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

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  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
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    A number of the posts here refer to prices being higher from "proper" disability suppliers.

    There is a very large number of people who seem to think that every disabled person gets money thrown at them and has to pay for very little. Where and when this began I have no idea but, despite all conversations and posts I ever have/make, continues to grow. It has become an urban myth now it seems. Until this idea is kicked out into the trash I believe this sort of price gouging will continue

    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.
  • thespiceman
    thespiceman Community member Posts: 6,379 Disability Gamechanger
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    Hello every one reading comments about the disability price tag and more for being disabled.  I have a struggle and a argument with most car dealers.

    Seems if wish to have an automatic car prices are always higher.  I agree that there may be limited numbers made.  Every time looking at automatics costs and limited choice.  I know speaking to people I have met in the car dealerships.

    I now get a car on the Motobility Scheme, well I can get a automatic, problem is I can have this model but have to pay advance payment.  Last time was OK but told by dealer rules may change.

    Last time got what I always have but when contract comes up only issue was that the car I requested not made for a year.  So had a extension.  Do know could be hard to find anything if contract is cancelled due to PIP.

    I have met people on this forum and others whose unexpected costs are extremely high.  When trying to get a car.  Adaptions and the rest.  Especially those whose use wheelchairs and need a hoist, room for their wheelchairs, seating and other sorts of adaptions.

    Looking in the Motobilty magazine for specialists who deal and do this sort of adaptions.  Seems not many in my area.  I know last car I got from the scheme.  It came via Newcastle dealership and came down to the one in Durham.  

    One thing I was not aware of was the notification from my dealer that prices may change and I could end up paying an advance payment.  If though the manual listing of cars on the scheme says no advance payment for the car I choose.

    Unexpected surprise.  That is why I am concerned for my own self and others on the community who drive and find themselves with a problem.  If I lose PIP and trying to find another dealer with sensible priced automatics.  As I have said spent thousands and thousands on automatics.  Before I joined the scheme.

    Plus I recall addition costs for insurance because I was disabled and drive an automatic.  That cost more than if I was able bodied not disabled.

    Best wishes and take care nice talking to you all.


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  • GrannyMo
    GrannyMo Community member Posts: 1 Listener
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    I have found the past 3/4yrs that I just can't use buses at all anymore the way they brake constantly hurts me so much especially the base of my spine not to mention the hard seats. I now need to pay for taxis where ever I go. My energy bills have gone up so much too as I need the house warm ir my bones seize up
  • feir
    feir Community member Posts: 397 Pioneering
    edited January 2018
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    so far i have paid for crutches, compress bandages (different types for different pains and areas of my body), taxis to appointments or random emergency hospital visits, phone calls to 111, pain killers and heat/cooling gels, hot water to sit under in the shower when the pain is really bad (i'm on a water meter also but this has been capped using watersure), incontinence products, extra cleaning products and extra washing, £500 bailiffs bill because i was in too much pain to pay my council tax or even open their letters to know to pay for it (i thought you could pay it any time during the year but apparently not). i'm still housebound and have a poor quality of life despite this. wouldn't mind having some adaptations to my house or ideally moving to something more suitable for my needs but gonna wait and see if i get better before attempting this. right now i would like to pay for someone to take me out, a wheelchair to be taken out in, and to help around my house, and to help sort out my finances/mail as i just can't think any more and suffering from depression now so feel like it's too much to cope with anyway.

    my kids are doing all of the housework and shopping (which they need to learn anyway) but none of my personal care as i don't want that sort of burden on them.

    even before i ended up this bad i was buying special aides so that i could continue functioning, and they did help as my disability was mild then. i get my stuff from china or medical sites so they are cheap luckily and i don't pay VAT.

    biggest price i feel like i'm paying is for the loss of my dignity as i'm left to struggle and being invalidated when i ask for help.




  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
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    @feir get your GP to arrange an Occupational Therapy assessment. They can provide some simple stuff to help. There are also companies that will rent wheelchairs for a small fee for you to try out to see if it helps

    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.
  • thespiceman
    thespiceman Community member Posts: 6,379 Disability Gamechanger
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    Hello @feir   How are you ?  Sorry what is happening at present.  Please can I ask if it is possible do you need some support and help from a welfare sort of perspective.

    I know it is difficult to ask for some one to assist you in day to day activities.  I believe you could get an Occupational Therapy assessment as Top Kitten says.  You are under a lot of stress I can feel it and some one to help with simple things like your post, unpaid bills plus other things like you have requested for.

    I understand being housebound and expected some one to take control and run your life for you.  That will not happen.  There are charities out there who have available a range of services and advice.  Plus your local council as well.  Also the worry that a stranger become a life line coming into your house.  Not used to that.  I am fully aware of your concerns so would I.  Trust is the most important thing is it not.

    When I see you struggle feel loss of dignity no one wants to see you in pain and be emotional.  I know I have been there so many times.  Still am most days.  As does this community.  Everybody cares.

    The choice is yours what you wish for.  Please try to look at options.  Either on the web or probably from SCOPE.  Speak to your GP.  The support I give is I am here to listen as are this community with useful information and messages of hope.

    Please can I say it is hard and difficult asking for support.  You have family but they have there own lives and I can understand that.  Also they are there to assist with minor tasks, shopping and moral support.

    I never involved my family in my endeavours to go with my own support and care.  Do not wished them to know any way but that is me not you.  I live on my own, proud old fashioned gentleman in early fifties asking for help, advice, assistance so hard and mumble get stressed all the time.  Get anxiety sweats just asking for simple things..  Looking to future maybe will need some support.  Getting great support, help, advice here.

    I have to do this asking for what I need because in the end no body is going to ring you up how can I help?  So I have to grit my teeth and make a script out what exactly do I need now.  Find some one and tell them.  Using the script, I get nervous on Phone.

    I know I can do this I have to.  I hope and pray you can do the same.  Best wishes Take care nice to talk to you.



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  • foxuk
    foxuk Community member Posts: 103 Pioneering
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    Hi feir - just one little bit of information. Pain relief, bandages etc should be on prescription. If in Wales that means free. If in England get a pre paid thingie which cuts the cost.

    I know that many receptionists make us feel like scroungers BUT we and our families paid for the NHS. The doctor's attitudes to pain relief have changed since the damming NICE report and they are far more positive. Gone, thank God, are the monthly fights to just keep what we have let alone get what we need to function. That's at our surgery anyway.

    Things like Gaviscon on script can save a fortune - My wife's drugs cause GI problems and we were buying Gaviscon at over £10 a month now free. The twerp who delivers did make a comment about 'milking the system' but he'd have been the same if it was life saving medicine anyway (I went to school with the little **** and he hasn't changed).

    Get a benefits check by a reputable charity and if it doesn't sound right get another one - the quality of information varies depending on the area you live from good to plain damn wrong.

    I was a child carer and it gave me a sense of independence that has served me well in later life. The responsibilities develop one's ability to balance things in a more mature way. My dad and I had an informal code - when we were 'workmates' we called each other Fred - when he was parent he called me Jon (or Jonathan if in deep doodoo) and he became dad. Things like that develop naturally and it is quite normal. 

    Good luck and I hope that helps.

    Jon
  • [Deleted User]
    [Deleted User] Posts: 126 Courageous
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  • [Deleted User]
    [Deleted User] Posts: 126 Courageous
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  • feir
    feir Community member Posts: 397 Pioneering
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    thanks @topkitten i didn't know the GP could arrange stuff like that, been trying to get an appointment with them for about a month and finally got 2 for next week so hopefully i remember to ask for an assessment at one of those.

    @thespiceman i'm not too bad asking my family to help, there are 3 kids living here, all teens, and it's mostly their mess anyway or their stuff that needs sorting. i'm hoping to get PIP and then pay someone to sort the other out the things i don't feel able to do myself at the minute, i know i will eventually find ways to cope better but right now my brain just seems to have stopped working. thanks for the support.

    and @foxuk i didn't know everything i could get from my GP but i did know about the medication i could (and can only get the ones that actually work on prescription), it was mostly being unable to get down to the doctor that meant i bought them myself and they were cheaper than even getting a taxi to the dr and back (except the crutches). nobody is rude to me round here luckily, the drs receptionist is nice, and the chemist are too, bit of a problem that we have locums only so you usually see a different dr every time you go but sometimes if one person misses something the next dr won't. :)

    thanks all. i didn't even expect help off that reply but you were all great.
  • Nystagmite
    Nystagmite Community member Posts: 596 Pioneering
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    Ella1976 said:
    Any good kind Dr will not make you pay seperately for 102 perscriptions a week..But it annoys me my Parents are to OLD to claim carers ?Do i get my 8 year old to claim
    Your 8 year old can't claim. You have to be over 16.
  • [Deleted User]
    [Deleted User] Posts: 1,741 Listener
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  • thespiceman
    thespiceman Community member Posts: 6,379 Disability Gamechanger
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    Hello @Victoriad   Thank you for information on automatics.  I will have to look at what is available if I lose the high rate of motobility through assessment of PIP.

    Hope you OK Speak to you soon.

    Hello @feir Thank you for reply.  Sending a message I hope you do get PIP.  Only concern why do you need to pay some one to do tasks out of PIP.?  I thought the money if you do get on other essentials that can help you improve your life  I do know there are charities out there who would be willing to assist.  I know that myself.  Also it is your choice what you wished to do that is all.

    I understand that you are not good mentally.  I hope you be OK.
    Community Champion
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  • monka
    monka Community member Posts: 8 Listener
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    For us the extra cost of heating is very financially draining,  my son has a neuromuscular condition and cannot move independently, he is an electric wheelchair user.  During the winter we have to have the heating on most of the day as without it he cannot use his hand or his fingers on that hand because they become cold.   My son user his hand to click on the mouse enabling him to use on on screen keyboard.  Without this he would be totally isolated.  Despite having the heating on all day my son wears his lightweight padded cost at all times indoors.  Our heating cots around £100 per month which is hard for a pensioner and a person on disability benefits to keep up with.  Chewing and swallowing is also an issue as I have to buy and cook expensive food like fish as meat is too difficult to eat,  we have to go everywhere in our adapted car and the cost of fuel is also very prohibitive.  I have recently found the cleaning and gardening have become too much for me because of age and caring duties and I am now seeking to find support in these areas by paying someone else to do them. 
  • anaqi
    anaqi Community member Posts: 52 Courageous
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    My husband works full time so I have to pay for everything.

    It costs nearly £10 a week for my pre-payment certificate and all my supplements (recommended by my consultant but not available on the NHS).

    My dental bills are huge as I wasn't diagnosed with Sjogren's until it had caused a lot of damage to my teeth.

    I have to pay for annual sight tests to make sure my medication isn't damaging my eyes.  My prescription often changes so that means two more pairs of glasses every year.

    I had to pay £800 for my own second hand powerchair as I can't propel my NHS manual chair and they won't assess me for a powerchair as I can walk on crutches inside my home.

    I have to pay hundreds of pounds in train fares to see my consultants in London as I have several rare conditions which my local hospitals are not experienced in treating.  I don't qualify for hospital transport and it would be too tiring for me to travel 150 miles each way in the back of an ambulance.

    I require supportive footwear which is more expensive than normal shoes.

    I have been assessed as needing a stair lift but I don't have one because I was denied a DFG and we can't afford to buy one.

    The list of additional costs is endless!
  • feir
    feir Community member Posts: 397 Pioneering
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    @thespiceman thanks. i mean the tasks that i'm not able to do and my kids aren't able to either, there is a little bit of stuff needed there and it's getting urgent now. also i was hoping to pay someone to see about what's wrong with me but since i ended up in hospital i have been seen pretty fast by specialists and so i am not panicking too much about that now and feeling confident they know what they're doing.my GP is a pretty poor service unfortunately and i was relying on them previously..
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
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    @feir unfortunately it is very easy to overreach what the GP's can handle.

    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.
  • amiss
    amiss Community member Posts: 2 Listener
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    So, I've just won my battler with the DWP & PIP & what a degrading & appalling process it is! My assessment was a complete farce & had nothing to do with being disabled, in fact I might have well not been their for all the good it was. It was made as difficult as possible to get to the assessment centre in some hovel of a town which was virtual impossible to get to by public transport even though I had asked for a town nearer me which was an option offered when filling out the form. Also, when when the CAB helped fill out the form they didn't hold out much hope that I would be successful, friends who has been through it said the & a friend who worked for the DWP also said I would fail........& guess what I did. I rand tithe DWP asked to to appeal 'you can't appeal you have to go for a mandatory reconsideration' here again made as difficult as possible for the claimant, to me its appeal but never mind. I asked for my report, well I have never in all my life read such an appalling report of utter rubbish just full of cut and paste statements. For example. Due to my accident I suffered spinal cord damage & has left me with a number of complex health issues one of which is incontence. So the box agreed that I had this problem the next box said I didn't but this is the real kicker 'I attend main stream school'? I attended school over thirty years so for the life of what has that got anything to do with being disabled? My whole report was just full of this rubbish & that's what I was failed on.
    Now interestingly having appealed on, all the areas that I should have been awarded PIP on all of a sudden yes your right you win.
    Two final points on this. Firstly, I was assessed by Independant Assessment Services but my report was on Atos Healthcare headed paper, correct me if I'm wrong but didn't Atos loss the contract when I raised this issue with assessor she felt it was very strange more like some corupution going on here. Then the assessor said she was quitting that day because she no longer work in a system that discriminated against disabled people.
    Secondly, I was speaking to someone who was an assessor who told me that he quit after eight weeks as he was fed up with his reports being changed so that claimants failed. This whole PIP process stinks & is purely a cost cutting exercise & to punish the disabled for being disabled.

    Orginally I was awarded DLA for life, this helped play for certain items for my incontence, dentist, medical equipment & help with the running of my wife's car for running me around. However, the lower PIP award has now made life very difficult as it come nowhere with the DLA that I used to get. I had to retire on compulsory medical grounds at fityfive & live on a small pension DLA also helped to top up my pension to also pay bills as my pension nowhere covered them. We now find ourselves in a financial position that is very difficult. Where as my pension & DLA covered all our outgoings my wife now has to top up to the point now on a five week month we have no money at all.
    I wrote a three page letter to my MP (Tory one) & told him exactly how his parties policy towards the disabled is hurting us & I pulled no punches. He thanked me for this & said it gave him a better understanding of the impact but as I told him when I saw him that he's not going to do anything about it as being a new MP he wants to climb the greasy pole & wants his overseas junkets which already one overseas visit.
    Saddly, many of us disabled will have to grin & bear it & realise that we are currently stuck with this policy & the tories are not going to change their policy. 
  • MerlinaOctopus
    MerlinaOctopus Community member Posts: 1 Listener
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    There are lots of things.

    Having to pay for fixed term pre-paid rent contracts or guarantor fees as landlords don't trust benefits.

    Needing to pay more than £1500 for an adapted tricycle (which is serious transport not a recreational item), and then having to pay £10 a month to insure it as it is over normal household insurance cost.  Plus having to have a shed to keep it in as it is far to big to be stored inside.

    Having to pay twice the amount of rent that most people my age would pay because I need self-contained accommodation.  The accommodation I am living in is still unsuitable (difficult stairs) and this is one of the main things that hinders my working: truly suitable accommodation would probably be three times the normal cost.  (Benefits do not help me with this as despite the fact that I'm visually impaired and have a severe anxiety disorder, I'm still expected to be able to share a house with strangers).

    Needing to pay for adaptive equipment such as good quality ANC headphones (I paid VAT on those!) and long canes and similar.  I find it difficult to claim things even when they should be provided or when VAT should not be charged because the admin tends to be so complicated.  The ANC headphones are the single most essential item I have, and have sometimes been the only thing that's kept me out of hospital with an anxiety disorder.  They cost several hundred pounds but have lasted two years so far.  Also a continuous supply of earplugs and a white noise machine (though I'm fine with a basic one, thankfully). 

    Backboards and an ergonomic chair with full neck rest (thankfully I had one provided at university and it has lasted).  Backboards are not that expensive given how well they last, but the ergonomic chair cost most of £1000.

    Having to pay for train tickets only with a railcard, because I find it difficult to book the journeys and get the discounts.  Friends of mine are often able to travel much more cheaply than me, though this is lessening now we're out of the age bracket for the young persons railcard and I still have the disabled person's railcard.

    Needing to pay for private healthcare due to the failure of the NHS to provide adequate mental health services.  In actual fact this is mostly impossible, meaning that I have had a condition that is usually treatable for ten years, without being able to access adequate help.  My parents paid for the assessments that made diagnosis of dyspraxia and VI possible (it is neurological and can't be picked up on ordinary eye-tests).

    Needing to pay for taxis to reach medical appointments a lot of the time.  In practice I can't afford this either and struggle to get ordinary care as a result.  Because I am not completely housebound receptionists and medical staff who don't know me are very judgemental about coming to me.  (Though I should acknowledge the incredible understanding of a recent medical person who came repeatedly to the surgery I can reach at a time that suited me despite the fact she doesn't usually work there).

    Paying more for food because I cannot cook very much, and because I am disorganised as a result of my neurological problems and tend to have trouble using things up.

    Paying to replace things that get lost or broken due to my disability.

    Being unable to claim expenses due to inability to do admin - this was a problem in education where I had to claim things like a taxi allowance or for food receipts, though not so much now.  (Mostly my mother did the taxi allowance, so it wasn't as bad as it could have been in practice; only the odd lost receipt.  If she hadn't I wouldn't have been able to go to lectures most of the time).  The same goes for benefits (I'd be on the streets without family help with benefits' claims) and is likely to go in future for losing tax allowances I'm entitled to because they are too administratively difficult to claim.

    I should add that there are a few things that are cheaper.  Because I am visibly disabled, museums and zoos and theatres  generally let me in as a concession, or let someone in with me free as a carer, and I have a railcard and a bus pass because I can't drive.  There are probably a few other similar things.  However, once you've added in things like extra rent, I don't think it comes close to offsetting the overall extra costs.  I'd guess life is (very approximately) somewhat less than £100 per month cheaper, and a good few hundred pounds more expensive.

  • Lynty
    Lynty Community member Posts: 2 Listener
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    Hello people...I am annoyed that the disability blue badge has increased to £10 in the last few years but now the parking permit for car parks within Torbay Devon has gone up to £40 per year plus £20 for any alteration in that year i.e. new number plate... these prices are not in line with inflation and are too expensive for someone like me who is just on a state pension.
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