Transparency needed in AEA reforms

Imagine, before they reach six months old, realizing you have no idea how to parent your own child. That was our reality, with our youngest son, Cameron. Adopted at birth, we thought we had prepared for everything, but found ourselves in entirely uncharted territory. It was beyond terrifying.

We felt alone, and insufficient to the task, when Cam couldn’t roll over, couldn’t sit up, couldn’t even lift his own head. Private therapy, amazing as it has been, came with many precious months lost to an extensive waiting list; scheduling and availability remains a permanent headache, even here in Des Moines.

Through it all, our local AEA has been there for us, serving Cam, following him to school, helping coordinate his extensive team of miracle workers, and, if I’m being honest, teaching us how to parent a child with unique needs. There are no other kids with Cameron’s genetic difference. He is, as we say, a unicorn. His development, a man-made miracle.

The things Cam needs aren’t found at Target, the bed that keeps him safe at night doesn’t come from Homemakers, his chairs can’t be bought at Walmart. Time and again, AEA lifts us up, helping us navigate a world with no map. They do this for thousands of families, across our state.

I don’t know if the AEA system is efficient or inefficient, effective or ineffective. I only know the miracle it has been to my child. Any reforms need to be properly informed, and narrowly targeted, to protect our most vulnerable. They need certainty.

The current proposed changes have been negotiated in cloak-and-dagger fashion, far from the eyes of those most dependent upon this system. Reform, if necessary, must be publicly informed by the districts, administrators, service providers, teachers, and parents, most impacted and best informed. The state should create a commission, including members of each constituent group, tasked with gathering evidence, understanding perspectives, and creating proposals for reforms targeted at areas found to be inefficient or ineffective, while protecting what must be protected. This would be, for the first time, actual transparency in this process.

Kids such as Cam don’t vote, and can’t advocate for themselves. Most people don’t see them at all. The quality of their lives are entirely dependent upon leaders keeping them at the center of decision-making. If they are left behind, even amid the best of intentions, no one will hear their cries.

Christian Fasselius lives in Clive is the parent of an adopted, special needs child.