The Daily Mirror is today launching a new "Caring For Carer's" campaign to highlight the disgraceful situation regarding the level of benefits for people who care for disabled relatives and friends.
At the moment, Carer's Allowance is just over £53 a week, no matter how many people you care for. Both my sons qualify for Disability Living Allowance for their ASD and so I am entitled to receive this paltry amount. But, should I be lucky enough to be able to find a part-time job that I can do while they are at school, I cannot earn more than £95 a week net or I lose the benefit.
Before I had children I could earn up to £200 a day. I had intended to go back to work after they were born, but because of their disabilities, I was not able to leave them in the care of anyone else. To do so would have meant finding a specialist nanny, the cost of which for two children would have wiped out my earnings. Added to this, the fact that a journalist's life is shift-working and the situation would have been untenable.
When my sons were in mainstream school they would sometimes refuse to go because of the stresses they faced in that environment, meaning I would have to have them at home all day. What kind of employer could put up with a worker needing great chunks of time off? My youngest needed one-to-one swimming lessons as he could not cope in a group and this was expensive (and every child should learn how to swim if they are able). I also helped out in school several times a week because I felt so guilty that they were difficult to cope with.
Now, despite the fact they are both at a specialist school, I am still unable to get a full-time job because of the long holidays they have. I cannot leave them in a holiday scheme because they would find it distressing which would have a knock on effect for their lives and ours as a whole. So, we must rely on my husband's income (and he was out of work for six months this year), our boys' DLA and my princely sum of £53.10 Carer's Allowance. We live in Surrey, an expensive part of the country, because it is near to their school. We are only glad that their fees are now paid by the LEA or we would have to sell our house and seriously downsize to afford the cost. Before the LEA agreed to take responsibility for the fees, all the DLA and Carer's Allowance went towards making a small dent in the special school fees. Even now, it still disappears into the great well of things they require for school and to support their special needs.
But still, I would say that we are lucky because we have at least one decent income (that my husband has to travel three hours a day to earn). What if something happened to him (God forbid)? Then I would have to care for all three of them on £53.10 a week. This is the situation for many carers today. Many face huge debts as well as the stress of caring for someone who is sick or disabled or the headache of making ends meet on a pittance.
This is what the Daily Mirror says:
These are the Mirror's three demands for the Caring for Carers campaign, which we are launching today:
An immediate Government review of carers' benefits and the Carer's Allowance to be increased.
More respite breaks and health checks for carers.
Carer's Leave to be made into law so carers can ask employers for discretionary time off work.
I whole-heartedly welcome this campaign and hope you will support it too. How can you help? You can visit the Daily Mirror's blog page by Emily Cook to read the whole story. Then you can visit the Carer's UK site to sign their Poverty Charter in support of the campaign. If you're reading this you probably have an interest in special needs, so I hope you will take a couple of minutes to do this. I am a carer, though lucky enough not to be on the poverty line. After our recent brush with redundancy though, I know that could change in the blink of an eye. So I am sighing the charter and will do anything I can to support this worthy cause and I hope you will join me.
Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media.
Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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This was a great cause. Good article.