Does anyone know about SSDI and is th... - SHARE Metastatic ...

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Does anyone know about SSDI and is there additional benefits for children under 18?

klhowe profile image

Hi, I'm considering applying for SSDI. I know that our diagnosis of MBC makes it very easy. Does anyone know what the amounts are like and if there is additional benefits if you have children under 18? 3 of my 4 kids are under 18.

I'm a physical therapist. My latest bone scan showed a healing rib fracture I didn't know about. And my hands are really affected by the Femara. I have a really hard time doing massages.

Would appreciate any feedback.


29 Replies

Sorry no but how are you coping with your kids? Are you able to function normally? I have 2 small children and I have just fallen apart x

I'm so sorry you are feeling like you are falling apart. Look at your children and know you will be around a long time for them! The new drugs are coming quickly to keep us going! Have faith! I wish you well. This bad day will pass as they always do and tomorrow will be brighter!

I haven’t had a good day for a very long time. I’m struggling to believe in the new normal. It’s so beautiful today and I’m so depressed I can’t find the joy in it. Normally I’d be out in the garden. I can’t even use the mower. Thanks for trying to cheer me up x

It takes a while to come around with this mbc. You will have better days. 🙏🏻🙏🏻I don’t know about other states but SSD is quickly approved for mbc- problem is you still have to wait the six months. In the interim you can get short term disability from the state but here in NY it pays $170.00 a week. It is not easy without savings or employer based short term disability plans.

Hoping you can find a way. First 🙏🏻🙏🏻🙏🏻🙏🏻To lift you up💕💕



Francesca no you have zero waiting period for MBC ladies to receive SSDI! Its automatic and retroactive for one year! Including dependent children under 18

Didn’t know all this! Thank you so much😘

Oh Ellie I'm so sorry. Honestly though I certainly couldn't use the mower's too hard for me to push and I'm always scared of another fracture but that doesn't mean you can't get outside and enjoy the sunshine and beautiful day. Sit is in a chair, read a book, listen to uplifting music, watch the birds ...whatever works for you. This is a hard journey and we all have our bad days. I truly hope you feel better soon.


I initially fell apart. So, my husband and my two boys got angry and my 2 girls got sad.

I educated myself about my cancer and the treatments. I had my ovaries taken out. I make sure I'm alkaline. So, now if I'm good, everyone else in the house is good.

It's really hard, when I'm alone and my mind wanders is the worst time. But, I have too much to live for. The Ibrance will work and I will reach NED!

The answer is yes. If a mother or father goes on SSDI, and they have children under 18, they are entitled to benefits. My friend who has a 16 year old daughter and is separated from her father (they never married). Well he is on SSDI now and my friend receives $680 a month for her 16 year old daughter until she is 18 or if she goes to college 21.

My disability was based on my work history for Social Security just like if I were to retire. I don’t know about the children though I’m curious to find out?

Karen if you have children under 18 they are eligible for SSDI children benefits as well! Call your nearest SS office!

For MBC ladies, these are facts:

1- no wait period!

2- dependents under 18 also receive SSDI till 18

3- if your diagnosis is over a year you will receive backpay to a year

4- each persons earnings are different, go online immediately and file for benefits, you will have money within 3 months!

klhowe profile image
klhowe in reply to Livinthedream

Thank you. I applied for myself. Haven't figured out yet how to apply for the kids.

Livinthedream profile image
Livinthedream in reply to klhowe

Honey just call the 800# and ask they will tell you what you need to do! Best of luck to you! If i can help you out with anything else pls let me know.

kearnan profile image
kearnan in reply to klhowe

You have to go down to social security office (make an appt. first bc my friend went down and was sent away bc she had no appt.) and ask them what you need to bring, birth certificates, etc.

The true facts are that yes there is a five month unpaid waiting period. That is a fact. Nobody escapes that. The compassionate allowance only gives us approval quicker but there is still an unpaid five month waiting period.

Back pay: You will ONLY receive back pay if you have not been working the entire time since you were first diagnosed. If you were diagnosed two years ago but continued to work full-time SSDI will not count that period because if you were working and getting paid then you were disabled so they are not going to give you additional money on top of the money you made when working.

This is why people really need to call their social security office rather than a forum board bc too much misinformation is given. The social security office can answer your questions. But the above facts is that you cannot get benefits in three months. You have to wait five months for the unpaid waiting period. And it doesn't' matter. If you were working full-time when you were diagnosed, you DO NOT get backpay. It would start from when you stopped working.

I know this because I recently went through all this. People need to rely on calling their local social security office bc too much misinformation is provided or people get confused and put down the wrong facts.

LOL...just realized that was asked 6 months ago.

I applied for SSD in October 2018, was approved November. My first check was December 2018. I do not have children so I can’t help you there. The process was not long at all. Just make an appointment to go in person, or I believe you can do it on line. Good luck.

kearnan profile image
kearnan in reply to Audrey06

When were you diagnosed though? EVERYBODY, even stage iv breast cancer patients, have a five month unpaid waiting period. If SSDI moved your EOD back because you had stage iv previously month earlier and were NOT working, they would still count the five unpaid months first before paying out. That is a fact.

I know that with this diagnosis SS would be approved but do the medications come from Medicare, or do you have to buy health insurance? How much will that cost you?

I don't know if I would be comfortable depending on getting my medications through grants if you can find them.

Medicare hospitalization is free if you have no other medical coverage you can get medicare part B and supplemental medical insurance!

If your below poverty level you can get reduced prescriptions thru medicare called extra help and wont pay over 6.00 per prescription.

I hope this will work out in the future if I should need it.

It will work and if you have sny questions let me know and i will help you!

klhowe profile image
klhowe in reply to laurac1014

I have health coverage through Covered CA. I'm only 50. I would rather keep the private insurance as long as I can, Medicare doesn't sound good for all my medications.

kearnan profile image
kearnan in reply to laurac1014

I am on Medicare now. Just started in August 2019. I had been on Medicaid before that which paid for everything, even free car service. Medicare to me is awful. They have deductibles and copayments. Plan B is $135.50 and you have to put an rx plan. With Medicare they want you to have "skin in the game" meaning you are responsible for copayments.

So I just found that that my medicare plan D expects me to pay $2,437.00 a month towards the price of Verzenio until I reach $10,000. I could not afford to do that. So for Verzenio (not Ibrance which is made by Pfizer and will not help any women that are on medicaid or medicare). Verzenio is made by Lilly another company. (I am waiting to get approval on medicaid so that I will have dual coverage going forward with Medicare as my primary and Medicaid paying for anything (including my Medicare premiums that are being deducted from my SSDI now) so that it won't cost me anything as this is for life.

But I could not afford the co-payment. So I did some research, went on the Lilly Cares site and seen that if I have Medicare and a Medicare Plan D Plan (which I do now), Lilly Cares helps. They emailed me the form which is pretty easy to fill out, I emailed to my onco who checked off a few boxes and signed her name and then it was faxed to them and I was approved in three days. So for now Lilly is giving me my Verzenio for FREE until the end of 2019. All my trust documents are now in the Medicaid pooled trust spend down department and I expect to get my approval soon at which time I have to notify Lilly bc then Medicaid would pay that $2,437.00 a month for me and it won't cost me a penny.

Even the social worker at the hospital called to tell me she tried hard but was only able to get me ONE free month. I said well you told me you had been trying but it was hard and I told her I got Lilly to give me it for free until the end of the year. I think she was a bit upset that she had been trying so hard (she told me she even tried calling her on days off) that on my own, I was able to get a few months for free.

You have to do some work and see what is out there. You will be surprised.

Hmmm...when I called I did not qualify for one of the benefits because my husband is working, but they said I would qualify for another benefit given my work history. I was also told that a lot of people were living a long time with what I have and I was concerned I would not get it. Then I started getting a lot of calls from agencies and attorneys to help me apply. I also received a letter with a portion of my retirement and asked if I was aware I had it. Sheesh! They sent me questionnaires asking me what I was capable of doing such as how much I could lift, if I cooked and shopped and how many hours a day. I applied in December and was just approved a couple of days ago. When I look online it shows my first payment will be deposited May 15th. If this is supposed to be retroactive, what did you do to get that? Thanks.

kearnan profile image
kearnan in reply to Mets1

Five month unpaid waiting period. Doesn't matter if you are stage iv. You get approved quicker but the clock starts ticking and you have have five months unpaid.

I did not get retroactive. You have to be unable to work. Then a 5 month waiting period. I applied last month. Was approved in 3 weeks, but will start payments in June because I initially filed temporary disability in December.

I've applied for my kids that are under 18, so they will get benefits also. Husband makes too much, otherwise he could get something as well to care for our kids under 16 years old.

It's a lot to figure out. I'm bummed that I dont get retroactive benefits.

kearnan profile image
kearnan in reply to klhowe

Well that makes sense. Of course if you were working during a period that you had stage iv, they are not going to let anyone double dip meaning you got paid when working with stage iv (and thus were not disabled). So they are not going to let you have collected the pay you made while working and then on top of that, give you SSDI money on top of the money you were earning.

You ONLY get retroactive like me if you did not apply until a year and a half later after your diagnosis. I did even try working but one job lasted only three months and one for one month. When my new cancer center just made me sign and paper and got records from the first hospital and she took care of sending them everything. I did nothing but sign my name. I assumed my SSDI would start from the application date that the second cancer center filed it for me. But no.

SSDI changed my Effective Onset Date (EOD) to the first day I was diagnosed at the first hospital a year and a half later. Even though I worked briefly after that, SSDI considered it a failed attempt since I was not at either job for more than six months. If so, they would not have considered me disabled during that time. So they went back to the beginning of February 2017, docked me for the first five UNPAID months and then paid me $25,000 in back pay for all those months when I was not working and using my own savings.

This is why you should call your Social Security office and get the proper information rather than through a forum board. The answer is YES. If you get SSDI and have children under 19 years ago age, you can also get additional SSDI benefits for them. My friend has a 15 year old daughter. She split with her daughter's father. He is now on SSDI and besides being able to put her on Medicaid (which she refuses bc she pays for private insurance for her through work), she went down to Social Security office (you need to make an appt. first) and bc her ex (and they were not married) is on SSDI, she now gets $680 a month for her daughter who lives with her. This is straight from the SSDI site. People just need to take the time and call the right departments to get the information they need rather than ask on a forum board where you are being told No, you cannot get benefits for your younger children.

How much does a child get if a parent is on disability?

Generally, your child will receive up to 50% of your total SSDI benefit. It is important to note that there is a maximum amount that a family can receive based on one disabled individual's benefits. The family limit is usually 150% - 180% of the SSDI benefit awarded to the disabled individual.

BE AWARE THOUGH THAT THE FIRST FIVE MONTHS ARE UNPAID. So you need to have enough money for insurance and to live for five months. Even though we get approved quickly bc of mbc, there is still a five month unpaid waiting period.

Create a account online and it will show all the money you made over the years and give you an estimate of what you would expect to receive if disabled.

This is all information you can find by calling Social Security, visiting their offices or going online to the site. Sometimes one needs to do their own leg work and phone calls to be proactive.

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