Our Story: A tale of two disability support programs

LN StairsDickens wrote “it was the best of times, it was the worst of times”. In the past 48 hours, I’ve experienced when a system designed to support individuals with disabilities functions optimally and when it functions absurdly. 


Readers of this blog may come to expect an annual post about Juliet’s IEP, which happens each year around this time. This year’s IEP was essentially the polar opposite of last year’s experience–which is remarkable considering this was our first IEP in middle school.

I’m not sure about you, but I dreaded when my firstborn would enter middle school. In my experience, middle school is a time of temporary insanity as children go through the horrors of puberty. Therefore, my hopes were not high for our first IEP meeting.

My concerns could not have been more unfounded.

From the beginning, Juliet’s school, Meyzeek Middle, has sought to provide Juliet the support she needs to meet her IEP goals and excel generally as a sixth grader. Her report cards show she is achieving academically, maintaining around a 3.0 average. But, it was the impact her supports have had on her class experience in general that was unanticipated.

The school’s leadership provided Juliet a one-on-one aide. At the mid-year parent-teacher conferences, it was discussed how sometimes Juliet’s conversations with her aide can be distracting, as the aide guides Juliet in working through the class work. At this meeting, however, those quiet conversations have just become the new normal for the classrooms, and her aide is seen as a valuable resource not just for Juliet, but for other students needing some extra assistance.

We have advocated from the beginning for the most appropriate educational setting for Juliet. And, from the beginning, that has been in an inclusive setting with the typical classroom as much as possible. So much so that as she completed elementary school, her education team recognized that Juliet learned better in the typical classroom than when pulled out into the resource room.

Juliet being new to Meyzeek, it was understandable that her level of inclusion was seen as an experiment, given all the class changes and tougher academic work. By the time of the IEP meeting, however, Juliet’s success had given her team reason to reconsider whether more inclusion would be beneficial for other students with IEPs.

Suffice it to say, her mother and I were pleasantly surprised at the positive mood that imbued the entirety of the meeting. Juliet will enter 7th grade next year with the same level of inclusion and supports.


As with IEPs, I have written before about the absurdity of the Medicaid system. But the experience this week is positively Kafka-esque.

Annually, I must go through the process of “re-certifying” Juliet for her Medicaid waiver program. It is not enough to simply answer “yes, she still has Down syndrome.” Instead, I have to burn a morning visiting our local state Medicaid office to go from one waiting area, to another, before sitting across from a case worker as information is entered into the system. I did this same silly routine just in December.

And, then we were told in mid-January that Juliet had been dis-enrolled from Medicaid.

The reason?

We had not provided a statement as to her parents income for the last three months.

Why did we not do that?

Because the letter notifying us of the need to do this arrived after the December meeting, where I thought I had already provided the requested information, to include our tax returns and income statements.

So, I returned just six weeks later to our local state Medicaid office with the requested income records. I again went from one waiting area to another to finally sit across a desk from a caseworker who again entered our income information into the system.

But, here’s the thing, for qualification for Medicaid, the only relevant income is that of the individual qualifying for Medicaid.

Juliet is twelve years old. She has no income.

After sitting there for an hour as the caseworker entered Juliet’s mother’s and my income information, she exasperatingly said:

You know, the old system didn’t require this, but ever since moving over to the new computer system, it now asks for this information. And, after entering all of it, before I hit submit, I check a box that says “disregard” all this information I’m now having to enter.

Later that afternoon, Juliet’s therapy clinic would call to cancel her appointments because she currently remains dis-enrolled from Medicaid.

The picture above is of the staircase in the state Medicaid office–an ornate, turn-of-the-20th-century building that used to house the administrative offices for the L&N Railroad Company. I believe it has nine floors. The same number of levels as Dante’s Inferno.

Not a coincidence in my mind.


One last point to make all of this relevant to the mission of this blog.

Those with Down syndrome are counted as “burdens” on the public health system and cited as reasons why they cannot be allowed to immigrate to certain countries. Couples very often cite the “burden” they fear that their child with Down syndrome will be on their families and marriage.

Medicaid is supposed to be a social support program to help those in need live better lives.

The absurd, completely unnecessary paperwork hell it puts its enrollees through on a yearly basis, though, should be seen as a burden.

Perhaps if that administrative burden was lightened, and the state made reasonable efforts to ease its enrollment and recertification process, then parents, doctors, and policymakers may have a different view of how relatively “burdensome” living a life with Down syndrome truly is.

My daughter is excelling when the public supports program operates as it should. She’s being denied those supports when another public supports program does not operate.

She’s not the burden. The absurd system is.


  1. Yup. Don’t get me started…


  1. […] Lyndon Johnson’s institution of Medicaid arguably could be cited as the program that has most benefited individuals with I/DD. It has […]

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