Disabled People’s Ambitions are Crushed by Savings Caps on Social Care

Often when social care is talked about in the media and by politicians, they portray an image of care homes, residents near the end of their life, elderly people being made cups of tea. But what about those of us who need care from a young age? Who need social care to support us with work, to meet up with friends, to travel, to party? Where are we in this out-dated narrative, the young and aspiring?

The truth is, we’re forgotten about, and the system penalises us too.

Carers or PAs are an essential part of my everyday life. They support me with washing, dressing, using the toilet and preparing meals – and I’m not alone. 

A quarter of a million working aged people also use social care. Unlike the NHS, social care is not free at the point of use – despite many campaigners arguing it should be. While local authorities do help fund care needs, you have to undergo regular financial assessments to determine if you are entitled to any financial support – and this varies depending on where you live. 

The current system in England means anyone with more than £23,500 in the bank has to pay for the entirety of their care. If you hold more than £14,250 in savings, you must contribute to costs. With the typical cost of care amounting to £20 an hour, that money is quickly eaten up. 

Essentially, these caps mean you can forget about saving up for a deposit, a car, or a secure future. Hold any significant savings, and instead you’ll be using that money to go to the loo in your own home. 

This is a financial burden weighing on the shoulders of many disabled people and yet it’s a subject rarely discussed in the media. When friends or family learn I’m paying out of my own pocket for these basic needs, they’re shocked and horrified.

There are countless stories about older people forced to sell their family home to fund the high costs of care home – but what about young and ambitious disabled people who don’t even get the opportunity to strive for success or buy a home when their very aspiration has a financial cap? 

In the Autumn of 2020, after several years of writing my debut novel, I finally heard the news I’d been waiting for. I’d been offered a book deal! My dreams of being a published author were coming true. The Seawomen will be in bookshops in June 2022.

But while many people would be overjoyed at this news, career success and financial achievement for disabled social care users comes with a catch. And that was on my mind too.

Like every author, I have dreams of becoming a bestseller, winning awards, even getting a glossy TV adaptation of my novel. But hanging over me like a dark cloud is that continuous burden – if I make more money, if I become more successful, the money I make will be taken away from me and I’ll have to use it to pay for basic daily needs. 

What kind of drive to succeed is that, when unlike my non-disabled peers I’m penalised, my ambition capped, just because I need care, something I cannot live without? This isn’t a dilemma for a non-disabled person when they progress in their career, so why should it be for disabled people?

Currently, I live at home with my parents but I long to move out and live independently with the support of carers like I did when I was at university. But with the current restrictions, any hope of trying to build a secure future by saving for a deposit is impossible.

Articles giving outdated and patronising tips to millennials about cancelling Netflix and giving up avocado toast to boost their savings don’t even consider that disabled people could give up every luxury in their life, only to have those savings stripped from them.

Even the government’s proposed changes in their Health and Social Care bill, despite ministers claiming no one will be worse off, means disabled people with savings over £20,000 will have to contribute to costs until they reach a threshold of £80,000. 

For many, this almost acts like a debt, one that might never be paid off in our lifetime. This is in addition to the extra costs that disabled people face, an estimated £583 a month according to research by Scope, and with rising fuel and food costs, disabled people are penalised at every turn. 

Until social care charges and savings caps are abolished, disabled people like me won’t ever have the same opportunities as our non-disabled peers. Using social care is not a choice or a luxury, it’s an expensive essential that I wish I didn’t need. The hundreds of pounds I spend on care every year, I’d much rather be saving for my future, or use it to enjoy life. 

It’s ironic to hear the government talk about their key policy of “Levelling-Up”, reducing inequality and giving everyone the opportunity to flourish, when disabled people like me, continue to have our aspirations capped. 

How can our lives ever be equal or “levelled up” when a better paid job, a promotion, or even an exciting new book deal could mean a bigger financial burden on our lives to pay for care we cannot live or work without? 

Disabled people deserve the same opportunities in life as everyone else, but until social care is free at the point of use, we are trapped in this unfair and restrictive system.

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