Looking for guidance, direction & support - Patient w/ 2nd Diagnosis of XXX Neg Breast Cancer & painful Lymphedema

[ShebaLuv77]

Hello my name is ShebaLuv77 and I am reaching out to find resources that can assist in paying my rent which is over $1500. I am a divorced mother of two grown daughters who do not live with me. My only income is SSDI of $2100. I only have Medicare so it is hard for me to be able to get the exceptional care and services I need without a Medicaid card. I was told my income is too high to get Medicaid unless I file for surplus income. I have applied over 3 times only to be told I did it incorrectly. At this time I am desperately searching for a Lymphedema Specialist close to Harlem where I live, and I am really in need of the sleeve for my arm because I stay in so much pain after the removal of lymph nodes and Breast Surgery. Any help or guidance will be much appreciated.

[hdhonda]

Sheba, I am so sorry you are having so many financial difficulties while dealing with MBC. We welcome you to the board. I don't know anything about how to get the insurance you need. There is a member here from Brooklyn that is on Medicare and Medicaid. Hopefully, she will see this and give you some guidance. I wish you the very best. Blessings Hannah

[Hidden in reply to hdhonda]

That be me and I just responded to her. But even so, if she is only getting $2,100 then she needs to find a cheaper apartment if she is paying over $1,500.

[Hidden]

Hi ShebaLuv77....I'm so sorry for what you're going through! I don't have any specific knowledge that would help you, but is there a social worker at your hospital who can help guide you? Best wishes, Lynn

[ShebaLuv77 in reply to Hidden]

Hello LynnFish, thank you for replying to my post. I left a message for a social worker on friday hopefully she will call be back on Monday.

[Hidden in reply to ShebaLuv77]

Perfect! We can google all day, but these folks presumably have the expertise that can fast track things! Good luck with it!

[Nmartinez15]

I hear that you need to put your rent portion on a trust fund or something like that and then you will be able to apply for medicaid. Also, if you go to cancer society.org they have alot Grant's for people low income. You can also call them. I make less than you, but my husband works so I didn't qualify. However since you are alone they maybe can help you with some Grant's money.

[ShebaLuv77 in reply to Nmartinez15]

thank you for the response to my post and info you supplied.

[Hidden]

First, if you are only getting $2,100 a month in SSDI then you need to find a cheaper apartment bc you are going to be struggling the entire time. There are not many charities that will help you pay your rent going forward. They may help with a one-time payment of rent but they will not continue to help you pay your rent.

I did the pooled trust spend down that you mention so I now have Medicare as my primary in addition to full Medicaid as my secondary insurance. Medicaid now pays the Medicare premium of both Plan B (about $144.00) and my Plan D (rx) $40.00 for me.

I was lucky enough to get the help of an attorney from NYLAG in New York City. They have an attorney come once a week to assist people at the Cancer Center I go to. She had told me she had does about 500 of them a month at different cancer centers. Without her help, I would have not been able to do it by myself because filling out the paperwork was a bit confusing.

Basically, in NY you are only allowed to keep (I think for 2020) its $879.00 a month for yourself. Anything over that and you would not be able to get medicaid. The excess of what you over that needs to be put in a pooled trust spend down (which a non-profit organization handles). With me its the Center for Disability Rights (CDR) in Rochester, New York.

If you go to the CDR website, they have information, what you need to join and other information. But I think you will need help with the paperwork to fill out the trust documents so if you have a social worker at your cancer center, she may be able to help you.

First thing required is you have to go to social services and apply for Medicaid. You will be turned down but you will get what they call a spend down letter telling you how much you are over the limit (this letter is important). You then have to fill out trust documents and have them sent to CDR (there is a one-time fee of $300 but if you cannot afford that at once, they will let you do in monthly installments.) CDR after that only charges $20 a month for four withdrawals. I have set it up so that they automatically pay my rent which is $1,325.00 (but includes gas and electric), I scan them my Verizon/internet bill which is about $95 per month and the rest I put toward my credit card.

They automatically deduct $1,565.00 a month from my SSDI on the 15th of each month (I get $2,440 per month) but again I am only paying $1,325.00 for rent and gas and electric are included. Either call Center for Disability Rights in Rochester, NY (For account information or questions, call 585-546-7560 or email [e-mail]).

I had been forced onto Medicare in August 2019 when Medicaid stopped and Medicare then took over and then my deductions started also. But I was in the process of doing the pooled trust spend down. From start to finish (with the attorneys help, of course), the paperwork was first submitted to CDR. Then once they accepted me, all that paperwork has to be submitted to Medicaid for their approval. Medicaid DOES NOT count the money that is put in the trust spend down so it leaves me with $870 each month which is below the $879 required to also get Medicaid as a secondary insurance.

See if the cancer center you go to, has someone there to help with these pooled trusts or possibly call NYLAG in downtown Manhattan to see if someone can help you. If not, I am sure if you call CDR they will send you the trust documents. It was a very stressful time but from start to finish took about three months before I got approved. Of course, now being on Medicare, I was getting bills. As the attorney said do not pay them because Medicaid will pay any back bills for 90 days. So when I was approved, Medicaid back-tracked my effective date as of 8/1/2019 (which is why my Medicaid stopped and Medicare started) and they paid all my bills and then within the next month they refunded me the money I was paying for Medicare premiums.

The only issue is now that if you are getting $2,100 you cannot really afford an apt. that cost more than $1,500. The best thing to do is start looking for a cheaper apartment. That is way too expensive, even for me to pay.

I feel so much less stress now. Whatever Medicare does not pay, Medicaid does plus since I have full Medicare (I dont drive and live in Brooklyn), I get free car service to and from all doctors appointments. Feel free to ask any questions you may have but the most important thing is to seriously look for a cheaper apartment.

[ShebaLuv77 in reply to Hidden]

Thank you for responding to my post and the info you supplied it was so very helpful. Now I know what I am up against, thanks so much.

[SeattleMom in reply to Hidden]

WOW! What a great, informative reply you provided to ShebaLuv! You are an angel on earth!! XXOO Linda

[mariootsi]

I would say speak to a social worker at your cancer center. They may know of resources available.

I also think Cancer Care is an organization that can help financially. Worth a try.

There are also legal organizations that serve as advocates for cancer patients.

[ShebaLuv77 in reply to mariootsi]

Thank you for your response. Can you give me the names of those organizations as I have applied for the surplus plan 2 times and was denied. I really need help with this.

[mariootsi in reply to ShebaLuv77]

There are many organizations. There is the Cancer Legal Resource Center, 866-843-2572, National Cancer Legal Services Network, ncisn.org, NCLSN.org, The American Cancer Society can give you suggestions, The Cancer Financial Assistance Coalition, and The Disability Rights Legal Center.

Hope these help! Good luck.