HUntington's Disease & SSDI

[Crisstyd]

I have a question about SSDI and my daughter who has HD. She was diagnosed a year ago via DNA test at the age of 24 (24 and 3 months). The issue is that she was showing symptoms before she was 24, but we did not get her tested because we were first hoping it wasn't HD but mostly because I didn't want her to be unable to obtain medical insurance (pre-existing). Anyway, she gets $500 a month on SSI and was turned down for SSDI. They say she has to work and earn credits to get it. There is no way she will ever be able to work again she has severe dementia, etc..they even took her license away. Will she ever be able to qualify for SSDI or must she live on $500 a month forever?

[MSW1963]

Hi Crisstyd, SSI includes annual COLAs, aka cost of living increases.

COLA increases have been affected since the economy tanked in '07?, one year when there were no COLA increases.

COLA is tied to CPI=Consumer Price Index, a complex formula tied to the average income of workers and cost of consumer goods, I think.

Since the economy tanked, it has been suggested that iCPI? replace the existing CPI formula to determine cost of living increases for SSI, SSDI, and SS retirement benefits.

I'm sure Rich will be along soon.

Best wishes to your daughter, you and your family.

[Rich Feingold]

Hi, Chrisstyd and MSW1963. Chrisstyd, so sorry to hear about your daughter.

You should have an attorney review this matter to determine whether or not your daughter became disabled prior to age 22, even without the HD diagnosis. Then, if your daughter ever were to become eligible for benefits based upon her father's or mother's account, then she could potentially qualify for Disabled Adult Child benefits. Here's some info from SSA's website regarding these benefits: http://www.ssa.gov/dibplan/dqualify10.htm#age22.

That is the answer that comes to mind, first. Of course, I always tell people to check on their benefits with Social Security.

Also, I am not sure why her benefit amount is $500. That is the exact amount?

Rich

[Crisstyd]

Yes, her benefit for SSI is $500 a month. She has a 3 year old son and lives with her boyfriend at the moment. Soon she will need to move in with me so I can care for her. I will contact a local lawyer to discuss her situation.

Thank you so much for your replies!

[Midget19]

Huningtons Disease Patients have help through a place called Caring Voice Coalition if you look them up online and call them they will help you. I got my lawyer through them for free.

[Rich Feingold]

Thanks for your posts, Crisstyd and Midget19.

Rich