Indications of shock and disbelief came from all quarters of social media from watching the Panorama program Undercover Care: The Abuse Exposed. While I had to force myself to watch, it was sadly not news for me. Like the whistle blower, disabled people have long been voicing our misgivings about how people with learning difficulties[i] bear the brunt of disability hate crime. It is not so long ago that Fiona Pilkington committed suicide [ii] because she could no longer bear the abuse; she contacted the police no less than 13 times in the year of her death.
When a case such as the Panorama program highlights these real occurrences, there are knee jerk reactions and righteous noises about the support workers – and rightly so, some of them were arrested. But these abuses are, sadly, not rare and it also misses the crux of the issues.
These support workers were working in an environment (and society) which has no respect or regard for disabled people. They see them as ‘patients’ to be restrained and vent their boredom in bullying and abusing the people in their charge to pass their time. There was no supervision, no managerial support. It’s all very well to vilify them but there are some bright ideas afloat that unemployed people should be sent ‘to serve the community and take care of disabled people’. Disabled people are held hostage by the label as the ‘most vulnerable’, as subjects to be ‘taken care of’ and also, in this scenario, as punishment. Support workers are badly paid and as we can see in the program, scarcely trained. I am fortunate enough to know many support workers who care about the people they support in the community but these sterile ghettos/ care institutions where people with learning difficulties are kept locked up are not the type of places they would chose to work given a choice. These ‘inmates’, because that’s what they are effectively are rather than patients, are not for all intents and purposes, ill. They are disabled people. Moreover the treatment meted out to them by being kept in such institutions causes additional mental health issues.
Clare Wrightman, Director of Grapevine, Coventry, a charity that helps people with learning disabilities to grow their lives tells us:
‘As an advocacy organisation we know that people with a learning disability are on the receiving end of abuse and ignorance, especially in the new institutions. In the Panorama expose independent advocates were completely absent. Our workers are a vital part of safeguarding the most vulnerable.
Why did we close long stay institutions run by the State as part of government policy only for local government to commission new ones from the private sector? People can be supported to live in their communities close to the people who really care about them’
Ellen Clifford, who has worked within the People First movement said:
One point I do think needs to be made is how traditionally there is such a risk averse approach to support for people with learning difficulties, favouring segregated institutional based care. This programme shows the extent of the dangers that are faced by people placed in exactly those type of settings that are purported to be safer for them as opposed to being supported to live independently in the community.
the Quality Care Commission (QCC) clearly failed when it was given evidence of abuse on a plate which it ignored. There needed to be improvements in its systems. However as Panorama rightly identified, the core issue is that locked institutions should not be allowed to exist. The programme at times described people as “not being able to look after themselves” and as having the mental age of children, however that approach fails to recognize the abilities, talents and contributions which all people with learning difficulties have; as one of the programme experts said at the end, there is no reason why any of those people could not live better in the community with support.
The privatisation of care homes must be seen as a factor contributing to the existing abuse at places such as Winterbourne. Private companies are seeking to make a profit from an industry which is already severely underfunded, the outcome can only be inadequate quality of support with the subsequent incidences of abuse. Supporting people with challenging behaviour is a complex and difficult job which requires intelligence (high levels of both IQ and EQ), understanding and training. You do not get support workers with that mix of skills and attributes for the kind of wages that the the so-called care sector pays. Not when you consider the executive salaries which are also paid out to the Directors.
The coalition government is pushing for a Big Society but without state intervention and regulation to ensure people get the support they need, there is every danger, as the Panorama programme provided evidence, of cultures of abuse becoming more widespread and accepted.
The programme highlights the key value of user led organisations: one of the experts described how the staff cannot have viewed the patients as “human beings just like them” in order to have engaged in the treatment they did. Where disabled people are visibly part of service commissioning and provision we can provide a constant reminder that we are indeed people just like them. If we don’t want people in our society to be abused as seen on Panorama then society needs to invest in our organisations.
Jim Mansell from the Tizard Centre, Kent University was one of the experts in the programme. What is highlighted on the Panorama programme is already detailed in a chilling report by him and his colleagues.[iii]
What we want to know is when is this austerity driven government going to see that this privatised, institutionalised care is not cheaper but that it costs disabled people and their families dear in depriving them of their human rights to live independently with support in the communities that includes them.
[i] Disability hate crime needs to be tackled https://www.guardian.co.uk/society/2011/jun/01/disability-hate-crime-keith-philpott
[ii] Fiona Pilkington case: police face misconduct proceedings https://www.guardian.co.uk/uk/2011/may/24/fiona-pilkington-police-misconduct-proceedings
[iii] Exploring the incidence, risk factors, nature and monitoring of adult protection alerts, Jim Mansell et al.