Navigating the Maze: Supporting Children with Disabilities and Planning for Their Futures

From Early Diagnoses to Financial Planning, Strategies for Empowering Independence and Securing Long-Term Support

I hate seeing parents get “punished” for trying to do right by their children. Sometimes it feels like the system is rigged, designed to make sure individuals with disabilities don’t get the support they need. As a result, parents who focus on helping their children become independent adults are often left trying to figure out how to pay for what their child needs if the child fails to thrive. Every person deserves to live their best life, with whatever support they need to make this happen. It shouldn’t fall on the parent(s)’ shoulders if for no other reason than most of the time the child is going to outlive the parent!

It’s a layered and complex problem. Those whose children are significantly impacted by their disabilities usually don’t have much trouble proving their child qualifies for services. Their challenges are (1) finding out what supports exist, (2) getting funded and not placed on a waiting list, and (3) once funded finding the appropriate staff. Not to mention how difficult it could be to get others to acknowledge the disabilities, no matter how severe, don’t (and shouldn’t) define the person.

Then you have what I’ve come to call “the messy middle”. It’s usually not very clear how impacted by their disability they’re going to be, at least not at first. I’ve had parents tell me they don’t think their children are “disabled enough”, so never applied for services. Yet they can’t live on their own, needing support with independent living skills like meal prep. Often many will also have severe executive functioning challenges, beyond what could be addressed by coaching.

Finally, there are those whose disabilities don’t appear (at least on the surface) to impede their way of life. They can live and work relatively independently, yet still need some support. For example, a lawyer or therapist who also happens to use a wheelchair or a museum curator who happens to be Autistic.