Saturday, July 10, 2010

Families with disabled children : Your Views


Contact a Family surveyed 1,113 people about how they were coping financially and found 23% went without heating and 14% missed meals to make ends meet.

Parents of disabled children share their experiences of financial struggle:

I am a lone parent with a six-year-old disabled child. I care for him full-time with no help. The only income I have is his DLA and my carer's allowance. We have never had a holiday, I go without meals so I can afford the food he eats and the therapy he needs. I fight all the time to continue his quality of care, and I'm sick of it. Society has a duty of care to the sick and vulnerable but this government seems to be targeting them.
Betina, Hove
I know that many people in my area claim for kids with so called disabilities. They get loads of benefits, this needs to be looked at. There is nothing wrong with them, they are just unruly kids getting holidays paid for by the Family Fund.
Jane Davis, West Midlands
I have two disabled children, one of whom I claim benefits for. I used to work full-time but had to give it up when I could not find childcare - the previous and current government promise action on this but so far there is none. My children are 15 and 13 and cannot be left to look after themselves. Last December my daughter's DLA was cut and the carer's allowance I received for her taken away. The disability premium element of the child tax credit was taken too. I cannot claim JSA as the job centre say I am not available for work because I care for two disabled children full-time. The family income has dropped by around £600 per month. No holidays, no treats, no money to go out with her local authority paid carer every Saturday, no money to run the car, no money for clothes or running repairs to the house. No social life for anyone in the family. I do all of this on my own and I feel like I've been forgotten and dumped on from a great height. "Committed to supporting the most vulnerable"? The way things are going, I'll end up being committed!
Jayne, Birmingham
As well as not having information available such as DLA, there are also other benefits such as severe disability enhancements attached to tax credits, the benefit agency only told me after a year of claiming DLA. I had a battle to reclaim £1500 which I did, successfully. Besides this there is the enormous challenge of staying in work when you have a child with complex needs. I have had to take time out of my career and change jobs completely so that we can stay afloat. We would not manage on income support. There has been no respite available in five years and the whole family is affected. Regular respite would also help people to stay in work and keep some dignity and sense of identity.
Fiona, Poole
Financially it only gets worse when your child leaves school as you still have the same or more care to provide. You lose your working tax credits if you are working 16 hours a week. As you then have to work 30 hours a week, you then lose your carers allowance. It's a no win situation.
Hannah, Fife
I'm a mother of an eight-year-old daughter with Angelman Syndrome. I came out of work last year as the stress of looking after a disabled child and working was just too much. I found I had no support. Our debts are rising as we try to make ends meet. We feel we're in a downward circle that we will never be able to get out of.
Elizabeth Healey, Oldham
Our youngest child is autistic and has other physical difficulties. A year or two ago we would try family activities and if we had to leave in just a few minutes because he couldn't cope it didn't matter so much financially. Now we have to forgo trying activities because unless we know they will be value for money we can't risk the cash. I work 10 hours a week, my husband works full-time but it's a constant struggle to be reliable and keep appointments. If our son is ill, which he is often in the winter months with respiratory issues, I have to take unpaid leave. Our other children miss out on a family holiday. It certainly has been harder financially in the last 18 months or so. As if life weren't restrictive enough, no matter how much we love our child.
Jacqueline, UK

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