TEFRA, Medicaid Waivers, and The Man

Dear Government of the State of _________,

I recently had a visit at the Social Security office. See, I was there to get my son denied SSI, so we could apply for the Medicaid waiver.

We waited in line for 2 and a half hours. With a feeding pump.

When our name was called, the woman on the other side of the counter from me asked why I wanted to be denied. I explained my situation to her, and she asked, “Well, why don’t you go have you some more babies?”

Shocked, I asked, “WHY?!”

She responded and told me that if I had more children, I could not only get SSI for my son, but I could also receive full Medicaid because they would consider us “poor.”

Let’s start with the basics, OK?

I have no uterus, so therefore there are no babies coming out of there. Also, we spent an exorbitant amount of money adopting to begin with.

We are also faced with some tough dilemmas.

My husband manages a hotel, and I teach college. One would think that we would have plenty of money lying around, right?


Our son is medically fragile. He takes 8 medications per day, has a feeding tube, sleeps in a hospital bed, and is sick most days. Our medical bills alone would be more in one year than I bring home in salary.

Taking away or even considering taking away TEFRA/Katie Beckett/Deeming Waiver/Medicaid waiver is a death sentence. For, if we did not have this, we would have to choose between paying our monthly bills, or keeping our child alive.

Is that fair?

I filled out the waiver. Do you make regular Medicaid recipients fill out a DMA-6? Do you know what that is? It’s a form that says your child is so sick, that if he is not taken care of by the parents, he will be placed in a nursing facility. It’s quite humbling to have to sign that form year after year after year. This year’s waiver hit an all time high on page count at 129. One Hundred Twenty-Nine pages of information that will be presented to some case managers who will then get to arbitrarily decide if my son is worthy of help.

Yet, we do it. We file, and fill out, and worry.

While you sit at your fancy desk and budget cut your little heart out.

When you cut out the waiver, I hope you can bring yourself to picture the families who you are sentencing.



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