Making the social care cap work for disabled people

The Health and Care Bill sets out a pretty significant change to the Government’s proposed plans to reform social care.

The Health and Social Care Act. The Health and Social Care Levy Act. The Care Act…

The British political and legal system is many things, but simple is not one of them. None of the Acts above should be confused with what this blog is actually about. In fact, you can forget about the first two. I probably shouldn’t have mentioned them.

What’s relevant to us now is the Health and Care Bill, which is currently going through the House of Lords. While a lot of the Health and Care Bill focuses on technical changes to the way that the NHS works, it also sets out a pretty significant change to the Government’s proposed plans to reform social care.

The state of social care

Before we take a look at how the Health and Care Bill changes the government’s plans, it’s worth exploring what the social care system in England is like at the moment*. As things stand, only those with over £20,000 in capital are required to pay their care costs in full – this could be either savings or assets. Those with savings of under £14,250 will have their care covered in full by the local authority, while anyone with savings over that amount needing to contribute to the care cost.

The level of that contribution will depend on someone’s age and living circumstances, but it could be a significant proportion of someone’s income. A single working-age adult in this situation, for example, would be required to contribute as much of the cost of their care as possible from their own pocket, with the state only stepping in to cover the remaining costs when that contribution leaves them with £91.40 a week in income.

Last September, the Government set out a plan to cap the cost of care at £86,000 across someone’s life.  At that point, the state would step in to cover the remaining costs. It also planned to make the means test for state support more generous, meaning fewer people would pay for care at all.

A cap on care costs isn’t a new idea. Back in 2011, a panel of experts on social care published the Dilnot Report, which proposed a series of measures to fund social care in the long term, including through a cap on care costs.

The Government accepted the proposal for a cap on care costs, using the 2014 Care Act to set out the legal basis for the cap, including what would count towards it. Under those provisions, the cap would not only cover what someone spends on care themselves, but the amount the state contributes towards that cost. Although the cap was never implemented, the provisions for it remains on the statute books.

We’d assumed this was how the Government’s current plan for a cap on care costs would work. That would mean that someone who pays for part, but not all, of their care costs could meet the cap without spending £86,000 out of their own pocket.

Changing the Care Act

We were wrong. In November, the Government announced that it would use the Health and Care Bill to change the Care Act’s provisions, meaning that the care cap would not count contributions from the state. As a result, someone would have to spend £86,000 of their own money before reaching the cap.

What would this mean for people with complex disabilities?

Sense recently carried out research to establish exactly how the cap on care costs would work for people with complex disabilities, using a range of personas with typical care needs to assess the way the proposals would affect them. We found that the change to the Care Act could add decades to the amount of time it would take to meet the cap.

In fact, in the case of one persona, it would add decades to the amount of time it would take them to reach the cap.

The cap on care costs was never going to fix social care. It was never going to solve the fact that many people with complex disabilities don’t receive the right care, if they receive it all.

That said, the cap would have helped some people with complex disabilities, particularly those with high levels of care needs. But the change to the Care Act would mean that it will help far fewer people.

It’s not over yet

Fortunately, it’s not a done deal. Sense has worked with a coalition of other charities representing working-age disabled people to convince Peers to back an amendment that would reject the change to the Care Act.   

This same coalition also tabled an amendment that would make a more significant difference to the lives of people with complex disabilities. This amendment would introduce a ‘zero cap’, with those who develop a care need before the age of 40 being treated as if they had already met the cap. This would mean that the state would cover all their care costs.

This wouldn’t change the fact that our underfunded social care system often doesn’t give people the right care. But it would mean that far more people with complex disabilities would benefit from the cap on social care costs. That is why we’ll be working hard to convince as many Peers as possible to back our amendments.

* Social care is devolved in Wales, Scotland and Northern Ireland, so these changes will not apply there.

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This content was last reviewed in April 2022. We’ll review it again next year.