When You're the Parent and the Case Manager: The Juggle of Disability Life

Parent First. Advocate Second. Case Manager Always?

If you’re raising a child with a disability, rare, or undiagnosed condition — you probably know that parenting means more than love, routines, and bedtime stories. It also means running a spreadsheet of appointments, chasing reports, coordinating funding, emailing therapists, and explaining your child’s needs again (and again... and again).

It’s like becoming a case manager — without a job description, lunch break, or annual leave.

So Many Hats. One Tired Parent.

We’ve worn the hats. Advocate. Researcher. Speech assistant. Plan nominee. Taxi driver. Medical translator. Therapist. And of course, the parent — the one your child comes home to, the one they trust and love.

But when systems are confusing, waitlists are long, and everyone wants something from you… it’s easy to feel like you're barely keeping up.

Here's What Helped Me Cope

• Creating a care calendar: I use one master calendar (paper or digital) for therapy, NDIS reviews, and appointments. It sounds simple — but it helped me stop missing things and seeing the week as a whole, not chaos.
• Designating ‘no admin’ zones: One day a week, I don’t call providers or open the NDIS portal. It gives my brain a break.
• Accepting that I can’t do it all: I stopped pretending I was a super-parent. I’m just a mum doing her best. Sometimes, that means outsourcing help. Or saying “not this term.” Or even letting the email wait until Monday.

Some Days, It’s Too Much — And That’s Okay

If you’ve ever cried during an NDIS plan review or walked out of a school meeting feeling invisible — I see you. You're not alone. This is hard. And it’s okay to say that.

Your child is lucky to have you — not because you’re doing everything perfectly, but because you love them fiercely in a system that wasn’t built for them. That’s what matters most.

💬 Let’s Connect

Are you parenting and case managing at the same time? What helps you stay grounded? We’d love to hear from you in the comments or over on Instagram.

With care, Maya & The RareWear Team 💜