Why the Lack of Services for Kids With Disabilities Is a Silent Crisis

I’m tired. Tired of fighting, tired of artificial obstacles and tired of jumping up and down, trying to raise awareness for a group of individuals who are invisible.

Despite the fact this group represents 18.5% of children under 18 in the United States and roughly 17.5% in Canada, the services, programs and funding they need to succeed continue to decline.

Who is this group that, while representing almost 1/5 of children, remains invisible? Kids with disabilities.

As a mother of a child with disabilities and an advocate, I spend a significant amount of time advocating for kids whose voices are rarely heard and repeatedly forgotten. I often feel like I’m the lone voice screaming for change.

Because advocating is frustrating and thankless work, the disability community tends to be less vocal and less visible than those supporting other vulnerable populations. The reality is many parents and caregivers are overwhelmed with the challenges of raising a child while others have given up the fight due to too many obstacles in their way.

The current COVID-19 pandemic further amplified how the needs of this community have been neglected.

I’ve read numerous articles about funding support and programs to help seniors, the homeless population, individuals with addiction issues and other vulnerable people who have been impacted by COVID-19. But finding information on supports available for families of kids with disabilities is scarce.

Lack of services

A common theme across Canada during the pandemic continues to be the lack of resources available to support these vulnerable kids. This includes speech-language therapy, behavioral intervention therapy, respite programs, physical therapy, autism assessments, and other important resources.

Even in “normal” times, families encounter long waitlists and extraordinary costs, resulting in many kids being unable to access the services they need.

So why does this matter? When individuals with disabilities are not supported as children, their needs compound as they reach adulthood.

This can result in underemployment (unable to reach their full potential), mental health issues (having gone undiagnosed or supported), addiction and other challenges that impact all of society. But for some reason, politicians, health authorities and governments focus on the loudest and most visible (but not necessarily most important) crisis of today, making little effort to prevent the crisis of tomorrow.

Broad benefits

Anyone who works in public health will tell you it’s more affordable to prevent a crisis than extinguish a crisis. So why are we not investing more funding, resources and energy into supporting kids with disabilities?

Perhaps not enough parents are speaking out — and those of us who do aren’t being heard.

There is no shortage of research, statistics and stories validating the lack of resources and programs to support kids with disabilities. In many parts of Canada there are long waitlists for publicly funded autism, complex development disorder, speech therapy, physical therapy, occupational therapy and other assessments that are required before a child is able to receive support.

As such, it is so easy for a child to fall through the cracks. This happens when a child ages out of the waitlist (example — many publicly funded speech-language programs are for pre-schoolers, yet the waitlist for assessment is often 9-12 months and then a second waitlist to receive therapy). Looking at the speech-language therapy example, children entering the school system (in Canada) are assessed in kindergarten. The speech-language therapist then has to decide who can receive therapy, not who needs therapy. In many schools, the list of children needing speech therapy is significantly greater than the capacity of the therapist.

Future prognosis

If you’ve made it this far, you might be looking for the silver lining. I wish I had one.

Yes, there are educators who go above and beyond to help students with disabilities and therapists who are able to make incredible changes with the huge caseload they support. But when you talk to these rock stars, they will tell you how frustrated they are, how they know more needs to be done and how upset they are that they can’t give the amount of support needed.

As for me, I continue to fight. I fight for my children and for all the children who are being forgotten.

And I ask that you lend your voice to this fight, in any way you can. By supporting kids with disabilities, we can create a stronger future for everyone.