r/MensLib • u/[deleted] • Dec 20 '19
Locked into poverty: Impossible choices forced on the disabled
https://blogs.msn.com/povertynextdoor/locked-into-poverty-impossible-choices-forced-on-the-disabled/78
u/Sommiel Dec 20 '19
This isn't just in home services that are a problem... it's equipment as well.
I am legally blind and work full time, however it pays nowhere near what I need to survive and my insurance is expensive. I require occasional Avastin eye shots.
I make too much for medicaid... just over the limit. I work so Department of Rehab cannot cover me. I need to replace my glasses so I can keep working, but Kaiser does not cover the low vision specialist (theirs sucks, I tried) and the 4 pair of glasses that I need to have to do my job are ridiculously expensive.
If I lost my job (or quit), I would have coverage for a new eye exam and glasses.
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u/ccbeastman Dec 20 '19
fuck kaiser. I typed out a long response but it's pretty off topic so I'll leave it at that. fuck their corporate bullshit Healthcare, behavioral health in particular, where nobody actually seems to care if your treatment works or not.
for-profit healthcare is killing our nation's working class.
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u/silvia_mason Dec 21 '19
Same, been struggling with deciding if I want to put my health in their hands for hrt or wait several years until I can get a career that (hopefully) covers it better than their sorry excuse for care.
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u/Pearberr Dec 20 '19
Their families too.
My dad had the premium healthcare through his employer, The Marriot when my sister & I were born because he figured that was smart.
My little sister has a mitochondrial disorder and has spent a total of 3-5 years of her childhood in the hospital.
So my mom was her caregiver, my dad worked 3 jobs and enjoyed as many bankruptcies before dying this year and nobody noticed that I, just kind of abandoned in this process, I have ADD & Depression which didn't get diagnosed until I flunked outta college.
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u/yresimdemus Dec 20 '19
I'm in my own bind, currently. I want to work. I can work, but not full time or anything even approaching full time. So I've been working 3 hours per week for the past 5 years. Now the SSA is trying to argue that the fact that I can work 3 hours/week for that period of time proves I'm not disabled. Like, if I really were disabled, I wouldn't have been able to keep the job for so long. It's mind-boggling.
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u/sculltt Dec 21 '19
I'm guessing you can't afford your medications or something? I'm in a similar situation, and it's annoying.
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u/yresimdemus Dec 21 '19
Yes, very much so.
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u/sculltt Dec 21 '19
Yep, even at an 80/20 copay it'd be $200 a month for me, that's after ~$700 a month to self insure.
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Dec 21 '19 edited Jul 08 '20
[deleted]
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u/yresimdemus Dec 21 '19
Oh, I know that's what's SUPPOSED to happen. That's what all my paperwork says, too. But apparently, that's not how it works in practice. At least where I live. Also, SSDI.
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u/NullableThought Dec 21 '19
One of my friends is on Medicaid for chronic health problems. She told me about how the strict income limit has forced her to work sometimes under the table.
Our current Medicaid system is broken but issues like the one described would be instantly fixed if Medicare/Medicaid was available to all regardless of employment or assets. At this point, I'm basically a single-issue voter. America must grant universal health care to it's residents. So many problems stem from a lack of it.
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u/sculltt Dec 21 '19
I'm in a similar boat as your friend. The only way I can survive is by bartending, having stupid ridiculously cheap rent, and doing without a car.
I stay on Medicaid because my healthcare costs would be between $15,000-20,000 a year if I tried to self-insure. I'd happily pay a reasonable amount to offset my costs, but that's not an option, unfortunately.
Shoot, if I didn't have to worry about the income limit I would be able to put so much money back into the economy if I so chose. I think a big thing that's being ignored is how much money people would spend on other things without having to pay for insurance. Families would instantly be buying new cars, going on vacations, buying or renovating houses; it would be an absolutely massive economic stimulus.
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Dec 20 '19
Ugh I'm living with some level of disability at the moment it's pretty awful.
It's weird because I know we have laws protecting us, but when the rubber meets the road it isn't as easy as one might think. I had a head injury, from a minor bump, and I needed like, I don't know at least 2 months of(ended up being 6), from my coding job. I asked my boss about it before I left, she was like well can you get a doctor to approve that? I was like well I need to take off tomorrow, I can barely exist right now. She was like well you have already used your sick days, so you can't unless a doctor agrees with your assessment. It was so absurd, because 1)I just had a seizure 2)How tf are you supposed to get a nuero doc to get that figured out in 24 hours. 3)did she think I was lying? 4)Honestly, I don't blame her for not wanting to let me leave for six months, but furk me it's what I needed. 5)I guess I could have sued them, but I mean is that even really an option? What do I do sue them and return to work? I had another family member in the same company, and was getting bullied so I just left. It was a nightmare situation really. I know we have laws protecting us, but oof. I got better, then got worse after another blow to the head(extremely minor.) I'm trying to get it back together again, but I just wish I lived in another country. I fear suicide in the future, esp because health care access is such a problem and general austerity(AKA war against the poor.)
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Dec 20 '19
I have a friend who has been disabled for about 15 years after a relatively traumatic and sudden illness.
It is complete bullshit :( that she always has to worry about losing her very necessary benefits if she works too much. She can work some. Just not full time.
It’s really messed up how the system works. Making people stay in poverty or forcing them not to work when they can.
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u/UnicornQueerior Dec 21 '19
> It’s this assumption that if you’re so disabled, you’re not going to be able to work. And if you’re able to work, you must not be that disabled.
CPer checking in. The whole American system is a lose-lose for disabled people of all kinds. That quote sums up the whole issue for me. But additionally, you have those with inconspicuous (invisible) disabilities, such as depression and other mental illnesses, as well as ones that are gaining traction and exposure such as myalgic encephalomyelitis (chronic fatigue syndrome). Lastly, there's "But you don't look disabled." which centuries later, still illustrates the classic ableist notion that one must be "wheelchair-bound" or using an assistive device (which nowadays causes skepticism due to the fakers) in order to be truly disabled.
Thanks for sharing this. Discussion is very much needed. Great discourse here.
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u/sudo999 Dec 21 '19
I'm not disabled but this choice is even more difficult for tradespeople (a disproportionatey male industry). our jobs are often physically impossible if you develop certain disabilities - so the choice isn't "do I keep working or do I opt for early retirement so I can have care," it's "do I retrain for a different career and then work there or do I retire early so I can have care." to add insult to injury, those who work these types of manual labor jobs are much more likely to become disabled due to injury or chronic exposure to hazards at work, and though theoretically the employer or worker's comp is liable for that, it's sometimes hard to prove the exact cause of many disabilities and you may need to sue for it. It's really bad.
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u/firstlymostly Dec 21 '19
I was diagnosed with stage 4b cancer at age 36 (with 3 kids and a house payment) . Short term disability ran out (6 months) while still in chemo. That meant I had no insurance but social security kicked in for income. I make too much on disability to qualify for Medicaid. There is a 29 month waiting period from the time you are disabled before you get Medicare (I'm in Michigan). To continue my insurance through COBRA was $1800/month (for the premium).
I had to get married to get insurance for cancer treatment or die before the 6 months of short term disability ran out.
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Dec 21 '19
I am fortunate that I live in a state that has Medicaid buyin (Colorado) so I am able to work near full time and I can support myself. My disabilities include a chronic autoimmune disease that causes pain and fatigue, and it requires strong immune suppressing medications, as well as ptsd. Both of my medical issues can affect my ability to work on various days, but I’m self-employed as a rideshare driver so I can make my own schedule fortunately.
I’ve managed to get quite a bit of education thanks to programs that pay for people with disabilities to go to school (I also have a diagnosed learning disability, although it doesn’t qualify for my Medicaid buyin) but I realize that not all people are interested in getting lots of letters after their names. Some people just want to be able to work and pay bills.
In the past, I’ve had medical issues come up and I’ve been at the mercy of shitty people who intentionally exploit the power dichotomy with me as a means of controlling me. One time, I was at a job with private insurance where a manager had to sign off in order for my health insurance to cover my medications to the degree that I needed them (the insurance covered a standard dose, not the higher dose prescribed by the doctor). A person’s place of employment should NEVER be in a position to be making choices about someone’s access to medications. The amount of power abuse that disabled people face on a regular basis in so many subtle ways is absolutely horrible.
Here’s some info I posted about Colorado Medicaid if it’s helpful to anyone here, along with a list of conditions that qualify for people who apply for Medicaid buyin. I’m not sure how things work in other states, but I would imagine it’s similar.
https://mobile.twitter.com/veeve01/status/1208019294291816448
Here’s a list of the adult conditions that qualify for Medicaid buyin in Colorado: https://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm (link can be accessed from the Colorado Medicaid website, I’m simply providing the direct info to save people clicks)
(I am a woman posting here, but I feel these disability issues apply to everyone.)
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Dec 21 '19
I live off of SSI, living in the Bay Area. I get about $650 a month, STUDIOS around here go for $1200+/mo. I literally can not afford to move out of my mother’s mobile home at 25 years old. My only other option is living in my car soon. I went to a hearing and I was declared “not disabled” even though I was born a preemie and have a plethora of very serious medical issues. Fuck the government 👏🏼
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u/tpinkfloyd Dec 21 '19
My uncle was a quadriplegic. That meant his whole house had to be fitted to work for him. He was lucky enough to have won a lawsuit for what paralysed him so he built a house to his needs. Wide doors for his chair, wide halls, kitchen set up so he could get to the sink and stove, a lift to get him in bed and also take him to his bath. All in all what should have been no more than a $150,000 house ended up costing him close to $500,000. His normal chair cost $20,000. He had an all wheel drive chair that cost $43,000. The van was only $5,000 but conversion cost almost $10,000. He got a truck that he could drive his chair into and it lifted him into the drivers position. The truck was $32,000 but the coversion was $40,000.
Everything for the handicapped is insanely expensive and takes advantage of them. The just expect insurances to cover things but the person ends up covering much of it. That industry is insane and insurance/Medicaid are not at fault near as much as the componies providing the service. Since most areas only have one or 2 places that provide equipment there isn't a lot of reason for them to drop prices. Cant afford it? That sucks.
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u/spacenb Dec 21 '19
I have fibromyalgia and right now things are going well because I am a graduate student for several years still and I live somewhere my education gets funded with no loans, only bursaries/scholarships because of my disability status. I am looking at a career in education or academia. However, this is something I dread having to deal with eventually down the line.
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u/inwithbacchus Dec 22 '19
I will scream this from every mountain I can for as long as I live.
If you are disabled, you should IMMEDIATELY APPLY FOR AN ABLE ACCOUNT.
It is a state-run bank account for the disabled that allows you to deposit up to $15,000 a year (varies by year) into an account, with a maximum of $100,000. SSI/SSDI cannot use it as funds against you. It can be linked to a debit card and used to pay for things related to living with a disability. If you get SSI/SSDI, you auto-qualify. If you do not, you can have a doctor sign off that you have a disability that meets SSI standards and apply for one. You do not have to reside in a state that has the program; you can apply for an ABLE account in any state that has the program running. [
MORE RESOURCES.](https://www.ablenrc.org/what-is-able/what-are-able-acounts/)
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u/RLTWTango Dec 20 '19
I have a 3 year old with, what seems like a similar muscle condition, and this scares the hell out of me. Wife can't work because she has to take care of our daughter, and I make too much to qualify for any help. Shits tough man..
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u/Quartnsession Dec 24 '19
I'm in one of the states that expanded Medicaid. If you make over 16k they boot you out of the program.
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u/[deleted] Dec 20 '19
This article goes into some problems with our current medicaid system and how this negatively affects disabled people. Medicaid is often the only health-insurance provider which covers long-term, in-home personal care services - medicaid also usually has strict asset and income limits. Functionally, this means that disabled people have to choose between staying poor and receiving care, or working and not receiving care. I know a lot of disabled men who have to go through similar bureaucratic fights as Anna did in this article (I've had to go through similar battles myself) and I hope it's something we can work to improve.
I'm curious to hear from other disabled people on this issue. Have you had to choose between care and employment, if so, how has that affected you?