After learning that MediCARE was not going to be anything like MediCAID, I was panicked. I had to go to on mediCARE August of this year. They immediately started deducting $135.50 for Plan B and I had to pick a Plan D (rx) which is $37.90 per month and seeing that now I would have deductibles, and co-payments (Plan D expected me to pay $2,437.00 a month for several months for my meds. After speaking with the social worker there, I had to join a pooled trust spend down. With medicaid I paid for nothing, got free car service to and from all doctor appts., not just for the cancer center, dental and vision also. Then came MedicARE, immediately lost my transportation (I dont drive and I have nobody to drive me and its bus and a train) and that I had deductibles for everything. So since I made too much on SSDI to qualify, and at the advice of the social worker, I joined the pooled trust fund. The hospital has an attorney that comes every Friday and helps people do these. She said she does about 300 a month! So I had to apply for medicaid, be denied, and in the letter they would state how much excess I was over the limit.
After I did all the paperwork and the Center for Disability Rights (who would be handling my money) approved me and starting deducting the excess (plus I put some more in), they take it out immediately and they pay my rent, verizon bill and credit card and only charge $20 a month for four withdrawals.
Medicaid does not count any money that is put in the pooled trust. The pooled trust will never give me any money directly and will only pay third party vendors. These trust and joinder agreement documents then had to be submitted to the Medicaid office that handles pooled trust spend downs. It was extremely stressful. I had bills coming in bc of Medicare but was told not to pay them by the attorney since Medicaid will pay for the three prior months.
I waited two months for this decision and finally on Friday, Medicaid approved it and in addition to MediCARE, I will also now have FULL MEDICAID. Thank you God. The stress of all the forms, going back and forth to Medicaid office is finally over.
Once you are approved for full medicaid as my secondary insurer, not only will Medicaid pay now, going forward, my Medicare Premiums of $135.50 and $37.90, they will pay all deductibles and co-payments for whatever Medicare does not pay for which I found is alot.
Since I put more money into the trust than I needed to, I did so because once Medicaid (this upcoming month) starts paying my medicare premiums, I will now have $850.00 to myself (still under the limit in NY where you can only be getting $859) a month so I put in more so that when approved, I would not have to adjust and fill out more paperwork for the trust to take out. I can NEVER have more than $859 in a given month otherwise I will not qualify for Medicaid so even when they start paying my premiums, I will be at $850 and the other money that is handled by the non-profit for me has been paying my rent, I scan them my Verizon/internet bill, and then also take $20 a month and I scan them my credit card with whatever money is left in my trust for that month to pay.
I did see now that for 2020, SSDI is doing a cost of living increase which will come out to $24.00 a month so I will have to increase the money I put in the trust by $24.00 so that I am not over the limit.
Now, I do not have to worry, about anything because I get my car service back, if I need hospital or full-nurse or an aide or God forbid, hospice, Medicaid will take care of it. Whatever Medicare does not cover, Medicaid will. Finally, I can relax and know that going forward until the end, I have total medical coverage, including dental and vision. Dual coverage of having medicare/medicaid is better than most insurances and supplements that most people purchase. It was a long and totally stressful time, but it's over and I got approved and they backdated my approval to August 1 (when I had to start medicaid) and eventually they will reimburse me for the money I paid for Medicare premiums (but that can take months so I am fine with that).
First piece of good news I have had in a long long time.
Written by
kearnan
To view profiles and participate in discussions please or .
Thank you. The stress (I only get SSDI, have no family and no other income) of being expected to lay out so much money, I was afraid my life would be barely making it from one month to another. Now, at least, I can relax a bit. I have been so so stressed about this and finally it's over.
I’m glad for you. It doesn’t seem fair that we have to jump thru hoops and surrender control and “hide” every dollar not fair that you get better benefits if you’re broke. Not that I begrudge anyone help. There should be an easier, more equitable system when you’re dealing with a catastrophic illness.
First misconception. You do NOT have to be broke. You can own a home (I don't) have two cars (I do not drive). You do have to allow a non-profit to take the excess money that prohibits you from getting medicaid as a secondary insurance and going forward let the non-profit handle it for you and pay your bills for you. People need to do research and some work on their own but anybody can do a pooled trust spend down. It's giving over control of your money but they do not spend it on anything else. It can ONLY go to pay my bills. I am not allowed to buy gifts for others on my credit card, no alcohol, cigs. If I go to a restaurant, I can only pay for myself, not for another person. So if you wanted extra financial help, you could get it also.
I was not thrilled as I have been supporting myself and living alone since 18 about giving up control of a large portion of my money for the rest of my life. But so far it seems to be working out, okay. They automatically pay my rent as a reoccurring payment and I just scan them my Verizon/internet and credit card bill (to the amount that is left over). They will even pay your mortgage, car insurance (I dont drive). There are some things you cannot purchase on say a credit card that they will not pay or will deduct. You cannot buy alcohol so even if out to dinner and you order a drink and it's on the bill, they will not pay it. You cannot buy gift cards because they assume people will try and sell them. You can even go on vacation and buy clothes on your card. It is my money from my SSDI, but I have to hand over the portion of it that would make me ineligible for medicaid. Medicaid does not count the money in the trust towards as part of your income. I am in treatment for life, I do not have $2,437 a month laying around for my meds, a $1,500 deductible for hospital and Medicare only pays for 30 days in a co, Co payments and such. The most helpful thing is the car service which takes me to and from all doctor appointments bc I do not drive and have nobody to drive me and it is not close to where I live. So I had to let go of that control and realize I have this for life and I need the financial help with the medical. It was just such a long and stressful process.
Medicaid created this process of not counting the money put in trust SPECIFICALLY for people with chronic illnesses that are in treatment for life and which bankrupts people. They realize that people cannot afford to live and also pay these huge medical bills. So it is up to each person to decide if they are willing to give control over to a non profit to handle their excess money and pay their bills. It does not matter how much you have as long as you (in NY) are not getting more than $859 coming to you.
I actually did not qualify for medicaid because of what I get from SSDI. I know people who own homes and have much more money than I do (IRAs, several cars) and they also can do trusts, but there are different kinds. So I realized that with Medicare, I needed the protection of medicaid as dual coverage. So I did what I had to do even though it took some getting used to. The non profit (in my case, its the Center for Disability Rights) that now deducts that excess money every month and they only charge $20 a month to do four withdrawals. They will ONLY send checks to the third party vendor.
So, if you feel you are not getting the help that POOR are getting, you can if you are willing to do the paperwork and let a non profit handle paying your bills for you. You have to be willing to do the paperwork, and give up control of a large portion of your money so if you are willing to do that, you too could be eligible.
Thanks for the detailed response. I didn’t mean to be offensive and thought about not posting this because it could be interpreted as being mean spirited, which I don’t intend. It is just frustrating that there isn’t an easier way to do all this. Being in care for life can spend down most people’s money, including mine. I am researching what I’ll need when I quit work. It is some work to figure out the right drug plan especially. Glad it’s working for you
My social worker (bc I had no idea what plan to pick for Plan D for rxs) told me what plan to pick. She mistakenly assumed that bc I had done the trust documents and given them to the attorney that I was immediately getting Medicaid in addition to Medicare. So she told me what plan to pick, they started charging $37.90 a month and then I found out that I was expected to pay $2,437.00 a month towards my meds even with this plan D until I reached some $10,000 limit or such EVERY YEAR. I could not financially do that and I imagine most people can't. As a single person, I cannot have more than $15,000 in savings which I don't because with SSDI, the first five months are UNPAID so there went my savings at the time. I stupidly thought Medicare was going to be just liked Medicaid (its a horrible maze to go through) and then obviously found out it was nothing like Medicaid.
Now, I feel stuck here. Because I have to stay and live in NY. Medicare is federal, Medicaid is state. So now that I have this all set up, I have to stay in NY. If I wanted to move elsewhere, I would lose the NY medicaid and then have to start all over in another State.
It would be hard for me to move from my rented apartment because I would have to explain to a new landlord (I Have been in this apt. for 25 years) that Oh, I won;'t be paying you, you will be getting a check from a non-profit.
Medicare does not pay for a home aide if you need help, hospice or transportation. They only pay for 30 days in a hospital (a $1,300 deductible first) and anything after 30 days in a year, you are responsible for paying. Who can do that?
So when I found out that I was expected to pay the $2,437 a month to get my drugs, I called the social worker and she said you will not have to pay anything bc you have Medicaid now. I said No....I was just accepted by the non-profit to do the trust. They have to send all the documents and agreements I signed back to the attorney. She then hand delivers them to Medicaid (and get a receipt) bc she knows NY medicaid and does not feel comfortable mailing all those documents and then you have to wait for Medicaid to decide whether or not you qualify.
Its just that people do not realize there are options. I put in more money than I needed to in the trust (they do automatic withdrawal every month) bc I knew if accepted, Medicaid would start paying my Medicare premiums and I would be over the limit and would have to put more in the trust so I put more in than I had to since now that Medicaid will be paying my premiums, and that money will go back to me from SSDI, I am just at the limit with $855 per month for myself to do with as I please. I read that SSDI is going to be doing a cost of living increase in 2020 of $24.00 or so. Now, I will have to up what I put into the trust because I will then be over the limit of $859 per month and would lose medicaid. I knew nothing about medicaid/medicare after years of having private insurance and now I know more than I ever wanted to.
I just wanted to stress this is NOT just for poor people as your post seemed to apply but I realize you did not meant it in a hurtful way. I am sure most people are not even aware of this spend down but I was lucky I am being treated at a cancer center where they offer this kind of help to patients.
I am thrilled for you! what a wonderful outcome and I don't know that I would have had the stamina OR nerves to go through all that, like nstone said, it's a real shame sick people have to jump through hoops and we know stress is not good for our condition but thank God He got you through it and you can relax! I never wanted money, only enough to pay our bills and eat out or buy a this or that every now and then and it's such a blessing. God took care of us too in that with retirement and everything, it ALL just fell into place with my hubby being foreign born, social security, the difference in our ages,medicare part A; it all fell into place and had we known about all the rules we would have been biting our nails but turns out that ignorance truly IS bliss sometimes! I give all the glory to God, He knew when we didn't even know we were in trouble for future living arrangements! I said all that to say I know the relief you feel when it all works out! God bless you and heal us all in Jesus name, amen!
Yes, it really was a stressful process but the cancer center I go to to has an attorney there one day a week and she told me that she primarily sets up pooled trust spend downs so people with expensive illnesses can get medicaid to help them out. She said that with all the cancer and hospitals that she goes to once a week, she figures she does about 500 of these a month. You do not have to be poor. You just have to be willing to give up whatever excess income you have over the medicaid limit (in NY a single person cannot be getting more than $859 a month). The attorney works for a group of attorneys called NYLAG and primarily she works at different cancer center and says she does about 500 trusts a month.
I see people complain on other boards that they are just $100 over the limit to get medicaid. Meanwhile if they joined this pooled trust, they would give that $100 to the pooled trust. They dock me every month on the 15th and they only charge $20 for four withdrawals.
Even people with homes, cars can do the same. So if people need help with the expense of cancer or another disease, it is out there. All they need to do is the work needed to get approved.
Many people are not aware this option is available. They can talk to their social worker if there is one at the cancer center they go to, or go to medicaid directly.
I sure don't know what to expect if my SSDI gets approved. I am on pins & needles so worried I will lose my Medicaid.(Breast & Cercical Cancer Program) I did apply bc I can't work to much longer. I can barely work the few hours I now work. Very worried but decided to see what happens. The Ibrance/Falsodex combo is hard for me.
It is good to hear you received Dual Coverage. That is great news!😀
This is very stressful stuff to have to go through. Ugh!😵
If you get SSDI, there is still a two year waiting period before you are FORCED onto Medicare. So as long as you get SSDI (and depending on when SSDI the EOD (Effective Onset Date) of your disability or when you stopped working bc of your illness, you will get to keep the special cancer medicaid but when you become eligible for Medicare, it will be cancelled and then Medicare takes over and starts charging premiums and such. So this is a way once you have to go onto Medicare to continue to get Medicaid as dual coverage. But you have to wait until the special cancer medicaid (I was on that until they kicked me off on July 31st because they knew that I now was eligible for Medicare.) And Medicare immediately started docking the money for August. So now, that when and if that time comes, there are options.
Good bc I will not draw enough SSDI to go over the limit that the special medicaid allows per month. So that at least sounds promising about my insurance. I really need my treatments bc they seem to be working well for me at this point and time.
It does not matter how much you get from SSDI if you are on that SPECIAL medicaid. It is NOT STATE MEDICAID. Even at the medicaid office, many of the workers never even heard of the special medicaid. You still get to keep it until you are on SSDI for two years and then the special medicaid will automatically stop and Medicare starts. I was getting that special medicaid while I was getting my full SSDI amount which was way over the limit in NY for Medicaid but my special medicaid did not stop UNTIL I was on SSDI for two years. So it does not have matter how much you get for at least the first two years.
🙌🙌🙌 I have been wanting someone to help me with this question for so long. Thank you so much. You just don't know the worry you have lifted off of me. You are so right I have asked the SSA & they did not know about it. I even called a couple of lawyers & they didn't know either. I am so grateful I have finally talked to someone that is knowledgeable about this. You have absolutely made my day. Thank you so much for responded to my much needed question. I am so grateful that you got your Dual Medicare/Medicaid.🙌
Have a great day! You just made mine so much better. Thank you!💞
Well I live in Brooklyn, NY. I had been on ny.gov.marketplace medicaid and they kept me on even when getting the full SSDI. They said I am kept on until open enrollment so I panicked bc they were going to stop me in April which they did with a letter and I was not eligible for Medicare yet. But then the lady at the cancer center put me on the special medicaid which I stayed on UNTIL I had to hit medicare and then it stopped the day before.
Whoever got you on the special medicaid, should be able to tell you. Medicare is federal but mediCAID is state-governed so I am going by my living in NY. Each state has different rules but that is how it would work in NY. So you should be able to find someone (even at your cancer center or hospital) who would tell you.
You cannot apply for SSDI while you are working. You have to be NOT working when applying for SSDI. You can't claim you are disabled and still work when filing for the claim. You need to stop working first before applying. And important thing to realize and I do not know why, but SSDI will start the clock ticking from the day you STOP working and even, if approved quicker because we have stage iv, the FIRST FIVE months are unpaid. So if you get awarded SSDI (and you go on the ny gov. ss site and see approximately how much money you would get per month for SSDI), the first five months are unpaid so you have to have enough money to get through those five months. I used all my savings. But you do get to stay one the special medicaid for two years once on SSDI. Once you are eligible for Medicare, they will kick you off the special medicaid.
Also, I hope you applied under the Compassionate Allowance. Which means that SSDI will make a decision within 2-3 weeks and stage iv is always approved. But then like I mentioned, the five months of unpaid starts. If you did not file under Compassionate Allowance you can wait for months for a decision. And again, you cannot be working.
Yes they called me the next morning & the way I understand it if you are under the SGA limit you can work. I am way under that. They did allow me the Compassionate Allowance. So I will know soon. My original dx is past the 5 months as I was dx in March 2018.
Check carefully because I think there is a limit on how much you can earn in one month and still get SSDI. I believe it is $1,200 per month. Be careful not to work too many hours while waiting for SSDI to be approved.
I think you are going to be happily surprised. If you submitted the documentation (and medical records) showing that you were diagnosed in March 2018, the first five months are unpaid so that means for 2018, you start to be entitled to SSDI payments starting with Aug. Sept. Oct. Nov. and December of 2018 IN ADDITION TO getting paid for 2019 from January to October or even November 2019.
So you will get a back pay check of all that money at one time. And you won't get killed at tax time like I expected because half of the payments are for 2018 and the rest of the back pay would be for 2019 and they have some weird calculation so I owed nothing on it.
I actually got my back pay first (I had about $15.00 in my checking) before I got my first payment bc they quickly seen I did not owe IRS, I did not use an attorney that had to be get paid first, I owed no child support or student federal loans.) so you may find yourself getting a check for several thousand dollars around Christmas time or even before that.
I hope you do and it seems like you would.
I was 57 when diagnosed but did not apply for SSDI until 2018 so besides getting back pay, it also stated in my award letter that I would not be reviewed again until 7 years.
For younger women, even with stage iv, they tend to do reviews every 3-5 years.
If you are on SSI (which is a much lower amount than SSDI) then you would get to keep the medicaid. (At least in NY). If you are getting SSDI and its more the amount one person is allowed to get in your state to keep Medicaid (here in NY you cannot be getting more than $879 a month), then you will lose that special medicaid once you hit the period you are due to start Medicare. I had been on that special medicaid and it ended the day before Medicare started. See if you have a social worker at your center or stop in at a medicaid office and ask them. You should be able to google for your state to see what the medicaid guidelines are. Medicaid is State so it can differ in other states with their rules, but Medicare is federal.
Everyone is required to go on Medicare if they are getting SSDI after two years. Even if you get back pay for SSDI, they count those months. After two years, they will start automatically deducting for Plan B ($135.50) and you will have to pick a rx plan and a supplemental plan. I am assuming you have enough work periods to cover the cost of Plan A which you would not have to pay for if you worked long enough.
"If you're approved for disability benefits, you'll also get Medicare or Medicaid, depending on whether you receive SSDI or SSI benefits. ... However, SSDI recipients aren't eligible to receive Medicare benefits until two years after their date of entitlement."
I tried to call this morning but of course could not reach anyone but I am trying to figure out facts & it is so overwhelming to me. On top of that, I just don't feel good today and this is all new & frightening to me to think of loosing this special Breast Cancer Medicaid. Oh Well hopefully find out soon.
I u understand that New York is especially good for medical needs. If you live in another state, please look into this carefully as most do not provide the benefits that New York does.
Yes, we have Sloan Kettering here in NY which I am thinking of transferring to but waiting to see if my onco steps up her game in Brooklyn. I just imagined it would be nice to go live in a different state but now that I have been through this maze to get dual coverage of medicare in addition to medicaid which will pay everything that medicare does not.
Medicare is federal. Medicaid is state governed. No way after what I have been through with this process would I move to another state and even attempt this again. I would love to move to upstate New York where live is simpler but I do not drive so that would be difficult unless I was near stores and such.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Foundation one genomic testing
Medicare part D
COST OF TREATMENT !
Blood clot and kidney 
Ibrance/Pfizer copay assistance card
