The Heavy Weight of Planning a Future for Your Disabled Adult Child

by Kimberly Graham

There’s a kind of exhaustion that only parents of children with very high and complex disabilities understand. It’s not just the physical demands, the relentless advocacy, or the sheer emotional weight of loving someone who depends on you completely. It’s the endless, gnawing anxiety about the future, what happens when you’re not there to hold everything together?

For many parents, this worry peaks when their child reaches adulthood. The world seems to expect that every young person will eventually move out, become independent, and build their own life. But what happens when that’s not possible without intensive support? What happens when the government funding isn’t there, the waitlists stretch for years, and the responsibility of securing your child’s future falls squarely on your shoulders?

And if you’re fortunate enough to have some financial means, does that make the decision any easier? Or does it just add another layer of complexity, forcing you to weigh up options that all feel like compromises in different ways?

Two Impossible Choices

Right now, I’m staring at two options, both of which have huge pros and cons.

Option 1: Renovate Our Current Home

This means making our home more accessible for my son, improving access, modifying spaces for his needs, and finishing DIY projects that have been put on hold for years. In many ways, it’s the simplest option: it keeps us in our community, avoids the stress of moving, and improves his quality of life right now.

But it doesn’t solve the long-term problem. He would still be living at home, still reliant on me 24/7. It wouldn’t give him the independence he deserves, and it wouldn’t give me the respite I desperately need. And when I’m no longer able to care for him… then what?

Option 2: Buy a Home for Him

This would mean using savings to purchase a second home, one that could be adapted for his needs and shared with other disabled young adults in a supported living arrangement. In theory, this is the best long-term plan, it would give him independence, provide me with a chance to step back, and ensure he has a secure future.

However, the financial burden is huge. The housing market is brutal, and finding a fully accessible home in the right location is almost impossible. And then there’s the challenge of managing a property, finding the right housemates, and making sure he receives the right care. It’s not just a financial commitment; it’s an emotional and logistical one too.

The Bigger Problem: A System That Fails Families Like Ours

What frustrates me most is that this shouldn’t be a decision I have to make alone. There should already be appropriate housing solutions in place for people like my son. But right now, the government has placed a pause on new referrals for supported living placements. Even the young adults who are on the urgent list, some of whom are living in institutional settings, are struggling to find a place to go.

If the government funded more supported living options, I wouldn’t have to consider buying a house just to ensure my son has somewhere safe to live. If there were enough accessible homes available, I wouldn’t be stuck in this impossible position, trying to balance his future with my own financial and emotional limits.

Why the Right Fit Matters

Even if a government-supported placement was available, I wouldn’t just take the first open spot. Because it’s not just about finding a place, it’s about finding the right place.

Who will be living with him?
Who will be providing his care?
Will he be safe? Will he be happy?

For someone with complex needs, these questions are everything. The wrong environment can be isolating, disempowering, even dangerous. The right environment can mean a life filled with connection, dignity, and opportunity. That’s why I can’t just accept any available option, I need to have a say in the people around him, the caregivers supporting him, the structure of his daily life.

And that’s what makes the decision to buy a home for him feel like the only real way to ensure he gets what he needs. But at what cost?

No Perfect Answer—Just A Lot of Worry

Every pathway comes with risk. If I renovate, I might be kicking the can down the road, leaving my son without a long-term housing plan. If I buy, I might be putting us under financial strain without even knowing if I can make it all work.

And in the middle of all this, I’m exhausted. The mental load of caregiving, planning, and problem-solving never stops. I lie awake at night, running through every scenario, every possible outcome, every detail I might have overlooked.

I know I’m one of the lucky ones. I even have options. So many families don’t. They’re left waiting, powerless, watching years slip by while nothing changes.

But even with financial resources, even with knowledge of the system, even with the determination to make something happen, I still feel completely stuck.

Because the truth is, no amount of planning will ever make this easy. No amount of money will make the system work the way it should. No amount of worrying will guarantee that I’m making the right decision.

But I don’t have the luxury of waiting for the perfect answer. I have to choose. I just wish I didn’t have to do it alone.

What Needs to Change?

If the government truly supported families like ours, we wouldn’t be in this position. We need:

• More funding for supported living – so families don’t have to shoulder the entire financial burden.
• More accessible housing options – so young adults with disabilities aren’t left on endless waitlists.
• More control over care and housing arrangements – so we can ensure our children live in safe, supportive environments.

Until then, families like mine will continue making impossible choices, carrying a weight that never gets lighter.

And honestly? We’re tired.