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.”
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.
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.
“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.
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