Social Security Disability Insurance and Medicare Initiative
THE FIGHT CONTINUES
Earlier this year, Representatives Bob Filner [D-CA] and Brian Bilbray [R-CA] introduced H.R. 678, The Huntington's Disease Parity Act of 2009. If passed, this important legislation will require the Social Security Administration to update their outdated disability listing for HD and also provide a waiver for the 2-year Medicare waiting period to people disabled by HD.
Delays and unnecessary reapplications for Social Security Disability Insurance (SSDI) are far too common and you don't have to go far within the HD community to find someone that has struggled or is still struggling to obtain benefits. After they begin receiving benefits, people with HD often face a gap in health coverage due to the Medicare eligibility waiting period, at a time when their medical needs are only increasing.
This is an issue affecting everyone in our community and we've gained a lot of ground this year in bringing about these much needed changes. With every co-sponsor we come one step closer to our goal. Call or write your Representative today and ask for co-sponsorship of HR 678.
TAKE ACTION!!
Want to learn more? Here are some documents you may find helpful.
For Your Preparation:
A brief overview of the difficulties people with HD face when applying for SSDI and receiving Medicare and our proposed solution. This is meant to prepare you for the visit and some questions your representative may ask you.
The "bare bones" of what you should discuss with you're Representative. These are to prepare you for your visit and, while you may bring them with you, you touch on them in conversation rather than read them.
Instructions on how to set up and conduct a home office visit with your Representatives to educate them about HD and what they can do to help.
To Leave Behind At Your Visit:
Our bill that seeks to update the HD medical criteria used by the SSA to determine eligibility for disability benefits. Also seeks to eliminate the 2-year Medicare waiting period for people once they begin receiving SSDI.
This is a letter you can leave with your Representative at your visit to give them additional information about the bill and contact information for our Advocacy Team. Be sure to address, date, and sign this letter before printing.
This is a letter from the bill's original sponsors that was circulated through the House asking for support from their fellow Congress Members.
Current list of Representatives that have signed on in support of H.R. 678.