For much of the past year, social care has been in the spotlight like never before. Front page stories about the lack of personal protective equipment (PPE) to the horrifying death rates in care homes have increased pressure on the government to follow through on their promise to fix social care once and for all. Yet things appear to be getting worse for many who rely on social care.

At the last budget, social care was not mentioned once. And despite claims of big spending, beneath the surface the government announced cuts to the tune of £4bn a year to non-protected departments, adding to the £11bn a year set out last November. Instead of announcing additional support that is desperately needed for adult social care, this vital piece of community support will now need to be funded out of an even smaller local government pot.

Recent research by the campaign group Social Care Future, disability equality organisation Inclusion London and the Be Human movement has shown how basic support is being cut and new charges introduced as local authorities attempt to save money. These charges are forcing people to ​‘stop care they need or make difficult choices for financial reasons’. With the state withdrawing, the cost of paying for care is leaving some to go without or to cope without enough money for other basic necessities. Some of those included in the research cited having to choose between paying for care or paying for food, clothes or heating.

Social care according to need not ability to pay

Many people assume social care is part of the NHS, so when we, or someone close to us, starts to need support, we’re often shocked to find it’s not. Research by the Health Foundation found that just under half of the public think care is free at the point of need.

Unlike NHS services, access to publicly funded social care is heavily restricted. Some people end up paying huge sums of money for their care, but many have to rely on family members or simply go without. Public support is limited to those with the greatest needs and least means, and the government’s response during Covid-19 appears to be making things worse.

Ultimately, the system is designed to let the cost burden of needing care and support fall on individuals. This creates a huge economic risk for people with disabilities and health conditions, exacerbating poverty and inequality. It is also a source of potential economic insecurity for all of us: we might, at any point in our lives, require social care, yet find that it is unavailable or unaffordable.

If we pooled these risks at a societal level, spreading the costs of social care so that those with the broadest shoulders carry the most weight, we could guarantee access to social care in the same way that we guarantee access to healthcare. There is a broad public consensus, extending across the political spectrum, that we need to increase funding for social care and extend the principles of the NHS into social care so that it is free at the point of need.

A number of questions follow. One is the question of cost: how much would it cost to develop a universal social care offer and how could this cost be funded? The parallel question, which is perhaps even more important, is: what should a universal social care offer actually include?

Universalism of what?

A popular proposal – gaining support from across party and political lines – is for free personal care, which involves assistance with certain aspects of daily living, like getting out of bed, getting washed and dressed and support going to the toilet. In Scotland personal care has been free for people over the age of 65 since 2002. Last year it was made free for those under the age of 65 too.

This is a progressive policy which would provide people with an entitlement to some essential support free at the point of use. But lessons from Scotland suggest two related problems with this approach that need to be learned from and built on: it’s too restrictive and too prescriptive.

As we have argued elsewhere, reform of the social care system needs to match the high aspirations previously set for social care in the Care Act and by calls from the disability rights movement for independent living, with a vision for care based on wellbeing, rights and capabilities at the centre. It needs to, in the words of the Act, ​‘help people to achieve the outcomes that matter to them in their life’.

Yet proposals for free personal care seem to be focused only on the basics of survival and physical functioning. And they seem to do so by defining, from above, the tasks that social care should deliver. For example, you can get support for personal hygiene like bathing and hair washing, as well as continence management e.g. toileting and a bed change. But you will be charged for help with housework, laundry, and services outside of the home. The list of tasks is restrictive, leaving out much of the support that people want and need. And by setting tasks to be delivered from above, it risks making the relationship between care giver and those supported transactional, leaving little room for the autonomy of either party.

As Frances Ryan says, ​‘anyone who currently needs care or who has battled to get it for a loved one will know, this is the sort of policy that will transform lives’. However, ​‘we must also ensure the conversation doesn’t just stop at personal care. It’s a sign of how bad social care has become that large numbers of people don’t even have help with their basic needs. But life is about more than going to the toilet’.

If a more expansive vision for social care – based on supporting people to thrive, not just to survive — is to be made real, it needs to be at the centre of a universal offer. It also means finding ways to set parameters around the offer, while being flexible so that people can direct their own support. For this to happen, the government must make social care a priority and invest substantially more in it. A new guarantee along these lines would provide us all with the security of knowing that, if and when we need it, good care and support is available.