Old 04-23-2009, 11:15 PM #1 (permalink)
kelly's Avatar
Senior Member
 
Join Date: 2006
City: saratoga springs
State: ny
Country: US
Interest: My sweet hubby has ALS!
Posts: 672
kelly is on a distinguished road
kelly kelly is offline
Senior Member
kelly's Avatar
Join Date: 2006
City: saratoga springs
State: ny
Country: US
Interest: My sweet hubby has ALS!
Posts: 672
kelly is on a distinguished road
Default Medicare Nightmare

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.
kelly is offline  
Old 04-24-2009, 07:47 AM #2 (permalink)
liz's Avatar
Senior Member
 
Join Date: 2006
City: Albany
State: NY
Country: US
Diagnosed: 11/2006
Interest: I have been diagnosed with ALS.
Posts: 643
liz is on a distinguished road
liz liz is offline
Senior Member
liz's Avatar
Join Date: 2006
City: Albany
State: NY
Country: US
Diagnosed: 11/2006
Interest: I have been diagnosed with ALS.
Posts: 643
liz is on a distinguished road
Default

Kelly -

Does the SSA have anything signed by you acknowledging that you were given all this info about Medicare?
liz is offline  
Old 04-24-2009, 08:02 AM #3 (permalink)
rose's Avatar
Extremely Helpful Member
 
Join Date: 2008
City: Anytown
State: Maryland
Country: US
Diagnosed: 7/2008
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 2,893
rose is on a very distinguished roadrose is on a very distinguished road
rose rose is offline
Extremely Helpful Member
rose's Avatar
Join Date: 2008
City: Anytown
State: Maryland
Country: US
Diagnosed: 7/2008
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 2,893
rose is on a very distinguished roadrose is on a very distinguished road
Default

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.
rose is offline  
Old 04-24-2009, 08:36 AM #4 (permalink)
MtPockets's Avatar
Very Helpful Member
 
Join Date: 2006
City: Gulfport
State: Ms
Country: US
Diagnosed: 05/2006
Interest: I have been diagnosed with ALS.
Posts: 1,537
MtPockets is on a distinguished road
MtPockets MtPockets is offline
Very Helpful Member
MtPockets's Avatar
Join Date: 2006
City: Gulfport
State: Ms
Country: US
Diagnosed: 05/2006
Interest: I have been diagnosed with ALS.
Posts: 1,537
MtPockets is on a distinguished road
Default

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.
MtPockets is offline  
Old 04-24-2009, 08:52 AM #5 (permalink)
New Member
 
Join Date: 2009
City: Clinton
State: CT
Country: US
Diagnosed: 01/2007
Interest: I am a family member of someone with ALS/MND.
Posts: 19
Harry77 is on a distinguished road
Harry77 Harry77 is offline
New Member
Join Date: 2009
City: Clinton
State: CT
Country: US
Diagnosed: 01/2007
Interest: I am a family member of someone with ALS/MND.
Posts: 19
Harry77 is on a distinguished road
Default

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
Harry77 is offline  
Closed Thread

Tags
bed, confusing, diagnosis, health, ice, immediately, insurance, medicare, mistake, night, running, social security


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
a nightmare johnskip Do I Have ALS? Is This ALS? 27 09-17-2014 06:36 PM
g-tube nightmare Plumeria84 General Discussion About PEG's 22 06-02-2012 06:37 PM
Lift Chair Nightmare Georgia Peach Tips, Tricks, and Gadgets 1 09-19-2011 03:59 PM
NCV Nightmare notme Do I Have ALS? Is This ALS? 7 04-30-2011 03:57 PM
Gotta get this nightmare out of my system GlenBrittle Rants & Raves 20 10-28-2009 02:16 PM
Bedtime is a Nightmare! mndireland General Discussion About ALS/MND 22 10-20-2008 10:48 PM
Dad's living in a nightmare - help! Debbie53 Current Caregivers (CALS) 7 10-14-2008 03:43 PM
meds nightmare Debbie53 Current Caregivers (CALS) 6 10-05-2008 10:31 PM
Worst Nightmare Come True jpsugar123 General Discussion About ALS/MND 10 06-02-2008 12:53 PM
bulbar nightmare. olly General Discussion About PLS 17 05-31-2008 05:47 PM


All times are GMT -5. The time now is 05:48 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016