Here is the accurate information that I just received from talking to my Alzheimer's Association contact in Washington DC:
The hearing today in Chicago is to try to convince SS to grant SSI Disability to EOAD patients when they are first diagnosed. When someone with EOAD is diagnosed, and applies for SSI, SS usually determines that they are not disabled enough YET to be eligible for SSI. They want to wait until that person is seriously impaired. But with an EOAD diagnosis, they usually are no longer able to do their job, thus the family income suffers serious consequences, and often with the job loss, there is loss of health insurance. By the time the EOAD person is far enough into the disease to be eligible for SS disability, the family could be bankrupt. And usually, young children are involved.
There is a list of Compassionate Allowance Diseases that do not require a long wait for SSI approval. The Alz. Assoc. is trying to get EOAD added to the list. That is what today's hearing is about.
AFTER an EOAD person is approved for SSI, there is STILL a 2-year waiting period to get onto Medicare. That is a separate issue that the Alz. Assoc. and all of us delegates have been working tirelessly to get waived. It is being discussed as part of the overall healthcare overhaul.
I hope I have cleared that up. So sorry for my screw up. The hearing is still going on as of 3 PM Eastern Time - http://www.webcasting.com/psav-drake.html
There are two types of disability benefits that the Social Security Administration oversees. They are Social Security Disability Insurance (SSDI), based on an individual's work record and this is what our FICA taxes result in; and Supplemental Security Income (SSI), which can also be paid to disabled individuals with limited assets.
I think the above pertains to SSDI, not sure about SSI. Perhaps you can clarify so those who can benefit will understand--thanks.
As far as I know, it's the disability payments our spouses have gotten because they were too disabled to work. I don't know about it being tied to having limited assets, because I have a friend who was disabled in her mid 40's, has been collecting SS disability for about 15 years, and believe me, the word "limited" would NEVER describe their household income.
I'm guessing that this webcast of the hearing will be available on the web for a certain amount of time after today, so whoever is interested can watch it. I''ll check to make sure.
Here is something that many of you may not have thought about. If someone worked all of their live and earned the right to receive SS disability on their earnings and then did not work for ten years, they are no longer eligible for SS Disability based on their work history.
This happened with us. My husband did homemaker and self-employment type work since he left his last job in March of 1999. His last SS report said that he is no longer eligible for disability. He told me that he could still apply for SSI and I told him that household, income is related to the decision and we would not qualify.
Just something to think about. If you and your spouse are in the limbo time where they are no longer working but have yet to be diagonised, keep this in mind. Ten years can go by pretty fast.
Can't get more up to date info than this - e-mail from another of my DC contacts:
"Joan - I am actually sitting in the hearing room now.
The hearing is not about the Medicare 2 year wait at all.
It is about Social Security Compassionate Allowances Initiative.
Compassionate Allowances designation could streamline and speed up the approval process for people under 65 with AD and related dementias who apply for Social Security Disability income (SSDI).
You have to be approved for SSDI before you can even get to the "2 year wait" for Medicare.
Unfortunately, approval as a Compassionate Allowance does not mean immediate exemption for the 2 year wait.
They are actually overseen by different federal agencies (SSA vs CMS). The 2 year wait is another battle we're still going to be fighting regardless of the outcome of this hearing.
The hearing was coordinated by Social Security (SSA) to hear testimony from experts in the field of dementia to help SSA determine whether people with a diagnosis of AD and related dementia under age 65.
There are 3 families (advocates) providing testimony and our CEO also testified.
In the live audience are about 100 volunteers and staff of the Alzheimer's Association. They are here to show their support."
And one more e-mail from my Advocacy and Public Policy Coordinator:
"Since the testimony at the Social Security Administration Compassionate Allowances Hearing is running behind schedule, the program ( with Laura and Jay Jones) has been rescheduled for Thursday night during the evening news with Charlie Gibson. If we receive more details we will advise tomorrow."
When I applied for SSDI for my husband (EOAD age 46) we were told that 95% chance they would deny the first time and appeals process would begin for possibly up to 18 months... Exactly at the 6 month point when he was eligible we got a letter saying they wanted my husband to see "their docs" for a mental exam. We did the exam and about 3 weeks later he was approved. Not sure how we got so lucky!
I have heard stories about approval that it is affected by time of year (has quota been met), district you are in, and of the person reviewing and making the decision. My SIL was approved first time. She could no longer drive cause she would get lost but then she was always that way.
They should have received my hb's second set of paperwork and medical records by now (mailed last Friday). Now we wait and see what happens. Regardless his early SS starts this fall.
My dh was approved the first time he applied for SS. They are supplimenting the workers comp he is currently getting. It kinda scares me the process was so easy and fast. Maybe it was because he had more than one issue for disability, who knows. But I am sure the other shoe has not dropped yet, and I will be screaming soon with the SS department.
My wife was recently denied S.S. disability because she had left the work force 5 years and 4 months before she was medically diagnosed with a memory problem. ( S.S. requires you to be medically diagnosed within 5 years ). Little did I know that the problem she felt in performing her Job in 1999 (accounting ) was due to EOAD. She was about 53 at that time.. What upsets me the most is she was denied (June 16th this year) just about the time the current president signed a bill that would provide s.s. benifits and long therm care for same sex partners of federal employee,s... Not that I care that these are gay couples,, but why should there so called life partners be GIVEN this benifit when my wife of 42 years, who worked 28 years and because she was in denile of her condition ,and not want to be tested ,,be turned down for benifits.. I have appealed there decision so who know where it may go.. If she is turned down again I will turn it over to an attorney.. The few hundred bucks more she would get per month ( she will be 62 Sept.5th ) is not what this is about ,, its about whats fair......
Dan - I agree, the government decisions do not make sense much of the time. My hb turns 62 9/17 and the difference for him is about $300, but that could make a big difference. Good luck. We are still waiting, but then it has only been about 4 weeks, the last paperwork went in a week ago.
Here is a link where you can email a letter to your senator and congressman regarding getting rid of the 24 month waiting period for medicare. The website is the Medicare Rights Center.