The Advocacy Tightrope

In student advocacy, partnering with the IEP team is a key concept. However, some days it feels impossible to straddle the divide between my child’s accessibility needs and the school’s ability to provide timely, accessible materials. When I’m feeling overwhelmed, I ask myself:

What exactly is the issue?
What does his team believe is the best answer?
What does my child believe is necessary?
Is “good enough” okay, or will this problem seriously impact his future?

Last year, in science class a USA Test Prep login was provided to each student to study for the end of course exam, but the information was not accessible to my blind student. (Yes, you read that right: One of the major test prep suppliers, which is under contract with many school systems, does not provide materials that are accessible to the visually impaired.)

After talking with USA Test Prep, and the State Board of Ed’s special education division, I met with my student’s IEP team and it was decided that the school would partner with the state to create the accessible materials. His classmates already had access to test prep, so speedy delivery was critical. This accessibility issue took a lot of my time and energy and ultimately my son received the materials (late) and chose to take the test at the same time as his peers. He did really well too!

Kids with visual impairments have the right to receive accessible materials at the same time as their classmates. Those who do not are at a severe disadvantage, making it difficult to compete with sighted peers for academic honors, college placement and careers.

The battle for accessibility is heart-wrenching. Our students deserve the proper execution of FAPE and IDEA and the broken processes need to be addressed at a local, county, state and federal level. But, as parents of VI kids, we know the truth: complaints tend to trickle downhill and impact the workflow and attitudes of the humans who work directly with our students. Unfortunately, these support people are also victimized by the broken system. In most cases, they are doing their absolute best and are not receiving the financial support and/or executive decisions to get the job done right and/or to fix the underlying problems. Over the last six years, I’ve walked a tightrope of advocating for my student and maintaining a close, respectful relationship with his team. I am always telling the team how much we appreciate them, and I even bring caffeinated drinks and chocolate to our meetings.

Then, last week, while discussing yet another big accessibility issue with my therapist, she said: “Kim, it’s time.” We went on to discuss how continuing this balancing act was wearing me down, having an impact on my health, and placing my son in the demoralizing position of advocating for himself only to be repeatedly pacified with short-term, last-minute fixes that do not address the real problems which require solid, long-term solutions. Yes, it’s time to file a formal complaint, and my husband and sons agreed.

The breaking point was hearing my son say, “I feel like the school is punishing me for being blind.”

Finally, after six long years, I downloaded and completed a 4-page “formal complaint” form, attached 18 pages of relevant emails and meeting notes, and delivered 2 copies: 1 to the county and 1 to the state. Then, I let out a long sigh of relief and ate apple pie (self-care, lol). Now, we wait, while hoping and praying that the state will require implementation of a long-term plan with adequate resources and accountability.

If you or someone you love has had to take a difficult stand to advocate for materials or services, please comment below. I support you and would love to hear from you.