The entire reason I first became involved in Alzheimer’s advocacy is because when my family was in the throes of the disease we had the added stress of worrying about how to pay for my mother’s care. Most of you likely know the saga but as a quick recap her insurance company denied her claim saying Alzheimer’s was a “pre-existing condition” and then to make matters worse since she was under the age of 65 she couldn’t access her Medicare benefits. The result was that for the last three years of her life my dad had to scramble to find alternate care options, spend down their life-savings, and eventually legally separate from her. My dad paid out of pocket for all of her care and she died before any assistance ever kicked in.
After having time to grieve her loss, I decided something was not right with the system. How could it be that my parents who worked as educators, planned, saved, and did everything right we’re completely shut out of services simply because my mother had the unfortunate luck of getting Alzheimer’s before her 65th birthday? Through my involvement with the Alzheimer’s Association I learned there were tens of thousands of people in the same situation. I attended my first Public Policy Forum specifically to testify about ending the two-year wait period for people with Alzheimer’s under the age of 65. From there I learned about so many other policy issues that impact the Alzheimer’s cause.
When I clicked open my email bright and early this morning, news of the biggest policy win in the history of the Alzheimer’s Association greeted me. The Social Security Administration has added Young Onset to its Compassionate Alliance Program which means those with young onset with expedited through the system. You can read more about it here. This is a historic day for the cause and I’m glad to say I was a small part of it.
This entry was posted on Thursday, February 11th, 2010 at 9:05 am and is filed under Alzheimer's Info, Public Policy Forum. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.
