eSCAping Type 1

Personal experience has taught me that when most people encounter someone with a disability, they tend to do whatever it takes to make the situation easier and better. Like, not only will they help me walk, but they’ll carry all my stuff and bring me the most comfortable chair and make sure I’m completely content…

Now, obviously this isn’t the case every time. But you know who actually does the opposite of this? Who seems to make things even more difficult for people with disabilities on purpose? Who creates barriers for people who can’t walk to jump over? Our government.

This has absolutely nothing to do with politics or Medicare or the election or any of that. You see, now that I am officially receiving social security disability payments, I just think it’s time to write about the process it took to get here, since it’s one of those evil procedures that everyone with a disability will have to go through at some point.

Ok, so…

Before resigning, I needed some sort of plan in place. I wanted to get it all figured out before leaving my job. So, as any millennial would, I scoured the Internet for something on filing for Social Security Disability Insurance. And found nothing.

Between the endless amount of lawyer advertisements and a plethora of quizzes you can take to find out if you indeed qualify, there was really no guide on how to do it. I spent HOURS on the Social Security website, where I finally created a “my Social Security” account only to find out you’re not allowed to plan ahead! Right away, they ask for your last date of employment, and even though I knew the exact date my resignation would take place, I couldn’t enter a future date. And I wasn’t allowed to continue onto the next step until I completed that.

So, I sucked it up and called my local Social Security Office (even though one of my most-hated activities is talking on the phone). But the only way they could help me is if I made an appointment to physically go in AFTER my final date of employment (yet another one of my most-hated activities). Basically, my only option was to resign, chance not having an income, and just really hope I got approved ASAP.

Cool.

Assuming meeting with a Social Security employee was a major step, I put together a binder FULL of everything I thought I would possibly need: my birth certificate, marriage certificate, W2s from the past five years, my official diagnostic test, medical notes from my neurologist… Anything even briefly mentioned on the Social Security website, I found.

Guess how many times we opened that binder during my appointment?

Once.

So he could check the proper spelling of “spinocerebellar.”

I basically just watched him fill out the same online form I had tried completing months ago. Why they couldn’t have just told me that when I called, I have no idea. BUT at the end, he asked for banking account information and said I should be approved quickly since Ataxia is on the Compassionate Allowances fast-track list and I’ll be getting my first direct deposit…in 5 months.

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FUN FACT: No matter what, there is a five-month waiting period to start receiving SSDI benefits. Regardless of when you get approved, you have to be unemployed for five months before earning SSDI. Now, you might also qualify for Supplemental Security Income, which will give you money to survive until your first SSDI payment comes. But since I’m married to a working husband, I didn’t qualify. Apparently one income is just fine for a couple to live with for half a year.

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Silly me thought I was done. Nope, that employee can’t approve me! That’s when I got an 18-page packet in the mail, full of SUPER PERSONAL QUESTIONS that I am still angry about, that had to be filled out in detail to help “them” determine if I qualify for SSDI. Keep in mind, I have an official genetic diagnosis of SCA1, a recorded qualifying family history, medical notes from a neurologist, and I CAN’T WRITE, but sure, I’ll get this back to you ASAP.

Now, the last few pages – appropriately titled the “Work History Report” – were completely valid & exactly what I had in mind. It asked you to explain your credentials, your job, and how your disability is preventing you from completing the daily tasks involved. But I’m still not sure how the 15 pages leading up to that even remotely pertain to anyone’s ability to work.

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Here are some word-for-word examples:

– “Describe any changes in your social activities since your illness, injury, or condition began.”

– “Do you have trouble getting along with family, friends, neighbors, or others? Explain.”

– “How often do you go outside? If you don’t go out at all, explain why not.”

– “Personal Care – Explain how your illness/injury/condition affects your ability to do the following: Dress, Bathe, Care for Hair, Shave, Feed Yourself, Use the Toilet, Sleep, Other.”

– “Describe what you do from the time you wake up until you go to bed.” 

 

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Maybe those questions don’t seem that bad? They are giving me free money, after all. Sure. If you don’t think those questions cross a line in any way, try answering them IN DETAIL about yourself and then mail it to a group of strangers.

Now, the purpose behind SSDI is to provide an income for individuals who cannot work to make money for themselves. Essentially, the government is equating your disability to a job. I cannot tell you a time I’ve ever had an employer ask about my showering techniques during an interview, or whether or not I have a good relationship with my mom. Pretty sure they’d get in trouble for questioning how I “use the toilet.” And don’t most jobs prevent you from going outside a lot to begin with?

Plus, my disease is genetically hereditary, meaning I was born with it. Do they want a full life’s story? Granted, the space they give you to recount your entire day is literally an inch long. Oh, the answers I wanted to give.

Too bad money was at stake.

I mean, I get that they send that to every candidate. And I understand that their goal is to best determine the level of severity of the disability at hand… but something has to change. You know what’s more depressing than having to file for SSDI before you’re 30? Having to repeatedly prove, in personal detail, just how much you qualify for it. I have never felt more disabled in my life.

Just kidding! Because I THEN got a phone call for a doctor’s appointment that had so nicely been set up for me so that I could show them just how disabled I am! (Again, someone please explain the point in filling out that packet.) If for any reason I couldn’t attend that meeting an hour away at that specific date and time when I CAN’T DRIVE no big deal, but they probably wouldn’t be able to reschedule me for another six months or so, which pushes possible approval back further.

So, Cody took another day off of work & brought me to that doctor who performed THE SAME EVALUATION my neurologist conducts every time we meet. You know, that neurologist who provided detailed medical reports and a genetic testing diagnosis confirmation. But what does she know? Good thing the government trusts the opinion of this random doctor who cut my evaluation short when I couldn’t stand without touching my rollator.

And within a few days, I was approved for SSDI. I wasn’t notified or anything, but had to continuously check that dreadful “my SS” website. Whatever. I shouldn’t complain; I should be thankful it was a relatively quick and easy process that was approved right away.

But want to know the worst part?

There are SO MANY people with the same exact disease as me who have been denied SSDI for years. People with diagnosed Ataxia who have had to hire lawyers and obtain various medical statements and go to court and still get told “no.” It’s one of the most-discussed conversation topics on the Facebook group pages.

So, yeah, I’d say we have a problem here. And I’m going to be one of those annoying people who complain without offering a solution. But the first step toward solving any issue is drawing attention to it (hence International Ataxia Awareness Day), soooo I’m sort of helping? At least more than our government is helping people with disabilities, that is.