“For many adults with a learning disability, the violation of their human rights is seen as a normal part of their everyday lives”, states the Joint Committee on Human Rights in a report published earlier this month -- the author explores.
This is a powerful and shocking reminder of the lack of priority given to people with a learning disability within our society.
Having taken oral and written evidence over the course of several months, the JCHR found public authorities, such as NHS trusts, to be violating the human rights of adults with a learning disability in an alarming number of areas. The report details the prolific and regular abuse of rights and the indifference with which these injustices are often met.
The lack of public outcry and media attention when the report was published was shocking. In sharp contrast, a similar report into the human rights of older people in care, published last year, received extensive media coverage. Sadly this reaction, or lack of it, is all too telling of the public’s reaction to people with a learning disability – people who, according to the report, have been “dehumanised” by the negative attitudes and stereotypes held about them. It is these attitudes and the resulting actions that are reflected so clearly in the JCHRs alarming findings.
The JCHR report draws heavily on Mencap’s Death by Indifference report which tells the stories of six people with a learning disability who died needlessly in the care of the NHS. In one instance, Martin, 43, went to hospital having had a stroke. Once in hospital he wasn’t fed for 26 days – he died soon after, his malnourished body unable to undergo the operation needed to save his life.
As a result of Death by Indifference, the then Secretary of State for Health, Patricia Hewitt, commissioned an Independent Inquiry into the equality of access to health services for people with a learning disability. The results of which are due to be published this summer and are widely expected to outline the need for a change of mindset amongst health care professionals.
Of course, health is just one area in which the human rights of people with a learning disability are being routinely violated. The report also highlighted the problems experienced in the justice system, employment, housing and social care for people with a learning disability.
It is in social care that the chasm between policy and practice is most starkly evident. The guidelines in Valuing People and its follow-up consultation document, Valuing People Now, have been widely praised. However, the JCHR calls for the final version to “explicitly promote a ‘human rights based approach’”. But the real challenge lies in translating those policies into actions. In his evidence to the JCHR, an NHS Clinical Psychologist in Learning Disability Services told the committee: “Valuing People was full of excellent recommendations, many of which have either been paid lip service, or have been ignored completely. There is a feeling amongst professionals that it was a lot of rhetoric without legislative reach to ensure that its recommendations would be put into practice. There is still a huge gap between what was recommended and what actually happens.”
But negative attitudes are certainly not the only scapegoat for implementation failure. The JCHR report states – “limited resources are undermining attempts to implement the aims of [Valuing People] effectively”. As Andrew Lee, Chief Executive of People First, said: “If the Government is serious about stopping human rights abuses against people with learning difficulties, then it will simply cost money. If society decides ultimately it does not care enough about people with learning difficulties to spend money on us, then society exists as a society where people are left out, marginalised and abused in our midst.”
All over the country a lack of funding and tightening eligibility criteria is resulting in an increasing number of Councils only providing services for those with the most profound needs. People with more moderate needs are finding themselves squeezed out of the system, having vital support services, such as day centres and respite care, cut. As well as having a devastating effect on people’s lives, cuts in services are also a false economy and jeopardise the Government’s prevention agenda.
Indeed just this month the Local Government Ombudsman (LGO) criticised Birmingham City Council for failing to provide adequate transition services for a young deaf woman with learning disabilities whose need for health and social care support were left unmet. At the same time, Trafford council is refusing to pay the £100,000 compensation demanded by the LGO over a similar failing, while a widely-leaked CSCI report into services in Cornwall condemns the council’s provision of services for people with a learning disability.
The JCHR report makes a number of practical recommendations on how to turn the tide and prevent a continuation of these human rights abuses. It urges Government to actively ensure full implementation of the Human Rights Act, as well as the Disability Discrimination Act and the Disability Equality Duty. The JCHR points to the inadequate pressure from Government, as the cause of the legislation being“insufficiently understood and applied” on the ground.
The JCHR is calling for a duty on public authorities to explicitly promote human rights and for the Government to make that happen by providing leadership through practical guidance. This new duty would also ensure that funding decisions were taken in line with the Human Rights Act and the Disability Equality Duty so those with moderate learning disabilities receive the support they need.
The JCHR further recommends that all health and social care providers be considered public authorities for purposes of the Human Rights Act. The Government has already committed itself to closing the legal loop-hole that currently means that residents of private sector care homes are unprotected by the Act, even if their care is funded out of the public purse. We hope the Government will bring forward an amendment to achieve this in the Health and Social Care Bill which is currently going through Parliament.
As Chief Executive of Mencap, a charity that champions the rights of people with a learning disability, I warmly welcome the excellent work that Andrew Dismore and his team at the JCHR have done to investigate and raise the profile of these issues in Parliament. To have an objective, independent body speaking up on these issues should make the Government stop and think about how the services they provide affect the lives and rights of people with a learning disability.
How Government reacts to the report will be telling. We want to see real leadership from both the Department of Health and other Departments on these issues – acknowledgement of current failures, genuine statements of intent to rectify these and, crucially, ahead of the adult social care green paper later this year, an acceptance that the current lack of funding for adult services is at the heart of this widespread human rights abuse and is something that cannot be ignored.
The facts have been exposed, the shocking truth made public – the ball is in the Government’s court. I sincerely hope they deliver.
