Imagine if I told you that every day you had to pay to use the loo in your own home. Or pay to shower. To put clothes on.
Sounds ridiculous, doesn’t it? Unfair? Well, this is my life – paying to get the support I need just to be able to pee in my own bathroom.
I have Spinal Muscular Atrophy, a genetic disability that results in very weak muscles. I’m unable to stand and I’ve used an electric wheelchair since I was three years old.
Because I can’t do basic routines like washing and dressing myself, or going to the loo, I have a small team of five carers who take it in turns to come into my home every day and help me with things many people take for granted.
They help me get ready for a day at my desk where I work as a writer, or to go out with my friends, and assist me with making food and drink. It’s an essential part of my day-to-day life, and without it, I’d be left in bed unable to move. With it, I’m able to live my life as independently as possible.
But this life-changing support doesn’t come for free and it’s a constant fight to get the care I need. A fight that’s still ongoing.
This week, Boris Johnson announced his plan to ‘fix’ social care, but the controversial rise of National Insurance payments don’t go anywhere near far enough to mend this broken system.
Only £5.3billion of the £12billion promised will actually go towards social care in the first three years, with the majority of the funding going to the NHS. The government has been warned by the Institute for Fiscal Studies that in reality, the NHS backlog might leave nothing left for social care.
This is a big worry. Research has found that in order to provide adequate support and improve the care staff shortages, social care needs an immediate cash injection of up to £12.2billion. The lack of money being spent suggests to me that the prime minister isn’t taking the social care crisis seriously enough.
The NHS is an institution we’re all proud of and grateful for, but social care isn’t given the same priority or respect. Why not – when it’s a lifeline for hundreds of thousands of us?
While I do get help to pay for my own care through my local authority, I have to make a contribution to costs. I pay around £30 a month, but this usually increases yearly.
In England, what you have to pay varies depending on where you live. How much the local council agrees to pay can vary massively, too.
Disabled people like me have to go through a financial assessment, which looks at savings and income from benefits – but not wages – and calculates how much we have to pay towards our own care.
Currently, if your savings are more than £23,250, then you may have to cover the costs entirely by yourself. If they’re more than £14,250, you will likely have to contribute financially.
This system doesn’t allow me the opportunity to hold savings and plan for the future; any money I put aside would have to be used to pay for care.
I dream of being able to move out of my parents’ house and live in my own home, but without being able to save for a deposit, this is impossible.
Boris Johnson’s new changes to care contributions might reduce the amount I have to contribute towards my care, but it still doesn’t solve the biggest issues in the system.
Even though I have been receiving social care since I was 18, the level of support I’ve been assigned still doesn’t meet my needs. Currently, I don’t have any help at night time, to get into bed or turn over in bed. Thankfully, I live with my mum and she can help but not everyone is that lucky.
Research has found that a fifth of adults have gone without meals because they couldn’t access the assistance they needed, and a third have not been able to leave the house due to a lack of appropriate care.
At least 1.7million more adults will need social care in the next 15 years but government cuts mean that councils have even less to spend on funding it than they did in 2010.
I have constant anxiety about whether I can afford adequate care hours, especially on bank holidays or weekends when private companies charge more per hour for the same support.
It means thinking about whether I should skip showers or go to the toilet fewer times a day just to save money or stretch my allowance from social services. It means pressure on my mental health and worrying about what my quality of life will be in the future.
I rely so much on my mum to fill in the gaps, but I worry constantly that she’s getting older and one day won’t be able to help. What will happen to me if she’s suddenly incapacitated? Like others in the same situation, it feels as if my local council takes my family support for granted – with no plan for my future if they become unable to look after me. I stress about this every single day.
The entire social care system needs an overhaul – something Boris Johnson promised to do in 2019 just before he came into power. He promised to fix the crisis ‘once and for all’ but his recent announcements are a pitiful effort, far from the desperate reform needed.
Campaigners have long been arguing for an NHS-style system of universal, free social care. This would mean it’s there for all of us if and when we need it.
I’ve lost hope that the government has any understanding of how vital social care is for the wellbeing and independence of thousands of disabled people. Not only does the funding increase fail to meet the estimated level needed, Boris Johnson didn’t put forward a plan to solve the other issues in the system.
The rise in National Insurance contributions will also hit minimum wage workers hard – the kinds of people doing the undervalued care work the government claims it wants to improve.
There’s already a huge shortage of the amazing hard-working people who are my lifeline and who are often on zero-hour contracts for a low wage doing skilled and difficult work.
There’s still a lack of understanding that social care is more than just older people in care homes and should be there for young, working age people like me to enable our independence.
Disabled people have the right to live as independently as we choose, but the reality of social care in the UK means many of us don’t have this option and it doesn’t look like that’s changing for me any time soon.
The government needs to make social care a priority, not an afterthought. It is as fundamental to society as the NHS but until we see it like that, my daily life and my future will be a constant worry.
Maybe one day I can save my money for my dream home, instead of worrying about paying to use my own toilet.
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