Unbreakable Journey

Tuesday’s Child: Seventh Circle of Hell

Posted on by Meg Currell

My daughter turned 18 a few months back. Long before she aged into majority, a wonderful old friend who happens to be a social worker with the state took me aside and gave me the inside skinny, the keys to unlocking the complexities of the social services system in this the “47th state”. I was grateful for the advice, and put on my to-do list all of the things she told me to do.

and then…didn’t.

It’s not that I ignored her. I procrastinated. I had other things to do. I was working full-time at a job that sapped all of my mental energy, and couldn’t bring myself to look at the pile of things I was supposed to do. To be fair, I had a couple of other things to do, but that’s beside the point. I’m making excuses.

Then she turned 18. And I kept thinking “okay, I should do this now…”

It’s May. I have finally started the process. My daughter is now–once again–”in The System”. Oh, yes, she was once fully embedded in The System. Born with a disability, she was on the state’s radar until the day I married her step-father. At that time, we were informed that my husband’s income made her ineligible for services. Some reputable and experienced voices have told me otherwise, that because my husband didn’t adopt her, his income didn’t count (or something–I’m paraphrasing), but I was so incredibly relieved to be OUT of The System that I simply didn’t put up a fight.

Now I remember why I was so relieved.

My first call was to Social Security, to sign my daughter up for SSI. That part went simply enough, although the first week brought a wicked battle of phone tag with resulting Official Letters of Doom from the state informing us that, because they hadn’t been able to get hold of us, we were ineligible. Their automatic letter system has an itchy trigger finger and, apparently, is in bed with the paper industry. Oh, if environmentalists only knew the amount of paper wasted on letters telling applicants that they aren’t eligible, then that they ARE eligible, then that they need to submit a lock of hair and sworn testimony from their lactation specialist that they have never ever jaywalked on Tuesdays, then, finally, that they are banished forever and ever from state services because the social worker missed our return phone call.

Forever and ever, that is, until the following Tuesday, when we finally spoke to the social worker, who said “oh, those letters are sent out automatically. They don’t mean anything.” Yep. Greenpeace needs to know about these people.

The next agency we had to call was the Department of Rehab Services, or DORS. Again, I know for a fact my old friend’s advice would have served me beautifully at this moment, but I am a closet imbecile, so I sallied forth on just my wits and a general phone number. Our first phone call went a little like this.

“Hi, I have a daughter with a disability and need to get her into the DORS system.”

“Okay, what’s your daughter’s disability?”

“Brittle bones,” I try not to give the Latin name, as it tends to make the heads of people outside the OI world explode.

“Brittle bones? That’s a disability?”

“Yes,” glad they can’t see me rolling my eyes.

“Well, what can she do for herself?”

“Well,” I say, trying to set aside my annoyance and answer as thoroughly as possible, “She can do a lot of things for herself….but she can’t walk, and she can’t reach things abover counter height, and…”

“Hold on, let me transfer you.”

Their hold music is abominable.

“Hello?”

“Yes, hi, I have a daughter with a disability, and I need to get her started in the DORS system.”

“Okay, what is her disability?”

Sigh. “She has brittle bones.”

“That’s a disability?”

“Yes.”

“What services were you looking for?”

“Well, I’m not sure what services are available…”

“Does she need home services or VocEd?”

“Um….she’s going to university in the fall, and I know she’s going to need a PA…”

“Hold on, let me transfer you.”

The hold music isn’t any better the second time.

“Hello?”

“Yes, hello, I have a daughter with a disability, and I’m trying to get her signed up with DORS.”

“Okay, what is her disability?”

“She has brittle bones.”

“That’s a disability?”

“Yes, that’s a disability.”

“Well, what can she NOT do?”

My sighs are getting less silent. “She can’t walk. She uses a wheelchair for her primary means of getting around.”

“Oh, she’s wheelchair bound?”

“I prefer to say she uses a wheelchair, but you’ve got the general idea.”

“Okay, let me transfer you.”

Hold music now sounds like the most obnoxious screamo speed-metal goth-punk John Cage knockoff ever created.

“Hello?”

“Hi, I have a daughter with a disability, and I need to start the process of getting her in the system.”

“Oh, right, let me do your intake form. Hold on.”

FINALLY! I thought I was in an infinite loop of disability services applications. A DORS mobius. DORSius.

“What’s your daughter’s disability?”

“Brittle bones.”

“That’s a disability?”

My teeth are now gritted tightly. “Yes,” I manage.

The rest of the form is standard-issue name/rank/serial number stuff. In five minutes, she had asked everything necessary, and told me I would receive something in the mail. I couldn’t hang up fast enough, so great was my relief that I had achieved the goal of getting my daughter “In The System.”

The next day, while in the drive-through at the bank, my phone rang.

“Hello?”

“Hi, this is Susie from DORS.I have a few questions for you.”

“Okay.” I fumbled to put my cellphone on my shoulder.

“All right, um…what is your daughter’s disability?”

“Brittle bones.”

“That’s a disability?”

THIS is why I was so glad to be out of the social services racket. THIS is the kind of phone call I dreaded, the kind of individual with a limited understanding of disability. Oh, I understand that they must verify my daughter’s eligibility, that they can’t just give money to any nut job who calls up. But…really, is the initial phone call the time or place to make the final judgment? I mean, all of the paperwork will require doctor’s notes, home visits, all kinds of steps designed to verify that my daughter has a physical disability. Having the receptionist quiz me over the phone about my daughter’s diagnosis doesn’t bring DORS any closer to verification. Any nut job can lie on the phone.

There is a real downside to being In The System. This is it. Having state agencies skeptically question the very things that alienate you from society, having to prove that you’re disabled “enough” when you can’t even get out of your house without help, is demeaning. Degrading. Shaming. But I will press on, push past the dragon at the gates to get the services my daughter needs. In the meantime, you all get to hear my complaints and triumphs, of which I’m sure there will be more than a few.

Like today, when I called DORS back and spoke to a lovely woman who gave me all kinds of information I hadn’t heard before, and pointed me in what I hope is the right direction. There are wonderful people hidden everywhere, you just have to keep looking.

Meg Currell is dreading graduation day and lots of other landmarks coming up for her daughter.

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About Meg Currell

Mom to a grown son, a teenage daughter with osteogenesis imperfecta, and a teenage stepson. Married to a devoted husband. Doing the best I can with the tools I've been given.

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