Tim’s hearing is today. He and his lawyer are meeting with a hearings officer to appeal the disability denial. The session will take 30 to 60 minutes. I’ll be outside in case the attorney feels something needs clarification, but in all likelihood I’ll stay outside the whole time.
Let’s all think good thoughts. You can keep thinking good thoughts even after the hearing takes place (11 a.m. Pacific) because the actual decision won’t be rendered for a few weeks. Because the process just isn’t slow enough, apparently.
Pessimist or realist?
Despite my plea for good thoughts, I’m going in with the assumption that he’ll be denied again. The attorney said that most appeals aren’t won until you get in front of an administrative law judge. So once we get the official denial — in a few weeks — we can apply for that step. Which can take around 18 months. Because bureaucracy.
It’s a lot easier for me to just go in with the knowledge that this isn’t the final step. A lot less stress overall if I’m not on tenterhooks during the hearing and especially for weeks after. I’m sure I’ll feel a quick surge of hope when the decision does eventually arrive in the mail. But overall I know what to expect.
For now, I’m reminding myself that the only stress of this situation is getting us to the appointments. And the stress it’s causing Tim, of course. That, unfortunately, is a much different case.
Having to go on disability is dehumanizing enough. Then being blamed for maintaining decent health — because you’re no longer pushing past every physical limit to keep a job (and failing) — is just a million times worse. Even knowing a denial is coming won’t stop him from being devastated by the official letter.
The fun of SSD
I know there are people out there convinced that there are hordes of fraudsters out to game the system. Perhaps they don’t know the process.
Technically, the first steps are to be in denial about your limitations and push yourself beyond all reasonable limits, destroying your already fragile health. Then to sit around feeling worthless and hopeless while you work up the wherewithal to actually start the process.
But hey, let’s assume you’re a big ole faker and don’t have to go through that. Well, here’s how you go about claiming your “free” money:
- Find a doctor willing to state that your condition keeps you from working for at least a year
- Fill out an application with painstaking-yet-repetitive questions about the exact nature of your restrictions
- Wait 1-2 months to get an appointment to review the application with a Social Security officer
- Get a denial 2-3 months after that
- File an appeal
- Get a denial 2-4 months after that
- Request for a hearing in front of a judge
- Wait 12-18 months (or more) for the hearing
- If you have a lawyer, probably get approved. If not, you’re looking at years of more appeals.
Throughout the process, you’ll be living on almost nothing. You can get food stamps and maybe Medicaid. The state of Washington gave me $330 a month (which was repaid once my case was approved). I appreciated it, but in Seattle that’s not even enough for the rent on a room in a house.
The payoff
But hey, it’s all worth it when you get those benefits right? I mean you’re cashing those big checks for… around $850. Think I’m underestimating? Nadine started working at a young age and didn’t go on disability until her 50s, yet she still only gets about $1,000 after Medicare premiums.
So yeah, probably around $850. The good news: You make so little that your Medicare premiums are covered, and you probably qualify for food stamps. So you’ll keep every cent of your Social Security check! Which is good since the rent for even a room in a house is probably $400.*
So you have $450 left over for utilities, bus pass (or gas and car insurance), doctor co-pays and medication. Plus the inevitable unexpected expenses life doles out.
Yep, you’re livin’ the high life. All you have to do is watch every penny and deal with the stigma of being on disability.
Catch-22 logic
So let’s make the crazy assumption that you’re not on SSD for S&Gs. That almost anyone would rather earn a paycheck than have everyone (including themselves) question their worth.
Let’s assume, then, that you’re actually sick and that your benefits allow you the breathing room to take care of your health.
Well, that could bite you in the ass.
Not working will usually greatly improve a sick person’s health. There’s time to rest, recuperate and figure out how to work within health limitations — all while keeping a roof over your head.
Which would be great… if your renewed health (which comes from not working) weren’t sometimes construed as proof that you’re well enough to work.
Stressed-based illness
Tim was initially approved for severe eczema. People who read the blog way back in the day may remember that Tim sometimes couldn’t wear clothing. Most jobs require clothing.
Also, employers prefer you don’t come in with staph/MRSA infections. We stopped counting after the 20th MRSA boil, which was at some point in our second year together.
So Tim applied for (and eventually got) Social Security Disability.
Since then, most stress has been lifted from Tim’s life. Until you stop working, you fail to appreciate how much it takes just to be somewhere on time and then have to be there for a set number of hours. Let’s not get started on deadlines and office politics.
But less stress is only part of the equation.
Since Tim is home, he can take showers as needed. This helps him ameliorate pain in his joints and muscles and helps to numb his skin. He can also lie down if needed. Plus, he doesn’t have to sit or stand in one place for too long. He’s rarely asked to bend or carry things.
He’s also able to keep warm. In Arizona, offices and businesses keep the A/C cranked up. Tim keeps the house between 76-78 and wears fleece pants. He’s having a bad spell right now, so it’s currently 79. It’s a compromise between 80 (which had me sweating profusely, even in the bare essentials) and 78 (which caused him to put on a hoodie). I’m trying to stay under the ceiling fan and drink lots of water.
All of these conditions mean he’s better — but only because he’s not working. But all Social Security sees is that he hasn’t needed to see dermatologists for his eczema and that he’s not completely immobilized by fibromyalgia pain.
(Sort of) new wrinkle
But hey, there is one thing that’s gotten worse: Tim’s depression. He’s always struggled with it, but it’s gotten exponentially worse since he stopped working.
And now that his benefits are in jeopardy — including health care which is the real financial issue — he feels even more rotten and worthless.
He wonders, sometimes out loud, if we wouldn’t all be better off without him. It’s why I refused to even look into life insurance for him. The request came a few minutes after the observation that my life would be easier if he weren’t around.**
The Cymbalta has helped, both with the depression and the pain.*** He’s back in therapy. By the time we get a hearing in front of a judge, I expect his therapist will have a pretty convincing case for major depressive disorder.
Or maybe the Social Security people will decide that the depression will be fixed by him getting a job. I wouldn’t put anything past them.
Did you know the disability process was so long and involved? Have you ever wondered about disability fraud? Anyone want to beat up the Social Security Administration for me?
*Of course, you can always apply for subsidized housing, but you’ll probably wait well over a year. And some of those places aren’t convenient if you rely on public transit.
**It takes about two years for the suicide clause to be waived, but who knows how long this case will drag on? And Tim can be remarkably patient when it comes to sinister, long-term plans.
***He estimates he’s now at a 3.5 out of 10 on the pain scale most days. But that’s from someone who’s used to being in constant pain. I think that probably translates to 6-7 for the rest of us — at least based on my misery when my lower back flares up even moderately. In his place, I’d be drowning in pity-party confetti. Except that I’d be too sore to throw the stuff.
Thinking good thoughts. Good luck.
Thanks!
Yeah, I don’t see why anyone would go through such a long and drawn-out process just to get a small monthly SSD check. I’m sure there are fraudsters out there, but the percentage must be small. I hope he gets it!
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Yep, it’s a pretty weird concept. Almost every person on SSD I’ve talked to would far rather work. Unfortunately, our society has a very strong tie between the ability to earn a paycheck and the value of a person. It’s probably unhealthy, but that’s a rant/raving for another day. There will always be a small percentage of people who cheat (even when it’s a baffling amount of energy expended to do so), but it’s marginal.
He will get it eventually, probably just not this time around. But I’d love to be pleasantly surprised!
It takes courage to get through all that pain and still fight for a social program that is suppose to provide for those in need. Good luck and keep us posted. Tell Tim to start a blog, it will help his depression.
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Unfortunately, his ADD makes it tough to keep a thought too long. (Sometimes he’s forgotten it by the time he whips out the iPod to look something up.) Also, typing makes his hands cramp up pretty badly. And depression can make you VERY sensitive to criticism. But hey never say never, right?
Wish there was something that could be done, besides sending good thoughts (which I am!)
Best of luck to Tim. I have to believe, that although he might have to jump through a lot of ridiculous hoops, the government will eventually realize that he is entitled to these benefits – and then you two will have a little less money stress.
PS – I picked up a penny the other day and thought of you 🙂
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Awww, thanks for thinking of me! I have to be a lot more careful about pennies down here. You never realize how thin pants pocket material is until you pick up a penny on a hot day. Youch.
And yes, I have to believe eventually we’ll get through to them. I remind myself that the attorney wouldn’t have taken the case if he thought it was unwinnable.
I’ll keep my fingers crossed for him. I found the Social Security process to be absolutely miserable, and it did lead to a period where my depression symptoms were spiraling badly. I hope things go a little easier for Tim (our local office has a reputation for being one of the nastier ones to deal with), and that therapy helps him realize that this isn’t the thing that defines his life.
As for the idea of people faking it to get on Social Security… Quite frankly, I find that to be similar to voter fraud- the rare cases that have ever been found are ones that the process doesn’t catch, and are usually perpetrated by the people screaming the loudest about how their tax dollars are being spent. Beyond that, the restrictions that come with certain forms of Social Security are dehumanizing and emotionally devastating. If you look at the restrictions on what you can and can’t do if you need Adult Disabled Child benefits (you can’t get married, be in a partnership of any kind, or even co-own a property, etc.), you’re actually looking at clauses that deny people human rights (literally, things on the list appear on the UN’s charter). I don’t see a lot of people lining up to sacrifice their human rights due to a general lack of work ethic.
Eesh, I didn’t realize that about the Adult Disabled Child benefits. And yes, I think it’s mainly just that the few exceptions are so inciting that it confirms (for people who want to see it) that there’s rampant (or even moderate) abuse.
It really ticks me off that it is like this. I’ve experienced my grandmother go through this and she tried for SEVERAL years to get on SSI because she could no longer stand for long periods of time because she had a terrible cough and would get out of breath. She worked in cotton plants for goodness sakes, which made it no better. She eventually got approved for it, but a few years later she passed away from what we now know was sarcoidosis.
My great aunt was put out of work because she kept breaking out on her face….it was so bad that her face became distorted. Turns out, polyps were developing on her skin and she went through years of hell trying to get SSI and eventually once she was approved, she died. Turns out the polyps were developing in her throat and closed off her airway.
More recently, my maternal aunt is a diabetic and suffers from terrible neuropathy. Her hands and feet hurt, which pretty much counted her out from any type of work. She even attempted going to school to become a pharmacy tech and graduated with her certificate while in pain. She didn’t want to not work but she was given the hassle as well. She eventually received SSI benefits and reduced back pay.
I’m going to stop there because as you can see and already know, it is maddening how much you have to go through to get your own money that you have paid into SSI when you really need it. Reform, much?
Oh wow, those may be some of the worst stories of denials I’ve heard other than people with brain tumors. I’m so sorry for your losses. I know they were years ago but it doesn’t much take the sting out of it.
Luckily, we have my paycheck so things aren’t quite so dire as when a lot of people have to apply for disability. So that’s something at least.
I’ll keep thinking good thoughts for Tim and you. I know how long and awful the process is…it took my wife 2.5 years to get her SSDI for rheumatoid arthritis and fibromyalgia. She was in the waiting period for a hearing when she finally received an approval from a committee meant to fast-track cases that have dragged on too long. We were very fortunate that a) our state offers some short-term disability insurance (NJ) and b) she had private long-term disability insurance through her work that kicked in right after the state insurance. I don’t know how most people survive the whole approval process with no income only to receive a small benefit in the end, and at the same time their healthcare expenses are rising. As it is, almost 30% of our budget has been going to medical insurance and medical costs.
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People don’t understand how much of even a healthy income can be taken up by medical costs. Especially if something you need just isn’t covered. So sorry you guys had to wait so long, especially with the combination of conditions! I guess people just think, “Well, I have pain sometimes. I take some medicine and power through it!” or something else myopic as hell.
Good luck with the hearing. It’s tough having to deal with the bureaucracy and the long waits that are generally involved. Glad to hear that you are confident that Tim will eventually be approved…though sorry to hear that the process is so painfully slow!
Yeah, I’d be more worried but I figure the lawyer wouldn’t have taken the case if he didn’t believe the efforts would eventually pay off. Because if we don’t get paid, he doesn’t get paid.
When I was at the new hire orientation for my current employer, I recall hearing from the HR person that it was likely we would have a long term disability at some point, so we should consider the extended LTD insurance. That was a long time ago, but I can really relate to that statement now. I tried getting LTD insurance several years ago from two different companies and was declined both times. I do regret not signing up when there were no hurdles in place , and I’ve given up on pursuing it. At least I have some minimal LTD insurance provided by my employer, as well as generous short term disability insurance.
Sadly, we just don’t take care of each other very well in this country. We have this scarcity mentality that encourages us to hoard resources, and we hear over and over that everyone is trying to cheat each other to get ahead. It’s really not true. Yes, there are some “bad apples” but not nearly enough to rationalize the hatred and cruelty.
Excellent point. Scarcity is a killer when it comes to our ability and desire to help people. It makes us suspicious of everyone who isn’t close to us. Meanwhile, the vast, vast majority of people wouldn’t be asking if they hadn’t tried EVERYTHING else.
Sorry to hear you missed the LTD opportunity. I looked into it, but like you I found it too expensive to be a real option.
Sending good thoughts ! I was fortunate.. or not.. as my SSD case was approved on the first application, no denials. It was a requirement to file and one appeal, from my job, to save them money on long term medical disability payments.. I would much rather be healthy and working, and the money is very little. I am frugal and get by. I hope things work out well for your family
I’ve yet to meet someone on disability who wouldn’t rather be able to work. I’m so sorry you have to live on so little — and that your job got out of paying you more money. I’m sure it’d help. I *am* glad that you got your benefits right away, though. What people don’t realize is that then you have to wait for Medicare to kick in. The whole system is just ridiculous!
Wow I was so ignorant of the process. It’s really incredible how long you will have to wait to get benefits. I’m so sorry you guys have to go through this.
I think stress takes more of a toll on people than we care to recognize. In some cases it can be debilitating, but in others it’s just a secret/hidden suffering. There’s definitely a stigma around it.
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It’s hard to recognize something that you deal with, day in and day out. It’s why it takes a bit for people to settle into vacation and, much harder, back out of it. And it’s why most people applying for disability crash so hard when they finally apply. They don’t realize how hard they’ve been pushing themselves until they finally stopped. I slept about 14 hours a day for the first month… the first time I stopped working. Then I had to try again due to circumstances not letting me apply for SSD.
People who have not experienced going on the “Dole” have no idea. Think it is free money. I had to go on public assistance many years ago for prenatal care and transition back to work. I was a royal pain in the ass. I am not prone to depression, however, this got me real close. I suppose these people who oppose any sort of disability or welfare assistance make exceptions for people they know who “aren’t like that”?
If the reason for disability is poor health, how about supporting people in getting good care. If the reason is poor skills, how about some job training. If the reason is addiction, how about life skills and detox, etc. If the problem is not fixable, how about a guaranteed income without stigma?
The money spent of disability is not the cause of our fiscal issues.
Ha, that’s true! My relatives who vehemently oppose government programs never urged me not to go on SSD. They knew I’d tried for years to work, so I guess I wasn’t “one of those people.” I’m glad you got the prenatal care you needed — and the cushion while you got back to working.
I’m just shaking my head at the craziness of the process! I’m also hoping for the best outcome, but understand why you are expecting a denial. Tell Tim to hang in there.
Yeah, based on the woman’s body language Tim is definitely not optimistic. I wasn’t optimistic to begin with. So we’ll just wait for the denial, which should come in 3-4 weeks. The lawyer said the next step is a hearing, which will take 10-15 months to get. In the meantime, I just remind myself that we still have his Medicare. And in the meantime we’re saving a decent amount by putting his checks away.
Wow. Sounds like a crazy process. Best of luck. Hopefully it’ll be over soon.
It is indeed crazy. At least we’re more or less used to it. It doesn’t make it less psychologically damaging, but at least we get to keep his Medicare in the interim. That’s what would kill us financially.
I am seeing something – not quite the same, but related – unfold for someone I’m close to, and it’s SO frustrating. There’a a cruelty in the tenacious inertia of it all. Months and months of waiting . . . so that a new set of months and months of waiting can begin. I’m very sorry that your husband’s depression is intensifying. He is very blessed to have you. I hope you both find peace apart from resolution – because if you’re right, resolution is still a long way off.
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I think his therapy is helping. She’s trying to help him concentrate on quelling negative thoughts. Having been bullied as a kid for his skin for so long, he’s got years worth of internalized negativity to cope with. Luckily, we’ve got plenty of time for her to do her thing.
And yes, there’s a cruelty in both the inertia and the implied disbelief. As though you wouldn’t happily be able to work and earn a paycheck rather than waiting years to attain/keep less than $1,000 a month.
I didn’t know he had a history of being bullied. Bullying causes far too much grief. And victims are shamed – and so rarely speak up. If he’s seeing a therapist and has you for his wife, I can’t help but think that he at least IS speaking – something that opens the door to a lot of healing.
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Unfortunately, he was bullied extensively. Well, ridiculed more than physically intimidated. He beat up anyone who tried the physical route. But words may be worse for most kids, I think. The eczema was so bad when he was a kid that one nurse likened him to a third-degree burn victim. There were times when it was clearer (usually when he was on prednisone), but he was pretty broken out most of his adolescence. And it’s even worse in places like Tacoma, where the sore spots on skin and bad teeth generally mean you’re a meth addict. So he always worried people thought he was a meth-head, too.
My disability was determined to be 100% and determined in only four months. Everyone says it is the shortest time they have ever heard. My friend said it was my ability to articulate answers to their questions that got my disability in four months and no waiting.
I did not realize how my self-esteem (2 BAs and MA) was suffering until I won the County’s Senior Spelling Bee. People all around town are still congratulating me six weeks later. I was suffering and did not realize or at least could not articulate the feeling of worthlessness.
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Nadine’s disability was also approved on the 1st try. Her doctor knew all the right things to say, I guess. Articulation is all well and good, but it also depends on the condition in question. Atrial fibrillation in addition to already having replaced knees and breathing problems and being in her 50s was a lot more convincing that a 30-year-old man with something that sounds as mild as eczema or even a 37 year old who has something nebulous and hard to define like chronic pain. (I mean, we’ve all had pain and powered through it, right? Assuming you even believe fibro is real in the first place.) Still, I’m glad she was able to get it when she needed it most. And that you were able to get yours too.
Good Luck today! I never knew the process was so long.
He is very lucky to have you as his wife. Not everyone would be so patient and understanding.
We’ve both had to be pretty patient and understanding of each other when it comes to health stuff. For the first two years of our relationship I was on disability and really (other than finances) not terribly functional life-wise. But yeah, he’s well aware that he lucked out 😉
I am very “lucky” that dialysis patients are typically approved for SSDI on the first go around. But outside of being a dialysis patient, I had heard that the process of getting approved takes a couple of years. I have been a taxpayer most of my adult life, and I am appalled by the dehumanizing process. I also have no idea how most people make it on the paltry payments they get. It makes me count my blessings that I had LTD through my employer and I have a husband that makes a respectable salary.
It is hard enough to maintain your self worth when you can’t work without being put through hell by the system. I can’t imagine how hard it has been on Tim, but have him read the comments here so he can know that he is in good company. In my early years of illness, I felt alone. Now that I am older, I have come to realize how common this level of disability and suffering is. In our society, serial killers have more visibility than the disabled.
Ha, I love the serial killers comment. I think that’s because people are much more sure they won’t become serial killers than they are that they won’t become disabled. And serial killing is probably far more satisfying too.
I’m glad at that least some people have an easy time of the approval process — inasmuch as anything with the SSA is easy. But yes, it’s dehumanizing, demoralizing and all sorts of other adjectives. He does read the comments, though, so he knows and appreciates that you guys are so supportive.
WOW , I never really knew the process behind SSI. I do know that subsided housing has a LOT of pitfalls long waiting list, limited number of units available, having to recertify every year plus inspections of the unit yearly. And believe me if you ever get a raise or bonus of any kind it def. won’t help you to stay in your place.
This really scares me question: how can healthy people protect ourselves in case we get a disease or something happens to us???
I think the best way to protect yourself is to look into long-term disability insurance while you’re still healthy. Long-term care isn’t a bad one to consider either. If you do end up disabled, definitely talk to any loved ones about potentially “gifting” them some of your savings when it comes time to apply for disability. Not that I’d EVER tell someone to hide assets from the government mind you. That would be WRONG. But if you do have enough savings to disqualify you from Social Security, you can thank trustworthy family members with a tax-free gift of money. And if you should ever need some funds during the disability process… Well, they might be kind enough to help out with some of your bills, eh?
Unfortunately, there’s no way to actually protect yourself from disease and disability. You can do your best to be healthy, keep up on your medical care (address issues as they arise, etc) and hope for the best. While many people end up with some chronic condition (diabetes, arthritis, etc) only a fraction end up with disabling conditions. So statistically you’ve got a good shot at being lucky in that regard.
BUT…. something, something BOOTSTRAPS! Right?
What is that saying about judging a people by how we take care of those in the most need. I’m sorry you have to go through this, a close friend of mine has gone through something very similar.
We have this ingrained Protestant work ethic in this country that drills into us that if you aren’t working , producing, etc. you are worthless. We absolutely have to get past this idea that asking for, and accepting help is a mark on your character, that any assistance from the government is a bad thing. THAT IS WHAT THE GOVERNMENT IS FOR. “For the people…”
Why even go on and on about preserving our freedoms if the people for which we are preserving those freedoms don’t have the necessary tools for a functional life. Oh, right, it’s an election year.
Sorry, I obviously need to watch less news today
Haha, I totally get it. And yes, the Protestant work ethic is incredibly dangerous to morale. I read Max Weber’s book about it when I had to apply for disability. Understanding (theoretically, anyway) the cause of the bias helped me feel a little better about being the… bias-ee, I guess?