'For all the progress our country has made, largely under Labour governments, there are still too many disabled people of all ages who are locked out of everyday life'
Ben Cooper (@BenCooper1995) is a senior researcher at the Fabian Society
Disabled people want to “get on with living their own lives as normally as they can in their own homes amongst their own family” and to “have the opportunity of contributing to … society as fully as their abilities allow”. These are the words of Labour MP Alf Morris, spoken when introducing the Chronically Sick and Disabled Persons Act in 1969.
This was the first legislation in the world that recognised the rights of disabled people, and his words reflect an ambition and a challenge as relevant today, as they were more than 50 years ago.
For all the progress our country has made, largely under Labour governments, there are still too many disabled people of all ages who are locked out of everyday life, unable to live how they wish, and often trapped without the support they need.
Our current social care system is a major part of the problem. Around a third of people receiving care in England are disabled working-age adults – and many older people are disabled. At its best, social care can provide disabled people with the help and support they need to live, learn, work, and participate in life on an equal basis with others. It can empower disabled people, and help tear down the barriers they face.
But too often, especially in our current chronically underfunded system, that is not the case. More than a decade of austerity has left many disabled people with low-quality care, or without any care at all, for years. In the meantime, demand has been rising: the Kings Fund estimates that requests from working-age disabled adults to local authorities for support have increased by 15 per cent since 2015/16. Yet the numbers of disabled people receiving care has fallen, resulting in increasing levels of unmet need.
Inadequate social care support can have a devastating impact on disabled people’s lives. Polling of working-age disabled adults by Leonard Cheshire found that 45 per cent of those who received inadequate support had been prevented from working at all, or as much as they would like; 41 per cent had been prevented from visiting family and friends; and 36 per cent had been prevented from leaving their own house at all.
And the number of working-age disabled people unable to access the support they need is likely to get worse. The Department of Health and Social Care has estimated that around 29 per cent more working-age disabled adults will require care in 2038 compared to 2018. A system that cannot meet current levels of need and is unable to deliver dignity and independence to every person who seeks support, is obviously not going to be able to cope with growing future demand.
Despite the significant social care challenge facing working-age disabled adults, they are all too often absent from the public debate. How we care for older people is, of course, incredibly important, but we need to have a similar level of focus on disabled people of all ages and the support they receive.
The government’s recent plan, with a cap on care costs, fails to support disabled adults who need complex care or who need care for a very long time – particularly if they are of working-age. They will continue to face life-long catastrophic care costs – despite having fewer savings and lower incomes.
The government has also failed to act to retain social care staff, which will impact on disabled adults. Carers often leave the sector for better paid opportunities elsewhere – and the high turnover of staff makes it difficult to provide high-quality care. This is particularly a problem for those with complex disabilities, as it takes longer to train up new staff to support them and they can go without the continuity of care that can be so important for wellbeing.
Disabled people deserve better. We need to fund social care properly, which will go a long way towards repairing the broken system. But we also need to look at wider reforms to improve social care provision for disabled over the long-term – and ensure no one is locked out of everyday life.
Disabled people deserve a National Care Service that ensures everyone who needs care can access it, and that supports staff with better pay, terms and conditions so they can focus on supporting disabled people. Any National Care Service should empower disabled people, placing them in greater control over the support they receive. This requires diversity in provision of care and support, so disabled people can choose what works best for them – whether that is directly employing assistants, being part of a social care co-op, or utilising local authority commissioned services.
We need to be realistic: transforming social care will take time. But we can start now to improve lives – and we must listen to, and work with, disabled people every step of the way.
The ambition of a National Care Service should be no less than to guarantee every disabled person the support they need to live well. It would be a big step toward meeting Alf Morris’ challenge over 50 years ago: every disabled person able to live how they want, in their own homes independently or with their family, and to contribute to society as fully as their abilities allow.
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