Learning Disability – Making Lives Matter

“Day centres are closing, partly due to the massive cuts to social care budgets, but also because collective services are a poor fit with the notion of personalised support”

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The proposal this week to appoint a Learning Disability Commissioner can be seen as an expression of frustration by Sir Stephen Bubb, who has conducted a review of learning disability residential services after the scandal at Winterbourne View. In 2011 a Panorama programme used secret filming to show abuse and neglect of people with learning disabilities in a residential unit near Bristol. Since then there has been a national drive to move more people with learning disability out of such units and into the community, prompted by Bubb’s initial report in 2014. Since then Bubb has spoken out several times about the lack of government progress on his recommendations, which included the creation of a Charter of Rights for people with learning disabilities. Reflecting on the lack of progress as the final report was published this week Bubb told the BBC, ‘We don't value the lives, let alone the deaths, of people with learning disabilities.’

The social media campaign around #JusticeforLB gives a powerful illustration of the lived experience of this. Connor Sparrowhawk – known as Laughing Boy (LB) – was a young man with autism, learning disabilities and epilepsy. In March 2013 he was admitted to a specialist inpatient unit designed to assess and treat learning disabled people who may be experiencing anxieties or challenges. He drowned in the bath at the unit, in what his family have argued was an entirely preventable death. The local NHS Foundation Trust attempted to explain the incident ‘as death by natural causes’, but an independent report later found that the ‘level of observations in place at bath time was unsafe and failed to safeguard’.

The response to Winterbourne View and to the death of Connor Sparrowhawk - and the many other people with learning disabilities who die prematurely each year – has been to focus on minimising the use of inpatient and care home settings, in favour of community settings where people can connect with families and friends. This sits well with a broader approach to person-centred support within community social care services. Researchers in the School of Social Policy at the University of Birmingham have explored different aspects of this personalisation agenda in which care and support is more closely oriented to the individual. We know that many people with learning disabilities and their families have taken up the opportunity to take their care spend as a personal budget and that many of them report more control and better outcomes.

Community-based services have their own problems though. Day centres are closing, partly due to the massive cuts to social care budgets, but also because collective services are a poor fit with the notion of personalised support. Just as long-stay residential institutions have become discredited, so too have day centres, which have been seen as a way of ‘warehousing’ people in segregated settings. However research by Mencap highlighted the extent to which the shift to personal budgets, in a context of large scale budget cuts, is leading to people being ‘Stuck at home’. Personalisation, like the deinstitutionalisation narrative that accompanied the closure of long-stay hospitals for mental health patients, is having more success as a narrative of closure and critique, than as a stimulus for the emergence of new collective spaces. Our research, conducted with people with learning disabilities as core searchers, found that people with a personal budget didn't necessarily have anything to spend it on and that opportunities to do things with friends, through pooled budgets, were particularly underdeveloped.

A Learning Disability Commissioner and a Charter of Rights is crucial in providing some further policy impetus as memories of Winterbourne View fade, but the focus on the move out of residential settings is not the end of the story. We need concerned efforts to stem the savage cuts to care funding, and to offer people the opportunity to have the choices they want to make in the community. This is key to responding to the challenge that Bubb sets down: to make lives matter, not just deaths.

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  • Judith Hegenbarth
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    1. At 4:15PM on 08 March 2016, Judith Hegenbarth wrote

    I'm a parent governor at a special school and the mismatch between what is promised (i.e. education/training until the age of 25) and what can actually be provided is staggering. Our special school is investigating how it can provide services itself (it has the expertise and is training very talented staff), but they won't be able to provide nearly enough places.

    Personalised budgets are all very well if you have something to spend them on - I can see how young people are becoming 'stuck at home'.

    When my 13 year old son reaches school leaving age, will I have to give up work to look after him?

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