Paperwork, Paperwork

The one thing people don’t tell new parents, especially those who have to spend time in the NICU, is your kid will have loads of paperwork.

My children spent an average of 3 months in the NICU at Crouse Hospital in Syracuse. Because of this, they qualified for Social Security benefits. As if the day-to-day treatments and goings on weren’t mind-blowing enough, us sleep deprived parents had to deal with gobs of paperwork.

Then, when the kiddos came home and I went back to my day job, we no longer qualified for SSI.

If this happens to you, here’s a bit of advice: SAVE THE LETTER SAYING YOU ARE NO LONGER ELIGIBLE.

Why? Well, let’s fast forward to today…

We are in the process of filing for a Medicaid Waiver for Theodore based on his disability. The one piece of paperwork I didn’t have (or can’t seem to locate in the boxes and files we have on Theo) was that final letter. We are hoping that it says that, yes, in fact, we were no longer eligible because of my going back to work. If for some reason it says Theo was no longer eligible because he was not considered disabled, we have to go back and file MORE paperwork proving he is eligible.

And doing so is like a kick in the gut.

Fingers crossed that the final letter is about making too much money.

Either way, this process stinks. We need help. Theo needs the help. But filing out the paperwork, listing all the things Theodore can NOT do, is draining on so many levels.

So, parents out there and those parents to be, just another piece of advice: KEEP those letters even if you think you may never need them.

They could come in handy.

Until next time friends…



2 thoughts on “Paperwork, Paperwork

    • update: we just got approved but since it’s a holiday, I have to call them tomorrow to get the details. But we’ve been trying for this since 2010! (Another organization fumbled, if you will, our paperwork and then told us we were on a wait list…which didn’t exist!) Hang in there.

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