My son is 21 years old. He has profound autism. He can’t read. He can’t manage money. And the financial planning advice out there for parents like me is either written by lawyers who’ve never lived it or doesn’t exist at all.
I’ve spent years trying to figure out how to make sure my son is okay — not just now, but after I’m gone. And I’ll be honest with you: I still don’t have it all figured out. But I’ve learned enough to know that the stakes are different for us. The rules are different. The fears are different.
If you’re a parent of a special needs child trying to navigate this, I want to share what I’ve actually done, what I’ve learned, and what still keeps me up at night.
The Thing Nobody Says Out Loud
Here’s what no financial planning article will tell you: even if someone handed my son a million dollars tomorrow, the money itself isn’t the hard part. The hard part is this — how do you protect it?
My son trusts people. He wants to connect with people. He’s lonely in a way that’s hard to describe unless you’ve watched your kid struggle to make a single friend while the world moves on around him. He deals with depression. He deals with anger. And he lives in a world that was not built for him.
That loneliness and that trust make him a target. I don’t say that to be dramatic. I say it because it’s the reality I plan around every single day.
- Women who might fake a relationship — to make him feel loved, to make him happy, and then marry him and access his money legally. That’s not paranoia. It happens.
- Con artists — who could literally walk him through giving his money away. Hand him a phone, tell him to press these buttons, and it’s gone.
- Family members he trusts — people he loves who might hit a rough patch financially and see him as the easy way out. Not because they’re bad people, but because desperation makes people do things they wouldn’t normally do.
- Himself — not out of greed, but because he doesn’t understand consequences the way you and I do. He’d spend it all on things that make him happy in the moment without understanding that the money needs to last a lifetime.
Every piece of financial planning I do comes back to one question: how do I protect my son from a world that will happily take everything from him?
What I’ve Actually Set Up
Let me walk through the pieces I’ve put in place, what they do, and what I wish I’d known sooner.
SSI and Medicaid
My son receives Supplemental Security Income (SSI). When he qualified for SSI, Medicaid came automatically — you don’t apply separately for it. Medicaid covers his healthcare, which for a person with profound autism, is not optional. It’s survival.
Here’s what catches most parents off guard: SSI has strict asset limits. As of 2024, your child can’t have more than $2,000 in countable resources. Two thousand dollars. That’s it. Go over that number and benefits stop.
This means you can’t just leave your kid money in a will. You can’t put money in a regular savings account in their name. Well-meaning grandparents can’t write them a big check. Other people’s financial decisions — even generous ones — can destroy your child’s benefits overnight.
Think about that. A family member tries to help by leaving your child $5,000 in their will. They meant well. But now your kid loses SSI and Medicaid until that money is spent down to under $2,000. The healthcare they depend on — gone, because someone tried to be kind.
This is why the next two pieces exist.
The ABLE Account
An ABLE account (Achieving a Better Life Experience) is a tax-advantaged savings account specifically for people with disabilities. Think of it like a 529 plan, but for disability-related expenses.
The key benefit: money in an ABLE account doesn’t count against the $2,000 SSI resource limit — up to $100,000. That’s a massive deal. It means my son can actually have savings without losing his benefits.
What it can be used for:
- Housing
- Transportation
- Education and job training
- Healthcare and wellness
- Assistive technology
- Basic living expenses
What I wish someone had told me earlier:
- The disability must have occurred before age 26 (this is being expanded under newer legislation — check current rules for your state)
- Annual contribution limits apply (tied to the federal gift tax exclusion — currently around $18,000/year)
- If the account goes over $100,000, SSI payments are suspended (not terminated — they restart when the balance drops back down)
- Every state has different rules. Some states have their own ABLE programs, some participate in other states’ programs. The fees, investment options, and fine print vary. I spent more time than I want to admit comparing state programs.
An ABLE account is good for near-term and medium-term savings. But it’s not the full answer. For that, you need a trust.
The Special Needs Trust
A special needs trust (also called a supplemental needs trust) is a legal trust designed to hold money for a person with disabilities without disqualifying them from government benefits like SSI and Medicaid.
The trustee — not your child — controls the money. They can use it to pay for things that improve your child’s quality of life: a better living situation, a vacation, a computer, clothing, entertainment. Things that SSI and Medicaid don’t cover.
This is the piece that addresses my biggest fear. A properly set up special needs trust means:
- My son can’t be talked into giving the money away — he doesn’t control it
- A future spouse can’t access it through marriage — it’s not a marital asset
- Family members can’t pressure him into “lending” them money — it’s not his to lend
- He can’t accidentally spend it all — disbursements are managed by the trustee
- It doesn’t count against his SSI/Medicaid limits
The terrifying part: choosing a trustee. This is the person who will manage your child’s financial life — potentially for decades after you’re gone. It needs to be someone who is honest, financially competent, who genuinely cares about your child, and who will outlive you long enough to matter. If you don’t have that person, there are professional trustee services, but they charge fees and they don’t love your kid.
I’ll be honest — I still wrestle with this. It’s one of the hardest decisions I’ve ever had to think about.
Guardianship
When your special needs child turns 18, they’re legally an adult. That means you — their parent who has cared for them their entire life — technically have no legal authority to make decisions for them anymore. Not medical decisions, not financial decisions, nothing.
Guardianship is the legal process of maintaining that authority. I went through it, and I’ll share what the process looked like:
- You petition the court — this requires a lawyer in most cases
- There’s a hearing where a judge determines that your child cannot manage their own affairs
- You’re appointed as their legal guardian
- It costs money — court fees, attorney fees, evaluation fees
- It’s emotionally brutal — sitting in a courtroom explaining to a judge why your child can’t take care of themselves is not something any parent is prepared for
But it’s necessary. Without guardianship, you can’t manage their benefits, their medical care, or their finances once they turn 18. And more importantly — going back to my earlier fears — without guardianship, there’s no legal barrier between your child and every person who might take advantage of them.
The Complexity Nobody Warns You About
Here’s what makes all of this so exhausting: every state has different rules.
ABLE account rules vary by state. Trust laws vary by state. Medicaid eligibility and covered services vary by state. Guardianship processes vary by state. If you move, some of what you set up may need to be revisited.
And the rules interact with each other in ways that aren’t intuitive:
- Money in a trust affects benefits differently depending on how the trust is structured
- Who contributes to an ABLE account can affect the tax treatment
- Income from a trust can count as income for SSI purposes, reducing the monthly payment
- If a family member leaves money to your child directly (not to the trust), it can blow up their benefits
I’ve talked to other parents who lost their child’s benefits because a well-meaning relative put $3,000 in a savings account with the child’s name on it. Or because an inheritance wasn’t properly routed to the trust. These are mistakes you can’t easily undo.
If you take one thing from this article: tell every family member, every grandparent, every person who might ever want to leave your child money — it needs to go to the trust or the ABLE account. Not to your child directly. Write it down. Make sure it’s in their wills. This is not optional.
What Money Can’t Fix
I can set up every account, fund every trust, file every form. And none of it answers the question that actually keeps me awake.
Who’s going to be there for my son when I’m not?
Not who’s going to manage his money. Not who’s going to file his paperwork. Who’s going to sit with him when he’s lonely? Who’s going to know that he gets angry when he’s actually scared? Who’s going to make sure he’s happy — not just safe and fed, but actually happy?
Financial planning for a special needs child isn’t really about money. It’s about trying to build a life for someone who can’t build it for themselves, and then trying to make sure that life doesn’t fall apart when you’re no longer around to hold it together.
I don’t have the answer to that yet. I’m still working on it. But I think it starts with being honest about the problem, which is what I’m trying to do here.
Where to Start If You’re New to This
If you’re a parent just starting to think about financial planning for your special needs child, here’s the order I’d suggest:
- Apply for SSI and Medicaid if you haven’t already. If your child qualifies, this is the foundation everything else is built on. Contact your local Social Security office.
- Get guardianship in place before they turn 18. If they’re already over 18, start now. You need a disability attorney. Yes, it costs money. It’s not optional.
- Open an ABLE account. Even if you can only put in $50 a month. Get the account open and start building. Compare your state’s program with other states’ programs — you’re not limited to your own state.
- Set up a special needs trust. This requires an attorney who specializes in special needs or disability law. Not a general estate attorney — someone who knows the specific rules around benefits preservation. This is not a place to cut corners.
- Tell your family. Every person who might ever leave money to your child needs to know about the trust. Put it in writing. Include it in your own will. Make it impossible to accidentally destroy your child’s benefits through a well-intentioned gift.
- Plan for the person, not just the money. Who will be your child’s advocate? Their companion? Their protector? Start having those conversations now, even if they’re uncomfortable. Especially if they’re uncomfortable.
I’m Still Figuring This Out
I don’t write this as an expert. I write this as a dad who’s been in it for 21 years and is still learning. The financial system wasn’t designed for my son. The world wasn’t designed for my son. Every piece of planning I do is about bending a system that doesn’t care about him into something that might protect him.
If you’re in this with me — another parent, another caregiver, another person lying awake at 2 AM wondering if you’ve done enough — you’re not alone. I’ll be writing more about the specific tools and strategies I’ve used, including deeper dives on ABLE accounts, special needs trusts, and the real costs of guardianship.
And if you’re also rebuilding your credit while doing all of this, I’ve been there too.
We figure it out. That’s what we do.
— Thomas