by Kirstein Rummery
Social policy has always distinguished between the ‘deserving’ and ‘undeserving’ in responses to need. When the post-war welfare settlement was decided, the battle lines against Beveridge’s 5 Evils of want, ignorance, squalor, disease and idleness were drawn with a vision of a ‘land fit for heroes’ to come home to. Injured servicemen and civilians were to have their sacrifice rewarded by the substantial provision of housing, work, education and health services, with a safety net of benefits for those unable to work. Disabled war heroes fell squarely on the ‘deserving’ side. Quotas were introduced to encourage larger workplaces to ensure that at least 3 per cent of their workforce were disabled, healthcare was made universal and accessible on the basis of need rather than the ability to pay, and charitable institutions providing long-term care for disabled people without family support were brought within statutory welfare.
However, as values and expectations changed and healthcare improved, more and more disabled people found themselves trapped at the mercy of the institutions designed to provide care. Along with the changes imposed by the 1970s oil crisis, the 1980s saw the rise of a disabled people’s social and political movement. Inspired by the Civil Rights movements against racism and sexism, disabled people began to agitate for the removal of segregation and oppression through special education, institutional care, sheltered employment and residual benefits.
Community care and independent living
Sometimes, policy cycles come together in fortuitous ways. Alongside the bottom-up rise of a politicised disabled people’s movement came a top-down concern with reducing the role of the state and capping the rise of expenditure on residential care. Additionally, evidence from social work pilots in Kent that provided care services in the community showed that it could be more cost-effective than residential and nursing care. The 1990 NHS and Community Care Act was heralded as an opportunity to allow disabled people to be empowered and live independently. Services were to be provided in the community using a range of providers: a mixed market of care.
Of course, community care was fraught with tensions. Feminist researchers pointed out that care in the community meant care by the community, and that this meant, overwhelmingly, that women would provide care. Social work researchers pointed out the balancing act of rationing access to resources whilst trying to support and empower people was impossible. Disability activists pointed out that the very idea of ‘care’ was disempowering for disabled people and the practice of social workers acting as gatekeepers made it impossible for disabled people to be full citizens. It became clear that commodifying care wasn’t working.
Commodifying independence: direct payments and self-directed support
As with the initial community care pilots, direct payments for disabled people started small. A number of English local authorities circumvented the rules preventing directly paying disabled people by setting up third-party trusts and enabling people to purchase their own care and support.
These were hugely successful. Initial evidence showed that the services met people’s needs better, were more responsive and flexible, and were more cost-effective than statutory social care. Disabled people welcomed the opportunity to be in control and local authorities welcomed the opportunity to save money. With increasing pressures on social care spending leading to the forced integration of health and social care and increased rationing of services, another seemingly fortuitous bringing together of top-down and bottom-up policy developments seemed about to take off.
However, the crisis in funding had a huge impact on what happened next. Social care budgets began to be effectively cut long before the 2008 economic and financial crisis led to austerity. The development of direct payments services were seen by many local authorities as an opportunity to further cut spending: rationing by need (by making payments only available to those with ‘critical’ or ‘high’ needs) and by design (by making the system of payments so difficult to use it effectively put people off).
Whilst the budget for self-directed support and direct payments continues to rise, the actual care and support disabled people receive — whether that is measured in time or tasks — is falling. Effectively, the state has outsourced the responsibility for rationing resources onto disabled people. Faced with reduced payments and rising service charges, increasingly, disabled people are finding it difficult to purchase the care and support they need.
A policy change that could have been marked by the significant empowerment of disabled people has instead turned into another way of reducing state support. The potential for direct payments as envisaged by disabled people themselves is huge. Our research uncovered ways in which creative and person-centred approaches were being used to enable disabled people to parent, to work, to take care of each other, to volunteer — to participate in society. But current ideologies and practices in welfare mitigate against this. Government can’t commodify independence unless it is willing to pay properly for it. All reduced budgets will achieve is placing disabled people in further precarious and vulnerable situations without empowering them at all.
Kirstein Rummery is Professor of Social Policy at the University of Stirling. She tweets @KirsteinRummery.