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My family and the extra costs of disability: #100days100stories

Virginia from London first shared her story with us in September 2014. We’re republishing it here as part of Scope’s 100 Days, 100 Stories campaign. Virginia has asked for her name to be changed, as she is worried that speaking out will affect her son’s care package.

My 12-year-old son Kyle has Down’s syndrome, autism and global development delays. He’s a very funny, happy, nice smiling young man, but he doesn’t communicate verbally and needs a lot of extra support.

I am also disabled – I have functional movement disorder and a spinal injury and use a wheelchair or mobility scooter most of the time.

The things you don’t think about

There are a lot of problems that people don’t realise exist when you’re disabled or have a child with special needs, and some of them are costly.

Kyle has incontinence and feeding issues, so we’re washing his clothes 10 times more than we would normally. The washing machine and the dryer are going nonstop because he constantly needs spare clothes, and the bill goes up and up.

Kyle wears nappies which are provided for free, but we go through so many each day that often they run out and we have to buy more. Sometimes we have to reuse them; we just can’t afford any more. He damages a lot of clothes – he folds his legs under him so he tends to rip nice ones at the crotch – so we’re always buying new ones. I would get them adapted by a tailor, but we can’t afford to.

I can’t wash Kyle’s hair any more because of my spinal injury and his dad’s out seven days a week working, so the only way we can get his hair washed is to go to the hairdresser. Again, it’s for a price.

The extra costs have meant we couldn’t buy Kyle many of the things that would have helped his development. I would have loved to buy him special sensory toys as he got older, but that was out of the question. We had to buy toys for babies instead.

The costs we pay add up to hundreds of pounds a month, and if we could afford to get Kyle  everything he needs for his development, it would be hundreds more.

My extra costs

My local council wouldn’t give me a mobility scooter because in order to qualify you have to need it inside the house. I can get about on crutches but there’s no way I could manage outside, so I had to go out and buy my own. It was £650 second-hand. I could lie and say I need it indoors, but why should I do that?

There’s not as much financial support when you’re disabled as many people would assume. There are a lot of criteria you have to fit, and if you don’t fit those criteria, you’re stuck. Even when one of my crutches broke, the hospital told me to buy a new one off the internet.

If I could just get an electric wheelchair I could save everyone a lot of time and money, and be more independent, but it’s not likely to happen because I don’t fit the criteria. Ironically, I could probably get council funding for a carer to push me, but not for a wheelchair!

My husband and I worry all the time. The nappies run out and it’s a panic – how are we going to afford to pay? Do I get out a credit card? We’re trying not to get into more financial difficulty than we’re already in. It’s not an easy way to live.

The Extra Costs Commission wants to find out more about the types of extra costs disabled people face.  Take the survey for a chance to win £100 in Amazon vouchers.