The True Cost of Disability
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- Опубликовано: 4 июн 2022
- #disability #blindness #finance
Have you ever wondered how much it costs to have a disability? How the costs are measured? What's involved? Let's talk about how challenging it can be to access services, the insane markups, and the challenges that come with living with a disability. What are your biggest disability-related costs? What are your best solutions?
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Thank you for this video 💛
If you feel up to it, I would love a video on indirect costs... and also on hidden time constraints of being disabled. People can be so quick to judge disabled people who can't work full time, without realising that with society existing as it does, disabled people have to put in a lot of unpaid labour/time on tasks that nondisabled people do not.
Applying for social security / financial aid can be incredibly time consuming (depending on where you live), and depending on you employment, relationship, or housing status, you may not actually receive these benefits. Commuting often takes longer when you're disabled due to the the inaccessibility of public transport. If you're disabled, you're more likely to have to juggle regular medical or therapeutic appointments, and your personal or hygienic care routines may take more time. If you have limited mobility, the most ordinary tasks can take significantly more time and energy. And this is just the tip of an enormous iceberg... Yet people don't think about this before making comments about disabled people needing to just 'get a job' or 'work harder'.
Very well said. I will definitely work on that video. It most certainly needs to be said. The indirect costs are enormous and if you have health or therapy appointments to help manage your disability it can take a tremendous amount of time.
A simple exercise to help people understand the extra time required by a person in a powered wheelchair is to have them place one hand (preferably their dominate hand) behind their back every time they move while preparing a meal.
Then they must sit in a chair before they can use both hands. This includes every time they open the refrigerator door. They must move the chair from each workstation to the next before they can move anything else. This simulates a person in a power chair as they have one hand using the joystick as they move, and then they see how difficult it is to do simple tasks from a chair, and how often you must reposition the chair during the making of the meal.
On average it takes me 2.5 to 5 times as long to prepare a meal in my chair, as opposed to using my prosthetic leg. Simply not being able to carry as much from the fridge, requiring multiple trips etc for materials, having to reposition the chair in order to open and close the doors of appliances and cabinets etc it adds up quickly.
Being forced to move the chair constantly also helps people understand how clunky the process is in a wheelchair.
Also expect some broken glassware if you try to move too much at a time in 1 hand, a lesson learned the hard way as well.
And this only simulates a power chair, a standard wheelchair is much worse, especially a cheap transport chair which requires much more strength and both hands in order to move.
When my aneurysm occurred I was very fortunate to have good health insurance through my employer and I paid the extra for long term and short term disability insurance. (This is all in US dollars.) The life flight helicopter ride was $100,000 to go 30 miles. Specialized Neurosurgery, MRIs, CAT scans, and 5 weeks of life support and full time hospital care while I was in coma over $600,000. A year of physical and speech therapy $100,000. 5 surgeries from a retinal specialist to partially restore my sight $500,000. Cataract surgeries to correct the problems caused by the retinal surgeries $50,000. Laser treatment to fix a rare complication from cataract surgery $10,000. This happened before the USA's affordable healthcare act (that is a misnomer by the way) so my out of pocket was capped at $120,000. Anti-seizure medication that I must now take for the rest of my life is $487 per month.
To top all of that off I have been fighting with our government for 8 years for disability benefits. I have partially restored sight, partial paralysis on my right side, uncontrolled hypertension (my service dog Jack is a hypertension control dog since I can't take medication for the hypertension), and chronic fatigue syndrome on top of the seizure disorder but because I had only a 1% cognitive impairment thanks to my neurosurgeon, our federal government says that I can work in an office at a desk job (even though my physician disagrees) and have consistently denied benefits.
I can't take care of my yard so I have to pay a lawn service. I can't shovel my driveway in the winter so I have to pay for snow removal. I can no longer do my own home repairs so any time I need a repair for the house I have to pay someone to do it.
Thanks for sharing your story. It sounds truly harrowing. I cannot believe you had to pay $120000 for all of that health care. It's truly awful. I'm so thankful for universal healthcare here, although any medication or supplementals are most definitely extra and not covered.
It certainly sounds like the government has let you down in so many ways. And although I don't know your situation personally, I believe you deserve more. More help, more benefits, more support. I hope things improve.
I am not disabled but this make me sick. I have seen wheelsnoheels video about the true cost of being disabled and had the same reaction. Thank you for bringing this to people's attention ❤ ❤
Thank you for the support. I truly appreciate you being an ally and understanding the human cost. :)
Amen! The costs of specialized tech to help you get things done are expensive.
Goodness I wish it wasn’t but here we are.
In our community braille literacy is something that is talked about quite often; I was an avid real reader who stopped reading because I really needed a braille display and just couldn’t get my hands on one so I started relying on tools such as, Raelynn speak, Jauz & voiceover but at the end of the day my braille skills fell by the wayside simply because I couldn’t get what I needed so really what was the point in learning in the first place.
It's something I have been thinking about too. If we don't have braille available, if it isn't universally available or attainable for people there is no point, despite its many benefits. I hope its something we can address as we work towards universal accessibility!
@@UnsightlyOpinions I too learned braille growing up, but found that I learn and do better auditorily, let alone the difficulties of getting access to braille without government aid...
Hi Tamara, I hope this finds you well. Here in the states. We have a two prong approach to disability payments ( anything to make it more difficult) I am statutorily blind. I have posted my issues in your posts before. Here even the Government plays games. Because I was fairly successful in the past they approved me as blind for s.s.i.( social security insurance). That is for people that have never worked. Then low vision for s.s.d. ( for those that have). Why because with one they can limit your resources and bank account to keep you permanently poor. The other is because you can no longer work at what you used too. it also pays more. They have broken their own law in denying me for the s.s.d. and granting the s.s.i., Mercy. Using the same tests from the disability doctors office for each determination. I do not want to be on any assistance. Yet like you I have received immediate call backs from Jobs that liked my resume'. Only to be passed over upon finding that I am blind. GRRRR the frustration is real. I have an attorney to fight their silliness. However that is not cheap either. Some days it is hard to deal with it all as I was not born this way and have lost my sight in the last 3 years. pretty recent really. I like being independent and not relying on others. I just want to get some help and training so I can do for myself again. Sorry for the rant. but yes We the disabled community receive a over share of the poo on as I call it. I would love to start a coalition for disabled rights and fair pricing for accessibility devices and spaces. I am very new to this so I would not even Know where to begin any Ideas? P.S. for any one that is interested A disability almost always comes with a cadre of other symptoms other than the main complaint. For example Mine include. Retinitis pigmentosa, Traumatic brain injury, ocular albinism, tunnel vision, night blindness photophobia, Charles bonnet disorder, no depth perception, glare/haze, Starbursts, 20/300-20/400 depending, nystagmus, then I am diabetic 2, Asthma, yada yada. So no not a fun time. However I believe the best way to get on your feet is get off your butt. Grow up, show, up and never give up. Not easy most days but my struggles makes me better in the long run. I have to believe that. Any way enough of my gob flapping. Another Fantastic advocacy vid Tamara. Thank you. Please keep fighting. you help me too. Cheers.
I could not agree with you more. We shouldn't need to fight legal battles to attain basic supports. I'm sorry to hear of the challenge you've gone through trying to get that support. OA and RP is quite the pair of diagnoses to be sure and you deserve equal rights and opportunities.
I don't know that I have any magical suggestions to solve the issues, but maybe starting a company with transparency at its core would really make a significant difference. Show people where the markups go, what the raw costs are, and how the money is being used. I think that it would show that people aren't marking things up just for the sake of stockholders or bottom lines. I can't recall but I think someone just started a pharmaceutical company on that premise, Mark Cuban maybe? It's definitely a noble fight and I hope someone can do something similar.
@@UnsightlyOpinions Thank you for your reply, the Idea, and the lead. I always find you to be gracious and fair. I am well chuffed I will discuss this with my closest and see what can be done. Well Met again cheers Happiness and health to all you know and whom you meet. Cheers.
The SSI / SSDI stuff is a joke
The fact the government wants to keep you poor is disgusting because they do it to me too.
I would suggest looking into Able Account as it lets you save money and the social security office isn’t allowed to look into how much you have saved
The cat and mouse game we have to play is ridiculous, just because we have a disability? I’m not even a criminal or anything yet have to act like one just to survive
The cost for me to take a run of the mill phone call: $4000 for bilateral hearing aids that will probably last 5-7 years.
My biggest fear is something happening to my braille display like what you described. I was extremely lucky to be able to buy the first one. A second wouldn’t be possible for quite a while.
100% righ! Accessibility is a right not a privilege. Coannot stress it enough. Love you Tamara, take care!
Omg I loved this video it’s so true I always wanted and was told that a Perkins brailler and a braille note would help me learn braille but no one could help me afford it unless it was specific to a job like getting or keeping a job but only then would I be able to maybe get one I have autism with my blindness and it just makes me sick how much we as disabled people are told we are so lucky. Especially if you have a service dog
It’s unfortunate that there are so many conditions on receiving aid and supports. Sometimes you need to have those supports to find employment but the two shouldn’t be mutually exclusive. There’s lots of reasons a Perkins or braille display would be helpful!
@@UnsightlyOpinions Oh agreed I am so glad you did this video because I think people really think we are getting handouts but don’t truly understand how much we spend in terms of time and energy we don’t have to live our best lives and we deserve it. We as all kinds of disabled people deserve it just like everyone else. Oh and your tips on reading braille I am getting better a bit still better at grade 1 braille than grade 2 but its a start.
Thank you for covering this. Great video!
My pleasure!
Oh, you go girl! That is great information. I’m going to play this for everyone at our local blind organizational meeting tomorrow.
Thanks so much! I'm so glad you enjoyed it. Please go right ahead, and let me know what everyone thinks, especially if anyone has any suggested solutions! :)
Our local blind and visually impaired group listened to this today. It spark a lot of discussion. We have all experienced this, and are all hindered from doing things we would like to do and experience because of the exorbitant prices placed on the things we need and a lack of training on the things we do own, such as a cell phone, tablet, or computer. I asked about solutions to this problem and nothing was mentioned. The discussion then turned to the difficulties we have of being heard. In short, we agree that the prices we pay for assistive devices is, for the most part, restrictive and ridiculous. Thank you for making this video.
Great video! I have thought about the added costs and disadvantages many times.
Glad you enjoyed it! It's not a bright and happy subject, but very important all the same.
thank you. I love this one so much because i to have been told things like that and i have always said.it is not cheap to be blind!
It most definitely is not. I’m so glad you enjoyed the video. :)
Agree 100%
so much yes, the disability tax does exist and you wouldn't even know t until you start comparing what you can do by yourself with what companies make for people with disabilities. Much of this tax is generated not by the fact that we are a minority, but by the fact that these companies know governments will subsidise the cost, meaning they can charge whatever they want within reason. Charge too much and the government won't pay, charge too little and well, they're just not gonna do that... as nice as the "subsidies and tax breaks" we get are the actual hidden cause of the disability tax because these companies know they'll get theirs from either the government or those people with disabilities who happen to be successful.
Very true. It's expected that we can pay thousands because "health insurance" or "government programs" which not everyone can afford or take advantage of will cover costs. Most programs are over-run and only covering the bare minimum because there is such tremendous need and they need to assist as many people as possible not by giving them a full accessibility solution, just the bare minimum to subsist. Sadly it leaves so many with the sad situation of being stranded and unable to obtain life-changing solutions.
I looked at a power chair and then at making my own. The power chair was $15,000 minimum. Making a power chair that could move at bicycle speed by using e-bike components would cost less than $3,500.
How is this not addressed by price gouging laws?
I honestly considered the same thing! It’s insane what companies can get away with because it’s “specialized”
Government compensation for transportation?
This either doesn’t exist in the US or I don’t know about something
What we do have are these crappy short busses that pick you up and drop you off 5 hours before or after you’re suppose to get somewhere and that’s pretty much it
Uber costs an arm and a leg and I can’t afford it so I just don’t go anywhere
I would say transportation is my biggest challenge as well. One day it won’t be an issue but for now we are stuck with broken systems. I empathize deeply with your situation.
@@UnsightlyOpinions
Thank you. At least we will always have each other to share our experiences and struggles
Your videos DEFINITLY help me not feel so alone. Thank you
Haha! I had to take an extra private loan each semester to pay for the cab to go to school! E
Because the transportation service we have for disabled would eat extra 5 hours of my da.
And I am not even sure what tax break for the disabled is. I live in the US and I’be never received one. Or do they mean a $5 discount for a museum ticket? 😎 ~Irina
That is terrible! 5 hours is unreasonable for transport. I know they do have some exemptions, deductions and exclusions that lower taxes for some disabilities. I’ve attached the IRS page discussing this below so you can see if you qualify. :)
www.irs.gov/individuals/more-information-for-people-with-disabilities
@Unsightly Opinions Thanks!
Truly this remains an existing problem that could so easily be rectified with proper tools being funded and subsidized with Federal & Provincial Political will. Infuriating really, when we know how much of our tax dollars are squandered on trivial endeavours.
Well said!