Change that leads to better lives

Guest Blog by Neil Crowther, independent consultant

We are pleased to introduce a guest blog by Neil Crowther who is an independent consultant focusing on the implementation of equality and human rights in the UK and internationally, with a particular interest in the rights of disabled people.

Neil 2010

We will only close institutions by opening up the world

‘We demand voice, choice and FREEDOM!!’ roared over a hundred people with learning disabilities who gathered from all corners of the UK to call for an end to institutionalisation at an event organised by CHANGE and Lumos in June.

As story after story has revealed, institutions are not places of safety but of extreme vulnerability. Even in the absence of violence and abuse, institutions rob people of their dignity, their identity, their autonomy, confidence and self-esteem. They damage physical and mental health. And when their power combines with their neglect they sometimes allow people – young people like 18 year old Connor Sparrowhawk – to die. It is without doubt that such institutions present a profound risk to human rights, utterly at odds with the UK’s commitment to comply with the United Nations Convention on the Rights of Persons with Disabilities.

It’s deeply depressing that, fifteen years into the 21st Century, the demand for the closure of institutions in the UK should still be necessary at all. That it should be prompted by the abject failure of the government to deliver on its post-Winterbourne promise to have affected a ‘dramatic reduction in hospital placements for this group of people and the closure of large hospitals’ by June 2014 makes it evenmore so. The fact that the numbers in ‘hospital-style institutions’ has actually risen above 2011 figures in recent months should be a national scandal.

So why does this systematic abuse of human rights largely go unchallenged? Sadly it is I believe a consequence of deep-rooted prejudices regarding the value andcapabilities of disabled people – and people with a learning disability in particular – that prevail in our society. As the academic Luke Clements has argued, disabled people are still often not considered ‘ripe for freedom’ in the same way that women, serfs and southern blacks once weren’t.

Complacency is also born of (mis)conceptions of what an institution is (or is not).To this end we should thank Baroness Hale for her insight when handing down judgement in the Cheshire West case that ‘a gilded cage is still a cage.’ Roses around the front door – or even residents expressing a sense of security or happiness – should not blind us to restrictive and coercive regimes of ‘care’ incongregate living arrangements.There are at least 35,000 adults with learning disabilities in various forms of local authority funded residential care, at a cost of over £3 billion per year.

But those of us who do seek an end to this situation also stand accused of complacency if we fail to recognise that the hallmarks of institutionalisation are frequently to be found outside the gates of institutions. Isolation, segregation and lack of control blight the lives of many people with a learning disability, who continue to be overwhelmingly absent from our workplaces, classrooms or neighbourhoods, depriving both them and the wider community of interaction. Such unfamiliarity breeds contempt. Hostility is a common experience. Discrimination is rife. Many rely entirely on immediate family for support (including a growing number of parents in old age) rather than the wider community. Where people receive statutory support a custodian model of care continues to prevail over a facilitative model of independent living. These are the conditions in which the case for plenary guardianship and institutionalisation – such as that made by the Daily Mail journalist Rosa Monckton (whose adult daughter Dominica has Down’s Syndrome) - thrives.

This is why I believe we must recognise and frame the challenge in front of us not simply one of closing down institutions. It is critically about taking steps to open up the world (what Steve Eidelman has called ‘second order de-institutionalisation).

So how can we meet this challenge? Here are 5 steps I believe could make a difference:

  1. Stop spending money now on expensive institutional provision. Chris Hatton set out an excellent plan in his blog post ‘the Winterbourne of our discontent’: close such services to new admissions, cease to register them and take money away from those commissioners that persist in funding people to be in such places.
  2. To help make this happen and to plan alternatives, people with a learning disability that use services and support should be centrally involved in commissioning, employed as staff within local authorities and the NHS. The co-worker model employed by the human rights organisation CHANGE provides a model of how this can be done.
  3. Money saved by closing down these astronomically expensive institutions should be invested in developing the supports people require to assume control over their own lives such as assisted decision making, peer support, advocacy and brokerage. A national network of local access to living centres, led by and involving people requiring support could perform these roles.
  4. In addition to supporting individuals, a key function of access to living centres should be to help build social connectedness, to marshal informal supports and to promote the receptiveness of the wider community – including employers – to the inclusion of people with a learning disability. We should draw on thinking from other fields such as the work of Miles Hewstone regarding ‘social contact’ as the means to overcome prejudice and to build acceptance.
  5. Finally, we must ask whether this ‘redistribution’ of resources from institutions to community supports is sufficient to secure deep and lasting change. Michael Bach, Chief Executive of the Canadian Association for Community Living, has argued that ‘the institutionalized patterns of social and legal misrecognition of people with intellectual disabilities run so deep that we need some ways of restructuring widespread perception in the face of such historic and systemic abuse of power’. Bach has suggested that a ‘truth and reconciliation’ commission would allow Canada to move forward. I think this is an idea that merits active consideration here in the UK.

A tall order maybe, but as the world’s most famous freedom fighter Nelson Mandela once said ‘it always seems impossible until it’s done’.

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