Flash Says…

Do I have a carer? And if so, who?

Posted on: 2011-09-09

For some disabled people, it’s easy to answer this question. My friend Imogen is a single person who lives independently, supported around the clock by two carers – one week on, one week off. For those of us who require more support, however, it’s a grey area.

I don’t call any one person my carer. It varies; if I go to a gig I always take advantage of the deal for disabled people and get a free ticket for an “assistant” or “companion”. After all, I need help manoeuvring especially when I’m tired, and will need someone to fetch and carry from the bar for me throughout the event. The person who comes with me is usually my husband but not always; it depends which band’s on. I had a number of female friends competing to be my carer when I had tickets to see Robbie Williams!

At home, I struggle to define who is my carer. I receive disability living allowance (DLA) at the middle rate for care, which means I need assistance throughout the day, and this is true. But £49 per week doesn’t go very far. For that I can buy 5 hours of time from my wonderful cleaner, Lena. She spends Thursdays sorting the house out, doing all the housework that I’m ashamed not to manage; everything from emptying the bins, through hoovering, to several loads of laundry. Anything which involved bending down or lifting more than a small weight is a no-no for me.

I call Lena my cleaner. Sometimes I check myself and call her my assistant instead; she will do other tasks such as rearranging the crockery cupboard, helping me sort a box of items, gardening, or just fetching a jumper for me from upstairs. In fact, to my knowledge Lena hasn’t refused a request yet, although she does sometimes offer to do too many things – I draw the line at letting her walk my dog!

But in fact, the help I need IS throughout the day and certainly throughout the week. I’m always asking my husband to fetch things, join me to prepare a meal, even to help me stand up. Social services refused me any help because I have a husband who can do it, although they offered me a list of carers that I could pay. But that’s not the same; if I was single, I’d need care and while I’d have to give up my DLA care allowance towards it, I’d need several hours of external support, ideally every day.

And this is the thing. Many partners become carers in a way that is not officially recognised. They do not identify with websites or support groups for “carers” but they are quietly there, assisting, whenever they are needed. They are the ones who are expected to be strong. They are the ones who can’t take time off with ill health. DLA could not even begin to cover the wealth of work they do. It’s a gesture but no more.

Although I have Lena as a formal assistant, it’s my husband who takes the role of my carer, going above and beyond his usual role as my partner. But if you ask either of us to name my carer, I bet we’d say Lena, or no one at all…

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5 Responses to "Do I have a carer? And if so, who?"

This is all very true and I think social services know exactly how to work the system so that people like you end up being let down and they save money. What they don’t see, like you say, is just how much partners do. They take advantage of people like your partner who would never let you go without the things you needed. I don’t think you should have to do this, but I do think you could get support through access to work .. who can provide PA support to people during working hours.
It’s a very unfair situation, and I’m sorry you’re in it.

I tell you what really is unfair … I am disabled and need a carer or PA, but because I haven’t got friends (I don’t get out) or family to do it, I have had my DLA claim turned down because of it.

When I was married and had a husband to help I was given the middle rate of personal care. Now that I am living on my own I don’t get any personal care rate, even though I really need it more now! I have been appealing this disission for nearly 4 years. (Yes I know that is a long time but that is down to their incompetence, amonst other things, between the DWP and the tribunal service my file has been lost TWICE)

One reason for turning me down, in the previous appeal, is that they say I am coping without a carer at the moment, but that is only because I don’t have anyone to do it and I don’t have the money to pay for one.

Some days I don’t get to eat and have had to survive on dry sugar puffs for a few days before now. I constantly live in fear that tomorrow I will not be able to move and therefore keep the necessities near my sofa (which I sleep on every night) just in case.

I would love to have someone help around my house, to empty my bins, do some hoovering, or even do one load of laundry for me, but I can’t get any help there either. I have to watch the pattern slowly disappear on my carpet, cos it doesn’t ever get hovered and I hate admitting it but I have frequently had to reuse clothes from the laundry basket.

Imogen I envy your dilema.

Very well written! I never take advantage of the concessionary tickets for disabled and really should – do you need to present anything to “prove” your disability?

It depends, Tara. Generally (e.g. at a museum) I would just say “one disabled and one assistant please”. For festivals you do often need to send in your DLA letter (or copy of blue badge, etc) but they will say this on the access info pages of their website. Some cinemas have a special pass that you have to pre-apply for (Odeon I think) but my local Picturehouse just lets my husband in for free. In general situations I don’t get asked for “proof” but it’s fairly obvious (I’ll be in a wheelchair for example) but in any case I tend to have a disabled person’s bus pass on me or other paraphernalia which I could show if necessary I suppose. The social model of disability supports people to self-identify as disabled so I wouldn’t expect to have to prove it.

This article might provide you with more information and examples: http://flashsays.com/2011/01/08/dla-the-gateway-benefit/

Interesting point with the Odeon – I don’t have a CEACard that they ask for, for a free attendant seat. I’m ok with that for the time being; anyone I would ask to come with me would be a person who wants to see the movie anyway, and if I can’t find someone then I’ll either take a risk and go alone (unlikely) or just not go (which I suspect is why they introduced the scheme).

Unfortunately the Odeon website doesn’t take this circumstance into account. If I book a wheelchair space, I can’t book a seat next to it unless I use a CEACard. Even trying to explain this circumstance whilst at the box office is hard work, though does at least succeed in being able to book one of the seats.

Of course, I’m not going to be going to the Odeon for some time. The only decent accessible seats I could find in the area were in the gallery seating at the Cardiff IMAX. All the others have the spaces right at the front near the screen, leaving you looking upwards and turning your head to follow the action on the screen as though you’re at a tennis match. The gallery is now closed, to be rebuilt, leaving no access to the spaces which are otherwise at the end of a long flight of stairs – a fact which wasn’t mentioned on their website

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