Why Advocacy is Critical to Supporting Kids with Disabilities — Learn Patient Advocacy
I really wish I didn’t have to write this article. I wish that kids with disabilities and complex needs would get the support they require to not just survive but thrive. I wish they had the education, learning supports, therapy and career counselling needed to help them live their best lives.
Sadly, this isn’t the case and is the reason why advocacy is critical to supporting kids with disabilities.
Any parent, caregiver, teacher, medical professional and service provider will tell you there aren’t enough resources for kids with disabilities — especially invisible disabilities (autism, ADHD, anxiety, dyslexia and more). As a result, kids who need help are competing against each other for limited resources, with few, if any, actually getting the full support they need.
Not a week goes by when I don’t get a phone call, email or message from a parent or caregiver of a child with disabilities or complex needs who shares their story and the roadblocks facing their child. Many of these are artificial — put there by the system (insert system name) versus true roadblocks.
And this is why many of us parents and caregivers spend exorbitant amounts of time advocacy for our kids . Time that could be better used working at our jobs (if we’re lucky enough to have one while juggling the demands of our children), spending quality time with our kids or just having 10 minutes to ourselves.
I shudder to think what would happen if I stopped advocating for my child.
Personalize the diagnosis
One of the biggest challenges we have as parents is helping the system see the child behind the diagnosis . Too often limitations and assumptions are placed on the child because of their diagnosis.
I’ve seen this as both a sister and mother of two autistic individuals.
My brother spent years struggling with a medical challenge with doctors dismissing any concerns by saying he has disabilities, it’s expected. After some strong advocacy from support workers, my brother was finally referred to a specialist where he was diagnosed with a medical condition that has nothing to do with autism.
In this case the healthcare provider couldn’t see beyond the disability to care for the person. While I wish this was an isolated incident, I’ve heard too many stories from other families to know this isn’t the case.
With my own child, they spent years in the public school system unable to read. Once again, the assumption was their autism diagnosis was likely the reason for their reading difficulties.
As a mom who’s committed to helping my child live their best life, we paid for a private pysch ed assessment. Turns out my child is dyslexic — which once again has nothing to do with autism (as we know there are many autistic individuals who are veracious readers).
Armed with this new diagnosis I was able to advocate for my child to get literacy supports that are in line with their learning style.
In both these examples, advocacy was the only way to help the individual.
This is concerning as there are many children whose families don’t have the energy, skill set or time to commit to advocacy. So, what happens to these kids? They are often the ones that fall between the cracks as the system isn’t set up to support their needs.
When it comes to education, we have a wait to fail approach to supporting kids . With limited resources, educators have to wait until a child’s behaviour is too disruptive to offer supports. Yet many times behavioural issues are simply an indication of a problem that needs solving or need that is unmet.
Keep on advocating
While I wish I didn’t need to spend so many hours advocating for not only my child, but other kids with disabilities, I know that advocacy is key to shining a light on their needs and helping get support — even minimal.
This is why I’ll keep on advocating.
To help make meaningful change, we need more people to lend their voice to advocate for kids with disabilities and complex needs. This means listen to the stories of families, sharing these stories with decision makers and advocating for kids who are falling through the cracks.
But raising the volume on supports needed, hopefully one day we can help kids go from surviving to thriving.
Originally published at https://learnpatientadvocacy.com on January 6, 2023.