/7 support instead of a few extra hours per week to allow the parents to charge their batteries and meet the needs of their child. The situation is far bigger than people who have autism, every vulnerable person in our society is being let down by the current underfunding of the system and the lack of common sense approach to supporting people.
As the parent of a young adult with autism, severe learning difficulties and significant health problems, i endorse Mary Langan’s sober analysis of the situation facing adults such as him. i cannot see his support needs ever reducing and he is typical of so many. His current support workers are already on scandalously low pay and they have to work long, anti-social hours in a job that is often stressful and exhausting. This inevitably impacts on staff retention which in turn makes it very hard for the quality of support to be sustained. No wonder, as Langan says, failures such as Winterbourne View and Connor Sparrowhawk’s death, reflect problems which are entrenched in the care system. i can’t see how anything will improve until we have a more generous funding climate – a crucial first step to addressing the system failures.
Well done Ms Langan for skewering completely the cosy and conspiratorial belief that big improvements can be made whilst resources are being cut and cut hard. I am always worried when the ideological agenda (in this case de-institutionalisation) comes together with the need to save money. It all seems far too convenient. The oft-repeated expectation that “communities” somehow can and will pick up care and support responsibilities is just not credible or likely.
The social care sector reminds me of the carthorse in Animal Farm whose response to every problem is to get up earlier and work harder – my recollection is he either drops dead or is sent off to the knacker’s yard.
The plight of people with autism and learning disabilities in Britain today has something in common with that of the poor of Ireland during the famine of the 1840s. They too were the focus of numerous inquiries, official reports, parliamentary debates, journalistic exposures – and also of an abject failure by the government to provide the resources necessary to tackle the underlying causes of their predicament.
As Mary notes, the tragedy of Connor Sparrowhawk is only one of many cases of premature death in the community. A recent Swedish study reveals that the life expectancy of somebody with autism and learning disabilities is 40 years; it is likely to be less in Britain. It is perhaps unfortunate for the British government that people with autism and learning disabilities are unable to emigrate to the USA, like the one million who escaped the Irish famine.
I do not have learning difficulties nor do I look after anyone who has learning difficulties. So you may wonder why I am responding to Mary Langan’s excellent article. The article and subsequent responses highlight many of the problems that beset the delivery of ALL care services whether they be at home or in a different setting. Whether they be for a person with learning difficulties, a frail elderly person or someone who is physically disabled or all of the above.
As a care service user. I receive 10 hours of care per week which costs £8,320 per year and is £3.500 over my Disabled Living allowance. My weekend care agency charges over £27.00 per hour and my weekday service charges approximately £15.00 per hour. The carers get £7-8 per hour from the most expensive agency and £9.40 per hour from the least expensive. All to get me in and out of bed daily and shower me once a week. I’m told the differential between pay and cost is all to do with economies of scale. I also note that the annual returns for both companies appear relatively healthy. Go figure.
There is dearth of care workers generally. Most agencies are always looking for more staff. In particular it is hard to find staff to cover weekends. I don’t know what the drop out and retention rates are but judging from my experience I expect that they are quite high.
The majority of the care workers are kind and considerate particularly in the light of the demands placed upon them by bad timetabling, unreliable public transport, inadequate housing, long and unguaranteed working hours and so on.
And if that isn’t enough inadequate training, lack of practical and emotional support for carers be they agency workers, relatives or care home employees all take a massive toll and so the numbers dwindle.
The reality is that carers are among the lowest paid, most highly exploited, least supported and challenged workers in our community. I don’t know the demographic but I suspect that the majority are women from poorer backgrounds who want to do a worthwhile job which is neither appreciated or valued by government.
The effect on the person cared for can be disastrous. Missed sessions, late or early attendance, incompetence, personality clashes insecurity about who, when and how the service is to be delivered. Some clients suffer in silence because they know how hard life is for the carers. The fact that there are relatively few disasters is to the credit of and at the expense of carers dedication and client forbearance.
Direct payments will not solve this problem. Putting the power in the care workers hands with the help of central government and councils, both monetarily and practically, might. I don’t know whether anyone has set up a care cooperative but I think that something along these lines might be a step in the right direction.
Television and government talks about problems coming in the future with an ageing population. Don’t they know we are in crisis now. Don’t they
see that writing reports and crystal ball gazing will not solve this problem.
There is a third issue that desperately worries families “what is going to happen after we are gone?”. In the current funding climate, every annual review is a potential battleground. Once parents can’t stand up for their ‘children’ because they are frail, incapacitated or dead, they fear that the care package will be eroded and placements will break down.
The politically correct rhetoric about ‘community’ is risible. Case examples of successes in supported living with personal budgets tend to focus on disabled individuals who have reasonably good (sometimes excellent) cognitive abilities or those who have extensive family support and live in small towns with relatively low costs of living. Usually these cases have been part of pilot projects using extra funding. Locally, we are told that, once council services close, the market will develop activities for those with severe learning disabilities and behaviours that challenge. This is wishful thinking of no mean order. For private companies to set up new services they would need to feel very confident that personal budgets will be generous enough to cover real costs for users and their support workers. It is hard to believe that this will happen. More likely, people with complex needs will be holed up in meagre living units with the highlight of the day being a walk round the local garden centre – that is until they have a meltdown and the police are called.
This article is well argued and prescient. Mary Langan highlights the unequal effects of ‘austerity’ and the ways in which cuts to services fall disproportionately on the people who are, in many cases, least able to object. When austerity measures affect the lives and wellbeing of people with autism and learning disabilities it is, yet again, families who must roll up their sleeves and fight for their family members’ rights. Atomised services of the kind envisaged through (ever reducing) personal budgets are unlikely to meet the needs of people with complicated support requirements and rarely allow for the creative and enriching work which many care workers crave. It’s well past high time for the elephant to be named.
Apart from the gross cost, there is the issue of who pays. Hospital placements (mostly) are NHS funded whether in NHS or private facilities. Community facilities are mostly LA funded and means-testable. When people go into hospital (for other than very brief periods) they often lose their community funding and/or tenancies. Discharging someone from a hospital does not free up the nominal weekly funding unless a whole hospital/ward closes. Much lip service is paid to joined-up thinking but stated intentions flounder under the pressures of organisational budgets with separate requirements for “efficiency” savings.
Elephants never forget.
Perhaps Stephen Bubb or his Commissioner could ask the elephant in their room to cast her memory back to how funding was kept in mental health and learning disability budgets for many years after the closure of the old Victorian hospitals in the 1980s and 90s. Those institutions held many more thousands of people than are in Assessment and Treatment Units now.
The money went like this: revenue funding went to district health authorities to set up community teams and smaller, more local in-patient wards and day facilities. Funding for community support went to local councils for the majority whose main needs were for social care. Capital funds, provided in advance of the sale of the hospital sites, were used to buy houses in local communities to be group homes and step down hostel places which helped people develop daily living skills and move on to independent housing. Thousands of people were resettled, on balance successfully.
There was a small cohort of people whose specialised care cost much more than average, some with the sort of needs now seen in ATUs. Their actual care costs were ring fenced and passed to the council of origin for their lifetime care. The logic was that the NHS would ‘save’ the money by closing the institution, but should not pass the cost of the most disabled people onto councils who had never been funded for that level of need. It was called the ‘Old Long Stay’ budget.
There was a list of actual people and the cost of their care, and every three years it was reviewed. The council sent someone out to see what was happening to these people, talked to families if they had them, and, as community services got better at supporting complicated people at home, devised plans together for them coming back to the local area. We used their individual Old Long Stay budget line to pay for 24 hour support costs and adapted housing, as part of jointly agreed council and NHS strategies to support ordinary lives in local places. For all but two people, about whom there was a cast iron consensus that their placement was right for them, moving home was possible. Care might cost the same, but quality of life and connectedness was far better.
Can’t the revenue costs to the NHS of the ATU placements be treated in exactly the same way now? The money is there, enough to cover the most complicated continuing care needs.
There are far fewer people involved; most London boroughs had single figures in the WV census in 2013/14. There are good models of care, training for staff, partnerships. Thoughtful, consistent, responsive commissioning is possible if the task is prioritised, and given space to develop what the individual, family and community need.
Elephant says ‘it was done then, do it now’; list the people, list the costs, transfer the money, make sure its used right. Old Long Stay, maybe crude but it worked.
There is one big difference. The state owned the buildings then. They funded up-front the purchase of properties for specific groups of people on the expectation of selling the old sites at a good price. They can’t do that now the buildings are owned by private sector companies, whose care fees include covering the cost of their mortgages, but whose profit from rising land values will never be shared.
As the system fragments, flexibility falls through the cracks.