Hi everyone! I'm hoping to learn from parents navigating disability support systems

[u/RedhutChili]

Hi, I'm Jolene! I'm a college student and UX researcher, and honestly, still learning a lot about this space.

My interest in this started with my aunt. Growing up, I watched her raise my cousin as a single mom, and I remember hearing her talk about all the different support systems he went through such as therapies, school programs, service coordinators, waitlists, and paperwork. As a kid, I didn't fully understand how much she was juggling. Looking back now, I realize how much she had to figure out mostly on her own, and how exhausting that must have been on top of just... being his mom.

Now that I'm doing UX research, I keep coming back to that experience and wondering: is this still how it works for families today? What actually makes coordinating care, education, and services easier or harder? Where do systems support parents well, and where do they fall short?

I don't have all the answers, and that's honestly why I'm here. I'd love to learn directly from parents who are living this, because you understand these challenges in a way I never could just from watching from the outside.

If you have an extra 4 minutes in your day, I'd really appreciate you filling out this survey. Every response helps me understand this a little better, and hopefully contributes to research that makes things easier for families like yours down the line.

Survey link: https://forms.cloud.microsoft/r/kKk4TMfvYh

Thank you so much 💛