By Neil Crowther
This piece was first published on 9 February 2016 in Independent Living Debate, a blog hosted by the author.
The right to an independent living is recognised in Article 19 of the UN Convention on the Rights of Persons with Disabilities
It feels almost impossible to think about opportunities to advance independent living in England, such is the parlous state of the public finances and recent direction of public policy. But in the spirit of the motto of this blogsite to ‘make hope possible, rather than despair convincing’ I’m going to have a go. After all, the early pioneers of independent living did so against often unimaginable odds and some of the chief victories of the disability movement happened not under a centre left, but under a conservative government.
From social welfare to social investment
The first thing I want to highlight is how so called ‘austerity’ is not always cover for public spending reductions, but for public spend re-allocation. That is, recent government policy has often been about re-engineering the State to serve a different purpose, not necessarily shrinking the State (though that is clearly a goal as well). Such re-engineering in places appears to signal a trend from a social welfare state to what one might call a ‘social investment state.’ A prime example is the policy of 30 hours a week free childcare for households earning less than £100,000 a year. Here, a significant investment of public resources is designed, it is hoped, to increase labour market participation, increase tax revenues, decrease benefits expenditure and improve children’s life chances. Contrast this with social care, which continues to be viewed not as an investment but as the spiraling cost of an ageing society and is suffering eye watering cuts, or disability benefits, which suffer misrecognition and stigma permitting recipients only to be cast as ‘on the take’ or ‘vulnerable’. Can we learn from the repositioning of childcare, not as a personal private matter, but as part of the public infrastructure and demonstrate the public interest case for investment in independent living? This demands both credible, compelling evidence, new ideas for policy and clever strategic communications – something the DRILL programme might usefully support.
Halving the disability employment gap
Some regard this government goal with suspicion and the fact that policy makers and think tanks consistently start by identifying the primary ‘problem’ as the design of benefits and their effect on individual ‘incentives’ to work does little to assuage concern that the real goal is to extend sanctions (including in relation to failure to pursue courses of health treatment and rehabilitation) in order to cut benefits.
However, the commitment is also throwing new light onto the problem of barriers to employment for disabled people. The government has already decided to replace the Work Programme and to increase spending on Access to Work, and a White Paper is on its way.
DWP has pilots underway involving the use of personal budgets to pay for bespoke employment support. The creation of the joint Department for Work and Pensions/Health ‘Disability and Health Employment Unit potentially offers opportunities to pick up where the Right to Control left off in looking beyond narrow ‘employment support’ at the wider supports a person might require to engage in the labour market. Moreover I feel there is a chance to reposition employment as a building block, rather than mere outcome or expression, of ‘independent living’ – in particular as a route to social connections, challenging the isolation that often predicts wider exclusion. In this sense, employment and employers become part of the means to the end of independent living.
Health and social care integration
Again, people have many legitimate concerns about what this will mean in practice: that the cultures and approach of the health service will dominate, undermining the social model of disability both at a theoretical level but also in everyday practice as clinical decision making and health outcomes trump everything else; that what money is available among the NHS and local councils narrows down to focus only on ‘healthcare in the community.’ Conversely there are concerns about the implications of integrating two systems based on very different traditions of funding and entitlement.
Yet at the same time there are many areas where the doctrines of early action and prevention coincide with independent living and where the steps required to promote health and well-being are essentially the same as those long pursued by independent living advocates. For example I recently did some work in Scotland where disabled people in one city had been asked about their priorities for health and well-being. Top of their list was having somewhere to go and something to do. Here we can see the goals of choice, control and participation coincide the aim of overcoming isolation. If resources could be levered out of acute healthcare towards supporting participation under the rubric of prevention of isolation, this strikes me as an opportunity to grab hold of.
Law Commission review of the Mental Capacity Act
With a draft Bill expected this year, the Law Commission consultation on replacing Deprivation of Liberty safeguards proposed that they be replaced with a new system, to be called ‘Protective Care’. The Law Commission suggest that
‘This system is not focused on authorising deprivations of liberty, but instead upon providing appropriate care and better outcomes for people who lack mental capacity and helping their family and carers.’
Bit of a tangential one this perhaps, but patient safety is a major priority for the current health secretary, mostly because of the Mid Staffs scandal but also in light of the death of Connor Sparrowhawk. While his focus may be on what happens to people in hospitals, it nevertheless also raises the question of why some people are in hospitals as opposed to being supported (and treated) in the community. Certainly the recent meeting of Connor Sparrowhawks parents with the Health Secretary indicated that this was the way he identified the problem.
Care Act implementation
We should make the very most of the opportunity presented by the Care Act. Yes, it seems absurd to talk about social care as offering any opportunities in the face of the scale of cuts being implemented, but at the same time we have a number of key things enshrined in law and the opportunity is to positively shape the manner in which they are implemented – whether information and advice, care plans, personal budgets or independent advocacy. This is partly about monitoring, such as the report produced by the Independent Living Strategy group last year. But it is also about promoting ideas and showcasing best practices – about influencing by demonstrating the art of the possible. In particular, it is about showing that independent living, far from being a problem, offers much needed solutions.
Beyond the State
Finally, I have concentrated here on the role of the State in advancing independent living, but in practice what makes the greatest difference in the years to come is likely to lie beyond the State – new technologies, the changing nature of the workplace, social action, new civil society institutions, social attitudes. I will explore these in a separate post soon.
I am sure there are other opportunities, just as I am sure people will regard what I say above as hopelessly naïve, but I look forward to the debate.