social security disability

[Lisa1962]

I'm Stage IV - was diagnosed about a year ago - and I am still working full-time.

I think I may wan't to stop - I just can't do this - I'm tired all the time.

SO let's say I apply for disability - get it - and then one day decide to work again. I assume I can notify them - but I wonder if that will make it harder to go back on again.

Anyone know if you can "un-disable" yourself?

[sally]

I have been on disability for about a year now. Dx Stage IV bc. I think you can make about $825 a month gross, and still receive benefits. Sally

[Lisa1962]

Thank you Sally -

that's not a bad amount to add to SSD money

[Ginagce]

They have a "ticket to work" program where you go back to work and you have, I believe 9 months, to see if you're gonna be able to do it. If you can great, your disability stops and if you can't then you continue to collect.

Ginagce

[Barbara2]

Is anyone collecting SS disability who is not stage IV?

[Gina]

If you are very young when you are dx or have been mostly self -employed and have only been working a few years as I was when I first got BC at the age of 33, your monthy disability amount will be based on some percentage of what you have paid into the social security system. In my case, when I was DX in 1997 and mets in 1999, my employer applied for my social security benefits as they did not want to pay for me. After 3 years of trying, I was eventually approved, but as I had only worked 12 years outside of owning my company, my monthly amount was barely $1,100.00. I am a single mother head of household living in a very high cost of living area (about 10 minutes from Washington, DC) with no other means of support.

I tried and tried to budget to live within this amount, but as my private insurance was about $285 a month and my mortgage was about $1,500 and my co-pays were running easily several hundred a month, not to mention what I paid out in prescriptions and natural remedies, and acupuncture, which at the time was NOT tax deductible as it is now, not to mention food, gas, and essentials, it was very difficult....so, naturally, I had no choice but to keep trying to work. At first, I went back to my very nice Smithsonian job as Artworks and Database Coordinator for the Resident Associate Program...but try as I might, given the rigid 9 to 5 Monday through Friday structure of the quasi-governmental institution, it was impossible. Plus, I no longer had the energy to organize and attend the late night art receptions, or do the often required travel for training or chaperone the fabulous Smithsonian travel programs or monitor the Campus on the Mall evening classes, which though NOT absolutely written into the job description, were nevertheless expected "DUTIES AS ASSIGNED". Plus, the stress of the database mining part of the job which required me to interface with every division of the institution was simply too much to juggle in between CT and muga scans, herceptin infusions, blood draws, and doc and onc appointments, etc....

Fortunately or unfortunately, I had also co- owned a rather successful S corp-a major exterior construction company in the DC Metro area-- before my dx with my business partner (who later died of cancer mets to liver also), and even though my illness and his death bankrupted the Corporation, I decided, since I had my license and knew something of owning one's own company, I would set up myself as a sole proprietor to supplement the $1,100 of social security disability benefits because-- very quickly -- it became PAINFULLY evident that there would be few companies that would want to hire an employee who would, by nature of her illness, be absent a good bit of the time. Remember these are the late 90's and early 2000--flex time was NOT nearly as widespread as it is now.

This worked well for a few years until one year, I earned about $250 over the strictly enforced MAXIMUM earnings with disability limit which that year was about $8,000, I think, so I was fined over $33,000..and essentially had to pay back every cent of social security that I had received the two and half or so years prior. You can not imagine how shocked I was. I tried to explain that I was a single mother with no other means to support me and my small son with no family in the area--that I was head of household, living in a very expensive city. They knew I had a terminal illness, but they informed me that I had basically been "terminally ill too long" and although I was still, BY LAW, disabled under the terminally ill clause, I would have to return the money or go to jail...this is no joke. The social security representative I met with was very serious. I was so sick at the time, my mets had come back again (I think that was about the 4th of 7 bouts)...anyway, I was crying and crying. I went into shock. I could not believe that they legally could do this.

As at that time, I was pretty poor and I barely had enough money to cover the essentials and didn't have money for a really good lawyer to take up the appeal process, which though long and dreary, probably could have obtained me the hallowed "waiver", I tried going with the supposedly "FREE" disability attorneys but no one seemed terribly interested in my case, and I am just that type of overly PROUD person who SERIOUSLY HATES.. above ALL THINGS... to ask for any kind of help--even when I really need it...so I just accepted the "verdict" and signed the papers shoved at me then and there, admittedly under undue distress....sighhhh...and wondered out to my car completely dazed and cried for hours before I could even drive out of the parking lot.

It has taken me over two years to pay it all back. If I live until the end of February of this year, I won't owe them anything any more and I truly HOPE and PRAY that no matter what happens to me and my son, I will not have to apply again for any reason, prefering seriously, to just die...I am not kidding--so painful was my experience with the whole ordeal that I found her-2 neu cancer to be easier to deal with than the SS disability system. I kid you not. Hopefully, things are greatly improved these days and that all of you who are applying will reap only the benefits and suffer none of the pitfalls.

But another word of caution, keep in mind that herceptin may soon be classed as a bio-technical "invention" which in many cases under Social Disability law "re-enables" a person for work of some type--even though admitedly it may not be the level or pay scale of work you used to do, and unless, as Steph very accurately points out, you are considered stage 4 under the "terminally ill" clause, in many cases, you may --in the very near future-- no longer be able to get approved, merely by being her-2 positive. So for those of you BRAVE souls who even after reading this still want to apply and should, especially if you have worked enough years to make the monthly amount significant, get those applicatations in ASAP so you can slip in UNDER the wire.

Also, I was "LUCKY" enough to have the insurance some one mentioned above with the "fine print" that once you were even just approved for medicare, the private insurer would automatically switch from your primary insurer to your secondary insurer, so in 2004, Blue Cross Blue Shield over -turned $96,000 of payments to 25 of my providers over a 3- year period retroactive back to 2001--in other words, bills that had already been paid with co-pays by me and funds from Blue Cross years back...were suddenly "UNPAID" and it became MY responsability (ill though I was) to re-process the paperwork back through Medicare and it has taken me nearly 2 years to force Medicare to REPAY all $96,000 of them. Oh, and as for my co-pays...well, that money was never returned to me by 24 providers--although Medicare did eventually pay them all except for one -- and one honest clerk in one provider's office did refund some to me. There is still one surgery outstanding for around $3, 500 which get this..smile...both MEDICARE and Blue Cross are denying for guess what...smile.."UNTIMELY FILING" hee hee heeee when it was Blue Cross themselves which took the money back retroactively to 2001 in the first place...it is REALLY good that I have always been blessed with a TREMENDOUS sense of humor....otherwise, the paperwork alone that I have lived through would have killed me faster than the her-2. But laugh as I try to, the provider that has not been paid is unfortunately my OB-GYN, and until some agreement on payment with him can be provided by either Blue Cross or Medicare --we are appealing for the 6th time to both agencies, his office is unwilling to "see me". I am at this point about a year over due for my Pap smear and mamagram and given my history of Pelvic mets, desperately would benefit from a sonogram, but because I am with an HMO, he is the designated doctor who must write the scripts and perform the Pap. Yes, having her-2 and being less that RICH...is not fun...smile....

When faced with the option of wasting the little energy I have left litigating the social security system, getting my congressman or Access Watch involved, etc. though I have genuinely considered it MANY TIMES, I decided, FOR ME, it would simply be better to just put any energy I have left over towards finding what the first and underlying cause of her-2 over-expression is and snip this whole problem in the bud, and I have been HAPPILY "employed" at that task in my free time while continuing to run my company as my "DAY JOB" all these years since and guess what? Even though the ONE thing I would agree with Social Security on is that I have indeed been "terminally" ill for WAY too long, I still am....here...smile.

Godspeed to all,
Gina

I think I was the one who warned people with private insurance to "read the fine print" for fear of losing your private insurance just because you become "Medicare eligible" even if you DO NOT UTILIZE Medicare insurance. Fortunately I did not have personal experience in this matter.

Gina, your post brought this point home in a way no one else could have

I am so sorry that you had to find this out yourself in such a horrific way


I hope people on this website get this word out to others so that people can
take all these nuances and implications into consideration before making irreversible decisions regarding insurance and disability.

Insurance and the government have this way of writing their policies to get those in true need stuck between a rock and a hard place so that they can weasel out.

It seems insurance is the one venue that even Ralph Nader would never dare to venture into.

About a month ago a lawyer posted on this her2group board and asked all of us to join her in finding a way to utilize her/our talents to help the breast cancer community. There are many already who lobby for research, making drugs available earlier, etc. but the area of insurance and disability is an area which truly affects each and every breast cancer patient no matter their level of support from family and friends. Perhaps some on this board could put their efforts into organizing help with insurance problems, lobbying states to change their regulation of these insurance practices(unfortunately insurance is the ONLY type of interstate commerce which is NOT regulated by the federal government!), and generally trying to make sure that each and every breast cancer patient does not have to fear utilizing one type of help for losing another!

Gina, I wish you only the best!

[Gina]

the FIRST person that I have shared this insurance story with who "GETS iT"...my non BC friends think that I am just out in left field. I am so grateful that you understand exactly HOW the system is "by design" arranged to wedge many of our sickest and poorest citizens right in the middle of that rock and very hard place. You are a connoisseur of Aristotle's aporiahs, no doubt as am I. I applaud you!!! smile smile smile. This law needs to be changed. You are right. I believe it was actually Cynthia from Alexandria (my area) who is a lawyer and offered to do something to make a difference. The first thing that needs to be addressed is exactly what you have just SO WELL STATED ABOVE: Insurance and Disability for her-2 mediated disease sufferers.

Again, thank you for HEARING me. I hesitated to besmear these hallowed pages with my personal skeletons as I did not want to deter any one who really NEEDS to apply, but if they do, I want to them to move forward with their EYES wide open. If someone would have even explained the intricacies of the disability law to me, BEFORE, I signed on, or had I had an insurance or social security advocate (or an ENRON-type accounting agency "re-allocate" about $250 of my uh VAST hee hee assets to the Cayman Islands..hee hee hee), perhaps I would have faired better. As it was, like many ordinary Americans, all I had was H.& R. Block and we merely dutifully reported my 1099's for the amounts that...get this?? ...smile they actually were...also, folks SHOULD keep in mind, that self-employed DISABILITY folks fall under a completely DIFFERENT set of rules than others who have an employer...also, my case, was "unusual" for many reasons..not the least of which it was very hard for my social security reviewer to look at this tall, well-dressed, energetic, fair, and somewhat intelligent woman he saw before him and be very swayed that I was "DISABLED" physically. No manner of argument on my part or even 3 of my at that time 5 binders could convince him that I really was terminally ill--he had no concept of bio-technology and herceptin. He did not know what "HER-2" was ... He harrassed me at my home endlessly sending me what amounted to dunning letters and even left scary messages on my voice mail to the effect: "Ms. Popp, we KNOW you are working and that you are intentionally exceeding your work limit as set by law...blah blah blah" and many other messages. It was so disturbing. It made me feel like I was the worst crimminal in the world...a girl from West Virginia who had been raised in church and attended 3 times a week and who had read the whole Bible at least 3 times...and the commandments...many more than that..smile..a girl who never took anything from anybody--a girl, more than any other who lived by the principle of "MAKING HER OWN LONELY WAY."

Thanks, Lani Just getting that off my chest has erased 10 years off one of my 9 cat lives..smile...

My best to you and to us all,
Gina

[Cynthia]

Gina and Lani,

Thank you for sharing your stories. I am the person who posted about wanting to get involved to try to make a difference. What a great issue to tackle.

Since last I posted, I have been meeting with a variety of folks to learn the lay of the land and to figure out how best to proceed. I have met with lobbyists and folks who work on Capitol Hill. I have also applied to attend a program called Project Lead hosted by the National Breast Cancer Coalition. It teaches women how to be breast cancer lobbyists. (Gina, since you are local, I want to talk with you about the organization to see if you too would like to become involved.) The insurance/social security system are disasters. We can't change the world, but we sure as hell can fight this fight. So while I have been quiet, please know that I am plodding away and doing my homework, so that we can strike with knowledge and a sound strategy in place.

I am glad that there are so many of us who can mobilize on the issue. (FYI, organizations like the NBCC love breast cancer survivors to participate on lobbying efforts because a lawmaker has a rough time turning away a cancer patient who is in his or her office.) Gina's story is bone chilling and needs to be told. Thanks for sharing it. My blood is boiling.

Now I have to go check out the Super Bowl and for the sake of my hubby from Pittsburgh, I am saying prayers for the Steelers.

Stay well,

Cynthia

Perhaps a good lawmaker to start with would be Congressman John Murtha of Pennsylvania. I believe it is his wife's (mother's?) name on the only Breast Cancer Center outside Walter Reed giving the her2neu vaccine both to metastatic patients and to early breast cancer patients. Also, I believe he got a lot of publicity recently as a Vietnam vet, so I am sure he understands disability.

Another word of warning,however. The country's biggest nongovernmental disability insurance provider (selling 80% of ALL individual and group/employers disability policies) is a company called Provident/Unum which has been sued so often in the past that they have been on 60 Minutes (for denying disability to an opthalmologic surgeon with Parkinson's disease, no less), sued by their own stockholders(for having too many cases against them when the two companies merged), and put on "probation" with all cases denied since 1997 being reopened by order of the State of California. This has all been well-covered by the LA Times.

I understand they were also sued for denying disability to a breast cancer patient, who won an ENORMOUS MULTIMILLION DOLLAR decision against them--they later tried to appeal, figuring they could OUTLAST HER!( I do not believe they did!)

So there are problems with both the private and governmental sector and how they interface.

A section/link on this website on disability laws might be helpful.


Yes indeed the ERISA laws only cover group employer provider disability insurance, private policies are not covered by those laws.

I am not an attorney--just recording what I have gleened over the years.

I hope this info helps someone and that Cynthia can make the right contacts to battle this. Tommy Thompson's wife and daughter both were diagnosed and treated for breast cancer while he served in the Cabinet. John Edward's wife, an attorney herself I believe was diagnosed just as the campaign was lost. Again, there are, thank God, many raising money and awareness regarding the need to fund breast cancer research. This bread and butter (and psyche) issue has not.

Off my soapbox for now!

Lani

PS Also tell your friends who are self-employed and who are in good health NOT to deduct their disability insurance premiums from their tax returns when they itemize--IF THEY DO, their monthly insurance payments will be taxed, IF THEY DO NOT, it will not. Most people find this out once it is too late.

Also consider Senator Diane Feinstein and Senator Barbara Boxer both of California. They have created laws that protect breast cancer patients and the right of women to yearly mammograms and pap smears paid for by insurance companies.

[cynthia1962]

I live in the state of tn stage iiA and grade 2 I have been trying not approved yet. It is hard to gett SSDI I don't know why my oncologist wrote a letter to them stating he does not want me to work because I have been very tired, weak, migranes and more. They still have not approved me.

[tdonnelly]

After working for 50 corporations in my lifetime my check is $596.00 after 90.00 for ssi excuse me where is one to live on that for a month............in illinois hud housing lockdown from cook country.

Thank you corporate leaders of america
i pay all the taxes and do all work.

No lol here. Wi told me i should never have been denied 2x in illinois-bageovich political interference

tami

[Jackie07]

Cynthia,

Joe had mentioned (posted) several times that we should contact our local congressman on the SSDI application. I retained an attorney before I saw his advice when I was fed up with the bureaucracy. Part of the reason I think might be that I applied for it by myself - thus they don't think I'm disabled. The funniest part was that they said "according to your work history..." I had been fired from every one of my jobs just about since my brain surgery in 1990. 'A spotty work history' is the description used by the psychologist who had reviewed my case for Texas Rehabilitation Commission.

Our local law firm was very happy to accept my case pro bono last fall since I'd had numerous job losses resulted from multiple cancer treatments (brain tumor and breast cancer - both with recurrences). I'm scheduled to attend a hearing December 8, exactly about a year after the lawyer had taken my case. Part of the back pay will go to the attorney (not exceeding $5000.00) if my case gets approved.

If you are currently working, perhaps they wanted you to go on the company's disability program first. I don't really know the details of the whole mechanism. My PhD Sister-in-law processed the application for her mechanic husband after his heart procedure, but my husband is not capable of handling this type of stuff for me...

[Joan M]

I don't know all the laws, but here's what I do know about metastatic breast cancer and short-term disability, long-term disability, Social Security Disability, accelerated death benefits and COBRA.

Some companies offer STD and LTD. After the STD period is exhausted (usually 180 days, but in my case it was 90 days), LTD kicks in. STD is usually an earned benefit. That is, the longer you work at a company the longer you will be paid your full salary or part of your salary during the STD period.

LTD is most likely 50% of your salary. Usually, there's an opt-in plan in which you pay a few dollars (like around $5.00) out of each pay check to get a higher percentage, like 70%, for example.

Most insurance companies (that is, your employer's insurance carrier, as they're paying STD and LTD) require a bc patient to apply for SSD when they apply for LTD.

It seems the Social Security Administration pretty much automatically approves patients with advanced cancer. SSD starts usually starts six months after you first went on STD(although I've heard not to be surprised if you get a retroactive check, even though the SSA's brochure said the benefit is not retroactive).

When SSD starts, LTD, which starts immediately when you're approved for LTD and is retroactive to the first day of your LTD, will subtract out your SSD benefits (that is, LTD - SSD = your income. There's no double-dipping here). However, private pensions, 401(k) distributions, annuity distributions, etc. are not subtracted.

An accelerated death benefit is a percentage of the life insurance your company has on you which can be advanced to you if your oncologist says you're terminally ill. Terminally ill is defined by how long you have to live, such as 6, 12 or 24 months. Of course, your company pays a higher premium for 24 months (in my case it was only 6 months, and it seems likely I'll be around longer than that in terms of my cancer -- thank goodness). However, your company may have a longer definition of terminally ill.

COBRA, or continuation health benefits, are available if you're laid off from your job. Howerver, here's the specific limitations, from the DOL:

http://www.dol.gov/ebsa/faqs/faq_consumer_cobra.HTML

Also, if it applies to you, COBRA payments are considered a medical expense for 401(k) distributions prior to age 59 1/2. That is, you pay the tax on distributions because your contributions were on tax-deferred money, but you're exempt from paying the 10% penalty to the IRS.

You have to be on SSD for two years before being eligible for Medicare, and your age is not a factor in this. Also, if you're declared disabled COBRA is extended to 29 months, which bridges the gap in medical coverage.

Hope this helps.

Joan

[Jackie07]

Thanks for the explanation, Joan. I see now why my former employers couldn't wait to send me out of the door. It's a strange system that I have to be 'physically capable' of working to collect my unemployment insurance and at the same time I'm going to attend the court hearing to prove that I am disabled.

Haven't slept whole night, guess I could add 'insomnia' to the list of my disabilities...

[cynthia1962]

Joe

I tried your remarks called the congressman office they can not do anything unless you are a stage IV so what can a person do if they don't have a stage IV I am a stage 2a grade 2 and applied in May got denied in September, September got an attorney we applied for reconsideration in September and my onc sent a letter stating he do not want me to work. What they want people to do die before we receive the money we deserve.