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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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ahimsa

ahimsa_pdx on twitter
Messages
1,921
With a lawyer you were able to receive SS benefits while still receiving 70% of your former income?
I think I can provide a general answer. Note, this is NOT related Gingergrrl's situation and I'm not trying to speak for her.

This is just a general answer about what little I have learned about disability insurance over the years. Note that everyone has a different situation and there are many complications that I have left out.

Many people who work have social security as their only disability insurance. If they get disabled they file with SS (social security). Getting disability benefits relies on 1) having paid into the system for long enough and recently enough and 2) providing evidence that the person is unable to work (at any kind of job, not just their most recent job).

People who are too young to have paid into the system long enough, or who were out of the workforce for too long before getting disabled (and probably other situations), cannot file for SS disability. But income/assets are not related to the amount of disability payments from SS. There is a different program that does rely on income, called SSI (Supplemental Security Income), but I don't know much about it.

A disabled person can have a partner who works, or have lots of money in the bank, or even rich friends and relatives who give them money. None of these affect the amount of the SS disability payment. The payment is based on that patient's work history, how much was paid into the system over the years.

This is one reason why going on part time hours (as opposed to a formal medical leave as part of short term or long term disability, if you have such a policy) can be very bad for people with chronic illness. It reduces the amount of taxes paid into the SS system. If this goes on for several years, and then the patient gets too sick to work at all, and must file for long term disability with SS, then their payment might be much lower than expected. The disability payment is based on those most recent years of part time hours, not the former salary.

Some people have an additional disability insurance policy on top of social security, either as part of their employee benefits or a private disability policy that they bought for themselves. As an example, a surgeon might buy a policy to cover disability in the event that something goes wrong with her hands or eyesight. She might still be able to work on some minimum wage job but her policy provides coverage if she is unable to work as a surgeon even if she is still well enough to work. And there are many kinds of these disability policies with a slew of different restrictions.

These policies usually have a clause saying that the person must file for social security disability to offset the amount that the insurance company has to pay out. The policy might promise 60% or 70% of a patient's former salary but this is a combination of what social security pays the patient and what the disability insurance company pays.

You are correct that SS disability does not pay anywhere near 70% of former salary. And the SS disability payments are not in addition to 70% of the person's salary. They make up part of the total 70% that the disability insurance company has promised to cover.

If you have not paid for a private disability insurance policy, or have disability insurance as part of your employee benefits, then this complication does not apply to you. And if you happen to have long term disability insurance as part of your employee benefits it is probably covered by ERISA laws. It is extremely difficult, if not impossible, for most patients to claim long term disability from any policy that is covered by ERISA laws.

I hope this makes sense.
 
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Gingergrrl

Senior Member
Messages
16,171
With a lawyer you were able to receive SS benefits while still receiving 70% of your former income?

I have not been approved for SS yet and still in phase one of application process. My atty believes I will be denied the first go-round and probably even second appeal but then we got to court (locally) and he believes I will be approved.

The 70% of my former income from the private disability plan will never change as long as I remain disabled until age 65 b/c I bought and paid into that plan for 12 yrs out of my paychecks b/c I worked for someone who did not pay into the state disability system so that was my only option (although it was not required that we buy that plan.)

So once I am approved for SS, that portion is deducted from private plan so I will receive same total amount but from different sources (and I will owe one time lump sum to private plan & atty gets their fee from that portion.)

My case is unique but in case it helps, I am happy to explain (without using names of atty, private plan etc, for confidentiality of course!)
 

Gingergrrl

Senior Member
Messages
16,171
These policies usually have a clause saying that the person must file for social security disability to offset the amount that the insurance company has to pay out. The policy might promise 60% or 70% of a patient's former salary but this is a combination of what social security pays the patient and what the disability insurance company pays.

You are correct that SS disability does not pay anywhere near 70% of former salary. And the SS disability payments are not in addition to 70% of the person's salary. They make up part of the total 70% that the disability insurance company has promised to cover.

This is exactly correct and what is happening in my case. Except that my work also required that I apply for their own retirement/disability program (even though I am more than 20 yrs from real retirement age) and was approved immediately.

So in my case, the benefit actually comes from three places once I am approved for SS (not two) but the total never changes and still 70%. Just from three sources vs. one.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
@Sushi thanks for reminding me of that and as you know, my current insurance sucks and pays for close to nothing!
The downside of Medicare is that if you go to a doc who has opted out of Medicare (and most ME/CFS docs have) you pay out of pocket and can't file a claim. The plus side is that if you go to a doc who takes Medicare and if you have a supplemental policy, together they pay 100% usually.
 

Gingergrrl

Senior Member
Messages
16,171
The downside of Medicare is that if you go to a doc who has opted out of Medicare (and most ME/CFS docs have) you pay out of pocket and can't file a claim. The plus side is that if you go to a doc who takes Medicare and if you have a supplemental policy, together they pay 100% usually.

@Sushi I will be asking you more about Medicare once I get to that point! Am expecting the first denial of SS to occur soon and then we file first appeal. Even though I am close to bed bound and use a wheelchair inside the house and can't even wash my own hair, the atty said to expect to be denied twice! Crazy system.
 

Gingergrrl

Senior Member
Messages
16,171
I think (as I remember) you only qualify for Medicare 2 years after the date of your first application...or something like that.

I am not sure but hopefully I will fall in that category.

@Aerose sorry if we got off track in your thread and I hope your situation has improved.
 

markielock

Senior Member
Messages
319
I moved back in with my parents mid-October last year. I am currently recieving the assessment-phase Employment and Support allowance pending an assessment from one of the Goverment's 'medcial examiners'. I'm not looking forward to it lol. Trial and error has shown me conventional employment doesn't work for me, which drastically narrows my options as it must do for many of us, so I guess I'm stuck here until I make something else work.
 
Messages
170
Location
Hippietown
I live in my house with my wife and 2 children. I have been off work for only 5 weeks as I was working until June 5th when my body couldn't take any more. Currently, money isn't a huge issue as I saved a good amount over the past 20 years and my wife is currently working 2 jobs, but it won' t last forever...I need to either find treatment that can get me back to at least part time work or get on disability.
 

geraldt52

Senior Member
Messages
602
... Currently, money isn't a huge issue as I saved a good amount over the past 20 years and my wife is currently working 2 jobs, but it won' t last forever...I need to either find treatment that can get me back to at least part time work or get on disability.

Some unsolicited advice: If you were forced to stop working because of your illness, you shouldn't hesitate to begin the process of applying for disability benefits or rely on some future "treatment" getting you back to work.

First step, find a lawyer who specializes in Social Security Disability and have a frank discussion with them. They take their fee from your past due benefits, and only if you win benefits. Don't wait to see what happens...don't try to go it alone. And be extremely cautious about working part time in an attempt to continue working, as you can be sure that Social Security will use that against you.
 

Aerose91

Senior Member
Messages
1,401
as mentioned above working part time right now could be used against you.

This is what's happening to me. I was be to keep a small stipend from my company since I stopped working but it has ruined my chances of getting SS. I make 860/month and the disability office told me I make too much. I asked how a person is supposed to live on under $11,000 a year and they said if I'm healthy enough to earn $11,000/year I'm healthy enough to work full time.
 
Messages
2,573
Location
US
This is what's happening to me. I was be to keep a small stipend from my company since I stopped working but it has ruined my chances of getting SS. I make 860/month and the disability office told me I make too much. I asked how a person is supposed to live on under $11,000 a year and they said if I'm healthy enough to earn $11,000/year I'm healthy enough to work full time.

Did you check with an attorney? I believe the disability office purposely misleads people into thinking they cannot file.

An earned income of above SGA would disqualify you, but an unearned income should not. You would want an attorney to help document that your $860 is passive unearned income.

Also, SGA keeps increasing because of inflation or other reasons. In 2015, is $1090 a month, so you are under the SGA amounts, so even if it was earned income, it is possible to get approved. It is harder to prove a claim when the person is working, so some attorneys won't take someone earning over about $800 a month. But that is for earned income which you don't have.

Edit: This is if you are still covered under SSDI, if you paid into it enough in the past 10 years. SSI has different rules and earned and unearned won't matter, you can't get it.
 
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Messages
170
Location
Hippietown
Some unsolicited advice: If you were forced to stop working because of your illness, you shouldn't hesitate to begin the process of applying for disability benefits or rely on some future "treatment" getting you back to work.

First step, find a lawyer who specializes in Social Security Disability and have a frank discussion with them. They take their fee from your past due benefits, and only if you win benefits. Don't wait to see what happens...don't try to go it alone. And be extremely cautious about working part time in an attempt to continue working, as you can be sure that Social Security will use that against you.

Thanks for the advice @geraldt52

Can I file even if I don't have an ME/CFS diagnosis at this point?
 
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geraldt52

Senior Member
Messages
602
Did you check with an attorney? I believe the disability office purposely misleads people into thinking they cannot file...

+1 on everything in SickOfSickness' post, Aerose91. I don't know enough to advise you on how your situation can be handled, but I'm pretty sure it can be handled in a way that you are still qualified for SS Disability.
 

geraldt52

Senior Member
Messages
602
...Can I file even if I don't have an ME/CFS diagnosis at this point?

A diagnosis of ME/CFS neither qualifies you or disqualifies you for Social Security Disability...what is required is that you can demonstrate that your condition and symptoms prevent you from working.

Having said that, you're going to need a supportive doctor in the process, and the nature of CFS pretty well dictates that that doctor will need to be a CFS "specialist", or at least a doctor who recognizes CFS as a serious and disabling condition...many don't. A lawyer who has previously handled CFS cases for Social Security Disability may be able to help you in regards to a supportive doctor as well. It costs you nothing to talk to a lawyer who handles these cases, and everything said between them and you is confidential and can go no further...so don't hesitate to see one.

What you don't want to do is engage Social Security on your own, and make a mistake that haunts you through the entire process, which I'm sad to tell you can take years.