Well, today I had my official appointment with Social Security to sign up for disability and Medicare. I have to admit, I did not have high hopes.
My SS experience did not start out well: misinformation, misunderstanding and downright rudeness from reps at my local office, both in person and on the phone. No, said one during my preliminary in-person interview, you do not get Medicare immediately, ALS or no. Yes, said another, to whom I spoke on the phone trying to rectify First Guy's error, you do get Medicare right away, but only after your disability case has been "adjudicated," which can often take up two years. Yes, he emphasized, two years, even for ALS: "I've seen that happen often, ma'am." No, he then argued, most emphatically, I did not ask the question I thought I asked, but the one he wanted to answer. Two years. Absolutely.
I hung up hyperventilating.
So, even though I was armed with all requested documents and full medical reports, I was fairly pessimistic about today's visit. Luckily, I was quickly proven wrong.
I met with Amy, a cordial, professional and very helpful young woman who offered nothing but encouragement. She looked through my on-line claim, reviewed the other paperwork I had brought, told me about options, praised me for the completeness and thoroughness of my application and documentation, told me Medicare would automatically go into effect as soon as disability was approved, and assured me my case would be reviewed as promptly as possible.
She was even very apologetic when she explained the time frame for review: I may not get a notification for as much as 120 days.
Some two years.
A couple of tips for SS staff everywhere: 1) try to be like Amy, and 2) never, never tell someone with ALS they have to wait two years for your help. They may not have that long to live, and your insistence amounts to nothing less than cruelty.
