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

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124

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  • thespiceman
    thespiceman Community member Posts: 6,379 Disability Gamechanger
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    Hello New one pay for garden collection of waste.  £30 for  a year, plus that's increasing again.     I can see that being so much that people just wont bother and start to damage the environment.  No one wants fly tipping but it will happen.

    Councils anyway mine put bins out struggle even though I was denied assistance.  Never turn up on time.  Small hidden charges for refuse disposal becoming the norm.  Last big clear out per item £10 cost me £50 for a settee.  Cost per cushions and seats.

    Found out my gardener has a brother who has a trailer for the tip.  Licensed so I asked him.  He did it for me removed unwanted rubbish, household, electrics etc.
    I was worried I thought he might just dump it but my gardener told me he and him went to tip and I know they did. 

    I wonder though how many people in community have mounds of unwanted stuff that needs to be removed and it will cost a bomb.

    Paid for his fuel.  Rather pay him than council.

    Out door storage is full again.
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  • Nystagmite
    Nystagmite Community member Posts: 596 Pioneering
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    Victoriad said:

    If I were you I would try and apply for PIP and this benefit award qualifies you for a 25% discount in Council tax.

    No it doesn't. You get a 25% discount if you live alone. You can also get discounts if your house has been adapted, you live with a full time student or the adult you live is classed as severely mentally impaired.
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  • tarjia477
    tarjia477 Scope Member Posts: 1 Listener
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    I have been disabled since 1991 and have suffered incontinence that l have struggled to fund the costs of pads / sheets/ wipes/ nappy sacks for. The incontinence have got considerably worse now l am in my sixties. It literally is a choice between do l eat or manage on cheaper and not very good pads. My doctors have always been appalling , preferring to just ignore me. I have fought the last few weeks to find out where the nearest incontinence clinic is and it fell to someone else to tell me and the next clinic was a month away. Do other people find that their doctors surgery just do not listen and seem devoid of common sense?
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  • foxuk
    foxuk Community member Posts: 103 Pioneering
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    tarjia477 said:
    Do other people find that their doctors surgery just do not listen and seem devoid of common sense?
    Our previous doctor was very 'frugal' with anything that spent his budget...

    You could try Bullen Healthcare ( http://www.bullens.com/ ) who should be able to give advice.

    When you then contact your doctor ALL the work has been done and all they will have to do is authorise the prescription.

    I would also demand an appointment with a consultant. 

    My wife is catheterised (and so was my father) the absolute worst treatment we have had was when my wife was released from hospital. A nurse was sent out to try and convince us that she could manage without a catheter..... She had been catheterised in hospital as they couldn't manage her condition without cauterisation. That's with a full ward of able bodied nurses and a hoist. I was supposed to manage with a slide board and am Disabled myself (I get enhanced rates of PIP for both Care and Mobility). Some NHS workers are plain evil and see only their money saving spread sheets.

    If you still don't succeed change your doctor, it worked for us!

    Good luck.

    Jon
  • feir
    feir Community member Posts: 397 Pioneering
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    tarjia477 said:
    I have been disabled since 1991 and have suffered incontinence that l have struggled to fund the costs of pads / sheets/ wipes/ nappy sacks for. The incontinence have got considerably worse now l am in my sixties. It literally is a choice between do l eat or manage on cheaper and not very good pads. My doctors have always been appalling , preferring to just ignore me. I have fought the last few weeks to find out where the nearest incontinence clinic is and it fell to someone else to tell me and the next clinic was a month away. Do other people find that their doctors surgery just do not listen and seem devoid of common sense?
    i've been really lucky since i got admitted to hospital, the first specialist i saw had an idea what was actually wrong with me so referred me to someone else more appropriate to treat me and this consultant has found out what's partially wrong with me. he also referred me to an incontinence consultant and told my GP to refer me to the rheumatologist (which they were supposed to have done in Oct of last year). this all happened within the space of two months and trips to my GP (going on for much longer) only helped with painkillers and not much else.

    i like the advice above, hope you get sorted. there was a discussion in parliament about pip this week and i did mention that incontinence products are an extra expense and thought we should get help paying for those because as it is you do not qualify for any help with incontinence costs if you can change yourself. i get that you might need help to pay for someone to come and change you but like you say the products do not come cheap either.
  • Boychris
    Boychris Community member Posts: 19 Connected
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    Boychris Posts: 16 Whisperer
    February 3 edited 11:45AM in Talk about finances
    Being once able-bodied then suddenly struck down with a disability through Sickness, accident or through whatever means, Will and in my case caused untold stress, anxiety in many cases it will cause depression.
    But I have asked this following question and have never managed to get a full straightforward honest reply to, and that is  Why does the cost of everything in which, the disabled person has to use or need to adapt to enable us all to live our lives without further injury and in comfort to maintain a level of independence and which is acceptable to the user and others around us.
    Also one has to ask the question why do some companies who offer products or service to the disabled find it acceptable to vastly inflate prices purely because the need/ requirement is there for the service or product users. A Typical example, a Disabled person requiring the use of a mobility scooter/wheelchair whilst on holiday I have found that companies are demanding on average £65/85 per week or more with a £200 deposit.Add this to the cost of a holiday and the cost of the overinflated travel insurance we have to buy this could double or even triple the holiday cost.
    In reality looking at this subject broad spectrum, I have found that I as a disabled person, it does not matter what the requirements the cost a have always found to be higher, than the cost that an able-bodied person would pay for a similar product or service without the disabled implication attached. for example, a 2-week holiday insurance  to Europe :
    Able Bodied cost (age say 60) Cost ON Average £30-40 for a holiday cover.
    A disabled person, wheelchair user, with history of say heart attack or stroke(age 60)
    Cost of travel insurance for a 2 week holiday ranges from £155 to a staggering £389. Fact. even if you tell the company you have had no further health episodes for the previous 5 years, that will be our cost still. one questions as to why because it does not include the wheelchair that an extra cost. 
    Time after time I have found the cost for goods and services inflated because of disability and believe that it is the time that Local or even national Government should take a stand and regulate prices and fees for goods and services for the disabled. V a t relief is available to the disabled providing you meet certain criteria, or have certain health conditions, but the cost for services i.e alterations to your living Accommodation, or paying your council care bill is not Why??
    Has anybody else found or thought about this subject,  my mind I do believe we the disabled are getting ripped off, or mislead,  do you agree that this needs more regulation.

    Read more at https://community.scope.org.uk/discussion/40031/cost-of-disabled-equipment-and-improvments#YlxQ9uFvjm5gmFq8.99
  • Boychris
    Boychris Community member Posts: 19 Connected
    edited February 2018
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    I wrote a piece just the other day 
    Cost of disabled Equipment and improvments
    and was lead here by Pippa, well well it does shock me somewhat , as many seem to think the same as me, We get branded with the word DISABLED, and we sit back and watch cost spiral, if something needs to be done which we cannot do ourselves or we need adaptations want a holiday indeed most things to make our lives a little easier than we are going to pay for it, and it is those companies who are raking in profits at the expense of our disabilities. is it fair or not, do you believe that both Local and National Governments should have a department set up to ensure equality should be for all.
  • TheKLF99
    TheKLF99 Community member Posts: 17 Connected
    edited February 2018
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    I've found a lot of entertainment venues offer discounts for disabled people.  Some of these don't always advertise a disabled rate so it's always worth to ask on the door - the only exception to this is usually the cinemas as for the cinema you usually need to buy a CEA card to get buy one get one free on movies (or it's a Wednesday and you have the Compare The Meerkat offer) - I like films but I've actually never seen the point in a CEA card as normally when I go and see a film I go and see it on my own and so it would be just a waste to buy but it depends on how you want to see films - I also volunteer at the Regal in Tenbury as a projectionist so get to see a number of films anyway - although yesterday I did actually pay to go and see Lego Ninjago at the Regal even though I already bought the Blu-ray 3D the other week - it was worth it and as the regal is only a small local cinema rather than a multiplex it's prices are very cheap and it was good to see on a big screen and support the local cinema too.  

    Some places offer a buy one get one free ticket to the venue - the idea is that you and a carer go free, although even though the carer gets in free you don't suddenly get handcuffed to the carer to go round the venue.  Quite often both you and your carer are free to look at the venue on your own - which with some people with autism they find it more relaxing to be on their own but still have a friend nearby for help if they need it.  Also the person you chose as a carer usually doesn't have to be a carer in a professional manner, most places will allow a friend to be classed as your carer for entry (or in some cases when we go to an event as part of Shropshire Autonomy we sometimes buddy up with other people in the autistic group for entry.)

    Also if your going to somewhere as a large group - ask if they do group discounts and find out what the rate is and what the minimum amount of people you need.

    If you live in or near Telford apply for a TLC card (they're free) - this is a card that allows discounts at certain venues throughout Telford - you can also apply for a disabled concession on the card which gives bigger discounts in some situations you have to live in Telford to get the concession, but if you fit into section 2 of their requirements then you can actually apply for the discounts even if you live outside of Telford and Wrekin, one example of the discount is if you go ice skating you only pay skate hire fees, and lessons are a lot cheaper.

    Some theatres allow you to watch shows at concessionary prices, some advertise them as OAP rates, or concession, or student and they still apply them to disabled as well - it's always worth asking at the box office first before booking a ticket.  Sometimes though these venues don't offer the concession prices online and so you'll need to either phone them or go into the box office to offer the lower rate and even if the online service offers a lower price quite often they'll match it.

    If you're going out for a meal some pubs offer two for one deals (quite a few Marstons offer this) - this is good if you've got an even number of people going with you, but sometimes if you're just on your own or have an odd number of people then it can sometimes mean that one person has to pay full price, which may not be as good a deal, in these cases you might be better to find pubs like Greene Kings Hungry Horses instead which tend to do offers more on courses rather than meals so you sometimes get 2 courses for £8 instead of 2 meals for the price of 1 which if the meals are £10 each if you have two people there then you'd be getting a meal at £5 each, but if there is just one then if you went to the other pub you'd get 2 courses for £8 as opposed to one meal at £10.  Also some places offer all you can eat menus, and some offer all you can drink soft drinks (like Nando's).  Bear in mind though that these places might seem really good value sometimes, but think before you buy - if you buy a bottomless coke from Nando's are you likely to drink through £2.50's worth of coke in a meal - when Asda is selling 2L bottles of the stuff at £1 - you'd have to drink 5L of coke before your in profit - ok it's a bit different sitting in Asda buying a coke than having one with your meal but in all reality coke syrup is cheap which is why some restaurants now offer an "all you can drink policy" because they know your not going to drink more than it's costing them, and even if you do someone else might not. 

    Also if your out and about in the evening and want a quick meal, usually if it's before seven most supermarkets have their restaurants still open, and usually after 5pm they have deals on their meals as they want to get rid of the food they've cooked before they shut.  They can quite often be a lot cheaper than even going to somewhere like McDonalds (and the food can quite often be a lot better!)
  • TheKLF99
    TheKLF99 Community member Posts: 17 Connected
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    Also one other thing is try local people to do stuff for you - if you need an adaption to your home due to your disability it's very easy to just run off to some massive company and trust their quote is ok, but recently we had a shower installed in our house - we went to a major firm and asked them for a quote - their advert stated they would give a quote.  The guy came out all we wanted was the taps on the bath switching for a shower mixer as we considered that was the cheapest option as we're on economy 7 the water heats up at night so it was easier to use the water that's already heated rather than get an electric shower and heat it up again!  When the guy from the professional firm come out he looked and he started saying we need this pump here, that pump there, extra pipes running throughout the house, he said it could take a couple of weeks to do in total and you'd be looking at about £5,000 to have a shower installed - we told him to take a hike.  We called a local guy in, he said to us give us a tenner and about 30 minutes and those taps will be on - we actually give him £20 'cos we thought a tenner was a bit too cheap.  Thirty minutes later, taps were on and the shower head was even attached to the wall.  Ok it is a bit troublesome to get the temperature right without the pump, but it works and it cost us a lot less than £5,000 (and the taps themselves only cost £20 in the sale at Homebase - so £40 for a shower fitted).

    And one finally thing is - save money on cars - if you're on the motability scheme and you take one of their cars - just total up how much money your spending.  Yeah ok you get a nice new car for three years that is repaired, services, mot'd insured, etc but they take the entire motability rate off you - which when my mum used to have a motability car was about £220 a month.  Now just calculate that up - in 1 year that means you are paying them over £2,600 for a car.  We bought a 55 plate Vauxhall Zafira four years ago for £1,200 - which left £1,400 available in the first year for repairs, insurance, mot, etc and then £2,600 we also take it to a local garage who doesn't rip us off like the big main dealers (we use Gatechange in Tenbury), also as we pay the road tax on it rather than register it disabled we are able to use it fully as a family car too and aside from the insurance and wear and tear not really worry about the mileage we're doing either.  We've had our car for four years now and have done over 60,000 miles in it - not bad considering when we got it, it had 1,000,000 miles on the clock!  Sure we've had to pay for it to be repaired a few times but at present we've calculated that within those four years we've probably paid about £4,200 in repairs, tax, insurance, breakdown cover and buying the vehicle, etc (and some of that was because we initially took it to a dodgy garage for a repair which they broke more than they fixed on it - and also we drove it into a flood - oops!) but if we'd have gone with motability we'd have paid them about £10,400 we've actually saved over £6,000 by not using motability!
  • TheKLF99
    TheKLF99 Community member Posts: 17 Connected
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    oh and nearly forgot - one other thing - if you have certain disabilities that need you to use a lot more water than normal and you're on a water meter - look up the WaterSure scheme as it caps your water price.
  • TheKLF99
    TheKLF99 Community member Posts: 17 Connected
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    tarjia477 said:
    I have been disabled since 1991 and have suffered incontinence that l have struggled to fund the costs of pads / sheets/ wipes/ nappy sacks for. The incontinence have got considerably worse now l am in my sixties. It literally is a choice between do l eat or manage on cheaper and not very good pads. My doctors have always been appalling , preferring to just ignore me. I have fought the last few weeks to find out where the nearest incontinence clinic is and it fell to someone else to tell me and the next clinic was a month away. Do other people find that their doctors surgery just do not listen and seem devoid of common sense?
    I am incontinent too - I've had incontinence since birth due to a weak bladder.  Initially I did used to buy my own pads until a friend told me to get an appointment with the incontinence nurse.

    I initially went to see the nurse and they put me on a prescription for pads, although the pads they prescribed were very different to the ones I'd been using, I'd been using a mixture of DryNites (even though they have an age range of 15 they actually do fit quite wide - I'm 33" waist and they easily fit me) and adult taped nappies depending on what I could afford at the time.

    Initially they give me some of these Tena pad things that go into stretchy underwear and they were like useless, they'd constantly slip out the underwear or leak, they then changed them to the pant type which initially I thought would be much better as I'd been using DryNites still at night with the pads in the day.  The pull up underwear for adults though is nowhere near as good as DryNites, the sides are too weak compared to DryNites (I don't know why though as DryNites and Tena are both made by Kimberley Clark - surely if they can get it right for bedwetting pants they can get it right for adult incontinence pants!)

    Eventually they switched me on to the taped nappies which work a lot better.  They work better because things like the pants are designed for one hip size, and unless you've got that perfect hip size they are too lose.  The pads on their own don't cover all around so sometimes when sitting or lying it can leak easily.  Where as taped nappies cover all around, the only time they seem to leak is at night, and so what I do at night is I usually use a DryNites and cover it up with the last adult nappy I've worn with an extra pad on the bed (and plastic pants over the top), most of the time the DryNites doesn't leak but if it does the adult nappy is there to catch any leakage, and then the bed pad as a final resort.  I know it's a lot of padding at night, but it keeps me dry.

    They did try switching me back to the pads in underwear at one point but I put in a lot of complaints about them not being suitable and they changed me back - it actually worked out more expensive anyway to switch to the pads as I use about 3 nappies a day and one at night, where as I was using more like 6 of these pads a day as I was constantly scared they would leak if I left them on too long.

    To order them I have to make sure I order them about 2 weeks before I run out, sometimes I have missed the deadline and when that happens I sometimes go up to Incontinence Choice who are in Telford at Stafford Park 18 and buy some spare ones from them - they are about the cheapest place that sells incontinence pads I've found, and if you actually go into their shop they usually have a "bargain bin" in the middle which quite often has some useful things in for £1 - sometimes they have pads that are the right size in there (they might have taken one out for a sample or it might be ones they are discontinuing), also sometimes I've got bed sheets from them for £1 at one point I picked up 4 plastic bed sheets from them for £1 each although I was just really lucky that day as it's very rare they put bed sheets in the £1 bargain bin, and other times I've got plastic pants from the bargain bin too.  Plastic pants are quite handy to have from there as they always go over time.
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