Dear Chapter Presidents,

As you may know one of our main advocacy goals here at HDSA is to improve the process for obtaining disability benefits for our HD families under Social Security. 

In order to make a more compelling argument to the SSA, we need to summon the voices of our HD community members, particularly those who have had difficulties applying for SSDI within the current framework.  If you have experienced such difficulties, or know someone who has to whom you can forward this email, we’re looking for responses to the following set of questions:

1.      How many times have you applied for SSDI?
2.      How many times were you denied SSDI benefits?
3.      For what reason(s) were you denied SSDI benefits if so?
4.      How long did the decision process take?
5.      What were obstacles you encountered during the application process?
6.      What recommendations would you give the SSA to improve the process?

Sean Luis