I am back. Tomorrow, July 29, 2009, there is a Social Security "Compassionate Allowance Outreach Hearing on Early-Onset Alzheimer’s Disease and Related Dementia". It is being held in Chicago. The purpose of the hearing is to advocate for waiver of the 2-year waiting period for EOAD patients to begin receiving Medicare benefits.
Our member Laura Jones, and her husband Jay, will be speaking on the panel. Because these links were sent to me in an attachment in my e-mail, they will not post here. Please go to the home page - www.thealzheimerspouse.com-and read all of the information I have on the hearing. It is in today's blog. Laura has promised to keep me up to date on the hearing.
I don't believe that the 50 diseases on the compassionate allowances list are waived from waiting the 24 month period before getting Medicare. My husband is on SSDI for FTD and was approved through compassionate allowances and he has to wait the 24 months before he would be eligible for medicare. People with ALS (Lou Gehrigs disease) and renal disease don't have to wait.
Below is some language from the Medicare website:
"If you are under age 65, you can get Part A without having to pay premiums if:
You have been entitled to Social Security or Railroad Retirement Board disability benefits for 24 months. (Note: If you have Lou Gehrig's disease, your Medicare benefits begin the first month you get disability benefits.)
You are a kidney dialysis or kidney transplant patient."
According to all the meetings I attended in DC, if you are under age 65, and have been approved for SSI disability you MUST wait 24 months to get on Medicare. UNLESS, you have one of the 50 diseases that have had the 24 month waiting period waived. FTD is on the list. It is #18. He should not have to wait the 24 months. Here is the link to the list - http://www.ssa.gov/compassionateallowances/conditions.htm
You can watch the hearing today on the Internet. I'll post the link when I get it. I got an e-mail last night about it, but the link wasn't in it.
By the way, I was shocked to see FTD on the list. If that is on there, Alzheimer's Disease should be. It doesn't make any sense.
It may be that FTD is on there because it is known that younger people get it, whereas Alzheimer's is wrongly viewed as a disease only of the elderly, who qualify for Medicare anyway.
You are so right about that one. For the last two years, between 300 and 500 of us delegates stormed Capitol Hill with the message - "It's not just old people who get AD". Even the distinguised members of the Alzheimer's Study Group were stunned to hear Tony's message about EOAD. The Alzheimer's Association has been bombarding lawmakers and anyone else in their path about EOAD. Hope it works this time. Tony Pesare,Trish and Bob Balfour, Betsy and Dave Howe, Mary and Steve Newport, Laura and Jay Jones, are just a few of our members who have been active in this endeavor.
My DH has FTD and is on SSDI (59). We were never advised that he could go on Medicare before the 24 month waiting period. I thought the compassionate allowance was to expedite the SSDI qualification process, but the 24 month waiting period for Medicare was still required. I know that's what the information he received from SS said. I checked the link Joan mentioned and it does not address the Medicare issue. How do we find out if this is correct?
I am not sure this is relevant because my disease is not on the approved 50 list. I was 32 and I was approved for SSDI quickly, but I did have to wait the standard required time for medicare to kick in.
I checked the Medicare site and the only two diseases that didn't require the 24 month wait was ALS and renal failure for dialysis. I believe the compassionate allowances is just to expedite the processing of SSDI not eliminate the 2 year wait.
I just got off the phone with my contact at the Alz. Association in DC. My information was wrong. He clarified all of it for me. Just to avoid more confusion (I hope), I am closing this topic, and starting a new one with all of the correct information.