Important info about SSDI eligibility for MBC

I just learned about this and it’s worth sharing. With MBC, you receive automatic Compassionate Care Allowance which expedites your receipt of SSDI. Typically receiving SSDI is a long process. But with MBC you can start collecting within two months assuming you aren’t working or choose to stop working. You are presumptively entitled to collect with a doctors note and don’t have to jump through as many hoops. I had no idea. I’m winding down my business and plan to apply right away. Sucks to have MBC but good Social Security created this exemption for us.

[mariootsi]

Thank you for the info. Would this be in addition to Social Security or instead of.

It's so confusing to me.

[laurac1014 in reply to mariootsi]

I think you get to keep which ever is larger.

[mariootsi in reply to laurac1014]

Thank you!

[Terilyn12]

Thank you for update !!! I applied on April 1 (last month) and waiting to hear. They sent me a packet to complete and I am guessing they just contact dr? I am hopeful to be approved so you give me great hope ♥️♥️♥️

[kearnan in reply to Terilyn12]

They require medical records to ensure that one has stage iv. I lucked out as my cancer center had a nurse navigator who took care of filling out the forms, and providing all the medical records that they requested.

[Buffwright]

I’ve been getting Social Security Disability (not SSDI) based on MBC since I was 63. The benefit was more than if I had taken SS at 63 and almost as much as if I waited til 66 (my “age” for retirement). This can be a great benefit if you’re younger than 63 since you also become eligible for Medicare in 2 years vs waiting til 65. Please note that you need to apply for SSD or SSDI while you’re still working. If you apply for SSD, it takes 5 months to get it. Sounds like SSDI is quicker. Having MBC makes you eligible for SSD(I)—there’s still paperwork, of course!

[Purple60 in reply to Buffwright]

Thanks for the info. How does one find information on these options? Is there a way of inquiring about the amount of SSDI before applying? I am currently working and make a very good salary but feel as though it is time to stop working and really enjoy life and do things that might be more fulfilling. I am though only 61 and so I have several years before Medicare and SS.

[Hidden in reply to Purple60]

Go to ssa.gov/compassionateallowa...

[Purple60 in reply to Hidden]

Thanks so much

[kearnan in reply to Purple60]

Create an online ssa.gov. account. There it will show you how much you have earned each year and an estimation of how much money you would get if you applied for SSDI at the present time.

[kearnan in reply to Buffwright]

I am not sure where you live but here in NY, you CANNOT be working when you apply for SSDI. If you are working while you apply, they are going to consider that you are able to work. VERY IMPORTANT. Also the first five months are UNPAID and you have to pay for your own health insurance.

[Purple60 in reply to kearnan]

Thanks so much! Very helpful. Yes I do live in NY. In thinking through it more I realize that I would prefer to not apply for SSDI but rather keep my consulting practice open. I can work as much or as little as I want and can earn a decent living. My biggest concern is health care insurance as I am only 61 and as such ineligible for Medicare. I understand however through NYS I qualify for Medicaid coverage that is not dependent upon one’s assets. So this may be the route I wind up taking. Many thanks Kearnan! 💜

[kearnan in reply to Purple60]

Believe me I am now a pro at this. In order to be able to get medicaid, you CANNOT have more than $859 coming in from SSDI or other venues of income. I was not working and I had NO MONEY coming in at all so I was able to get on medicaid bc I had no income. So I was on NY gov. marketplace medicaid which kept me on even after I started receiving SSDI but told me I would be kicked off in several months. the cancer center then was able to get me on the NY special medicaid for stage iv and pancreatic cancer. But I was told I would only be allowed to stay on that until I hit medicare. OMG...I hit medicare last month and it does not pay for hardly anything. So the social worker told me about a pooled trust spend down. Since I am getting $2,400 a month and am obviously over the limit for $859 I have to put all that excess money into a pooled trust (in my case The Center for Disability Rights) and they keep my money in a trust. They will pay my rent, Verizon bill and credit card (but they have certain things you cannot buy, alcohol, cigs, gift cards, etc.). This will be for life. As a matter of fact they just took out $1,500 today (I put down the 15th of every month for them to take my money). I could not even afford my medicare copay for my med which was over $2,000 a month. So I had, with the help of the Cancer center attorney, fill out all these documents and was in the trust. You also cannot have more than $15,000 in the bank to qualify. I do not. It was so so stressful. You have to go to medicaid first, apply and obviously be turned down and then they will send you a spend down letter letting you know you are denied bc say you are $1,4000 over the limit. You need to do this BEFORE joining the trust. All my documents are now done and my attorney let me know that she submitted to Medicaid. They have to approve my trust and if they do, my spend down will be zero. I will then have Medicare as my primary and Medicaid as my secondary. Medicaid will pay my Medicare premiums (which are now being docked) of $135.50 for Plan B and $37.90 for Plan D. On top of that, they will pay all copayments and deductibles that Medicare does not pay. It is a very stressful thing for me because of the paperwork and fear that I could not longer afford Medical. The medicaid unit that approves pooled trust spend downs now has my trust documents and now I have to wait for that glorious letter stating that I am approved and I will get back my free car service to any doctors appts. PLUS they will pay for what Medicare does not cover which is alot. So now, I am on the edge just waiting for that letter. Medicaid realizes that most people cannot live on $859 a month so the pooled trust spend down is the only way for me to go. I hate that someone else has control over my money but I have no choice. This has been so stressful and I just want that letter in my hand and then all will be well again.

[Purple60 in reply to kearnan]

Thanks again. You shared quite a bit of info and seem frustrated...rightfully so. I am working with my institutional social worker and will update you. Of course we all have different circumstances and so we’ll have to see what I am ultimately eligible for. I admire you for your strength in working through it and hopefully you are getting you medical care taken care of. I would be frustrated also to have a governmental agency manage my money and tell me how I can and cannot spend it. I am very sorry to hear you are in this situation. Please try to manage any stress...you need to protect your health. 💜

[kearnan in reply to Purple60]

I could not pay for last months prescription of Verzenio. Medicare expected me to pay $2,500 every month and that is not counting CT scans and onco appts. My onco was useless and the social worker was trying to get me a free month supply. She was having trouble bc most pharma companies will NOT help with free meds if you are on medicaid or medicare. I went on the Lillycares.com which is the pharma company that makes verzenio. I looked and read their requirements which surprising you had to be on Medicare and also have picked a Medicare Plan D (rx) which I had. I filled out my portion of the form and emailed to my onco's secretary to plead with her to please have Dr. B just check off on the last page and sign her name. No PA and no rubber stamp. The secretary then faxed it to the number. I waited two days and then called Lilly Cares and found out I was approved until the end of 2019 and they would be sending my meds for free. At this time, I did not know that my onco was able to get me a free month so when she called me at home and I told her well I am getting it free from Lilly Co. itself, she was amazed and kind of hurt I think bc she said I was trying so hard to get it for you. I said I know that but I have to be my own advocate. Lilly also told me if I am approved by Medicaid for the spend down (my spend down was $1,387 but I am putting in $1,550) so I should qualify. I also called the medicaid spend down unit supervisor (which I am not supposed to do) and was a wreck bc I thought it this fails, I am stopping all treatment. I cannot live like this. August was a horror of a month. Just going to Coney Island medicaid, you sit for hours, most of the workers are so rude but I had to apply and be denied and told how much my spend down would be. So the supervisor knew I was close to a breakdown. I had paid nothing with medicaid and now was overwhelmed with Medicare since they hardly pay for anything and you have high deductibles. She told me to tell the attorney (who instead of mailing them goes in person to file it with Medicaid) to let her know when she was dropping off my Trust documents and (I called the supervisor several times and I was always stressed and upset) and this supervisor said she could approve it within a week. Sometimes you have to wait. So Medicaid approved me for a spend down starting August 1st but I have not been approved by Medicaid for the extra help yet. But they will pay for three months' prior of any unpaid bills and eventually will reimburse me for the Medicare payments taken out. I'm not lying..I almost had a heart attack over this with all the forms and such but if approved, I will be set for life. I will have Medicare and FULL Medicaid. I will get my free car service back, and whatever Medicare does not pay, Medicaid will. I hate that this trust place has my money. They are never allowed to give me any money directly. They only pay the vendors. I set it up so that they will pay my rent for a year automatically. Today I send them my credit card bill. You can even go on vacation. The point is the money has to be spent on ME and for ME only. You cannot buy presents for other people but not sure how they know if I order something if its for me and for someone else. This is my first month and its tough. But I am anxiously awaiting this letter. My close friends know how stressed out this whole process has been so now I await the decision. Odd though that Pfizer which makes Ibrance refuses to give any help to anyone on Medicaid or Medicare. They only help women who have private insurance and high copays and yet Lilly is giving it to me for free until end of 2019. Of course, if I get the approval letter before then (which I expect), I have to call them and let them know. It's a horrible maze but I am almost at the finish line.

[kearnan in reply to Purple60]

You are allowed to work on SSDI up to $800 per month. Not a penny more or they will cut you off. but you can earn that much.

[Hidden]

Hi Marthasvinyard,

Thank you for sharing this important info. I went out on disability almost immediately after being diagnosed metastatic. The SSDI is great, and higher than my SSI retirement would have been, had I forgone the disability and just waited to take the retirement. AND, from what I've read, that bump carries through even after you reach retirement age (god willing!)...So I'm very happy that they have this policy... Lynn

[Kelly001]

I have my ins. Through the Breast & Cervic program in the state of Ga. But I would like to know if I were to be awarded my SSDI would I be able to keep my current Insurance?? Does anyone have any info. About this. I have talked to SSA, Local Health Dept. And American Cancer Society and noone can tell me. I am still working some. Hours way below the SGA. The meds. Are really taking my strength from me. I was dx with Stage 4/ Liver Mets March 2018.

Meds is: Falsodex/Ibrance

Stage 1 Dx: May 2002

Stage 1 again: Oct. 2008- took Tamoxifen for 10 years

Stage 4/ Liver Mets/ March 2018

[Buffwright in reply to Kelly001]

I retired and am receiving SSD, and have been on retiree insurance which was available to me through my employer til I turn 65. As a retiree, I had to pay more ($880/mo vs $54!). I’ve been glad of it, since my meds and other copays will cost almost 50% more on Medicare.

[kearnan in reply to Kelly001]

I would think but you need to check with your State's social services. Because when I was diagnosed, I was in between jobs and I had no income coming in. So I was put on nygov marketplace and I did not pay a penny. After five months, my SSDI kicked in and I called nygov marketplace bc I assumed I would lose it because I was earning too much with SSDI. They said no, we keep you on it until open enrollment so I was on for another couple of months and then it was going to end. I panicked until I found out from the cancer center social worker, that they would easily get me on the NY breast and pancreatic cancer medicaid and I was put on that and stayed on that until Medicare kicked in. So I would imagine you would still be able to be on that insurance UNTIL you are forced on to Medicare. And Medicare is CRAP.

[kearnan in reply to Kelly001]

I believe you should continue to get UNTIL you are on two years of SSDI and then forced onto Medicare. I was on that special stage iv in NY which ended the day before I was forced to go onto Medicare.

[kearnan]

You do realize obviously that first you have to be NOT working when applying and that you do not get paid for the first five months (unpaid waiting period) and you actually start receiving it on the sixth month. So you have to worry about having health insurance and enough money to live on bc SSDI you do not get any money, even when accepted as stage iv is automatic, for five months. That causes alot of people financial ruin.

[Hidden in reply to kearnan]

With Compassionate Care Allowance, your application is approved quickly and benefits begin within 90 days. My experience mirrors what the Social Security timelines state. I just printed out my report with the diagnosis and sent it in. You commit that you’re not working. In my case I expect a significant payout in November on a deal I closed in June. They assured me that’s not an issue. They understand people receive belated commissions etc.

[kearnan in reply to Hidden]

SSDI is federal and the same for all. There is a mandatory five month unpaid period. Like you, when I filed it was under compassionate allowance. All that meant is that I was approved within two weeks. But I still had a five month unpaid waiting period. Because I waited for almost a year before filing since I was being treated first at another center and had no assistance (the nurse navigator at my new cancer center did all the work, gathered all my records.) I had NOT been working since first diagnosed, but SSDI moved my date of Disability to a year ahead of when I filed. So they counted the five UNPAID months first, and then gave me back pay for the rest of the time I was not working. That was an unexpected bonus. The Benefit period may start but you do NOT receive any benefits UNLESS you waited a year or so before even applying. Stage iv or not, everybody has to have the five month unpaid waiting period. People should check first. All one has to do is call SSDI. There is a five month unpaid waiting period for all. Nobody gets SSDI after they file even with compassionate allowance within 90 days. Unless you were diagnosed 9 months before you applied and SSDI moved your date of disability back some months, then they would still first dock the five unpaid waiting months and then pay you after that. People need to look carefully and call SSDI because misinformation is sometimes unknowingly provided. This is from the SSDI website:

"Does Social Security disability have a 5 month waiting period?

If you are granted Social Security Disability, the Social Security Administration will hold your first 5 months of benefits. This rule only applies to SSDI, not SSI. ... The five-month Social Security Disability Waiting period starts when the SSA determines you became disabled. This is often referred to as an onset date. Jan 20, 2018

[hopenowandtomorrow in reply to kearnan]

This is also how it worked for me. I was diagnosed 4/2019. Submitted my application in early May. Got approved under compassionate care’s expedited approval time. My approval came in May. I am on the 5 month wait for the first payment to start in October (the actual check comes in Nov).

[kearnan in reply to hopenowandtomorrow]

I did not even apply until about a year a half after I was diagnosed. I seen the paperwork and thought can't deal with this so I did not apply right away. At my second cancer center (my savings was running) out she had me sign something, filled out all the paperwork and all the medical records under a compassionate allowance. So even though approved under that compassionate allowance, there is still an unpaid five month waiting period. What shocked me is that I assumed SSDI would go by the day you applied. But they did not. They actually went back a year and a half from the first day I was told I had breast cancer. They docked me for the five unpaid waiting months and gave me backpay of $25,000 for the months I had cancer and was not receiving SSDI. I was out of work when diagnosed (my choice but had interviews the following week when I was diagnosed). I even tried working before I went to second cancer center but lasted at one job for three months and another for one month. SSDI did not hold that against me as they considered it a failed attempt. (If I had stayed for six months, they would have held that against me.) So getting that $25,000 was something I was stunned by and happy by since my savings was almost down to nothing. I actually got the backpay before my first payment bc I never collected long term disability nor did I ever use a lawyer. Even at tax time, I owed nothing because half of that SSDI was for months in 2017 and half for 2018.

[hopenowandtomorrow in reply to kearnan]

That is great to know about the back pay. Thank you for sharing!

❤️🙏❤️

[kearnan in reply to Hidden]

Well of course they would not count that against you as it was for work you had done before you stopped working. You cannot be working though when you apply for SSDI.

[Kelly001 in reply to kearnan]

I am working very little at this point. I am nowhere the SGA limit.