Thursday, 22 June 2017

The Cost Of Being Disabled

Being disabled is expensive. Everything from paying for increased heating costs to paying out for multiple prescriptions every week, having a disability can be quite costly. There is even a disability benefit, Personal Independence Payment (PIP) that exists because it has been proven that being disabled means that you often have a lot of extra costs to pay that abled people don't have. Scope, a disability charity, estimate that these costs are on average £550 a month, that might come as a bit of a shock to some of you and that's exactly why I'm writing this post.


Some of my own extra costs include heating costs, extra travel costs such as taxi fares, pain relieving supplies such as ibuprofen gels and heat pads, and that's just naming a few. I'm currently going through the process of being assessed for PIP so at the moment I don't have any extra money to cover such costs which usually mean I go without vital things. For example, at the moment I can't afford to buy all of the daily living aids I need to help improve my independence. I've paid out for a lot of daily living aids over these past 2 years, some were necessary for recovery from operations and others were so I could retain as much independence as possible. I've had to pay for everything from dressing aids to adapted cutlery. The costs add up and at first I said to myself 'it's only £10 here and there, it's fine' but soon the list of things that I need kept growing and looking back I've had to spend a lot of money on things to help me out.

Extra costs can also come in the way of having to pay out for a carer or PA, often when being assessed for things like direct payments (this allows a disabled person to employ someone to help them out, rather than having the council supply someone) people don't end up getting as much help as they need so have to pay out of their own pocket too. Countless disabled people are having to pay for their own mobility aids as well because wheelchair services either won't help them or cannot provide anything suitable. I had to fundraise for my powerchair because of this but many people can often too proud to do this so end up having to pay out for mobility equipment that can easily run into numbers as high as £10,000, sometimes more.

Disabled people who want to play sport can find themselves also having to pay out similar costs. An abled person might pay around £100 for a decent bike but an adapted bike can cost thousands. I would love to have an adapted hand bike but will likely never be able to afford it. Small costs like hospital parking charges and extra/adapted clothing can all quickly add up too.

It's estimated that one disabled person in every ten pays more than £1,000 a month in extra costs, with the average being £550. The maximum payment you can get on PIP is £564.40 and thanks to the new system most people aren't even getting what they need and deserve so most of the time we are left having to either pay all these extra costs ourselves or we go without vital things such as a taxi journey to a hospital appointment.


I spoke to some of my disabled friends on Twitter about how expensive it is being disabled, I asked them about what extra costs they have and this is what they said:

"My wheelchair cost £5450 all in, with the backrest at £600 and cushion at £250, that's good second hand car money! I now have a new one that comes in at £3500 for everything and it's custom too. Being so tall means I have to have special customs every time." - @MikScarlet

"NHS crutches aren't designed for long-term use. I've had to pay out £120 for a suitable pair and they may need replacing every 5 years with specialist ferrouls for all terrain costing £60 per pair needing replacement every 3 years too." - @KtTup

"$6000 AUD for wheelchair. $9000 for Smart Drive (which thankfully I got 2nd hand for $2500). $200 ramp and at least $500 in extras. Then at least $10-15 one way to get anywhere (taxis). Then there are new tires ($45-50 per change + labour) and new hand rims ($400). And in Doctors trips (anywhere from $30 to $400), scans (Yearly MRI's are at least $1000). Also, about $6k-$8k in transport, at least $1k in medications and about $1k in miscellaneous disability stuff like strapping tape, heat packs, TENs unit etc. It's not cheap." - @Ixzianna 

"Don't forget about stuff like lost wages because you have more Dr's appointments, parking at hospitals etc. For one foster child we cared for we spent 'an extra' $15k on stuff a typical child wouldn't need. Even basic stuff was more money, needs specific type of shoes $120, button up tops that are more costly than t-shirts. Sturdy pants for when he falls. You're constantly paying that little bit extra." - @TheSloper 

"Replacing my stick every so often is around £30 a time. Cost of grabbers to pick stuff up off the floor. Cost of taxi's as I can't get buses. Cost of takeaways on bad days because otherwise I won't eat. Cost of heat pads. Cost of paying gardeners, window cleaners etc. I can't do these things myself." - @chronicparent30


"I had to use my ESA back payment to pay for my wheelchair, when it came it was put together wrong with bits on backwards and too tight. I waited for a new one because it was unusable. When it came it was also put together poorly but I functioned so I still put up with it. I needed it. Both chairs had wrong inner tubes in and since I've been paying out for new ones monthly at least. I thought because it was a little pricey it would be better than most but I've still had trouble. I can't afford an electric so I put up with this one. I finally found a shop that can get me solids and put them in for me so hopefully that should slow down the cost of tyres. I desperately need to sort out PIP." - @We_must_converge

"My wheelchair goes through Motability, so that comes off my PIP. But I'd be lost without it. Extra taxi fares for hospital appointments, if my partner is working she can't take me by car and it's rare I'm able to take a bus alone. Extra electricity, urine retention means spending a lot of time sitting on the toilet with the light on. Taking up to 45 minutes max to wee! Lots of small things add up." - @aberdeenlushie

"Splints: £20 a month. Prescription (prepay): £110. Gym membership (prescribed to help managed my conditions): £22 a month. Travel to appointments: £20 a month. Sturdy, well fitted shoes: £150 a year. Extra living aids (handigripper, kitchen utensils, special cutlery): £100 a year." - @htlcy

"Pre-prepared meals as too ill to cook. Extra heating and cooling costs as heat/cold aggravates my conditions. $120 physiotherapy per week. Prescription meds, over the counter meds, supplements, speciality topical cream. Wheelchair taxis. Specialised clothing due to skin issues." - @_Lilysea

"We purchased a height adjustable sink when my son was little for around £4,000 so he could reach from his manual chair and my 6ft1 hubby could also use it. Height adjustable bath (£8,000) needed 4 carers. Manual chair, £4,500. Bought slide sheets this week, new SafeSip drink covers and cooling pads. Also bought a mobile hoist, £2,300, as we had specific needs. All have to be serviced. Most of son's medical care is provided at a hospital 200 miles away. We travel every 6 weeks for one lot of treatment. Holiday insurance in 2013 to take my son to DisneyWorld was £625, insurance for his powered wheelchair was £722 for 2 years. Specialist trike for my son was around £2000, he was 7 when we bought it and I'm pretty sure most 7 year olds can get a bike for a lot less." -@ordinaryhopes

It's not easy being disabled, having all these extra costs and often not having the money to cover them. It's one part of being disabled that isn't talked about often and we definitely need to be discussing it more, raising awareness of this issue and having conversations about how we can lower some of these costs.
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6 comments

  1. My illness means that I have to spend £94.60 a month on prescriptions. I recently discovered the prepayment card, meaning that I now only pay £104 a year for as many prescriptions as I need. I had no idea that this existed! Although I am extremely happy that I am now saving a lot of money, I am very frustrated that health care professionals do not mention this more to those that could benefit from it.

    I also find myself spending a lot of money on taxis, especially on bad pain & fatigue days. I'm worried that to people that do not know/understand my illness I look lazy, but I physically cannot cope on public transport anymore. x

    Jordan Alice

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    1. I'm so glad you discovered the prepayment card, I'm lucky in that being on ESA means I don't need to pay for prescriptions but if I was ever able to work then the prepayment card would be a lifesaver! I find myself spending a lot on transport too, I think it's one of the biggest costs that a lot of disabled people have, especially if you don't drive x

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  2. Thank you for writing this blog post it was really informative.
    The costs associated with being disabled is definitely not talk about enough, I feel that there can also be a lot of judgement, due to people not really understanding about the need to have a piece of equipment that is suitable for you, in contrast to choosing equipment based on affordability.

    in regards to taxis, have you heard or looked at the taxi scheme?

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    1. Thank you, glad you found it informative! There is definitely a lot of judgement too!
      I don't use taxis often enough really to take part in schemes like that but thank you! x

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  3. This post was so informative. I had no idea it cost so much, thank you for opening my eyes. You do such an amazing job at raising awareness, don't ever stop!

    http://www.abeautifulchaos.co.uk/

    ReplyDelete


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