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May 28, 2021

A lifetime of being cared for – a Spark! members personal account

A member of Spark! shares their personal account of the current care system in the UK and the fears they have for the future trying to navigate a system that seems to be stacked against disabled people.


A lifetime of being cared for

I’ve been disabled my entire life and have received care my entire life; predominantly from my mum. We expect children to be ‘cared for’ by a parental figure but when you’re disabled this takes on another dimension which can be both positive and negative and is a steep learning curve for the person doing the caring. Ask me back in my teen years and I would have said that I hated having my mum as my carer, but now that I am an adult, I dread the day that she can no-longer fulfil this role.

Along-side this I’ve had carers at school on a full-time one to one basis. During my undergraduate degree Mum was my carer, and then for post-graduate studies I’ve had care provided by the university and care provided by the local authority. For a few years I had care provided by my then boyfriend. Now I have care provided by my mum (at home) and by the Access to Work scheme through an agency (at work). There will be no stage of my life where I won’t need some level of care, and as I age, I know this will need for support will increase.

Some people express the view that simply needing care means that your quality of life is automatically poor, and that they would rather be dead than have to rely on other people (members of my own family have said this to me). I get that everyone is entitled to their opinions but for me these are ridiculous things to think and result in people not accessing the support they need. I think it’s also part of why all caring roles (including ‘just’ being a parent) are devalued. I’m not saying that needing carers is easy, but for me it’s not the physical acts of having even intimate care needs fulfilled that are the issue and my quality of life, overall, is vastly improved with my support needs being fulfilled. It is almost always the systems that you have to wade through to access the care you need that are the most stressful, unsupportive, terrifying and often costly. I could write for hours about many experiences I’ve had whilst being cared for; good and bad, but I want to talk to you about what it feels like to know that your quality of life depends on being able to access the support you need (physically, mentally and economically) and what it’s like to feel that society doesn’t really care.

When we talk about adult social care, there is a tendency to think these policies only apply to people over 65 but of course there are hundreds of thousands, if not millions of adult disabled people who need some level of support day to day. The current system is arguably not fit for purpose, for either group, but disabled adults under 65 tend to be ignored entirely in the discussion about how to improve it. At the moment care is means tested. This means that if you are disabled and need care your income and savings are taken into account when deciding how much you have to pay towards getting help. If you are married, your partners savings will also be taken into account, often resulting in disabled people choosing not to live with or marry their partner as it’s not fair for their income to be used to care for you. Being married also adds the additional complication that local authorities (especially in the last 11 years) increasingly expect partners and children to take on caring responsibilities even if this would mean they have to give up work. No impact on your relationships is considered, adding to the feelings of being a burden and relationship break down. We often hear about child carers, and schemes to make their life a little bit easier and yet the system that puts them in this position is rarely questioned.

If you have over £14250 in savings the local council will start to ask you to pay towards your care. How much seems to vary council by council and I know of many cases of people being severely overcharged. If you have over £23250, you are expected to pay for your care completely, although there is a cap on it, but the cap is extremely high and would eat the entirety of most people’s salary. Authorities also regularly check your financial situation to ensure you aren’t deliberately making yourself poor so that you don’t have to pay towards your care. Friends of mine have been accused of spending too much on food, and home improvements and threatened with the council sending them a massive bill for the supposed ‘overpayment’ they have made to them. I often hear the argument ‘well they just can’t do that, take them to court’ – which seems simple enough but disabled people rarely have the means to do this, financially or mentally/physically. Even when a disabled person does take their council to court and are successful, often at the next review the same things will happen again meaning that they would have to go battle the whole system again.

For me, I am lucky enough that I have savings and I live at home with mum, so although I pay her rent and towards the bills, I manage to save each month. I often have the internal battle with myself; is it better to spend a little bit frivolously and keep my savings a little bit under the threshold (meaning that I would have less freedom when I have to live alone for getting my house right) or do I save as much as possible and accept that I will have to pay for my care? In addition to this I have a Motability Car which I drive using my wheelchair, providing me with the freedom of socialising and going to work which I wouldn’t be able to do otherwise as public transport is not suitable for me. These adaptations are extremely costly. There is a grants scheme, but again It’s means tested and Drive from Wheelchair cars have deposits of around £8000 and rising, again meaning that a huge part of my savings could be expected to be used towards my freedom (to qualify for the grant you also have to be in work, education or voluntary work for a certain number of days a week – not an issue now but if my condition deteriorates I could be in a position where I can no-longer get a car that I can drive independently and would therefore need even more care). Oh, there are also the costs of a wheelchair. I wouldn’t get a chair that would meet my needs through the NHS, but I can apply to Access to Work – if I do this my current chair has to be no longer working (and it takes months for a new chair to be built which would cause issues with work), and they only pay a proportion of the cost (lets say you work 5 out of 7 days they will pay 5/7ths), so I also need to be aware that I will need to fund either a new chair in its entirety (if I don’t want to risk being months without one) or a good proportion of it. When calculating your care costs, none of these upcoming expenses are taken into account. You can offset some of your capital against ‘disability related expenses’ but councils are getting tighter and tighter in terms of what they accept under this category.

So, right now, I avoid social care at all costs. I rely on mum to provide my care at home, and I have a few hours a week to help at work paid for through Access to Work. I know though that at some point mum won’t be able to do the care anymore and I will have to enter the council system. I’m in a lucky position if I’m honest. If things are as they are now, I may be able to get away with just hiring my own help – expensive but less stressful than having to navigate direct payments. If I need more help that I can afford though or if for some reason I lose my job the situation will change and I’ll be thrown into the never-ending cycle of assessments (needs and financial) and being told what my carers are and aren’t allowed to do to help (often they aren’t allowed to clean or cook from scratch or go to the supermarket with you). Threats of budget cuts. Threats of being asked for money back that I have ‘incorrectly spent’. Right now, I live in fear of the day mum isn’t around anymore and on top of grief I am thrust into a hostile system which potentially leaves me with a quality of life that is unacceptable to me. It’s not my fault I’m disabled and yet it’s likely that I will be forced into a lower quality of life than my peers who have the same job but are non-disabled because of the current social care system (even if it was my fault in some way, I still don’t think humans deserve to be treated in this way). I don’t believe we should have to pay for our care in any way beyond taxation. As soon as any contributions are expected it leaves individuals and families punished for having a disabled family member and adds to the feelings and belief that to be disabled is a burden.

For now, I’ll continue to save and worry about my mum’s health and hope that things change before I have to deal with all of that.