My SSDI was awarded based on symptoms and Meniere's Disease. Since being diagnosed with HD, I was wondering if I should notify them or wait for a reiview. Anyone have an idea?

Thank,
Mike

It might help. With some forms of SSDI, you need to recertify your disability every so often. I don't know whether it would make a difference for your amount of benefit, though.

I think it is worth a call.

Mikee- I would leave well enough alone. The diagnosis has absolutely no bearing on the amount you receive. That is totally dependent on your earnings history. The recertification is very superficial and basically wants you to state that you have seen doctors in the past three or so years. I know of no cases where the doctors are even contacted. If you give them a new diagnosis that could open a whole new process which you don't want. When you fill out the recert paperwork you will be asked when you visited a doctor, lab, hospital, etc and for what reason. You can "insert" HD at that point. They do not even ask the names of who you saw. This advice is off the record as I am now retired, but I would never offer more info to them unless asked. The only time you are required to volunteer information when not asked is if your condition improves, which certainly yours has not.

Thanks for the great info. I was awarded based mostly on symptoms and testing results anyway. I think I'll wait.
Thanks,
Mike

Laura & I just went through the SSDI review process. We had a neuro appointment already set in anticipation of the review. The forms are 'SSA-3380 Function report 3rd party' which I filled out and 'SSA-3373 Function report adult' which they want the disabled person to fill out. You can search them out on SS site for review. The forms do ask for doctor info, dates, reasons etc as well as supplements and medications which leads to the perscribing doctors name. When we looked at the form that Laura was supposed to fill out we decided it would be too much so I called the case worked and explained about HD he said it was not a problem for her to not fill it out and that they really only wanted the third party form anyway in this case. I put together a two typed pages of answers to the questions along with links to nih.gov/huntingtons and the HDSA site. Every answer had "see attached"' I also followed up with a phone call to the case worker to make sure he received it.


Pete

Pete- Was this an initial application process or a recertification process? I haven't seen these forms used in a recertification before. My daughter has been on SSDI for HD since 2004, and has never been recertified. In my case, I have an autoimmune disease called myasthenis gravis and have been recertified twice since 2003. Both times they simply wanted to know what medical visits I had made. Perhaps it differs by state as I know that state agency's handle this.

I think that was the third recert process we went through since 2005.

Additionally, I used Phil Hardt's page [www.hdlf.org] as a reference.

Pete