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Akoto

(4,261 posts)
Mon Apr 1, 2013, 09:12 PM Apr 2013

On Being Disabled

Last edited Thu Apr 4, 2013, 11:08 AM - Edit history (2)

I don't know why I felt compelled to do this, but I'd like to repost a reply I wrote to someone a few nights ago concerning people "scamming" the disability system. As I've frequently mentioned, I am disabled myself with an incurable pain condition. The day after tomorrow, I have to make the all-day trip to the University of Miami for a pain management visit, a trip which always strikes terror into my heart due to the distance. Perhaps that's why it's on my mind. Perhaps it's also because, as my condition gradually but surely worsens, one of the items on my bucket list is to advocate for the disabled before a large audience. I wish I could do it before a government panel, in fact, but the nearest congressman in Florida who might support it is Alan Grayson - not in my district, so I don't know how to contact him directly.

So, here it is. Read it through, think it over, perhaps learn something you didn't know. The disabled live a Hell most people can't imagine, and that's understandable, because the human mind wasn't made to process the things our bodies are dealing with. Still, trying to understand goes a long way, much more so than pity.

-----

It took me over two years plus a really good lawyer and University-level doctors to get approved. That was on my third try, when I went before the Administrative Law Judge (who actually had to look me in the eye as I told my story instead of rubber stamping a denial).

You can't just walk into the local SS office and get SSI/SSDI. It is a grueling, excruciatingly complex and delayed process for anyone who does not have the most severely obvious disabilities, such as paraplegia or something like that. I had a double whammy in that I am only 28. My disability first began to present at 17, went chronic in my mid twenties. I also have a disability which is rare and little known, an 'invisible' illness only very well educated doctors can see the signs of. I'll get back to that latter point in a bit, because it's important.

My first two applications were denied almost as a matter of course. On the second time around, even though I was going to a University-level specialist, they had me see a SS doctor. A homeopath who really had no clue what my condition was or how deeply the pain and pharmacy of medications impact my life. In the end, I was required to go before a judge on the third try, which is where most people have their best shot. Remember, this wasn't weeks or months. This was years of persistence, of languishing in my illness as the bureaucracy sought ways of denying me.

I was fortunate. When I went before the judge, my evidence and the credentials of my doctors overwhelmed the fact that I had a rare, invisible condition. The ruling was fully favorable. However, in order to get there, I had to stand before a conference table of strangers and relate every minute detail of my condition. My pain is pelvic in nature, and I mean everything pelvic, so you can imagine how humiliating that experience was.

As I became ill when I was young, I didn't have the work credits for SSDI, so I had to take SSI. I'm grateful because Medicaid came with it and pays for my many medications. Otherwise, I get $710/mo. That is the cap. I receive the cap because I have an agreement with SS that I'll pay my parents what's called Fair Share, or an equation based upon total expenses of the household. In my case, that's $370/mo. So, right there, you have my funds reduced to $340/mo. Ironically, I was keeping more money without paying fair share, but at least this helps my folks.

You must then consider the expenses that small amount of remaining disability funding has to go toward. Dental care, for example, is not covered unless you want to go to county health to get your tooth yanked. I have to maintain a very expensive diet consisting of various dried fruits and whole wheat in order to keep my gut moving, due to all of the pills. Then, you have clothes. You have gas bills to get to the doctor. So many things. If you're very lucky, you might manage to scrimp away a little each month and eventually buy something for yourself, like a book or a video game. Something to keep you sane while you're housebound.

Oh, and then there's the reviews. The medical reviews to prove that, yeah, your body's still torturing you. The financial reviews where they intrusively examine your expenses to see if you've ever violated the rules. I keep a book which notes everything I pay for. Every. Single. Receipt.

Now, about the invisible illness thing. The term refers to people who have disabling illnesses not readily apparent to the naked eye. When we think of the disabled, we think of people who are mangled or whose bodies are obviously not functional in some way. People don't tend to consider that someone may have a neuropathy, a degenerative spinal condition, a hip issue, or any other number of things. In my case, I have Chronic Pelvic Pain Syndrome with Pelvic Floor Myofascial Dysfunction. If you were to look at me, I'd seem as healthy as can be, yet I'm in constant pain. I walk with a cane so that I can catch myself when the neuropathic shocks come. I lay down and stand because I'm unable to sit. I dread going to the bathroom because the pain in the aftermath means having to sit in the tub for some relief.

Don't judge the disabled. No matter how they look to you (and we do get very good at hiding our illnesses - most of us don't want the attention or pity), they may be living a Hell you can't begin to imagine.

EDIT: Wow. I didn't quite expect this level of recognition from my post, but I'm grateful for the well wishes and suggestions! I know my choice of words may have been rather blunt at points, yet I feel that's the only way to get through to some people.

So, since it was suggested to me, I'm going to do a shameless plug. Want to make me happy? Check out the following post and help me out if you can, please (please, please, please): http://www.democraticunderground.com/1018352086

It's an odd request, but it's better than staring at the ceiling all day, as in my case. Thanks.

85 replies = new reply since forum marked as read
Highlight: NoneDon't highlight anything 5 newestHighlight 5 most recent replies
On Being Disabled (Original Post) Akoto Apr 2013 OP
This message was self-deleted by its author freshwest Apr 2013 #1
My brother just got SSI duffyduff Apr 2013 #2
Very true. It is extremely important to stay on top of the doctor/records. Akoto Apr 2013 #4
There isn't anything that can be done about my brother duffyduff Apr 2013 #7
I can relate. Akoto Apr 2013 #8
The person I talked with from SS basically said they are looking for anything unusual duffyduff Apr 2013 #11
Thanks for sharing your story with us. undeterred Apr 2013 #3
This might help you contact Alan Grayson, since he posts here. :) M0rpheus Apr 2013 #5
Familiar with "invisible illness" KT2000 Apr 2013 #6
invisible cancer sigmasix Apr 2013 #76
Spare yourself KT2000 Apr 2013 #77
K&R Starry Messenger Apr 2013 #9
Thank you so much for posting this. thucythucy Apr 2013 #10
I agree mike978 Apr 2013 #49
Brilliant writing, Akoto Iwillnevergiveup Apr 2013 #12
K&R nt Zorra Apr 2013 #13
That was my post and I apologize for it being a little too heavy on the "scamming" aspect. brewens Apr 2013 #14
Backs are a sore point with me. Literally. Ms. Toad Apr 2013 #16
until one experiences extreme back pain riverbendviewgal Apr 2013 #42
I have a neck spasm that does that to me - Ms. Toad Apr 2013 #44
I am retired so I don't have a financial problem riverbendviewgal Apr 2013 #48
If the economy didn't suck so much, many disabled would be working TexasBushwhacker Apr 2013 #21
Scamming = Sen McCain n/t kickysnana Apr 2013 #24
Aside from the rest of your bs, whatever system you are in is not Social Security Disability Bluenorthwest Apr 2013 #29
That ruling came from my state L&I. I work with lifting restrictions. I'm brewens Apr 2013 #65
So you are comparing apples to oranges when comparing your situation with the OP's for your was a Bluenorthwest Apr 2013 #68
I am fighting a similar battle, Mr.Pain Apr 2013 #15
Welcome to DU. progressoid Apr 2013 #22
Best of luck with all of this thucythucy Apr 2013 #32
It's hard for me to accurately imagine what you're going through. No Vested Interest Apr 2013 #60
There are a lot of people worse off than me. Mr.Pain Apr 2013 #80
Drugs are bad, no doubt, but as a wise friend No Vested Interest Apr 2013 #81
Asoluteley not Mr.Pain Apr 2013 #83
I got SSI in two weeks GiveMeFreedom Apr 2013 #17
I am so sorry, I wish you much strength and courage Voice for Peace Apr 2013 #36
k&r liberal_at_heart Apr 2013 #18
You're very eloquent -- Thank you for your posts Hekate Apr 2013 #19
K&R & thank you. Kurovski Apr 2013 #20
Akoto,I salute thee DonCoquixote Apr 2013 #23
Both you and Akoto are so eloquent in sharing your story... OneGrassRoot Apr 2013 #26
Thanks DonCoquixote Apr 2013 #30
Thanks for sharing grantcart Apr 2013 #33
yes yes yes Voice for Peace Apr 2013 #37
K&R n/t OneGrassRoot Apr 2013 #25
Many Of Us Can Relate grilled onions Apr 2013 #27
You must be an amazingly strong person. bunnies Apr 2013 #43
If I Had Had A Crystal Ball.. grilled onions Apr 2013 #46
Re: How do you deal with it Akoto Apr 2013 #47
shame. bunnies Apr 2013 #53
I'm disabled madokie Apr 2013 #28
Invisible disabilities pipi_k Apr 2013 #31
Thanks for sharing grantcart Apr 2013 #34
re:On Being Disabled allan01 Apr 2013 #35
You are entitled to your opinion mike978 Apr 2013 #50
and if the bloody ss cap was removed DonCoquixote Apr 2013 #55
I agree with the idea of removing the SS cap mike978 Apr 2013 #57
prevention does not remove cure DonCoquixote Apr 2013 #62
Are you really equating Ms. Toad Apr 2013 #63
I have read all of the comments mike978 Apr 2013 #69
You didn't pay much attention to the comments Ms. Toad Apr 2013 #72
I did read the comments mike978 Apr 2013 #74
I wrote a long response last night - Ms. Toad Apr 2013 #84
How exactly do you want disability spending to be 'moderated?' Akoto Apr 2013 #66
The growth moderated mike978 Apr 2013 #75
K&R! Voice for Peace Apr 2013 #38
Share with your Congressperson anyways One_Life_To_Give Apr 2013 #39
Absolutely!! Talk to your Congress Person and you will be surprised at their speed in acting! AtheistDragon Apr 2013 #73
K&R. cliffordu Apr 2013 #40
i am so sorry you have so much pain. riverbendviewgal Apr 2013 #41
I have a more obvious disability Malone Apr 2013 #45
A Lifetime of Hiding My Disability otohara Apr 2013 #51
I feel guilty at how fast I was granted disability under SSI... WCGreen Apr 2013 #52
I thank you for sharing this. mwooldri Apr 2013 #54
You have the same condition as a friend of mine. Sirveri Apr 2013 #56
Ah, yes. The cushion. My constant companion. Akoto Apr 2013 #59
So true Rider3 Apr 2013 #58
Chronic Fatigue... Kalidurga Apr 2013 #61
Invisible.. undergroundpanther Apr 2013 #64
I wish you well, but I have some questions. JDPriestly Apr 2013 #67
You're asking for answers way above my head, truthfully. Akoto Apr 2013 #71
You make a great point that the disabled don't always appear that way. OnionPatch Apr 2013 #70
I know how you feel, in a way. Akoto Apr 2013 #78
No, it's not that bad. OnionPatch Apr 2013 #79
I'd try to not think that way. The mind has such a powerful influence. Akoto Apr 2013 #82
A kick for more readability. N/t Akoto Apr 2013 #85

Response to Akoto (Original post)

 

duffyduff

(3,251 posts)
2. My brother just got SSI
Mon Apr 1, 2013, 09:22 PM
Apr 2013

Last edited Mon Apr 1, 2013, 10:15 PM - Edit history (1)

It took us almost two years, but the ALJ approved him for it because his psychological issues impaired his ability to ever be able to hold down a regular job.

It really depends on the judge you get. It's a crapshoot. The lawyer we had said some judges will approve as many as 85 percent of their cases, while others approve as few as 15 percent.

The doctor's report is all important.

Akoto

(4,261 posts)
4. Very true. It is extremely important to stay on top of the doctor/records.
Mon Apr 1, 2013, 09:24 PM
Apr 2013

We made certain to get a copy of every single record from every visit, and when the doctor said I was disabled, we made certain that he noted that opinion in his records henceforth. I think it probably made the biggest difference, that and my physical therapist's explanation of my condition and what we go through.

 

duffyduff

(3,251 posts)
7. There isn't anything that can be done about my brother
Mon Apr 1, 2013, 09:34 PM
Apr 2013

because his anxiety and personality disorders won't get better, and it was noted by the psychologist who examined him. He's about 55 years old, and the chances are zilch he's going to change.

I don't like being the representative payee, however. My brother can pretty much handle his own finances. We just need to keep the receipts and stuff and file them.

Akoto

(4,261 posts)
8. I can relate.
Mon Apr 1, 2013, 09:49 PM
Apr 2013

There is little to be done for my condition, too. Some physical therapy techniques hold promise, but otherwise, it's pain management or dangerously experimental surgery.

I have since been diagnosed with anxiety and depression, but it is caused by my illness, not the other way around (something my good psych made certain to note in a letter to pain management). As such, I handle my own finances, but I still keep every receipt and note everything once more in a notebook.

It has never been clear to me exactly what I can use SSI for, as I have never had a financial review and SS never gives a straight answer. I was once told that it was my money, and so long as I do my Fair Share payment, I can buy what I like. Let them penalize me over the games and the books; they aren't the ones who need distraction to hold it together.

 

duffyduff

(3,251 posts)
11. The person I talked with from SS basically said they are looking for anything unusual
Mon Apr 1, 2013, 10:12 PM
Apr 2013

They aren't going to penalize you for entertainment expenses; according to the pamphlets, those are perfectly acceptable expenses.

I think the big sticker is if somebody else abuses the funds. That's happened many times with representative payees.

I am hoping that I can eventually get my brother to just take it over completely. My understanding from the bank is all I have to do is basically transfer the funds from the special account over to his regular bank account, and he takes it from there. Then we will just keep the receipts of his expenses.

KT2000

(20,544 posts)
6. Familiar with "invisible illness"
Mon Apr 1, 2013, 09:32 PM
Apr 2013

It makes it doubly difficult - even from relatives who do not understand.

sigmasix

(794 posts)
76. invisible cancer
Wed Apr 3, 2013, 02:08 PM
Apr 2013

I was diagnosed with a rare form of intestinal cancer in 2003. The surgeries and daily chemo have made it impossible for me to work and I was able to get approved for disability on the 1st attempt because I had a very good social worker for my case. No one can see the hundreds of tumors that fill my abdomen, not is there evidence of the 4 major surgeries I have had to remove many of my organs and intestines. I am forced to take huge amounts of morphine, opium and dilauded to even function, let alone leave the house. My teabagger brother and his wife claim that myself and my wife are making it all up for attention and social security. We invited them to come and meet with my care team at the cancer clinic and my oncologist has even volunteered to come to thier house and explain the seriousness of my illness, but they refuse to speak to him- they claim we bribed him to say I have cancer. My brother and his wife have repeated these accusations about me for 7 years, as I grow weaker and lose more and more of the time I have left.
My wife and I have rid ourselves of these toxic teabaggers presence by informing them that they are no longer considered family by us. They continue to spread lies about my illness though so we are considering sueing them.

KT2000

(20,544 posts)
77. Spare yourself
Wed Apr 3, 2013, 03:19 PM
Apr 2013

the lawsuit and engage in more positive pursuits if you can. Parting company is the best way as there is something beyond logic that makes them behave this way. It feels horrible I know but they will not change their minds. Someone posted an article referring to the teabagger regard for others as sadism. I think that is pretty close to the truth.

I'm sorry you are having to go through this - peace to you.

thucythucy

(7,986 posts)
10. Thank you so much for posting this.
Mon Apr 1, 2013, 10:12 PM
Apr 2013

People with disabilities are a favorite target for the right wingers wanting to cut "waste," and even some progressives have this ridiculous notion that disability is some sort of gravy train, that people with disabilities have it "easy." Far from the case. All the people with disabilities I know have to deal with, not only their own particular disabling condition or illness, but also with the absurd, Kafkaesque social safety net--which is inadequate at best--and people who do not or will not understand that they are going through.

I wish you all the best in coping with the deck life has dealt you. And I admire your eloquence--and your courage--in posting here.

Best wishes to you and yours,

Thucy

PS: Have you ever seen the film "When Billy Broke His Head?" by Billy Golfus? It does a great job explaining what a messed up system we have for providing necessary supports to people in your position. Also "Lives Worth Living" which was on PBS about a year or so ago. Finally, there's a new book out, "What We Have Done: An Oral History of the Disability Rights Movement." You might be able to get one or all of those at your public library.

Best of luck. Thucy

 

mike978

(68 posts)
49. I agree
Tue Apr 2, 2013, 01:44 PM
Apr 2013

that some attack disabled people just because they can.
But the recent NPR series about disability benefits does show some problems, how can claims double every 15 years when the world of work is, in general, safer and people, on balance, have better healthcare than they did in the 1960's, 70's, 80's etc. I know there are poverty and socio-economic issues, unfortunately that has been the case for a long time. With an increase from the 1980's (Reaganomics for you) but disability has gone up 400% since the 1980's. This is unsustainable.
Hearing some of the interviews on the NPR piece was enlighting - like the woman who couldn`t think of a job you can do sitting down, other than being a Social Security administrator. Or the fact that the Government does not have lawyers present at appeals, so the judge (who is also there to represent the Government bizarrely) has just the lawyers on the plantiffs side to talk to. The lawyers from groups like Binder and Binder who rake in huge fees ($60+ million last year) doing this work.

Iwillnevergiveup

(9,298 posts)
12. Brilliant writing, Akoto
Mon Apr 1, 2013, 11:11 PM
Apr 2013

Thank you so much for posting this information. Frankly, I don't know how you pull yourself together to write so eloquently. A very dear friend of mine is a judge for S.S., and the horror stories he's told me over the years are unbelievable. He has always been very, very conscientious during hearings AFTER he's poured over medical records and anything else germane to the case. This cannot be said of some of the other judges he works with. They are under great pressure to produce, produce, and usually near the last day of the month, I take him out for dinner because he's worked so many long hours, including most Saturdays to get his cases signed off. The office is short-staffed which, of course, severely slows down applications, but it doesn't appear new judges are being hired.

I agree with those who have suggested you contact Alan Grayson. If he can't help you directly, he no doubt knows someone who can. You are so very young and deserve to live out the rest of your life as pain-free as possible. You could just send him what you posted here.

Please keep us updated on your progress, won't you?

brewens

(13,400 posts)
14. That was my post and I apologize for it being a little too heavy on the "scamming" aspect.
Mon Apr 1, 2013, 11:28 PM
Apr 2013

I could have made a few points better. My main point at the start was to blame Republicans for driving the increase in claims, doubling every 15 years. The way jobs are now, I'm convinced you have many people claiming disability that otherwise could stick it out to retirement, if they had a retirement to look foreword to. That doesn't mean I think most of them are phony.

Then I threw in a couple of anecdote examples of people I'm convinced ARE scamming the system. That mainly as an example of people that are screwing it up for the rest.

I can't resist throwing in another hilarious one. I know a guy who bailed out of the postal service with a bad back and got busted for elk hunting and packing out the meat! He got caught and I think prosecuted for fraud. He's also a great golfer and is now a golf pro! I shit you not! That has to be some bad back there buddy! This was as my other anecdotes a couple of decades ago. I think it was much easier to pull that kind of thing off back then.

One thing I heard from a couple right-wingers is that Obama put back in the disability for alcoholism. That one I know is not true. Alcoholism can be a contributing factor but if they determine that you wouldn't be disabled if you quit drinking, you're out of luck.

I'm officially 35% disabled with an artificial knee. I'm convinced I could have parlayed it into total disability and had people tell me that I should. I didn't because I know that's not enough money. Instead, the day after I was finished with the physical therapy, I joined a gym and hit the iron pile hard! I walked in there with a cane and was done with that in a few weeks. It took me six months to get into shape to get back to work though.

I never returned to my route driver job but went to work full-time for the American Red Cross as a blood bank tech. That's not what it sounds like really. It's more like a shipping/receiving blood bank guy, at least what I was doing.

Ms. Toad

(33,915 posts)
16. Backs are a sore point with me. Literally.
Tue Apr 2, 2013, 12:08 AM
Apr 2013

I have a longstanding back injury, for which I received a partial permanent disability award. The review was a joke. The worker's compensation doctor ran a standard set of tests that had absolutely nothing to do with the particular injury I had - and, frankly, I was afraid they would not find a disability because I could have run circles around the tests they asked me to perform, and I needed access to ongoing medical care which is not covered by insurance when the injury was a result of work related activity, and enough of a cash payout to pay the attorney's bills. If I recall correctly (it was nearly 30 years ago), I was declared 25% disabled.

I can wear/carry enough gear for cold water beach diving walking over a rocky beach in the NW US. I can ride my bike (racing posture) 150 miles over two days. I can even lug 80 lbs of salt for my water softener from my car trunk to the water tank. I could probably pack out elk meat if I felt like hunting.

What I can't do is sit in a stackable chair for more than 15 minutes - or I'll be in pain for a month (assuming I start immediately with 12-18 hours of heat daily). I also can't hold even a pound in my right hand if my right arm is raised to the side any more than about 30 degrees from vertical, or bear any downward pressure on my head or my right shoulder. That means that even though I can do things that would convince you I scammed the system, I have a back injury that would prevent me from being a postal worker, not because of the weight of the bag - as long as I carried it over my left shoulder, but because I would be unable to use my right arm to lift the mail and packages to put them in mailboxes.

You are not inside my skin, and don't know how disabling my back condition is - or the kinds of activities my particular back issue prevent - any more than the people who are telling you that you should have gone for 100% disability know what you are capable of. Please don't judge (or laugh) at situations you really can't know.

riverbendviewgal

(4,251 posts)
42. until one experiences extreme back pain
Tue Apr 2, 2013, 12:04 PM
Apr 2013

It is hard to believe. My friend had such pain. She looked healthy. I wondered about painful her pain was. But then I had a fall and got a crushed tailbone, then led to sciatica and deteriorating facets. I have arthritis now. Most days the pain is bearable but some days I sty in bed.

Ms. Toad

(33,915 posts)
44. I have a neck spasm that does that to me -
Tue Apr 2, 2013, 12:39 PM
Apr 2013

I could actually function through it - but if I don't take the time to lay around doing nothing with my neck on a properly supported heating pad, the spasm continues for weeks.

But my point was more that even with a fairly severe disability for certain things, there are many things which I can do easily that would lead someone with a "people with "real" back injuries can't do this checklist" to decide I was faking it. Disability checklists (i.e. presumptions about how a particular disability will impact everyone with that disability) just don't work - and they make it a lot harder for those of us with anything other than the standard manifestation of a particular impairment because we not only have to live with the disability, but we have to live with the scorn heaped on us by those who believe we are faking it.

Personally, I'm not impaired from earning a living - I use my mind, rather than my body. But I could easily have ended up on permanent disability if I relied on my body to earn my living - for example if I had come from a different family, with different expectations about the importance of education or had decided (as a friend did) that his body was for rent; but his mind was not,

riverbendviewgal

(4,251 posts)
48. I am retired so I don't have a financial problem
Tue Apr 2, 2013, 01:35 PM
Apr 2013

I have been working on lessening the pain by getting better mattress, pillow , meditation and theraphy as in massages and exercise. I know what movements cause me to have pain and try to steer away from them.


I had problems while working and was able to get company short term disability.
This is with a Canadian company with benefits that enabled me to get this.

This company was not a union company but to keep the Union away opted to give very good benefits and good salaries.

I am a pro union woman who recognizes unions are good for the country.

TexasBushwhacker

(20,044 posts)
21. If the economy didn't suck so much, many disabled would be working
Tue Apr 2, 2013, 02:19 AM
Apr 2013

Even though employers aren't supposed to discriminate against the disabled, if they have 2 applicants for a job and 1 has a disability, who are they going to choose? I think applications for SS have gone up, in part, because previously employed people with disabilities have been forced to apply because they couldn't find anyone who would give them "reasonable accommodations".

I worked with my disability for over 30 years. Sometimes it was hard. I had to change careers because of it. I did pretty well for a while. The last few years though, the longer I worked, the more ill I got. My family pushed me to apply for SS. They wanted me to take a break and get my health back, but I kept working. Then I was laid off with a bunch of other people. My family encouraged me again to apply for SS. So I did, just to appease them. An acquaintance recommended an attorney, so I figured, "What have I got to lose?" He actually had me fill out the papers with far more details than the applications asked for. He said the applications were misleading and didn't ask for the information they really needed. Oddly enough, I was approved on the first try. I still would rather be working though, and hope I'm healthy enough to work part time in a few months.

 

Bluenorthwest

(45,319 posts)
29. Aside from the rest of your bs, whatever system you are in is not Social Security Disability
Tue Apr 2, 2013, 09:18 AM
Apr 2013

because SS does not assign 'percentage' of disability. No such thing as 'officially 35% disabled' under the system everyone here is discussing. You must be dealing with VA or with a private insurer, not the SSA. Or you are just making the entire thing up. Hard to tell because of all the fumes escaping from your words.

brewens

(13,400 posts)
65. That ruling came from my state L&I. I work with lifting restrictions. I'm
Tue Apr 2, 2013, 10:20 PM
Apr 2013

only supposedly allowed to be on my feet for three hours. I think the 35% was for calculating my disability payment. As far as my current job goes, I do exactly what all the other with my job description do.

 

Bluenorthwest

(45,319 posts)
68. So you are comparing apples to oranges when comparing your situation with the OP's for your was a
Wed Apr 3, 2013, 08:35 AM
Apr 2013

worker's comp claim. Nothing to do with Social Security or SSI. Had you been unable to return to work, you would have left the system your State calls Labor and Industry and entered the Federal system. This also would be the case for those whose disabilities are not the result of a work related accident or condition. A regular old disease, an injury outside of work these are not deal with as yours was, as a worker's comp case.
You went through the system. Others in your State going though the same system are not able to return to work, and eventually the State suggests that they apply for the applicable benefits under the SSA. You never got to that stage, clearly you did not need it and the system worked. Others do need it, do get it and that is also the system working.
You were lucky, and got better. So you know about the Worker's Comp in your State. Which State is that? WA? PA? The Labor and Industries Department in Oregon does not do Workers Comp. The Consumer and Business Services Department handles that.
http://www.cbs.state.or.us/wcd/index.html

Mr.Pain

(52 posts)
15. I am fighting a similar battle,
Tue Apr 2, 2013, 12:05 AM
Apr 2013

I lost my left foot from an accident and the doctors tore up my left arm trying to fix a foot that eventually got infected and had to be amputated. I cannot work full time due to pain issues. I have been denied once, got a lawyer, but I haven't wanted to see another doctor since they amputated. I refuse to take their poisons, as now I have continuing tinnitus from vancomycin, I had physical dependence on pain killer drugs that made me swear off every thing the doctors want to push. (What a nightmare). I'm in a holding pattern trying to manage my own health without doctors, I only have what income I can muster from what little odd jobs I can perform. Hoping now for a miracle.

thucythucy

(7,986 posts)
32. Best of luck with all of this
Tue Apr 2, 2013, 10:22 AM
Apr 2013

Mr. Pain. I wish I could offer some great suggestion or solution for what you're going through, but I can't. All I can say is the system sucks, which you obviously know already.

Also, welcome to DU.

No Vested Interest

(5,157 posts)
60. It's hard for me to accurately imagine what you're going through.
Tue Apr 2, 2013, 06:03 PM
Apr 2013

However, respectfully, I'm a little alarmed about your decision to give up doctors completely. I understand you had a dependency issue and that formed your decision.

Maybe you need to be in the holding pattern at this time for your own psychological well-being, also understandable. That should give you time to look over the medical establishment in your area and locate someone you can trust to not over-medicate. You also have the time to educate yourself on what is best objectively and for your own particular case.

I'm just suggesting that an all-or-nothing approach is not not always the best, especially with each passing year. A middle ground or midway point can sometimes be found that works to your benefit.

Best wishes to you.


Mr.Pain

(52 posts)
80. There are a lot of people worse off than me.
Thu Apr 4, 2013, 12:59 AM
Apr 2013

Please allow me to describe the hell of physical dependency withdrawal.
After one of several surgeries to "repair" my badly damaged foot that would have left me permanently attached to a cane, I was prescribed adequate doses of Morphine to help with the pain. Having been experienced with the mind numbing affects of this drug I decided after a few day,(while still recovering in the hospital), to stop taking the morphine and get my head back on straight. That's when I started having problems. During the day when my mind was active and I was focusing on the real world, every thing was good, but when the lights went out and I wanted to sleep, something odd happened. My muscles in every limb and part of my body would feel as though they needed to be moved, stretched, I would try to tie myself into knots! after about 2 nights of this the nurses finally figured out my problem. I had to go back on the morphine, and slowly, gradually reduce the dosage. It took 2 weeks. Unfortunately I had to go through this process more than once as it was hospital policy that I had to be taking the morphine in order to be released. After the final "removal" of my foot was the same process. I like being coherent, and not addicted. Also another little demon had raised its head, while taking the morphine/ codeine/ oxycodone or any other opiate I had anger issues. It seemed that I felt rage at times when I had no reason to be angry at all. It took me a while to figure it out but over the course of a few years I had damaged relationships with out realizing it.
And now I keep seeing those BAD DRUG commercials on tv and even when they advertize a new drug the have a long list of very bad side affects.
Drugs are bad mmkay, (to quote a south park character

No Vested Interest

(5,157 posts)
81. Drugs are bad, no doubt, but as a wise friend
Thu Apr 4, 2013, 02:28 AM
Apr 2013

said to me many years ago - "Be glad we have them."
Meds - one form or another- are necessary to some just to function and to give space to recover physically.
Thanks for your further explanation, and best wishes.

P.S. - Could "restless leg syndrome" have accounted for the feeling that every muscle needed to be moving, stretching?

Mr.Pain

(52 posts)
83. Asoluteley not
Thu Apr 4, 2013, 01:14 PM
Apr 2013

Every muscle in my body was showing the reaction, and it only came out at night. Since I got over it I have never had any episodes like it.
I agree that not all doctors are bad, nor are all medicines when used appropriately. Pain killers (of this type) should never be allowed outside of hospital environment, where proper care and oversight maintained. I has since been studying herbal medicines and have found many natural treatments for pain that do not involve narcotics.

GiveMeFreedom

(976 posts)
17. I got SSI in two weeks
Tue Apr 2, 2013, 12:18 AM
Apr 2013

after applying. The Social Security department put a compassion flag on my application. All I had to do was show them the medical files I had from my doctors. The diagnosis is what triggered Social Security agents to respond so quickly. I have metastatic renal cell carcinoma. Right now the cancer does not show to many outward signs yet, but it will. I look like I am ok, but the truth is far different. It's hard to explain to people some times, until I tell them I have an incurable cancer.

on edit: added metastatic

 

Voice for Peace

(13,141 posts)
36. I am so sorry, I wish you much strength and courage
Tue Apr 2, 2013, 11:06 AM
Apr 2013

and a heart filled with peace. This is not an easy fight, I know. I hope you've got good care and good support. If you don't, DU is a wonderful resource of great people who can help. Very best wishes for you into the future.

Hekate

(90,202 posts)
19. You're very eloquent -- Thank you for your posts
Tue Apr 2, 2013, 01:41 AM
Apr 2013

As a couple of DUers have pointed out in this thread, Alan Grayson is a DUer, so go ahead and write to him via the link here.

Take care of yourself, and I hope that some day a medication will be found that will put you in remission from this terrible disease.



Hekate

Kurovski

(34,655 posts)
20. K&R & thank you.
Tue Apr 2, 2013, 02:15 AM
Apr 2013

I know two people who fought for seven and nine years respectively, for disability.

They both had a specialist who was world renown as the pioneering specialist in the field.

It goes on and on.

Hell is the term.

Thank you again.

Oh hell, I'm the nine-year guy I mention.

DonCoquixote

(13,615 posts)
23. Akoto,I salute thee
Tue Apr 2, 2013, 04:16 AM
Apr 2013

and I would humbly like to offer another layer to this.

Many of the people that do not have a readily visible illness are those with a mental illness. Of course, our country does not like to address mental issues at ALL, except to ensure that we can still buy assault weapons. The closest I have to a visible symptom is a rocking tick of my back.

My fellow Asberger's Disease sufferer, Bill Gates, also has it, but if you do not already have the benefit of owning Microsoft, it can get you fired, especially as even the liberals seem to get "creeped out" by "that weird guy."

I went to school,and worked in everywhere from Prisons to Graveyards, trying to find anyone that would keep me long enough to earn a paycheck. However, I always got the lecture always given to Aspies "We know you are smart, but you just don't understand certain things." It got to the point where I got counseling, and then, lo and behold, I fit a profile to a T, including the fact that many fo my aspies tend to turn out more like me than Bill Gates, i.e. sporadic employment at best. I went and applied, which was humilating, especially as whenever my anglo friends talked about those "lazy hispanics on welfare" I pointed out that I was Hispanic, and nione of my family fit the stereotype. I went and I expected to be rejected, my lawyer told me that I would be rejected twice, and that would be the norm. I had to analyze every penny I made, and I remember, to this day, my mother looking at the paperwork, and saying that "I had to have made more than that.."

No, the Social secuirty office said politely, this is all he ever made." And while I realize the SS lady was trying to be polite, I felt like I was a gutted fish, here I was, with nothing to show but student loan debt. I knew my Mother understood that there really was somethign wrong with me, something that got me in the same damned loop.

My parents accept me, but it hurts knowing that, as far as the rest of the world cares, I am spoiled goods, because I don't process the little cues that people socialize with, and we know damned well half of money making is making people like you, competence be damned. Of course, people say you are lazy, or dumb, because any mental issue that keeps you from beign super dooper rich in America is just something to be fixed with a book, a catchphrase, or church!

Eventually, my lawyer bypassed florida,and had me apply at the federallevel. I wound up speaking to a box,literally. Florida wasso overwhelmed that they had close circuit judges from Atlanta. The judge I spoke to looked like old school 8 bit gralhics...the only thing I can tell is that he had a mustache, and was Black. Thank God I played all thsoe video games, I could interact with this as well as any other icon, and better than I could with people. I won my coveted 900 a month, which of course, stretches out once you learn to avoid supermarkets.

I truly hate the Calvinist, protestant work Ethic, the one that says that your job is somehow a window to whether God likes or hates you. Never mind that bit where a certain carpenter said that rich people would be a fat camel sliding through the eye of the needle. We accpet the fact our jobs are our masters, and resent it when anyone does not work as "hard" as we do. Of course, if hard work were the panacea America thinks it was, the migrant workers would be the billionaires.

 

Voice for Peace

(13,141 posts)
37. yes yes yes
Tue Apr 2, 2013, 11:09 AM
Apr 2013
I truly hate the Calvinist, protestant work Ethic, the one that says that your job is somehow a window to whether God likes or hates you. Never mind that bit where a certain carpenter said that rich people would be a fat camel sliding through the eye of the needle. We accpet the fact our jobs are our masters, and resent it when anyone does not work as "hard" as we do. Of course, if hard work were the panacea America thinks it was, the migrant workers would be the billionaires.

grilled onions

(1,957 posts)
27. Many Of Us Can Relate
Tue Apr 2, 2013, 08:29 AM
Apr 2013

Unfortunately we are "sickies" in a healthy world. My downward spiral started at 15 when I was diagnosed with arthritis. Again most would say "But it's ONLY arthritis--my aunt had that". There are many forms of arthritis and degrees of severity. Mine started slowly but deformed early on. Filing for disability was a given by the time I was 30. An old age disease is what they think and "faking it" was always what many thought I was doing. One of the physicals I had to take to prove my inability to continue as gainfully employed was with a doofus who had no idea what arthritis even was. As he looked at my gnarled hands,wrists,knees etc he asked "Were you in a car accident?" That just proves they have little grasp of of situation. It took two tries and countless hours to on get disability. But even then I got threats from something as simple as a handicapped sign that went into the car window.I couldn't drive but still needed that short cut for medical visits and the morons yelled because I looked too young--I was not in a wheel chair--yet.
Even in simple conversation one would ask "what do you do" and all I could say was what I DID and that I am now on disability. The loss of respect showed in their eyes and contempt for milking the system. The only people that understand are those who are in the same boat or have a friend or family member in this form of "fresh hell".
Support groups may help but then you have to walk outside and the glaring eyes of those who feel this is all a scam to not have to work starts all over again. I thought many times of how much I would like to see them in my shoes for 24 hours with the meds,the pain,lack of sleep(on a great night three hours and I can't even sleep in a bed at this point),the fear of "what's next". I have a hip that must be replaced because the joint is now "dead"--black on the x-ray. I also have side "dishes" like diabetes,lung issues,slipped disc(cannot walk now beyond a few feet with help). I am a ripe 62 but the body feels 92. Yes, like you it's a long haul made much worse by idiots who think this is our version of how to get paid monthly without even trying.

 

bunnies

(15,859 posts)
43. You must be an amazingly strong person.
Tue Apr 2, 2013, 12:05 PM
Apr 2013

I just recently was diagnosed with severe degenerative osteoarthritis. My elbow had bothered me for years but not having health insurance prevented me from seeking care. In November I lost all meaningful use of my dominant arm and with it, my job. My arthritis is so severe that the only thing that can be done for me is a complete joint replacement. But again, not having health insurance robs me of that option. The diagnosis itself has put me in the hole nearly 10 grand. And now I have zero income. In addition to my elbow, I have OA in my right wrist as well. And I just turned 40. The pain is so excruciating that some days I just want to lay in the road. How... HOW do you deal with it?

grilled onions

(1,957 posts)
46. If I Had Had A Crystal Ball..
Tue Apr 2, 2013, 01:13 PM
Apr 2013

...I would not "have gone gently into that good night". Each new problem,each new decade added something new to the mix. As I look back I can't believe there was so much going on and so little was told to me about it. Ever get the feeling you are living the life of a mushroom? You are kept in the dark and fed manure!
One of the things that kept me from(and still) keeps me from going nuts at times, since I rarely get out right now unless it's to something medical(like wound care) is a hobby of mine where I send homemade cards to groups that send them to seniors,shut in's and the chronically ill(almost all are poor) and most are certainly alone. It helps knowing I am cheering up one person that may be having a worse day than me.

Akoto

(4,261 posts)
47. Re: How do you deal with it
Tue Apr 2, 2013, 01:24 PM
Apr 2013

This is a very personal question, something you have to find your individual answer to. The only thing I can offer is my experience.

For me, pain management went only so far. The rest came down to mental distraction, and it's a more powerful tool than you'd think. I was a gamer before my illness, so I delved into gaming like never before. I'm especially into online gaming, as it's a social experience where you get to meet new people and work with them toward fulfilling goals. I think having a goal is something that's vital to the process of getting up every morning.

When I came to my own realization that my condition might be degenerative, I made a bucket list. I'm working on that now. I can still walk and talk, even if some days hurt like hell, so I'd best get things done now rather than regret not doing them later.

Lastly, be kind and forgiving to yourself. You have a chronic illness. It's not a point of shame, and doing what you need to do in order to ease the pain a bit (even if that means giving up on something planned for the day) is nothing to feel badly about. I've spent more days in bed than I can tell you, and countless hours in hot baths!

 

bunnies

(15,859 posts)
53. shame.
Tue Apr 2, 2013, 02:14 PM
Apr 2013

I hadn't realized exactly what it was that I've been experiencing until I read your post. Shame. And lots of it. I've only known I had this for about a month now and its incredibly difficult for me to process. I knew something was wrong of course, but I never expected it to be something that couldn't be "fixed". And every time someone says the word "disability" I really just want to scream. Yesterday I was talking to a vocational rehab counselor and she kept saying it over and over and over. "Tell me about your disability" ... "have you filed for disability" ... I thought I was going to lose it.

And I'm angry. At myself. My body, my fault. Right? I feel like a failure. Sitting here, not working, thinking about all the things I can't do. Thinking about the meds they're offering. Methadone?! METHADONE?! Is it that hopeless?! sigh.

But you have given me comfort Akoto. Thank you so much for the advice. Its nice to feel like someone understands.

madokie

(51,076 posts)
28. I'm disabled
Tue Apr 2, 2013, 08:55 AM
Apr 2013

and for me it pretty much happened over night. I was getting ready to head off to work and as I was putting my shoes on my left leg went into a cramp like I've never experienced before. I trudged on to work after I worked the cramp out but as soon as I stepped out of my truck the cramp came back with a venegance. I drove home with my left foot in the seat with me as that was the only position I could get in that relieved the pain any at all. Any way when i got home I called my wife at work, she's a nurse and works less than a mile from home so she came on home and we went to the VA. I'm in terrible pain and the VA is a 35 minute drive away but I manage. I spent the day there going though a whole battery of test, xrays, CT scans and at the end of the day I was told I have arteriosclerosis, hardening of the arteries. They put me on morphine but that was too much for me so they dialed it back to hydrocodone and I've managed since. Live in pain 24/7 even with the pain meds. The doctor at the VA told me that I might as well file for disability as my condition wouldn't improve in fact would only get worse. I filed and within three months I got my first disability check. A mere pittance compared to what I normally made finishing concrete but better than nothing. As a finisher I'd make almost as much in a day as what disability pays for a week so I'm not in this for the money. Rather I'd love to be working making a wage like I was before but those days are long gone now. To look at me one would think that I'm able bodied and all that and when I use my disability placard sometimes I can see others looking at me like I'm a criminal or something. I even had a gentleman tell me one day that they'd throw my ass in jail if they caught me. I just smiled and waved as I didn't want to get in a pissing match with a stupid ass person who had no idea as to what I live with.
For the record my cholesterol numbers, both high and low, are right where they say is ideal but yet I have blockage.
What ever you do don't ever judge the disable by appearances only is my advice to my friends here.

pipi_k

(21,020 posts)
31. Invisible disabilities
Tue Apr 2, 2013, 10:11 AM
Apr 2013

suck.

While I don't have a constant problem with the kind of pelvic pain you have, I do get it on occasion, and it's no fun. I can't even imagine what it must be like to live with it 24/7.

My disability is also invisible, and has caused various people to suspect me of malingering. Or outright scamming.

First of all, I have been getting panic attacks since the age of 10...50 years ago. Then it turned into panic disorder with agoraphobia at the age of 20. I've been getting treatment for 40 years.

I feel badly for people who have had to apply multiple times. I was approved on the first try, probably because of my treatment history.

And yes...people should not judge someone with an invisible disability because most times we ARE trying to hide it from others. We hide it because we don't want to be further accused of "acting sick to get attention". No. When my panic or agoraphobia are acting up, the LAST thing I want is attention. I want people to just leave me alone to get through it.

We look "fine" on the outside, but inside, where nobody else can see or feel, we are living a daily hell.

allan01

(1,950 posts)
35. re:On Being Disabled
Tue Apr 2, 2013, 10:45 AM
Apr 2013

@ I voted and all. it took me and my team 5 years to get ssi. after finaly being rubberstamped denials i asked for a administrative law juge. first hearing in sonora ca , ssi lost my file on an airplane going to sacramento ca via stocton ca. ssi asked for a continuance . there was a fellow next to us who turned out to be a expert for the ca state dep of rehabilitation spying on us . we challenged him and he fessed up and we asked him what to do . we brought the county mental health experts on board and my rep who went to speak for me didnt ( by the way the fancy ssi barasters in sacramento didnt even want to help me . now on ssi and in a low income apratment that i love . @ i voted . congrats on ssi , but it aint over , i was knocked down to $750.00 ,ssi felt that i had too much $ on hand and ssi felt they overpaid me, and i apealled . got my current earnings back (felt it would be a financial hardship at $750.00 and before u trolls say something lets see you live at 750.00 or 500 , the bare minimum. id love to see the 1% or congress try to live on that . Don't jump on me. This post is just my opinion, which I am entitled to. Thanks.

 

mike978

(68 posts)
50. You are entitled to your opinion
Tue Apr 2, 2013, 01:46 PM
Apr 2013

and your case sounds genuine but don`t jump on people who point out that spending doubling every 15 years is unsustainable. The $85 billion spent every year (and increasing) is more than the fiscal cliff tax deal brings in per year. I would much rather see disability spending moderated than see cuts in healthcare, education, parks etc.

DonCoquixote

(13,615 posts)
55. and if the bloody ss cap was removed
Tue Apr 2, 2013, 03:03 PM
Apr 2013

there would be no funding issue.

Now, I know many say "why shoudl I play for something I will never need?"

Well, here is the reality, with the economy going south, there are many people that used to be "upper middle class" who are finding out that a lay off or medical bill will send them right into that same office with the people they used to hate. You could tell who the new ones were, because they would be rude, and cut in line, really because they felt it was an insult to even be with us. And yet, after a while, their reality would sink in, like a dagger in the back.

Asfar as sayign what you would rather have moderated, sorry, you do not get to say some lives are worth less than others, which is exactly what attacking ss benefits is.

 

mike978

(68 posts)
57. I agree with the idea of removing the SS cap
Tue Apr 2, 2013, 03:46 PM
Apr 2013

however there is only so much money that can be spent on all the good things we want so yes some things do need to be prioritized. the question does need to be asked, why are disability recipients doubling every 15 years, when we as a society are certainly not getting any less healthy - reduction in smoking, safer workplaces etc.

I am not saying any live is worth less. Bear in mind that those same SS recipients will have benefited from parks, education, medicare/medicaid etc. It is not mutually exclusive. All I said was maybe the rate of increase needs to moderate down from 100% growth every 15 years.

What is your solution? Just to keep paying out ever more money? I would like a national health service that helps prevent illness and disabilities in the first place.

DonCoquixote

(13,615 posts)
62. prevention does not remove cure
Tue Apr 2, 2013, 06:43 PM
Apr 2013

especially when for every health advance, we have something that adds against it, even stress that will increase. As far as "paying out ever more money" well, before the Europeans started taking advice from Americans, they did pay out more money, and they not only were healthier than us (despite the fact they smoke like fiends), but they also had more for education, parks, etc.

The problem is we have a parasite cklass called the 1% that frankly does not care about killing the host, because it thinks China and India will glady let them suck them dry to.

Ms. Toad

(33,915 posts)
63. Are you really equating
Tue Apr 2, 2013, 07:27 PM
Apr 2013

being able to have enough money to barely survive, and access to health care (through SSI or SSDI) with parks and "good things we 'want'"?

You should really spend some time with people who are struggling to survive because they are disabled and do not have access to medical care because the annual premiums are more than they have access to in a year?

You are aware that people with disabilities are often underemployed and had some access to the means to survive and medical care via welfare/Medicaid and when those programs were cut the individuals they served who were unable to work had no alternative but to apply for disability, right? It isn't that more people all of a sudden acquired disabilities, but that the means to piece together enough through various assistance programs to survive and obtain medical care has been dramatically slashed. Cutting funds and programs does not make the people who needed that assistance vanish; they just move to another program they probably should have been in all along - or they don't make it.

This awful story was obviously, as some of the commenters note, written by someone who is very able bodied, with a superior attitude, and without the life experience to know better, but it at least describes the phenomenon I nave noted above - which is that the need doesn't vanish just because programs are cut.

ETA: Spend some time reading the comments for a glimpse into what is really at stake here.

 

mike978

(68 posts)
69. I have read all of the comments
Wed Apr 3, 2013, 08:50 AM
Apr 2013

and please point out to me where I have said they are false. I agree we need disability benefits and that there are many people in genuine pain and suffering. As a liberal I am very happy to pay my fair share in taxes, which I do.
However as liberals we like facts (we call out conservatives for not believing in evolution etc) and it is clearly a fact that having disability rolls doubling every 15 years is unsustainable long term. It is true we can remove the SS cap, I agree with that but you still have a choice where to spend money.
I can easily think of 5 worthy things to spend money on - pell grants for college, expanded headstart programs for poor kids, infrastructure which has long been neglected, better teacher pay and better prison and rehabilitation services for offenders.

That NPR series of reports (hardly a Conservative outlet) had some interesting things, like in 1984 that the definition of disability was widened significantly. Maybe that should be looked at. The other fact that stood out to me was that when people appeal (which is around 50% of people) then they can get a high priced lawyer (like Binder and Binder who make large profits) and the Government has no representation. Easy fix would be to get the Government represented so the true merits of the case can be ascertained.

Remember over $80 billion a year is spent just on disability (i.e. equivalent to the whole cuts inflicted by sequestration). So would you be happy to spend a further $80 billion (inflation adjusted) by 2028 when the bill will have doubled again to $160 billion a year?

Ms. Toad

(33,915 posts)
72. You didn't pay much attention to the comments
Wed Apr 3, 2013, 10:30 AM
Apr 2013

from people who understand the system. It was pointed out numerous times, for example, that the government is well represented - something the reporter got wrong. The courts have the ability to (and nearly always do) pull in experts to oppose the applications. And as for NPR not being a conservative outlet - approximately 80% of the comments were chastising for NPR for getting it wrong, many citing the fact that the report seemed to be an amalgam of right wing talking points and incorrect assertions - like the one you picked up on - which was designed to demonstrate that NPR is fair and balanced, and many of the others noted that the reporter seemed to be lacking the life experience required to really sort out the talking points from real concerns.

You seemed to have missed that the primary shift in people from welfare to disability is not the result of a changed definition, but of cutting funding for welfare, assistance which helped poor people with disabilities access disability programs which were previously inaccessible (because of the inability to obtain representation which was nearly essential to establish a disability), and of court decisions which determined that parents were entitled to support for their disabled children.

And, again, you seem to be equating what is essential for survival for people with disabilities with what is desirable to make our country more just. I believe we should invest in both but not the latter at the expense of the former.

 

mike978

(68 posts)
74. I did read the comments
Wed Apr 3, 2013, 12:41 PM
Apr 2013

and am ready to learn more. It is surprising if NPR got it so wrong, since they usually don`t.

Lets clear a few of the facts out then

do most people who apply get disability benefits?
has the cost and number of claimant doubled in the past 15 years (and int he 15 years before that)?
If it has doubled is it sustainable to double again in the next 15?
was the definition of disability loosened in 1984?

I think we should provide benefits, I am a big supporter of that and pay taxes, in part, for that. However as a matter of public policy there are lots of other things many would consider necessary to have a viable and well functioning country. People will of course lobby for what they want. Just like I have three young children so education is important to me, whereas others will have different needs.

I agree that there has been a shift from unemployment/welfare to disability and this has gone largely unseen or undebated. The NPR series made specific note of that and it should be debated. We should as liberals want public policy to be discussed and priorities set on a factual basis.

Ms. Toad

(33,915 posts)
84. I wrote a long response last night -
Thu Apr 4, 2013, 02:49 PM
Apr 2013

And apparently managed to delete it - and I don't know that I have the energy to recreate it, particularly since my browsing history is deleted nightly. So - from memory of the reports from 1990-2010 - Most people who apply do not receive disability benefits. The approval rate on first application was around 30-40%; on appeal it dropped to around 12%. Many people don't bother to go on to round 2, if they are denied at the first round (that was from a social security office report which I have been unable to quickly retrieve today).

Cost - as a deciding factor - is not relevant to me in the way you want to use it. If there are people in this country who do not have the means to purchase health care, food, and a roof over their heads for reasons of health or disabililty, supporting them should be our #1 priority, or very close to it. Health care which is affordable to everyone (which could prevent some but not all disabilties) would be a close competitor. Education, parks, early head start are considerably farther down the list. The former have to do with survival; the latter have to do with quality of life. So it would not occur to me to ask whether it is sustainable because treating enabling survival as discretionary treats the people who need it as throw-away people. Sorry. we can't afford you - just go die our of our sight, please.

The definition was changed in 1984 so that people whose disabilities are not easily objectively quantified measured - or who have numerous disabilities none of which would individually qualify for disability benefits but for whom the cumulative impact is disabling - can receive benefits.

My daughter is not currently receiving disability assistance, but has a condition that would theoretically qualify her. As is fairly typical, she actually has 4 chronic illnesses - 3 related, and the fourth which is the consequence of medication she was taking for one of the other three. She requires 10-15 hours sleep a night. How much she needs on any given night is unpredictable (making it hard to maintain a job), although it is somewhat dependent on the contribution of the activity of the 3 secondary conditions (and I have not verified whether those are listed disabling conditions are not). The 1984 change would permit her disability to be evaluated in the way her chronic illnesses work in her body - as a whole, not as isolated independent diseases.

In addition the impact of many conditions is not easily evaluated. I know how much she sleeps and how hard it is to wake her up every day. But the neurologist we went to, on the first visit, insisted that her sleep and fatigue issues were just because she was a young adult, and that is just the way life is at that stage of life. Her first test puts her just below the cutoff for sleep apnea (although sleeping on her back she is double the cutoff), she has 2 sleep architecture issues (almost certainly the result of one of her underlying conditions), and the next day when she was required to take 5 naps of at least an hour each, the longest it took her to fall asleep was 6 minutes. (Normal is around 20 minutes.) To say that the neurologist was shocked was an understatement - possibly because the unbearable is what she lives with on a daily basis and it has become her normal so she understates it when she describes it.

But - to the point - we have health insurance that paid for the ~$2000 test. How many people who are barely surviving because their disability prevents them from working a job that is full time and pays more than minimum wage - let alone provides health insurance - can afford to pay for the test that will provide independent evidence of the impact of the disability on their ability to function? The changes in 1984 permit consideration of things which cannot (or cannot without a cost beyond the means of those who need it) be documented objectively.

As far as the shift from welfare to disability - in general, welfare was not ever the means of support most of the folks who have shifted should have been receiving in the first place. They were there because it was so challenging to qualify for disability benefits, and defaulted to the welfare system. When welfare funding was cut, and limits placed on time on the program, many are now trying (some with state assistance) to get assistance from the proper source now to jump through the bureaucratic hoops to qualify for the program they should have been on in the first place.

A number of the people I know with my daughter's disease have applied for, and been rejected for disability benefits. Her prognosis, at the time of her diagnosis with primary sclerosing cholangitis 4 years ago, was 10 years to death or transplant. That same endpoint is now 18 years due to a change in testing which results in earlier diagnosis. These are the kinds of people who "choose" in NPR's words the lifestyle of disability benefits - the ones we should throw away in favor of providing more funding for education - a service already available at no cost to everyone in this country. or parks - both of which are important, but they are not the difference between life and death.

Akoto

(4,261 posts)
66. How exactly do you want disability spending to be 'moderated?'
Tue Apr 2, 2013, 10:55 PM
Apr 2013

As it is, we're already living well below poverty levels, especially if we're on SSI.

 

mike978

(68 posts)
75. The growth moderated
Wed Apr 3, 2013, 12:43 PM
Apr 2013

as I don`t think a doubling every 15 years (roughly 6% growth per year) is sustainable and it will crowd out other spending. So don`t take my comments and try and suggest I want people thrown off benefit or something like that. Merely lets look at the system now, which no-one thinks is optimal, and how can it work better going forward. Do we really think in a society that is on balance healthier (less smoking, safer workplaces etc) we should be seeing 6% more people disabled EVERY year?

 

Voice for Peace

(13,141 posts)
38. K&R!
Tue Apr 2, 2013, 11:16 AM
Apr 2013

Great post, thank you -- am also of the 'invisible disability' and applying for SSI. One rejection so far, appeal in the works. I just don't know what else to do.

Even if I felt able to find and keep a job, there is no living wage. It's ridiculous.

One_Life_To_Give

(6,036 posts)
39. Share with your Congressperson anyways
Tue Apr 2, 2013, 11:20 AM
Apr 2013

First

My wife has had multiple lower back surgeries with resulting scar tissue in and around the facit joints. And now has developed moderate to severe Rheumatoid Arthritis. So I have some understanding of what you must deal with.

Don't underestimate the power of telling your story to even the most hardened individual. It's much harder to look people in the face and pretend they don't exist.

riverbendviewgal

(4,251 posts)
41. i am so sorry you have so much pain.
Tue Apr 2, 2013, 11:55 AM
Apr 2013

I am so glad your disability is recognized. I know that sometimes disabilities are not seen.

My disability is being all deaf in my right near and half deaf in the left ear. I got a hearing aid at 30 and found the difference in hearing astounding. I have experienced being made fun of and treated like I was stupid.

Your disability is far worse than mine. I hope someday there will be a cure for you.

Malone

(39 posts)
45. I have a more obvious disability
Tue Apr 2, 2013, 12:46 PM
Apr 2013

I broke my neck in a car accident when I was 19 and am a quadriplegic. I was on SSI for a while at first but I had to get off eventually because it is impossible to live that way. It was less than $710 back then and it was insanely frustrating trying to make it on that.

I was lucky enough to still go to college and I'm now a registered Architect and doing ok. I don't begrudge anyone on SSI/SSDI because I know it's not that easy, and if someone wants to go through all the trouble to live like that they can have it.

Most of the other wheelchair bound people I know have jobs and go to work everyday because with all the extra costs we have it's just not possible to stay on SSI. You sacrifice your health and longevity to have a decent quality life for the shorter term. I use most of my vacation/sick time on surgeries and recovery which has turned into a yearly thing. The main thing with me was the medical insurance because the Medicaid that comes with SSI wasn't good enough so I had to get a job just for the good private insurance.


(On a side note, "mangled" wasn't a very politically correct thing to say, but I get the point you were trying to make about it being obvious)

 

otohara

(24,135 posts)
51. A Lifetime of Hiding My Disability
Tue Apr 2, 2013, 01:51 PM
Apr 2013

Not too many people have seen my brace...I've been hiding it ever since I can remember.

The phrase I used to hear a lot was: I never would have known, you handle it so well.

Ummm....no not really, it's been a source of pain, embarrassment, rejection, and discrimination.

I am so effing grateful I was able to work for as long as I did. SSDI saved my body and my mind and yet even my doctor was
whining before the election about those who don't pay taxes ... get government asst. etc.... I said, you're talking about me.
Oh no, he said... you deserve it.

Stupid young doctor


WCGreen

(45,558 posts)
52. I feel guilty at how fast I was granted disability under SSI...
Tue Apr 2, 2013, 02:01 PM
Apr 2013

A few test, a passionate doctor, and a fair office got my disability okayed within two or three months.

I've heard of these long slogs and I am grateful for how fast it came for me. I also have to try to survive on $650 a month, which would impossible for me.

Hang in there.

mwooldri

(10,291 posts)
54. I thank you for sharing this.
Tue Apr 2, 2013, 02:45 PM
Apr 2013

I guess I am one of the lucky ones. My "disability" is invisible too. My diagnoses are bipolar disorder, general anxiety disorder and attention deficit disorder. I work for a great company that does offer short term disability, and for the past several years I have been on and off the job. FMLA goes so far. I am usually good at my job though it doesn't fulfill me as i would like. I want to get better though at this stage I don't know if I can. The idea of filing for SSDI had crossed my mind but I really have to keep on plugging on because it isn't just me. My eldest son also has an invisible disability that only becomes visible if he doesn't use the bathroom as frequently as he should. His diagnosis is bladder exstrophy and at age 10 he is still incontinent. He is needing surgical help with that, and then attention could be turned toward the "manhood deportment". The insurance I get at work is pretty good and without that I don't know how he could have had all the treatment that he has had. We are always hoping that the next surgery he will be dry, and that I don't have to wash bedlinen every day - also that he doesn't have to go to the restroom every 90-120 minutes. That he doesn't have to wear the "ultra absorbent" incontinence pads all the time. That he doesn't have to explain to everyone in class when the contract nurse assigned to him takes him out of class so often. It also comes with a fair deal of bullying and his classroom peers bringing up enough gossip about how "gross" he is... that he says he is always picked last for team sports in PE. That he doesn't have any real friends and yes the docs are saying that now he has clinical depression. Yet another "wonderful" internal disability. Add to this that he has now been diagnosed with hearing loss and he will have hearing aids soon. He has a hard time writing. He has recently been referred to a geneticist to see if his conditions are genetic. We won't know that news for a few weeks or months yet.

So our family has a number of "defects". I wouldn't want it any other way because I believe God doesn't make defects - we are in His image. Yes it is a challenge but we will make it and try to make this world a better place.

Sirveri

(4,517 posts)
56. You have the same condition as a friend of mine.
Tue Apr 2, 2013, 03:39 PM
Apr 2013

It sucks, has to carry a donut with him, can't travel more than 50 miles, can't go out to events because he has to leave half way through half the time.

Akoto

(4,261 posts)
59. Ah, yes. The cushion. My constant companion.
Tue Apr 2, 2013, 05:43 PM
Apr 2013

I bought a specialized one for $100 which works much better than the donuts did. It folds up with a handle in the center, too, so you can carry it without it being so obvious.

I never g out to any occasions, and as for travel ... Well, I go to Miami for pain management tomorrow. Two hour trip getting there. Even with my dad driving and me laying down, it's rough. Strikes terror in my heart when that date comes every six months.

As bad as it is, though, I find things to do and reasons to keep on going. I've mow learned at my young age to take great pleasure in small victories.

Rider3

(919 posts)
58. So true
Tue Apr 2, 2013, 05:01 PM
Apr 2013

You never know what a person is dealing with. They may look well, but they may be sicker than you can imagine. I wish the writer of this post the best of luck in health and in life.

Kalidurga

(14,177 posts)
61. Chronic Fatigue...
Tue Apr 2, 2013, 06:35 PM
Apr 2013

Post traumatic stress, at least two sleep disorders, joint pain, abdominal pain (kidney area), hypertension, spiking blood glucose levels (won't find out til Monday if it's diabetes), tightness in my chest makes it harder to breath.

Yet, I probably still won't get a disability claim approved. Why, because I worked for 10 years with a lot of that going on and I completed my degree finally. But, right now I couldn't work to save my life. I am exhausted most days just from preparing my meals and other life essentials. I would have also mentioned loss of appetite, but I manage to eat 3 meals a day I just don't feel like it. No worries though I got pounds and pounds to go before that becomes an issue.

You can't tell from looking at me though. I am glad. I really wouldn't want people to know I have sleep disorders. It is embarrassing to not be able to do something that is so easy for everyone else. Also the anxiety is embarrassing I don't even know what I am anxious about and I can't say that it's this thought or that one that is driving it. It's something so far out of my awareness, yet I feel the stress, my body is reacting to the stress. Anyway, my list of symptoms plus my weight is just very shameful to me.

The worst part for me is that I didn't cause any of it. I didn't chose to be malnourished, neglected and abused as a child. I didn't choose to have sleep disorders. I didn't get a post trauma reaction to an event, I got it from daily events up until I was well into my 30's. I would say that I didn't chose to be overweight, but that was one area I had a bit more control over, but it's very difficult when you aren't getting enough sleep. I would like to say that I am losing weight from a great effort, but not so much I have changed my eating habits in an attempt to deal with some of the symptoms I have and it's working to a degree, but I am still left with overwhelming fatigue and I am pretty sure what I am eating is what is driving my appetite down so it's not like I suddenly found some fountain of will power to deal with hunger.

Sorry for the rambling, but today is a high brain fog day and I am still dealing with anger issues from all the carp from RW hate radio to those that pretend to be allies but spur the debate to point fingers at people filing claims. I am tired of people thinking that this has something to do with being lazy. For all I know I have gotten worse because I pushed myself to work for more than a decade after the first symptoms started appearing for some of my problems.

In my case there are just too many suspects for me to say what has caused my multitude of problems. It might be mostly because of my childhood. It could be the stress from stuff that happened to me and around me as an adult. It could be some kind of allergy or a protein deficiency (I am really bad at getting enough in a day for months at a time). It could have been a virus or an injury. It could all just be from not getting enough sleep and I am tired of that too, people thinking well just get more sleep. Yep rambling again, I hope the fog clears soon.

undergroundpanther

(11,925 posts)
64. Invisible..
Tue Apr 2, 2013, 09:17 PM
Apr 2013

I got on ssi when I was 18.Got approved when I was three years in psych hospital. I have a list of disabilities,PTSD,Dissociative Dis.Depression ADHD,neuropathy,degenerative disc disease,pain,..my life has been alot of pain.

but to look at me I look 25,but I am 47,and wear a mowhawk,and look very different. but really I have nothing in my life,so why not be art?,Shit I,can't feel my own emotions anymore. Last time I felt anything I wrote a suicide note .And that isn't sarcasm.

I wonder what I could have been like if I grew up in a healthy family,a fortunate family, a school that didn't try to erase me,had people that cared and protected me..and stood by me,and encouraged me and let me become???

Sometimes the world just wants to destroy my soul it seems.

If I didn't get ssi and medicaid I guarantee you I would have been in a grave decades ago.

I used to have dreams, but you can't have dreams happen on ssi,everything is too expensive. One dream was to learn jewelry making,casting metals, those classes were $150 a pop and I had no transport to get to the place.Another dream was neon signmaking,a week long class,and you leave with all the tools you need, it cost 5,000.There was no way in hell I could afford that, I would have loved to go to Egypt before I die,but that one is so out of reach..one after another my dreams have been killed by $$$ and so why dream?.

Now I feel so little,desire..motivation has left me.I dunno what to do about it or why it's like this. It feels like my heart ,spirit,or whatever it was has died.

JDPriestly

(57,936 posts)
67. I wish you well, but I have some questions.
Wed Apr 3, 2013, 03:40 AM
Apr 2013

If you don't want to answer, I will understand and not be surprised.

I know from talking to a doctor who deals with a lot of people who are genuinely in pain and also a lot who appear to be drug-seekers that our medicine can do little to help people with chronic pain other than to deny that it exists or simply sadly admit that they cannot help. (How the doctor reacts depends on the degree of his compassion and empathy.)

But, then I notice people including a lot of people who live very long lives who should be in pain but don't seem to feel it.

I wonder whether sometimes pain is actually due to a body or maybe even a psyche that notices or senses pain more than the bodies of those who have less pain.

I am wondering whether you tried alternative pain solutions like acupuncture or some of the Chinese herbs and exercise disciplines or maybe yoga. I'm not asking because I think you should try these. I just would like to know whether, if you tried one or more of these alternatives, they helped at all.

Do you think that maybe your nervous system is just sort of more sensitive to pain that others? Or is your injury due to a serious incident like an accident or illness?

I'm puzzled because I notice that several people in my family who grew to be very old had serious physical problems that should have been very painful but weren't yet, as you explain, many people including some of my good friends, have constant acute pain without that much of a reason for it. What do you think? Could there really perhaps be a difference in sensitivity to pain born into different people?

Please don't think I am suggesting that you are malingering. That is not at all the focus of my questions.

Akoto

(4,261 posts)
71. You're asking for answers way above my head, truthfully.
Wed Apr 3, 2013, 10:19 AM
Apr 2013

Do I believe some people are born with better pain coping mechanisms than others, or more sensitive to pain than others? Sure, I think that could be possible.

In my case, though, we know that there is a physical issue going on. By accessing my pelvic floor muscles (I'll spare you the gruesome details), chronic spasm is readily detected. It's like the bowl of muscle within your skeletal pelvic is clenched into a constant fist. That's my form of CPPS/PFD, but there are actually several. It's a very strange syndrome, and that has made it difficult to find a cure.

In addition to my pain medication, which I have no problems with taking, I also go to a psychiatrist who prescribes Valium and teaches me some relaxation techniques. Always tends to help.

Perhaps the best assistance after that is true, deep distraction. I'm a gamer, so if I really get into a game (or perhaps a good book or something) my mind will focus less upon the pain. To some extent, that means literally living in fantasy, but I'll do what works.

OnionPatch

(6,169 posts)
70. You make a great point that the disabled don't always appear that way.
Wed Apr 3, 2013, 09:52 AM
Apr 2013

I don't know how many people I've heard saying something derogatory about a person they've learned was collecting disability because that person didn't appear to be disabled. I personally know how ridiculous that assertion is. I suffer from numerous issues; migraines up to twice a week, a degenerated disc, arthritis, TMJ disorder and a different painful condition in each of my feet. Outwardly I look like a perfectly healthy person. But I'm usually in some level of pain every single day. And yes, I try hard not to look like it.

I'm not officially "disabled" as in collecting any type of benefit. I can still carry on and work full time though some days it feels like torture just to get out of bed. I can't imagine being truly disabled (and it sounds like you are and having people try to shame you for receiving help.

Hope things improve for you.

Akoto

(4,261 posts)
78. I know how you feel, in a way.
Wed Apr 3, 2013, 06:58 PM
Apr 2013

My pain is always pelvic, but every day, the location and sensations change. Went to pain management today and was pretty much told to comtinue meds, as the cure just isn't there.

If your condition is so bad that you have difficulty getting out of bed, you should try applying. With a lawyer and the backing of a good doctor, the fight can be won, even if it takes years.

OnionPatch

(6,169 posts)
79. No, it's not that bad.
Wed Apr 3, 2013, 11:41 PM
Apr 2013

I only get that way sometimes. I usually can manage ok. But who knows how things will progress. I may not be able to hold out until 67.

Akoto

(4,261 posts)
82. I'd try to not think that way. The mind has such a powerful influence.
Thu Apr 4, 2013, 11:07 AM
Apr 2013

This started for me at seventeen, and I'm now twenty-eight. Every time I flare up, it feels like it's worse than the last, but that's just perception lying to me. It's usually not worse.

I've had to come to terms with my condition, and part of that has been living for today and letting tomorrow be what it will. What's the sense in worrying about the future when you can't change it, right?

In the early days, when I obsessively read everywhere looking for the silver bullet, I discovered that people with chronic pain like mine have shorter lifespans. The body just buckles under the stress. What's the good in knowing that? If anything, it motivated me to simply make better use of the time I have before I really am crippled.

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