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Dealing with Social Security disability benefits

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I'm curious how many of you have gone through the nightmare of trying to collect Social Security disability benefits, and if you were successful without hiring a disability attorney. I'm still overwhelmed at all the paperwork that was involved, the numerous phone calls, the misinformation given to me by the idiots who work at SSA, the list goes on. If it weren't for a cousin who is an insurance broker and helped me with everything, I think I would have either just given up or hired an attorney. I will start receiving my disability payments in August, but I won't heave a sigh of relief until that money is actually in my (now nearly non-existent) bank account. I also have the misfortune of having to deal with an incredibly ignorant case manager. Once you're approved, you apparently deal with a caseworker from a local SSA office where you live. Lucky me got stuck with the nastiest person I've yet had to deal with (and she's the only person who handles accounts in my town). The first time we spoke, she actually hung up on me. The second time we spoke, she accused me of lying about some information I'd provided. The third time, when I was trying to explain more about my medical situation, she actually interrupted me to say, "Look, I don't really care." I was aghast. The last time we spoke, she told me "I gave you this information once already. I'm not giving it to you again." I called to speak to the regional manager to complain, and sent him a letter, but he never responded. Then my insurance broker cousin got involved and went to the office himself and long story short, I got a very nice phone call from the director herself who apologized and told me that from now on, any questions or concerns I have, to call and speak with her directly instead, that she'll "run interference" as much and as often as she can. Bless this woman. But I'm still stunned by the behavior of the so-called case manager. She's got to be one of the most unprofessional, ignorant, rude, and unsympathetic people I've ever had the misfortune to deal with. If I'd have had a crystal ball before all this started, I'd have recorded every conversation and then uploaded the recordings, along with this woman's name, to youtube. I'm still tempted to write a letter to my local newspaper about this woman's behavior, but it's unlikely they'd print it with the case manager's name, and I want everyone to know about this woman.

So I'm curious about others' experiences with SSA. Did you have to jump through hoops to get benefits, have to deal with really awful people?

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Well I can tell you my story but it will be different as healtcare here in Canada is run very differentally from the US. I have signed up for disability pension and it is certainly a long wait, but fortunately there were other programs to help pad the blow. I was accepted into trillium pretty quickly and that now pays for all my drug costs, including tpn. In addition to this, I'm pretty sure hospital stays and such essential items are already covered by being a citizen of Canada. It hasn't been cheap but its been bearable. I really hope that you guys down in the US see some real change in your healthcare with Obama.

No, I was pretty lucky. I applied online, had a friend drop information off to the local office, and never hired a lawyer or showed up anywhere myself. I was approved right away, probably due to so many medical problems. It does take some time for the money to show up in your account once you are approved. I guess I was lucky, but then again, if I was truly lucky, I would still be working and would not need disability!

Mimi

I think a better solution for me would be to marry a cute Canadian guy and move up north.

i had no problem. my drs filled out all the forms with me, and we sent in the packet. i was approved in about a month. drs also wrote letters explaining exactly what was wrong and the prognosis of growing my intestines back!

First off, CONGRATS on winning! I got turned down the first time so I had to hire a lawyer(well known law firm). They handled all the paperwork and phone calls, but I had to keep on them constantly. My case changed hands many times so I had to talk to many different people. I had to go before a judge. They sent me some newbie lawyer who knew nothing about my case or my illness. The lawyer never said anything in front of the judge. I did all the talking. Luckily, I had enough documentation that I was approved. The lawyer got over 4 thousand but at least I was approved and I knew they would not get a dime unless I won. So I had no out of pocket expenses. They said my case would be reviewed in 4 years (2008) but I have not heard from social security. I wonder though if one day they will decide to challenge my illness again and I will stop getting it.

I had no problems with Social Security Disability. I had to go for an exam by one of their Physicians who happened to be a retired Family Physician from Canada. It has been 4 yrs now, and have not had any communication from then.....Hope i don't jinx myself....

yes ssd can be hard to get my insurance company hired one of those companys that get it for u i've been on it for 20 years.

bluangl77, yes your lawyer got 4k out of your pocket. :0)

I'm trying to get disability now. I received my rejection letter a few weeks ago and went online to file the appeal, got the confirmation letter and now have to wait for a date to appear before a judge. I'm told this could take up to a year! I went online to look for a lawyer, filled out one of their forms for info and never heard back. Guess I should try again or someone else.
I was told that since I did secretarial work there was no reason I couldn't continue. FInd me an employer who doesn't mind you missing 3-4 days a week, leaving early because you feel so lousy, or taking days off to see doctors, (and still pays a decent wage) and I'll give it a try. Wouldn't do well taking dictation right now because the pain has a tendency to make me curl into myself when it hits hard (I'm not driving for that same reason so I'd also need a way to get to work!).
Well, it's all a waiting game now.
I hope you have much better luck!!!

Mimi,

Even my GI Joe was surprised that I wasn't denied the first time around, but that was probably because I have close to zero intestines (just a duodenum, about 3 inches of jejunum, literally just enough jejunum for a J tube, and about 10 inches of colon unconnected to anything) -- only 1 foot total left -- and because of my blood clot issue. But it was after I got approved that all the problems started. In the material SSA sent me was a booklet about working while on disability. I had a long, thorough conversation with a guy at SSA to find out if I could work, how many hours, how much could I make, etc. (I used to be in business for myself; medical publishing. I wanted to still be able to take on an occasional freelance project now and again just so I don't go stark raving mad doing nothing but staring at the ceiling day after day and because my disability payments might not quite be enough.) So I contacted an old client, they gave me a project, I notified SSA, and two days later I get a letter saying they are rescinding my disability because I have "gainful employment." What????? One three-month-long project equals gainful employment? I was never told at any point that I had to wait until I started collecting disability payments before I could try this 'work' program. Had that been the case, I would never have taken on the project nor would I have called SSA to let them know that, know what I mean? So that's when I started getting involved with this horrific woman at my local SSA office. I tried to keep my cool but when she accused me of lying, I felt my blood pressure rise. I was like, you guys supposedly record every conversation. That being the case, you can listen to the conversation I had with the first gentleman, heck, all the conversations I had with SSA, as proof that I was never told about a waiting period and nor did I ever lie about anything. So that took about 8 weeks to clear up, and the intervention of my cousin. But I still won't rest easy until I get that first payment. And I'm not going to ever again try and work; it's not worth the risk of possibly losing my disability. It just burns. I know of so many people who abuse the system, and here I try and do the right thing, worked all my life until this happened and have paid into the system, and it all almost blew up in my face. So never again.

"I was told that since I did secretarial work there was no reason I couldn't continue."

When I had an intake interview at my local medical aid (welfare) office, my case manager warned me I might be denied. She said she had a client with a brain tumor, who is terminal, but was denied because he was told he could get a job as, say, a telemarketer. But another client of hers, a heroin addict, got approved immediately. So did another client, a pregnant unwed 16 year old girl. Sometimes I wonder if SSA just arbitrarily approves/disapproves people. Or they deny you the first time hoping you'll feel so overwhelmed you'll stop trying. God, I despise the U.S. medical system (and we're supposed to have one of the 'best' ??? yeah, right). I just hope Obama can deliver on his campaign promise in this regard. I know he can't do it alone, that Congress has to approve any legislation, so I'm not holding my breath on this.

Woeful:

My gosh, you certainly went through a lot of hassle with SSD! I'm sorry you had to go through all of that. You tried to do the right thing by informing them of this temporary job and they screwed you! I agree that sometimes it seems like they arbitrarily approve or disapprove people. I guess it is all about who reviews your case. Some people are given such a hard time when they don't deserve it. Good luck with this - I pray your first payment comes soon!

Mimi

Mimi,

Thanks. Yeah, it's just been crazy. (And I won't even get into the problems I had with MHIP - which is a Maryland state-funded health insurance program for people coming off Cobra who are uninsurable. I think they make it a point to hire people with limited intellect, lol). I just thank God every day for my cousin the insurance broker. I would have been well and truly lost without him. As it is, my local aid office can't help me because they said I'll be "collecting too much disability" payments. What??? I'm being penalized for having made good money all my life until this point and having paid INTO the system? It's absurd. Never mind the fact that since when is $1560 a month "too much" money? My health insurance is around $800 a month, my scripts around $400 a month, my car payment is $240 a month. That leaves me with about $150 left over every month, and out of that I have to pay for all the other medical supplies -- saline solution, gauze, dressing pads, surgical tape, copays when I see my doctor, etc. Even if I were able to live independently, I couldn't afford rent or a mortgage unless I moved into a treehouse. It's crazy. And scary. It's almost a 'good' thing that I can't eat food; I certainly can't afford to buy groceries, lol.

I know - I agree with you. I would never be able to afford to live in NYC like I used to. Thank goodness my dad has me living with him! Yes, maybe I could afford a treehouse too, but then I would have to live someplace warm all year round! Despite paying enormous co-pays, I guess I feel blessed to have health insurance through my old job. They keep employees who are on disability on the same insurance plans they had. Otherwise what would I do for the 2 years I would have to wait for Medicare?

Mimi

I was laid off work in Dec 08, as I missed so many day's being sick, my doctor put me on State Disability and I filed for SSA disabilty, have to say the case worker was real nice, but I was denied, here is the reason.

Though you may be sad or anxious at times (I don't know where they got this), your records show that you are able to think, communicate and act in your own intrest, though you do have discomfor due to migraine headdaches, joint pains IBS and Gulf War Syndrome your condition can be controlled by medicine (duh it makes you sleep, can't drive, can't operate machines etc, not to mention it makes you vomit) you may have some discomfort, therefore we have determined that you condition is not severe enough to keep you from working, we realize that you cannot do your past work, but you should be able to work at some jobs which are not difficult to learn and remember. I have a really good memory, but I suffer from migraines that have you laid out even on meds at least 2 times a week. My previous work was on a computer. I have contacted an attorney and am waiting to hear from them, I also filed for VA disabiltiy back in Dec 07 and was denied, already had a hearing as everything was documented in my military medical records. I think that I have to just keep trying and finally I will be granted the benefits. But if anyone has words of wisdom please I would love the help.

Thanks

I hear you on the SSI issue and the Medicaid stuff as well. You do realize though that these programs have nothing to do with the medical care here in the US? Our medical care is totally awesome here and I'm afraid of the "changes" that are coming. How many of us here would be deemed too sick to be worthy of care in other countries with rationing in place for healthcare?

The programs mentioned above are sick and they do need help; but I hope we don't confuse medical care with the social programs involved in helping us. I, for one, am grateful every day that I have the care I do have with the best doctors out there.

Lynee

Lynee,

Not to get into a political debate, but I'm hopeful that whatever changes are coming will be good ones (I know, I'm probably being totally naive). But SOMETHING has got to be done. Everyone should have affordable access to quality care, and I think there should be a public plan option. (I'm not saying all people should have to carry insurance, but insurance should be available to anyone who wants it/needs it.) That may make the private insurers stop their shenanigans (sky-high premiums, denying people based on preexisting conditions, denying procedures, etc.). I think we've been totally screwed over by the system in general -- by the medical system (because of inefficiencies and being 'for profit'), the insurance companies, big pharma, and lobbyists.

As for being deemed too sick or having rationed care in other countries, I think a lot of that is myth created by certain politicians/political parties and by people who've never lived in another country. I've had emergency medical treatment over the years all over the place, including Ireland and Canada, and I have no complaints about the care I received (the worst care I received, actually, was in 1987 in California, at Kaiser Permanente). I have a few British friends who are very content with their system, never experienced the wait times I hear others talk about, whether or not it was an emergency situation. This one woman I used to correspond with years ago, who also has severe Crohn's, was in her 60s and constantly raved about the care she received and about her doctors. A former colleague of mine is British and his mother had Crohn's disease flare violently when she was in her early 40s. She was one of the first people to have had her colon removed and had an ileostomy. Michael said her care was "fabulous" (and since that time, her Crohn's never flared again, though this was 10 years ago and as we've lost touch, I have no idea how his mother is doing now. She was 60 years old at the time Michael and I worked together). I know of two other Brits, one who needed a hip replacement and got it in a timely fashion, and another who needed her appendix removed and it too was removed immediately. None of them ever said they'd prefer the U.S. system, where your access to care was dependent on being employed by a company that offered insurance, your overall state of health, or whether you could afford to pay for private insurance. So there's two sides to that issue. Sure, there are a lot of non-Americans unhappy with their healthcare system, but there are those equally happy with it. And care actually IS rationed in this country, to some extent. It's a complicated issue for sure. I just want our politicians to take their time and come up with a solution that benefits the most Americans, not themselves or their political party or lobbyists or corporations.

Sorry for your particular situation, but I highly want to assure you not ALL are like that and I disregard your jaded view.
I was a "Case Manager" and some of us actually have the knowledge and skills to do the job correctly. As in any job, you'll find some who care about the people behind the file and some who don't.. and believe me, the job is a lot harder than you can believe.

Before working for them, I got my degree in Voc. Rehab Counseling and have a CRC degreee. I spend many wonderful yrs working hands on, helping those with disabilities change their lives. I was a panel team member in DC & one of the orginal signers on the ADA in 1990. When I was employed by the state to evaluate SSDI/SSI claims, it was by far the most complicated legislation I encompassed. True, there were collegues who were apatheic about their jobs, but many actually do care about the person behind the file. The legislation is in large part, what makes the process so difficult.

After being diagnosed, I left that position and worked with an atty, writing appeals to the 11th circuit court for those who were denied at their state level. I had many overturned, some because of simple errors and or mistakes on the face of the record.

I also worked in the television industry and did an off-Broadway show in NYC highlighing the plight of those with disabilities. I have since produced several other shows.

I didn't write this to boast, I wrote this to explain that in order to be hired for a position to evaluation SSDI/SSI claims, you're not AN IDIOT. I don't know what type of employment you did, but I'm sure you would be offended if someone labeled YOU as such when I'm sure you put your heart and soul into your work.

Enjoy the benefits.

Certainly no offense taken Woeful! I have really good insurance, but I do understand how awful it is when you can't work and you can't get good coverage. The problems I see with the "new" healthcare proposals are that without the free market mentality many things just do not happen. Research isn't as extensive, new drugs aren't developed. There is a great deal of waste in our system, but I still think it's a better system of care than I've seen overseas. I've been in the hospital in England and it was awful (not to mention dirty - but that might have been a fluke as I've seen that here a time or two as well).

I wish they would concentrate their efforts into fixing the social program problems rather than trying to overhaul an overburdened system by an overburdened government. Recipe for disaster is how it shakes out for me. Just my humble opinion of course!

Lynee

"I didn't write this to boast, I wrote this to explain that in order to be hired for a position to evaluation SSDI/SSI claims, you're not AN IDIOT. I don't know what type of employment you did, but I'm sure you would be offended if someone labeled YOU as such when I'm sure you put your heart and soul into your work."

I didn't call all of the SSA case managers an idiot; I said that about the ones I've dealt with in Maryland, and about one woman in particular in my local office. It was a nightmare process from beginning to end. Being given the wrong information or conflicting information, being sent the wrong (or outdated) forms, leaving voice messages and never having my calls returned, etc. (And I'm not alone in that regard. As I mentioned, my cousin is an insurance broker and he deals with SSA all the time. He said what happened to me is "very typical" for my area.) (As for my profession, I used to be in medical publishing. And yes, there are quite a few idiots in that field too, as in any field. Just as in any field there are people who don't put their heart and soul into their job--it's just a paycheck, sadly. I don't personally take offense if someone calls my co-editors idiots because I know I was good at my job and they weren't talking about me in particular, just venting in general.) It's great that you do put your heart and soul into your job and realize it's an actual human being on the other end, struggling with both the complicated system and their illness/affliction. But sadly, the bad eggs are the ones we often remember and that often taint our view in general.


"I also worked in the television industry and did an off-Broadway show in NYC highlighing the plight of those with disabilities. I have since produced several other shows."

Shows/documentaries like that need to get more airtime on television. Sometimes shining a light in the corners reveals things most people never see or give a thought to.

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