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Thanks, Liz. the whole SSI and SSDI thing is all balled up in my mind with medicare, medicaide, and a bunch of other terms. One day I am going to sort out this confusion so i will know what everybody is talking about! Cindy
 
The Social Worker at our ALS clinic was VERY helpful in dealing with our SS office. She knew everything that they would need and prepared a letter and package for us to take with us. The letter essentially outlined the "presumptive disability" issue because she was aware that not all SS workers know about it (she said especially in smaller towns). The package included all of my husband's test results, as well as diagnosis and treatment notes. We also called the SS office and they gave us a list of other things they would need...SS numbers for us and our kids, bank account numbers, even a copy of our marriage certificate! Our process went very smoothly because we were armed and ready from the outset with everything they required.

Just another source of help from the ALS clinic!

Kathy
 
I started a file of all medical reports pertaining to my diagnosis and treatment. It is depressing to read but I will have all of the documentation I need to establish presumptive eligibility ready for the day I go to apply for disability.

Liz
 
Don't forget

Don't forget that when diagnosed with ALS you are automatically approved for Medicare's part A, B and D. You will need to bring this up however. Most Social Security reps. are not familiar with the amendments that cover ALS victims. You need to be very firm with them and go over their head if they don't work diligently for you on this case. You certainly don't need a vacuum cleaner sucking funds from the scrawny amount you'll receive from SS. so eighty six the idea you need a lawyer.Remember these people at SS are regular government employees so they don't receive bonuses for doing a good job it's 9:00 to 5:00 every day. Don't be patient with them as they know who Lou Gehrig was but have no idea of how devastating this disease is and just how fast it can render you useless. I would also recommend a good Durable Medical Equipment dealer in your area,s start talking to different ones to find out who really wants your business. If you fight for these services they will come to you much sooner then waiting for them to come to you. There are some very good people out there trying to help us so I won't say it's all a fight. I hope you find quick acting people in your area.
 
Does anyone know about coverage for dependents? I am concerned about my 11 year-old daughter. She is currently under my health and dental insurance plan at work. I know that with the ALS diagnosis, I will be eligible for Medicare, etc, although I can choose to stay with my work health insurance for a period of time (COBRA). What would be available for my daughter? If I stop working and she is not covered by anyone else, does this mean the only option she has is government health insurance?
 
If you can get her on government insurance this is a good deal. She might actually have better coverage than most private plans offer.
 
SS Disablity Benefits

I do not know if this may be of importance to those of you on or applying for disability because my Mom was retired and already receiving SS as well as her retirement check when diagnosed with ALS but in the state of Florida when you receive disability they take out premiums for Medicare which lowers the amount of your check. If you have a low enough income you can apply for the Qualified Medicare Beneficiary program which will pay your premiums as well as the Medicare deductable, also acts as a supplemental insurance by paying copays that the standard 80% does not pay as well as Medicare Part D premiums. In Florida, you apply for this program via the Food stamp and Medicaid office. I hope this info might be useful to some.

Sharon
 
Thank you Sharon, any information is most certainly appreciated! Thanks for sharing your experiences with us all...

Michelle
 
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