Tag Archives: 550

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. 

The Great Scope Bake Off

If you’re anything like me you’ll have been watching the Great British Bake Off wishing you could enjoy some of the treats on offer.  So what’s your favourite?  A chocolate brownie?  A red velvet sponge?  Or maybe it’s even a sausage roll?  Whatever it is, there was plenty to choose from during the Great Scope Bake Off this week.

The delicious entries were all for our new campaign – the 550 Challenge.  The campaign is all about raising awareness about the £550 extra costs that disabled people face, on average, every month and what better way to do it than to get people showing off their creativity in the kitchen.

The task was simple: bake something with 550 in it.  And the competition was fierce, with everyone vying for the title of Scope’s number one baker!

Our creative bakers certainly got people talking.  Check out some of the great creations:

What will your 550 Challenge be?  Could you create a delicious treat like our bakers?  Or maybe you want to do something completely different.  Whatever it is, it’s really easy to take part.

Just simply:

Take a photo or video with 550 in it.

  1. Share it on Facebook and Twitter and include #550Challenge and scope.org.uk/550.
  2. Email it to us at 550Challenge@scope.org.uk

Let’s get people talking together.  You can check out all the entries we’ve had so far in our gallery for some inspiration too.

T-shirt making day launches 550 Challenge Campaign

Life costs £550 extra a month for disabled people. It is time to get Britain talking about it. In this film Office actress Julie Fernandez launches our 550 Challenge campaign with a t-shirt making day.

If you’re looking for inspiration for your own 550 Challenge check out the gallery to see some of the Challenges that people from across the UK have been coming up with.

Remember to send your Challenge to 550Challenge@scope.org.uk or share it on social media with #550Challenge to see your picture on our gallery.

The 550 Challenge – on your marks, get set, go!

Ride more than 80 miles on a bike. In the pouring English rain. With no breaks.  Sounds exhausting, right?! What could be an even bigger challenge than that?

Yesterday thousands took part in Ride London, cycling the distance from the capital to Surrey and back, to support causes including Scope. It’s a tough challenge but after they’d passed the finish line we asked them to go one step further…

The 550 Challenge

Ride London participants were some of the first people to take part in a new awareness-raising campaign – the 550 Challenge. What’s it all about?

Life costs more if you’re disabled. From speaking to disabled people around the country, we’ve found it costs an extra £550 a month on average. Those extra costs could be anything from transport and taxis to get out and about, to an adapted knife and fork so you can eat.

As you can imagine, being that much out of pocket is having a big impact on people’s lives. This has to change – and it starts with getting the word out.

We want to raise awareness of the £550 extra disabled people are having to pay – that’s the big challenge. To do it we’re asking people all around the country to take a photo or a video of themselves with “550” in it and share it on social media. Together we can get Britain talking.

The tired cyclists at Ride London did a brilliant job of getting the ball rolling! Here are just a few of our favourites:

Two women and a man holding two big 5s and a bike wheel to make "550"

A man holds two big 5s and a bike wheel to make "550"

Man holding two big 5s and a bike wheel in vertical row to make "550" Two women holding two big 5s and a bike wheel to make "550"

A woman and three men hold two big %s and a bike wheel to make "550"

Are you up for the challenge too?

If they can do a great “550” photo after riding all day in the pouring rain, you definitely can too! There are loads of easy ways to take part.  You could:

  • Draw a 550 sign
  • Decorate a cake with 550 icing
  • Set yourself a 5 minutes 50 seconds challenge (or 550 metres or even 550 miles!)
  • Or whatever you like that’s 550 – get creative, get active, get together with friends or colleagues!

Then simply:

  1. Take a photo or video.
  2. Share it on Facebook or Twitter and include www.scope.org.uk/550 and #550challenge
  3. Email it to us campaigns@scope.org.uk

We’re looking forward to seeing what you can do! See more 550 pictures, find out more about the 550 Challenge and our extra costs campaign.

550 Challenge Gallery

Life costs £550 extra a month if you’re disabled – we want to get Britain talking about this with our 550 Challenge.

If you’re looking for inspiration for your own 550 Challenge check out the gallery to see some of the Challenges that people from  across the UK have been coming up with.

Remember to send your Challenge to 550Challenge@scope.org.uk or share it on social media with #550Challenge to see your picture here.