“Imagine you need some support to use the toilet and knowing that every time you're going, you are creating more debt that they’re going to chase you for.” That’s the reality, says Rick Burgess, for the 60,000 Disabled people local authorities brought debt proceedings against last year.
Because, for many Disabled people in the UK, social care is now a paid-for service, forcing us to pay a tax on impairment. Often, we are chased and hounded to pay for even the most basic support.
And this support, explains Burgess, a co-founder of Manchester Disabled People Against Cuts, typically lacks “the essential part of independent living” – the principle that Disabled people are entitled to the same control over choices in their lives as anyone else.
The situation is only likely to worsen in years to come. The average UK council faces a £33m deficit by 2025-26, a rise of 60% from £20m two years ago, according to a BBC investigation. The country’s largest union, Unison, has warned that local authorities might not be able to offer Disabled people the “legal minimum of care” as soon as next year.
Care in the UK is based on a ‘medical model’ that frames the body or mind of a Disabled person as something that needs to be ‘fixed’. It suggests that ‘typical abilities’ are superior and that physical or mental impairments should be ‘cured’ with the help of an outside force.
This model means officials at local authorities in search of quick savings will feel able to resort to regressive, ableist policies that place us into residential care where they can meet our ‘needs’ and save costs, without regard to our independence or choice.
After a decade of austerity policies, we are already in dangerous territory. Grim research by the Bureau of Investigative Journalism found that deaths of people receiving social care support in their homes increased in England by nearly 50% between April 2020 and March 2021.
Just this week, the Homecare Association, a trade body representing homecare providers in the UK, reported that half of the 225 homecare agencies it surveyed had experienced a 25% fall in the number of hours of care that councils commissioned them to provide. This is despite demand for care growing, with the latest census showing that 1.2 million people aged 10 to 24 in England and Wales now declare themselves Disabled – more than double the number a decade earlier. A third of respondents to Homecare’s questions said they thought the decrease in commissioned hours was due to councils’ squeezed budgets.
We want a system that enables us to live independently, rather than generating a list of ‘care tasks’ our local authority can charge us for
Mark Williams and Val Stanfield from grassroots organisation Bristol Reclaiming Independent Living have experienced the system for decades, and believe that the decline in care support began with the closure of the Independent Living Fund (ILF) in 2015.
The ILF was a central fund administered by the government and its closure was a symbolic marker of the deep cuts throughout the 2010s, which led local authorities to reduce the services they provide.
As writer and campaigner Ellen Clifford put it: “Investment in social care to the extent that it will be able to uphold the rights of Deaf and Disabled people goes against the logic of neoliberal politics.”
Now, the crisis is deepening; more and more councils will go bankrupt, cutting our support in last-ditch attempts to preserve solvency. And with the opposition seemingly content to maintain this status quo, it's becoming clearer that serious political organising around the fight for independent living will be needed.
Disabled people are already fearful for our futures. “We’re really worried about it,” Williams told me, as Bristol City Council launched a new consultation on a ‘Fair and Affordable’ care policy, which could force Disabled people into residential homes against their will with, he said, “catastrophic implications for [their] independence”.
The ability of councils to make these widespread changes, with huge implications for Disabled people’s independence, is one of the larger failures of the current discourse surrounding care.
As Caroline Collier, CEO of Inclusion Barnet, a group that found itself campaigning against a ‘Fair and Affordable’ care policy introduced in Barnet in 2018 explained: “People who aren’t steeped in the disability movement don’t necessarily realise what a symbolic step backwards it was.”
We see disability through the ‘social model’, where being Disabled is a political term that describes our experience of marginalisation, not individual impairments. The social model allows us to come together to fight back against a world that we can’t navigate safely without care and support. This model helps us understand that a flourishing social care system should give us access to choices and the freedom to live independently.
We want a system that enables us to live independently, rather than generating a list of ‘care tasks’ our local authority can charge us for. The struggle for a better, more equal system should unify us all to talk about intersectionality and disability justice alongside the crucial demands for fair conditions for both paid and unpaid carers, wholesale changes to the gendered imbalance of care responsibilities, and the need to tackle the looming climate crisis, which will affect our capacity to care for one another.
The Disabled community is already organising, building power and fighting back. As Clifford put it: “We spend our whole lives fighting for the support and entitlements we need to survive.”
And now it's time for our allies to get on board. Our community is organising around the need for independence and care transformation as explicit political goals through our Disabled People's Manifesto, co-written by Disabled People’s Organisations nationwide, and the National Independent Living Service platform, designed by our allies at Reclaiming Our Futures Alliance.
Together, we can build space for ourselves and our ideas, and integrate the energy, dedication, and skills of those who draw on care, to create a new future together. We all want the right support when we need it. We must stop seeing access to it as a luxury; instead, together, we can rethink what care means and create a system of support that works for everyone.
