Introduction – independent living in a time of austerity
We start with an apparent dichotomy – the demand to advance disabled people’s right to independent living yet having to do so in the context both of the financial climate we are in and increasing demand for ever more scarce resources as we all live longer lives.
Many of us may disagree with the economic and other policies of the Government in Westminster and their impact at local level – that they are cutting too far, too fast, or that the cost of deficit reduction is being disproportionately borne by the poorest in society.
Disability organisations and their allies are of course correct to resist and challenge cuts and to highlight their impact. But we are merely sticking our heads in the sand if we avoid confronting the reality that the overall envelope is and will continue to be much reduced for the next decade at least, no matter which Party (or Parties) is in power at Westminster. Even when the economic climate improves, our ageing society will place major new demands on the public finances.
But what if we were to start with the idea that the real dichotomy is between the old way of doing things and the economic and demographic pressures we face. That far from being a problem, independent living as a way forward offers a much needed solution?
What is independent living?
First, we need to clarify what we think we mean by independent living.
Too often we think about independent living solely as being about the nature of the transactional relationship between an individual and public services. As a consequence when we think about independent living as a human right, we think of rights to services and support or how they are organised.
The clue to this mistake is in the words.
It is about ‘living’, not services. Independent living is a state of being and doing – a freedom.
The UN Convention helps us make sense of it in these terms. Article 19 of the Convention places obligations on States to take measures to ensure that disabled people enjoy their equal right to live in the community, with choices equal to others.
It situates the Convention’s general principle of promoting autonomy and self-determination in the context of disabled people’s right to choose where and with who to live.
It is about liberty, with particular regard to not being forced to live in an institution of any kind
And it is about inclusion and full participation in the community
Teodor Mladenov from Kings College London argues that the notion of “being-in-the-world” provides the most fruitful point of departure in disclosing the full scope of the CRPD’s meaning and significance and that the perspective informed by this notion does not undermine agency — rather, it highlights the social and material conditions that make agency possible.
It is the freedom for a person to interact with and within their community on equal terms, for it is that interaction that sustains inclusion, prevents isolation, and though which our will and preferences can find expression.
The legal academic Colm O’Cinneide has noted that ‘The vision of rights embodied in the (disability) Convention is thus based upon the recognition that individuals with disabilities are not self-sufficient monist entities, but rather depend upon collective social action to make provision for their basic rights. The Convention therefore articulates a very different vision of rights from that embedded in the US Constitution, for example, where individual rights are primarily conceived as imposing negative constraints upon the state in order to maximise individual autonomy’ (O’Cinneide, 2009, p. 164).
Similarly, Arnardóttir and Quinn (2009) argue that ‘In truth, all persons (whether disabled or not) depend on social supports at least at some point in their lives (especially when young or at the onset of old age) to make freedom and choice a reality. This underlying reality is simply more obvious in the case of persons with disabilities (though not for all of them). If one sought tangible proof of the interconnectedness of both sets of rights [i.e., civil and political, on the one hand, and economic, social and cultural, on the other] then disability is the obvious example. It is plainly not enough to enact anti-discrimination laws to break down arbitrary barriers. It is also necessary to assist people in getting past those barriers. The deeper paradox — one that obtains for all persons — is that personal freedom ultimately relies on social solidarity’
The Convention therefore advances a very different concept of autonomy and independence from that which can be found in much human rights law, or popular philosophy which underpins much public policy here and in Europe.
It is about the relational self, not the atomised self. It bridges the gap between human rights thinking on the one hand, and the human condition on the other. We are none of us truly independent, we are interdependent.
I would argue that by starting with this perspective we will be led to some quite different solutions and we will find ourselves challenging existing ones.
Personalisation is not the same as independent living
At present public policy regarding independent living typically limits itself to the transactional relationship between the individual and public services. This is because independent living has for the past decade been hitching a ride with personalisation and the promotion of choice in public services. There have undoubtedly been positive benefits of this shared journey but it is and can only ever be a means to the end and as such only a part – albeit an important part – of what is required to protect, promote and ensure disabled people’s right to independent living.
Firstly of course it is only available to those declining numbers who are assessed as eligible for support.
Second, these developments have done nothing fundamentally change the underlying assumptions regarding the case for social security and public service support and the rules regarding their allocation both in practice and in public discourse. They have confined themselves to ‘form’ without addressing ‘function’. As a consequence they continue to be based upon a ‘deficit model’ of disability with eligibility focused upon compensating lack of agency, not identifying the support necessary to facilitate agency and inclusion. This is far from being an exclusively British problem. As a recent report of the US National Disability Council put it “public policy remains entrenched in the 1960s-era all-or-nothing approach to serving people with disabilities, in which a person must demonstrate inability to be productive to be deemed eligible for critically important supports.”
And thirdly, these approaches centre entirely on the individual and so rely on the individuated notion of autonomy and agency that the UN Convention challenges. As a consequence this approach has failed to address inequalities in the capacities of different people to exercise agency and doesn’t generally seek to explore how autonomy and inclusion can be augmented and sustained through action to knit people into their communities. The Scottish Self-Directed Support Act 2013 is interesting to these ends, including as it does a general principle that the person’s right to participate in the life of the community in which the person lives is to be respected. This recognises that participation and inclusion are not simply the ends of independent living, they are central to the means by which independent living is realised and sustained.
The results of this general gap in thinking and approach include the unequal distribution of the benefits of personalisation, people living geographically in the community but without meaningful social contact, given life and limb support but not the support to participate in social and economic life, and ever more dependent on diminishing statutory services rather than drawing on naturally occurring supports around them.
This is not the fault of personalisation, it is the failure to develop it and to recognise its limitations.
Refreshing the independent living agenda
So how might we move forward? I propose action across three areas in particular
- We require much deeper reforms to public services and to parts of our social security system
- We need to develop what I call the choice and control architecture
- And we need a new strong focus on creating the infrastructure and the ecosystems of support which helps embed people in their communities
At each level disabled people’s participation must be regarded as the engine and the marker of progress.
Reforming public services to build on assets, promote innovation and remove red-tape
On public service and social security reform, we need to develop an asset-based approach to the targeting and distribution of resources, focused above all else on addressing the barriers people face in taking charge of their own lives and in participating socially and economically. This should include short-term targeted support as well as life-long assistance.
I believe by doing so we will be able to make better decisions about where to invest and where to achieve savings through a clearer sense of the impact such decisions are likely to have both for individuals and the wider community and economy. The task of determining eligibility should involve disabled people, both through self-directed and peer assessment and be based on a holistic appraisal of the barriers individuals face. We must call time on hired medics making dubious functional assessments to achieve targets.
Disabled people seeking or receiving support frequently face more red-tape than the average small business. There is no justification for this level of red-tape at a time when people are losing the support they require just to get up in the morning, to clean and to eat. So a progressive disability rights agenda will focus on removing unnecessary bureaucracy. I was recently told of a centre for independent living which, working with their local council, identified £1 million of savings by moving from monthly to annual monitoring of direct payments.
Related to this, so many decisions which pertain to the ‘risks’ faced by disabled people are in fact driven by the fear of liability among public authorities. We need a grown up debate about how to end this liability culture which perverts decision-making, constrains disabled people’s rights and which adds needless costs and bureaucracy. We need to be guided by the idea of the ‘dignity of risk’ – that risk is the essence of life, that with autonomy and responsibility comes risk and that things sometimes go wrong.
We need to release the cap on innovation. The true potential of self-directed support lies in the opportunity of individuals to creatively achieve their aspirations outside of traditional service models: The carer who used a direct-payment which she had been given to buy respite from caring for her husband to purchase a season ticket for someone to support him to watch his favourite football team; The man with mental health problems who used his direct payment to hire an actor to help him manage anxiety during job-interviews, who went on to get a job.
Rather than government and public bodies commissioning services against detailed specifications, they should act as the ‘venture state’, seeking out promising approaches with the potential for high social returns and investing in them. Disabled people should be centrally involved in the commissioning process.
Developing choice and control architecture
If more people are to be in charge of their own lives we need to put in place the supports which help people navigate that path. This ‘choice and control architecture’ should include three elements: information and advice, supported decision-making, and consumer protection.
Disabled people’s user-led organisations are ideally placed to provide expert information, advice and peer support and should be supported to do so, both through public investment and supporting such organisations to become cooperatives or mutuals if they so wish.
Though the Mental Capacity Act in England and Wales marked significant progress it is still focused on adjudicating one-off problems rather than promoting supported decision-making across the life-course. Such an approach tends not to probe deeper into why decision-making deficits exist and whether concerted social action might be taken to mitigate them, or to explore the individual or social assets that might be harnessed or augmented to enable people to remain in charge of their own lives. The model ofrepresentation agreements in British Columbia or the approach envisaged in the Indian Disability Rights Bill focus on identifying and kindling support networks for enhancing capacity and we should learn from them. On-line communities forged through social media are becoming a major source of information and mutual support among disabled people and their allies and clearly offer opportunities to augment people’s decision-making capacities.
Our regulatory approach has not kept pace and requires further reform – personalised support requires personalised regulation. We should be thinking about consumer protection models, which create both empowered citizens and consumers and which can investigate and deal with complaints when things go wrong.
Building inclusive communities
Finally, we need to develop approaches and tools which help create more inclusive communities. An asset-based approach needs to extend beyond the individual to encompass the harnessing of assets or potential assets in the world around them.
If we recognise that all of our lives are sustained – of let down by – the infrastructure and ecosystem of support around us it tells us that people’s exclusion derives from the failure of that infrastructure or absence or breakdown of their ecosystem of support
Of particular relevance is the degree of social connectedness – the challenge a young adult with a learning disability may face in establishing one, the fact that with age we too often see those connections erode. Building inclusion then is the business of re-building that connectedness, fixing the infrastructure and tending to the ecosystem.
Genuine social inclusion demands efforts to knit people into ordinary community supports such as via ‘circles of support’ or through initiatives such as ‘Shared Lives’ via which disabled adults come to live with a family rather than move into supported living or residential care. The ‘Think Local, Act Personal’ initiative is focusing on ‘building community capacity’ to these ends, while in Scotland there is increasing interest in ‘asset-based approaches’. Business can play a critical role in building community capacity, such as the ‘Safe in Doncaster’ (S.I.D.) initiative, via which shops and café’s sign up to offer sanctuary to adults with learning disabilities who believe themselves to be experiencing or at threat of abuse or hate crime.
We have come some distance in the area of accessibility and inclusive design, but have we come far enough? Many parts of our built and travelling environment remain out of bounds to disabled people. It would help to understand why it is that some towns, cities and transport systems have become far more accessible than others, and address implementation gaps, not just grab for further law and regulation. As far as I am aware, such analysis has not been conducted and hence implementation not benefited from such insight – a clear gap to be filled.
To legislate or not to legislate?
Much of what I have outlined isn’t about new laws, regulation or more services but about ensuring existing law and regulation is implemented, changing practices and culture, getting rid of waste, releasing innovation and removing the things that stand in the way.
I am though sceptical as to whether it can realistically happen without the nudge of law. Certainly that was the conclusion of the Joint Parliamentary Committee on Human Rights followings its inquiry into disabled people’s right to independent living.
That’s why in England I’m planning to work with others to develop proposals for an Independent Living Bill as a vehicle for implementing Article 19 of the UNCRPD. One initial idea is for a duty on national and local government and other prescribed public authorities to have due regard to the right of disabled people to live independently and to be included in the community and to require them to involve disabled people in the manner by which they discharge that duty.
The Bill would clarify a bottom line for national and local government, while requiring them to work collaboratively with disabled people and the wider community to develop and sustain the conditions which enable the right to become a lived reality.
It may take law to make it happen, but I genuinely believe that looked at this way, independent living can provide a sustainable path to the future for disability rights.
 Mladenov, T (2012) The UN Convention on the rights of persons with disabilities and its interpretation ALTER, European Journal of Disability Research
 O’Cinneide, C. (2009). Extracting protection for the rights of persons with disabilities from human rights frameworks: Established limits and new possibilities. In O. M. Arnardóttir, & G. Quinn (Eds.), The UN Convention on the rights of persons with disabilities: European and Scandinavian Perspectives (pp. 163–198).
 Arnardóttir, O. M., & Quinn, G. (2009). The UN Convention on the rights of persons with disabilities: European and Scandinavian perspectives.