As part of my community I have turned on “community contributions.” I would be thrilled if you would like to add close captions, translations, and subtitles. Im all about accessibility for everybody. I'm working so hard on my channel to give you the best content I can make. Lets work together to reach more people to inspire, motivate and entertain. Gem th-cam.com/users/timedtext_cs_panel?tab=2&c=UCNP1tYcve1MtivJtDjHsO-g
Wheelsnoheels - Gem Hubbard in Alberta Canada I have cerbal palsy and I have to pay for pretty much everything you said in this video transportation is one of the biggest expenses I am lucky for the fact that I do have a spouse that is amazing that helps me with help around the apartment
I could think of so many things to include in the cost of being disabled especially with multiple disabilities...incontinence supplies are a big deal but the thing that has thrown me for a loop most is being hit by a car. I'm still digesting this it was on December 20th this year 2019 thankfully I am fine I feel absolutely blessed to be alive however my ultralight was completely totaled. Ever since I've been working with Community programs getting donations and trying to get a proper chair back which is really challenging because I need my chair to get around. The Loner chair that I've been given to use in the meantime is extremely hard to control and regularly tips backwards. I have autoimmune disease and I can still walk a little bit so my insurance will only give me a chair that allows me to get from my bed to the bathroom but not get around outside. I don't know about you guys but only going from my bed to the bathroom isn't something I'm interested in. Eventually I will get there but I also need a chair to use like yesterday so it's really frustrating and without a chair it can feel like it's lasting longer than it is. when I have told able-bodied people that ultralight chairs are 1 to 3,000 for even a semi suitable one they act mind blown and say yes but your insurance covers that?? They definitely don't get it.
@@addieloveswheelies5672 Yes in Australia the government scheme only covers mobility aids for use in your house. So people with mobility issues don't need to go outside. Give them aids so they can do things like buy food, clothes, shoes, themselves. Maybe even get a job or study??
Service dog, training, food, treats, bedding, harnesses, bowls, vet bills, and anything else your dog may need and you may need to train or use your dog
Yep. Bet like me you never asked for this incredibly expensive condition and it’s enormous toll: financially, emotionally, physically, endless doctor appointments, etc. Still try to maintain positivity and you as well. Wishing you a happy life. Thank you for the comment. It really resonated with me.
I completely agree with the point about wheelchairs. People don’t understand that to get a slightly decent one that doesn’t fall to pieces when you touch it costs. A lot.
Krazie kat yes. When people say ‘your wheelchair is worth his much? But I can buy a wheelchair from Argos for £50’ and then you have to explain the difference an active user chair has.
Hi Gem, Here in Germany it's much of a journey to get a wheelchair: see the doctor, get a prescription for the wheelchair (and the prescription has to be for the exact type or whatever the wheelchair has to be,even though I don't even know which brand, height, wheels and whatever I need!),then see a wheelchairseller to measure for the wheelchair and then sent prescription to the health insurance company to let it approve. Which takes lots and lots of time and then, when it is finally approved (but during approvement lots of calls and questions........very stressfull) waiting for the new wheelchair. My walking got so bad so fast in the past months that I started applying for a wheelchair in November last year and it is still not here. So I am stuck at home. I guess, curing a depression must be much more expensive than paying faster for a wheelchair, mustn't it? And I am getting depressed by sitting at home with almost no social life around me..... There must be another way for us to get assistance earlier and easier! And I have to pay for VitaminB shots,which I have to inject every weekend.I got diagnosed with MS in 2012. I am 48 years now, can barely walk, brainfog and vertigo plus Fatigue kill my days. And when I am having a good day, which means I could go out see some friends or go shopping or whatever, I can't cause there's no Wheelchair. The walker sometimes isn't enough. Oh, by the way, I bought the walker myself, cause it would have been almost the same procedure as the wheelchair is now. But the wheelchair is much too expensive for me. Thanks for your videos! Have a great start into the new week! Greetings from Germany, sincerely Britta
Hi Britta. Thank you for your comments. The wheelchair process sounds similar to the uk. I hate having these extra costs. I hope that we can raise awareness. I hope you get your chair soon. xxx
That sucks Britta, i can relate. I live in the Netherlands and my wheelchair and handbike application was in November 2015. Now finally getting somewhere and receiving both within a month. I hope you can get yours soon as well! (hugs)
Hi Britta, I am so sorry you are going through this. I am in America, and at least with Medicaid, it is the same way. I asked on Facebook if anyone happened to have one at a discounted price, and someone actually donated one to me. I am so very lucky. I wanted to suggest this idea to you, because it is important to get out even for just a short outing when we can. If you need someone to talk to, please let me know. I hope you get your wheelchair and get to go out soon. You may also consider some basic biking gloves; I found that is easier to wheel with than hurting my bare hands.
Britta Roth I know how you feel about not having a social life I feel the same way because my friends left shortly after we graduated from high school and my family doesn’t care enough to even check on me I have no social life either I get extremely depressed a lot
@@MorganB101 Yes, even getting out to do something like shopping helps. I wish I'd bought aids for myself earlier, especially the rollator for large mall shopping.
Voting somebody like you in the parliament would make the change we need, because if environement is made good for disabled, is good for everybody else. People is made by children and elder as well, and all of us will became (hopefully) older and more fragile than just productive and adult consumer
I agree with you. It is hugely expensive to be disabled. If only the average person know this. I can vouch for all that you said as a wheelchair user. Thanks for raising awareness of this topic.
You are amazing... I am from Canada and we use to be able to get help with the cost but, now it seems that everything is being cut. Couple of years ago my OT(occupational therapist) suggested I get a power chair, a shower chair, and a walker, When I applied for funding I was turned down. I am on disability and barely get enough money to pay my bills so this was very stressful. Thankfully I have an adult son who took it upon himself to pay for what he could. I also had a friend find someone who was giving a power wheelchair away. I have what I need now thanks to the people close to me. As much as I appreciate them it bothers me because I pride myself on being independent. Thanks again for sharing.
Being on food stamps and having to pay for super expensive food just because I'm allergic to normal food and having to pay for a nutritional supplement where I only get 4 bottles for $9 and I have to drink one bottle a day or more if my stomach can't handle food I also have to pay for things related to my wheelchair I also have a limit on how much my braces can cost that my insurance company will cover so then I'm left with the leftover cost of my braces I have also had to pay for finger braces because my insurance company would not pay for them cuz according to them my fingers aren't disfigured enough for them to pay for me to have nice braces that are $50 each so I have to pay for plastic because I can't pay for silver ring splints and my insurance company covered my glass frames but not my lenses so my lenses would make me be able to see I have to pay for and most people don't understand that glass lenses cost over $200 when you can't see
So glad you addressed this 🙌🏼 I’ve had to pay for my power chair, my stairlift, my cleaner, braces and joint supports. Even buying clothing that’s easier to put on. Servicing for my power chair and stairlift. I could go on, the list is endless 😩
This is such an important video, thank you! I have to pay for a wheelchair, shower chair, walker, one of my meds isn’t available on the nhs, and also someone to go to appointments or just out with me since my condition makes me faint on a daily basis so I’m not safe on my own. And there’s so much more that people just aren’t aware of! Thank you again for bringing light to this topic/issue!
Ps, Not sure if it’s easy for you to change but there’s a typo in your thumbnail! Id want someone to tell me so hope this doesn’t come across as rude! Thoroughly enjoyed this video 😊 xx
The note about having to hire services for home maintenance that most able bodied people would attempt themselves to save money is something that often effects me. I rent so most things need to go through the landlord anyway, but simple things like cleaning the windows before moving out, my friends all rented a jetta and hoses it down themselves. I was busy calling cleaning companies for weeks trying to get a quote that was lower than $120, since I was already having to pay for steam cleaning as part of the lease. I am very fortunate to have strong social connections, so I ended up paying my friends with pizza to come help me. But if I was socially isolated, I couldn't have afforded to clean my flat.
Great video gem!! Really hits it home how much disability costs. So many people sadly think it’s a free ride but it’s not. There are so many things the government could stop doing that would benefit disabled people in the U.K. but I think compelling energy companies to discount in some way the costs for disabled people would be a massive help to the monthly outgoings for a lot of people.
They have warm home discount but they need to do what my water company does. After I provided medical note saying I use more water for disabled reasons my bill was capped. Don't get why electricity and gas can't do same!
There is a slight discount on gas and electricity here in Australia by the energy companies, but I found I had to keep telling them I was on a Disability Pension. In Brisbane Qld Australia, the Council also discounts rates and I think for seniors, which I also am.
So far, crossing my fingers!! Insurance has covered most of the expenses. There’s some medication that insurance won’t cover sadly. Home modifications were out of pocket. E-Stim therapy appointments were expensive!!!!! Adaptive sports stuff like my rugby chair and in the future a racing chair are crazy expensive!!!! Knock on wood insurance will cover more things in the future!! But that’s most of the stuff I can think of..... loved the video🤙🏼 I’m a C6 incomplete btw♿️
I still don’t have handicap vehicle at all I can’t afford it I pay for some of my medical supplies I would give anything for a car but doesn’t look like it’s going happen anytime soon I don’t live in a handicap house either it’s frustrating glad I found someone who knows what I go thru
I feel you so hard on this! If I hadn't lived in a very specific place at the time I got stranded in my inaccessible apartment and almost died, I wouldn't have my powerchair or any other adaptations today. Unfortunately, I can't say where I live due to safety concerns.
Excellent video Gem. Liked and Shared! I think we're lucky. On average - as a household I am paying out directly £120 a month just on prescriptions. Having the heating on for longer adds about £30 - £40 a month to the gas bill. There's also the transport costs. I get Mobility so I'm just paying for fuel and servicing and that comes in at about £130 a month - where I can use the car, failing that taxis are a minimum of £4.50 a time adding £18 a month. That comes up at £308. Ignorance is not restricted to the general public either: "You're in a wheelchair. you obviously don't exercise!" - and that from a GP! The fact that I have a bike odometer fitted to my chair and I'm regularly clocking up between 5 and 8 km a day didn't seem to impress her.
Don't talk to me about Dr lol!!!! Have you see the prescription monthly plan? Where you pay x amount a month but you can get as many prescriptions as you like!! woo party time ;)
Have you looked into a prepayment certificate for your prescriptions? I have over 10 prescriptions a month and save a fortune by doing this. It's worth looking into, if you haven't already.
Definitely get a prepayment certificate for prescriptions. Around £10 a month for as many as you need. You shouldn't pay servicing on a motability car either? That worries me! It's included in motability xxx
Totally get you on the wheelchair, mine is powered with specialist seating and tilt to reduce angle of pressure on the spine. Insanely expensive. Travel costs are nuts, because I need a wheelchair accessible vehicle for the chair to drive in the back of which uses more fuel and you need to travel further to find parking that the vehicle will fit in as well as places with suitable wc facilities!Yes there is government help but it doesn’t cover anywhere near all of it. I have a true "form" and "brown envelope" phobia thanks to certain uk institutions that will not be named. So much isn’t covered in the uk, specialised cutlery, bathing equipment, manual handling equipment, specialised pressure care bedding and seating. Allergy free foods, gut friendly foods. Cost of care. Hospital parking is the bane of my life. By the way, why the hell are ramps so expensive? Luckily my O2 is on the nhs. I could lay make it through the day without my electric hot pads and heated blanket. I cannot afford massage or acupuncture for the muscle spasm so heat is my only help. I’m banned from hot water bottles because my pain levels mean I cannot feel when I’m burning and I’m covered in blister scars! Also there is the cost of hygiene and bathing cleansers when your skin is sensitive and fragile due to your disabilities you can’t just use any old shower gel! Add into that needing the installation of a wet room because you can’t get in or out of a bath and need to be showered in a seated position! The list is endless it seems.
I’m also a power chair user. I have a wheelchair accessible van and although the set up is extremely high the fuel costs are actually no different to that of a car. In 2018 my van cost 13p per mile.
I have a condition that isn't recognised in my country so the only thing I could do is get a good illness insucerance (something like that ) which is about 200 euros a month in addition to that I cant pay for all my medication that is not insured but atleast I get something against the pain. My friends are always shocked when I tell them the price of something, thinking that as a disabled person you just get it handed to you .NOPE ! But Oh well soon I'll have a good wheelchair and after that I'll be broke AF for a while 😂😂
I bought an ICE Adventure HD trike (3 wheeled bicycle) to use to regain cardio and muscle after spending 12 years in a wheelchair, it costs as much as a decent used car, over $5,000, before the modifications I also paid for to make it easier to get on and off. Without the trike I would have never regained enough cardio to use the prosthetic leg, much less the muscle mass. My other option for physical therapy was a trip 90 miles each way 3 times a week to use a stationary version of the same machine. Using a conversion van (wheelchair lift equipped) getting 10 miles per gallon that would have been 18 gallons a day 3 days a week at $4 a gallon or roughly $216 a week $864 a month for fuel alone. Plus 3 to 4 hours a day driving ( I could barely manage an hour driving before needing to lay down). And just to put this price in perspective I was receiving under $1,000 a month total income at the time.
Just found you on utube thanks you help me realize the costs I pay are real cost is. massage no one believes how important this is and the benefit I gain from this it took two years to get funding for incontinent product as I was spending so much it so help will be following you
It's so lovely to hear someone else that has massages just to keep moving. It drives me mad when people think I am off for a lovely relaxing massage each week. When actually it's very painful.
I stopped going to a physio who always did painful massage that took me a week to recover from. A massage therapist I see is much better and I feel better for up to a week afterwards. Even helps with allergies and lymphoedema as well as muscles.
First of all I really like your channel I really admire u ❤ I'm not american/english and in my culture groom buys jewellery to the bride as a wedding gift and when I had to be operated my mom had to sell her bracelets which are the first gifts my dad gave her to pay my operation I know maybe bracelets dont cost much but it is really painful to know that my mom gave up on smt special for her bc of me it really hard to stand mentally
Awww bless you thank you for sharing. Its really good to get different perspectives on this in different cultures. I can understand how you must feel, but speaking as a mother I would give up anything to insure my daughter is healthy. I know your mum feels the same. A child is worth more than any diamond, gold or silver. I hope that helps you. xxx
Wheelsnoheels - Gem Hubbard thank youu so much❤ It really helped and also thank you for your reply it is worthy for me cuz I know typing takes really big amount of your time❤
This is really interesting, I live in America some costs are the same and some are different but I definitely think something the government in either country could do to help more if you have a wider variety of services for different ages and different type of disabilities.
You are so right. The ammount of stuff you have to pay for is ridiculous. And plps doesn't come close to covering a fraction of it. I'm always cold. And the heating bill was a telephone number lol. I was turned down for a electric one even though stanmore hospital told them thats what i needed. So I'm saving for a wheelchair size one. There about £5,000. When i could walk i did drive. But not now. I might take lesson to drive a adapted car in the future. But at 62 i don't know if i should bother. Great video. X
Oh you should drive again. Its so easy. have you seen my how i drive video? th-cam.com/video/D61niRT2pPo/w-d-xo.html If you can already drive, its very easy. And 62!!!!! Thats still young. let me know how you get on with driving. :)
Hospital parking! 😡 I’ve not got a blue badge but have been told I am eligible for one, but even then my hospital has barrier controls, there is a way to get a free exit ticket but you have to go to the depths of the hospital, hunt down the admin department and then find the relevant person to give you that ticket. So I have to pay for every appointment (neurology consultant was then 3 hours late so we were there for 5 hours) and when I’m admitted and have to stay in my mum stays most of the day, at roughly £10 a day, not including her having to take the days off work. I’m lucky that the neuro team from Southampton come up to salisbury which is closer to where I live so my travel costs are a bit less. I also run through a lot of electric, mostly in the winter on heating and lights as well
Love your channel.... new subscriber... I’m from the US....I have a recumbent trike that was extremely expensive and as you know there a lot of mechanics involved in a bicycle however my manual wheelchair cost twice as much as my recumbent trike and it just has wheels that move. I also have a service dog and he requires quite a bit of food per month to live and of course I could feed him that dry kibble stuff that will kill him but I’ve chosen to feed him a real food diet so that I have a service dog for a very long time, therefore I spend a quarter of my income per month on my service dogs food alone. Hand controls very expensive, but necessary. Hot pool therapy. I could go on but you have the idea. One of the biggest problems I have found is getting any kind of help for “good” durable medical equipment here in the US is almost impossible.
Thanks for sharing. I didn't know too much about service dogs, and have been shocked that you still have to pay for all the training, food and vet bills. xx
I've got Late Stage Lyme Disease and co-infections. I have to pay for every visit with my Lyme Literate Doctor (most doctors have no clue about Lyme), all the lab work to diagnose my condition (over $1000), all the treatments my Lyme doctor prescribes (insurance doesn't cover lyme treatments). Plus paying for my special diet with constantly rotating food allergies. My mobility aids (power chairs, manual chair, crutches, cane). An AC/Heating unit. My service dog and all of her training and care. Taxis to and from appointments. Deliveries of my groceries and other supplies. Shower chair, bedside toilet chair. If I need a carer beyond the 27 hours a week the state pays for, then I have to cover that myself. Plus if my carer needs something to care for me better (like better grips on the wheelchair handles) then I have to pay for that as well. Also throw away dishes and spoons and things because I can't wash dishes most of the time. There's probably more, but it's really depressing to think about. Especially since I can't work and haven't found a way to make regular income - it's a nightmare! But like most disabled people, we figure it out. Thanks for this video
I have epilepsy and A-Typical autism and for many years my dad use to have to pay to take me and him on the train to London, the underground to great ormond street children’s hospital and then once I turned 16 another hospital further away. This send on for 8 years, and we had to go every couple of months. All that travel expenses really must have added up for my parents. We. Would have also had to pay for food and drink whist we were out as the time we were out was often many hours. Then once I turned 18 my dad would have taken me to our local hospital where he had to pay for parking. Thankfully this was only 1 to2 times a year. Now I’m lucky enough to just have a yearly appointment and blood ready at my local doctors surgery just down the road a few bus stops away and I have a bus card due to the fact epileptics are not allowed to drive.
There are several hair salons having days when you can come in to donate hair (f.ex. to cancer patients) and you get the haircut for free. Why not put the idea out there to once in a while have a day where they go to disabled persons' houses for haircuts without extra charge or for free? That's a practical suggestion that came to my mind right away. Enjoy your videos, thanks!! :)
And the time if you have to travel by bus as seeing ophthalmologist and can't drive. I would come home exhausted and need a few days rest to recover from walking and changing buses.
I had an NHS wheelchair and never used it as I could hardly move it it was so heavy. I bought my own which is so much lighter and more comfortable but not cheap. I also use a mobility scooter and since a few months ago I lease. I used to own one but with insurance, batteries yearly and breakdown and recovery insurance used to cost a fortune, now it’s all covered by the lease but not cheap.
I have to pay for isotonic drinks (they have to make up half of my fluid intake), acupuncture, deep freeze, paracetamol, physiotherapy, osteopathy, personal training, compression leggings which are like £30 each and I have to wear them every day, travel costs, hospital parking and I’m starting CBD treatment so that’s gonna cost loads too! I also my parents have to pay parking and fuel costs to visit me in hospital.
Because my doctor and insurance are being frustrating I am looking at buying custom wheelchair out right that is the cost of being disabled. This does not include the splints or the forearm crutches I have bought outright. Or my monthly meds or the cost of all the doctor's appointments to get diagnosed and I can't even do pt because we can't afford it
I'm incredibly grateful that most of my accessibility needs are paid for by Veterans Affairs. They provided my knee brace, my second manual wheelchair (I bought my first before I could be seen by my doctor), I just had somebody come today for a stairlift and transitions ramps and I'm supposed to be seen next month for a power chair option. I would still be virtually immobile, practically living in my recliner, if it weren't for them footing the bill. Now, if only I could get them to take diagnostic care as seriously. 🙄
crutches and canes went through a couple different ones until I found forearm crutches that allowed me to at least get around the house. Then a rollator for out of the house because I can only go a short distance with the crutches. I need a wheelchair but that will be out of pocket I need an adjustable bed because I can't lie flat and I'm tired of sleeping in a chair in my living room. It is a toss up whether I will get the wheelchair or bed first both are expensive. Then there is all the little stuff grab bars for the shower, a shower seat, wipes, incontinence items, compression socks and bandages that need to be replaced frequently. Shoes that are soft and deep to accommodate a swollen foot and orthotics or bandages. Oh and put the word orthopedic in front of a shoe and assume the price is going up anywhere from $100-200 though I was lucky to find my first pair on clearance. My local hospital has free valet parking if you have a disability placard for your car so that helps. But I could probably go on all day with just the little things I buy every month. I can't drive but there are a lot of places around me that will deliver groceries but it is a 3rd party company working with the grocery store so when you buy food from the app the price is higher for the food itself then in the store then delivery fee or yearly membership plus a tip for the driver all make groceries much more expensive. 1 store does order and pick up that doesn't raise the price so I try to do that if I can get a ride to the store.
Not being able to work full time. Having to attended assessments or go places to get people to help you with forms. The mental, emotional and social cost of isolation.
I’m a type 1 diabetic. I have insurance but still have to pay for large parts of all the supplies I need to live. My insulin is ridiculously overpriced, my pump is $8,000 , I have to have new pump supplies to change the infusion site every 3 days, I have a continuous glucose monitor, and tons of other supplies. The cost of all this is truly insane, as I am sure it is for other disabilities. 💕
The things I have to pay for as a nonsymptomatic hypoglycemic, tight tendon person is, physical therapy costs, service dog, training, anything having to do with a dog at all, doctor visits though most of the time insurance covers doctor visits it hasn't been the case due to circumstances, and I've even been told that I need to start saving money for a wheelchair. I have so many pairs of crutches in my closet and it is such a pain for my arms to be on crutches for multiple months at a time. Now that my tendons are getting worse in my ankles,knees, elbows, and wrists, doctors see a wheelchair in my future. I also have to get blood sugar meters, test strips and needles, which cost around $50~70 and one bottle of test strips can cost $20~40 alone.
In the stupid US I have to pay thousands per year for insurance and then thousands more to cover all my health appointments, tests, procedures, medications, etc. all while not being able to work a full time job because of my disabilities. Honestly what I'm forced to pay for insurance alone is ghastly then I still have to pay SO much for everything else. The US health system is such a scam and just worsens my conditions due to the stress it adds on top of everything else I have to deal with.
Yes, illness and disability is the number one reason for homelessness etc in the US. Here in Australia, government subsidies are very little a lot of the time, or not what is needed, and insurance only covers 60% of costs.
I know I’m rather late to the dance here, but I’ll be getting my first wheelchair at 54. I have been able bodied all my life until I had to retire from truck driving in 2012, and fighting for disability in 2014 until now, 7 years later and ongoing. Like I said I’m new to wheelchairs, and so far I have to have paid for my 2019 Toyota Sienna minivan with the power access side seat. The option for this seat alone is $5,000.00 above the sticker price of the Sienna, but the best thing everything is warranted by Toyota itself as the seat is installed there on the assembly line. Price for the Sienna very lightly used was about $38,000 out the door, as it was lightly used with 1300 miles on it. I don’t know of any further prices yet as my insurance will pay for my wheelchair, but if so, they will be listed on my FB Group, Wheelchair Riders… You have some outstanding videos Miss Jen, keep them coming and I will keep watching… Cheers -Gryphon
Disabled equipment or being Disabled in general as I am and can say from personal experience its a hefty price tag with all the different equipment you need
Much of this you’ve covered, but my disabilities are invisible so often people don’t know to look at me that I have these challenges. Just to show that you don’t need a visible disability to have an expensive one. So first there are the costs associated with medical care - as a US resident that includes my premiums, copays (including for treatments like massage), and prescriptions - plus over the counter meds, equipment, KT tape, supplements, new things I’m trying to see if they help with pain, etc. And then there’s the costs I pay to pace myself. For instance, I pay more to have dental work done over several appointments because keeping my mouth open for too long causes pain. Then there are the “conveniences” that many people consider luxuries but that are necessary for me - I can’t clean my house or do yard work, so I pay for people to do that because otherwise I’d be living in squalor - plus food delivery, both grocery delivery and things like Postmates, without which I often wouldn’t eat (because I don’t have the energy to prepare food). I’m looking for a new house right now, and I’ll probably end up paying more for something all on one level as opposed to something like a townhome with all the bedrooms/bathrooms upstairs. I drive places that some people would walk/bike/take public transit to, because I never know when I’ll have a flare and need to be in control of my exit strategy. I have to pay more for higher end personal products because I’m allergic to the more affordable ones - this includes things like skincare/soap, cosmetics and even jewelry - if I want to wear earrings, they have to be 14 karat gold or sterling silver, otherwise I’ll get a rash. I know that’s trivial but there’s nothing wrong with wanting to wear jewelry. I pay more for the assurance of ease, which usually means preserving my spoons. For example, when traveling I’ll book a nicer room, because I must have a bathtub (not just a shower) and I don’t have the capacity to “rough it” or improvise if something turns out worse than it sounded. Or I’ll pay extra for plane tickets because they leave at a better time or have fewer stops. Or if I’m even just going to a show in my hometown, I’ll pay more for tickets that guarantee a seat, or early entry, rather than having to stand in a line. These things are annoying for most people but literally impossible for me. And let’s not even THINK about the $3000 I just dropped on a much-needed mobility scooter, which most people are shocked to learn are not covered by insurance, even partially. (Plus I had to get a more expensive scooter because I have to be able to lift it myself - no one to help me.) Honestly this only scratches the surface. I am very fortunate in that, unlike many disabled people, not only am I able to work full time but I also have a pretty successful career. I am EXTREMELY privileged in that I can afford all of these things without having to fret too much over how I’m going to pay for a service I need. But I’m also acutely aware that this could all change pretty quickly. My mom and I have had several conversations about what happens if I’m no longer able to work. It’s a scary prospect but I know it’s a reality for a lot of disabled people. Thanks for broaching this topic - most people have NO IDEA.
Gem you have done a wonderful job with this video! Amazing! I am away at the moment I have spent all day trying to find internet just to watch this... at 12:06am I finally got to watch it to the end! It was worth the fight over the internet to see it! Well done! Hugs x TC. Stacey K @RawAbilityLife
Love your videos!!! The only thing is you said “sometimes disabled people have to work harder”!! I feel disabled people always have to work harder as everything is harder for them then the average person!! ( depending on disability)!
Oh my goodness I can relate before insurance I had to pay over $500 out of pocket every month on medications alone to keep me alive... not to mention special diets... alternative therapies for things that prescriptions don’t really help with. And other ability aid things. And the doctor visits of course and the occasional ER trip. It adds up. Imagine this while being in university!
The thing i say to people is how many wheelchair users does it take to change a lightbulb Luckily i have a husband who can do stuff too And for bigger bits there is a subsidised handy person I just spent loads on the equipment i need for rehab equipment so I can do it every day rather than once or twice a week
A basic power chair for me is between 2000-3000. I can use a FSA account that is money taken out of my paycheck for medical expenses like copays and any other out of pocket expenses. I use it to inch closer toward the perfect wheelchair for my situation. Manual wheelchairs are not good for my situation
I have had due to my multiple hidden disabilities. I have a quite a few of the cost talked about in the video. I also have some other disability cost that have not bing covered in the: disablity ID( to help prove I have disabilities with out have to carry doctors letter ect), first class rail tickets so that I have more space for my legs ( due to pain) and less busy ( less likely to have panic attacks), gym membership at a gym with a heated pool ( this is hard too find and often cost a lot more than normal), soft clothing such as cotton or bamboo (due to sensory issues) and adult sized tricycle (as I can't balance on a bike. I though I would add this as I whated to raise awareness that all disabilities wither visible or not have lots of hidden costs.
I have to pay for transport, wheelchair, supplements, food alone when you are sick and trying to be as healthy as possible is crazy, I mean people just don’t understand that our medical bills might be free but the nhs only covers the basics of like physiotherapy we have to pay for gym membership the same as able bodied people and we want to be healthy so yeah it’s crazy and the government and people in general don’t get it
Wheelsnoheels - Gem Hubbard they don't I think my family literally think I have money to burn but it all goes to just staying alive and keeping me having a little independence when possible
my illness got so much worse just as i moved out and started managing my own finances... i still considered myself quite lucky to have access to as much money as i do but buying all my mobility aids recently, paying for pain medication, ER visits that insurance doesnt cover as well as even food that i can eat, it all took a great toll on my budget these past few months - even my tattoo savings went towards it
I know I'm way late but just found your blog and the biggest thing I pay for is mental abuse I have a bone deterioration disease that causes my bones to slowly dissolve over time time Which causes mobility to be at a minimum which means I can't exactly go run a marathon I can still walk fortunately but for very short time before the pain is to much And the cruelty shown to me when I get on the electric scooter to shop for groceries is detrimental to me I have gotten to the point of not leaving home unless nessary I know this is nothing like being paralyzed but according to Dr's it won't be long I am prolonging it and staying as mobile as much as possible Go luck in your awareness thing I wish you the best. Subing now.
Many go through this especially if youre young. I'm nearly 70 and have been repeatedly abused "faking it" "special privileges" by a young man in a grocery store. My crime. Using a cane I paid a small fortune for myself as I had to get one that was the right height for a 5' person. No disability parking etc. I walked to the store nearby. I told him he was an "ignorant a..le". He apologised. Other similar experiences. Even ageist ones! Geez I'd never even think of treating someone that way. I also felt traumatized and loathed to go food shopping after these experiences. Now the next person who does it are going to wish they had never been born!
This is so very true. That's why I'm simplifying my life because of my disabilities and limitations. That's why I'm getting a motorhome class C or a cargo van or minivan to live in full-time.
All my medications cost $150 USD a month (AFTER insurance. Yep, then I have to pay insurance costs in addition to that), I can only work part-time but am not eligible for disability because I make barely above the poverty line, and I have to get specialized care like frequent massages which aren't covered by insurance, because if I don't then my muscles seize up and I can't walk or sit up. The U.S. SUCKS to be chronically ill or disabled in.
I have severe stenosis, degenerative disk disease, nerve damage which results from damage during a surgery. I wear an AFO orthotic on my left left which I had to pay a big chunk of. I use catheters 5x at least a day which my insurance only covers a portion of. Every doctor visit and physical therapy appt costs me 45.00. I have a copay for my prescriptions. I use a forearm crutch to walk and because of a plate and screws in my wrist I buy my own ergonomic fore arm crutches which are some in pairs. I use only one. I have several different wrist braces for arthritis is certain joints some of which I have had to purchase. I also have back braces that I have had to purchase. I am very fortunate to have Greg's Mom help me after my fusion surgeries...three levels in my lumbar spine and this month for my cervical spine. Otherwise I would have to go to a nursing home for my recovery. I also have a shower chair, grabber and various other little helper things. (Under cabinet jar opener, special can opener etc). When I go to events such as a Renaissance Festival I have to rent a scooter for the day which is $60.00 plus a $100.00 deposit which is returned when you bring the chair back in good condition. That cost does not otnclude the ticket for the festival which is 25.00 for the day.I am not writing this out to complain just stating facts on what I pay. I figure whatever I need to do to keep functioning well is worth it! I make sure to take good care of my things so I do not have to replace them. Thank you for sharing such awesome information with everyone!!!!
I don't use a wheelchair for my walking disability (not sure what the evolution will ultimately result, so far paid $400 US for a knee scooter for the 3rd foot surgery to have permanent nerve damage from the previous 2 rendering my toes insensate), BUT I'm paying for my own service dog for a different disability. I pay for her adoption, food, veterinarian(she has allergies so monthly shots $95 US + $30 for the visit), treats, toys, food, cold weather shoes & clothes, hot weather shoes ($85 US), training, crate, seatbelt, seat cover, harness, and all other maintenance for my service dog. I was fortunate enough to find a non-profit training organization which discounted training fees, but it still costs $140 US per month just to train her. This is just for the animal, not including the reason for needing her. I am privileged to have stellar insurance which pays for my doctors, surgeons, shrinks, meds... But without them, I'd be in the hole. One missed shrink visit costs $75 US. I see my shrink every week! And I can't work. I used to take for granted being able-bodied. Now, I miss the halcyon days of standing in line for an hour for literally anything. The financial cost is high, but the cost of my privacy is higher. Having a service dog means that everyone who sees me knows that I have SOME disability. And they feel that it is their right to covertly ask what it is. "What type of service dog is she?" I realize that is a privileged thing, to have a hidden illness that I have the power to choose to disclose it versus an obvious one. But I miss those days of being ignored. I use so much more mental energy on keeping strangers comfortable that I barely have enough to maintain my own issues... Another cost, my mental energy.
In the US they usually cost from $20K-40k just to get a trained service dog. And they usually only work for 8-10 years before needing to retire in their "golden" years.
My meds cost me almost $400 dollars a year, which doesn't include additional costs for pain medications, probiotics/digestive meds and joint braces (when they need replacing). I also use a lot more hot water than most people because hot baths and long hot showers help ease my joint pain. There are also periods of time when my depression gets in the way of cooking so if I want to eat more than eggs and toast, I have to buy pre-made food and it brings up my grocery bills. I'm thankful I'm able to work full time so I don't have to worry about budgeting in the extra costs but I know there are a lot of others out there who aren't so lucky.
My daughter has cp/type one /epilepsy so we pay for alot thankfully we live in Canada so we have universal healthcare but things like wheel chairs standers and really any equipment is only partially paid for same with diabetic supplies pumps ect every thing is crazy expensive if it's medical... But she's a stubborn and happy girl that proves the doctors wrong all the time
Although it’s not completely a disability I have to get new glasses every couple of years as I cannot see without my glasses. My parents also need glasses. Add to that due to glaucoma a family member has just had to pay for laser surgery and cataract surgery on both their eyes as the NHS lost their details ( and so they were put back to the bottom of the NHS waiting list) and they were starting to struggle to see and if they hadn’t paid privately they may have gone blind.
Our family has narrow angle glaucoma issues too, going back several generations. I also have wet macular degeneration and need multifocals, computer glasses, and either fitovers or prescription sunglasses. I also get tint to reduce glare for migraines and improve contrast with the macular degeneration. Three rounds of laser surgery for glaucoma on both eyes at private ophthalmologist and over two years of injections into eyeballs for macular degeneration. Costed me a bloody fortune. I could have bought a replacement car. And it will be an ongoing cost for the rest of my life or going blind. Still getting injections but at a new ophthalmologist who is better qualified and charges less. He taught the one who was charging me a lot more and after two years without improvement I suspected was rorting. He charged more than any other ophthalmologist by several hundred dollars a visit and was pretty rude as well. My eyes are my main medical expense now, but with HEDS I have a lot of other medical issues as well. I feel like I'm on some sort of mouse medical wheel I don't want to be on but can't escape from.
I use a power wheelchair, so often people assume I got it from the NHS and think I'm living a very comfortable life on disability. I can't even get Pip. I'm still looking for a job that I can do with my health and mobility issues and rely on my husband. :(
The time it takes to apply for accommodations for things, such as school in standardized tests. Also, airline travel, accommodation processes can be quite onerous. Not a financial cost, but a time cost.
It's hitting harder now, in 2023, more than ever Gem. I'm indoors today because I can't afford to use my electric wheelchair too much, I need to do one trip and try to cover everything one day a week. Can't often heat my home, my electric throw is my saviour right now.
The accessible hair salon is the most expensive in the area. I pay more for my heating because I feel the cold more. I need a carer so if my husband works, I have to pay for care. Or my husband is my carer so he can’t work. I’m coeliac so pay extra for gluten free. Pre cut vegetables. Yes, hospital parking. I have so many hospital appointments. At least one a week. I also pay for a specialist doctor. Taxis. Lawn mower guy. I can’t get into my local cheap convenience shop, so have to go further to the more expensive shop. I need special hypoallergenic soap, and deodorant. I have to pay for my hydrotherapy. I was lucky enough to get my active user wheelchair off wheelchair services though. I consider myself very lucky. It’s an argon 2.
I live in the USA. There ARE no grants or tax breaks to renovate your home home to accomodate your home. When l went from crutches to a wheelchair it cost us over $100,000.00 to make our small home accessible. Had to take out a home equity loan. There is no funding, nor is there any kind of tax break ir write off for all that money. Where we live, public transit is not great. If you need to have a wheel chair accessible van, you basically end up paying double the blue book value . Hand controls? $7000, Lock down so your chair won't fly around in an accident? $3000, automatic ramp and kneeling? $20,000 to $30,000 . At least you don't get charged sales tax on the adaptive equipment for vehicles. Not true for homes or apartments.
Meal replacements, medication, vitamins, everything that comes with a service dog, chemical sensitivity mask filters, ear plugs, gloves to protect my hands in my wheelchair, and don't get me started on the new custom wheelchair I have to get. The Canadian Government has a program for people with disabilities in which they can cover a certain amount of these costs, but it's a nightmare trying to get them.
I am just getting used to having my insurance premiums go up this year. That is a really unexpected cost of disability here in America. They can just randomly decide to raise costs and they never (that I know of) decide to lower them. I also have to buy my own mobility aids because I am not "disabled enough". I have fibromyalgia and have bought all of my own canes and I bought my mobility scooter ($1000) myself. I had to buy my own adjustable bed and mattress a few years ago. For your viewers in America, if you have a prescription from a doctor, even if your insurance doesn't pay for it, medical devices (including beds) are tax deductible. I have 12 prescriptions and see as many as 4 specialist doctors every month. I think most people don't think of how all of these things can add up quickly.
when you book a motel room they will probably charge you double or three times as much because what you will get is a shower chair in the shower that you probably won't be able to use anyway we shouldn't have to pay any more for a motel room than anybody else
I’m a teenager and I’ve had to learn pretty darn early how to manage my money to be able to afford my service dog’s training and supplies for my disability. My parents help with food and all my medical stuff so I feel responsible for this. I’m worried about the future. Insurance doesn’t cover as much as you’d think.
Mobility aids - stick and smart crutches plus things like replacement ferrules, I’m trying to save up for a mobility scooter, pain relief- pain killers, tens machine and pads, CBD balm, heat patches
I just bought myself a wheelchair. It's a basic one, the sort you might see in a hospital. Now, I'm plus sized, so I had to go up and get a wheelchair that can hold at least 500 lbs (and while that should suffice, I am a tad concerned I may want to go higher on that, as while I weigh in the 400's, probably, I know that I also carry stuff with me, and I worry about that a little). A normal wheelchair on amazon can be gotten for 1-150 bucks. The cheapest one I could find for someone my size was $300. The nicer ones were in the 500+ range, and of course if I wanted something even better, I'd have to spend quite a lot more. Some of these things I was seeing are like used car prices, which is thoroughly absurd. I don't know if I'll be using a wheelchair for a long time or not, as I was prompted to get one by getting a broken foot and being hobbled sort of got me to consider the mobility issues I've had for years related to my back and my feet*, and I decided that it would be best to have a wheelchair for those days where I just can't handle it. Maybe over time, as I go out, my health will improve and I'll be able to take long walks again without need of it. If that day ever comes, I'll probably just donate my chair to one of the mutual aid peeps I know in my area. I already plan to do that with the walker I got after I broke my foot, and maybe even the boot. So I don't really mind the fact that I had to buy the chair. But then, I've got money. I have a job, and although my wages are down because I have to use sick time instead of working overtime like I used to, and I know worker's comp isn't going to pay full wages either. Still, I can afford this one time expense. But there are a lot of people who can't. There's also a lot of people with needs far more severe than my own who can't afford what they need because manufacturers have decided that disabled people are an excellent group to price gouge since these things are "medical". (my left foot is absolutely atrocious, even before this breakage. I've apparently broken my ankle before without realizing it, have a deformed arch, a bone spur on my heel, and planar issues, in addition to my sciatica and knee issues on this side. My right side is ok, but it often gets overworked dealing with the messed up left side. I also have really bad circulation in the left foot, I think, as the skin on that foot gets extremely dry and scaley, and has for the last ten years. It's gotten better since I started wearing the boot, which makes me think maybe I need compression socks going forward as well)
I was under the misapprehension that people with a SCI got more help towards a wheelchair than those of us who can walk a bit, from other things I've seen it seems I got lucky to get 800 pounds towards mine. Definitely spend more on heating. Do you know about prescription prepayment cards, it's still a cost, but 10 pounds a month is better than it would be otherwise. I need to pay for people to do jobs in the house or garden that otherwise I would do myself, I became disabled as an adult, so I'm well aware that I used to be quite capable of putting up a curtain rail etc.
All A&E visits at 80 American at least 16 times. We had to buy my wheelchair $3000 American, all neurologist visits, all co-pays on IVIG. I can’t afford massages. Drugs run about $100 per month.
Insurance, Copays, deductibles, and non covered essentials. For instance my insurance is taken out about $450 per month from our paycheck, I have a $3,000 per family member deductible and a $5,000 out of pocket maximum to cover before I can just go without paying every time. Some of my medications are not covered at all and I cannot afford some of the treatment available for my conditions because they are not covered and are $9,000+ per set of treatments. Last year we spent around $18,000 in non covered and $5,000 in deductible and out of pocket for covered treatments. So we spent around $28,000 total. Last year is just a bit more than we would normally spend but not by much. I don't qualify for disability benefits due to my husbands income being over the limit they require for assistance. However I wouldn't exchange our system for a government medical system for anything. I want our system fixed. So that Doctors get paid fairly and our costs are cheaper to get treatment. I like being able to mostly pick my own care team and have the choice. I have found though that if you get a hold of some of the pharmaceutical companies they will give you discount codes to make meds more affordable. It is kind of a hack we discovered. Also, if you need crutches, walkers, braces, and other equipment that doesn't necessarily need to be custom, thrift stores, are an excellent source to get you through until what you need fits your budget. My insurance completely covered the cost of my custom wheelchair and smart drive, Thank the Lord! I wish they would cover the cost of a service dog plus training. :-(
I saw you recently renovated your kitchen so I'm bumping this post for ideas. Home accessibility is a core issue. For me, an accessible house was the standout cost. I had to move and ignore all the help2buy schemes with stairs. It didn't make sense for me to buy with stairs so I opted for a bungalow but that was a huge expense, often for retirees, not 30 something's. I blew all my savings on making it accessible inside. I still have to make it accessible outside and will likely extend to make more accessible but I've run out of money. It's a money pit. My peers can buy a house with a wish list but disability is a must have. I'm disabled and single income. I have to keep on working whatever to pay the mortgage 🤢🫣🤯 I hate having to pay workmen for jobs I know how to do. Gardeners, cleaners, handymen. It's sooo expensive. I have to work yet I spend all the time and can't save like my peers. The considerations inside and outside your home are so different. I keep dreaming of the day I can somehow entertain and transfer food inside and outside and host a bbq. I want an easy to get to outdoor area without feeling exhausted. To and fro and single level is a must. 👌 Another topic furniture height? I've expensive sun beds and sofas outside but they are too low and I struggle in them. So I am going to have to pay for custom platforms. Indoor solutions exist but no obvious garden solutions? So many solutions inside but being outside helps my mental health. Ps thanks for all the amazing tips. Wish I had found your channel years ago. ❤️
Hi there, thanks for this video! I guess a lot of people don't know this. I'm currently receiving social security for my expenses. Since i'm not able to work. But that's minimal wage, which would be fine for a normal person. But i spend 100 euro extra for my medical insurance, about 20-50 euro for OTC medications, tapes and wipes (incontinence) about 20 euro and fortunately only 17,50 euro each month for cleaning help and my wheelchair. Oh yeah, and taxi's (special regional taxi's that go
Having no insurance, to say getting a wheelchair and transitioning to a totally different way of living (This does not include going to doctors, that's a whole different mess) has been nightmarishly expensive would be an understatement. What I have to pay for? Every single thing, and I'm in America, just to get that out there. I shouldn't be working.. But I have to, or I would just be screwed, to put it lightly.
Insurance deductible and coinsurance (7400 family deductible) and then 10 percent thereafter; out of pocket treatments that are alternative medicine, etc, Durable Medical Equipment (wheelchair/rollator, etc) --- and all the "special" accessories to go with them - some of which I still can't afford, Service Dog acquisition and training and upkeep, delivery service for items when I'm feeling too poor to go get them, etc, etc.
I have to pay for prescriptions and over the counter medicine, vitamins, supplements that's not covered by my insurance. I also have to pay for personal hygiene products related to my disability that's not covered by my insursnce. I also pay for public transit when I need it. I do pay for take out food from the local restaurants in my area even though I do have an accessible kitchen that I cook in, there are times where I feel like having a pizza, grinder, or seafood platter, ect. I have gotten lucky with my adaptive equipment as my insurance has paid for that so far, including a power chair..
Hi Gem have you considered having a mobile hairdresser someone come to your house rather than traveling miles and it would save you money as well , there is ways to budget being disabled as I am disabled myself , so I also know the true cost of being disabled but the benefits people say that you have to save your money to get things it's not easy when battery for my power chair costs over 550.50 for batteries but they is a place that you can get a grant to pay for batteries called indepence at home charity they pay some of the money towards the cost of things .Thought this might be helpful
because of the condition I have, I have to wear thigh high medical compression stockings they are £37 a pair for the good ones, and they need replacing fairly frequently.
You kinda make me feel lucky to live in Belgium! I get a wheelchair every 4 years payed by the government, and not just a basic model, but really what I need. Last time my wheelchair was still in quiet a good shape, so I choose a mobility scooter (you know like old people use :)) and it is AWESOME! It gave me a lot of independance back, and lots of fresh air as well. And it was totally payed for by the government. The only thing I payed for were the adjustable handlers on my wheelchair, because my husband is, like in your situation, not only the love of my life, but also my caretaker, and he is really big, so the handles can go up really high so he doesn't hurt his back. But that was a 200 euro supplement I had to pay for myself. Also repairement costs I might have on the wheelchair are covered by the government. With a limit, but I never crossed the limit. Also toilethandles, ramps, bathchairs and so on are payed for by the government. Also adjustments to the house are partially payed for without a limit to your income. We also have a system where a caretaker (in my case my husband but can also be your parent or child or neighbour, ...) receives a monthly 130 euro to take care of you. It's not much, but it kinda covers the extra heatbills for instance. Therefore every citizen (me and my husband as well) has to pay 51 euro a year. A great example of society taking care of each other I think. So the UK can really make some improvements !! For me, the greatest cost I have because of my disability, is the nearly double cost of my credit insurance. I have a muscle dystrophy that doesn't, in any way, effect my life expectancy. I never smoked. I'm not overweight. ... but still, to cover the mortgage I'm obliged to pay double as an able person, or no bank would give me a loan for the house. And of course the extra costs for fuel, because public transport REALLY sucks in Belgium so I have no choice but to go to work by car.
Banks suck in that they often still discriminate against women and older people. I never told them I had a disability as it is "invisible" or at least was at the time. You also pay higher interest and compulsory default insurance if you are poor.
Service dog-$ 20,000 Wheelchair- $ 6500 Smart drive-$ 6500 Medication- $ 3000 Accessible vehicle-$ 6000 (had to buy a new vehicle last car didn't work) Ada accessible apartment- $ 2000 a month Up keep on a service dog- $ 100 per month give or take.
I'm preparing myself for a big operation where my shoulder is getting fused too my shoulder blade I've had it done few years ago and I didn't prepare for it so I gotta buy adaptive equipment, clothes that are suitable for after my operation etc n it's very expensive I'll b having 70% movement in both of my arms so I won't be able too lift my arms above my head so finding easy too wear clothing is gonna be fun 😏😏😏
Hi my name Marie, and I'm wheelchair user I think everything that you just said is true and I think is annoying and apsalute joke what we have to do for everything I also don't see why we have to do anything like paying extra.
My pt was 300 dollars a session braces close to 1,000 each I'm super lucky that my parents have good Insurance because i also have extremely expensive meds and scans and disability aids I'm currently 15 and I have 3 pairs of crutches and a wheelchair and so many gosh darn braces.
I've had to have family pay out of pocket for a wheelchair and a walker and soon another wheelchair and a cane... As well as food I can actually eat that doesn't make me ill that isn't cheap...
Housekeeper, landscaper, wheelchair repairs, larger car than I would have picked just so I can get my chair in the car, toilet riser, shower chair, pull out shelves in kitchen, etc.
Assistance dog feed, insurance, grooming, my own inco bits, I prepay my prescription otherwise it would be over £100 a month so the pre pay certificate works out cheaper then I'd be paying a year power to charge my electric wheelchair, insurance for my chair, extra heating, or water cooled fans as I can't control my own core temperature, bits for doing my physio at home, window winders so I can open and close the windows myself
In my “past life” I worked as a physical therapist and knew here in the states that Medicare and most insurances will pay 80% of medical equipment. What I didn’t realize until I myself became disabled is how much the 20% actually is that the disabled person has to come up with. Anything having to do with medical the price seems to go up 500% just because it can. There is a certain bandage I like that is 3 times more than the same bandage I came stumbled onto in the pet store. Really?
God yes, and anything that is adaptive equipment is exorbitant eg: kettles, cutlery even. In Australia most funds only cover 60%of the cost, except for single vision spectacles. So that can leave you quite a bit out of pocket to the point you question what service you really need.
This made me realise how fortunate I am in many ways - fatigue means I can just about drag myself to work part-time (thank goodness for taxis) and that's it. I live at home with my parents, can do personal care myself with a few aids, and don't have the energy to even think about trying to do much else (except some online stuff things on a good day). So my life is not very expensive ... but nor is it much of a life! *shrug* Although, 4 years into being chronically ill and a GP *finally* agreed to refer me to a secondary care NHS service, so I might have to start paying for parking for appointments when I ever hear from them! I work in a school so I might try to go out or do something different once in the longer school holidays, but I feel even the extra expenses incurred are still outweighed by the money I don't spend by not getting to go anywhere or do anything the rest of the time. Silver linings ... (I know it probably doesn't sound it from what I've just written, but I do have a positive outlook, honest! I live my life looking for what I can do and appreciating it, just the above paragraph is the reality of it.)
Just to add after thinking a bit longer, if I'm ever able to get some kind of mobility solution - standing and walking are the hugest energy drains for me - I'm well aware that I will likely have to use my savings (most of which were a gift) to purchase something that actually does give me some independence. Oh, and heating for sure - my electric heater will be on continuously for at least 9 months, and will be on at some point in each of the 'summer' months. I have found stuffing a hot water bottle against my torso in between two of my many layers is very effective though, year-round. Helps keep the heating dial down a notch! I was very fortunate to 'inherit' my sister's exceptionally warm/insulating duvet when she moved out, but before that I used to have multiple hot water bottles in bed to try to reduce the need for heating at night. (Still use one, with the current duvet.)
Imagine having to pay someone just to change a light bulb 😕 My mum was disabled, but living in a third world country, the government didn't assist in any way. Well, apart from a small monthly grant. I believe its a tad more now, but before she passed away, the amount was ZAR1100.00 which was less than GBP75.00... Per month.
Oh, I just remembered one more thing, a quotation from a German former athlete who is now in a wheelchair about looking down on not working/"What are you worth?" etc.: (rough translation) "Well, actually when I think about it, am I not worth more than an able-bodied person when looking at the economic value? After all I give an income and job to all these people whose help I need because I am in a wheelchair. What would they do without me/us?"
Yes, and not infrequently with HEDS we get insulted by some of these "medical professionals" who know diddly squat about it. Includes not just nurses but physios, podiatrists, doctors.
As part of my community I have turned on “community contributions.” I would be thrilled if you would like to add close captions, translations, and subtitles. Im all about accessibility for everybody. I'm working so hard on my channel to give you the best content I can make. Lets work together to reach more people to inspire, motivate and entertain. Gem
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Wheelsnoheels - Gem Hubbard in Alberta Canada I have cerbal palsy and I have to pay for pretty much everything you said in this video transportation is one of the biggest expenses I am lucky for the fact that I do have a spouse that is amazing that helps me with help around the apartment
I could think of so many things to include in the cost of being disabled especially with multiple disabilities...incontinence supplies are a big deal but the thing that has thrown me for a loop most is being hit by a car. I'm still digesting this it was on December 20th this year 2019 thankfully I am fine I feel absolutely blessed to be alive however my ultralight was completely totaled. Ever since I've been working with Community programs getting donations and trying to get a proper chair back which is really challenging because I need my chair to get around. The Loner chair that I've been given to use in the meantime is extremely hard to control and regularly tips backwards. I have autoimmune disease and I can still walk a little bit so my insurance will only give me a chair that allows me to get from my bed to the bathroom but not get around outside. I don't know about you guys but only going from my bed to the bathroom isn't something I'm interested in. Eventually I will get there but I also need a chair to use like yesterday so it's really frustrating and without a chair it can feel like it's lasting longer than it is. when I have told able-bodied people that ultralight chairs are 1 to 3,000 for even a semi suitable one they act mind blown and say yes but your insurance covers that?? They definitely don't get it.
@@addieloveswheelies5672 Yes in Australia the government scheme only covers mobility aids for use in your house. So people with mobility issues don't need to go outside. Give them aids so they can do things like buy food, clothes, shoes, themselves. Maybe even get a job or study??
Service dog, training, food, treats, bedding, harnesses, bowls, vet bills, and anything else your dog may need and you may need to train or use your dog
Yep. Bet like me you never asked for this incredibly expensive condition and it’s enormous toll: financially, emotionally, physically, endless doctor appointments, etc. Still try to maintain positivity and you as well. Wishing you a happy life. Thank you for the comment. It really resonated with me.
I completely agree with the point about wheelchairs. People don’t understand that to get a slightly decent one that doesn’t fall to pieces when you touch it costs. A lot.
Krazie kat yes. When people say ‘your wheelchair is worth his much? But I can buy a wheelchair from Argos for £50’ and then you have to explain the difference an active user chair has.
I worry about needing an "off roading" one for festivals and stuff!
@@AmberZak83 Yep, quality costs. Healthcare costs a lot even if you are in a fund. Though some years I've actually made a profit from being in a fund!
Hi Gem, Here in Germany it's much of a journey to get a wheelchair: see the doctor, get a prescription for the wheelchair (and the prescription has to be for the exact type or whatever the wheelchair has to be,even though I don't even know which brand, height, wheels and whatever I need!),then see a wheelchairseller to measure for the wheelchair and then sent prescription to the health insurance company to let it approve. Which takes lots and lots of time and then, when it is finally approved (but during approvement lots of calls and questions........very stressfull) waiting for the new wheelchair. My walking got so bad so fast in the past months that I started applying for a wheelchair in November last year and it is still not here. So I am stuck at home.
I guess, curing a depression must be much more expensive than paying faster for a wheelchair, mustn't it? And I am getting depressed by sitting at home with almost no social life around me.....
There must be another way for us to get assistance earlier and easier!
And I have to pay for VitaminB shots,which I have to inject every weekend.I got diagnosed with MS in 2012.
I am 48 years now, can barely walk, brainfog and vertigo plus Fatigue kill my days.
And when I am having a good day, which means I could go out see some friends or go shopping or whatever, I can't cause there's no Wheelchair. The walker sometimes isn't enough. Oh, by the way, I bought the walker myself, cause it would have been almost the same procedure as the wheelchair is now. But the wheelchair is much too expensive for me.
Thanks for your videos! Have a great start into the new week! Greetings from Germany, sincerely Britta
Hi Britta. Thank you for your comments. The wheelchair process sounds similar to the uk. I hate having these extra costs. I hope that we can raise awareness. I hope you get your chair soon. xxx
That sucks Britta, i can relate. I live in the Netherlands and my wheelchair and handbike application was in November 2015. Now finally getting somewhere and receiving both within a month. I hope you can get yours soon as well! (hugs)
Hi Britta, I am so sorry you are going through this. I am in America, and at least with Medicaid, it is the same way. I asked on Facebook if anyone happened to have one at a discounted price, and someone actually donated one to me. I am so very lucky. I wanted to suggest this idea to you, because it is important to get out even for just a short outing when we can. If you need someone to talk to, please let me know. I hope you get your wheelchair and get to go out soon. You may also consider some basic biking gloves; I found that is easier to wheel with than hurting my bare hands.
Britta Roth I know how you feel about not having a social life I feel the same way because my friends left shortly after we graduated from high school and my family doesn’t care enough to even check on me I have no social life either I get extremely depressed a lot
@@MorganB101 Yes, even getting out to do something like shopping helps. I wish I'd bought aids for myself earlier, especially the rollator for large mall shopping.
Voting somebody like you in the parliament would make the change we need, because if environement is made good for disabled, is good for everybody else.
People is made by children and elder as well, and all of us will became (hopefully) older and more fragile than just productive and adult consumer
I agree with you. It is hugely expensive to be disabled. If only the average person know this. I can vouch for all that you said as a wheelchair user. Thanks for raising awareness of this topic.
You are amazing... I am from Canada and we use to be able to get help with the cost but, now it seems that everything is being cut. Couple of years ago my OT(occupational therapist) suggested I get a power chair, a shower chair, and a walker, When I applied for funding I was turned down. I am on disability and barely get enough money to pay my bills so this was very stressful. Thankfully I have an adult son who took it upon himself to pay for what he could. I also had a friend find someone who was giving a power wheelchair away. I have what I need now thanks to the people close to me. As much as I appreciate them it bothers me because I pride myself on being independent. Thanks again for sharing.
Thank you for sharing your story. xx
Being on food stamps and having to pay for super expensive food just because I'm allergic to normal food and having to pay for a nutritional supplement where I only get 4 bottles for $9 and I have to drink one bottle a day or more if my stomach can't handle food I also have to pay for things related to my wheelchair I also have a limit on how much my braces can cost that my insurance company will cover so then I'm left with the leftover cost of my braces I have also had to pay for finger braces because my insurance company would not pay for them cuz according to them my fingers aren't disfigured enough for them to pay for me to have nice braces that are $50 each so I have to pay for plastic because I can't pay for silver ring splints and my insurance company covered my glass frames but not my lenses so my lenses would make me be able to see I have to pay for and most people don't understand that glass lenses cost over $200 when you can't see
Thank you for sharing. There are alot of "hidden" costs. xx
Do you have EDS
So glad you addressed this 🙌🏼 I’ve had to pay for my power chair, my stairlift, my cleaner, braces and joint supports. Even buying clothing that’s easier to put on. Servicing for my power chair and stairlift. I could go on, the list is endless 😩
This is such an important video, thank you! I have to pay for a wheelchair, shower chair, walker, one of my meds isn’t available on the nhs, and also someone to go to appointments or just out with me since my condition makes me faint on a daily basis so I’m not safe on my own. And there’s so much more that people just aren’t aware of! Thank you again for bringing light to this topic/issue!
Ps, Not sure if it’s easy for you to change but there’s a typo in your thumbnail! Id want someone to tell me so hope this doesn’t come across as rude! Thoroughly enjoyed this video 😊 xx
Thank you for watching and sharing your costs. xx
Oh poo really? I checked it like 100 times lol. Im so dyslexic. let me know what it is and ill see if i can change it. thanks for letting me know. xx
Wheelsnoheels - Gem Hubbard it’s okay! It happens to the best of us! The a in disabled is missing xx
The note about having to hire services for home maintenance that most able bodied people would attempt themselves to save money is something that often effects me. I rent so most things need to go through the landlord anyway, but simple things like cleaning the windows before moving out, my friends all rented a jetta and hoses it down themselves. I was busy calling cleaning companies for weeks trying to get a quote that was lower than $120, since I was already having to pay for steam cleaning as part of the lease.
I am very fortunate to have strong social connections, so I ended up paying my friends with pizza to come help me. But if I was socially isolated, I couldn't have afforded to clean my flat.
I know all too well the cost of being disabled. There are so many extra costs people don't think about. I think you covered quite a lot.
Great video gem!! Really hits it home how much disability costs. So many people sadly think it’s a free ride but it’s not.
There are so many things the government could stop doing that would benefit disabled people in the U.K. but I think compelling energy companies to discount in some way the costs for disabled people would be a massive help to the monthly outgoings for a lot of people.
Yes I think you are right on the energy part of things. especialy as i have it on about 10 months of the year lol
They have warm home discount but they need to do what my water company does. After I provided medical note saying I use more water for disabled reasons my bill was capped. Don't get why electricity and gas can't do same!
There is a slight discount on gas and electricity here in Australia by the energy companies, but I found I had to keep telling them I was on a Disability Pension. In Brisbane Qld Australia, the Council also discounts rates and I think for seniors, which I also am.
So far, crossing my fingers!! Insurance has covered most of the expenses. There’s some medication that insurance won’t cover sadly. Home modifications were out of pocket. E-Stim therapy appointments were expensive!!!!! Adaptive sports stuff like my rugby chair and in the future a racing chair are crazy expensive!!!! Knock on wood insurance will cover more things in the future!! But that’s most of the stuff I can think of..... loved the video🤙🏼 I’m a C6 incomplete btw♿️
Oh yeah sports wheelchairs are crazy!!!!! fingers crossed most of your expenses are covered. :) thanks for watching. xxx
I still don’t have handicap vehicle at all I can’t afford it I pay for some of my medical supplies I would give anything for a car but doesn’t look like it’s going happen anytime soon I don’t live in a handicap house either it’s frustrating glad I found someone who knows what I go thru
Awww it sucks so much. Im so sorry to hear that. I hope you are able to find a little independence some day.
I feel you so hard on this! If I hadn't lived in a very specific place at the time I got stranded in my inaccessible apartment and almost died, I wouldn't have my powerchair or any other adaptations today. Unfortunately, I can't say where I live due to safety concerns.
Excellent video Gem. Liked and Shared!
I think we're lucky. On average - as a household I am paying out directly £120 a month just on prescriptions. Having the heating on for longer adds about £30 - £40 a month to the gas bill. There's also the transport costs. I get Mobility so I'm just paying for fuel and servicing and that comes in at about £130 a month - where I can use the car, failing that taxis are a minimum of £4.50 a time adding £18 a month. That comes up at £308.
Ignorance is not restricted to the general public either: "You're in a wheelchair. you obviously don't exercise!" - and that from a GP! The fact that I have a bike odometer fitted to my chair and I'm regularly clocking up between 5 and 8 km a day didn't seem to impress her.
Don't talk to me about Dr lol!!!!
Have you see the prescription monthly plan? Where you pay x amount a month but you can get as many prescriptions as you like!! woo party time ;)
Oh thank you for sharing. It really helps push the awareness out. xx
Have you looked into a prepayment certificate for your prescriptions? I have over 10 prescriptions a month and save a fortune by doing this. It's worth looking into, if you haven't already.
Definitely get a prepayment certificate for prescriptions. Around £10 a month for as many as you need. You shouldn't pay servicing on a motability car either? That worries me! It's included in motability xxx
Totally get you on the wheelchair, mine is powered with specialist seating and tilt to reduce angle of pressure on the spine. Insanely expensive. Travel costs are nuts, because I need a wheelchair accessible vehicle for the chair to drive in the back of which uses more fuel and you need to travel further to find parking that the vehicle will fit in as well as places with suitable wc facilities!Yes there is government help but it doesn’t cover anywhere near all of it. I have a true "form" and "brown envelope" phobia thanks to certain uk institutions that will not be named. So much isn’t covered in the uk, specialised cutlery, bathing equipment, manual handling equipment, specialised pressure care bedding and seating. Allergy free foods, gut friendly foods. Cost of care. Hospital parking is the bane of my life. By the way, why the hell are ramps so expensive? Luckily my O2 is on the nhs. I could lay make it through the day without my electric hot pads and heated blanket. I cannot afford massage or acupuncture for the muscle spasm so heat is my only help. I’m banned from hot water bottles because my pain levels mean I cannot feel when I’m burning and I’m covered in blister scars! Also there is the cost of hygiene and bathing cleansers when your skin is sensitive and fragile due to your disabilities you can’t just use any old shower gel! Add into that needing the installation of a wet room because you can’t get in or out of a bath and need to be showered in a seated position! The list is endless it seems.
Thank you for sharing. Yep there really are so many hidden costs! its insane. :(
Yes to ramps! Soooooo expensive for what they are.
I’m also a power chair user. I have a wheelchair accessible van and although the set up is extremely high the fuel costs are actually no different to that of a car. In 2018 my van cost 13p per mile.
I have a condition that isn't recognised in my country so the only thing I could do is get a good illness insucerance (something like that ) which is about 200 euros a month in addition to that I cant pay for all my medication that is not insured but atleast I get something against the pain. My friends are always shocked when I tell them the price of something, thinking that as a disabled person you just get it handed to you .NOPE ! But Oh well soon I'll have a good wheelchair and after that I'll be broke AF for a while 😂😂
Having a good wheelchair makes such a difference. Thanks for sharing. :)
I bought an ICE Adventure HD trike (3 wheeled bicycle) to use to regain cardio and muscle after spending 12 years in a wheelchair, it costs as much as a decent used car, over $5,000, before the modifications I also paid for to make it easier to get on and off. Without the trike I would have never regained enough cardio to use the prosthetic leg, much less the muscle mass.
My other option for physical therapy was a trip 90 miles each way 3 times a week to use a stationary version of the same machine. Using a conversion van (wheelchair lift equipped) getting 10 miles per gallon that would have been 18 gallons a day 3 days a week at $4 a gallon or roughly $216 a week $864 a month for fuel alone. Plus 3 to 4 hours a day driving ( I could barely manage an hour driving before needing to lay down). And just to put this price in perspective I was receiving under $1,000 a month total income at the time.
Just found you on utube thanks you help me realize the costs I pay are real cost is. massage no one believes how important this is and the benefit I gain from this it took two years to get funding for incontinent product as I was spending so much it so help will be following you
It's so lovely to hear someone else that has massages just to keep moving. It drives me mad when people think I am off for a lovely relaxing massage each week. When actually it's very painful.
I stopped going to a physio who always did painful massage that took me a week to recover from. A massage therapist I see is much better and I feel better for up to a week afterwards. Even helps with allergies and lymphoedema as well as muscles.
First of all I really like your channel I really admire u ❤
I'm not american/english and in my culture groom buys jewellery to the bride as a wedding gift and when I had to be operated my mom had to sell her bracelets which are the first gifts my dad gave her to pay my operation I know maybe bracelets dont cost much but it is really painful to know that my mom gave up on smt special for her bc of me it really hard to stand mentally
Awww bless you thank you for sharing. Its really good to get different perspectives on this in different cultures. I can understand how you must feel, but speaking as a mother I would give up anything to insure my daughter is healthy. I know your mum feels the same. A child is worth more than any diamond, gold or silver. I hope that helps you. xxx
Wheelsnoheels - Gem Hubbard thank youu so much❤ It really helped and also thank you for your reply it is worthy for me cuz I know typing takes really big amount of your time❤
xxx
This is really interesting, I live in America some costs are the same and some are different but I definitely think something the government in either country could do to help more if you have a wider variety of services for different ages and different type of disabilities.
"What, that's not included in the package?!"
That made me snort out my tea!!! Xx
You are so right. The ammount of stuff you have to pay for is ridiculous. And plps doesn't come close to covering a fraction of it. I'm always cold. And the heating bill was a telephone number lol. I was turned down for a electric one even though stanmore hospital told them thats what i needed. So I'm saving for a wheelchair size one. There about £5,000. When i could walk i did drive. But not now. I might take lesson to drive a adapted car in the future. But at 62 i don't know if i should bother. Great video. X
Oh you should drive again. Its so easy. have you seen my how i drive video? th-cam.com/video/D61niRT2pPo/w-d-xo.html
If you can already drive, its very easy. And 62!!!!! Thats still young. let me know how you get on with driving. :)
Hospital parking! 😡 I’ve not got a blue badge but have been told I am eligible for one, but even then my hospital has barrier controls, there is a way to get a free exit ticket but you have to go to the depths of the hospital, hunt down the admin department and then find the relevant person to give you that ticket. So I have to pay for every appointment (neurology consultant was then 3 hours late so we were there for 5 hours) and when I’m admitted and have to stay in my mum stays most of the day, at roughly £10 a day, not including her having to take the days off work.
I’m lucky that the neuro team from Southampton come up to salisbury which is closer to where I live so my travel costs are a bit less.
I also run through a lot of electric, mostly in the winter on heating and lights as well
Love your channel.... new subscriber... I’m from the US....I have a recumbent trike that was extremely expensive and as you know there a lot of mechanics involved in a bicycle however my manual wheelchair cost twice as much as my recumbent trike and it just has wheels that move. I also have a service dog and he requires quite a bit of food per month to live and of course I could feed him that dry kibble stuff that will kill him but I’ve chosen to feed him a real food diet so that I have a service dog for a very long time, therefore I spend a quarter of my income per month on my service dogs food alone. Hand controls very expensive, but necessary. Hot pool therapy. I could go on but you have the idea. One of the biggest problems I have found is getting any kind of help for “good” durable medical equipment here in the US is almost impossible.
Thanks for sharing. I didn't know too much about service dogs, and have been shocked that you still have to pay for all the training, food and vet bills. xx
I've got Late Stage Lyme Disease and co-infections. I have to pay for every visit with my Lyme Literate Doctor (most doctors have no clue about Lyme), all the lab work to diagnose my condition (over $1000), all the treatments my Lyme doctor prescribes (insurance doesn't cover lyme treatments). Plus paying for my special diet with constantly rotating food allergies. My mobility aids (power chairs, manual chair, crutches, cane). An AC/Heating unit. My service dog and all of her training and care. Taxis to and from appointments. Deliveries of my groceries and other supplies. Shower chair, bedside toilet chair. If I need a carer beyond the 27 hours a week the state pays for, then I have to cover that myself. Plus if my carer needs something to care for me better (like better grips on the wheelchair handles) then I have to pay for that as well. Also throw away dishes and spoons and things because I can't wash dishes most of the time. There's probably more, but it's really depressing to think about. Especially since I can't work and haven't found a way to make regular income - it's a nightmare! But like most disabled people, we figure it out. Thanks for this video
I have epilepsy and A-Typical autism and for many years my dad use to have to pay to take me and him on the train to London, the underground to great ormond street children’s hospital and then once I turned 16 another hospital further away. This send on for 8 years, and we had to go every couple of months. All that travel expenses really must have added up for my parents. We. Would have also had to pay for food and drink whist we were out as the time we were out was often many hours.
Then once I turned 18 my dad would have taken me to our local hospital where he had to pay for parking. Thankfully this was only 1 to2 times a year. Now I’m lucky enough to just have a yearly appointment and blood ready at my local doctors surgery just down the road a few bus stops away and I have a bus card due to the fact epileptics are not allowed to drive.
Thanks for sharing. I know exactly what this is like. The costs really do mount up. x
Yes, parking fees are exorbitant as is food when out if you are on a small income / pension.
There are several hair salons having days when you can come in to donate hair (f.ex. to cancer patients) and you get the haircut for free. Why not put the idea out there to once in a while have a day where they go to disabled persons' houses for haircuts without extra charge or for free?
That's a practical suggestion that came to my mind right away. Enjoy your videos, thanks!! :)
And the travel to and from hospital appointments !!!!!! X love your channel !!❤️
And the time if you have to travel by bus as seeing ophthalmologist and can't drive. I would come home exhausted and need a few days rest to recover from walking and changing buses.
I had an NHS wheelchair and never used it as I could hardly move it it was so heavy. I bought my own which is so much lighter and more comfortable but not cheap. I also use a mobility scooter and since a few months ago I lease. I used to own one but with insurance, batteries yearly and breakdown and recovery insurance used to cost a fortune, now it’s all covered by the lease but not cheap.
I have to pay for isotonic drinks (they have to make up half of my fluid intake), acupuncture, deep freeze, paracetamol, physiotherapy, osteopathy, personal training, compression leggings which are like £30 each and I have to wear them every day, travel costs, hospital parking and I’m starting CBD treatment so that’s gonna cost loads too! I also my parents have to pay parking and fuel costs to visit me in hospital.
Because my doctor and insurance are being frustrating I am looking at buying custom wheelchair out right that is the cost of being disabled. This does not include the splints or the forearm crutches I have bought outright. Or my monthly meds or the cost of all the doctor's appointments to get diagnosed and I can't even do pt because we can't afford it
So many extra costs!! thank you for sharing. xxx
I'm incredibly grateful that most of my accessibility needs are paid for by Veterans Affairs.
They provided my knee brace, my second manual wheelchair (I bought my first before I could be seen by my doctor), I just had somebody come today for a stairlift and transitions ramps and I'm supposed to be seen next month for a power chair option. I would still be virtually immobile, practically living in my recliner, if it weren't for them footing the bill.
Now, if only I could get them to take diagnostic care as seriously. 🙄
crutches and canes went through a couple different ones until I found forearm crutches that allowed me to at least get around the house. Then a rollator for out of the house because I can only go a short distance with the crutches. I need a wheelchair but that will be out of pocket I need an adjustable bed because I can't lie flat and I'm tired of sleeping in a chair in my living room. It is a toss up whether I will get the wheelchair or bed first both are expensive. Then there is all the little stuff grab bars for the shower, a shower seat, wipes, incontinence items, compression socks and bandages that need to be replaced frequently. Shoes that are soft and deep to accommodate a swollen foot and orthotics or bandages. Oh and put the word orthopedic in front of a shoe and assume the price is going up anywhere from $100-200 though I was lucky to find my first pair on clearance. My local hospital has free valet parking if you have a disability placard for your car so that helps. But I could probably go on all day with just the little things I buy every month. I can't drive but there are a lot of places around me that will deliver groceries but it is a 3rd party company working with the grocery store so when you buy food from the app the price is higher for the food itself then in the store then delivery fee or yearly membership plus a tip for the driver all make groceries much more expensive. 1 store does order and pick up that doesn't raise the price so I try to do that if I can get a ride to the store.
Not being able to work full time. Having to attended assessments or go places to get people to help you with forms. The mental, emotional and social cost of isolation.
Thanks for doing this what we as disabled people have to payout gorbadic things x
I’m a type 1 diabetic. I have insurance but still have to pay for large parts of all the supplies I need to live. My insulin is ridiculously overpriced, my pump is $8,000 , I have to have new pump supplies to change the infusion site every 3 days, I have a continuous glucose monitor, and tons of other supplies. The cost of all this is truly insane, as I am sure it is for other disabilities. 💕
Oh wow thats a lot. And you had to pay for the pump? My sister is type 1 too, bu everything is covered by NHS. xx (national health system)
The things I have to pay for as a nonsymptomatic hypoglycemic, tight tendon person is, physical therapy costs, service dog, training, anything having to do with a dog at all, doctor visits though most of the time insurance covers doctor visits it hasn't been the case due to circumstances, and I've even been told that I need to start saving money for a wheelchair. I have so many pairs of crutches in my closet and it is such a pain for my arms to be on crutches for multiple months at a time. Now that my tendons are getting worse in my ankles,knees, elbows, and wrists, doctors see a wheelchair in my future. I also have to get blood sugar meters, test strips and needles, which cost around $50~70 and one bottle of test strips can cost $20~40 alone.
In the stupid US I have to pay thousands per year for insurance and then thousands more to cover all my health appointments, tests, procedures, medications, etc. all while not being able to work a full time job because of my disabilities. Honestly what I'm forced to pay for insurance alone is ghastly then I still have to pay SO much for everything else. The US health system is such a scam and just worsens my conditions due to the stress it adds on top of everything else I have to deal with.
awwww Im so sorry to hear this. This is where the Uk is amazing. xx
Yes, illness and disability is the number one reason for homelessness etc in the US. Here in Australia, government subsidies are very little a lot of the time, or not what is needed, and insurance only covers 60% of costs.
I know I’m rather late to the dance here, but I’ll be getting my first wheelchair at 54. I have been able bodied all my life until I had to retire from truck driving in 2012, and fighting for disability in 2014 until now, 7 years later and ongoing.
Like I said I’m new to wheelchairs, and so far I have to have paid for my 2019 Toyota Sienna minivan with the power access side seat. The option for this seat alone is $5,000.00 above the sticker price of the Sienna, but the best thing everything is warranted by Toyota itself as the seat is installed there on the assembly line. Price for the Sienna very lightly used was about $38,000 out the door, as it was lightly used with 1300 miles on it.
I don’t know of any further prices yet as my insurance will pay for my wheelchair, but if so, they will be listed on my FB Group, Wheelchair Riders…
You have some outstanding videos Miss Jen, keep them coming and I will keep watching…
Cheers
-Gryphon
Disabled equipment or being Disabled in general as I am and can say from personal experience its a hefty price tag with all the different equipment you need
Much of this you’ve covered, but my disabilities are invisible so often people don’t know to look at me that I have these challenges. Just to show that you don’t need a visible disability to have an expensive one.
So first there are the costs associated with medical care - as a US resident that includes my premiums, copays (including for treatments like massage), and prescriptions - plus over the counter meds, equipment, KT tape, supplements, new things I’m trying to see if they help with pain, etc. And then there’s the costs I pay to pace myself. For instance, I pay more to have dental work done over several appointments because keeping my mouth open for too long causes pain.
Then there are the “conveniences” that many people consider luxuries but that are necessary for me - I can’t clean my house or do yard work, so I pay for people to do that because otherwise I’d be living in squalor - plus food delivery, both grocery delivery and things like Postmates, without which I often wouldn’t eat (because I don’t have the energy to prepare food).
I’m looking for a new house right now, and I’ll probably end up paying more for something all on one level as opposed to something like a townhome with all the bedrooms/bathrooms upstairs.
I drive places that some people would walk/bike/take public transit to, because I never know when I’ll have a flare and need to be in control of my exit strategy.
I have to pay more for higher end personal products because I’m allergic to the more affordable ones - this includes things like skincare/soap, cosmetics and even jewelry - if I want to wear earrings, they have to be 14 karat gold or sterling silver, otherwise I’ll get a rash. I know that’s trivial but there’s nothing wrong with wanting to wear jewelry.
I pay more for the assurance of ease, which usually means preserving my spoons. For example, when traveling I’ll book a nicer room, because I must have a bathtub (not just a shower) and I don’t have the capacity to “rough it” or improvise if something turns out worse than it sounded. Or I’ll pay extra for plane tickets because they leave at a better time or have fewer stops. Or if I’m even just going to a show in my hometown, I’ll pay more for tickets that guarantee a seat, or early entry, rather than having to stand in a line. These things are annoying for most people but literally impossible for me.
And let’s not even THINK about the $3000 I just dropped on a much-needed mobility scooter, which most people are shocked to learn are not covered by insurance, even partially. (Plus I had to get a more expensive scooter because I have to be able to lift it myself - no one to help me.)
Honestly this only scratches the surface. I am very fortunate in that, unlike many disabled people, not only am I able to work full time but I also have a pretty successful career. I am EXTREMELY privileged in that I can afford all of these things without having to fret too much over how I’m going to pay for a service I need. But I’m also acutely aware that this could all change pretty quickly. My mom and I have had several conversations about what happens if I’m no longer able to work. It’s a scary prospect but I know it’s a reality for a lot of disabled people.
Thanks for broaching this topic - most people have NO IDEA.
Yes, working just to pay bills and costs of having a disability. Paying for things that enable you to keep working to pay for things....
Gem you have done a wonderful job with this video! Amazing! I am away at the moment I have spent all day trying to find internet just to watch this... at 12:06am I finally got to watch it to the end! It was worth the fight over the internet to see it! Well done! Hugs x TC. Stacey K @RawAbilityLife
Thank you my love. Im glad it was worth the effort. xx
Love your videos!!! The only thing is you said “sometimes disabled people have to work harder”!! I feel disabled people always have to work harder as everything is harder for them then the average person!! ( depending on disability)!
Oh my goodness I can relate before insurance I had to pay over $500 out of pocket every month on medications alone to keep me alive... not to mention special diets... alternative therapies for things that prescriptions don’t really help with. And other ability aid things. And the doctor visits of course and the occasional ER trip. It adds up. Imagine this while being in university!
Thank you for sharing. xx
The thing i say to people is how many wheelchair users does it take to change a lightbulb
Luckily i have a husband who can do stuff too
And for bigger bits there is a subsidised handy person
I just spent loads on the equipment i need for rehab equipment so I can do it every day rather than once or twice a week
Thank you for sharing!!!
A basic power chair for me is between 2000-3000. I can use a FSA account that is money taken out of my paycheck for medical expenses like copays and any other out of pocket expenses. I use it to inch closer toward the perfect wheelchair for my situation. Manual wheelchairs are not good for my situation
I have had due to my multiple hidden disabilities. I have a quite a few of the cost talked about in the video. I also have some other disability cost that have not bing covered in the: disablity ID( to help prove I have disabilities with out have to carry doctors letter ect), first class rail tickets so that I have more space for my legs ( due to pain) and less busy ( less likely to have panic attacks), gym membership at a gym with a heated pool ( this is hard too find and often cost a lot more than normal), soft clothing such as cotton or bamboo (due to sensory issues) and adult sized tricycle (as I can't balance on a bike. I though I would add this as I whated to raise awareness that all disabilities wither visible or not have lots of hidden costs.
I have to pay for transport, wheelchair, supplements, food alone when you are sick and trying to be as healthy as possible is crazy, I mean people just don’t understand that our medical bills might be free but the nhs only covers the basics of like physiotherapy we have to pay for gym membership the same as able bodied people and we want to be healthy so yeah it’s crazy and the government and people in general don’t get it
No they really don't. and sometimes I just feel like they don't believe it. xxx
Wheelsnoheels - Gem Hubbard they don't I think my family literally think I have money to burn but it all goes to just staying alive and keeping me having a little independence when possible
my illness got so much worse just as i moved out and started managing my own finances... i still considered myself quite lucky to have access to as much money as i do but buying all my mobility aids recently, paying for pain medication, ER visits that insurance doesnt cover as well as even food that i can eat, it all took a great toll on my budget these past few months - even my tattoo savings went towards it
What is sad is that you just touched on the few main things. Adding up the many other small things ads up to $$$$$$$.
I know I'm way late but just found your blog and the biggest thing I pay for is mental abuse
I have a bone deterioration disease that causes my bones to slowly dissolve over time time
Which causes mobility to be at a minimum which means I can't exactly go run a marathon
I can still walk fortunately but for very short time before the pain is to much
And the cruelty shown to me when I get on the electric scooter to shop for groceries is
detrimental to me I have gotten to the point of not leaving home unless nessary I know this is nothing like being paralyzed but according to Dr's it won't be long I am prolonging it and staying as mobile as much as possible
Go luck in your awareness thing I wish you the best.
Subing now.
Many go through this especially if youre young. I'm nearly 70 and have been repeatedly abused "faking it" "special privileges" by a young man in a grocery store. My crime. Using a cane I paid a small fortune for myself as I had to get one that was the right height for a 5' person. No disability parking etc. I walked to the store nearby. I told him he was an "ignorant a..le". He apologised. Other similar experiences. Even ageist ones! Geez I'd never even think of treating someone that way. I also felt traumatized and loathed to go food shopping after these experiences. Now the next person who does it are going to wish they had never been born!
This is so very true. That's why I'm simplifying my life because of my disabilities and limitations. That's why I'm getting a motorhome class C or a cargo van or minivan to live in full-time.
Yes, suitable housing is difficult to get and expensive to setup. Interesting solution.
All my medications cost $150 USD a month (AFTER insurance. Yep, then I have to pay insurance costs in addition to that), I can only work part-time but am not eligible for disability because I make barely above the poverty line, and I have to get specialized care like frequent massages which aren't covered by insurance, because if I don't then my muscles seize up and I can't walk or sit up. The U.S. SUCKS to be chronically ill or disabled in.
I have severe stenosis, degenerative disk disease, nerve damage which results from damage during a surgery. I wear an AFO orthotic on my left left which I had to pay a big chunk of. I use catheters 5x at least a day which my insurance only covers a portion of. Every doctor visit and physical therapy appt costs me 45.00. I have a copay for my prescriptions. I use a forearm crutch to walk and because of a plate and screws in my wrist I buy my own ergonomic fore arm crutches which are some in pairs. I use only one. I have several different wrist braces for arthritis is certain joints some of which I have had to purchase. I also have back braces that I have had to purchase. I am very fortunate to have Greg's Mom help me after my fusion surgeries...three levels in my lumbar spine and this month for my cervical spine. Otherwise I would have to go to a nursing home for my recovery. I also have a shower chair, grabber and various other little helper things. (Under cabinet jar opener, special can opener etc). When I go to events such as a Renaissance Festival I have to rent a scooter for the day which is $60.00 plus a $100.00 deposit which is returned when you bring the chair back in good condition. That cost does not otnclude the ticket for the festival which is 25.00 for the day.I am not writing this out to complain just stating facts on what I pay. I figure whatever I need to do to keep functioning well is worth it! I make sure to take good care of my things so I do not have to replace them. Thank you for sharing such awesome information with everyone!!!!
I don't use a wheelchair for my walking disability (not sure what the evolution will ultimately result, so far paid $400 US for a knee scooter for the 3rd foot surgery to have permanent nerve damage from the previous 2 rendering my toes insensate), BUT I'm paying for my own service dog for a different disability. I pay for her adoption, food, veterinarian(she has allergies so monthly shots $95 US + $30 for the visit), treats, toys, food, cold weather shoes & clothes, hot weather shoes ($85 US), training, crate, seatbelt, seat cover, harness, and all other maintenance for my service dog. I was fortunate enough to find a non-profit training organization which discounted training fees, but it still costs $140 US per month just to train her. This is just for the animal, not including the reason for needing her. I am privileged to have stellar insurance which pays for my doctors, surgeons, shrinks, meds... But without them, I'd be in the hole. One missed shrink visit costs $75 US. I see my shrink every week! And I can't work. I used to take for granted being able-bodied. Now, I miss the halcyon days of standing in line for an hour for literally anything.
The financial cost is high, but the cost of my privacy is higher. Having a service dog means that everyone who sees me knows that I have SOME disability. And they feel that it is their right to covertly ask what it is. "What type of service dog is she?" I realize that is a privileged thing, to have a hidden illness that I have the power to choose to disclose it versus an obvious one. But I miss those days of being ignored. I use so much more mental energy on keeping strangers comfortable that I barely have enough to maintain my own issues... Another cost, my mental energy.
Thank you for sharing.Im surprised at how much you have to pay for your service dog! xx
In the US they usually cost from $20K-40k just to get a trained service dog. And they usually only work for 8-10 years before needing to retire in their "golden" years.
its crazy bc disabled person will need 3x as much money as abled bodies, but somehow the goverment think ssi is affordable
My meds cost me almost $400 dollars a year, which doesn't include additional costs for pain medications, probiotics/digestive meds and joint braces (when they need replacing). I also use a lot more hot water than most people because hot baths and long hot showers help ease my joint pain. There are also periods of time when my depression gets in the way of cooking so if I want to eat more than eggs and toast, I have to buy pre-made food and it brings up my grocery bills. I'm thankful I'm able to work full time so I don't have to worry about budgeting in the extra costs but I know there are a lot of others out there who aren't so lucky.
My daughter has cp/type one /epilepsy so we pay for alot thankfully we live in Canada so we have universal healthcare but things like wheel chairs standers and really any equipment is only partially paid for same with diabetic supplies pumps ect every thing is crazy expensive if it's medical... But she's a stubborn and happy girl that proves the doctors wrong all the time
Although it’s not completely a disability I have to get new glasses every couple of years as I cannot see without my glasses. My parents also need glasses. Add to that due to glaucoma a family member has just had to pay for laser surgery and cataract surgery on both their eyes as the NHS lost their details ( and so they were put back to the bottom of the NHS waiting list) and they were starting to struggle to see and if they hadn’t paid privately they may have gone blind.
Our family has narrow angle glaucoma issues too, going back several generations. I also have wet macular degeneration and need multifocals, computer glasses, and either fitovers or prescription sunglasses. I also get tint to reduce glare for migraines and improve contrast with the macular degeneration. Three rounds of laser surgery for glaucoma on both eyes at private ophthalmologist and over two years of injections into eyeballs for macular degeneration. Costed me a bloody fortune. I could have bought a replacement car. And it will be an ongoing cost for the rest of my life or going blind. Still getting injections but at a new ophthalmologist who is better qualified and charges less. He taught the one who was charging me a lot more and after two years without improvement I suspected was rorting. He charged more than any other ophthalmologist by several hundred dollars a visit and was pretty rude as well. My eyes are my main medical expense now, but with HEDS I have a lot of other medical issues as well. I feel like I'm on some sort of mouse medical wheel I don't want to be on but can't escape from.
I use a power wheelchair, so often people assume I got it from the NHS and think I'm living a very comfortable life on disability. I can't even get Pip. I'm still looking for a job that I can do with my health and mobility issues and rely on my husband. :(
The time it takes to apply for accommodations for things, such as school in standardized tests. Also, airline travel, accommodation processes can be quite onerous. Not a financial cost, but a time cost.
It's hitting harder now, in 2023, more than ever Gem. I'm indoors today because I can't afford to use my electric wheelchair too much, I need to do one trip and try to cover everything one day a week. Can't often heat my home, my electric throw is my saviour right now.
The accessible hair salon is the most expensive in the area. I pay more for my heating because I feel the cold more. I need a carer so if my husband works, I have to pay for care. Or my husband is my carer so he can’t work. I’m coeliac so pay extra for gluten free. Pre cut vegetables. Yes, hospital parking. I have so many hospital appointments. At least one a week. I also pay for a specialist doctor. Taxis. Lawn mower guy. I can’t get into my local cheap convenience shop, so have to go further to the more expensive shop. I need special hypoallergenic soap, and deodorant. I have to pay for my hydrotherapy.
I was lucky enough to get my active user wheelchair off wheelchair services though. I consider myself very lucky. It’s an argon 2.
I live in the USA. There ARE no grants or tax breaks to renovate your home home to accomodate your home. When l went from crutches to a wheelchair it cost us over $100,000.00 to make our small home accessible. Had to take out a home equity loan. There is no funding, nor is there any kind of tax break ir write off for all that money.
Where we live, public transit is not great. If you need to have a wheel chair accessible van, you basically end up paying double the blue book value . Hand controls? $7000, Lock down so your chair won't fly around in an accident? $3000, automatic ramp and kneeling? $20,000 to $30,000 . At least you don't get charged sales tax on the adaptive equipment for vehicles. Not true for homes or apartments.
I was really lucky as I managed to find a really good wheelchair (that works for me really well) for £299. And it's my favourite colour (orange) too.
Meal replacements, medication, vitamins, everything that comes with a service dog, chemical sensitivity mask filters, ear plugs, gloves to protect my hands in my wheelchair, and don't get me started on the new custom wheelchair I have to get.
The Canadian Government has a program for people with disabilities in which they can cover a certain amount of these costs, but it's a nightmare trying to get them.
I am just getting used to having my insurance premiums go up this year. That is a really unexpected cost of disability here in America. They can just randomly decide to raise costs and they never (that I know of) decide to lower them. I also have to buy my own mobility aids because I am not "disabled enough". I have fibromyalgia and have bought all of my own canes and I bought my mobility scooter ($1000) myself. I had to buy my own adjustable bed and mattress a few years ago. For your viewers in America, if you have a prescription from a doctor, even if your insurance doesn't pay for it, medical devices (including beds) are tax deductible. I have 12 prescriptions and see as many as 4 specialist doctors every month. I think most people don't think of how all of these things can add up quickly.
Its all so expensive. thanks for sharing. No i don't think I have ever had a bill saying, "good news we are lowering your premiums!' ;)
when you book a motel room they will probably charge you double or three times as much
because what you will get is a shower chair in the shower
that you probably won't be able to use anyway
we shouldn't have to pay any more for a motel room than anybody else
I’m a teenager and I’ve had to learn pretty darn early how to manage my money to be able to afford my service dog’s training and supplies for my disability. My parents help with food and all my medical stuff so I feel responsible for this. I’m worried about the future. Insurance doesn’t cover as much as you’d think.
Mobility aids - stick and smart crutches plus things like replacement ferrules, I’m trying to save up for a mobility scooter, pain relief- pain killers, tens machine and pads, CBD balm, heat patches
Aggg I get u my electric wheelchair cost a fortune
Me too mine $50,000 Plus my accessible vehicle was $85,000 I’m in the US I did have insurance to pay for 80% of the wheelchair and 0% of my vehicle
I just bought myself a wheelchair. It's a basic one, the sort you might see in a hospital. Now, I'm plus sized, so I had to go up and get a wheelchair that can hold at least 500 lbs (and while that should suffice, I am a tad concerned I may want to go higher on that, as while I weigh in the 400's, probably, I know that I also carry stuff with me, and I worry about that a little). A normal wheelchair on amazon can be gotten for 1-150 bucks. The cheapest one I could find for someone my size was $300. The nicer ones were in the 500+ range, and of course if I wanted something even better, I'd have to spend quite a lot more. Some of these things I was seeing are like used car prices, which is thoroughly absurd.
I don't know if I'll be using a wheelchair for a long time or not, as I was prompted to get one by getting a broken foot and being hobbled sort of got me to consider the mobility issues I've had for years related to my back and my feet*, and I decided that it would be best to have a wheelchair for those days where I just can't handle it. Maybe over time, as I go out, my health will improve and I'll be able to take long walks again without need of it. If that day ever comes, I'll probably just donate my chair to one of the mutual aid peeps I know in my area. I already plan to do that with the walker I got after I broke my foot, and maybe even the boot.
So I don't really mind the fact that I had to buy the chair. But then, I've got money. I have a job, and although my wages are down because I have to use sick time instead of working overtime like I used to, and I know worker's comp isn't going to pay full wages either. Still, I can afford this one time expense. But there are a lot of people who can't. There's also a lot of people with needs far more severe than my own who can't afford what they need because manufacturers have decided that disabled people are an excellent group to price gouge since these things are "medical".
(my left foot is absolutely atrocious, even before this breakage. I've apparently broken my ankle before without realizing it, have a deformed arch, a bone spur on my heel, and planar issues, in addition to my sciatica and knee issues on this side. My right side is ok, but it often gets overworked dealing with the messed up left side. I also have really bad circulation in the left foot, I think, as the skin on that foot gets extremely dry and scaley, and has for the last ten years. It's gotten better since I started wearing the boot, which makes me think maybe I need compression socks going forward as well)
I was under the misapprehension that people with a SCI got more help towards a wheelchair than those of us who can walk a bit, from other things I've seen it seems I got lucky to get 800 pounds towards mine. Definitely spend more on heating. Do you know about prescription prepayment cards, it's still a cost, but 10 pounds a month is better than it would be otherwise. I need to pay for people to do jobs in the house or garden that otherwise I would do myself, I became disabled as an adult, so I'm well aware that I used to be quite capable of putting up a curtain rail etc.
All A&E visits at 80 American at least 16 times. We had to buy my wheelchair $3000 American, all neurologist visits, all co-pays on IVIG. I can’t afford massages. Drugs run about $100 per month.
Insurance, Copays, deductibles, and non covered essentials. For instance my insurance is taken out about $450 per month from our paycheck, I have a $3,000 per family member deductible and a $5,000 out of pocket maximum to cover before I can just go without paying every time. Some of my medications are not covered at all and I cannot afford some of the treatment available for my conditions because they are not covered and are $9,000+ per set of treatments. Last year we spent around $18,000 in non covered and $5,000 in deductible and out of pocket for covered treatments. So we spent around $28,000 total. Last year is just a bit more than we would normally spend but not by much. I don't qualify for disability benefits due to my husbands income being over the limit they require for assistance. However I wouldn't exchange our system for a government medical system for anything. I want our system fixed. So that Doctors get paid fairly and our costs are cheaper to get treatment. I like being able to mostly pick my own care team and have the choice. I have found though that if you get a hold of some of the pharmaceutical companies they will give you discount codes to make meds more affordable. It is kind of a hack we discovered. Also, if you need crutches, walkers, braces, and other equipment that doesn't necessarily need to be custom, thrift stores, are an excellent source to get you through until what you need fits your budget. My insurance completely covered the cost of my custom wheelchair and smart drive, Thank the Lord! I wish they would cover the cost of a service dog plus training. :-(
I saw you recently renovated your kitchen so I'm bumping this post for ideas. Home accessibility is a core issue. For me, an accessible house was the standout cost. I had to move and ignore all the help2buy schemes with stairs. It didn't make sense for me to buy with stairs so I opted for a bungalow but that was a huge expense, often for retirees, not 30 something's. I blew all my savings on making it accessible inside. I still have to make it accessible outside and will likely extend to make more accessible but I've run out of money. It's a money pit. My peers can buy a house with a wish list but disability is a must have.
I'm disabled and single income. I have to keep on working whatever to pay the mortgage 🤢🫣🤯
I hate having to pay workmen for jobs I know how to do. Gardeners, cleaners, handymen. It's sooo expensive. I have to work yet I spend all the time and can't save like my peers.
The considerations inside and outside your home are so different. I keep dreaming of the day I can somehow entertain and transfer food inside and outside and host a bbq. I want an easy to get to outdoor area without feeling exhausted. To and fro and single level is a must. 👌
Another topic furniture height? I've expensive sun beds and sofas outside but they are too low and I struggle in them. So I am going to have to pay for custom platforms. Indoor solutions exist but no obvious garden solutions? So many solutions inside but being outside helps my mental health.
Ps thanks for all the amazing tips. Wish I had found your channel years ago. ❤️
Hi there, thanks for this video! I guess a lot of people don't know this. I'm currently receiving social security for my expenses. Since i'm not able to work. But that's minimal wage, which would be fine for a normal person. But i spend 100 euro extra for my medical insurance, about 20-50 euro for OTC medications, tapes and wipes (incontinence) about 20 euro and fortunately only 17,50 euro each month for cleaning help and my wheelchair. Oh yeah, and taxi's (special regional taxi's that go
Thanks for sharing. It really does add up. :(
Sounds about right.
Having no insurance, to say getting a wheelchair and transitioning to a totally different way of living (This does not include going to doctors, that's a whole different mess) has been nightmarishly expensive would be an understatement. What I have to pay for? Every single thing, and I'm in America, just to get that out there. I shouldn't be working.. But I have to, or I would just be screwed, to put it lightly.
Transport to and from the hospital, all the blooming time, at any given time! such a drain on the budget!
yep I can appreciate that. xx
Insurance deductible and coinsurance (7400 family deductible) and then 10 percent thereafter; out of pocket treatments that are alternative medicine, etc, Durable Medical Equipment (wheelchair/rollator, etc) --- and all the "special" accessories to go with them - some of which I still can't afford, Service Dog acquisition and training and upkeep, delivery service for items when I'm feeling too poor to go get them, etc, etc.
I have to pay for prescriptions and over the counter medicine, vitamins, supplements that's not covered by my insurance. I also have to pay for personal hygiene products related to my disability that's not covered by my insursnce. I also pay for public transit when I need it. I do pay for take out food from the local restaurants in my area even though I do have an accessible kitchen that I cook in, there are times where I feel like having a pizza, grinder, or seafood platter, ect. I have gotten lucky with my adaptive equipment as my insurance has paid for that so far, including a power chair..
Hi Gem have you considered having a mobile hairdresser someone come to your house rather than traveling miles and it would save you money as well , there is ways to budget being disabled as I am disabled myself , so I also know the true cost of being disabled but the benefits people say that you have to save your money to get things it's not easy when battery for my power chair costs over 550.50 for batteries but they is a place that you can get a grant to pay for batteries called indepence at home charity they pay some of the money towards the cost of things .Thought this might be helpful
because of the condition I have, I have to wear thigh high medical compression stockings they are £37 a pair for the good ones, and they need replacing fairly frequently.
Last year, I had over $13,000 in out of pocket health care expenses. This is even with a pretty decent private insurance.
wowzers!!!
You kinda make me feel lucky to live in Belgium!
I get a wheelchair every 4 years payed by the government, and not just a basic model, but really what I need. Last time my wheelchair was still in quiet a good shape, so I choose a mobility scooter (you know like old people use :)) and it is AWESOME! It gave me a lot of independance back, and lots of fresh air as well. And it was totally payed for by the government. The only thing I payed for were the adjustable handlers on my wheelchair, because my husband is, like in your situation, not only the love of my life, but also my caretaker, and he is really big, so the handles can go up really high so he doesn't hurt his back. But that was a 200 euro supplement I had to pay for myself. Also repairement costs I might have on the wheelchair are covered by the government. With a limit, but I never crossed the limit. Also toilethandles, ramps, bathchairs and so on are payed for by the government. Also adjustments to the house are partially payed for without a limit to your income. We also have a system where a caretaker (in my case my husband but can also be your parent or child or neighbour, ...) receives a monthly 130 euro to take care of you. It's not much, but it kinda covers the extra heatbills for instance. Therefore every citizen (me and my husband as well) has to pay 51 euro a year. A great example of society taking care of each other I think. So the UK can really make some improvements !!
For me, the greatest cost I have because of my disability, is the nearly double cost of my credit insurance. I have a muscle dystrophy that doesn't, in any way, effect my life expectancy. I never smoked. I'm not overweight. ... but still, to cover the mortgage I'm obliged to pay double as an able person, or no bank would give me a loan for the house.
And of course the extra costs for fuel, because public transport REALLY sucks in Belgium so I have no choice but to go to work by car.
thank you for sharing. xxx
We have carers allowance here but it is means tested depends on your income (in England).
Banks suck in that they often still discriminate against women and older people. I never told them I had a disability as it is "invisible" or at least was at the time. You also pay higher interest and compulsory default insurance if you are poor.
Service dog-$ 20,000
Wheelchair- $ 6500
Smart drive-$ 6500
Medication- $ 3000
Accessible vehicle-$ 6000 (had to buy a new vehicle last car didn't work)
Ada accessible apartment- $ 2000 a month
Up keep on a service dog- $ 100 per month give or take.
I'm preparing myself for a big operation where my shoulder is getting fused too my shoulder blade I've had it done few years ago and I didn't prepare for it so I gotta buy adaptive equipment, clothes that are suitable for after my operation etc n it's very expensive I'll b having 70% movement in both of my arms so I won't be able too lift my arms above my head so finding easy too wear clothing is gonna be fun 😏😏😏
Hi my name Marie, and I'm wheelchair user I think everything that you just said is true and I think is annoying and apsalute joke what we have to do for everything I also don't see why we have to do anything like paying extra.
My pt was 300 dollars a session braces close to 1,000 each I'm super lucky that my parents have good Insurance because i also have extremely expensive meds and scans and disability aids I'm currently 15 and I have 3 pairs of crutches and a wheelchair and so many gosh darn braces.
I've had to have family pay out of pocket for a wheelchair and a walker and soon another wheelchair and a cane...
As well as food I can actually eat that doesn't make me ill that isn't cheap...
Housekeeper, landscaper, wheelchair repairs, larger car than I would have picked just so I can get my chair in the car, toilet riser, shower chair, pull out shelves in kitchen, etc.
Assistance dog feed, insurance, grooming, my own inco bits, I prepay my prescription otherwise it would be over £100 a month so the pre pay certificate works out cheaper then I'd be paying a year power to charge my electric wheelchair, insurance for my chair, extra heating, or water cooled fans as I can't control my own core temperature, bits for doing my physio at home, window winders so I can open and close the windows myself
In my “past life” I worked as a physical therapist and knew here in the states that Medicare and most insurances will pay 80% of medical equipment. What I didn’t realize until I myself became disabled is how much the 20% actually is that the disabled person has to come up with. Anything having to do with medical the price seems to go up 500% just because it can. There is a certain bandage I like that is 3 times more than the same bandage I came stumbled onto in the pet store. Really?
God yes, and anything that is adaptive equipment is exorbitant eg: kettles, cutlery even. In Australia most funds only cover 60%of the cost, except for single vision spectacles. So that can leave you quite a bit out of pocket to the point you question what service you really need.
This made me realise how fortunate I am in many ways - fatigue means I can just about drag myself to work part-time (thank goodness for taxis) and that's it. I live at home with my parents, can do personal care myself with a few aids, and don't have the energy to even think about trying to do much else (except some online stuff things on a good day). So my life is not very expensive ... but nor is it much of a life! *shrug* Although, 4 years into being chronically ill and a GP *finally* agreed to refer me to a secondary care NHS service, so I might have to start paying for parking for appointments when I ever hear from them! I work in a school so I might try to go out or do something different once in the longer school holidays, but I feel even the extra expenses incurred are still outweighed by the money I don't spend by not getting to go anywhere or do anything the rest of the time. Silver linings ...
(I know it probably doesn't sound it from what I've just written, but I do have a positive outlook, honest! I live my life looking for what I can do and appreciating it, just the above paragraph is the reality of it.)
Just to add after thinking a bit longer, if I'm ever able to get some kind of mobility solution - standing and walking are the hugest energy drains for me - I'm well aware that I will likely have to use my savings (most of which were a gift) to purchase something that actually does give me some independence.
Oh, and heating for sure - my electric heater will be on continuously for at least 9 months, and will be on at some point in each of the 'summer' months. I have found stuffing a hot water bottle against my torso in between two of my many layers is very effective though, year-round. Helps keep the heating dial down a notch! I was very fortunate to 'inherit' my sister's exceptionally warm/insulating duvet when she moved out, but before that I used to have multiple hot water bottles in bed to try to reduce the need for heating at night. (Still use one, with the current duvet.)
@@musical3lottie I love my snugglies over my clothes. I wear them like a coat.
Imagine having to pay someone just to change a light bulb 😕 My mum was disabled, but living in a third world country, the government didn't assist in any way. Well, apart from a small monthly grant. I believe its a tad more now, but before she passed away, the amount was ZAR1100.00 which was less than GBP75.00... Per month.
Oh, I just remembered one more thing, a quotation from a German former athlete who is now in a wheelchair about looking down on not working/"What are you worth?" etc.:
(rough translation) "Well, actually when I think about it, am I not worth more than an able-bodied person when looking at the economic value? After all I give an income and job to all these people whose help I need because I am in a wheelchair. What would they do without me/us?"
Yes, and not infrequently with HEDS we get insulted by some of these "medical professionals" who know diddly squat about it. Includes not just nurses but physios, podiatrists, doctors.