08/09/2026
Let’s talk about it. As an advocate and a parent, I see families navigating this over and over again: Medicaid renewals, OPWDD eligibility and recertifications, evaluations, documentation, applications and paperwork that can sometimes feel like starting from the beginning all over again. And I understand why systems need eligibility requirements, documentation and accountability. Those things matter. BUT we also need to be honest about the burden these systems can place on families. When a child has a documented disability and continues to have significant support needs, why does the family sometimes have to repeatedly prove what has already been established? Parents are already coordinating schools, therapies, doctors, specialists, services and everything in between. They shouldn’t have to become experts in navigating multiple systems just to make sure their child continues to receive the support they need.
And if you’ve ever felt overwhelmed by this process, you are not alone. This isn’t about blaming the people working within these systems. It’s about asking whether the systems themselves can be simpler, clearer, more coordinated and more family-centered.
Could information be shared more effectively?
Could documentation be carried forward when appropriate?
Could families receive clearer guidance about what is actually needed?
Could we reduce the amount of time parents spend proving and re-proving their child’s disability?
These are questions worth asking.
Because families shouldn’t have to spend so much energy proving their child needs support. The systems should work better for the families they’re designed to serve. So let’s talk about it.
What has your experience been? What would you change? Special Perspective Advocacy