Sep 09, 2013 3 Share

The Delegate from the State of Confusion

People at meeting holding question marks in front of their faces.

First published on February 6, 2012.

The delegate from the State of Confusion has the floor. Well … actually, she’s on the floor in the fetal position with her fingers in her ears, saying, “la la la la la” in an effort to block out the voices.

I attended a (too much) information session on disability services this week, and quickly became overwhelmed. This is exactly why I avoid these types of information sessions to begin with. Why, oh why, are transition services and adult benefits so complicated? On the one hand, I suppose the “disability community” should be grateful that there are so many service providers out there. But on the other hand, the multitude of resources makes me have little confidence that I’ll have any chance of getting the formula right. Even if I were to get it right, how would I know?

The fact that I became overwhelmed at the information session was in no way the fault of the presenter. The presentation was focused on a specific topic that was easy enough to digest, even for me. It was the dreaded Q&A portion of the evening that had me eyeing the space under my desk, and wondering if I would still be able to fold myself into the duck-and-cover position I so fondly remember from elementary school.

The other attendees that evening all seemed to be further along in the disability life cycle than I was. Most were parents of adult children already receiving some sort of disability benefits. The Q&A portion of the evening led to a discussion about the difference between SSI and SSDI. There was mention of Section 8 Housing Vouchers and the vast number affordable units left unoccupied in the area, but the units came from a different source than the vouchers, so you have to go to another acronym to see about units, and you could use vouchers to pay for affordable units if the moon was full and the earned income did not exceed a certain level that would lower your monthly SSDI amount … Are you under your desk yet?

I have become quite dependant on my friend Google when it comes to attempting to research all of this. I can’t say that I’ve found that to be tremendously enlightening. It’s as if there’s a conspiracy among websites: One website provides basic information, and points the user to another website for “more information.” The next website points to another, and the next back to the initial site I started with. (Incidentally, this looping conundrum is the reason Autism After 16 exists. We’re trying to break that cycle, and get down to what you really need to know. For explanations of the federal programs mentioned above, read our article on Public Finances.)

To further complicate my own confusion, living in our Nation’s Capital puts me in a border state, so to speak. Within four miles of my home, I can be in Virginia or Maryland, depending on which way I turn out of the driveway. This complicates matters because different states have different stuff to offer. The vast majority of informational emails I receive from Cameron’s school in Maryland don’t apply to residents of DC. But maybe they do. So I go to the website link in the email, which points me to another website for more information.

I must bring the column to its conclusion. I’m finding it very difficult to type with my fingers in my ears. 

Comment Options


Great Article

This is a great article and Julie Van der Poel is very aware how important it is to help her child with ASD. And a great organization.Treatment and Learning CentersRockville,MD

I Agree... we will succeed

Thanks for your comment. I agree we will be successful, and let's hope our success makes it easier for those that follow us on this journey.


State of Confusion

If it helps, I am a social worker in Maryland experiencing the same barriers. I want to encourage you not to let the system stop your efforts. We will succeed. Our efforts are not in vain.