Recently, I’ve been wondering: what happened to our society’s fundamental moral belief that people have inherent value by virtue of being human? When did we start, consciously or sub-consciously, measuring people’s well-being in terms of cost? Is this the kind of society we really want, or is it the result of a political ideology for which very few of us consciously voted?
A number of topics currently in the public domain share at least one important characteristic: they emphasise a worrying shift in our society’s values, a shift whereby our belief in the unique and intrinsic value of each individual is being compromised and replaced by an overriding concern about how much it costs to support those of us who are disabled or chronically sick. A blatant challenge to our long-held belief in the intrinsic value of human life was the recent re-election of Councillor Colin Brewer in the West Country. Councillor Brewer, who had previously resigned when a comment he had made in 2011 about disabled children costing too much became public knowledge, was interviewed by the Disability News Service last week, when he “insisted that he was a Christian, and believed that ‘all life is precious'” but also “repeatedly indicated that he believed there was a good argument for killing some disabled babies with high support needs, because of the cost of providing them with services”. This has understandably provoked an outcry from disabled people and their families and I would be surprised if he remains in office in the longer term.
I’m currently involved in two issues that shine a spotlight on the value we place on the lives and well-being of disabled people: the full hearing in the High Court this week of the applications by 10 sick and disabled people for judicial review of the under-occupancy penalty for housing benefit claimants in social housing (the ‘bedroom tax’); and the publication of a joint report, ‘Promoting Independence, Preventing Crisis’, by the All Party Parliamentary Groups on Disability and Local Government, following their inquiry into adult social care reform for working age disabled people, for which I provided both oral and written evidence.
Although these topics don’t at first sight appear to be strongly linked, the common thread is that both the under-occupancy penalty (the ‘bedroom tax’) and the current state of adult social care exemplify a ruthless focus on the cost of enabling disabled people to live independently and have a reasonable quality of life, free from unnecessary hardship and stress. Disabled people are not asking to live in the lap of luxury, but we do expect opportunities broadly equal to those open to our non-disabled peers. In recent years, as the disability movement has matured and Governments have sought to incorporate the concepts of the social model of disability and independent living into policy-making, equality of opportunity was at least visible on the horizon, if not yet in reality. But the longer we live under the shadow of austerity, the more distant that equality appears.
Another common factor linking these two policy areas is that they both demonstrate that Governments find it easier to justify the cost of supporting older people than of working age disabled people. Older people’s benefits have not been touched; despite the fact that many older people ‘under-occupy’ their homes, housing benefit claimants above state pension age are not subject to the under-occupancy penalty. And when the Government – or the media – discuss social care, they give the impression that only older people need support; they very rarely mention the one-third of social care service users who are of working age.
Against this backdrop, the new report, ‘Promoting Independence, Preventing Crisis’, is a breath of fresh air; it clearly bears the hallmark of an inquiry that has been led, at least in part, by those who understand and believe in independent living and that social care support should help to achieve equality of opportunity for disabled people. The report is particularly timely, coming as it does as Parliament commences its scrutiny of the Care and Support Bill. It makes concrete recommendations for the needs and aspirations of working age disabled people to be reflected in legislation, including a recommendation to extend the well-being principle in the Bill to include a right to independent living as described in Articles 19, 20 and 21 of the United Nations Convention on the Rights of Persons with Disabilities.
There are some gems in the report which, as its title makes clear, recommends that support is focused on preventing needs from escalating and on enabling disabled people to live independently. Recommendations designed to focus support on independent living include improving the Care and Support Bill’s provision for the ‘portability’ of support packages, to ensure disabled people can move to another area without losing vital support, and increasing the range of funding streams in an extended Right to Control pilot. Another key recommendation is that the proposed national eligibility criteria should be set at a lower level of need than is currently set by the majority of local authorities, to ensure that support is preventative rather than crisis-driven.
One of the key messages of the report is that there should be greater integration of health and social care services and that £2bn should be moved from the NHS to social care. Whilst this could produce better co-ordination and a more holistic service, I’m concerned there’s a danger of the independent living ethos exemplified in the best social care departments being undermined by the more paternalist approach of the NHS – and I said as much in my oral evidence to the inquiry. But I also suggested there should be more integration between social care and housing, and it seems that others are starting to agree.
Whilst ‘Promoting Independence, Preventing Crisis’ is a good report, more ambitious in its aim to support independent living than I dared to expect, its impact is likely to be limited. The Government may not agree with its recommendations in relation to the Care and Support Bill. The Treasury may well fail to agree sufficient funding for independent living to become a reality. Above all, we all know that independent living cannot be achieved without adequate funding of the whole range of support needed by disabled people. Welfare policies such as the bedroom tax and the restrictive criteria for PIP, alongside other cost-saving measures such as reducing funding for the Equality and Human Rights Commission, continue to give the message that saving money is more important than the well-being of disabled people. As a society, we must decide where our priorities lie.