#getting on disability

[insipid-drivel]

SSI & SSDI: What are they, who qualifies, and how to apply?

Prefacing this with "For USAmericans only" because our system is a special kind of fucked up. I'm sorry to say that this may not apply to people that are undocumented, either. The feds suck that way and I really wish life was easier for all of us. This is also gonna be a very long post.

I see a lot of USAmerican tumblr users in dire straights trying to scrape by with art auctions, selling homemade stuff, or straight-up begging (no shame intended; poverty fucking sucks and our system is broken), that really seem to qualify for the same benefits that I have, but underutilize or otherwise don't know they can apply. This post is my attempt to explain the differences between our federal benefits programs, who can qualify, and what you need to do to apply in the gentlest, most hand-holding way I can for those of you feeling daunted or scared.

First off:

1: What's the difference between SSI and SSDI? SSI is short for "Social Security Income", and SSDI is just the same thing but with "Disability" thrown in. SSI pays into benefits for elder care and retired seniors, but what a lot of USAmericans don't realize is that you can apply for SSI at any time if you are disabled and have never had a job because of it. SSI isn't the same as a 401k or a retirement plan through your bank/finance manager. SSI is the federal system through which people who, either through age or disability, cannot work receive federal compensation through tax dollars. I got approved when I was 30 due to the severity of my disabilities when the average American doesn't usually have to worry about SSI until they're nearing retirement age. SSI is also the system that people who have never been able to work due to being disabled can apply for life-long benefits through.

SSDI is specifically for the benefit of people who have worked before, but have become too disabled to keep working for whatever reason. I'm personally, actually, on SSI because I've never been able to work due to my disabilities and have been living with them since very early childhood. I had odd jobs at stables working with horses in my teens, but no paystubs to prove it since it was all in cash. If you've never worked a formal job and are too disabled to work now, you want SSI. If you've been able to work before and can prove it through pay stubs/taxes/employment contracts but are now too disabled to, you want SSDI.

2: How do I know if I qualify? By getting tired of struggling to work because of your disability and giving the process a real look. Are you making less money than if you were working a barely minimum-wage part-time job and still struggling with Being Okay? Then you're probably, to some degree, legally disabled and entitled to help. The threshold to apply for assistance is surprisingly low considering how much I've seen barely-hanging-in-there tumblr users suffering from their respective chronic issues toughing it out with nothing but duct tape, ibuprofen, and etsy shops, and SS(D)I programs really take a lot of care to pay attention to your psychological welfare when you have to work as well as your physical welfare when defining what "disabled" really means.

You can even call the SSA help line, reach an agent, describe your situation, and ask if it sounds like you should pursue an application and how to start at absolutely no cost and with no commitment; these are programs you have a legal right to access and apply for, and calling is completely free - there are no consultation fees, ever. A lot of Social Security agents WANT to help people get on benefits when they need them, but it's actually harder to get approved if you try to do the entire process digitally vs. keeping in contact over the phone with a real human.

While you can apply and get approved with 0 contact necessary up until a certain point with applying for federal benefits, you are much more likely to get denied and have to appeal multiple times, miss documents that you didn't notice you needed to have ready, or not hear about other benefit programs or assistance that you can simultaneously be applying for. Even if you're scared of phones, you want a good agent to advocate for you and advise you when it comes to SSI/SSDI.

For the record, it's NORMAL to be denied at least once, if not several times when you apply, and does not mean that you aren't disabled, or aren't "disabled enough". This is a tactic intentionally used by the SSA to filter out those "truly" in need from those that aren't by using the logic "truly desperate people won't quit applying while people with options will". It's bullshit, classist, ableist, and takes advantage of people with anxiety and social phobias, but that's the way it's been built to be, so you MUST be persistent and keep appealing if you get denied. There are no limits to how many times you can appeal your case when it comes to SS(D)I. Some people can be stuck with being denied and appealing for years, which is why I strongly advise keeping the names and contact information of SSA agents and resources you've been in contact with for help. Once you get people to see you as a person rather than an applicant, you'll start getting a lot more good advice and tips for how to get approved faster and even how to maximize your monthly benefit rates.

If you're struggling to hold down your life in a stable way because of having one or more disabilities that interfere with a regular, "average" person's expected work day (9-5, usually commuting at least a little by car, usually working with other people/customers, spending at least some prolonged times on your feet or sitting at a desk/computer), you may already qualify for more benefits than you're aware of. There are absolutely no legal ramifications for applying for SSI or SSDI and getting turned down, or applying multiple times. It's not a "three strikes and you're out" kind of deal. You will not be arrested or fined for applying or inquiring about what you're entitled to from our federal government. Go to the official Social Security Administration website and poke around! However, my protip is to first read what benefits are available, and then CALL THEIR HELP LINE DIRECTLY to talk to an actual human being. The person who answers the phone can listen to you describe your circumstances precisely and guide you through applying, as well as inform you of any programs you may not know about that you can apply for simultaneously.

My SSA rep was a champion that got me through the process while also dropping hints about how to write and describe my situation in the forms I had to fill out. Because I live with my family, I don't have to pay rent, but my representative loudly asked, "YOU PAY RENT, RIGHT?" as a heavy-handed way of telling me, "I can get you more in your paycheck if you at least say you're paying rent," which got me an additional $300 added to my monthly checks now. I actually do pay that $300 in rent now, because it makes me feel better and helps my family with other expenses, including a brand-new not-even-on-the-market-yet power chair that my mom bought for me recently so I don't have to limp along with a cane anymore.

3: How do I apply?

Go to http://www.ssa.gov/ and research based upon your situation (if you've ever worked before or not). I got so overwhelmed by the online application process that my mom, who does bureaucracy for a living, helped relieve a load of anxiety from me by filling out my paperwork for me as well as she could (she's legally my Power of Attorney and so having her handle my paperwork was totally fine) and then calling their help-line.

Generally, the hardest part about applying is the waiting and resisting becoming discouraged, because Social Security is a slow ass process, and you're lucky if you hear back within several months of an application for an update, much less approval. However, depending on your situation, you may be required to go to an SSA-approved doctor or therapist to review your records and verify that you're still as disabled as you were when you first started your application as a last step before your application process is officially complete. For me, all I had to do was answer a therapist's questions about what my quality of life was like (my answer was "What quality of life?" because I was That Miserable), how my mobility was, how well I functioned around strangers and peers, what chronic pain/problems I dealt with, how long I could stand to be on my feet, and generally gave a rundown of what I could and couldn't handle about an "average" person's daily life and typical expected work load in your stereotypical office or retail setting.

The most important thing about applying is getting the application started as early as possible and making contact with an actual SSA representative! Even if you never follow through with applying (again, you are not penalized if you drop out! You can pick up where you left off or start completely over at any time when you're applying for federal benefits like SSI), after you reach a certain point in being Acknowledged By SSA As An Applicant For Assistance, the clock starts. Your clock starts - and I mean that in a very, very good way.

Once the SSA receives your initial request for SSI or SSDI, they automatically begin calculating any and all back-pay THEY owe YOU when you get approved as long as you're still applying and appealing. For me, my first SSI check came in at almost $6,000, because it took me around 10 months or so after my initial application to get approved, and the absolute basest rate for SSI benefits at that time was about $600/mo. I now make a little under $1k/mo with SSI alone, with my payments increasing automatically with inflation or if a single billionaire bothered to pay any taxes this year. If a major financial problem occurs in my life, like if my mom were to suddenly want more rent, I can report it to the SSA and they'll compensate me for at least some of that increased rent.

SSI/SSDI is not going to make you rich or solve all of your financial issues, and you are not legally allowed to work without special permission and circumstances while receiving benefits, but it can help take some of the pressure off if you literally have no other way of getting financial help. Because they're both federal programs, you're able to receive SSI/SSDI benefits along with many of your state's local benefit programs, like state-funded insurance, welfare, and food stamps to further stretch your budget and help you financially.

Little things that helped me along the way:

I cried a lot. At first it was humiliating to feel my emotions drop out from under me in the middle of a conversation with an SSA rep, but when he heard me beginning to lose it and sob at how hard everything is all the time, he became even more helpful with my case. He was a very sweet man named Dennis from Georgia. The same went with anyone else I had to see or speak to; if I just broke down crying and showed my actual feelings of resentment and humiliation at being so broken down and disabled that I officially needed Federal Government Daddy's money, they'd be a lot more compassionate and helpful. Show your emotions. Be upset. Let the people you speak to know that you feel like crap because, in spite of all your years of trying and trying to Be A Normal Person, things haven't gotten any better and maybe have even gotten worse.

I spoke my truth. I had a lot of suicidal ideology going on when I started applying, and as difficult and scary as it was, admitting that I was feeling like I had no other way out or way to help my family not be burdened by me was through suicide. I said that I would rather be talking to a doctor about assisted suicide than talking to the person I was talking to about asking for basic federal assistance. The therapist I said that to was alarmed and heartbroken that I preferred the thoughts of suicide to the thoughts of pursuing SSI, and was very, very quick to reassure me that I wasn't a failure, and that she was there to see me and help me get what I needed now that I was asking for it. She praised me for telling the truth and being brave enough to keep applying and trying.

I let myself be symptomatic. No masking, no pain meds, nothing; when I had to deal with people assessing me for SSI (which weren't many, but the stakes to me were too high to try to mask even once), I went in exhausted, in pain, stinking from not showering because I was struggling, rushing to and from the bathroom with stress IBS, and very vocally in favor of dying rather than continuing to fuss around with paperwork. When the exhaustion and fatigue made me want to cry, I cried. When someone wanted to touch me - like to take my blood pressure at the doctor's - I allowed myself to jolt away and need to be asked if it was okay before I was touched by anyone. I allowed my Neurotypical Tolerance Level to reach 0, and to be the goddamn mess I really was inside, and still am.

I did not express optimism or hope. I made it clear that I was going through the motions because I "knew I was going to get denied anyway". I knew most people never get approved, and I was honest that I knew it and expected nothing but wasted time while I went through the application process as one final attempt to not be such a hindrance to the people around me.

That following October, I got a snail-mail letter in my mailbox congratulating me for being approved for SSI, and that if I was reading the letter and had not received my first payments, I would after a short time and was asked to call them if I didn't. It took about 10 months total to get through all of it once my mom teamed up with me to help me with the Official Process, and checked my bank account to find not only my very first payment sitting in my checking account, but the past 10 months' worth of payments I would've received if I'd already been on benefits. I used it to decorate my bedroom, which was so spare and empty it looked like nobody lived there, get new clothes I desperately needed (I was 30 and still relying on hand-me-down clothes and underwear from when I was a teenager), started paying my mom rent so I felt less like a leech and more like an investor in our family home, and am now in the process of getting a brand new power wheelchair, because my problems with walking and standing were what got me to start applying, and life has gotten better enough that I can now afford the mobility aids I need.

[identitty-dickruption]

choosing to allocate spoons to hanging out and having a good time at the cost of perfectly completing all your work is not a failing it is in fact an act of survival. “too sick to work = too sick to play” is in fact ableist bullshit that you don’t have to buy into. and the fact that leisure time is treated like a privilege is a fucking travesty

[lifeafterpsychiatry]

The worst thing is that there is so much potential for exploring the horror of psych wards from the angle of medical abuse, ableism, forced treatment/drugging, loss of autonomy, power imbalance, demonization, dehumanization, etc, and YET the horror genre keeps defaulting to "insane asylums and psych wards are scary because there are mentally ill people in there"

[anistarrose]

Disability is not a punishment, but I think the world would be genuinely improved if every person involved in writing or regulating ingredient labels was mysteriously inflicted with at least one food allergy falling under each of the following categories: "natural flavors," "modified food starch," "artificial flavors," "spices," and "color." Down with ingredient labels so vague that they defeat the entire fucking point.

[reasonsforhope]

If you're feeling anxious or depressed about the climate and want to do something to help right now, from your bed, for free...

Start helping with citizen science projects

What's a citizen science project? Basically, it's crowdsourced science. In this case, crowdsourced climate science, that you can help with!

You don't need qualifications or any training besides the slideshow at the start of a project. There are a lot of things that humans can do way better than machines can, even with only minimal training, that are vital to science - especially digitizing records and building searchable databases

Like labeling trees in aerial photos so that scientists have better datasets to use for restoration.

Or counting cells in fossilized plants to track the impacts of climate change.

Or digitizing old atmospheric data to help scientists track the warming effects of El Niño.

Or counting penguins to help scientists better protect them.

Those are all on one of the most prominent citizen science platforms, called Zooniverse, but there are a ton of others, too.

Oh, and btw, you don't have to worry about messing up, because several people see each image. Studies show that if you pool the opinions of however many regular people (different by field), it matches the accuracy rate of a trained scientist in the field.

--

I spent a lot of time doing this when I was really badly injured and housebound, and it was so good for me to be able to HELP and DO SOMETHING, even when I was in too much pain to leave my bed. So if you are chronically ill/disabled/for whatever reason can't participate or volunteer for things in person, I highly highly recommend.

Next time you wish you could do something - anything - to help

Remember that actually, you can. And help with some science.

[stars-and-branches]

Chronic pain pisses me off cause I'm not even incapacitated for like a cool or badass reason instead my body is throwing the world's biggest temper tantrum because it's raining outside

[sidras-tak]

Accessibility takes too goddamn fucking long.

My brother was paralyzed in October 2023. We got him home from the hospital (in Texas, when we live in Iowa) in a clunky old hospital chair. He hated it. He was scared and angry and in pain and his life had just changed forever and he couldn’t do anything for himself in that wheelchair. His first goal (aside from learning how to transfer) was to get a wheelchair. My family was lucky enough to afford one so we thought it would be easy enough. Nope.

We couldn’t buy him a wheelchair. He needed a prescription. For a wheelchair. A doctor had to examine him and declare him in need of a wheelchair. It wasn’t good enough that he had scans and tests showing tumors cutting off his spinal cord. He needed his primary care doctor to examine him during a physical and write a prescription. He was making 2-4 transfers a day, tops. He had no energy to get to a doctor. Home health was in and out every day. He had no time to get to a doctor. He didn’t get a prescription for almost a month. Then it had to go through insurance.

We asked if we could skip insurance and just buy a wheelchair for him. Nope. They wouldn’t sell us one, not even at full sticker price. It needed to be approved by Medicare. We ordered a wheelchair, a nice one, a good shade of green, sporty, small. It would let him move around the house. He would be able to cook, to reach drawers and get stuff from the fridge and brush his teeth and put his contacts in at a sink. We were told it would take awhile, maybe two months. Silently we all hoped he would be around to see two more months.

He went on hospice care on a Saturday in March. On Monday, I was calling his friends to come see him before he died. I got a call on his phone. It was the wheelchair company. They were about to order his wheelchair, she said, but there was an issue with insurance— had he stopped being covered by Medicare? Well, yes. When he started hospice care, he got kicked off Medicare. The very nice woman I talked to told me to call her if he resumed Medicare coverage so she could order his wheelchair. He died less than 12 hours later.

We ordered that chair for him in early December. Medicare didn’t approve the order until March. He was dead before they got around to it. He wanted that fucking wheelchair so badly. The only reason he had any semblance of independence and any quality of life for the last five months of his life was because the wheelchair company lent him an old beater chair, a very used model of the chair he ordered. If I could go back and change one thing about his end-of-life, I would get him his dream wheelchair. He told me again and again he couldn’t wait to get it, so that he could feel like a person again. He made the best of what he had with that old beater chair, but it still makes me mad to this day. He was paralyzed. He needed a chair that afforded him dignity. We had the money for it. And yet, we were left waiting for five months, for a chair that wouldn’t even get ordered until the day he died.

[madtomedgar]

I cannot take "fraud" talk about benefit programs seriously because I know what can get labeled as fraud. Taking a tupperware of leftovers home from a friend's birthday can be argued to be food stamp fraud. Exchanging SNAP for cash is fraud, that makes sense, except in many cases, people will let someone else use their leftover SNAP at the end of the month in exchange for cash they need for shampoo, toilet paper, Tylenol, or other essentials not covered by SNAP. Paying the nurse or attendant for the full shift even though you asked them to leave early because you wanted to go to bed is fraud, even though the alternative is either they get less pay for no fault of their own, or they have to hang around while you sleep. Meanwhile, paying someone for the full shift when the jobsite has to shut down early is policy in many workplaces. Giving your attendant or nurse cash to go pick up your medicine and letting them keep the change is fraud. In some states packing your kid lunch if you are on free lunch is fraud. Because of how strictly benefits programs are defined and regulated, for the recipients, basic human acts and impulses are defined as fraud.

If people want to talk about benefits fraud, they should be talking about third party administrators, nursing homes, and farms. That's where big ticket fraud that is malicious, deliberate, and with the aim of ripping off the government happens. It's the province of large scale service providers and contractors, not people who use benefits or the workers directly assisting them. So unless you're explicitly talking about that, shut the fuck up about "oh I'm sure there *is* fraud."

[who-is-page]

"You can't have [experience] because you don't identify as [label]!!!" how do I explain to people that experiences exist outside of and prior to the formation of specific language to talk about them

"You can't have [experience] because you don't think of it through [framework/explanation/etc]!!!" how do I explain to people that experiences exist outside of and prior to any formal cosmology, hypotheses, or explanation assigned to them

[mochasucculent]

Was looking at refs and since Viktor has two different leg braces I was wondering, do we think he wears them simultaneously?? The refs don't perfectly line up perspective-wise so it's hard to tell but parts of the one he wears during the Hexcore scenes look like they could maybe line up with the brace that he wears over his clothes, but also some parts really don't and look like they'd be super uncomfy. Also HOW does he take these on and off. Experts weigh in

[mythicalcoolkid]

You don't wish your disability was worse or more visible, you wish your disability was taken seriously. Please stop confusing the two, I guarantee you would not get the support you need JUST by being more severe or more visible. Please listen to visibly disabled people when we tell you it isn't better on our side

[lifeafterpsychiatry]

Scars? Not body horror. Limb differences? Not body horror. Facial differences? Not body horror. Feeding tubes, colostomy bags, etc? Not body horror. Movement disorders? Not body horror. Visibly disabled people just existing is not horror.

[inkskinned]

i hate to say it because i'm neurodivergent and a chronic-pain-haver but like... sometimes stuff is going to be hard and that's okay.

it's okay if you don't understand something the first few times it's explained to you. it's okay if you have to google every word in a sentence. it's okay if you need to spend a few hours learning the context behind a complicated situation. it's okay if you need to read something, think about it, and then come back to re-read it.

i get it. giving up is easier, and we are all broken down and also broke as hell. nobody has the time, nobody has the fucking energy. that is how they win, though. that is why you feel this way. it is so much easier, and that is why you must resist the impetus to shut down. fight through the desire you've been taught to "tl;dr".

embrace when a book is confusing for you. accept not all media will be transparent and glittery and in the genre you love. question why you need everything to be lily-white and soft. i get it. i also sometimes choose the escapism, the fantasy-romance. there's no shame in that. but every day i still try to make myself think about something, to actually process and challenge myself. it is hard, often, because of my neurodivergence. but i fight that urge, because i think it's fucking important.

especially right now. the more they convince you not to think, the easier it will be to feed you misinformation. the more we accept a message without criticism, the more power they will have over that message. the more you choose convenience, the more they will make propaganda convenient to you.

[balthazarslostlibrary]

Dan Piraro, Bizarro Comics 2006

[vizthedatum]

An apparently unpopular opinion: disabled people can have and do their hobbies. They deserve to have fun. They deserve to live their lives.

Their inability to do some things (like work, for example) does not mean they should be judged for… idk hanging out with their friends or to going outside. After all, having interests outside of work is often essential to our mental and physical health OUTSIDE of our disability.

And also *you might want to sit down for this* disabled people know what’s disabling for them (unless they people-please or push through due to necessity or survival of some sort). Disabilities don’t have to be visible or persistent to be disabling.

So yeah - my declaration: if an activity you want to do feels good and you’re able to do it, then do it. REGARDLESS OF YOUR DISABILITY WITH OTHER THINGS.

[crimeronan]

CDC finally fuckin' recommended the new COVID boosters for everyone in the US. letting my american followers who don't check the news know because i've been turned away for wanting to get an extra booster & now won't be anymore & it's Lovely. most americans are not going to get these and are going to grumble about them, which sucks as far as spread goes - but DOES mean u can schedule with ur local pharmacy sooner rather than later. please do so. ur immunocompromised friends and ur own body will thank u.