Autism mom holding the hand of her child with autism.
Credit: Zara Photo Factory / Shutterstock
State Child Advocate Sarah Eagan

A paper came from my daughter’s Kindergarten the other day with a list of questions. What motivates me? (Meaning the kindergartener, not the mom). What are my favorite activities? What am I good at? What do I need to work on?

I sat with the sheet at dinner and my second grade son shouted out the answers I should write: “Hershey Bars!” and “She likes to go outside on the swings,” and “She is good at babbling,” and “she needs to work on sitting quietly, because she shouldn’t babble all the time.” Fair enough. His sister has Autism, developmental delays, and special health care needs, and though she does not talk yet, my son and I were able to fill out a whole sheet about what makes my daughter who she is.

She loves to be barefoot and she loves to put her toes in the sprinkler. She loves to sit on the swings in the backyard while I play Motown music through the portable speaker and she rocks back, pumping her legs, scrunching up her face to the sun as my heart swells with joy.

She doesn’t need me to push her on the swings because she learned how to do it at school. Just like she is learning to hold her crayon and wait her turn. She is learning to flex her finger to point to something she wants, and to try to make a sound with her own lips when she needs something. She can do all of this because someone taught her and because she is capable of learning.

Though we have some days marked with panic or grief, my daughter is a joy to our family. In many ways, her progress marks our progress as a society. Once upon a time — and not too long ago — a child like Grace may have been shut away in an institution due to assumptions quickly drawn about what kind of life she could lead and where her care should be delivered.

And yet as a state we are revisiting the issue of where children such as Grace belong. After decades of hard fought gains for children with special needs, a Connecticut trial court, in a ruling about the real inequities in public education, veered into a philosophical discussion on the merits of investing educational dollars in children who will purportedly gain little or no benefit from special education. But the court’s decision posits an alarming and false choice between quality education for typically developing students and quality education for children with disabilities.

The court establishes the justification for its query by first describing the “staggering” sums of money spent on special education. Acknowledging the law requires children with disabilities to receive a free, appropriate public education, the court narrows its focus to those children it describes as “severely disabled,” lamenting that “the reason so much [money] is spent is because someone has to take responsibility for saying that it shouldn’t be, and no one is willing to do it.”

The court points to the financial burdens borne by Bridgeport Public Schools, where the taxpayers fund education for “roughly 300 children that might be called multiply-disabled” and “incapable of being educated within the system,” an apparent reference to the “out placing” of children into private special education programs.

Besides being a parent, my day job at the Office of the Child Advocate (OCA) is to ask questions about the services the state funds for vulnerable children.

So I ask the following: who decides what potential a child with disabilities may possess? And when is too early to cut children off from the possibility of learning that almost always surely exists, even for the “severely disabled?” Is our wisdom about children with disabilities so great now, so advanced from our reliance on segregation and institutionalization, that we are confident we can make sage or even prophetic decisions about children’s capabilities, dividing learners between those who can and those who cannot?

I would add to this list my skepticism that the 300 children Bridgeport has “placed out” are “incapable of being educated within the system.”

Data the OCA previously obtained from large school districts in Connecticut shows that the majority of children who were “placed out”, and yes, at considerable expense, were children classified as “emotionally disturbed.” And while some children have organic psychiatric disabilities that require highly specialized care, many “emotionally disturbed” students are victims of abuse or neglect, were witnesses to violence or other traumas, or have experienced significant deprivation as they accumulated academic deficits.

Many children may have long lacked appropriate services, and by the age of 7, 11, or maybe even a bit older, developed reactive, aggressive or self-injurious behaviors for which they did not or could not receive appropriate intervention and care. At some point the choice was made to “out place” the child.

And while some “out placements” provide valuable support to children, I would challenge those who conclude such expenditures and judgments are inevitable for the “multiply” or “severely disabled.” Attention to trauma-informed service delivery for youth with vulnerable histories and coordinating care between schools, community providers, and families would go a long way toward improving outcomes for struggling children and reducing overall costs for districts.

System building can also be done for children with developmental disabilities, the second most likely group of children that were “placed out” by school districts — and some districts are already working to build a high-skilled continuum of supports and personnel to maintain children with disabilities in the least restrictive environment.

More questions: What if we pooled supports across town lines? What if we conducted regional blueprints for meeting the needs of children with varying disabilities? What if the districts were supported to help children grow in all areas of development? What if we expanded the State’s Birth-to-Three program to ensure all children with developmental delays and their parents were offered support to set them on the right path for school? What if high quality preschool was available for all children? Are these investments and transformations we cannot afford? Or will these efforts help educate all of our citizens, actually leaving no child behind?

Inequities highlighted by the court are painfully real, and children have a civil right to quality education. But the answer is not to sort our youngest citizens into the categories of those who can and those who “never will.”

We cannot go down the road of wishing or willing children with special needs out of our school and home communities; we cannot bear as a society the notion that caring for those that depend on us is a luxury we cannot afford. As a public advocate, a lawyer, and a mother of two young children, I know we can and must invest in a service system that is accountable — as we all are — for honoring the inherent dignity and worth of all human beings.
Like the court, I do not yet know the full potential of my children. I come to the last line on my child’s kindergarten worksheet — and this time I don’t need her brother’s help for the answer. It reads “I want my teacher to ______.” I pick up my pen and write: “Believe in me.”

Sarah Eagan is the State Child Advocate.

The views, opinions, positions, or strategies expressed by the author are his alone, and do not necessarily reflect the views, opinions, or positions of