I appreciate all of the support I have received and all of the support I have seen given to others. This is a great group.
I am reaching the age when I can apply for my Social Security Retirement benefit (US). Now, I am self-employed and have no intention of actually retiring any time soon. I admit that I no longer actually work full-time, I can just get everything necessary done in the hours I currently put in.
In looking over the rules, it seems that I qualify for Social Security Disability on at least three counts---two of them are automatic approvals (Inflammatory Breast Cancer and Metastatic Disease) and one would need approval by review (Lymphedema). But am I truly disabled? I think that if I worked for anyone else, they would consider me to be a bit disabled. I cannot type as well as I used to, because of peripheral neuropathy caused by my current treatments. Other side effects include sporadic weakness, difficulty walking (again, the peripheral neuropathy), probably some memory issues, and all of the usual suspects.
Disability benefits would be far greater than what I would receive under retirement at 62 (to the tune of $700 per month!)
Any thoughts from your own experience would be appreciated.
Anne (in Cincinnati)
[Original diagnosis with IBC in February 2002, initial treatment ended at the end of 2002, diagnosed with MBC in May 2019, now on treatment for life]
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CincinnatiExperience
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Hi Anne, yes metastatic breast cancer is on the compassionate allowance list for SSDI. It means the burden of proof for disability is different - it's not quite as much paperwork and such. I worked for a couple years after my diagnosis and then found I just couldn't do work and also take care of myself so I went out on STD and LTD (worked for a big company) and Long term disability requires you apply for SSDI. I'm not sure about the difference with retirement as I think SSDI transitions to retirement when you reach the retirement age. I've struggled with the "disabled" label but what it means for me is the time and resource to focus on my health and managing side effects (fatigue, neuropathy, insomnia, joints, etc) and giving the meds every opportunity to be successful.
Anne (in Georgia)
SSDI is basically automatic with MBC with what is called Compassionate Care Allowance. It’s a very streamlined application process. It may still take 2-3 months before the actually checks start but the approval process is quick. I am collecting since November
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There is a five month UNPAID waiting period when the SSDI clock starts ticking. That is the law and applies to everyone. I waited a long time before I applied (and even tried working, one job for three months, one for a month) but I could not continue. When I applied (the nurse navigator did all the work, I just signed the papers). SSDI actually to my surprise went back a year and a half before I even applied (I did not know that they did that to my 1st diagnosis of stage iii invasive) and counted my two jobs as failed attempts at work (if I had stayed at one job for six months, they would have started from the last date of that job) and they gave me a year and a half back pay over $20,000 which was a surprise and a blessing because I went through all my savings but they still counted the five month unpaid waiting period.
Approval should be automatic with the MBC diagnosis. There is delay of 5 mo after the date of disability before it starts. Then because checks come in the following month, it was 6 months before my first check came. In my case that date was my diagnosis. What may be helpful is that after 2 years on SS disability you are eligible for Medicare.
I agree with NShaft. Your cost for insurance will go down when you are eligible for Medicare ( assuming you are on COBRA or an expensive individual plan). ❤️🙏❤️
Good point. If you are on Cobra be sure you notify them within the timeframe once you are declared disabled. I am on Cobra and did not know about the 60 day window to notify them so I am stuck having to find alternate insurance after Cobra runs out and I'm eligible for medicare.
Hello, I actually work for Social Security. MBC is a compassionate allowance and there is a 5 month waiting period before payments start BUT disability is not just linked to diagnosis it's also earnings. If you are still working and earn above the substantial gainful activity limit of $1260 gross per month or if you are self employed there is a whole different set of rules (3 tests) for self employment.... its an automatic denial for disability benefits. I would encourage you contact your local SSA to make appointment to discuss your specific situation with a claims specialist. If you call the 800# for SSA don't ask them a lot of questions they generally have no idea what they are talking about and frequently give wrong information. They are really only trained to answer basic questions and make appointments. Where I went through 3 years of training. Also there are a lot of commercials on TV claiming they will secure SSD benefits for you.... don't fall for it they just steal your money. You do not need anyone to help you apply given your diagnosis. The general # is 1-800-772-1213 you can tell them you want the number for your local field office. If you encounter any problems let me know and I can get the # based on your zip code. Best of luck to you on your journey. Aimee
Aimee, thank you for your sage advice and contact information for SSA. When I did it, I went to the local SSA office, and I agree with you -- there is no need to hire anybody to do this for us, it's pretty easy.
Aimee - can you tell me what happens when someone doesn't have enough "credits" to receive benefits? Not sure how many credits I lack. Stay at home Mom for the last 15 years. I'm assuming this means, I can't get SSDI for MBC now? Will I be eligible for any benefits come 62? Thank you for any info you have.
I know you asked Aimee, but just want to provide you the following: "Anyone can easily go to ssa.gov, create an account and you can get an estimate of what your SSDI monthly benefits would be" or what your monthly estimated SS benefits would be. If you create an account, they will have a list of all your earnings and how much (estimate) you would get if you qualify. If you don't have enough work credits, you then get SSI which is alot lower, but then you get medicaid for free health insurance, food stamps and other assistance.
If you have not worked in past 15 years you are likely not insured for SSDI but may qualify for SSI but that is a welfare based needs program that also takes into account your other income in household and resources. So depending on your spouse income, bank accts, property and vehicles you may not qualify. I would suggest you call your local office to ask more indepth questions.
This is from the SSA website to be insured for SSDI. "The number of work credits you need to qualify for disability benefits depends on your age when you become disabled. Generally, you need 40 credits, 20 of which were earned in the last 10 years ending with the year you become disabled."
Thank you so much for this information, Aimee. I had not found anything about the self-employment information. That saves me from even applying. I do make more than a living wage from my company, but would be unemployable by anyone else. As long as business is good here, I have no need to apply!
As far as filing (as help for others)---my brother moved in with us more than 15 years ago. (Fortunately, we transitioned him to semi-independence, so we don't have to deal with him in person any longer.) When he arrived, it was clear that he was disabled and could not return to the workforce. He had been unemployed for several years but had never pursued disability. Mind you, this was an executive level person with an international company and nobody even explained his options to him! Awful. Anyway, I took the project in hand and got him approved for SSDI on my first attempt. I was pretty proud of it! And, it has allowed him to survive and become somewhat independent from us (we still buy his groceries, etc., to stretch his meager funds). So, ladies, if you qualify---apply! You have paid into the system all of your working life for this benefit that you deserve. Follow the instructions EXACTLY on the online application. And good luck.
Didn't your brother realize or think to call Social Security if he was disabled. (Not being facetious, just curious). I assume most people know about SS disability. I am under the impression that they go by your 10 highest years of earnings so if he was an executive at a large international company, he should be getting more than "meager funds." Anyone can easily go to ssa.gov, create an account and you can get an estimate of what your SSDI monthly benefits would be.
The funds are meager. My husband, who is over 65 so on Social Security was a surgeon, paid a ton into the system, only receives about 25k per year. Soooooo, it is next to impossible to live off SSI.
I dont understand that. SSI is different from SSDI though. SSI is for say moms who stopped working years ago and do not have enough working credits to collect SSDI payments. I worked as a legal assistant in NY and now collect close to $29,000 a year for SSDI and I stopped working at 57 due to diagnosis. SSDI is federal so calculation remains the same no matter where you live while SSI can change depending on what state you live in. I do not understand how a legal assistant in NY can get more SSDI than a surgeon. It is based on the 10 most highest years of earnings. When it changes to social security, it will remain the same.
It's a long story, but my brother has bipolar disorder. One symptom was that he could not admit he was disabled. Even though he had not worked in many years and was unable to work, he could not connect the dots in his head. This occurred while he was working for hi last employer, so I really think they should have helped. Also complicating matters, his bipolar caused him to leave his wife and three children. Because he had a high-paying job at the time, he owed huge amounts in back child support in the end (which he was not paying because of the bipolar), so that continues to cut into his income, because it is deducted from him Social Security. Bottom line, he can be independent, but barely..
I'm sorry to hear that. At my last law firm, AFTER I was hired, I was told the partner was bipolar but that he was a lot better since he had changed his meds. The other two assts. told me he got so angry once he ripped the phone out of the wall. Even with these new meds he was on, every day I never knew who was coming in. Our "team" which included three associates would email me every single morning to find out what "mood" he was in.
It was like a different person every day. Either he was overly enthusiastic and cheerful and once made me and the three associates stay in his office to watch "mob flash videos" because he had decided that is what we were going to do for xmas and send to his international clients (I swear). OR, he would come in and shut the door to his office and I would not see him all day nor would the associates. OR, the angry one would come in. He would come to my desk with this look of anger and I knew he was looking to explode on someone and he would scream and yell about the most stupid things. He went berserk bc one of the attorneys had use the word "irregardless" in her correspondence.
Apparently, he had suffered with this for years and was worse before I was hired. It was hard for us and the attorneys and I would send them a letter "A" (meant he was in good mood), "B" meant he was not talking at all (he would not say good morning to them on those days) and "C" meant he was in a really bad mood. He was good enough at his job and I guess it affected the people he worked with more than the clients so he was able to work. Has to be hard.
Sad that if it had been caught earlier maybe medication would have helped him. Yeah, I forgot that with SSDI (which is protected by federal law), the only ones that can garnish SSDI payments is IRS, federal student loans and child support. It's unfortunate for him that they did not understand the reason why he failed to give support. I hope he has some kind of peace now and relief. Mental illness is hard to diagnose and the person who has it is unable to do so. He is lucky to have you for a sister.
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