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The Expense of Having a Disability

Amy Sweeney by Amy Sweeney Additional Needs

Amy Sweeney

Amy Sweeney

My name is Amy and I’m mum to Wilson aged 3 and Ava aged 4. Wilson has cerebral palsy affecting all 4 limbs along with CVI but it doesn’t let it st...

There is one topic I could talk about for hours and that is the expense of having a disability.

Sounds a bit strange but anyone who has a disability or a child with disabilities will know exactly what I mean.

My son needs a lot of equipment, he can’t yet sit up or move around in any way on his own so as you can imagine, our house is full of different pieces of equipment to help him be able to play, eat and do anything he would like to really!

Luckily, we have the amazing NHS to provide us with some of these but there’s a lot they can’t.

He needs a therapy bench so I can do his physio at home, we really couldn’t do without it. A bench.

Seems pretty simple right?

I asked his occupational therapist about getting one and she said this is something I would have to purchase myself as unfortunately it’s not seen as “essential” so after a quick google I was shocked, HUNFREDS of pounds, for a little bench!

Now, I fully understand that with a lot of equipment for people with disabilities it has to be thoroughly tested and a lot of research is done into making these but some things I just can’t believe.

One example is a rain cover.

If I wanted to purchase a rain cover for the specialist pram that my son it is it was costing nearly £100, that was just for the cover too and didn’t even include the hood!

It just hurts me when there’s so much equipment out there to help but so many families who are having to try do without because they simply can’t afford it.

I just wish I knew why it was so expensive to have disabilities...

It sometimes feels like when searching online for a product and you type the word “special needs” it instantly doubles, triples in price.

I have come across a few amazing charities that help people access equipment they require but can’t afford and they do the most amazing work but there’s still a huge part of me that just wishes it was as simple to go out and buy something for my son when he really needed it.

There are so many different things that we don’t have that I know would help him and if breaks my heart that I can’t just go get it tomorrow for him!

Does anyone else feel this way?

Money is something we don’t often talk about, people often feel embarrassed to admit they can’t afford something but I felt like this was important to share.

There’s ALOT of parents out there that simply can’t go back to work due to their child’s disabilities and yes, there is carers allowance but that’s nowhere near enough to be able to not only live on but also purchase items for the child to help them with their therapies and just in general, and as a parent, that truly hurts.

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