Homeless and Need Help - What evidence won your disability case?

[mechamoss]

My previous post has been lost to the update ether so I'm re-posting for now. Again, I understand that no one can provide direct legal or medical advice but any experiences or info. is very welcome.

I'm having zero luck finding a lawyer to take my case despite a positive tilt-table / POTS / Dysautonomia diagnosis and a vocational assessment that found me unable to work. I also deal with insomnia, brain fog, chronic pain, myoclonus, and gut issues but am having trouble providing proof in the cut-and-dry blood test way SSI requires. I know some fibro cases are won through equivalencies but have been blown off every time I bring this up. I'm not sure if it's a lack of familiarity with my condition, a time vs. payout imbalance, them simply not wanting to deal with a homeless client, or all of the above.

So, questions:

• How did you find your lawyer?

My state bar won't provide me with names because of my homeless status. All they'd give me was the info for an underfunded organization not taking new clients for a year+. I've already exhausted my two local NOLO and NOSCR recommendations with no success. 

• What evidence did you present that worked in your favor? 

Did equivalencies come into play at all? I'm having enormous trouble providing sufficient proof in the way SSI demands.  Am particularly interested in cases won at the judge / hearing level.

• Have you ever had a Functional Capacity Assessment?

 What does it entail? My primary is out of their depth and no one wants to touch me until I meet with my new POTS specialist in May.  She's recommended a FCA in the meantime but has no idea what it entails, who for-sure does them, or even what the CPT code for one would be (so I can check if it would be covered by insurance). Regardless, thank you all for your reading.

[Katybug]

I don't know what state you are in but I'd be happy to give you the attorney's name that I used for my case. He is allowed to practice in a few states, so maybe you might be in a state where he's licensed, and he had one POTS case prior to mine, so I know he's had at least 2 (and that was 2011/2012, so he may have more experience since then.)

At the time I had my hearing, I had well over 600 pages of medical documentation which the attorney said is about 3x what most cases have.

I was also diagnosed with POTS, EDS, MCAS, and migraine. The court had requested their own medical "expert" to "attend" the hearing which he did via speaker phone. He was a nephrologist! I thought I was sunk. BUT, he was a nephrologist that was aware of EDS and it's connection to POTS. He told the judge that the symptoms of presyncope that I regularly experienced from POTS was the equivalent to "Syncope" which is one of the conditions on the list of things that automatically qualify you for SSDI. Because he validated this equivalency,  the judge found in my favor. 

I will say that my specialists had everything well documented and my PCP made a note every time I saw him stating that he did not believe I could perform "meaningful work" due to my symptoms and their unpredictability.  I had documentation from a POTS neurologist who is also a certified headache specialist, a cardiologist, a geneticist, an immunologist, and my PCP.

The other thing I remember my attorney telling me is that it was important to have any and all medical issues/illnesses/conditions documented because at the point of a hearing, the judge doesn't look at just the "disabling" issue but also if there are other comorbid conditions that compound the disability  (like my migraines aren't disabling but they do compound the effects and severity of my presyncope from my POTS on days when I also have a migraine.)

Let me know if you want the attorney's info and I'll PM it to you.

Edited December 19, 2016 by Katybug

[mechamoss]

I'm not sure where you're located but yes, I'd be immensely grateful for a name! 

Dang, sounds like you were much better prepared in the records dept. I experienced some gaps in insurance because I couldn't afford it but I saw as many doctors as I could. Unfortunately even after testimony that it must be medical from various psychs pretty much every provider I saw was convinced it must be psychological since it's easier to pretend your patient is just refusing to seek the treatment they need rather than admitting you don't know the answer (was even refused a tilt table test when my primary symptom was syncope). Speaking of, I've experienced syncope and near-syncope for years; its surprising to me hearing that it's supposedly an auto-qualifier when compared with my experience of lawyers treating it as useless info. 

[Katybug]

Here is a link to the ssa.gov information showing that under the section of "cardiac impairments", syncope is listed. 

https://www.ssa.gov/disability/professionals/bluebook/4.00-Cardiovascular-Adult.htm#4_05

I will PM you the attorney's info. 

Also, I forgot to mention I  the first response, I am on SSDI, which is different than SSI, which is what you mentioned. I don't know what, if any, difference there is in the medical qualifications. 

[yogini]

Info about financial assistance for patients with Dysautonomia is here. You might want to contact DI for advice about your particular situation.  I never applied for SSI but from what I understand it is a very long process, often with multiple appeals. 

http://www.dysautonomiainternational.org/page.php?ID=36

[mechamoss]

I've looked into a lot of these but there's a few I've never heard of before too - thank you so much Yogini. It's somewhere to start.

 

[SarahA33]

here is the dinet site with ssd info:

I'm in new York and would be happy to send you my attorneys name if your in ny.

I was approved for POTS, chronic migraine, epilepsy. I used an attorney when I first applied, and was approved the first time. I think the reason is because the lawyer knew the correct way to fill everything out. My brainfog was very bad at that point and I wouldn't have been able to do it all by myself.

I had many records like Katie did, and each time I went into the hospital or had a test ordered by a specialist, i made sure my PCP had all the records and reports. I will look up some more links for you.

[mechamoss]

Not in New York unfortunately.

Did your brain fog not come into play in court? 

[mechamoss]

Mods feel free to delete this particular comment - Merged post was here but has now been pasted back up top. 

[Katybug]

Hi. I sent you 2 PMs. There is information in both I'd prefer not to share publicly. Hope it helps.

 

[Katybug]

Here is a link to the SSA.gov site and page showing the "Listing" that my judge ruled was "medically equivalent " to my condition based on the testimony of the medical expert she had attend my hearing via conference call.  It is listing 4.05.

https://www.ssa.gov/disability/professionals/bluebook/4.00-Cardiovascular-Adult.htm#4_05

(Btw, the medical expert was a nephrologist which was very concerning to me. However, he had reviewed my file and was familiar enough with POTS and EDS, and also aware of the level of expertise of my doctors, that it turned out ok.)

[mechamoss]

Of course, I understand. Anything discussed via pm would always be in confidence.  

Thank you very much for the specific listing! That gives me something concrete to explore with a lawyer. 

[SarahA33]

Mechamoss,  I've merged the 2 posts in one for you, all of the comments that were in the original topic are now here.   You just have to edit your title now appropriately.

[mechamoss]

Thanks SarahA33! I've moved copied everything up into the main post. Feel free to delete the extra blank comment marked delete. 

To anyone just scanning the thread:  I'm still in a bad spot and very much in need to advice. I can't figure out what type of  evidence I need for a lawyer to give me the time of day. 

[SarahA33]

I'm sorry to hear that things haven't improved for you yet.  My attorney focused a great deal on the medications and their side effect's. For example, I take Ativan for both a central nervous system depressant & anxiety, so he focused on the side effects like memory loss, unsteadiness, fatigue, etc. that would affect my ability to work. Also, focused a lot on my POTS symptoms and how they affected my daily life. He told me one of the most important pieces were the letters from my doctors. They said I was 100% unable to work, a brief description of POTS and the symptoms I suffer from as a result: tachycardia, cognitive impairment, insomnia,  pre-syncope, hypertension & orthostatic intolerance, anxiety, GI issues, migraines.  included the specialty's that I'd been seen by prior, the medications that I'd tried & failed.  It's going back a few years but I believe my lawyer asked me to have my pharmacy print & sign my rx records going back 2 years to show adherence, ER visits, specialists & pcp reports, testing. You may have seen these, but just in case --

http://www.disability-benefits-help.org/disabling-conditions/dysautonomia

http://www.disabilitysecrets.com/conditions-page-2-55.html

http://www.ultimatedisabilityguide.com/medical_listings.html - take a look in the cardio section

 

[mechamoss]

Aside from an anti-seizure medication an old neurologist gave me the option of trying (which I opted against due to dangerous side effects) and previous steroid injections for chronic pain I'm not on and haven't been on anything for years. My bp / heart rate fluctuate dramatically making beta blockers not a good choice. I've been able to go to physical therapy for a few months now but that counts for jack to a lawyer since apparently a PT's testimony means nothing in court. No doctors want to touch me till I meet with a new specialist in May but I just can't wait that long. Heck I can't even stay in a homeless shelter without being in a work program and my local vocational rehab office is backed up to **** and back. 

I guess I'm just having trouble wrapping my mind around why I've been form lettered that I have insufficient evidence for a lawyer to take my case when I'm going through all the correct motions. I can't figure out a next step and my physical exhaustion, cognitive fog, and mobility difficulties are making basic functioning extremely challenging. I'm sorry to ramble; I'm just at the end of my rope.

[username]

Has anyone went to an appeal hearing without a lawyer? I tried to find a lawyer when I started the appeal process, but no one I contacted seemed interested in bothering with an SSI case dealing with an obscure condition, and I eventually gave up and sent the papers in myself. I talked to some disability advocacy group trough my health insurance, but they wouldn't touch my case since I had started the process myself.

 

I finally got a court date this march after about 2 years of waiting, but I'm not very optimistic about my chances to say the least. They have like a decades worth of my medical records including my autonomic neuropathy diagnosis, but I'm not sure what I can get in the way of doctor's letters. I stopped seeing my pots neurologist over a year ago when they stopped taking my insurance (the only one I could find in NY to see me), and I don't think my primary even understands what an autonomic disorder is.