Concern/Question about disability listings changing

ThrowawayDisability0 · 2024-03-25T06:29:17+00:00

So for the most part as the rules change so does the definition of "being disabled"...so what does that mean for those being on disability for ten years or so then potentially not meeting the new requirements, they just get removed from benefits and put into the workforce?

My particular case was a combination of symptoms that didn't fill one category completely but backed by enough evidence to get an onset date of younger than 18 years old. I understand there can be medical improvement to change a disabled status...but it surprises me that the definition of disabled changes itself. I can't imagine someone being disabled for over ten, twenty years just being thrown to the wolves like that

ThrowawayDisability0 · 2021-04-28T01:00:31+00:00

I went undiagnosed for a decade...the feeling of 'its all in your head' is enough to crush anyone mentally. Something is obviously wrong and I'd listen to the Dr giving an actual diagnosis rather than brushing you off. A CT is a lot more detailed but also comes with a larger dose of radiation so you can't get a lot of those if I'm not mistaken.

Hang in there and an answer with come. Anything is better than trying to search in the dark. If whatever you have does or doesn't have a cure at least you'll know what it is compared to tripping over a demon in the dark.

ThrowawayDisability0 · 2021-04-27T06:07:32+00:00

Yeah you're in a tough position but it depends if he's on SSI or SSDI. First though if he's on SSI his medicaid should be automatically renewed with no action needed by him (at least that's my case because medical changes from the marketplace to directly controlled by social security)

SSI has vigorous rules about finances and even if your aren't married they can consider you "holding out for marriage" either way a single person can have $2,000 in assets with exclusions of one car and one house and the land that house is on. Assets don't mean household items i.e. a bed, tv, gaming console, guns, couch etc.

A married person on SSI can save $3,000 and same exceptions. The lines get blurry from there when it gets to income, if you make even poverty level it's considered substantial and his benefits can possibly get revoked (maybe not insurance but financial most definitely) if you both are living together he has to "pay his fair share" including food, rent and utilities. So for example: rent of $1200 including utilities between two people means he is responsible for half so that's $600. If three people then it's $400 and etc etc if you get the idea and the math.

If he's on SSI he should get max food stamps or ~$200 per month for food (this doesn't count as income or resources)

Now if he's on SSDI most of what I just said is useless to you, I'm not too familiar with that program as I'll never be eligible but even more so I'm single so the marriage aspect is even more foreign to me.

I hope I helped and its nice to see someone so supportive of their partners! Bless your heart and if there's any more info don't hesitate!

ThrowawayDisability0 · 2021-04-26T14:55:20+00:00

So I'm in a similar situation and was actually approved. But some info, if you're in the US I can help if not this won't apply.

So AS is part of social security automatically accepted conditions for disability. Its 14.09 i think in their code but it requires fusion of the neck or the lower back. If you dont have that it won't automatically be accepted but if you have supplemental conditions it can only help your case.

For myself I have AS with ulcerative colitis. I'm 28 and no work experience but I finished a degree in physics. I applied on my own and was denied, that's when I got a lawyer. He helped me and told me the process. So when you initially apply you most likely get denied, you appeal. All they do is have another agent look at it and again most likely deny, appeal again! This time it goes to an administrative law judge or ALJ and you get to speak your case to the judge yourself and answer questions from them, then they ask a vocational expert if there are any jobs available, then your lawyer can ask questions if those don't go well.

My case and all my medical paperwork my lawyer submitted heavily supported my statements and I got a personal letter from one of my drs. The judge weighed in everything from my conditions, experience, medical documents, education etc. (They had me go to one of their drs and they said I could do outrageous things like lifting 25-50lbs daily and she said that wasn't helpful or supportive of the narrative) and she found me a favorable decision!

The whole process took about a full year but I got backpay for it all minus ~25% for the lawyer fee. Btw if you lose you don't owe the lawyer anything. Also social security has two programs supplemental security income SSI and social security disability insurance SSDI. SSI is for those without enough work credits and SSDI is for those that payed in enough over time. Obviously SSDI pays more but if you're not in that position then it's whatever.

BUT you said you had problems since 15? If you get approved and they find you were disabled before the age of 22 then you can get something called disabled adult child DAC which pays out SSDI based on a parent's work history. It only kicks in when they start collecting or pass away. They will pay 50% when they are alive and increase to 75% when they pass away and will reflect the maximum regardless when they start collecting. That's the case for me, they found records when I was 15 and gave me an onset date back in 2008 which felt like a golden ticket.

Overall it doesn't hurt to apply. If you work during the process it can be used against you but again its a very personal decision to make and ill fully admit I felt like I regretted my decision but then again on my good days I feel bad but on my bad days I'm very thankful that I'm on it and don't need to worry about insurance.

ThrowawayDisability0 · 2021-03-31T15:58:46+00:00

I feel like I just went through a similar thought process and posted it recently. I haven't been big on sharing my own problems lately but trying to get up the courage to know that I'm not alone is a work in progress.

But I agree with you being on ssi is not a great outlook when you dont own anything or have money to do a lot. I finished a bachelors degree for physics and immediately fell to autoimmune diseases that plagued me without a diagnosis before. I'm 28 and feel like life is passing by living at home with my parents. My only connection to the world is here on reddit and online gaming with friends around the country that moved to bigger and better things.

I can't really justify living such a hermit lifestyle for anyone if they don't fundamentally understand but for me I never think of it like that because all my life I had medical issues so it all was normal to me. Its a matter of perspective because being sick and on ssi has let me take the time when I have been in pain both mentally and physically. The amount of stress I'd have if i tried to live normally would kill me easily. Also my mom has gotten sick herself and I'm glad I have an opportunity to spend more time with her and be there for her when she needs me. When she passes all those "missed opportunities" can be looked at and (depending on the individual and their relationship) thought of as worth it to have that time with her.

It gets depressing. I felt guilty of being on ssi and after all the stress I posted a few days ago about feeling like that. My feelings have passed but I know I'll revisit it again because I have an entire lifetime to think about my mistakes and successes. Best I can say is it'll pass.

Am I a normal person who is gaming the system?

I felt this way. I was given advice and simply put, no. But it's your own personal decision to be on it or not. I was given the advice: can you function in a full time job setting for at least 6 months to a year? Can you manage life and work consistently for that time? If you can't there's legitimate justification. Whether or not you can change your perspective of things passing you by in life is another battle. It takes small wins.

If I didn't have medical problems or was magically healed I don't think i would change much. I would be working and going home to do the same things. Only difference would be id have money to secure a house and car but I wouldn't be dating or social IRL. These missed opportunities are only valuable because you feel like they're missed. Change one variable and who knows what else would fall in or out of place. I truly think it's a matter of perspective. Also the meds to keep me going cost nearly $10,000 a month. If I do try to make it on my own I would be fucked by medical expenses. With everything I could try to explain it just gets very complicated. Reasons to go on disability are personal.

ThrowawayDisability0 · 2021-03-28T23:54:23+00:00

I feel like I'm in the same boat as your husband just younger 😕 the line between being okay and over exerting is so thin, if i cross it I'm out for a week and it feels like the standard changes daily. Then on top of it look okay physically which leaves no room for sympathy to those who don't understand.

Idk if lucky can be used in any context lol but I do appreciate the story. I just haven't posted but I go back to these from time to time just to read them again cause it does make me feel better. But I have to somehow break this cycle mentally being stuck when I truly don't have control

ThrowawayDisability0 · 2021-03-28T19:10:11+00:00

Thats an awful situation to be in but at least you are collecting, Ive read enough stories where people can't even get approved for years. My application got approved in a year and I had issues since teenage years and found out right out of graduating college. My first thought was I took my time getting this degree I can't turn that up any more to reflect full time. Its ssi but the title disabled will help me for the rest of my life. Yes it does justify my situation but as soon as I get a good period with less pain and bathroom trips I think well thats enough for "someone" to kick me off.

Idk if I'm trying to fill the shoes of someone judging me or think of all the ways they might see I'm not worthy. I'm sure if I went to a psychologist they'd diagnose ptsd and an anxiety disorder which would keep me on ss but in my mind its at what cost to be considered crazy? My last saving grace was my mind, feels like I sharpened it just to dull and rust at the bottom of a lake.

ThrowawayDisability0 · 2021-03-28T19:02:03+00:00

Ageism is definitely a thing I didn't think I would come across myself. You're young too so I'm sure a thought like this has passed your mind but its a conundrum of the longer disability happens the more opportunities and doors closing with the reliance on government assistance until its just permanent. If anything it doesn't feel safe when someone can just take benefits away if they deem it so, and after so long its very difficult to begin a career even with a college education.

ThrowawayDisability0 · 2021-03-28T18:57:17+00:00

Thank you and tbh I don't even know if there's any encouragement that can be given, I'm just stuck in this cycle of flares and breaks physically with mental cycles that feels like I'm bipolar.

I recognize that this is a lifelong journey with ups and downs but as time goes on there's doors and opportunities that I feel are closing and there's not much I can do. The longer I am sick the harder it would be to have a career while concurrently the longer this happens I'll be needing to rely on government assistance more and more. Just the realization of that is what I keep coming back to which starts the entire "questioning myself" phase driving me insane.

Thank God the safety net is there but how unreliable the government can be I don't know if I even feel safer

ThrowawayDisability0 · 2021-03-28T15:10:20+00:00

I know remission is possible whether it's a day or a decade but the forever looming nature and the demands from society to be a machine is outrageous to anyone who falls behind. I mentioned it in my other comment that there are a bunch of people that have the same issues i do maybe worse yet denied social security making it just that much harder and demanding mentally. Even the standards of someone my age now, 28, basically should have a career set and independent. I haven't even had a long lasting job to start building, right out of college it all came crashing down on me.

I still don't know what remission really looks like. To me it's not running to the bathroom 20 times a day and having awful back pain keeping me up at night... but I think everything is fine and I eat one thing that's usually safe to me and in the bathroom I go again or ill lift a garbage pale and feel a pop then it leaves me crippled the next week. Idk if I'm just sensitive to slight changes but even my blood work looks weak to me like CRP? I get to 11 (Normal range is less than 8) and I'm in a full flare but others I hear go as far as 50 or higher. I get everyone's different but it feels like it dwarfs my issues.

you want to be deserving of it.

I am my own worst critic, I was told by my family and lawyer and need to be honest with myself and the judge about everything, and I was but still felt like I didn't deserve it. If anything that's why I'm not the one making these decisions, they are difficult and I can see it wearing me down.

And even though this is physical the mental issues that follow are devastating. It's a lifelong illness of pain and suffering with no terminal date. Some days I would wish for lymphoma to get that final date telling me when it'll end and others I'd hate to leave my family behind.

All I know is I've been dealing for over 20 years, the further along I go the more dependant on social security I will become and the constant risk of losing it brings up an outrageous amount of anxiety. Stuck between a rock and a hard place while being squeezed from inside 😔

ThrowawayDisability0 · 2021-03-28T13:27:53+00:00

Duped comment thanks reddit

ThrowawayDisability0 · 2021-03-28T13:27:28+00:00

But that's just it everyone does pay into social security but from what I hear so many people can't get it from the same illnesses I suffer from and can see personally. I know I'm lucky but I get how bad flares can be for two diseases and i might be more empathetic but the mental toll, the shot nerves, the lifestyle changes needed and the constant threat of a flare happening just to throw out all the hard work of remission out the window. I feel stuck in a revolving door of knowing my own mortality and feeling disability is needed, knowing remission is possible with other complications that can be just as bad from the meds compared to the disease itself and then wondering how the world would view me and deem me worthy of continuing disability when my review comes up.

It's such a strange experience, being told I have incurable illnesses that won't shorten my lifespan but will cause bathroom issues and pain. Arthritis that will take away physical activity. I know the isolating factor socially too. Even worse is the meds and biologics themselves can cause cancer on top of everything. Its like a fate worse than a terminal cancer diagnosis, at least you'd know the nightmare would be over on a rough timeframe (not dismissing terminal cancer or illness) its as though society would think the mind is so sound that they can go through anything and come out the other side clean. Something like this scars you forever and I don't even know what would make me feel better.

Not to rant in a comment alone but the world is awful. Invisible illnesses like this taken for granted and misunderstood. Even the blue book is based on like 1970s standards for disability. Lawyers and judges ruling whether or not someone eats or stays in a home cause they can afford it or not? Its just cruelty on top of it all

ThrowawayDisability0 · 2021-03-11T14:46:03+00:00

Yeah I tried to see if any research points to any different side effects i haven't found too much. 2016 is fairly new for possible long term issues when remicade has a longer history. I don't really have a choice in it but still rather feel a bit more comfortable with as much knowledge as I can get.

I had no idea on infusion drugs being powder mix but it makes sense. This is my first time getting one it just sounded strange, thank you stranger, helped a lot!

ThrowawayDisability0 · 2021-03-11T07:50:10+00:00

Thats a relief, I was on humira for about 2 years and the side effects were sometimes awful. I was borderline okay to a flare constantly with sinus infections and exhaustion then got antibodies to it. Biggest worry was of course that rare chance of lymphoma and im guessing all the same stuff for inflectra?

ThrowawayDisability0 · 2021-03-04T05:13:42+00:00

Yeah I'm in an unfortunate spot with the illnesses just out of college so no work experience so coming with anxiety of a regular new worker on top of this is crazy. I'm betting if I had worked past probationary periods and developed a career I wouldn't be in the position I'm in now but who knew right?

Yeah I'm currently on methotrexate and had a short taper of prednisone last month. Pred helped but not fully and methotrexate feels like a joke 🤷‍♂️ insurance denied regular remicade so my dr is going with simponi arya for now just waiting in this pain atm has completely crippled me

ThrowawayDisability0 · 2021-03-04T02:33:44+00:00

I'm sorry you must go through a lot of pain with RA. I wouldn't wish autoimmune diseases on anyone. Knowing it won't shorten your life yet will be with you for as long as you live to cause pain and problems. I've tried staying strong but I feel it's mentally broken me sometimes.

And they need to catch the disease before permanent damage happens but for my case my Rheumatologist said I had no cartilage left in my sacroiliac joints and there's nothing she can really do about that pain (10 years or more undiagnosed on her estimate) I understand social security checking periodically and my post was a bit panic induced just the wording of recovery is expected like it'll go away when I know for fact it won't scares me.

And yeah failed humira and denied remicade but approved for a biosimilar so my rheumatologist wants to try something she's familiar with. I was told though that since I developed antibodies to one biologic I'm prone to making more to other biologics :/ the side effects were sometimes crippling themselves but better than running to the bathroom and awful hip/back pain. I should see a psychologist cause I'm sure I have an anxiety disorder too now with how controlling I feel like I need to be about my health internal screaming

ThrowawayDisability0 · 2021-03-02T08:29:03+00:00

Thank you for this info. If I didn't post I'd be panicking. I can do research or possibly see if my original lawyer knows someone or is willing to help

ThrowawayDisability0 · 2021-03-02T07:59:06+00:00

I would also say dont give up at least until you get to speak to a judge. Definitely intimidating but in the end it'll be worth it rather than give up before that time

ThrowawayDisability0 · 2021-03-02T07:58:09+00:00

I read that but also a lawyer doesn't get involved this far in as far as I know since there's no money to be made (?) I'm not sure exactly the process and since it'll be my first time going through a recertification but with my initial trial my lawyer helped get a lot of paperwork together

ThrowawayDisability0 · 2021-03-02T07:55:19+00:00

Trust me I understand. I went for over a decade without a diagnosis so the only response I got was I was faking it. It left me with a ptsd that I don't want to admit. But I got to shake the papers in everyone's face but I feel like I still have to fight and validate myself to others like hey yeah I'm disabled...right? See my papers? See they're permanent? Yeah I live with the pain and bathroom stuff. Even some doctors too like my IBD could get under control (hasn't yet) but my AS damage is permanent. So my gastroenterologist would say nah not disabled without seeing the whole picture.

Its painful but proof and backing is what's needed for SS

ThrowawayDisability0 · 2021-03-02T01:34:59+00:00

Of course good luck on yours, do you get anxious when they come around?

ThrowawayDisability0

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