As you may have noticed, I’ve been on a short sabbatical. I had to, in order to devote time to starting the whole Social Security Disability process over from the beginning. Why do I need to endure this again? If you don’t yet know the bad luck I had of being assigned a federal judge who only approves 2 out of 10 people, here’s my story. For those of you who know about this continuous battle, the good news is I finally submitted my online application today. Is there anyone else out there who’s had to start the whole process over a second time? Based on the people I’ve spoken with, I feel very alone in this regard. Maybe I’m one of the “chosen few”, so I can help others learn from my experience.
Whether you are filling out a new application for SSD or you know someone who is, here are a few lessons to help you on your journey. Never give up! That’s what the Social Security Administration wants you to do. But if you truly can’t work, you deserve to receive disability payments from our government.
1. There are resources available. Ask everyone you know, whether it be doctors, clinics or a community of people who also have your disability. In Minnesota, I found out that Courage Center has ideas for references, in addition to the Disability Linkage Line. Not only does this phone number have ideas of people who can help you fill out your application, but they also partner with groups who can help you in your home.
2. If you are filling the application out on your own, ask a couple friends to read it over. When you have a disability, you forget that the very same language you commonly use to describe your disorder is going to confuse the people determining the status of your application. For example, one of my readers advised me to write “my neck and head twist to the right and stay in that position” rather than “my neck is pulled to the right”. What does “pulled” look like? Give them a visual.
3. If you have a legal represenative who wants you to fill out the initial application on your own, is there an advantage to physically going to the SSA office for help? The short answer is no. The people who help you fill out the form are not the same people who decide if you are approved; they don’t send notes regarding the symptoms they personally observed when submitting your application.
4. If filling it out online, SAVE, SAVE, SAVE! I learned this the hard way when I found out the site shut down for maintenance every night. At 12:01, all of my remarks were lost because the website doesn’t save information automatically.
5. If you are having to start over from the beginning and are applying online, you should know that the government makes you wait 2 months from the date you received your federal hearing denial letter (or any denials beyond the hearing stage). Call your local office to see if the same holds true for walk-in applications.
6. For those who choose to fill this out on your own, you have control over what information goes onto your application. My first time around, a legal representative in Maryland asked me questions over the phone and then sent it in. To this day, I don’t know what she wrote. By doing this on my own, I was able to accurately describe my Cervical Dystonia symptoms and how they make it impossible to continue working and complete daily tasks at home.
MY HOPES: I hope you can learn at least one thing from my experience so you or someone you know doesn’t have to learn it the hard way. Never stop asking questions, even if you have to ask the same people the same question repeatedly. For 4 years, I didn’t know there was a Dystonia support group in my area, even though I asked my doctors repeatedly. 2 years ago, I finally got the answer. And know that when you call a resource like Courage Center, you may have to talk to 3 or 4 people until you find the right person.
My hopes for me are that I continue to ask questions and never give up. Unfortunately, the whole system for Social Security Disability is designed to “encourage” you to do just that. Considering the fact that they only give us 5 years to get approved, I was beside myself when I saw they were going to make me sacrifice 2 precious months before I could apply again. That’s part of their game. How many hoops will you choose to jump through? Let’s shock the system by jumping through them all, no matter how difficult they may be. We have to keep on movin’. It’s our only alternative.