Future-Proofing Your Child with Disabilities: Why Planning Early Is the Kindest Gift You Can Give
If you're the parent of a child with significant medical, developmental, or intellectual disabilities, there are probably days when just making it through to bedtime feels like a monumental win.
So when someone suggests you should also be thinking about guardianship, government benefits, estate planning, and long-term housing—on top of feeding therapy and managing the IEP—your first reaction might be: "Sure, right after I clone myself and hire a team of assistants."
I get it. And I promise, this is not a guilt trip.
But here's what I learned from my conversation with Maedi Tanham Carney, founder of M&L Special Needs Planning and the nonprofit Integrated Living Opportunities (ILO): planning for your child’s future doesn’t have to be overwhelming—and in fact, doing a little now can save you a LOT of stress and chaos later.
This is especially true for families raising what Maedi calls “lifelong dependents”—children with disabilities that will affect them into adulthood. But honestly? It’s helpful for every family raising a complicated kid.
Here’s the good news: there IS a roadmap. And you don’t have to do it all at once.
The Special Needs Timeline: What to Watch For and When
Maedi’s special needs timeline breaks down the key “pressure points” where you’ll need to make some decisions and take action:
Age 3 – This is when the IEP (Individualized Education Program) process typically begins. Set goals, monitor progress, and start thinking about the long game.
Ages 14–16 – This is when transition planning should begin. Even though legally it starts at 14, many schools don’t bring it up until 16 (or later), so you’ll want to advocate for it early. This is about what happens after high school—and spoiler alert: the school system may not have a clear plan.
Age 18 – Legally, your child is now an adult. That means they get to make their own medical and financial decisions, unless you put the right documents in place. For some families, that might mean full guardianship. For others, it might mean a HIPAA release and a durable power of attorney. Either way, it’s a crucial time to act.
Age 21–22 – This is when many school services end. It's also when you'll want to apply for adult disability services and waiver programs, which can provide funding for housing, job support, and more. These programs often have long waitlists, so applying early matters.
Start With What You Can Control
One of Maedi’s most grounding takeaways was this: “All you need to do this month is ONE thing.”
So what’s the first thing?
Get your estate planning documents in order. This includes:
A will
A special needs trust (so your child can inherit money without losing access to SSI and Medicaid)
A letter of intent outlining your wishes and your child’s preferences and needs
And please, find an attorney who specializes in special needs planning. Not just any estate lawyer. Maedi recommends starting at www.specialneedsalliance.org—a great resource for locating vetted professionals in your state.
A Plan Is a Gift (Even If It’s Not Perfect)
As Maedi put it, failing to create a plan means the state gets to decide who becomes your child’s guardian and what happens to their benefits. Nobody wants that.
And you don’t have to do it perfectly. You just have to do something.
Two things you can start with this month:
Schedule a meeting with a special needs attorney. Even if the meeting’s a few months away, putting it on the calendar is a powerful first step.
Create a documentation system. Paper binder or digital folder—just start gathering those neuropsych reports, IEPs, medical history, and benefits paperwork in one place. Future you will thank you.
A Word About Housing and Community
Maedi’s nonprofit, ILO, creates supportive independent living communities for adults with disabilities. Ellie, her daughter, lives in one of them. These communities are grounded in safety, dignity, and belonging.
That’s the dream, right?
And it’s possible. But it takes some work—and that work starts earlier than you might think.
So whether your child is 8, 18, or 28, it’s never too soon—or too late—to begin putting the puzzle pieces together.
If this feels like a lot (because it IS), you don’t have to go it alone. If you’re a parent feeling overwhelmed, let’s talk. I offer 1:1 coaching sessions to help families like yours get clear, calm, and in control—even when the future feels uncertain. And if you’re an employer who wants to support the working parents in your company raising kids with disabilities, I can help with that, too.
You’ve got enough on your plate. Let’s lighten the load.
xo
Gabriele
Do you have questions about your child’s development or your parenting? Scheduled a free 15-minute call with me here ⬇️