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What are your experiences of extra costs as a disabled person?

Sam_Alumni
Sam_Alumni Scope alumni Posts: 7,674 Disability Gamechanger

Life costs more if you're disabled, disabled people and their families face many extra costs. These extra costs include expensive equipment, higher energy bills and sometimes paying over the odds (e.g. with insurance).

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So we would like to ask you what are your experiences of extra costs as a disabled person? It would be great to hear about your real lives and how disability affects you financially.

Scope
Senior online community officer
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Comments

  • Markmywords
    Markmywords Member Posts: 419 Pioneering
    edited January 2018
    Due to being alone, I have to get tradespeople in to do even the most simple things.

    I pay regularly for gardening and cleaning. This year I expect to pay to have some home maintenance and decorating done too.

    Also I have a ridiculously impractical car as I don't have the mobility to get into a small, efficient one.

    Recently I received a refund after cancelling an insurance policy. They sent a cheque for a little over £10. I decided to throw the cheque away as the effort and cost of getting to a branch wasn't worth it :/
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,674 Disability Gamechanger
    @shonalouise wrote recently about having to buy pre-packaged food - this is a cost people often don't think about for disabled people!
    Scope
    Senior online community officer
  • Webbis
    Webbis Member Posts: 9 Connected
    DannyMoore - I wondered if you'd come across these pods: http://www.creativecareltd.com/products/
    I saw them at an equipement show and they looked quite robust.  they might help to keep you from destroying your bedroom while you sleep.



  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    Live alone and have to pay £15 odd for a cleaner each week.

    Gardner and odd jobs around the house varies depending.

    I have to have a large car even though it's Motability so it was £800 up front and will be replaced after 3 years. A further £200 for a subsidised hoist and fitting. £2700 for an electric scooter. £600 for a spare battery. £40 for the damage when I took it on a plane and £75 for a service after 2 years. £60 for my first old second-hand wheelchair. £530 for a new replacement wheelchair that was much lighter. Fuel costs for the larger car.

    I did try to get travel insurance late last year but was refused.

    Most of it apart from doing most of my shopping in a small store rather than a large one, so prices are higher.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
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  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    I guess I forgot that instead of retiring at 66 I was forced to leave work at 49. I have no idea how much that cost me but, when I worked in London 20 years ago, my salary was £40,000pa plus bonuses and additional support extras amounted to another £10,000 to £15,000 pa. Imagine how much I could have earnt including inflation.

    It was replaced by ESA and DLA but now my mother has died I no longer get those until the money is mostly gone (from the sale of her house and split with sister). I'll also have to fight and prove I haven't wasted money which I guarantee they will say I have.

    I will probably go way below poor.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Nystagmite
    Nystagmite Member Posts: 596 Pioneering
    For me, it's a lot of little things. But they soon all add up:
    - ear plugs
    - lock laces (because no-one seems to do trainers with velcro for adults)
    - wet wipes / nappy sacks

    I've also had to buy things like noise cancelling headphones. my larger laptop 

    The extra costs of being at home all day and the extra washing.

    The fact that if I want to go away, (I don't drive) I've usually got to pay for the train + hotel. Unless I want (which I don't for my own safety) to be getting a train really early or late.

    If I want to go to a sitting down gig, the eats where I can see, are sometimes more expensive.

    Having to buy non-prescription medication because my prescription medication causes all kinds of problems.
  • iza
    iza Member Posts: 565 Pioneering
    edited January 2018
    The additional cost I am paying at the moment due to my medical condition is : heating flat as I am house bound and I am sensitive to cold 
    and private dentist care (once I visit my home country). 
  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    edited January 2018
    Hello Everybody reading all the costs of being disabled.  I agree I have extra money I try to put away for the garden.  One of the things I had to do is to make use of the NHS.  I used to buy footwear for me.  Just been now to order new boots.  I know all I did was enquire to my Doctor who sent me to a consultant.  Who said yes so now I have new boots every two years.  Please can I suggest those who find costs expensive have a chat with your doctor.  I know ordered Velcro ones.  @Nystagmite is worth enquiring your doctor.  Been into clinic today.  Asked about types of footwear.  I have to have soles put in all footwear I have.  Can have any colour of footwear. @mikehughescq I read you piece on paying for a chiropodist or podiatry.  I again would have a word with you doctor I have toes missing and have fallen arches and other issues with my feet.  I can not cut my nails and the rest.  So when I was looking around got in touch again with my doctor.  Consultation again and then have feet done on the NHS.  I believe some area do home visits and also found this out so do certain opticians.  I am only trying help here.  Do not like to see my friends in the community paying for certain things when I know there are possible solutions.  All of us should be supporting each other.  With ideas and solutions and problem solving.  It is not interfering just being there for each other with answers.  I do understand every one problems and costs.  I also have problems with costs and especially for my mental state the big one for me is energy costs.  Solved that with smart meters.  I hope it works out.  Got heating off now will have to put it back on now.  Getting cold.  My other costs are extra on just keeping a house clean.  Got rid of hoover and have vinyl flooring all over house.  Lot cheaper than carpet.  Get ripped off everytime.  Most days need a sweep can see dust on surface.  I have had to budget constantly since leaving home.  Have to no choice because I do not know the next move the DWP will be.  Just in the past spent thousands on cars before motobility.  Thousands on private rented houses and furniture.  One best thing I ever did was to set up business.  Although folded to illness.  Have business brain and have to be savvy with money.  Living alone extra costs are a nuisance and I know I have been ripped off by so called friends and the rest.  It is a part of being disabled that nothing is disabled friendly as you would call it.  Where are the shops and stores catering for our needs.  Worse for me to find replacements for my kitchen equipment and got blender.  Base cracked on old one had it ten years.  Paying over odds for a lot of stuff.  Especially cooker with a hob top oven knackered outside rusting away.  Microwave only replaced last year.  Did not last long.  Freezer non defrost still working.  TV running into double numbers with those.  Question why does not anything last long anymore.  Says it does this but still paying more.  I hope you all have had similar experiences.    I know I have.  Thank you for reading.
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  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    edited January 2018
    Hello @mikehughescq Thank you for reply.  I go to local to health centre then use the day to go shopping or anything else.  You are right gets you out.  I wonder if it possible an idea to have a website through SCOPE set up .  I do not know much about these things.  So people with solutions to every day problems can advise our community.  Put down their tips and advice for every day living included equipment, gadgets to help and aid our community  I would assume they would be a disclaimer involved.  I do not know.  If some one advises on a particular item of interest.  Long time ago I wanted to set up a company dealing in such things.  Also information on all aspects of disability.  It would involve walk in centres and people could come in go on line and the rest is history.  Sorry it never got off the ground two reasons banks and finance.  I had my own money and business plan but with hindsight was not very good mentally.  When you have run one business and have other ideas.  Then it goes down hill the lack of co-operation from the powers that be like banks, government have the last word.    Keep dreaming.  Anyway lots of information out there it is finding it.  Nice to talk to you. 
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  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    Ha ha, my brain has completely gone to pot. Thank you @thespiceman for reminding me of the home stuff. I cannot sit in a normal chair so I have to use a riser recliner. This one cos £1200 odd as it has to be comfortable enough to double up as a bed at times. Also, when I do use the bed I have to have my legs slightly elevated, hence the electric bed cost over £1300.Then all the little things like 4 or 5 gadgets to pick things up off the floor when I can't bend down. A mitt for use in the shower as I can't grip a cloth properly and even a gadget to wipe my bum when I cannot bend enough to reach. I haven't been able to twist to reach for a decade. Phones in every room so one is always handy. A mobile so I always have a way to call for help if I fall when I'm out of the house. There are so many more little bits and pieces a lot of which are for "just in case" situations. I haven't even considered decorating which, as I smoke, will soon need to be done.

    You are correct though. My biggest fear is that things wont last and will need replacing. I did manage to swap my really old freezer for mum's new one after she died. I do need to sort out a new DVD player though. I thought having a Blu-ray player would be a nice idea when the money from a back-dated payment came through and my DVD player was a decade old but the DVD crystal has burnt out so need to find a way to connect up some other way to play DVD's. The crystal only lasted a couple of years. Ofc blu-rays play fine.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
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  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    edited January 2018
    Hello @Topkitten How are you?  Thank you for reply.  I am an old fashioned gent as I say what is DVD player and blue ray is it.  I am still in the dark ages.  I am sorry to ask I know I am behind the times.  Not used to this modern stuff and times.  Spent a fortune on vinyl and the rest.  All went to pay for the outstanding tax bill.  When I had a business.  Any way on CDs found all my favourites music on them last few years or more.  Old days of houses you remind me as I am related to Victor Meldrew and Frank Spence everytime I moved.  All my equipment in the house went bust.  So off me and friend went to Currys to find what we need.  A young lad approached us I had a long list and a budget.  One item he showed me was nearly all the budget.  I spied another guy lot older and wiser sales person.  Agreed to a limit.  Most of still works but scared now getting to that critical point ten years old.  I wanted one of those chairs that elevate you and other things like a bed.  Found out too much and the insurance to cover it all.  Found a community shop run by the county council might be one in your area.  Stock barely used seconds bought a leather settee for under £300.  Normal price double in those swanky swish show room stores on those Industrial Estates you know SCS is it.  Been there with mobiles amuses every one because can not hear the voice on the end.  Have it in a plastic zip bag with plugs and then I can hear but it takes me about five minutes to get it all set up.  By then they have gone.  Have to say if want to ring me send text first.  I know there is a gadget or piece of equipment for every use.   Costs going up on all this stuff we been warned due to Brexit.  Well I do not believe it.  Great to talk to you speak to you soon.  I will find my way out of the dark ages and move on some time .
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  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello @Victoriad Thank you for information.  I never knew this.  Good much appreciated.  I am looking at websites all time to try to get me in the modern world.  Only recently went on line found that supermarkets have own electrical and kitchen websites.  Sorry about I know I am still amazed about what is out there.  You can order stuff then collect.  I am learning all this.  Just me afraid.  Thing is if you go to big stores like TESCO have in store website can order and pay for stuff there.  Just found this out a while ago.  My luxury is to eat well and my one big treat to expand my collection of my music that used to have.  Also might consider this magazine.  I assume it is on line.  Instead of coming through post.  Added expense know it is £3 could be a possibility.  Thank you.  Great to talk to you speak to you soon.
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  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    @thespiceman Video tapes were replaced by DVD's (Digital Video Disks) and Blu-ray is just an much improved version of DVD's. A DVD player has a single crystal to control the laser to read the disks but a Blu-ray player has 2 crystals, one for Blu-ray and one for DVD's. I knew a lot of the DVD crystals in Blu-ray machines were just cheap ones so I got a good quality unit thinking it would be better.... evidently not. Now the Blu-ray player will only play Blu-ray disks and not DVD's. So I need to sort out something else to play DVD's as I don't want to spend a lot replacing the surround system.

    I started switching from vinyl to CD's in the early 80's so only have a few vinyl left, those I want to convert to MP3 format. I never play the CD's except in the car, play MP3's almost all the time I listen to music.

    I am an old man of 61 though so it isn't age that is the issue, just a matter of research.

    As for me.... I was ill last week and hardly left my chair for almost 4 days. The medication issues aren't helping though. I see the doctor next Monday so hoping he will have some ideas. Fully expecting my third disaster though as bad things always happen in 3's. How I have managed to get this far I simply do not know, I have been living on a knife edge since before Xmas. Still haven't managed to complain about the poor treatment (or lack of it) by the hospital. Just don't have the energy or courage.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Nystagmite
    Nystagmite Member Posts: 596 Pioneering
    edited January 2018
    what has my GP got to do with my difficulties?

    Also, please can you use paragraphs? It's making reading your posts difficult.

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