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Navigating SSI and SSDI Applications for Histio Disorders

Hi everyone! We hope you enjoyed all of the information we shared during Awareness Month!
Recently, we shared that compassionate allowances for SSDI benefit enrollment were expanded for those with histiocytic disorders. Shortly after, we sat down with Sandra Lamb and Jane Johnson, two experienced disability representatives, about how this makes the process easier, and for a crash course in applying for benefits in general. The discussion focused on the process for both adults and children. This first blogpost will cover the adult portion; we will have one out next month summarizing the children and disability questions.

The full episodes of the podcast with Sandra and Jane are available, but this blogpost is for those of you who prefer to read this information. We may later create a one sheet for each population with their help as well, so be on the lookout for that.

This will follow along with me, Sandra, and Jane in a Q&A format, summarizing the most important parts of the podcast episodes. Any part with “…” is just connecting two similar ideas for brevity and I include words in ( ) for words that are missing, in sentences that make sense when speaking, but may be confusing in text. You can of course still go listen to the full podcast episodes here if there is more you want to know.

Most of these questions were asked by the community, so you may get some answers to your own questions as well.

*Please note, this information is only applicable to the Social Security Administration of the United States, we have resources applicable to this in other countries in our Resource Directory, and we hope to keeping adding more*


Me: I’d love to start by first having you introduce yourselves so that the community can get to know you. Sandra, you have a personal connection to histio and have been connected to the Histiocytosis Association for some time. We’d love to have you tell us a little bit about yourself and your connection to histio and your background and career that has brought you here today to speak on this SSA Compassion Allowance List expansion.

Sandra Lamb: My name is Sandra Lamb. In 1994, my husband and I adopted a child who was born with histiocytosis, multi-system. She underwent chemotherapy, radiation, just about everything back then that was available.

She now is 30 years old. She’s doing very well. My husband and I got very involved with the Histiocytosis Association and my husband worked with Jeff Toughill, the founder, to create the first Histiocytosis Association website. I became the website host and kind of stepped into a role as the advocate between the researchers and the families and children to get information, to share support services that the Histiocytosis Association had created. And I did this for 10 years. During this time, I decided to apply my daughter for disability…I got my daughter approved. I decided that I wanted to go into private practice and become a disability representative and a patient advocate. So, I’ve been doing it ever since. That was probably 12 years ago. My daughter now has benefits. She has Medicaid and she has Medicare. She is set up with insurance basically for the rest of her life and she has some income.

Me: That’s amazing. Thank you so much for everything that you have and continue to do for not only the histiocytosis community, but for all those lives that you touch through your work….
I understand that you have worked with Jane for some time and Jane, you also have a similar passion as Sandra and your work and passion have helped so many in their journey to navigate social security. Would you mind, Jane, telling us a little bit more about yourself and your background that brought you here today?

Jane: My name is Jane Johnson. I am an EDPNA and a I have been helping clients get disability benefits for 14 years. My company, Foothills Disability Law has a staff of 12, including an attorney, a registered nurse, two retired social security claims reps, two paralegals, two people who are on disability, a medical records specialist and three case managers. So, we’ve become kind of a bigger company, but we pride ourselves in the fact that we take care of each individual case because every case with social security disability is different. Every case has twists and turns, both technically and medically, which we’ll talk about as we go on today. Two different criteria completely with social security, the technical requirements and the medical requirements.

Me: You both mentioned a little bit about this, but can you explain maybe a little more of what an EDPNA is and how you work with individuals seeking to navigate social security administration?

Sandra: I’ll start by saying an EDPNA is a direct pay disability representative that is non-legal. We can do pretty much anything that a lawyer can do except for district court. A disability representative kind of helps you complete the forms, get them submitted, can help get medical evidence, sometimes help summarize that, (it) depends on the disability rep, and present that to Social Security and then kind of do all the footwork in terms of following up and making sure Social Security is doing what they’re supposed to be doing…
The disability rep is paid contingent upon approval up to 25% of the back award. If someone wants to do it on their own, they can. If they want the help, then it’s no out of pocket cost. It comes from the back award. A lot of my experience has been that a lot of people who are ill and just kind of worn out by being so ill, they may want someone to help them, that they just don’t have the energy and inclination to take something like this on. It can be complicated. In order to become EDPNAs, we had to go through a kind of a rigorous certification process.

Jane: We had to take a great big test with Social Security and lawyers do not have to take that test. They can just jump in and learn as they go. So when we hit the road, we hit the road running, proving that we knew how to do this kind of work. As an EDPNA, Social Security treats us just like a lawyer, (we) have all the rights and we have all the responsibilities of an attorney representing a client, but only in front of social security. I can sometimes explain it to clients. It’s like being a PA or a nurse practitioner. We do everything the lawyers do. We just don’t have that degree, it’s a different degree.

Me: What is the compassionate allowances list? I mean, we were so excited when we saw this expansion. Why does the expansion to include more histiocytic disorders matter?

Sandra: The compassionate allowance list was created to expedite certain cases that were considered severe enough to. Now the histiocytic syndromes have been on the list quite a while, but in August of this year…social security has issued an expanded edited list for histiocytic syndromes. And they also have now included histiocytic malignancies. So, it is an expanded version of what was previously in place.

What that can mean is, basically expedited cases can be accomplished in weeks to months rather than months to years. It’s my understanding that these cases go to a special team which has the capacity to expedite an approval and that according to what I’m reading, some of these cases can be approved just on the diagnosis only. It means much faster results.

Jane: In terms of meeting the criteria, I assume you will put a link on your website that takes you to the criteria for it because it’s going to be very specific in terms of meeting the criteria. In terms of eligibility (for) social security,the requirements for disability are broken down into two areas, as I said before, technical requirements and medical requirements.

The compassionate allowance deals with the medical requirements, but before you can even get there, you have to pass the technical requirements to be eligible. There are two kinds of disability. One is called SSDI. It has Social Security Disability Insurance. It has a lot of other names, but we’re going to call it SSDI for today’s purposes. That is based on your work record. If an adult has worked at least five of the last 10 years, even if it was part-time, usually, then they’re going to be eligible for their disability insurance that they earned through their work and paid for through their Social Security taxes. If a person has not worked five of the last 10 years, then their insurance has probably expired and they’re no longer eligible for that.

Then they may be eligible for SSI, which is Supplemental Security Income. That is a needs-based program. To be eligible for SSI, you have to have very low family income and very low family resources. Resources are considered anything of value that you could sell for money, not included is one vehicle and the house you live in. Everything else that you could sell for money kind of counts as a resource. And for individuals, you cannot have more than $2,000 in resources. For a couple, you cannot have more than $3,000 in resources. The SSI regulations are very…there’s a lot of gray area.

As I understand it, there are 42 questions Social Security asks to determine if you’re eligible for SSDI. That’s how complicated it is. But a lot of times people talk about not being approved because they didn’t have enough work credits. And that’s because they had not worked at least five of the last 10 years. The eligibility is slightly different for people under 30. Under 30, you’ve barely had 10 years of work time. So, you don’t have to have quite as many quarters if you’re under 30. But all of this is all very complicated. Social Security can help you figure it out. A representative can help you figure it out. But even as a rep, I often call Social Security with my clients and say, help us understand where we are and what we’re eligible for to make sure that they have access to things I don’t and to make sure that we know where we are…. Sandra is talking about compassionate allowance. That’s all about the medical requirements. You could be absolutely eligible medically, but if we can’t meet these technical requirements, we can’t even apply.

Sandra: One of the definitions of disability is the inability to work above SGA: substantial gainful activity. If you are currently working above that number, then you’re not.

It’s the inability to work above SGA, which I believe in 2024 is $1,550 gross a month. It goes up every year. But if you’re already making that amount, they’re not going to consider you technically eligible.

Me: Now, I imagine this is also somewhat time sensitive. Is there a point in time where someone would no longer be eligible for Social Security? Meaning, is there an urgency to apply if this is something that those listening feel they might be in need of or eligible for?

Jane: Absolutely. Again, for SSDI, that insurance stops after five years. We see this a lot with a parent who quits working to take care of a child and thinks they’ll go back to work but gets sick and then they’re no longer eligible. We see it with caretakers for the elderly and think, well, I’ll go back to work, but then they get sick and then they’re not insured. And if you’re married, for SSI, the needs-based program, your spouse’s income counts against you. So, if you’re married and you’re no longer insured, there’s every chance that you are not technically eligible for any kind of disability. It is very hard to win a case if you wait five years to apply after you quit working because you don’t have contemporaneous evidence.

So the sooner after you quit working that you can apply, the better. Also, benefits are only payable for one year before the date you apply. So if you wait five years, you’ve lost four years of benefits because we can’t go back and get that money. For SSI or Supplemental Security Income, benefits are only payable from the first day of the month after you file the claim.

Me: It’s important for not only for people to really start the process, but it sounds like also having someone by your side to really help you navigate it would be imperative and beneficial. So how would someone go about applying if they’re starting from scratch?

Jane: You can file your own claim simply by calling Social Security. They’ll set up an appointment, they’ll take the information on the phone, and a claim will be filed. There are so many mistakes you can make right out of the gate.

The first is you may be eligible for both kinds of disability, and they may not take both cases. The second is there are technical reasons that you may be eligible for an earlier onset date that Social Security won’t fight for you. They’re going to look at the most obvious. A rep would go back and try to find the earliest onset date or the maximum benefit.

As a rep, it is much easier for us to do everything right from the beginning than to try to clean up the mistakes. A couple of things that are important to know. Not all representatives will take claims at the application level. Some require you to do that to get denied once, even twice before they’ll take a claim.

Sandra and I both agree that is absolutely not the way to go. You need help from the beginning. You need to know the answers to all the gray areas from the beginning. The second thing to know is there’s never a charge for a disability case unless you win. And that’s set by Social Security law. And if you do win, we’re allowed to charge 25% of the back pay, which Social Security pays us directly.

The third thing is that Social Security itself says that a person is 33% more likely to win a claim if they have representation. All of that said, there are also times when you will talk with a rep and the rep will say to you, we’ve done this much and this is what we know and here’s the information you need, but you need to call Social Security and actually file the claim, we’ve set up an appointment for you. This is especially important in compassionate allowance cases or what are called “teri” cases, terminal illness cases. In both of those, because they are expedited claims, they sometimes move more smoothly through the process if the client actually makes the claim themselves. So, we’re very alert to all of the different variables and when that would be most important.

Also, people may have trouble finding representation for compassionate allowance claims. They’re not big money makers. They’re going to be won pretty quickly. There’s not going to be a lot of back pay generally. So that may also cause a problem with people trying to find representation, but we always think it makes it easier.

Me: For someone who submitted a request, but that request has been denied, what does that process look like and how would someone go about navigating that? And is there anything specific about if the denial is due to income versus something else? Does the recognition of expansion for histiocytic syndromes, does that change anything at all about someone having a previous denial?

Sandra: The chances of it being denied are less if it’s a compassionate allowance for sure. But there is a process, an appeal process. If the initial level is denied, then there is something called reconsideration or recon. It’s my understanding that in most cases, the average wait time for an initial decision is about seven months nationally.

The process is, you get a denial in the mail. You can request a letter of explanation of denial and/or your representative can do that and then do what they call a rebuttal using the evidence to create a rebuttal of the reasons they say they deny. That process usually, in my experience, takes a couple months. If it is denied again, it goes to hearing. And you really don’t want to go to hearing if you can avoid it because there’s a long wait list and it kind of drags things out. With histiocytic disorders, I don’t see a need for it to go to hearing. I think with this compassion allowance listing that it should be able to be approved at the initial level and at the possibly the next level.

Jane: I will add that if a denial for SSDI is a denial for not enough quarters of work, that technical denial is generally not appealable. If an SSI is denied for being over income or over resources, that technical denial is generally not appealable. It never hurts to talk to a rep to see if there’s something unusual about the case.

In the case of SSDI, if a person works, (they) may become insured again. In SSI, if a person loses some of their resources, then they may become eligible once their resources are under the amount. But generally, the technical denials are not appealable.

Me: If someone is in remission and no longer has active histiocytosis, but they still need therapies such as physical therapy, mental health therapy, et cetera, are they eligible to apply for benefits?

Sandra: Not quite so black and white. Again, the diagnosis in and of itself can qualify one for the disability.

Jane: If someone meets the technical requirements, they’re eligible to apply for benefits at any time. And sometimes it’s just apply and see what happens.

Me: It sounds like there’s no negative outcome if you apply, and you’re denied other than that you wouldn’t receive the benefits. Right?

Sandra: Really nothing to lose.

Me: It sounds like go and try, it can’t hurt and maybe partnering with an advocate to help you navigate that whole process. Well, thank you. I really appreciate the insight into this.


We hope this blogpost has helped you navigate the SSDI and SSI processes and gets you on your way to receiving benefits if you found out that you qualify.

Huge thanks again to Sandra Lamb and Jane Johnson!

If there are any questions about adults and disability that this didn’t answer, please let us know, and we can pass along questions to Sandra and Jane to get more information for the community.

Our next blogpost will be on a separate topic, but after that, we will return to this topic to summarize the children and SSA Disability questions.

Stay Tuned.

Deanna