Self-employed and not sure of next steps

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TippiLeigh

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I’m a Realtor, so I am self-employed. (I do pay self-employment taxes so I am paying into disability, medicare, etc. and I had traditional jobs for the 30 years prior.) I haven’t not been working in person for about a year since my symptoms started getting much worse. But I still do make some income (referral fees) when I refer one of my clients to another agent. Also, I’m the subscriber for our health insurance for my family. I get it through the California Association of Realtors at a group rate.

My husband makes enough money to support our family, so at this point I‘m not as concerned about income as much as I am wondering what I should do going forward with health insurance and more specifically, Medicare. We pay so much for insurance, if I qualify for Medicare that would help a lot with equipment and services I need, but do I need to go on full disability first for that? Would I be allowed to still make some income and still qualify.

I’m just feeling really overwhelmed on where to start with all of this. I’ll be 45 this year, so I’m not at retirement age and my husband’s practice doesn’t offer health insurance so if I can’t get it through my job, then we’ll have to find another private insurance. Also, I have PLS, not ALS, so not sure what type of difference that makes to the government agencies.

I’d appreciate any guidance or at least be pointed in the right direction. I see a lot of info when it’s a tradition job as an employee, but being self-employed seems a little more confusion. Thanks!
 

Nikki J

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You are allowed to make a small amount while on ssdi but I have heard that if you are working even a little bit it can make initial qualification tougher. This is likely magnified if you are self employed.
I am also not sure how the ssa is currently viewing pls. I know someone whose doctor put umn dominant ALS because she said PLS would not get the fast track. This was a year or more ago. If it doesn’t qualify for fast track you could still get ssdi if you are disabled enough but medicare is a 2 year wait I believe.

ssdi is generally more difficult the younger you are. They look very hard at a 30 yo but maybe not so much at a 62 yo. For ALS this doesn’t factor in but PLS it might

at best medicare would only cover you. However aca looks like it is surviving for at least 3 plus more years

ETA I believe the umnd als label was supported by a mildly abnormal emg that allowed the neuro to stretch a point
 
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Clearwater AL

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Tippi, If you can, or have, a medically written diagnosis by your
Neurologist confirming PLS you can send that to SSDI for review.
 

swalker

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I was an owner of a business for about 20 years before diagnosis. It was an LLC with pass through taxation, so for tax purposes I was considered self employed and paid self employment tax. Before starting that company, I had worked as an employee at other companies for about 20 years.

I had health insurance through my company. When I became disabled I was able to retain that coverage using COBRA. I am no expert in the matter, but for me, COBRA covered both my wife and me. It was outrageously expensive (about $24,000 per year).

We used COBRA for as long as we qualified because that policy was far, far better for my wife than any ACA policy we could get in our area.

After COBRA eligibility expired, we switched me to Medicare (parts A and B) with a Medicare Supplement (plan G). My wife went onto an ACA plan, which is awful (very expensive, very high deductible, an HMO with very few providers). It costs about $1400 per month (just for her!).

In hindsight, I can say our biggest surprise was the difficulty and cost of keeping us covered by medical insurance.

I also had a long term disability policy through my work. When I stopped working, I had to sit out a waiting period (can't remember how long, but around a few weeks). I then started receiving disability benefits from that policy. I have a friend at church who is a lawyer and he helped file all the paperwork for claiming disability benefits under that policy. It really took a load off of me and the approval was very fast.

That disability policy had some important clauses. First, the benefit was reduced by any benefits I received from social security disability income (SSDI). Second, if I did not apply for SSDI, they automatically assumed that I would have qualified for SSDI and would subtract the amount they estimated SSDI would have paid if I had applied and been approved for SSDI.

They also provided legal representation in applying for SSDI. They REALLY wanted me to qualify for SSDI.

From the time the SSDI paperwork was submitted until I was approved was about 20 days. It took a bit longer than some MND cases because they required me to present myself in person to a social security office, the closest of which was 60 miles away. It took me a week to fit that into my schedule.

I worked until I absolutely could not work any more. I loved my job and felt like a was able to make really significant contributions to some important things. When I stopped working, I thought I would be able to rest more and recover from my hectic work schedule. I was incredibly surprised that when I stopped working I simply transitioned into working full time + on insurance paperwork for several months.

Steve
 

TippiLeigh

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Thank you all so much for you input. It’s very helpful!
 

Vincent

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I always had my ALS Clinic fill out all government form for me. They usually know what buttons to push to make things happen. And all correspondence is signed by your Specialist. If you can move to Canada, your healthcare system is really cruel.
 
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JimInVA

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When Darcey was ultimately diagnosed at Johns Hopkins, she was told, "This could be PLS. But PLS generally becomes the same as ALS at some [varied] later time. And because some of our newer legislation that is aimed at helping those with MND/ALS to be Fast Tracked for Medicare and Disability, doesn't yet acknowledge PLS as a "equally qualified diagnosis", we won't designate PLS. Or said, otherwise, your official diagnosis will always be ALS."

My best...

Jim
 

KimT

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One of the problems with the ACA is that some states don't have their own exchanges. California does!

Also, can you still keep your insurance through The Association of Realtors even if you are inactive?

I do know, to get disability, you need to stop work completely. After you start getting it, it depends. If you have any kind of work-related disability plan, they will monitor you for a few years. If not, I believe it's safe to make under the maximum amount while disabled.

SS will want to see all your doctor's records, along with letters. If a doctor would diagnose you with upper motor neuron dominant ALS, you'd get immediate approval. If not, you'll have to go through the hoops and then wait for 24 months to get Medicare.

I was self employed for a time before I went to work at the college. If you show any income, even referral fees, they'll deny you.

I know how hard these decisions can be. I thought I'd go crazy getting my long-term disability from Unum. Their process was much more complicated than getting SSDI.
 

Clearwater AL

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Look, it's basic... everyone's circumstances and situations are different.

If you have a written confirmed diagnosis by a Neurologist stating that his/her
final determination is PLS... submit it to SSDI for their review. They will request all
supporting documentation from the Neurologist (even if you include it) and verify
that all protocol has been satisfied.

Went through this all with Ann.

They may request a second opinion depending the Neuro's qualifications.

If you are awarded SSDI the window of any kind of income other than... is very
small. Yes, they do follow up. Many have got caught... our local paper/TV
have covered stories.
 

lgelb

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The special Medicare coverage without the 24-month SSDI waiting period, is only for ALS and end-stage renal disease (kidney failure), full stop. There is no stipulation for other disorders "on the spectrum." As Al notes, of course, you can apply for SSDI (I have linked to the "other motor neuron diseases" section), just that Medicare will not kick in as soon as for ALS.

If your EMG is normal, it's doubtful that any neurologist will dx ALS-- a good thing from the health perspective, of course.
 

rmt

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My husband has had 2 normal EMGs and the neuromuscular specialist at UC Irvine still diagnosed him with bulbar ALS because "he doesn't believe in PLS". I was pretty surprised, but he was adamant about it. The neuromuscular specialist at University of Washington still thinks it is PLS. Clearly, there is some difference of opinion in the neuromuscular community! But if you want to get an ALS diagnosis, I recommend UC Irvine.
 

TippiLeigh

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DX UMND/PLS
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07/2020
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I go back next month to both neuromuscular neurologists I see (one at UCSF and one at Stanford) and I’ll see what they say as far as diagnosis. It’s what makes it so difficult when you’re in the “waiting 4 years to see if your PLS converts to ALS before they’ll give you a final diagnosis”.

I’m in a couple of different PLS Facebook page, and several of them have had negative EMG’s but their neuromuscular neurologists classified them as UMND-ALS and they were able to get SSDI immediately. (They all gave different reasons for why their neurologists did that. Some did it strictly to help them get SSDI sooner. Some did it because they believe that PLS and ALS should be classified as MND and shouldn’t be seperated out, and some believe PLS is just UMND-ALS and PLS isn’t really it’s own disease.) A lot is just about semantics.

@rmt You are very correct that every neurologist is different and they all have different theories on all of this. No two cases are exactly the same.

@KimT I need to check with the Association of Realtors to see what my options are with them. There are certain pros and cons with keeping my license so I need to wade through all of that also. Ultimately, I want to make sure that I don’t screw myself up by doing something in the wrong order or not doing it correcty LOL. Before becoming a realtor, I was an analyst for the government for about 15 years. You don’t cross one T or dot one I correctly, and your paperwork is sent into the abyss for months....
 

bhg

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Pre-diagnoses 2 neuros said PLS. An EMG get me into ALS clinic, diagnosis UMN dominant slow progress variant of ALS. Several years into clinic I asked the new neuro about the wording. He said he didn’t think there was PLS, that it’s just all variations of the same thing. Hopefully, they can just change the wording. Good luck. Betty
 
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