SSDI Questions

[hopenowandtomorrow]

I know we have several people who have researched the SSDI qualification & application process in this online community. I hope you can help me.

I am approved for SSDI. I was not working when I got approved. This October I will be 62 & start receiving SSDI income benefits. As a result, I qualify for Medicare when I’m 64.5. Without being approved by SSDI I would be eligible for Medicare when I am 67.

Currently I am paying almost $1,000 per month for COBRA insurance from my last employer. I will be paying that until I’m 64.5 & start Medicare.

I know the income limits are low ($800-1200/mo) to remain on SSDI.

Questions:

1. If I make more than the income cap & I don’t receive the SSDI income, will I still be eligible to receive Medicare when I am 64.5?

2. On Medicare, what is the best supplement policy to purchase for a MBC patient?

I appreciate your help!

[kearnan]

Unfortunately, no. The clock starts clicking when you are on SSDI and if you choose to return to go back to work and stop collecting SSDI, you will not get those months credited towards receiving Medicare. I chose not to purchase a supplement since I am living on SSDI only which is why I am doing the pooled trust bc Medicare, unlike Medicaid, makes you pay a portion of your health costs. There is something (and I am not sure how it works bc I had no plans to go back to work at age 58) Called the back to work program with SSDI. Be careful.

Because if you are collecting SSDI and then go back to work for a short while and are not collecting SSDI anymore and then later reapply to get back on SSDI, SSDI can then change your EOD (Effective Onset Date) from the effective date you when you first started getting SSDI and change it to the date you quit working your last job that you are considering (the one in which SSDI stopped for you) which means you will be pushed back months (depending on how long you plan to work) from receiving Medicare. The first onset date will no longer be when you first applied for SSDI and started receiving it. If you stopped to work and SSDI stops bc you are making too much, if you need to go back on SSDI, they may and usually do use the new date as your Date of Disability making it even longer to get Medicare. Believe me, they do not make it easy for you.

You can try and call a SHIP Counselor in your area who may help you find the best supplemental plan for your circumstances. Also, there are many cancer organizations and even pharmaceutical companies that can assist you financially if you have high co-payments and deductibles depending on their funding. These organizations are usually geared towards women who are on SSDI and have private insurance. Pfizer is one pharma company that may give you say the Ibrance for free or for $10 if you have a high co payment. I am eagerly and anxiously awaiting the letter from Medicaid that I have no spend down since the excess money is now in a trust. Once that happens the $135.50 and the $37.90 that is now being deducted for Medicare premiums will be paid by Medicaid for me and I will get that money back (I put even more money than I had to in the trust bc this way when I get those premiums back, I will just be at $850 a month and will still qualify and not have to add money to the trust. Medicaid will also pay for my Medicare deductibles and co-payments and I am assumed, when and if, things get worse, I am covered for aids, hospice care, nursing home (God forbid). I will also get (which I miss) my free private car service to and from all doctors appointments, not just the cancer center. I will also have dental and vision on Medicaid which Medicare does not cover. Good luck.

[hopenowandtomorrow in reply to kearnan]

Thank you Kearnan! I knew you would know!

[kearnan in reply to hopenowandtomorrow]

LOL.....Believe me I have almost had a nervous breakdown dealing with SSDI (actually that part was the easiest bc the nurse navigator took care of it all). And I was on medicaid for a year before I even knew it. I thought I had no insurance LOL...then accidentally found I was on nygov. marketplace medicaid. I had tried to find insurance, got overwhelmed and stopped and then started getting all these brochures in the mail. Apparently, Affinity First (if you don't choose a specific medicaid plan) they choose one for you. So when I would get these envelopes, I would thrown them out without even looking. I found out accidentally I was on Medicaid. I know Medicare was coming up this August and that is where the stress began. It is like a maze...a horrible maze....and unless you have someone with knowledge or helping you, it can become overwhelming. I bow my head down in shame because alot of these online Medicaid/Medicare people (if you can even get through on the phone) are very short and curt. But once I mentioned (and yes I used it) that I was a stage iv breast cancer patient, you would be surprised at how their demeanor change. August was a tough month. It was starting medicaRE and I was losing Medicaid and to get into the pool, you have to go down to the Medicaid office to apply and they will deny you letting you know how much excess you have. It was a long road with alot of stress. I was fortunate that I had an attorney but I made a "friend" of a supervisor at the Medicaid Pooled Trust Spenddown Department. I was so so stressed and told her I was told it could take months to be approved. She said that is nonsense and tell your attorney to let me know when she is dropping it off and I can expedite it so that you will have in two weeks. Every day I go down to the mail box with my heart in my mouth. But I have learned so so much. The sad thing is that you have to be either very wealthy or dirt poor. But also that there are alot of organizations for people like you who would have to pay for their own insurance. It was like a full time job. I am nearing the end and once I get that Medicaid approved spend down, I am good for life. I knew nothing until I had to go through this maze. When the lady had social security (they are NOT supposed to let you know over the phone...it comes in a letter) called me (bc I was so stressed and crying) to let me know that I had been approved and that backpay would be coming (I had no idea what backpay was), I said to her I can't even be excited bc everything is getting worse and worse so until I get that letter or money, I cannot believe it is real. A week and a half later I went from having $5.54 in my checking to over $25,000. I was in shock. It is confusing and many people are not aware of the help that is out there. Now, I can also apply in NY to get a half reduced metro card. Rides in NY are $2.75, but because I am disabled and over 55, I can now get a metro card at 1/2 price. I will take every benefit I can get. With the spend down, I could not have more than $15,000 in the bank which I don't have anymore.

[Southside25]

I can only speak to your question on supplemental plans. I'm 72 and started on a Medicare Advantage Plan at 65 which is very restrictive and subject to co-pays, etc. When I was diagnosed 18 months ago, I switched to the best supplemental plan which is Plan F, I think. It pays for everything. My charges - with no surgery, just doctor, scans, etc. - over the past 18 months probably exceeds $150K (not counting the Ibrance cost which is covered by grant funds). No questions asked, no restrictions on doctor, hospital, meds. they just pay everything - no co-pays, no deductble - I haven't paid a penny. It's expensive since I started with the plan late - the older you are, the more you pay. It's absolutely worth the cost. I wouldn't think about anything less than the best plan there is. You can go online to any provider, like Blue Cross or United Health - and see the different plans and price them out.

[hopenowandtomorrow in reply to Southside25]

Thank you very much! This is very helpful Southside25!!!

[kearnan in reply to hopenowandtomorrow]

Sorry to break the news. It's always best to research or call Medicare to find out what is available but starting 20/20 Plan F (and Plan C) will NO LONGER be available for new enrollees. The ones that already have it can keep it, but they are doing away with it in 20/20. See below:

Is Medicare Plan F going away?

I understand that medigap Plan F is going away in 2020. ... Medigap Plan F and Plan C can't be sold to newly eligible Medicare beneficiaries after January 1, 2020, but current beneficiaries can keep their plans.

[hopenowandtomorrow in reply to kearnan]

Thank you for the update! I’ll have to research the supplement plan options in 2022 when I’ll be eligible. It sounds like the best plan for MBC patients is the richest & least restrictive option.

[kearnan in reply to hopenowandtomorrow]

Medicare plans do not cover rxs. You have to buy a stand alone plan. My social worker told me to buy Plan D rx and to choose Silver Script Choice which I did. It costs me $37.90 per month but it also expects me to pay 20% towards my cancer meds which my share would be $2,400 per month which is why I am trying to get medicaid as my secondary. I am praying to get the letter this week. But I was able to get Lilly the pharmaceutical company to give the $12,000 meds to me for free until end of 2019 but you had to be on Medicare and also have a Medicare Plan D chosen (if you don't choose a Plan D yourself, Medicare will just pick one for you.) My social worker knew I was doing the trust so told me to pick that. She was under the impression since I did all the trust documents, that I would get medicaid immediately which is NOT the case. After CDR approved me which they did and I am into my second month, then the trust documents have to go to Medicaid for approval and they will send me a letter with NO SPEND DOWN bc then I will only be getting $850 a month (the trust will pay my bills) and thus I will qualify for Medicaid.

[hopenowandtomorrow in reply to kearnan]

Thank you for the update! I hope you get approved for Medicaid soon!

[kearnan in reply to hopenowandtomorrow]

From your mouth to God's ears. I am expecting the letter at least within two weeks. It's nerve wracking. It was a long journey to get here and just waiting for that letter. Plus, once approved for Medicaid, they will pay any outstanding medical bills I have had prior to my being approved. So I just got a $90 medical bill for my last visit in August with onco. I was confused bc I know she accepts medicare without assignment (meaning she will accept what Medicare pays....some accept Medicare but you still have to pay those doctor a bit more if they do not do it without assignment.) I then found out that for doctors visits for Medicare, I have a $185 deductible, thus my $90 bill. I am NOT paying it bc once approved, I will submit to Medicaid to pay it. Medicaid will backday and pay any outstanding medical bills for the prior three months. Since this is now for life and the treatment will also be expensive and God forbid if I need nursing care or long hospitalization or hospice, it will all be covered already. I have to be in that pool trust for life and that is taking getting used to, but they have paid my rent, Verizon bill and credit card so far (you can use it for vacation or clothes) so I wanted me to have to lay out the least amount of money. And with medicaid comes free car service to and from all doctors appointments which I need bc I do not drive. I had it for two years and I was shocked to learn it was not just for my cancer visits. Any doctor or dentist as long as they accepted medicaid, I would get free car service.

[kearnan in reply to hopenowandtomorrow]

The more expensive, the more it will cover. I did not want to have to pay for Plan B (which I am doing now at $135.50 and Plan D which is $37.90 ON TOP of paying for additional insurance. So by doing the pooled trust that I keep referring to, I will get full Medicaid as my secondary insurance and since I do NOT have more than $15,000 in savings (they don't count IRAS I think) I qualify for Medicaid to then start paying My Medicare Plan B and Plan D premiums and I will see that money back in my SSDI. Medicaid will then cover what Medicare does not and also any deductibles. You have to be really wealthy or poor.

[kearnan in reply to hopenowandtomorrow]

Oh, don't worry about it now then. Because things change constantly.

[kearnan in reply to Southside25]

This has been in the news for quite some time now.

Is Medicare Plan F going away?

I understand that medigap Plan F is going away in 2020. ... Medigap Plan F and Plan C can't be sold to newly eligible Medicare beneficiaries after January 1, 2020, but current beneficiaries can keep their plans. Also Plan C will be discontinued. If you already have it, you can stay on it, but after 20/20 it will no longer be an option.

[Southside25 in reply to kearnan]

I forgot that. I did check United Health Care, and they still show a Plan C for 2020, but maybe their website is not up to date. I would just suggest that anyone find the best plan possible if you're dealing with a chronic disease so you get as much paid by insurance as you can.

[kearnan in reply to Southside25]

That is why I am going the route I am on. I had medicaid, they paid for everything. August I had to go on Medicare and I was shocked by how little they actually pay and that they expect the patient to have "skin in the game" and have deductibles for a hospital stay and I think after 30 days, they stop paying, they don't to nursing home care. I may not need some of these things now, but at some point I will and this way I am not worried because I will have dual coverage.

[library2019]

I called social security I am over 65 and on social security they told me can’t get ssdi after age 65 even though it would be more

[kearnan in reply to library2019]

That is the way it works. I am 59 and on SSDI. Once I turn 67 (my retirement age), I will automatically be switched to Social Security but I will be receiving the same amount anyway. That is because that is retirement age, so they won't give you disability for not working if you are already at retirement age.

[kearnan]

Everyone is entitled to Medicare when they hit their retirement age. That is separate from getting it while collecting SSDI and are under your retirement age.