Missed chance for meaningful social care funding reform

I’m a novelist, podcaster and disability rights campaigner. I’m 34 years old, I have Spinal Muscular Atrophy (SMA), and I use a powerchair. I live with my mum and stepdad in the village of St Nicholas-at-Wade, Kent. 

Many disabled people receive social care support from their local authority, and many of these people currently contribute towards the care they need – using money from benefits and whatever savings they have. I’m one of them. I spend just over £10.50 a week (approximately £45.50 per month), which I use for all my personal care.

Essentially, it’s like paying for Netflix every single week. I pay a subscription to go to the toilet or have the luxury of being dressed or washed. 

A chance missed

The government passed the Health and Care Act 2022 at the end of April, with social care changes in England to begin in October 2023. As a young disabled person, I’m far from happy with the government’s changes to social care.

The government had the chance to remove social care charges for adults under 40. This was a policy put forward by peers in the House of Lords. They recognised that the charging system is unfair as younger people have not had as much chance to build up savings as older people. This Lords amendment gave the government a historic opportunity to help young people. 

However, despite the efforts of fantastic peers and a coalition of charities, including Leonard Cheshire, the government persuaded enough MPs to reject the amendment. So the idea of no care charges for those under 40 is off the table for now. 

Many people will still contribute to social costs

Under the new system, fewer people will be paying all of their care costs: only people with assets over £100,000 will pay for the entirety of their care. Crucially, lots of people will still have to pay something towards their social care.

People will still make contributions to their care if they have savings or assets over £20,000 (£20,000 is the new lower capital limit and is only a slight rise from the current £14,250). 

I can’t save for my future

So if I build up more in savings, I could still be hit with care charges under the new system. As disabled campaigner Baroness Jane Campbell says, this is a tax on aspiration. I don’t want to be dependent on my family forever. I want to buy my own house and live independently with my support workers. But this feels like a pipedream. 

I really want to have the freedom of my own place and make that step in my life and increase my independence. I feel like I won’t have that option while I’m paying for care. My family can’t buy a house for me, and it’s almost impossible to get on the social housing waiting list. It’s down to me. Not having care charges would be life-changing for me and many younger disabled adults.

Social care is about younger disabled people too

For a long time, the government has demonstrated a limited perspective on who uses social care. It’s not just older people; it’s younger, working-age disabled people. And it’s not just about people moving out of a property they own and into residential care. It’s people of all ages who have support from carers or personal assistants (PAs), at home and in various settings. The Prime Minister seemed unaware of this from the start.

 

 In Boris Johnson’s first speech as Prime Minister in July 2019, he tellingly talks about social care only in terms of helping older people. He also frames the debate as simply about residential care and people having to sell their houses. This is an issue that certainly won’t be entirely fixed by the Health and Care Act 2022. Mr Johnson famously said:

“My job is to protect you or your parents or grandparents from the fear of having to sell your home to pay for the costs of care. So I am announcing now – on the steps of Downing Street – that we will fix the crisis in social care once and for all with a clear plan we have prepared to give every older person the dignity and security they deserve.”

A commendable ambition, but what about those of us unable to get a home to start with?

Working-age disabled adults are still trapped

For working-age people drawing on social care, this policy limits the hope for many to save for a house in the first place. In the House of Lords, several peers, including Baroness Campbell, Baroness Wheeler, Baroness Bull and Baroness Brinton, are keen to highlight the needs of working-age disabled adults. Speaking in a debate just before social care legislation became law, Baroness Wheeler said:

“The government’s proposals will mean they remain trapped in poverty.” 

 

There’s lots of talk in the government about levelling up. But the latest social care legislation doesn’t level up for disabled people. It doesn’t allow them to keep savings. And if you aspire to have a good job and be successful, you might well still have to use what you’ve saved to pay for someone to help you use the bathroom. That’s crazy.

A social care cap that’s not fit for purpose

The government also introduced a woefully inadequate cap on social care costs that does not help working-age disabled adults – who will be paying for many years before they reach it. The government’s cap on an individual’s social care costs – the total amount someone will pay for care from start to end – is set at £86,000. Plans for social care were first unveiled in September 2021, and the cap was loudly trumpeted. In November, the government announced, as quietly as possible, a cap that was now hastily redesigned and much less generous.

Initially, the social care cap could be reached quicker: your own payments + local authority payments would count towards it. Now, the social care cap will be reached much slower, if at all: only your own payments will count towards it.

So the government’s new cap will be of little benefit to younger adults, who may pay a smaller amount over a longer period of time. Research by the charity Sense shows that many working-age disabled adults – a staggering 80% - will never reach the cap on care costs. 

 

Paying for care feels like having a debt hanging over you for your whole life. If you’re someone who is disabled from birth or from a young age, you may well spend your entire adult life paying back that debt.

Sustainably funded options exist and would benefit the economy

The government points out that reforming social care is difficult, and that successive governments have ducked the issue. However, the government’s claim that their plan is the best way to ‘fix’ social care is not credible. We already had fairer proposals from economist Andrew Dilnot and his Dilnot Commission several years ago. The Dilnot reforms were put into the Care Act 2014 but never switched on. Dilnot proposed a more generous cap, and proposed no charges for under-40s. 

 

The government had rejected the Dilnot proposals for reasons of cost. However, sustainably funded social care would benefit both disabled people and the wider economy. Modelling produced by Frontier Economics for Leonard Cheshire shows that investing in sustainably funded social care can generate an additional £6-£20 billion in annual income across the UK.

Silver linings… but more action needed

The social care system required urgent reform, but the Health and Care Act 2022 falls well short of what’s needed, and there’s a clear sense of a missed opportunity. 

There are some silver linings. Thanks to the work of some politicians and charities, there is now more discussion in Parliament of the needs of working-age disabled adults. There is momentum for future change. 

Ultimately there is no question that if we want to see a fairer care system, we need far more action for working-age disabled adults.