Special Needs Trusts require more precision, more care, and more stewardship than any other piece of an estate plan.

By Jerry R. Sneed

When I was in ninth grade, my family adopted my little brother, Eric.

He came from a special-needs program in Connecticut. My mother oversaw programs across the state for women and children. As she puts it, “I met Eric and had to take him home.” When we met him, he couldn’t walk. He was shy and fragile, but his smile was contagious.

Over the years, we taught him to walk again. Proudly, we taught him sarcasm. He’s witty now, the kind of guy who’ll tease you about your haircut or question your relationship choices. But beneath that, Eric can’t take care of himself. His medical needs are lifelong and complex.

When I sat down to write an article about estate planning, I hit a wall. I was fine until I started thinking about my brother, about what happens to Eric when my parents are gone, when I’m gone. That’s when it hits you: how do you protect someone from everything?

When you love someone with special needs, every financial decision feels heavier. You can’t get it wrong. There’s no do-over. The returns can’t be “good enough.” The trustee can’t be “pretty responsible.” The cash flow can’t be “close enough.”

You get one shot to protect someone who can’t protect themselves.

The Brother in Me

My introduction to special-needs care started long before Eric. As a kid, I attended an integrated early-childhood program—a public, lottery-based school where typically developing students were paired with special-needs classmates to help one another grow. It taught me empathy before I even knew the word fiduciary.

My parents are aging. My siblings and I are building our own families. At some point, it’ll just be me. The power of attorney, the fiduciary, the brother. That’s when planning stops being intellectual and becomes emotional.

This isn’t like setting up a dynasty trust for tax optimization or a charitable remainder trust for legacy impact. This is about continuity of care, dignity, and defense. The truth is harsh: people with disabilities can’t defend themselves from bureaucracy, bad actors, or bad returns. And when they lose their caregiver, that emotional aftershock alone can destabilize everything.

We talk a lot about caring for aging parents. That season ends. Caring for a special-needs adult doesn’t. It’s lifelong, a way of life. Taking on that responsibility isn’t just hard; it’s all-encompassing.

All I want is for Eric to be happy and never have a hard day. He loves the Cooking Channel (even though he’s not allowed to cook). He plays Wheel of Fortune on his iPad, asks me the same questions every time I walk into the kitchen, and lights up for BBQs and family parties.

It’s a simple life, but it depends on others. He can’t work. He needs reminders to shower, take medication, and change his clothes. His health has to be monitored constantly. I know my family will always do what’s best for him—but if we’re all gone? I worry.

That’s the thing about planning for someone like Eric. You can model investment returns all day long, but you can’t model love. And that’s what these trusts are really about.

What I’ve Learned as an Advisor

For most of my career, I didn’t seek out families with special-needs planning needs—maybe because I never labeled my brother as “special needs.” He was just my brother, no more of a pain in the ass than any of the other siblings. But writing this forced me to realize this is where I can help families the most: where the technical meets the personal.

Here’s what I’ve learned:

1. Pick qualified trustees, not convenient ones.

Most families choose trustees based on proximity or guilt. Don’t. Every special-needs individual is unique—what makes them happy, what calms them, what triggers anxiety. Choose someone who truly understands those details and has the endurance to stay engaged.

2. Pay them. Really pay them.

I’ve served as trustee for clients’ children and never charged a dime because it felt like an honor—like being chosen as a godparent. But this is different. Managing a special needs trust is relentless. The beneficiary’s quality of life depends on that diligence. Compensate fairly, even if it’s family.

Money enforces accountability. It keeps the work from fading as life gets busy or burdens grow. I’d rather see a trustee feel paid to care than volunteer and burn out.

3. If possible, overfund the trust.

Whatever your projections say, round it up. If a traditional trust runs short, the beneficiary can pivot, get a job, or cut back. A special-needs beneficiary can’t. When that money runs out, the fallback is Medicaid or another family member bearing the burden. Overfund it. Hedge for longevity, inflation, and care surprises. There is both art and science to how you word the trust for the benefit of the family, and a well-skilled attorney will make all the difference. Life insurance can help bridge any funding gap.

4. Hire an investor, not a placeholder.

The trust’s future and the long-term care of the beneficiary depend on the skill of the person putting capital at risk in pursuit of returns. Choose an advisor who treats investing as a craft, not a task; someone engaged, curious, and disciplined.

This isn’t about planning first. It’s about execution that delivers. You need an investor who can underwrite risk, navigate cycles, and compound value.

In this space, competence is stewardship. No investor is right all the time, but you want the one who understands why, who studies, questions, and adjusts. The right advisor is a student of the markets, not just a participant.

5. Know the rules cold.

A poorly timed distribution can disqualify benefits. A joint account can trigger a full review. A trustee who doesn’t understand SSI, Medicaid, or ABLE account coordination can undo years of planning in a single transaction.

You need a team that understands the interplay between state and federal law: the attorney, the CPA, the advisor, and the guardian. Everyone must be fluent in the regulations.

I Know It’s Hard

Great planning starts with empathy, not paperwork. If you’re responsible for someone like Eric, ask yourself:

• Who will advocate for them when I’m gone?

• Who will fight for their care, not just file their taxes?

• Who will love them enough to protect their joy?

The answers aren’t in Monte Carlo simulations. They’re in kitchen-table conversations, and the courage to face the hardest questions now, not later. It’s not about being perfect. It’s about being relentlessly thoughtful.