Whoever does the captions needs to check spelling and grammar - there are a bunch of errors. Hard to say whether it's better or worse than prior vids because I don't normally watch with captions on.
Hello Jen! Recently my tires were consistently going flat. Mobility shop wanted 125 US dollars to put the solid tires I had purchased thru the manufacturer for 55 US. Yep, that's only labor and they said they would give me appointment in 2 to 3 weeks I explained that I was flat and now holding no air. It didn't make a difference. So! I called a bicycle shop and they man handled the solid tires on without a stretcher. They saved me bc I can not walk and only charged 20/tire for labor and completed them right away. They saved my mobility! Wonderful people.
I use a power chair mostly but good to know, if I need wheels changed on my manual wheelchair I will fining a bicycle shop instead. Believe me when those tires ware out I will being looking for a bike shop to put the new ones on if not getting a family member to help.
@wheelieblind Afternoon. Speaking with the bike shop they said they will also repair my power chair tires. As long as I supply the materials they will help with it, bc they typically don't carry the sizes for our chairs. I haven't had to use them for the powerchair yet but will when needed. As far as supplies I have found buying directly from the manufacturer is a small fraction of what I was being charged at the mobility store. I wish you well and years of savings going this route. Keep Smiling
It always amazes me when people think that all disabled people have tons of money. We had to fill out a census last year in Australia and one of the questions was asking about yearly income. There wasn't even a box for me to tick because I don't even get minimum wage.
I have to pay a fortune on taxi trips as I can’t drive. I’m legally blind as well as a wheelchair user. I can’t get the bus independently and very rarely have someone to help me to go out so taxi is my main way of transport Also have to pay a lot on keeping warm and also blocking out noise like fireworks as the sound and vibrations actually cause me pain So many don’t realise how much it costs to have a disability There should be more people like Gem making able bodied people and even the authorities aware of these challenges we face
NHS gives you 120 catheters but only 30bags and 40 wipes?… you do the math my spend on baby wipes alone each week is huge! I also order puke bowls, each month. Then you think about costs for a Gluten free, dairy free, low histamine, low FODMAP diet. Plus electricity for my wheelchair.Fuel for our WAV is more because it’s bigger and has a wheelchair in it so eats fuel. Extra heating! It quickly adds up and this is only a fraction of what I need.
My disabilities are more of the invisible sort. ADHD/Autism, chronic fatigue, pain from arthritis, plus my lungs aren't super great after having had COVID twice. My extra costs include: I pay for Walmart+ & get groceries my delivered, I use DoorDash (with DashPass) if I don't have energy to cook or go out. I often make coffee & tea at home, but sometimes it's more convenient to get one on my way. Especially due to time blindness. I buy pre-cut veg & pre-portioned foods to make cooking less daunting. I also buy noodle bowls & snacks for AuDHD burnout days. The things I need that non-disabled people would see as "lazy & unnecessary" are many, and the cost is crazy. The most taxing part (pun intended) of hidden disability is telling Karen's I actually am disabled. I don't care if they don't think I “look disabled”. 😢
I've experienced a lot of crap from neighbours and complete strangers too as I look well but have a non-crippling arthritis. Pain and fatigue can be debilitating even if you are not crippled.
Enjoyed this one. I use a powerchair a lot of the time. Charging or battery replacement etc is not cheap. So much as gone up, specially the heating costs. Well done on highlighting such issues.
It makes me sad how many places are not accessible. We visited London with a double stroller and just navigating the Tube stations that have access is a challenge. I understand the history of the places is why but having to figure that out for everything must take the fun out of a lot of things. So glad you found a good way to enjoy the fireworks.
wheelchairs cost so much, even on the nhs they usually offer you a basic hospital one, i was told i could get an active chair on the nhs but then a week later they phoned saying they can't give me it because i can't drive?! i need the lightest chair possible so my shoulders don't dislocate but nope i don't drive so i can't get it. luckily i have lots of pip saved up but some people don't! some people dont have the money for necessary mobility aids it's so upsetting
I suppose I should add to the list: house cleaning (2× a month), transportation (lifts, public transit etc...), shopping for groceries (delivery fees), home health when needed, .... I can appreciate your comment regarding being unable to shop for better prices. When there is a need you end up paying whatever the sticker price in. Whether it's inaccessible or do to my energy level unable to keep up. A valuable video this one is Jen. Ty
For Halloween this year: I went as a witch / "potions professor" in some Hufflepuff gear to work - I'm a chemistry professor and we had lab that day. Later, I was just an 18th century woman in 18th century garb I made myself. 😊 For hidden costs, tell me about it! To see someone competent, almost all my providers are now at least an hour from home and I have to pay for parking for most of my specialists. Plus, insurance I do have (USA) isn't the greatest when it comes to tests that are actually beneficial for me and my diagnoses. I can certainly tell costs have gone up.
I understand the heating costs. My family work from home so we have to have the heating on all the time. Especially as my mum gets really sore if she gets cold.
Im always using a heat blanket or heat cape for pain and because of circulation. Also not all aids are covered through the nhs and we have to pay out of pocket for them x
Food. Personally food is a big problem for me because of my nausea, energy levels and loss of appetite. it becomes a lot more expensive when you throw out food because you flet too sick to eat it. order take out because you were out of spoons, so on and so forth.
For anyone reading "because you were out of spoons" and thinking "just wash some!" I'm 98% sure the commenter is using the metaphor for energy expenditure when you have a disability/chronic illness. The analogy goes that you wake up each morning with a set number of "spoons" and once you use one it's gone. Everything you do "costs" a certain number of spoons, including dressing, moving out of your bedroom, using the bathroom, even cognitive tasks like paying bills or reading mail.
I almost laughed hysterically when you bemoaned the cost of your new microwave… I’m medically blind and my combination microwave/ grill/ convection oven that would have cost about £150 if I could have used an ordinary one cost £275 thankfully without VAT otherwise it would have been over £300…. All because it talks… however it’s not brilliant at any of its cooking methods and it’s just as well I live alone as I can’t cook a full meal for more than one person at a time in it. My cheaper/ ordinary slow cookers (I have a family sized one for batch freezing meals and a smaller one to reheat the thawed meals to a safe temperature) have tactile settings so I feel where I’ve turned the dial… but I have to remember what the settings are or use an app to call a sighted volunteer to read the dial to me if I forget… and the heavy pot inside is so awkward to manoeuvre especially to dish up. No wonder I rarely cook from scratch.
I am in a weelchair too and last mont the extra was about over 400 euros. And that is 1! This monht it is bout 6000! Hospital bills and alot more extra
I’m always curious to learn more about the Healthcare system in other countries. I live in the US and know that one of the differences between the US and the UK is the NHS. If my understanding is correct this funds some of the healthcare costs for citizens but as you mentioned not all. Could you do a video explaining what things like prescriptions or mobility aids are not typically covered under that and how that impacts people with disabilities as compared to people without disabilities.
For Halloween, I dressed up as a witch and my husband wore a skeleton shirt. We loved Gem's rocket ship wheelchair. Maybe next year before Halloween, you could do a video on wheelchair costumes. My husband became a wheelchair user 2 years ago, and a lot of the costumes he used to wear are now difficult to wear.
I have cerebral palsey and I do have additional expenses in terms of purchasing medications that are not covered by my insurance such as miralax, Metamucil, Tylenol, moisture drop for my eyes and a few other over the counter medicines. I do also have to pay extra for ADA paratransit service because there are places that i need to go to in the Hartford, CT area where i do not want to risk crossing a major thorofare in a wheelchair. Adaptive clothing is another expense because I want clothing that's easy for me to put on and take off but I still look presentable too when I'm out in public.
Kia ora Gem from Aotearoa/New Zealand. We call the added cost of being disabled here, the 'Disability Tax'. A month ago I was charged $82 for a taxi journey that would normally cost an able-bodied person $52. As a wheelchair user you pay extra for the privilege of using a big van-taxi, a hoist fee and further a debit card fee! The list goes on: supermarket delivery, rubbish collection from your door, $200 for an wheelchair-adaptable table when a camping table (does the same job) costs $40...
My biggest cost feels emotional more than financial right now, as my husband and I are just about managing month to month. But the whole reason we have to manage on his salary and my 1/4 of a 'normal' salary is because of my disability so I think it counts. 'Just about managing' every month is pretty stressful and anxiety-inducing. It's impossible for us to future-proof our budget for things like energy price increases and unexpected household costs so we end up using our small amount of savings for everything. Which I imagine will be problematic long term. But the extra financial costs we are currently juggling (related to my health) each month are: - higher electricity & gas bills as I work from home - more expensive food that is pre-prepared/OK for me to eat on bad days - medications that I can't get on prescription - private treatments for my pain because NHS waiting lists are so long - running 2 cars as it's better for me to drive places than use public transport/walk
Oh, and thanks for the great content as usual Gem! Small question - do you use a prepayment card for your prescriptions? It's £11 a month I think, and there isn't a limit on the number of meds that I've discovered yet lol.
I have two powerchairs, one of which has just cost me a whopping 600 uk pounds for new batteries and tyres, also I have to charge them up every night, plus an electric bed which is constantly on, oxygen and a medical implant which requires charging, I have to pay for my dental work as it's no longer funded by the NHS, opticians the list just goes on. I had to cancel my carer's due to the cost of the energy bills, sorry for the rant 😅 and thanks for your video 👍
VR is useful for disabled people, there's a number of studies. I use one for access to exercise and to travel the world. On the extra costs for the disabled, I think you should mention the cost of care, or limited capacity or hours for work for carers that are related to you. Also added time costs, we need more time to do any activities and that adds to monetary costs.
It is so expensive to be disabled. I'm in the US so our costs are a bit different. We still have the issues of access to medical care, compounded by the expenses of no national health service. Disabled people in the US lose benefits and can be back charged for received benefits if they marry. These things are parroted by politicians as good. Additionally we pay extra for handi-accessible cars and ride services since there is typically little to no public transit- if you live rurally you may never have the option of a ride service and depend on people in your life. Lately I've talked to venues who have been hosting "accessible" events where, in order to have a place to sit or park your wheelchair, you must pay for a VIP or higher priced ticket- you have no choice about where you experience the event. If a person is mobility challenged but able to be ambulatory there is no coverage for mobility aids and they must be purchased entirely out of pocket. In our area there are doctors who won't see patients with complex or ongoing diagnostics- patients must then travel up to an hour and half away to larger cities for care- fuel has been around 3.50usd. Of course we can't forget how the disabled just get walked over and stepped on by budget cuts, lack of accessible buildings and social events, but even in such cases the safety protocols are not for the disabled- we pay in cash and with our safety.
Many of us are single out of necessity, having to abide by the government's benefits rules. I'm having to give up my car to pay for my care. Gem, you should qualify for NHS hospital transport.
Snow plowing in the winter. I go through batteries in my van sooo quickly because of my lift, and I really need a HD one, but it costs twice as much. I ALWAYS have to drive because of my chair... I go through clothes faster, and need a certain type because of the chair and my EDS makes some fabrics impossible (I'm allergic to polyester🙄).. Hot baths keep my pain more manageable.. The list goes on
I’m in my 30’s and have always lived in uk. When I was a kid I remember trick or treating- dressing as a witch. But I don’t remember ever being invited to Halloween parties & we certainly never had trunk or treat like they do in America. Nowadays Halloween is much bigger. I remember in my 20’s going to Halloween fright night at thorp park with college & seeing Halloween parties you can hire online. So Halloween is definitely bigger now. But still not as big as in America.
Mobility aids I've found are more expensive for short people. At 5' tall, I have limited choice of canes or rollators that can be adjusted to my height, unless I want to try hack sawing canes shorter, not so easy with wonky hands and metal canes. The shorter aids are often x 3 the price of normal sized ones and limited selection.
My main costs are doctors, meds and mobility equipment. Also physio equipment for pain relief, heating, supportive shoes / inserts /podiatrists, dentist and hearing aids. I have HEDS and as it is multisystem, and with age I feel like I'm constantly doing maintenance. I have wet macular degeneration and require frequent eye injections. Fortunately the drug is subsidised but ophthalmologists aren't cheap. Since Covid, less is available via public hospitals. I can afford private specialists especially as I quickly rackup a Medicare subsidy due to expenses. I was diagnosed in a specialist public arthritis hospital that no longer exists. Hospitals in my area won't accept HEDS patients in Rheum cllnics, so God help those who can't afford private specialists.
Food is an additional cost when you have to follow specific diets due to a medical condition. Gluten free is double the price of 'normal' food at minimum from what I've found so far.
I live in Kansas city that is in the middle of the US. Halloween normally is really big and we did not have many trick-or-treaters that year and I still dress up and I went as a demon.
I would have more disability related costs if I could afford them. But because I'm not healthy enough to cook and clean and I can't afford to pay someone else, they just don't happen.
I have to pay £75 rent per month to the council despite living with family, not legally being a tenant, being legally and literally disabled and chronically ill, and qualifying for LWRCA. If I could work, I obviously wouldn't mind paying rent. That money the council takes away from me each month could be helping me to eat more regular meals or pay for better healthcare so I might be able to get fit enough to work. But no, the council takes it away. My only income is PIP/UC LWRCA
Luckily, here in Germany, you can get an annual exemption for additional costs from our health insurance. You have to pay a specific amount once a year and you get a card which provides you the comfort to not pay for medical expenses of any kind (for a human, that is). As a disabled person myself, I'm really glad about this.
The cost of being disabled seems to cost us even more each month. I work part time from home for the NHS due to the office i am supposed to be based in, is not fully accessible for me. I have done this for the past 2 years. I also get the full pip. I am not entitled to anything else . I have to pay for prescriptions and dental care. Also do not get anything extra to help with heating, that some people on some benefits do. The only thing i do receive is I do not have to pay road tax on my car which is classed as my mobility car, which i used my savings to buy this. I did pay to get it adapted which does not work for me, so I am having to save up for hand controls to be fitted. I have tried to get help through access to work for this, but they are no help at all. I use a stairlift which is on all the time. I work from home and use extra electricity and gas trying to keep the house warm especially with the weather getting colder. Yes the government do give people on pip an extra bonus but this was only for £150 which does not cover much maybe one months gas and electricity payments. I am hoping this winter is not as cold has last year
Having a cleaner is a big help for me they can do everything in an hour and a half that takes me an exhating weekend to do. Which ones more costly, i have to think about my back lol.
Yes, that is something to consider. Cost is financial. But there are other types of cost too. It also can take me an entire weekend worth of energy to do what an able bodied person would do in an hour. So in order to have any kind of social life, or perhaps to do any kind of crucial life admin (such as sort out medical crap) I might be forced to pay for someone to do a task that should really take a short period of time to knock out, because I can’t do both. Of course if I pay for the cleaner so I can do the life admin, I can’t then afford a social life and I can’t find the energy for that either. Sucks to be us I guess. Then you get a therapist who has the audacity to say we should prioritise self care and that includes mental health. If I had the energy I’d punch them.
Punching people would just result in fines and probably prison resulting in more cost but at least you get a roof over your head and a food brought to the door. 😅
@@elonmust8859 this is very true. It's also noisy and cold though, which is definitely struggle with. So there are downsides....yes, I've thought about it too!😯
Heating, my stairlift, electric bed, CPAP, two powerchairs, electric riser recliner, charging of them all, maintenance of equipment and cost of support contracts, being in the mid wales access to services difficult and have to use england then they won’t travel out I have to go to them. Anything with a disabled label automatic three times the price. Pay extra for food shopping as I have allergies and dietary requirements. Working from home the power cost of running equipment to work, I sit cold and make my conditions worse as I can’t afford the heating on. Don’t go out as I am immune compromised. Medical appointments have to be in England as wales does not cover it, multiple different hospitals, The list goes on
One of the costs of being disabled for me at least is pain relief that is not only NHS or on other health services and another one is groceries. Some disabled people have to have specific types of food i.e. gluten intolerance, lactose etc. My last one is in some countries public transport is not free to disable people.
My powerchair requires a larger van with a ramp. I had to trade in a 16k used van for a 40k used van to meet my needs. Forgot to add the 5k to pay for my powerchair. In the states a 2 hour drive isn't that far. You can actually drive 6.5 hours and still be in my state. My neurologist is a 5 hour drive each way. Texas is a state that you can drive 11 hours and still be in Texas. 😂
Certain members of my medical team, I have to travel 1000 miles to see them because they're 2 states away, and all 3 states (including the one where I live) are wide ones (350+ miles across). Thank goodness that a lot of the trips qualify as "deductible travel expenses", because plane tickets aren't cheap, even on the cheaper airlines (I live in a rural area and the only commercial airport that's within an hour of my house only has only one airline that serves it (thankfully one of the cheaper ones, at least), so I don't have a choice of airlines, or flight times - lots of 4 a.m. drives to the airport and 11 p.m. drives home, in all sorts of weather, and I have another 4 a.m. one this Sunday).
@SnowySpiritRuby I live in the same puddle jump class of airport too with only 1 company serving it. I don't even think my powerchair would fit into the cargo area.
That fact we have limited options for things such as hairdressers, cafes etc is a big cost that should be tackled by governments as we deserve the choice everyone has especially since most have lower incomes and higher l icing costs due to the disability
i just broke my leg brace, the piece that goes under my foot to trigger the knee bend broke off again. i had help to pay for from works health insurance (canadian) plus federal chip in, still cost me over 500 $C. it has broke 4 times so far is clunky, i have to have the wrong shoe size, the shoes wear out quicker. my out of pocket for each time it broke unlike this time was a couple of hundred, and that was while it was under warranty, its now past its warranty and i am now a student i am dreading what is going to happen.
I have no idea how much extra it costs since I got chronically ill, but it's so much money. The US is particularly terrible about it. Need an accessible vehicle? You pay for it. Need a ramp? Unless you meet overly intense qualifications and you have good insurance, you pay for it. You can even be denied for your mobility aid for stupid reasons like you "can" make it to the bathroom so therefore you won't die without it. Or the house you're currently living in isn't deemed accessible enough (as though people know when disability is going to happen to them).
On top of such costs I personally have to pay myself for different joint support that are extremely expensive, special migraine glasses that are so expensive, some medications that are full price, things because I m left handed and very expensive food due to many allergies. Special inputs for my shoes (I can walk sometimes but not always), and expensive stuff like a robot vacuum because I couldn’t keep my place clean otherwise and so on.. Edit: I want to add the COST of our time as well! We don’t get extra hours a day but we are robbed of time for travelling extra far, time for recovery, time to get things done all day long, extra long time for so many reasons and in general more time spent in phone queues and in queues to the pharmacy and so on. And they day time is money… we lose money for the time we NEED to spend extra!
Hi Gem, you mention using electric heaters to save having the central heating on. Electric heaters are very expensive to run. That might not be actually an economy. It maybe similar cost as the central heating. If you are just wanting to heat the room you work in, it maybe cost effective to either fit a gas heater (I am not recomending portable gas heaters) or an airconditioner unit. A/C uses about a third of the power for the equivalent heat from a standard electric heater.
Hi the extra cost is batteries for my mobility scooter and extra washing as I have double incontinence extra cost of buying reusable nappies as the nhs only give you so many and heating bill
Morning Gem, hope you are as well as can be? Whereabouts do you think I should get new tires for my wheelchair? I live on the south coast not too far from you in Brighton
On Hallowe'en I dress as myself because it's my birthday, yay. The NHS Prescription Pre-Payment scheme doesn't save you money it means you fork out a little less on the drugs you need to manage your disabiliy. I have to travel out of my area for my lymphoedema treatment because the NHS trusts that cover my region do not think that my condition is important enough for funding. Fortunately, I am only required to visit the clinic twice a year to have my legs measured for compression stockings, which are bespoke, and made in Germany. Recently, I waited 5 1/2 months for my compression garments to arrive from the EU, my legs change size and shape which means I had to wear stockings that were the wrong shape and had lost elasticity and effectiveness. I find these visits stressful and to attend my numerous hospital appointments I feel I need to use my annual leave from work to keep my employer happy, which is not what it should be used for. Having to keep the house constantly warm during the energy bill crisis has been a nightmare. Excellent vid Gem.
elecric wheelchair need charged every nite month charge for this is about £60 per month, electric bed charge for this is about £30 per month, electric incom and door charge for this is about £90.00 and that is top off £140 gas per month, normal charge for the electric is £80 per month, food £200 per month add that all up £610.00 per month when everyone only pays maybe half off that
My private powerchair, because of the lockdown needs new batteries. They may look like car batteries but, so I can take the chair on planes they need to be FCA? cert batteries are also medical rated and they are an odd side, so it is about £400 for a set. We are looking at a new Motability car, because of my chair all of the low-cost ones are ruled out, and we need to pay for a hoist for my chair. 1 thing we found most (all) electric cars we could not have because the floor over the batteries will not take the weight of my chair, (We looked at WAVs but the battery WAVs with my chair, and 2 people in them take them over 3 1/2 tons, over the about 2 tons for the none battery versions. some UK driving licenses are limited to under 3 1/2 tons cars)
My dad is a fire risk assessor so he tends to schedule jobs so he can get his train tickets / ulez payed for when I have hospital stuff ,, today he did a few in south London because I had neurology ,,
I needed a walk in shower fitted as the stupid little board the hospitak gave me to sit on was dangerous,it was £10.000 !,my parents footed the bill without them we couldn’t of done it.
I smell a Paralympics video maybe haha. Also I love your friends Omeo! Does she have social media? Would love to know how she travels with the Omeo and how she got that lovely mint colour. Want an Omeo so bad myself for camping
Hi gen I have BBS which means I have to use a cane I am also bilnd in my right eye when I use my cane people don't move out the way people don't understand what it's like being disabled
Wow, I was really surprised to hear you don't get free prescriptions as I just assumed you'd be getting Child Tax Credits/UC. Not getting free prescriptions also has other knock on costs too, as you'll, no doubt, also be paying for dentist and full price on eye care too. A shame😪
@@Wheelsnoheels Sometimes whether you qualify for a benefit, or not, just seems so random and unfair. My best friend has terminal cancer and can't work and yet has not had any of the major C.O.L. payments. Just not right.
I do Sometimes. And I’ve defo thought about this. The only issue is the mic. Unless you know if you can get mics for iPhone?? I resurched a while ago but didn’t get much joy. 😵💫
Cost of living crisis is caused by inflationary money printing as a result of deliberate Government policy. Essentially Government is getting larger and more expensive, it runs a deficit and a growing debt which it tries to reduce by devaluing the currency. It’s a hidden tax on all of us. ‘Doing something’ about the cost of living crisis would mean cutting back on public services-including welfare for the disabled. If the Government increases welfare it has a corresponding increase in the cost of living by reducing the value of the pound in your pocket. There are no free lunches unfortunately.
Hasn't your economy almost doubled there?? We've experienced such a huge jump in everything since COVID here in America. So it's no surprise to me that the cost of disabled living has doubled too.
Yep, same in Australia. Lots of whinging about mortgage rate increases to about 6%, from non disabled. Cost of food, petrol, healthcare, electricity have all gone up, though everyone got an elec govt discount.
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I've used a different captioning service for this video what do you think?
Same as the other ones?
They are fine?
No these ones are not so good.
Whoever does the captions needs to check spelling and grammar - there are a bunch of errors. Hard to say whether it's better or worse than prior vids because I don't normally watch with captions on.
I noticed some mistakes. Worse, I'd say.
Hello Jen! Recently my tires were consistently going flat. Mobility shop wanted 125 US dollars to put the solid tires I had purchased thru the manufacturer for 55 US. Yep, that's only labor and they said they would give me appointment in 2 to 3 weeks I explained that I was flat and now holding no air. It didn't make a difference. So! I called a bicycle shop and they man handled the solid tires on without a stretcher. They saved me bc I can not walk and only charged 20/tire for labor and completed them right away. They saved my mobility! Wonderful people.
Agreed. Bicycle shops are price friendly and quick.
I use a power chair mostly but good to know, if I need wheels changed on my manual wheelchair I will fining a bicycle shop instead. Believe me when those tires ware out I will being looking for a bike shop to put the new ones on if not getting a family member to help.
@wheelieblind Afternoon. Speaking with the bike shop they said they will also repair my power chair tires. As long as I supply the materials they will help with it, bc they typically don't carry the sizes for our chairs. I haven't had to use them for the powerchair yet but will when needed. As far as supplies I have found buying directly from the manufacturer is a small fraction of what I was being charged at the mobility store. I wish you well and years of savings going this route. Keep Smiling
It always amazes me when people think that all disabled people have tons of money. We had to fill out a census last year in Australia and one of the questions was asking about yearly income. There wasn't even a box for me to tick because I don't even get minimum wage.
I have to pay a fortune on taxi trips as I can’t drive. I’m legally blind as well as a wheelchair user. I can’t get the bus independently and very rarely have someone to help me to go out so taxi is my main way of transport
Also have to pay a lot on keeping warm and also blocking out noise like fireworks as the sound and vibrations actually cause me pain
So many don’t realise how much it costs to have a disability
There should be more people like Gem making able bodied people and even the authorities aware of these challenges we face
NHS gives you 120 catheters but only 30bags and 40 wipes?… you do the math my spend on baby wipes alone each week is huge! I also order puke bowls, each month. Then you think about costs for a Gluten free, dairy free, low histamine, low
FODMAP diet. Plus electricity for my wheelchair.Fuel for our WAV is more because it’s bigger and has a wheelchair in it so eats fuel. Extra heating! It quickly adds up and this is only a fraction of what I need.
I love Bindi's expression watching you go back and forth with the "rockets".
Hehehe she’s like…whaaaat… 🤍
My disabilities are more of the invisible sort. ADHD/Autism, chronic fatigue, pain from arthritis, plus my lungs aren't super great after having had COVID twice.
My extra costs include:
I pay for Walmart+ & get groceries my delivered, I use DoorDash (with DashPass) if I don't have energy to cook or go out. I often make coffee & tea at home, but sometimes it's more convenient to get one on my way. Especially due to time blindness. I buy pre-cut veg & pre-portioned foods to make cooking less daunting. I also buy noodle bowls & snacks for AuDHD burnout days.
The things I need that non-disabled people would see as "lazy & unnecessary" are many, and the cost is crazy. The most taxing part (pun intended) of hidden disability is telling Karen's I actually am disabled. I don't care if they don't think I “look disabled”. 😢
I've experienced a lot of crap from neighbours and complete strangers too as I look well but have a non-crippling arthritis. Pain and fatigue can be debilitating even if you are not crippled.
Enjoyed this one. I use a powerchair a lot of the time. Charging or battery replacement etc is not cheap. So much as gone up, specially the heating costs. Well done on highlighting such issues.
My biggest expense is mobility aids at minute! Ridiculous how expensive everything is.
It makes me sad how many places are not accessible. We visited London with a double stroller and just navigating the Tube stations that have access is a challenge. I understand the history of the places is why but having to figure that out for everything must take the fun out of a lot of things. So glad you found a good way to enjoy the fireworks.
wheelchairs cost so much, even on the nhs they usually offer you a basic hospital one,
i was told i could get an active chair on the nhs but then a week later they phoned saying they can't give me it because i can't drive?! i need the lightest chair possible so my shoulders don't dislocate but nope i don't drive so i can't get it. luckily i have lots of pip saved up but some people don't! some people dont have the money for necessary mobility aids it's so upsetting
I suppose I should add to the list: house cleaning (2× a month), transportation (lifts, public transit etc...), shopping for groceries (delivery fees), home health when needed, .... I can appreciate your comment regarding being unable to shop for better prices. When there is a need you end up paying whatever the sticker price in. Whether it's inaccessible or do to my energy level unable to keep up. A valuable video this one is Jen. Ty
For Halloween this year: I went as a witch / "potions professor" in some Hufflepuff gear to work - I'm a chemistry professor and we had lab that day. Later, I was just an 18th century woman in 18th century garb I made myself. 😊
For hidden costs, tell me about it! To see someone competent, almost all my providers are now at least an hour from home and I have to pay for parking for most of my specialists. Plus, insurance I do have (USA) isn't the greatest when it comes to tests that are actually beneficial for me and my diagnoses. I can certainly tell costs have gone up.
I understand the heating costs. My family work from home so we have to have the heating on all the time. Especially as my mum gets really sore if she gets cold.
Im always using a heat blanket or heat cape for pain and because of circulation. Also not all aids are covered through the nhs and we have to pay out of pocket for them x
Totally 😵💫
Food. Personally food is a big problem for me because of my nausea, energy levels and loss of appetite. it becomes a lot more expensive when you throw out food because you flet too sick to eat it. order take out because you were out of spoons, so on and so forth.
Order takeout because you are out of spoons 😂.
For anyone reading "because you were out of spoons" and thinking "just wash some!" I'm 98% sure the commenter is using the metaphor for energy expenditure when you have a disability/chronic illness. The analogy goes that you wake up each morning with a set number of "spoons" and once you use one it's gone. Everything you do "costs" a certain number of spoons, including dressing, moving out of your bedroom, using the bathroom, even cognitive tasks like paying bills or reading mail.
I was laughing because I have been in a similar position myself I just brought more cutlery.
Your daughter looks just like dad with the biggest smile! Tell dad I been subscribe for a long time now what maybe years!
I almost laughed hysterically when you bemoaned the cost of your new microwave… I’m medically blind and my combination microwave/ grill/ convection oven that would have cost about £150 if I could have used an ordinary one cost £275 thankfully without VAT otherwise it would have been over £300…. All because it talks… however it’s not brilliant at any of its cooking methods and it’s just as well I live alone as I can’t cook a full meal for more than one person at a time in it. My cheaper/ ordinary slow cookers (I have a family sized one for batch freezing meals and a smaller one to reheat the thawed meals to a safe temperature) have tactile settings so I feel where I’ve turned the dial… but I have to remember what the settings are or use an app to call a sighted volunteer to read the dial to me if I forget… and the heavy pot inside is so awkward to manoeuvre especially to dish up.
No wonder I rarely cook from scratch.
I am in a weelchair too and last mont the extra was about over 400 euros. And that is 1! This monht it is bout 6000! Hospital bills and alot more extra
I’m always curious to learn more about the Healthcare system in other countries. I live in the US and know that one of the differences between the US and the UK is the NHS. If my understanding is correct this funds some of the healthcare costs for citizens but as you mentioned not all. Could you do a video explaining what things like prescriptions or mobility aids are not typically covered under that and how that impacts people with disabilities as compared to people without disabilities.
For Halloween, I dressed up as a witch and my husband wore a skeleton shirt. We loved Gem's rocket ship wheelchair. Maybe next year before Halloween, you could do a video on wheelchair costumes. My husband became a wheelchair user 2 years ago, and a lot of the costumes he used to wear are now difficult to wear.
I really should do that…I get a lot of request for that 🤩
Love that tip about watching fireworks 🎆 Such a great idea!
It’s good too, if you don’t like the loud bangs. 🤍
I have cerebral palsey and I do have additional expenses in terms of purchasing medications that are not covered by my insurance such as miralax, Metamucil, Tylenol, moisture drop for my eyes and a few other over the counter medicines. I do also have to pay extra for ADA paratransit service because there are places that i need to go to in the Hartford, CT area where i do not want to risk crossing a major thorofare in a wheelchair. Adaptive clothing is another expense because I want clothing that's easy for me to put on and take off but I still look presentable too when I'm out in public.
Kia ora Gem from Aotearoa/New Zealand. We call the added cost of being disabled here, the 'Disability Tax'. A month ago I was charged $82 for a taxi journey that would normally cost an able-bodied person $52. As a wheelchair user you pay extra for the privilege of using a big van-taxi, a hoist fee and further a debit card fee! The list goes on: supermarket delivery, rubbish collection from your door, $200 for an wheelchair-adaptable table when a camping table (does the same job) costs $40...
My biggest cost feels emotional more than financial right now, as my husband and I are just about managing month to month. But the whole reason we have to manage on his salary and my 1/4 of a 'normal' salary is because of my disability so I think it counts.
'Just about managing' every month is pretty stressful and anxiety-inducing. It's impossible for us to future-proof our budget for things like energy price increases and unexpected household costs so we end up using our small amount of savings for everything. Which I imagine will be problematic long term.
But the extra financial costs we are currently juggling (related to my health) each month are:
- higher electricity & gas bills as I work from home
- more expensive food that is pre-prepared/OK for me to eat on bad days
- medications that I can't get on prescription
- private treatments for my pain because NHS waiting lists are so long
- running 2 cars as it's better for me to drive places than use public transport/walk
Oh, and thanks for the great content as usual Gem! Small question - do you use a prepayment card for your prescriptions? It's £11 a month I think, and there isn't a limit on the number of meds that I've discovered yet lol.
I have two powerchairs, one of which has just cost me a whopping 600 uk pounds for new batteries and tyres, also I have to charge them up every night, plus an electric bed which is constantly on, oxygen and a medical implant which requires charging, I have to pay for my dental work as it's no longer funded by the NHS, opticians the list just goes on. I had to cancel my carer's due to the cost of the energy bills, sorry for the rant 😅 and thanks for your video 👍
Thanks
I have autism so i often end up spending lots of money on different sensory items.
VR is useful for disabled people, there's a number of studies. I use one for access to exercise and to travel the world.
On the extra costs for the disabled, I think you should mention the cost of care, or limited capacity or hours for work for carers that are related to you.
Also added time costs, we need more time to do any activities and that adds to monetary costs.
It is so expensive to be disabled. I'm in the US so our costs are a bit different. We still have the issues of access to medical care, compounded by the expenses of no national health service. Disabled people in the US lose benefits and can be back charged for received benefits if they marry. These things are parroted by politicians as good. Additionally we pay extra for handi-accessible cars and ride services since there is typically little to no public transit- if you live rurally you may never have the option of a ride service and depend on people in your life. Lately I've talked to venues who have been hosting "accessible" events where, in order to have a place to sit or park your wheelchair, you must pay for a VIP or higher priced ticket- you have no choice about where you experience the event. If a person is mobility challenged but able to be ambulatory there is no coverage for mobility aids and they must be purchased entirely out of pocket. In our area there are doctors who won't see patients with complex or ongoing diagnostics- patients must then travel up to an hour and half away to larger cities for care- fuel has been around 3.50usd. Of course we can't forget how the disabled just get walked over and stepped on by budget cuts, lack of accessible buildings and social events, but even in such cases the safety protocols are not for the disabled- we pay in cash and with our safety.
Many of us are single out of necessity, having to abide by the government's benefits rules. I'm having to give up my car to pay for my care. Gem, you should qualify for NHS hospital transport.
Snow plowing in the winter. I go through batteries in my van sooo quickly because of my lift, and I really need a HD one, but it costs twice as much.
I ALWAYS have to drive because of my chair... I go through clothes faster, and need a certain type because of the chair and my EDS makes some fabrics impossible (I'm allergic to polyester🙄).. Hot baths keep my pain more manageable.. The list goes on
I’m in my 30’s and have always lived in uk. When I was a kid I remember trick or treating- dressing as a witch. But I don’t remember ever being invited to Halloween parties & we certainly never had trunk or treat like they do in America. Nowadays Halloween is much bigger. I remember in my 20’s going to Halloween fright night at thorp park with college & seeing Halloween parties you can hire online. So Halloween is definitely bigger now. But still not as big as in America.
Mobility aids I've found are more expensive for short people. At 5' tall, I have limited choice of canes or rollators that can be adjusted to my height, unless I want to try hack sawing canes shorter, not so easy with wonky hands and metal canes. The shorter aids are often x 3 the price of normal sized ones and limited selection.
My main costs are doctors, meds and mobility equipment. Also physio equipment for pain relief, heating, supportive shoes / inserts /podiatrists, dentist and hearing aids. I have HEDS and as it is multisystem, and with age I feel like I'm constantly doing maintenance. I have wet macular degeneration and require frequent eye injections. Fortunately the drug is subsidised but ophthalmologists aren't cheap. Since Covid, less is available via public hospitals. I can afford private specialists especially as I quickly rackup a Medicare subsidy due to expenses. I was diagnosed in a specialist public arthritis hospital that no longer exists. Hospitals in my area won't accept HEDS patients in Rheum cllnics, so God help those who can't afford private specialists.
Food is an additional cost when you have to follow specific diets due to a medical condition. Gluten free is double the price of 'normal' food at minimum from what I've found so far.
I live in Kansas city that is in the middle of the US. Halloween normally is really big and we did not have many trick-or-treaters that year and I still dress up and I went as a demon.
I would have more disability related costs if I could afford them. But because I'm not healthy enough to cook and clean and I can't afford to pay someone else, they just don't happen.
Travelling for jings I a problem as I have to travel about 3 to 4 hours round trip to get to some hospital appointments
You All, Are So Cool.
I have to pay £75 rent per month to the council despite living with family, not legally being a tenant, being legally and literally disabled and chronically ill, and qualifying for LWRCA. If I could work, I obviously wouldn't mind paying rent. That money the council takes away from me each month could be helping me to eat more regular meals or pay for better healthcare so I might be able to get fit enough to work. But no, the council takes it away. My only income is PIP/UC LWRCA
Luckily, here in Germany, you can get an annual exemption for additional costs from our health insurance. You have to pay a specific amount once a year and you get a card which provides you the comfort to not pay for medical expenses of any kind (for a human, that is). As a disabled person myself, I'm really glad about this.
The cost of being disabled seems to cost us even more each month. I work part time from home for the NHS due to the office i am supposed to be based in, is not fully accessible for me. I have done this for the past 2 years. I also get the full pip. I am not entitled to anything else . I have to pay for prescriptions and dental care. Also do not get anything extra to help with heating, that some people on some benefits do. The only thing i do receive is I do not have to pay road tax on my car which is classed as my mobility car, which i used my savings to buy this. I did pay to get it adapted which does not work for me, so I am having to save up for hand controls to be fitted. I have tried to get help through access to work for this, but they are no help at all. I use a stairlift which is on all the time. I work from home and use extra electricity and gas trying to keep the house warm especially with the weather getting colder. Yes the government do give people on pip an extra bonus but this was only for £150 which does not cover much maybe one months gas and electricity payments. I am hoping this winter is not as cold has last year
Having a cleaner is a big help for me they can do everything in an hour and a half that takes me an exhating weekend to do. Which ones more costly, i have to think about my back lol.
Yes, that is something to consider. Cost is financial. But there are other types of cost too. It also can take me an entire weekend worth of energy to do what an able bodied person would do in an hour. So in order to have any kind of social life, or perhaps to do any kind of crucial life admin (such as sort out medical crap) I might be forced to pay for someone to do a task that should really take a short period of time to knock out, because I can’t do both. Of course if I pay for the cleaner so I can do the life admin, I can’t then afford a social life and I can’t find the energy for that either. Sucks to be us I guess.
Then you get a therapist who has the audacity to say we should prioritise self care and that includes mental health. If I had the energy I’d punch them.
Punching people would just result in fines and probably prison resulting in more cost but at least you get a roof over your head and a food brought to the door. 😅
@@elonmust8859 this is very true. It's also noisy and cold though, which is definitely struggle with. So there are downsides....yes, I've thought about it too!😯
Heating, my stairlift, electric bed, CPAP, two powerchairs, electric riser recliner, charging of them all, maintenance of equipment and cost of support contracts, being in the mid wales access to services difficult and have to use england then they won’t travel out I have to go to them. Anything with a disabled label automatic three times the price. Pay extra for food shopping as I have allergies and dietary requirements. Working from home the power cost of running equipment to work, I sit cold and make my conditions worse as I can’t afford the heating on. Don’t go out as I am immune compromised. Medical appointments have to be in England as wales does not cover it, multiple different hospitals, The list goes on
One of the costs of being disabled for me at least is pain relief that is not only NHS or on other health services and another one is groceries. Some disabled people have to have specific types of food i.e. gluten intolerance, lactose etc. My last one is in some countries public transport is not free to disable people.
My powerchair requires a larger van with a ramp. I had to trade in a 16k used van for a 40k used van to meet my needs.
Forgot to add the 5k to pay for my powerchair.
In the states a 2 hour drive isn't that far. You can actually drive 6.5 hours and still be in my state. My neurologist is a 5 hour drive each way. Texas is a state that you can drive 11 hours and still be in Texas. 😂
😮 I'd heard that before but every time I hear it I'm still taken aback. 😂
@@smilingjacks83yeah it's crazy here. You often need a car with no other option available
Certain members of my medical team, I have to travel 1000 miles to see them because they're 2 states away, and all 3 states (including the one where I live) are wide ones (350+ miles across). Thank goodness that a lot of the trips qualify as "deductible travel expenses", because plane tickets aren't cheap, even on the cheaper airlines (I live in a rural area and the only commercial airport that's within an hour of my house only has only one airline that serves it (thankfully one of the cheaper ones, at least), so I don't have a choice of airlines, or flight times - lots of 4 a.m. drives to the airport and 11 p.m. drives home, in all sorts of weather, and I have another 4 a.m. one this Sunday).
@SnowySpiritRuby I live in the same puddle jump class of airport too with only 1 company serving it. I don't even think my powerchair would fit into the cargo area.
@@orion_13 not to mention it's scary to travel with a wheelchair! They get broken all the time
That fact we have limited options for things such as hairdressers, cafes etc is a big cost that should be tackled by governments as we deserve the choice everyone has especially since most have lower incomes and higher l icing costs due to the disability
i just broke my leg brace, the piece that goes under my foot to trigger the knee bend broke off again. i had help to pay for from works health insurance (canadian) plus federal chip in, still cost me over 500 $C. it has broke 4 times so far is clunky, i have to have the wrong shoe size, the shoes wear out quicker. my out of pocket for each time it broke unlike this time was a couple of hundred, and that was while it was under warranty, its now past its warranty and i am now a student i am dreading what is going to happen.
I have no idea how much extra it costs since I got chronically ill, but it's so much money. The US is particularly terrible about it. Need an accessible vehicle? You pay for it. Need a ramp? Unless you meet overly intense qualifications and you have good insurance, you pay for it. You can even be denied for your mobility aid for stupid reasons like you "can" make it to the bathroom so therefore you won't die without it. Or the house you're currently living in isn't deemed accessible enough (as though people know when disability is going to happen to them).
On top of such costs I personally have to pay myself for different joint support that are extremely expensive, special migraine glasses that are so expensive, some medications that are full price, things because I m left handed and very expensive food due to many allergies. Special inputs for my shoes (I can walk sometimes but not always), and expensive stuff like a robot vacuum because I couldn’t keep my place clean otherwise and so on..
Edit: I want to add the COST of our time as well! We don’t get extra hours a day but we are robbed of time for travelling extra far, time for recovery, time to get things done all day long, extra long time for so many reasons and in general more time spent in phone queues and in queues to the pharmacy and so on. And they day time is money… we lose money for the time we NEED to spend extra!
My horse and I. And my friend and their horse were thing one and thing two ( 3 and 4😂)
I need to buy my portable nebulisers if I want to leave the home.. Not to mention physio to keep pain levels bearable.
Hi Gem, you mention using electric heaters to save having the central heating on. Electric heaters are very expensive to run. That might not be actually an economy. It maybe similar cost as the central heating. If you are just wanting to heat the room you work in, it maybe cost effective to either fit a gas heater (I am not recomending portable gas heaters) or an airconditioner unit. A/C uses about a third of the power for the equivalent heat from a standard electric heater.
Ooo thank you
The eatery you showed was very nice, but crowded. Did you have any trouble getting inside and finding a place to sit?
No, it was pretty quiet when we arrived, and I booked a table 😊
Hi the extra cost is batteries for my mobility scooter and extra washing as I have double incontinence extra cost of buying reusable nappies
as the nhs only give you so many and heating bill
Morning Gem, hope you are as well as can be? Whereabouts do you think I should get new tires for my wheelchair? I live on the south coast not too far from you in Brighton
I recently went on vacation, and accessible hotel rooms are more expensive as well
On Hallowe'en I dress as myself because it's my birthday, yay. The NHS Prescription Pre-Payment scheme doesn't save you money it means you fork out a little less on the drugs you need to manage your disabiliy. I have to travel out of my area for my lymphoedema treatment because the NHS trusts that cover my region do not think that my condition is important enough for funding. Fortunately, I am only required to visit the clinic twice a year to have my legs measured for compression stockings, which are bespoke, and made in Germany. Recently, I waited 5 1/2 months for my compression garments to arrive from the EU, my legs change size and shape which means I had to wear stockings that were the wrong shape and had lost elasticity and effectiveness. I find these visits stressful and to attend my numerous hospital appointments I feel I need to use my annual leave from work to keep my employer happy, which is not what it should be used for. Having to keep the house constantly warm during the energy bill crisis has been a nightmare. Excellent vid Gem.
elecric wheelchair need charged every nite month charge for this is about £60 per month, electric bed charge for this is about £30 per month, electric incom and door charge for this is about £90.00 and that is top off £140 gas per month, normal charge for the electric is £80 per month, food £200 per month add that all up £610.00 per month when everyone only pays maybe half off that
My private powerchair, because of the lockdown needs new batteries. They may look like car batteries but, so I can take the chair on planes they need to be FCA? cert batteries are also medical rated and they are an odd side, so it is about £400 for a set.
We are looking at a new Motability car, because of my chair all of the low-cost ones are ruled out, and we need to pay for a hoist for my chair.
1 thing we found most (all) electric cars we could not have because the floor over the batteries will not take the weight of my chair,
(We looked at WAVs but the battery WAVs with my chair, and 2 people in them take them over 3 1/2 tons, over the about 2 tons for the none battery versions. some UK driving licenses are limited to under 3 1/2 tons cars)
For Halloween I dressed up as a “Freudian Slip”😂
My dad is a fire risk assessor so he tends to schedule jobs so he can get his train tickets / ulez payed for when I have hospital stuff ,, today he did a few in south London because I had neurology ,,
I needed a walk in shower fitted as the stupid little board the hospitak gave me to sit on was dangerous,it was £10.000 !,my parents footed the bill without them we couldn’t of done it.
When i was a child. I usually, dressed up as witch, except! One year, i dressed up as a barbie as a princess.
I smell a Paralympics video maybe haha. Also I love your friends Omeo! Does she have social media? Would love to know how she travels with the Omeo and how she got that lovely mint colour. Want an Omeo so bad myself for camping
The money I need for my jet power wheelchair 5:09 that is a must have don't you argee?
I’d like to recommend ebor mobility if you are looking for wheelchairs if that’s ok
Can never have enough spooky 👻
Hi gen I have BBS which means I have to use a cane I am also bilnd in my right eye when I use my cane people don't move out the way people don't understand what it's like being disabled
Gem!
How can I find a chair like yours
I’m in the USA
I’ve just checked with the supplier, and unfortunately they don’t deal outside Europe. 😐 have you looked at RGK? They are quite similar 😊
Celebrating 🥳 Halloween 🎃 🎉🎉🎉🎉❤❤❤❤❤❤❤ 7:12
Flashing light warning, please.
I think she did put up a warning.
@@wheelie26 Not for the trick-or-treating part.
Instead of a new camera, maybe look into a gimbal instead?
Wow, I was really surprised to hear you don't get free prescriptions as I just assumed you'd be getting Child Tax Credits/UC. Not getting free prescriptions also has other knock on costs too, as you'll, no doubt, also be paying for dentist and full price on eye care too. A shame😪
Another misconception I don’t qualify for child tax credit, or UC
@@Wheelsnoheels Sometimes whether you qualify for a benefit, or not, just seems so random and unfair. My best friend has terminal cancer and can't work and yet has not had any of the major C.O.L. payments. Just not right.
What do you do for living
This
Instead of using a Camera why not use your phone today they are just as good or even better and save you money in having to buying a new camera.
I do
Sometimes. And I’ve defo thought about this. The only issue is the mic. Unless you know if you can get mics for iPhone?? I resurched a while ago but didn’t get much joy. 😵💫
@@Wheelsnoheels Yes you can get mic's that plug into an iPhone, you can even get wireless mics like WIreless ME from Rodes.
@Wheelsnoheels you could get a Rode clip on mic. They really work well. I know a few youtubers that use them.
Just as good? Dedicated cameras are often better.
For halloween I dressed up as elsa from frozen 2:07 2:15 2:30
Ahhhh so
Nice 😊
Pirate
Love it
Cost of living crisis is caused by inflationary money printing as a result of deliberate Government policy. Essentially Government is getting larger and more expensive, it runs a deficit and a growing debt which it tries to reduce by devaluing the currency. It’s a hidden tax on all of us. ‘Doing something’ about the cost of living crisis would mean cutting back on public services-including welfare for the disabled. If the Government increases welfare it has a corresponding increase in the cost of living by reducing the value of the pound in your pocket. There are no free lunches unfortunately.
Thanks for sharing
The title of this video is misleading! Your other video's are much better structured x
Thanks for the feedback
Hasn't your economy almost doubled there?? We've experienced such a huge jump in everything since COVID here in America. So it's no surprise to me that the cost of disabled living has doubled too.
Yep, same in Australia. Lots of whinging about mortgage rate increases to about 6%, from non disabled. Cost of food, petrol, healthcare, electricity have all gone up, though everyone got an elec govt discount.