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"why We Meed An Enforceable Right to Independent Living"

Editor's Note: Jane Campbell, then Chair of the Commission for Social Care Inspection and DRC Commissioner, delivered this keynote speech at the DRC (Disability Rights Commission) Public Debate: The Right to Independent Living, March 2, 2004.

Independence is something we all strive for, for it gives us confidence to tackle life's challenges. To me, Independent Living is inextricably linked to FREEDOM.

To withdraw or prevent an individual's independence must therefore be considered a punishment; after all, that's often how parents discipline children (you're grounded) or society deals with criminals. To this end, I would contend that Independent Living is a fundamental human right of disabled people, and to deny it is tantamount to punishment.

And what is the crime? To be too expensive to support in the community? Or to be over six stone--too heavy to lift? Sometimes it feels like we are being punished for shortcomings of a social care system that finds it almost impossible to respond flexibly to meet Our Independent Living need.

On 2nd October 2000, when the UK government introduced the framework to take cases under the Human Rights Act, the then Home Office Minister, Jack Straw, said the intention was to do more than require government and public authorities to comply with the European Convention. "Over time," he said, "the Human Rights Act will bring about the creation of a human rights culture in Britain." Disabled people have much to gain from the philosophy of personal freedom and equal dignity that underpins the European Convention on HR, as it fits well with the fundamental principles of Independent Living.

So what are these fundamental principles of Independent Living as developed by the disabled people's Independent Living Movement?

Most people think it means "doing things for yourself", for example, cooking your own breakfast, driving your own car or washing your own hair. Whilst, for some, this may be an important feature of their personal independence, for many others it is not. For many disabled people, the effort of achieving such physical independence traps them in a lifestyle of unceasing hard work that simply curtails independence.

"Independent Living" means that disabled people have access to the same life opportunities and the same choices in every day life that their non-disabled brothers and sisters, neighbors and friends take for granted. That includes growing up in their families, being educated in the local neighborhood school, using the same public transport, getting employment that is in line with their education and skills, having equal access to the same public goods and services. Most importantly, just like everyone else, disabled people need to be in charge of their own lives, need to think and speak for themselves without interference from others.

Here are some examples of disabled people's definitions of Independent Living:

  • Independent Living is a dynamic process. It is about creating choices and identifying solutions. It is a way of life that grows as you grow and develops as you develop. (John Evans, quoted in Making Our Own Choices)

  • I'm a husband, a father and a breadwinner. And ten years ago I was in an institution where you couldn't even decide when to go to the toilet ... You know, you can't really understand [Independent Living] if you haven't done it ... Your whole life changes. ("Jack" quoted in Independent Lives by Jenny Morris)

  • Independent Living is the concept of the empowerment of disabled people and their ability to control their own lives. (The National Centre for Independent Living)

  • Independent Living is speaking for oneself. Deciding where I go and what I do. (People First, London)

My own definition is that Independent Living is a state of mind, rather than a mental or physical capability.

In order to reach the same control and the same choices in everyday life that non-disabled persons take for granted, a number of prerequisites are necessary. For many physically disabled people like myself, the most important Independent Living requirements are personal assistance and accessibility to the built environment--accessible housing, for example. For other disabled people, perhaps those with learning difficulties or impairments that make communication difficult, advocacy and communication support are more critical. Without such services and environmental change, hundreds of disabled people can only choose between being a burden on their families or living in an institution, both of which run counter to the concept of Independent Living.

Services that support the development of Independent Living like Community Care Direct Payments, and the Independent Living Funds, are the result of a long historical campaign for alternatives to institutionalization--whether in care or at home. It is too easy to forget that there are people who are effectively "institutionalized" in their own homes because they haven't the means to go further than the front door, or worse still, their beds.

Under the existing framework, disabled people can in fact direct their personal assistance support in a way that suits their chosen lifestyles. In practice, however, professionals in the health and social services find it difficult, if not impossible, to apply the philosophy of Independent Living when it comes to community care assessment. This is because existing community care policies and services place undue emphasis on assessments by "social care experts", of a person's "vulnerability" and the potential risks, which they pose, either to themselves or to others.

The idea that disabled people are "vulnerable people" who need to be protected and "cared for" only serves to reinforce perceptions of disabled people as passive "recipients of care", rather than active citizens facing practical barriers to Independent Living. Assessing need through a filter of vulnerability produces the wrong solutions.

The "care" approach to assessment is also based on a functional view of independence. As Ann Macfarlane puts it, "IL means more than being able to make yourself a cup of tea and feed the cat."

The dominant model does not view people who use support services as fully rounded human beings, with the same needs and aspirations as everyone else. As Gerry Zarb said in his paper to the European Network on Independent Living (ENIL) conference last year:

"It's more like that they are implicitly viewed as mere 'vessels of care' that--putting it crudely--you feed at one end and clean up at the other!! (Sorry, but it makes me angry)."

The Independent Living Movement has been pushing for new ways to assess a person's support requirements. These are to be based on a social model approach that identifies the barriers to participation rather than an individual's physical or mental incapacity. A social model approach is strengthened by the Human Rights Act because rights such as the Right to Liberty, the Right to Respect for Private and Family Life, and the Right to Freedom of Movement are inextricably linked to attitudinal and environmental barriers.

However, even with an assessment based on minimizing the barriers to participation, there will always be disabled people whom, in order to exercise choice and control over their lives, require advocacy and other supported decision making resources, to better enable access to services. Such resources are essential to enable people access to their human and civil rights.

Without advocacy and other Independent Living support services, many people--especially older disabled people--will "choose" the residential care option because they do not see any viable alternatives, and/or because they are called upon to make such decisions in a time of crisis. By default, most adult disabled people of any age will accept a traditional assessment of their need.

There is also a pressing need for access to advocacy for people who are already living in institutions. Although National Care Standards are supposed to require examination of options for leaving residential care as part of the review process, the evidence demonstrates that this is not adhered to routinely.

Advocacy services are often found in Centers for Independent Living (also known as CILs). CILs are community-based organizations that are controlled by disabled people and provide a range of services that improve our access to Independent Living. CILs help us exercise our right to participate equally; to remain in the community. The right to a family life and parenthood has been central to CIL activity. The larger CILs encompass access to all aspects of society, including mainstream education, training, employment, welfare and support services, housing, transport, public buildings, leisure and information.

There are 15 CILs in the UK and a number of similar organizations who provide roughly the same kind of services although they do not call their organization a CIL. These centres for Independent Living have been a critical network for supporting Independent Living over 20 years.

AND YET, despite most people's intellectual acceptance that Independent Living is a fundamental human right, disabled people still find themselves living in institutional settings against their will. As so often happens in all walks of human endeavour, the gap between words and action must be narrowed.

The housing support charity, John Grooms, reported last year that 8,000 young adults are living in care homes primarily designed for older people. Between 1997 and 2002, the number of people with physical and sensory impairments in local authority supported residential and nursing care showed a modest decrease from just over 10,000 to just under 9,000. For people with learning difficulties, on the other hand, there was an increase of nearly 20% from 25-1/2 thousand to more than 30,000. The figure for users/survivors of the mental health system or the psychiatric system is even more dramatic, rising by more than 40% from about 8,000 to above 11,000.

The Valuing People Support Team also estimates that there are still around 1,200 disabled people in long-stay hospitals (Personal Social Services statistics). While acknowledging that some disabled people, after considering all personal support options, choose to receive their support in a residential setting, I think it is deeply troubling to note that there are nearly 300,000 people supported by local authorities in institutional care, and less than 8,000 people currently receive direct payments to enable them to live independently.

Why is this? Well, mainly because the funding structure of the community care system creates a financial incentive for the use of institutional care. If this is not the entire answer to the question "Why", it is certainly the main one. There are significant numbers of disabled people who have attempted to leave residential care, only to be told their support costs more than their "placement!"--that they exceed the Local Authority "usual cost policy".

Strangely enough, the more familiar local authorities become with Direct Payments and notions of independence, the more they seem to lay down policies whereby these so-called "expensive" users have little option other than to return to, or stay in, residential care.

I will give you an example of a woman who lives in an authority where they have taken analogous care cost very literally. She had been living in one room in a home for five years. The local Centre for Independent Living had worked with her to put together a personal independent living scheme. She had found a flat, assessed her needs in partnership with her social service care manager, prepared herself diligently for employing Personal Assistants, doing everything from preparing job descriptions to learning PAYE. At the eleventh hour the Local Authority pulled out because the Direct Payment was going to cost the authority

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