Eleanor Roosevelt, 1958

'Where, after all, do universal human rights begin? In small places, close to home -- so close and so small that they cannot be seen on any map of the world. Yet they are the world of the individual person... Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.' Eleanor Roosevelt, 1958

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Saturday, 15 January 2011

One month before heartbreak: The human rights cost of the cuts

This blog post is dedicated to the Broken of Britain's One Month Before Heartbreak blogswarm campaign to raise awareness of the impact of the cuts on people with disabilities and their carers. The campaign invites blog posts on related topics from all members of the community; as a researcher in human rights for adults with disability and dementia this is my contribution.

Today in Parliament Maria Miller gave us her assurances that the DLA reforms would not directly violate human rights law. I confess, I haven't examined the small print and don't feel able to comment on whether these particular cuts will be found to directly infringe human rights. As a wider issue though, it seems inevitable to me that in the course of time the cumulative impact of cuts to welfare, social care and related public services will be implicated in human rights violations for some of the UK's most vulnerable citizens. Trying to spell out exactly how the austerity cuts will impact on human rights in the UK is like trying to predict the consequences of global warming: almost every informed sane individual on the planet admits they will cause devastation to thousands of lives, but it's very hard to predict exactly how and where. Loving a challenge, I'm going to try and outline some of the ways the cuts are likely to impact on human rights in social care.

  1. Cuts to mobility DLA in care homes will reduce opportunities for residents to access the community; the Mencap report gives convincing evidence that local authorities will not make up this shortfall. For some individuals who lack mental capacity, whose choices and freedoms in residential care are already very limited, this loss of opportunities to access the community and keep up social contacts may tip the balance towards a deprivation of liberty. The DoLS draft code of practice explicitly stated that if people are not supported to access the community, this could lead to a deprivation of liberty. When Steve Scown from Dimensions UK writes that people may become prisoners in their own home, lawyers' ears should prick up. The European Convention on Human Rights Article 5 gives a range of reasons why it might be permissible for someone to be deprived of their liberty – because it's cheaper isn't one of them.  Article 8 rights to development of the personality may also be infringed without opportunities to be involved in the community and activities; the right to family life may also be implicated if loss of mobility DLA results in significantly impaired opportunities to visit family members.
  2. As the population ages and councils face massive cuts to their central government grant, it seems inevitable that local authority funded social care will be – indeed is being – badly hit. This is likely to have a range of knock-on consequences. With the loss of the ILF and massive cuts to Supporting People grants it will be increasingly difficult for local authorities to fund expensive packages of care in the community, and these care plans may be overlooked in favour of cheaper placements in residential care. This is a retrograde step after decades of working towards improving opportunities for independent living. Families may well be ripped apart as carers are no longer given the support they need to look after their loved ones at home. Just reflect on that for a minute – what is the point of Article 8 of the Convention if not to keep families together wherever possible? Consider this case, of parents who want to bring their child home from residential care but can't do this without an adequate package of care from the local authority. How many more cases like this will see?
  3. When people rely on the local authority to fund their care, the local authority has a duty to consider its resources and find the cheapest way of meeting those needs. We already saw, in a much publicised court case about ballerina Elaine McDonald, how a local authority refused to continue to provide carers to help her with getting to the toilet at night – forcing her to use incontinence pads even though she was actually continent. McDonald, understandably, found this a huge affront to her dignity, but the court found the overriding need to consider resources to be more important. McDonald stated '"I can speak up for myself, but what worries me is what's going to happen to people who can't, people who might have dementia, if they are treated like this?"
  4. Sometimes residential care is a necessity, and community options are unviable. Under unprecedented financial pressure to find the most cost effective placements, local authorities may be forced to overlook issues like keeping families within reasonable travelling distance of each other. For some families this may make it extremely difficult for them to see each other at all. Particularly for those in rural areas and who are dependent on public transport (also likely to be drastically cut), it may be near to impossible to find a way to visit their loved ones. Imagine this: your husband or wife moves into residential care, and you never see them again because you can't find a way to get there. It sounds outlandish, but I promise you it does happen. Or, more commonly, you can get there but it requires you to take an entire day's travel – meaning your visits are limited to weekly or less. Even at the moment, out of county placements are not unheard of for people with very specialist needs. Not so very long ago a court forced the London Borough of Sutton to build a specialist home for a very disabled young woman themselves, so she could sustain regular essential contact with her family. I wonder if the courts would find that way today?
  5. As care providers compete to provide cheaper care they will be forced to make efficiencies themselves, which in turn may result in more restrictive care practices in a variety of ways. As someone who has worked in care for many years myself I can testify that when care providers make cuts to staffing levels or staff hours it becomes increasingly difficult to provide care in a way that is respectful of people's dignity and maximises their freedom. When there aren't enough staff in a care home, for instance, people may be left for long periods of time sitting in soiled clothing, in their own waste, before staff can get to them. When I worked for a domiciliary care provider I remember social workers refusing to fund an extra emergency call for an immobile woman who had been incontinent with diarrhoea: she could wait three hours until the next visit, they said. I wonder how many more times that would occur now (in this case care staff went in their own time, on an uninsured and unpaid visit, to help her out). When service users present with 'challenging behaviour', staff under extreme time pressures are far more likely to reach for the Risperidone than try and figure out what the cause of that behaviour is and find ways to meet the service users' needs. When there aren't enough staff to man a service properly, residents may be shepherded into a single room and the garden will be out of bounds. Activities co-ordinators will probably be among the first to lose their jobs in cash strapped services. Staff training will suffer as council's scale back free courses on dementia care, person-centred planning, the Mental Capacity Act and human rights. In a thousand indirect ways, more than I can detail here, less staff and more poorly trained staff will mean less freedom and less dignity for service users.
  6. As Johann Hari points out in this eloquent piece, brutal cuts to the Care Quality Commission have translated over the years into 75% fewer inspections of care homes. Serious human rights abuses are increasingly likely to be missed under this 'light touch' regime. For people with profound learning disabilities or dementia, for those whose friends and family are not able to visit, not able to recognise the signs of abuse, or not in a position to make a fuss when they do, are at increasingly extreme risk of abuse in a system that relies on the most vulnerable and least able to whistleblow, to raise the alarm themselves.
  7. And finally, I could hardly end this piece without mentioning that for those individuals who do suffer abuse, who are injured or subjected to indignity or are unlawfully deprived of their liberty, cuts to the legal advice and representation they need to access justice may be the most cruel of all. Some, very limited, areas have escaped the legal aid cuts (for instance, those who are subject to the deprivation of liberty safeguards, but not those who are subject to unauthorised deprivation of liberty), but the vast majority of sources of legal help and advice have fallen under the axe. Extra-legal advice services like the Citizen's Advice Bureau has announced closures; advocacy services commissioned by local authorities are coming under threat.  The Court of Protection, already under-resourced from the moment it came into being, is likely to come under increased pressure as more packages of care collapse under the strain. The already lengthy delays to resolve these cases will grow in the face of increasing demand and diminishing resources, often at great personal cost to those involved, and no small cost to the state.
So, I hope this post have given food for thought for any austerity sceptics out there, who would have you believe the Coalition's cuts can be met by greater efficiencies and no suffering. The sad reality that will be borne out over the next few years, unless the government undergoes a radical change in direction, is that the austerity cuts may come at great cost to human rights, to human lives.

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