Tuesday, 6 March 2012

Fulfilling potential or potential unfulfilled?

‘Fulfilling Potential'  is a discussion document, published by the government’s Office for Disability Issues.  They have asked for responses to it by 9th March.  The process is intended to inform the forthcoming Disability Strategy which, according to evidence given to the Joint Committee on Human Rights by Maria Miller (Minister for Disabled People), will build on the Independent Living Strategy and take the UN Convention on the Rights of People with Disabilities “as a starting point”. 

‘Fulfilling Potential’ is full of the kind of language used by the disability movement, promising a tackling of barriers and to promote choice and control.  Its approach is thus underpinned by the social model of disability and by disabled people’s definition of ‘independent’ as being, not about ‘doing things for yourself’ or self-sufficiency, but about having control over the support needed to go about one’s daily life. 

Yet the document sits alongside, and steadfastly ignores, a raft of welfare reform policies which, far from recognising the social, economic and environmental barriers experienced by disabled people, assume that unemployment, impairment and ill health are a result of individual states of mind – lack of motivation and ‘dependency’. These policies are based, not on the social model of disability, but instead on the biopsychosocial model – a tool developed by the insurance industry to manage claims made on income protection policies. 

Disabled people have a vision of a welfare state which, through a progressive taxation system, would make resources available to help create a level playing field for those who, without such additional resources, would not experience the same opportunities as non-disabled people.  The UN Convention  – and in particular Article 19 – is recognition that without such provision disabled people’s human rights are at risk.

In contrast, current welfare reform policies assume that to rely on publicly-funded benefits and services is a ‘bad’ thing, to be avoided and reserved for a residual group of the most ‘vulnerable’, the most ‘dependent’.  These policies assume that provision for disabled people has been too ‘generous’, creating unnecessary ‘dependency’, and therefore  stricter criteria need to be applied to qualifying for disability benefits together with sanctions in order to ‘motivate’ people into economic independence through work.

A glaring omission in the Fulfilling Potential document is any reference to a key policy development led by ODI - the Right to Control Co-produced with disabled people, the Right to Control is based on the social model of disability, and is ‘a new legal right’ which gives disabled people choice and control over the support they are entitled to from the state.  

The Welfare Reform Act of 2009 gave the government powers to set up ‘trailblazing’ areas (and to regulate for a subsequent national roll-out) where disabled people have the right to have control over resources from six different funding streams covering social care, housing support and adaptations, and employment support. The Right to Control had all party support and, until its strange omission from the Fulfilling Potential document, the assumption had been that this current government was committed to rolling it out nationally. Indeed, Maria Miller, in giving evidence to the Joint Committee on Human Rights last year, spoke warmly of the Right to Control trailblazers, praising the way they were ‘empowering’ disabled people and recognising the importance of co-production.

The Right to Control is underpinned by the principle that disabled people are experts in what barriers they face, and in how to address those barriers. It is delivered in partnership with disabled people’s organisations and has been co-produced and is being co-delivered with these organisations.

In contrast, current reforms to out of work benefits, and the delivery of the Work Programme, are based on a model which assumes that the main barrier to employment is individual motivation and attitude. These reforms are imposed on disabled people, who are not assumed to be experts in their needs and barriers or in how to address either. They are at best paternalistic and at worst punitive. They are a prime example of the state thinking that it knows best.

Two funding streams, aimed at helping disabled people into and to keep paid employment, are part of the Right to Control trailblazers.  Disabled people are thus being given control over resources they are entitled to under the Work Choice programme (the specialist employment programme) and Access to Work.  Such experiences must be in stark contrast to those disabled people receiving services from the Work programme where it is Job Centre Plus civil servants and service providers such as A4e who are considered to be the ‘experts’ as to how best to help people into work. Far from being in control over how to use resources, disabled people in these situations face losing their benefits if they don’t do what they are told to do (including unpaid work for unlimited periods).

Early evaluation of the seven trailblazer areas indicates the kind of changes that need to be made if employment support programmes are to have good outcomes – for example the Work Choice guidelines had to be changed so that, instead of only being able to go on courses which were felt to be inappropriate (such as writing a CV) or on ones which had been attended before, individuals could use their Work Choice funding to pay for a vocational course more suited to their needs.

‘Fulfilling Potential’ uses language and is (seemingly) underpinned by an approach which is completely at odds with the language and approach which currently dominates welfare reform.  ODI should have the courage to promote the Right to Control and to apply its approach to welfare-to-work policies.  Like the Right to Control, policies and services which aim to increase employment rates amongst disabled people should be co-produced and co-delivered by disabled people and their organisations.  Such policies and services should recognise that disabled people themselves are the experts in their needs and in the barriers they face, and in how resources should best be used to address such barriers.

Much of the innovation and progress in adult social care over the last 30 years has come from the pioneering and campaigning work of disabled people’s own organisations.  It is about time that those concerned with welfare benefits and with ‘welfare-to-work’ programmes learnt from this and started working in partnership with disabled people and their organisations to both co-produce and co-deliver more appropriate and less disempowering policies.

Thursday, 1 March 2012

Lords and MPs call for a legal right to independent living

For over 30 years, disabled people have been fighting for a right to independent living.  And today the Joint Committee on Human Rights (JCHR) calls for a right to independent living to be incorporated into the UK’s legislation.

The term ‘independent’ is usually taken to mean ‘doing things for yourself’, being self-sufficient.  Importantly, in the current political context it is often used to mean not being ‘dependent’ on the state. 

Disabled people don’t mean any of these things when we use the term ‘independent living’.  Instead it means having choice and control over where and with whom we live and over the support, adaptations or equipment needed to go about our daily lives.  Without such choice and control, disabled people’s human rights are at risk.  This was first identified by people like Paul Hunt, living in a Leonard Cheshire residential home in the 1970s, who insisted that it wasn’t his impairment that restricted his opportunities but the way that the Home dictated what he could and couldn’t do.[1]

Simon Brissenden, another pioneer of independent living, argued in 1989 that
Independence is not linked to the physical or intellectual capacity to care for oneself without assistance; independence is created by having assistance when and how one requires it.[2]

And in the early 1990s, a group of activists involved in the British Council of Organisations of Disabled People, came together[3] to articulate the underlying philosophy of independent living:

·        that all human life is of value;
·        that anyone, whatever their impairment, is capable of exerting choices;
·        that people who are disabled by society’s reaction to physical, intellectual and sensory impairment and to emotional distress have the right to assert control over their lives;
·        that disabled people have the right to participate fully in society.

One of the results of the international campaign for independent living – and the links made to human rights – was the United Nations Convention of the Rights of People with Disabilities, which came into force in 2008. 

Article 19 of the Convention concerns the right to independent living and the JCHR calls for this right to be incorporated into domestic legislation.

In the current context of attacks on the benefits and services that help to create a level playing field for disabled people, the JCHR find that there is a risk that the UK is going backwards as a result of the cumulative impact of these reforms. As a result of evidence presented to them, the JCHR have concluded that:

·        the tightening in eligibility criteria for adult social care
·        the replacement of Disability Living Allowance with Personal Independence Payment
·        the closure of the Independent Living Fund, and
·        the changes to housing benefit

all risk contravening Article 19 of the UN Convention.

The report also points out that the right to independent living applies as much to people living in residential or nursing homes as it does to those living in their own homes – a welcome recognition given the continuing evidence of a denial of basic human rights that is all too common in communal provision.

The Committee heard evidence that a right to advocacy, and to independent advice and information, is a cornerstone without which independent living may be unachievable for many.  They therefore called for implementation of Section 2 of the 1986 Disabled Persons Act, which concerns the right to advocacy but was never enacted.

Government Ministers, in their evidence to the Inquiry, used the language of the disability movement. They spoke of a support for choice and control, for equal rights and independent living. This report – thanks to the evidence that disabled people presented to the Committee - exposes the gap between their words and their deeds.  

[2] Simon Brisenden, ‘A Charter for Personal Care’ in Progress, 16, 1989. Disablement Income Group.
[3] This discussion was part of a research project I carried out in 1991-2 on independent living.  It was published as ‘Independent Lives? Community Care and Disabled People’, Macmillans, 1993.