Applying for Disability with Lupus

Hey, come on in. Nice to meet you. I'm so glad you came. Let's move over here. Oh, wow. Look who's here.

Lisa, I know that you're on Social Security disability, and I know that process can be a bit daunting.

It was an absolute nightmare. That's about the only thing I can say about it.

And I'm sure so many people are feeling that, and that's why we brought Winnie here, Winnie Pannell. She's a Social Security disability specialist. How can we maybe empower our audience with some skills to make our claim go easier or better? What can we do?

I think the first thing to do is when you go to the physician, take a note. Sign it Christine. Sign it Lisa. Date it, and explain what's going on. I've been running a fever. I have severe fatigue. I've had involuntary weight loss. I can't sit long. I can't stand long. My fingers don't work on the computer.

CHRISTINE MISERANDINO: So keeping notes--

That's right.

CHRISTINE MISERANDINO: --and keeping a journal even.

And put it in the doctor's files, say would you please keep it? Because at some point, if your physician is asked, how is Lisa functioning? How is Christine? If they don't have a clue, they're going to say, I can't respond to this. I don't know.

OK.

They may not understand that you have lupus brain fog, and that is sometimes you don't concentrate. You make mistakes at work. They may not understand that you are an unreliable employee. Why? Because your lupus is unpredictable. You may be there three days one week, five days the next. You never--

Miss some weeks altogether.

--know with lupus.

Right.

WINNIE PANNELL: And the other thing in terms of the physician, they're very busy. And so oftentimes, they'll just write back and say, oh, my patient is 100% disabled and can't work. And of course, Social Security will throw that in the trash can. That tells them nothing.

CHRISTINE MISERANDINO: One sentence is not enough. Well, there you go

And it's a very short turnaround period, I found out. Sometimes they'd only give you 10 days from receipt of the letter to respond.

If you need an extension, ask Social Security, because what physician can write your diagnosis, the clinical findings, the objective findings, your subjective complaints, your treatments, your side effects, your medication. Wh wh wh wh whoa.

And your function in two days, if you can ever get them to.

Right.

I totally agree. To me, documentation was the key. I took it upon myself to copy everything-- the notes, the lab results, x-rays, everything, and I sent it in with my initial application. I did get approved the first time, thank the lord. And the case worker said, I'm really glad you sent those records in, because when we submitted requests for all your doctors in the hospitals, none of them sent anything in. She said, you would have been denied.

Wow.

So now what can I do to maybe speed up the process or to make the process go as smoothly as possible?

You first apply for Social Security. More than 85% of people are denied when they apply.

So we should expect that and not take that personally.

That's right. And you should appeal, and you should appeal on time, or you will lose your claim. So then you go back into reconsideration. Over 80% of the people are denied the second go around.

Oh, really?

WINNIE PANNELL: One of the biggest mistakes is people just feel defeated right off the bat when they're turned down, and so they drop their claim, which means eventually that they will reapply, and they may lose some benefits. They may lose all of their benefits, because they wait until after their insured status has expired. Now where does that leave you? You have an option to go to a hearing before an administrative law judge. And I'll say right now, you don't go to a hearing before an administrative law judge without an attorney, because that is where most claims are won, particularly if you have lupus.

Gotcha.

OK. You could be looking at a year or more before you're even able to request a hearing.

That's a long time.

It's a very long time. What do you do?

Here's one of the problems. When Social Security asks a claimant, who are your doctors, and you fill out the paperwork and so forth, most people start with the doctors they're treating with now. Well, you both know you may have been through five or six years of physicians, half of whom didn't even know what was going on with you. Right?

Right.

Right.

CHRISTINE MISERANDINO: Definitely.

OK. All of those records are important. You don't just wake up and say, I'm disabled. So an attorney at that second stage oftentimes can look at the claim and say, wait a minute. This file is totally inadequate.

OK.

We want to show five years of struggle with this disease, and you've worked the whole time. Don't forget this. Your rabbi or your minister, your priest, your parents, your husband, your friends-- all of these people know pretty well what's going on with you. Those sources can be used.

Really?

You bet. Get an affidavit from your parent or from your minister.

CHRISTINE MISERANDINO: Because that goes towards the social aspect that you were speaking about?

That's right.

OK.

Let's say that you planned a birthday party for your five-year-old, and guess what. You don't go. And that could be evidence to show an administrative law judge, well, for heaven's sakes. What mother doesn't go to her five-year-old's birthday party?

So maybe--

She's obviously sick.

LISA PITTARELLI: --the lupus patients that haven't been able to afford to go to the doctor, they could use all of these avenues.

Absolutely. Lisa, that's a very good point.

CHRISTINE MISERANDINO: And as far as getting a representative or getting an attorney, Winnie? I cannot afford these things, and I am scared.

Well--

CHRISTINE MISERANDINO: I am scared, and I do not have money. How do I do this?

That is an excellent question, and most people who apply for disability don't have the money. And Social Security has structured it so that the attorney is not entitled to any attorney's fees, unless number one, there's a contract, number two, social security approves it, number three, the claim is won, and then the fees are limited to 25% of the past due benefits with a statutory cap. And right now, that statutory cap sits at $6,000.

CHRISTINE MISERANDINO: So the most that they can get is $6,000.

That's the maximum?

That's right. I mean how else could a person who's disabled pay for an attorney? This is a specialty. You need to find an attorney who knows Social Security disability. There is a national organization, NOSSCR. That's National Organization of Social Security Claimant's Representatives.

Oh, wow.

They have a referral service nationwide, and the number is 1-800-431-2804. And it'd be helpful if they understand lupus, because lupus is not just like any other claim. It's very complicated.

It is complicated.

So it's just a long process that we need to prepare ourselves for.

We have to be warrior women.

Warrior women.

Yes.

CHRISTINE MISERANDINO: I like that.

That's a good thing to have.

Thank you.

Thank you.