17 replies to this topic

[barefut]

I should have studied harder I guess. There is even a helpful 'study guide' offered here on ISN in the form of a forum discussion. I was also caught off guard. It was like a pop quiz and my mind went blank. I stammered and babbled and said all the wrong things. Who knows though, maybe that will actually help me? If I am lucky, my interviewer will think, "This woman is an idiot. There's no way she could hold down a job."

I'm just sick about it. I can't even go into the details about it right now. I have not been officially denied yet but I will be. At first I thought I'd get a jump on things and start working on an appeal but I don't know. Maybe it's just not meant to be and I ought to instead work on accepting that. If I was receiving any child support or even had any hope that I ever would, it would be easier to accept. In fact, if I was receiving any child support I probably would have saved myself the headaches and not even filed a long term disability claim. I have learned to live quite frugally over the years.

One of my greatest fears though is losing my Medicaid coverage. If I am forced to go back to work outside my home, even part time, I could no longer be eligible for this assistance due to an increase in income. And because of preexisting condition exclusions, I will never again be eligible for any kind of health insurance plan through an employer or even as an individual if by some miracle I won the lottery. And since I can only even hope to be physically able to work outside my home, part time, at a sedentary job, I would not be eligible for any health insurance plan anyway since you have to work at least 32 hours a week to qualify.

My last card is Social Security Disability Income. I suppose I can look at this long term disability denial as the midterm and SSDI as the final exam and study harder next time. I'd better not wait too long or it might not even BE there TO apply FOR!

[Shelley Ensz]

Hi barefut,

Oh, I sure know how you feel! I've flunked every phone interview I've ever had, for anything. I am nearly always startled by the questions, feel a supreme attack of blank-mindedness, say the stupidest thing that comes to mind. I could prepare for hours and have a sensible response already figured out, but it goes flying right out the window (there is a very large, open window in my brain, I swear.)

You don't know for sure you've flunked until you've received the report card. Even if you just get a D-, it would still be enough to qualify you for disability as it is totally a pass/flunk thing, no in between score. And it's okay if you totally flunked as you can just take the class over again (appeal), if you want. The point of your disability interview is to see whether or not you can work full-time again. Many people still work part-time and get disability (since they changed the requirements). You're not working at all. And you're plenty for-real sick!

Now, if you laid claim to having completed an Iron Man competition last week, even coming in last, that would surely shoot you in the foot. So would confessing to that fabulous full time job that you don't have!

But you're not lying about not working, you're not lying about being sick (and sick on top of sick), and just because you are able to get out of bed in the morning does not mean that you are not disabled.

So, try to cut yourself some slack. And hang in there. Eventually everything will work out, just as it should.

[Margaret]

Hi Serena ,

You sound soooooooooo bummed and rightly so. I will keep you in my thoughts that you do get SSDI. How long before they let you know?

Take care, Everyone.
Margaret

[ladyhawke]

Hey Girl:
Don't count yourself out, even if you do get turned down....you make that appeal. You and people like you, are what the LTD is there for. When I first applied for it, I was told by the company, as well as my doctor and others that I would definately be turned down and that I would need to appeal. It was just taken for granted. Well, when the call came, I was fully prepared and had already accepted the fact that I "would" be turned down and I wasn't. I almost fell over. But yes, I would have appealed. Don't give up, this is one thing where, even though the body is weak, the spirit is strong.... let us know how things go. thoughts are with you.

[Jeannie McClelland]

Lots of people get turned down the first time, appeal and win, so don't give up! We're all rooting for you and keeping you in our thoughts. Hugs, did I mention hugs? Lots and lots of them!

[CraigR]

Based on my experience, I would recommend a lawyer - and don't be surprised if they turn down your appeal.

After being turned down the first time, I went to a lawyer who sent in the appeal, complete with citing the statute law concerning qualifying for disability for scleroderma (with multiple complications) and Sjogren's syndrome. Based on the the statute, I was more than doubly qualified. The appeal was again denied. The statute law was completely ignored. I was basically told that since I had two arms that worked, I was not disabled. Thus it seems that it must go to a judge.

According to the law, scleroderma with two systemic complications qualifies. I have had slow-onset (CREST) scleroderma for 33 years. With secondary Sjogren's, Raynaud's, Pulmonary hypertension, Peripheral neuropathy in feet, osteoporosis, complete hip replacement, frequent debilitating bouts with myalgia and anemia. Much of this was made worse by a bout with Burkitt's lymphoma several years ago, which included a stem cell transplant. I worked up until last July.

Needless to say, I am quite bitter with this process.

Craig

[Shelley Ensz]

Hi Craig,

I have heard that disability applications are backed up for two or three years in some states. You can be completely qualified for disability but still be postponed until a hearing; a general rule of thumb is that if you are not immediately approved, you will most likely have to wait through the appeals until you get a hearing. Obviously, we hear about people here who were immediately approved under the compassionate approval statute, but we also hear from those whose application somehow escaped immediate approval. You just need to keep on appealing until you get one. But don't be surprised if that takes nearly forever!

On the positive side, when you are approved, you will get a lot of back pay. On the negative side, your lawyer will get a big chunk of all that back pay, whereas if you were properly approved right away, before a lawyer had to become involved, it would all go to you. But as you've discovered, disability is not a do-it-yourself project because even with an experienced lawyer and even with all the facts on your side, you can still be denied until the administrative law judge hearing.

Never get so discouraged by the process that you drop your application or fail to immediately appeal the decision. A huge number of people fall into an abyss, neglect to file their appeal within 60 days and then need to start from scratch. Delays like that can very adversely affect the length of time until benefits are received, and in some cases disqualify them because of the number of recent work credits required to qualify in the first place. There are enough delays built into the system without adding any unnecessary ones; and it is absolutely critical for people who are disabled to keep the process going as there is still an a two-year wait for Medicare coverage during a spell where you may be completely uninsurable.

[alice1]

Barefoote...My doctor, a Ssc. specialists, told me to quite work and apply for disability. He said it would take a long time and I would receive a few denials but it would finally be approved. He was right, I was denied, got a lawyer and still denied, set a court date and got
a letter of approval one week before the date. I guess they were hoping I would drop the case.
All of this took about 2yrs. A hard wait but I liked the back pay but not getting the disability insurance cost.

Hang in there, it will go through...alice

[Snickerdoodle]

Hi, I don't think anybody mentioned this, but my thought is that it's best to go in with an advocate. There are many in the US, and some are a free service. I had an advocate in Florida who did an amazing job for me. And though he said that they usually turn your first request down, they didn't turn mine down. He was very surprised about that. Me too.

Hope it all works out for you.

[barefut]

Thank you, thank you, thank you all for your replies! Very encouraging and I needed that!

I will read and reread this thread whenever I need the boost!

I also may have questions for some of you later.

Take care all!

[Peggy]

This whole issue so burns me to no end. It was deemed by the Social Security Administration in 2008 that Scleroderma is to be considered a "compassionate allowance" disease in that if a person has the medical documentation of this disease and accompanying diseases that there application should be "fast tracked" for approval and due to the "compassionate allowance" should be approved right away.

So what is going on? I applied in November of 2008 (right when the compassionate allowance ruling happened). I brought this to the attention of the gentleman who did my phone interview and he sent this with my application and asked that it be fast tracked. He was so helpful during my phone interview he even went through my application and changed some things to make them better. I was then approved in December and received my first check in January of 2009. I had not worked since July of 2008 so I had already met my 6 month waiting period.

So what I am trying to say is this...............DO NOT GIVE UP! Make sure you bring to their attention that you do have a disease that is in their own classification of "compassionate allowance". Make sure your medical documentation really puts forth your inability to hold down a job due to all of the problems you have from this disease.

I so hate that you are having to go to a lawyer to do this and then have to share with them the earnings you have coming to you.

I will continue to keep all of you in my thoughts. This should not be happening to any of you!!!!

Warm hugs,
Peggy

[pieski]

Something about health insurance.
If you get a job that has group coverage, they can't turn you down due to preexisting conditions. I work at a hosptial. I work 24 hours a week and have full benefits. There are jobs out there that you can get with insurance.
If you can get a job, I would recommend it. It gets you out among people. A great boost for morale.

[Shelley Ensz]

Hi Barefut,

Have you heard anything official yet, as to whether or not you really flunked it or not?

And keep in mind, the way the system works is even if you did pass it, they still might keep denying the claim until it goes to an administrative hearing.

[barefut]

I just spoke to them a minute ago. It is in review with their Dr.'s. When it is denied I can appeal. In my interview I should have spoken more to my fatigue and muscle pain and weakness rather than my bowel issues.

She said she spoke "at length with my employer" and HR told her I had "childcare issues". Although that's true. What does that have to do with scleroderma and my disability? She's making it look like I quit because I couldn't find a babysitter. What a maddening process!

Thank you for asking,

[Jeannie McClelland]

Can HR even mention 'childcare issues' legally? Grump~ Well, start making a good long list for the appeal, Sweetie! We've all got our fingers virtually crossed for you!

Warm hugs,

[Lulu]

I can't give you any advice, but I will wish you luck.

[red]

Hi all, also sending my condolences in your hardships getting disability approvals! My doctors are also starting to encourage me to go on disability, but I'm very discouraged hearing your difficulties! I looked on the Social Security website but couldn't find scleroderma listed... Does anyone know where it is documented as a compassionate allowance? I did find sclero in the List of Impairments and it seems like I would qualify, but how does one "prove" they have severe fatigue, pain or malaise (which most us definitely have!!). Have plenty of GI tests to prove sclero involvement, with weight loss to back it up, and have documentation of bilateral carpal tunnel, shoulder arthritis, hip bursitis, goiter, asthma, and am going for pulmonary testing next week as I'm having increasing signs of lung problems....but, my goodness, Craig, if you've been denied, I certainly would be too!! And how do you all pay bills for 2 years while you're waiting for SS to come through!! Very discouraging.

red

[Sweet]

Hey Barefut!

I'm going to think very positively for you that this WILL workout.

Frankly, if you had the energy in you, which I'm sure you don't, you probably have a viable lawsuit against your HR department for bringing up the childcare issue - truly.