By Jenny Morris
I haven’t been able to blog for a while but recently two key questions have got me thinking…
The first was a challenge from Catherine Hale, who leads the Chronic Illness Inclusion Project, put to me and a few others: “The term Independent Living” she said, “does not seem to have resonance for people with chronic illness and has been corrupted by those implementing Care Act in the service of cutting costs”.
The second was a blogpost by Chris Hatton posted as part of the #socialcarefuture debate. He asked: Is social care as we know it fundamentally bust?
Linking the two challenges has led me to ask: Is it time for us to admit defeat and abandon the term ‘independent living’ to describe our aspirations as disabled people? If so, how can we articulate these aspirations in a way which addresses the current problems with social care? And what would that mean for what we now call ‘social care’?
I don’t want to focus on the question of whether the term ‘independent living’ is particularly problematic for people with chronic illness, partly because it deserves consideration completely separate from the question of the current state of social care. However, the second reason Catherine gives for questioning its continuing relevance – the way the term has been corrupted by those implementing the Care Act – is relevant to all groups of disabled people and is directly related to Chris Hatton’s challenge.
So to start by addressing the challenge to the term ‘independent living’ (but emphasising this is just my attempt to open up debate rather than my firm conclusion):
1. Maybe we have to admit that talking about ‘independent living’ is not useful to us at this point because we have failed to achieve general acceptance for our insistence that it should mean ‘having choice and control over the support needed to go about daily life’. Instead, many working in health and social care, and also the general public, still take these words to mean ‘doing things for yourself’. Moreover, too often it seems the terms ‘independent living’ and ‘independence’ are used to deny the reality of someone’s support needs. The rationing of services goes along with an unequal power relationship between the person who needs support and those responsible for funding and delivering it, and can result in a denial of needed assistance in the guise of encouraging ‘independence’.
2. At the same time, we need to recognise that independent living was never just about social care. Yes, its origins were in replacing institutional and institutionalising services with direct payments, which enabled people to employ their own support workers, but this didn’t deliver what we meant by independent living unless other barriers were addressed: the barriers to accessible, affordable housing, transport, to employment, to participating in family and community life and so on. This wider vision is reflected in the last Labour Government’s Independent Living Strategy which defined independent living as:
Having choice and control over the assistance and/or equipment needed to go about your daily life; and
Having equal access to housing, transport and mobility, health, employment and education and training opportunities.
That Strategy envisaged:
a single community based support system which focuses on all aspects of what people [of all ages] need to maximise their health and wellbeing and to participate in family and community life. The right of the individual disabled person to determine the kinds of services and support that they need will be at the heart of this reformed system.
3. We need to return to the roots of what disabled people in the 1970s and 1980s were trying to achieve. When I was carrying out research on independent living in the early 1990s, I consulted with the British Council of Disabled People about what the term meant. The first principle they identified was that “all human life is of value”. This echoes the UN Declaration of Human Rights: “All human beings are born equal in dignity and rights and all life is of equal worth” which is also, of course, the starting point for Article 19 of the UN Convention on the Rights of Persons with Disabilities (CRPD), the right to independent living.
As the UN’s Committee on the CRPD pointed out, “The foundation [of Article 19] is the core human rights principle that all human beings are born equal in dignity and rights and all life is of equal worth”. Article 19, they explains:
has its roots in civil and political as well as economic, social and cultural rights: The right to liberty of movement and freedom to choose one’s residence (art. 12 of the International Covenant on Civil and Political Rights) and the right to an adequate standard of living, including adequate clothing, food and housing (art. 11 of the International Covenant on Economic, Social and Cultural Rights) and to basic communication rights form the basis for the right to live independently and be included in the community. Liberty of movement, an adequate standard of living as well as the ability to understand and have one’s preferences, choices and decisions understood, form indispensable conditions for human dignity and the free development of a person.
This makes clear both how comprehensive the concept of independent living is within the international human rights framework, and also how a denial of independent living is a denial of human rights.
4. In the current context, where the term independent living has – as Catherine Hale says – been corrupted by those responsible for implementing the Care Act, perhaps we need to frame our aspirations and our demands in terms of human rights. Articulating our aspirations in terms of our human rights would enable us, for example, to see the rationing of support to a level which prevents people from even going outside their own home, or which forces them into residential care, as a human rights abuse. It would also enable us to see a failure to recognise how someone communicates as a human rights abuse. Segregation and isolation from family and community would be seen as a human rights abuse as would many other features of the current broken system of social care.
5. The answer to Chris Hatton’s question is that, yes, social care is fundamentally bust. This is partly because our society has not chosen to put enough resources into what is currently called ‘social care’. We used to talk about how the question was not so much the level of resources put into such services but how the money was used. But we are now in the situation where there is widespread agreement that not enough money is going into social care. The problem is that this is only being brought home to politicians and the public because of the impact on the NHS and the danger is this agenda will only identify solutions in terms of what social care can do to prevent hospital admissions and delayed discharge. Instead, we need to ensure that this political and public debate includes a wider vision of community support which enables people, whatever their age, impairment or circumstances, to access their full human rights.
6. But it is not just about the level of resources, important though this is. Social care is also fundamentally bust because we have constructed methods of rationing and of delivering such services which mean they cannot be relied upon to protect and promote older and disabled people’s human rights. Direct payments, the original mechanism which aimed to deliver choice and control, were intended to place decision-making powers in the hands of people who needed support to go about their daily lives. Personal budgets were similarly intended to empower people who did not want to employ their own support workers but who – through being able to control how the resources to which they were entitled were spent – would thereby have choice and control. Neither have fully delivered on this vision, partly because it is hard to change the local authority culture which relies on bureaucratic processes to maintain control – and this even harder when budgets are cut back so significantly. And partly because the so-called ‘market’ in social care is dysfunctional – there isn’t a real choice of service provider for either local authorities or self-funders, and one in four social care providers do not even provide ‘safe’ care, according to the CQC. Social care is just another privatisation which hasn’t delivered.
7. But, as I wrote in a previous blogpost, the answer is not to go back to state provided services – that doesn’t address the power imbalance. Instead, the answer is to develop new ways of delivering support services, such as user-led services and co-operatives – not old style charities run by the great and the good with the values of ‘doing unto people’ but non-profit community-led organisations which are truly accountable to those to whom they provide a service: support which is designed and delivered for the community by the community. Vidhya Alakeson, Chief Executive of Power to Change, gave some examples of this in her blogpost – and incidentally, Vidhya mentioned that some communities no longer even have a cafe where they can meet “to plan a different, better future”; but my community now does thanks to Power to Change part-funding our new community shop and community cafe.
8. New ways of both delivering and commissioning services also require some fundamental changes to how we make decisions about how to raise resources and what level of resources should be put into community-led services. In that previous blogpost I argued that the current system of means-testing social care is unjust because it is a matter of luck as to who needs a substantial amount of care for themselves or a family member. The NHS is funded on John Rawls’ principle of the ‘veil of ignorance’ – in other words no-one knows whether they are going to be struck down by serious illness and it is therefore in all our interests that healthcare is funded by a progressive taxation system to ensure that health care is there if and when we need it. This is the same basis on which community support services should be funded. Community-led, not-for-profit services should therefore be funded out of our society’s collective resources, free at the point of use.
9. However, decisions would still need to be made about how to allocate those resources. We therefore need to think about developing new and more democratic ways of commissioning services. Chris Hatton mentioned participatory budgeting in his blogpost, and there certainly seems enormous potential for promoting deliberative democratic decision-making in both the allocation of resources and in the delivery of support. But we haven’t been bold enough yet in this country; instead we have only tried to make gains within existing systems and there is inevitably a limit to which this can bring about real change. We have talked about co-production but even where this enables genuine participation it does not enable control over resources and thus does not tackle much deeper issues about democratic decision-making. We need to be experimenting with mechanisms which “give people real power to effect change in their lives, communities and beyond“. We need to use an idea like participatory budgeting to give local communities real power to determine how resources are used.
10. So my answer to both the challenges posed by Catherine Hale and Chris Hatton, is: let’s frame our aspirations in terms of our human rights and let’s redesign and properly resource a system which is collectively funded, free at the point of use, and where resources are democratically allocated to forms of support which are designed and delivered by and for local communities.