Thursday, 29 December 2016

The right to "live in the community with choices equal to others": Human rights and People with learning disabilities and/or autism

I belong to a group called Keep Our Human Rights in Suffolk. Our aims are: to promote greater awareness of the relevance of human rights to people in Suffolk in their everyday lives; and to champion a better quality of debate about and celebration of human rights locally.  For the last year, we have been submitting Freedom of Information requests to the Suffolk Clinical Commissioning Groups (who purchase healthcare on behalf of us all) about people with learning disabilities and/or autism who have been placed in specialist in-patient facilities. 

This blogpost explains why we’re doing this, what we’ve learnt and what the relevance of all this is to human rights.
The origins of the legal framework of human rights are to be found in the acceptance that it is wrong for the state to act in a way which denies dignity and freedom to individuals on the basis of their membership of a specific group.  

Over many years, there has been much evidence that the state, in the form of health and social care services (and on behalf of us all), has acted in ways which deny dignity and freedom to people with learning disabilities and/or autism.  From the scandals of long-stay hospitals in the post-Second World War era through to their modern versions - such as Winterbourne View - time and again appalling treatment has been revealed, while services and government have vowed to ‘learn the lessons’ to avoid such things happening again.

The publicity about Winterbourne View prompted the government to promise in 2012, that by 1st June 2014, people with learning disabilities and/or autism who were in such institutional settings would instead receive “personalised care and support in appropriate community settings”.  In 2015 they admitted that this promise had not been fulfilled and another three year programme was announced, the Transforming Care Programme, to “enable people to live more independent lives in the community, with support, and closer to home”.

During the same period, it has been recognised that there is institutional discrimination in the way the NHS treats people with learning disabilities - discrimination revealed by investigations into unnecessary deaths which resulted from a failure “to provide the most basic nursing care such as nutrition, hydration and pain relief, and .. denying people dignity and respect”. 

One terrible example of the consequences of failing to meet people’s needs was to be found in the experiences of Connor Sparrowhawk and his family.  Connor was an 18 year old who, in March 2013, was admitted on a short-term basis to an Assessment and Treatment Unit because the services were not provided to enable his family to support him safely at home. He drowned in the bath at the Unit in July 2013 - a death which an inquest found was entirely preventable.  Southern Health NHS Trust admitted that it had breached his and his family’s human rights under Article 2 of the European Convention on Human Rights, the right to life.

This was followed by a review which sought to establish how many unexpected deaths there were in the Trust’s services between 2011 and 2015 and how many were investigated.  The review found that if you had a learning disability or were over 65yrs old and using mental health services, there was very little chance your death would be looked into. 

The #JusticeforLB campaign - a campaign to get justice for Connor and his family - prompted the #7daysofaction campaign by other families whose loved ones are in Assessment and Treatment, or other in-patient, Units.  These are young people who should benefit from the current Transforming Care Programme which requires health and social care commissioners to develop local Transforming Care Plans to develop the community services necessary to move people out of existing in-patient units and prevent future admissions. 

Keep Our Human Rights in Suffolk (KOHRS) have been trying to find out, for a year now, how many people with learning disabilities and/or autism from Suffolk are in specialist in-patient facilities and what plans there are to enable them to access their human right to a private and family life, to dignity, and to independent living. 

We have received contradictory and confusing responses to our Freedom of Information requests, and - despite email exchanges and a meeting with health commissioners - we are still not clear how many people are in specialist in-patient units, or what investment in services will be made to enable them to return to their local communities.  Suffolk’s Transforming Care Plan (TCP) was placed on their website but important information was missing and none of the hyperlinks to supporting documents worked.  This Plan has now been removed from the website. 

One particular concern we have is that we also received information from NHS England about the number of Suffolk residents in placements that had been commissioned centrally rather than by local health and/or social services.  These people did not seem to figure in the initial TCP and, when we asked Suffolk commissioners about them, their response was “We cannot account for differences in figures”. Although we have sent them the information that NHS England provided to us, the local commissioners - both health and social care - have refused to discuss this any further.

We also have concerns about the services of the main local service provider in Suffolk, the Norfolk and Suffolk NHS Foundation Trust.  This Trust has been the subject of a vigorous local campaign about the cutbacks in, and inadequacies of, its services and the scale of ‘unexpected deaths’.  The recent inspection by the Care Quality Commission identified concerns about services for people with learning disabilities and/or autism, in particular the safety of services, the level of restraint and the involvement of patients and their families in decisions about their care.

We have found that it is hard to make sense of the information available to members of the public, including that which we’ve obtained through Freedom of Information requests.  Yet, if there is one common message that runs through the unsatisfactory history of how our fellow citizens with learning disabilities have been treated, it is that a lack of public scrutiny makes possible the abuse of human rights.  We all need to understand what public services are doing on our behalf.

Maybe Suffolk’s Transforming Care Plan will deliver the ‘ordinary life’ for people with learning disabilities and/or autism that has been too often denied.  Maybe there isn’t anyone who has ‘disappeared’ into the system - as seems to be indicated by the discrepancy between the NHS England and the Suffolk figures. Maybe - despite the crisis in social care funding - local services will be developed and funded that deliver true choice and control to people with learning disabilities. Maybe specialist services will no longer be associated with inappropriate medication or restraint.  Maybe in future services will be responsive to people with learning disabilities’ health care needs so that they will not die, on average, 13 years sooner than the average for men, and 20 years earlier for women.

Our concerns stem from the fact that the evidence is not in the public domain to assure us of any of this.  Our concerns also stem from the fact that human rights should be at the core of how the needs of people with learning disabilities are responded to - but we see no evidence of this.  When the necessary investment and changes to services are not made, basic human rights, such as the right to a family life, are likely to be withheld. Every day that those responsible do not act is another day in the degradation of people’s lives. Making information scarce, and a low commitment to sharing it, is itself a barrier to ensuring their human rights are protected and promoted.

The underlying principle of human rights is that they are universal - by definition they apply to us all by virtue of our common humanity. A failure to acknowledge and uphold an individual's or a group of people’s human rights is a denial of their humanity. As the Supreme Court confirmed in 2014  “Human rights have a universal character….” and this applies to everyone, “regardless of their disabilities”.

Not only are people with learning disabilities and/or autism accorded the same human rights as other human beings but the United Nations Convention on the Rights of Persons with Disabilities confers specific rights to “live in the community, with choices equal to others”. Moreover States that ratify this Convention (as the British government has) are required “to take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:
  1. Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;
  2. Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;
  3. Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.”

KOHRS believes that all those responsible for developing local Transforming Care Plans should have these rights at the forefront of everything they do.  We will continue to try and find out whether that is the case in Suffolk and we hope that others will similarly raise these issues in other localities.


  1. It isn't just Suffolk where the transformation plans are innaccessible and the hyper links don't work! Maybe they don't work nationally! All the above can also apply to physically disabled people too.

  2. Thank you Jenny, this post is most timely and well argued.

    1. Hi Jan I thought I'd replied to this but I think it may not have got sent. Anyway thanks for reading and good to hear from you!

  3. Brilliant post Jenny, Winterbourne shamed the Government into taking action and subsequent revelations spotlighting appalling non-care and neglect have resulted in a huge amount of ongoing work through Transforming Care that is beginning to make a difference albeit far too slowly.

    As local areas begin to gets to grips with what all this means in practice and as someone who is involved in my own area sharing my experience as a parent of a son with very complex needs living well and having his needs met in a specialist residential home, I often think of the phrase ‘be careful what you wish for’.

    My fear is that despite some additional funding being made available centrally penniless local authorities and CCGs have not been given the resources to make it happen. If we are not careful we are going to end up with many vulnerable people living in their communities in virtual isolation being supported by poorly paid and demotivated staff as a direct result of care providers struggling to cope as budgets are driven down by cash strapped local authorities and CCGs.

    For the same reason we also face the prospect of quality of life being poor due to a lack of staffing. My Authority for example is attempting to force Providers, by cutting fees, to reduce staffing ratios to save them money. This is going to mean less access to the community as activities are cut back accordingly. For example it is clear to me that those requiring 1:1 or 2:1 support in the community will end up stuck indoors most of the time as living a normal life becomes unaffordable.

    I am also very concerned at the prospect of those with very complex needs and challenging behaviour(like my son) living on their own with support as both the person and their staff require a high level of support including robust training and supervision. If this is not done there is a risk to the resident and staff alike. As a parent I would not be satisfied that my son was safe in this environment.

    The alternative and some would say sensible compromise is to build small blocks of flats where people can live together separately in their own flats but with staffing within the block able to respond more effectively to varying needs. This is what my Authority is doing. Nothing wrong with that, I am sure many will be satisfied but isn’t this the same as residential living?

    The important and fundamental thing we need to focus upon are the needs of each individual and not what ‘box’ we put them in so whilst we all campaign for the closure of institutions let’s all ty and make sure that the result isn’t even worse.

  4. Thanks Ian. The picture you paint is very bleak but I fear realistic. And the danger that institutional care is replaced with something not much better is one of the reasons we need to keep human rights to the forefront of our messages about what is required.