May 23, 2025
Inclusion Matters: Addressing the Silence Around Medically Complex Disability Care
This year, I set a personal goal to be bolder and braver. I want to have the courage to speak the hard truths, share what weighs on my heart, and face the reality that often goes unspoken. So, here we are, ready to dive into a difficult topic that many shy away from.
This world wasn’t designed for children like mine.
While there has been significant progress for those with “higher functioning” needs, children like mine frequently remain silenced and excluded from important discussions. Even in environments and programs that claim to prioritize advocacy and inclusion for all, many continue to be left out of conversations.
The most vulnerable.
Those who require lifelong care.
The forgotten members of society.
My daughter attends a state school designed for children with severe or profound disabilities, however you choose to label it. Many of her peers are medically complex. Several use wheelchairs full-time, some have feeding tubes or tracheostomies, and out of 36 students, only two are minimally speaking. Some with severe behaviors, like self-harm.
Several with health conditions statistically unlikely to reach adulthood. All of them require significant care.
Unfortunately, our children are often the first to be pushed around when it comes to resource allocation. Too often, they are overlooked because others claim they lack the knowledge, skills, or support to assist.
But we know the underlying issue is financial. It comes down to the costs associated with providing extensive care.
We faced this challenge when the first school district informed us that they could no longer meet my daughter’s needs. Now, we’re witnessing it again as our state school considers consolidation. Which if approved, will have many negative consequences in our children’s lives.
The worth of our children’s lives is being quantified in terms of dollar signs.
During the recent State Board of Education meeting regarding consolidation, a board member raised the question of whether hospitals had been considered as placement options for our children. HOSPITALS.
In the year of 2025, a mere 38 years after the last major institution was closed, it’s shocking to hear someone in power propose this. I sincerely hope he’s not meaning as if we’ve considered RE-INSTITUTIONALIZING our children. This is deeply disturbing and a slippery slope.
When we, as parents, speak out about these tough realities, we often get labeled as ableist while our children remain marginalized.
I’m exhausted from this fight to help society see the true value of our children regardless of their financial contribution to society and challenge this narrative. Our children’s stories and lives deserve to be heard, even when they cannot advocate for themselves.
