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kelly

Senior member
Joined
Oct 6, 2006
Messages
661
Country
US
State
ny
AAAHHHHH....can't believe we are in such a mess. Two years ago we applied for Social Security due to my hubby's diagnosis. Of course their was no wait period and we quickly received benefits. However, due to our amazing health care coverage (COBRA) we refused Medicare. What a big mistake. We just received notice on 4/14 that our healthcare will discontinue on 4/29/09. I immediately contacted Social Security and all they could tell us is that we missed the general enrollment period by 14 days. Our case manager was adamant that he explained the negatives of refusing medicare...do not remember that at all. We learned that in certain cases an "equitable release" can be made if medicare was not explained appropriately, but he would not budge. Meanwhile, we are applying for an extension for our cobra coverage. We are running out of time for peoples decisions. I have finally written a letter to our Senator attempting to explain this confusing matter. I am emotionally fried dealing with this situation. I know that I will probably have to contact a medicare attorney...but something has to happen fast. We can't have our insurance lapse...or we will all be difficult to insure. Anyone deal with a similiar situation......going to bed now. Good Night! Thanks for listening.
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
Kelly -

Does the SSA have anything signed by you acknowledging that you were given all this info about Medicare?
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
Kelly, What a mess!

I think, that unless your caseworker has a recording of him explaining the negatives of refusing it, then its only his word against yours. And even if he did, seeing as your hubby's illness is TERI and falls under the Compassionate Allowances, Medicare should be required to act immediately. ~ if him having ALS is not enough for an "equitable release", I fail to see what would be.

Writing your senator was good. I think it may be more effective to work with a congressman though. From what I've learned, its our district congress that gets more involved in peoples needs for action. This is what I had to do when my original application for SSD was denied (even though I had an ALS diagnosis)... what I did was find out who my congressman was for sure, and went into his office. (I tried writing and calling, but , when I called I was advised to come into the representative's office, that it would move things along at a much faster pace) At the congressman's office, I spoke with an aide there who had me fill out a form, then one of their caseworkers called me and offered to help. With the pressure from my congressman's office, the SSA made a decision in less than one week. Even though my experience was with SSD rather than Medicare, they're interrelated and your local representative should be able to get it straightened out ASAP. Especially when you explain the time urgency of the matter.
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
Rose, very good idea. I am still awaiting my service connected military disability to be approved. If they give me the run around, I may just have to go to their office and camp out.
 

Harry77

Member
Joined
Mar 30, 2009
Messages
19
Reason
Loved one DX
Diagnosis
01/2007
Country
US
State
CT
Kelly;
We had a bad experience with Medicare/Health insurance that went on for months, until I found an advocacy group that gave me an answer in a day. I've attached the address of the group I worked with, they're located in CT, but maybe they can redirect you to someone in your state. They were good people to work with and free. Good luck.

National Office:
Center for Medicare Advocacy, Inc.
11 Ledgebrook Drive
Mansfield Center, CT 06250
(860) 456-7790
 
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