Two Passports, One Diagnosis, and a 30-Year Horizon

I have two passports, a disabled daughter, and no hard assets in the country I'm leaving.

That's the math I'm working with.

My daughter, Alexia, is 8 years old and non-verbal. She has Coffin-Siris syndrome, a rare genetic condition caused by a new mutation on the SMARCA4 gene. There are only about 250 documented cases like hers worldwide. She was also diagnosed with autism, which came along with everything else.

When she was born, the doctors gave her a few months. It was not a diagnosis. It was the system telling us early where she ranked.

My son is 2. He's the easy one, and we try not to let him notice the difference.

I'm 42. Three years ago, I had palpitations, got an echo, and learned I had a severely calcified bicuspid aortic valve, moderate-to-severe regurgitation, and a left atrium that was already failing under the load. I was 39 and athletic. The Ontario system's plan was to wait-list me. My plan was different. I emailed the surgeon who runs the most recognized heart center in the country, with the imaging attached. I got fast-tracked, had the Ross procedure done, and she did beautiful work. The annual follow-up that’s supposed to make sure that work is intact was booked for February. I had to push it to July because I was traveling. The next available slot? July. Not February-plus-a-week. Not April. July. That's the system on a good day, when the patient is the one rescheduling. I'm in Toronto. I've been here 9 years. Top tax bracket. I still don't have a family doctor.

That sentence is what this newsletter is about.

Most parenting content is written for the year you got the diagnosis. The therapy decisions. The IEP (Individual Education Plan) fights. The early intervention scramble. There's no shortage of it. Some of it is good.

This isn't that.

Alexia is 8 at the time I'm writing this. I don't know if she'll outlive me. The doctors said she wouldn't see her first birthday, and she proved them wrong, so I plan for the version where they keep being wrong.

That's the only version where the planning protects her. The frame most parents are handed, what to do this week, collapses against that horizon. A 5-year plan when your kid will need one for 70. A 529 (US college savings account) when she may never independently manage money. A standard will when she needs a trust that survives me, my wife, her brother, and three generations of family who didn't sign up to be her backstop.

The conventional advice isn't wrong because the people giving it are wrong. It's wrong because it was built for a different problem.

The disability planning industry is built around three assumptions: your kid will eventually be independent, your kid is a toddler, or the system will catch them when you're gone. Mine is none of the three.

The third assumption is the most dangerous, because it feels like a plan when it isn't one. You pay into the Canada Pension Plan (CPP) for decades. You pay a lot of tax. The implied deal is that when you can't care for her anymore, something catches her: Ontario Disability Support Program (ODSP) payments, a group home placement, a day program, a case worker. The deal is not real. As of 2023, over 52,000 adults with intellectual and developmental disabilities in Ontario were on a waitlist for support. More than 28,000 of them were waiting for housing. ODSP pays a maximum of $1,408 a month. Adequate 1:1 in-home care, when I price it in Toronto today, runs $60,000 to $120,000 CAD a year. Waitlist figures from the Financial Accountability Office of Ontario, linked at the end.

The math doesn't close. It has never closed. The parents about to find that out are the ones still writing cheques to the system on the assumption that the system is writing cheques back.

That's not pessimism. It's the chart. Alexia is non-verbal at 8. She may pick up new skills for the rest of her life. We work on it. None of them will make her independent. She will never live alone. She will never manage her own money. She will never sign her own legal documents. None of that changes what we do for her day to day. It changes what "planning for her future" means.

The parents I'm writing for already know this. We're not the ones in denial. The denial is built into the products. The 529 accounts, the standard wills, the financial advisors who ask, "what does she want to study?" The IEP process ends at 21 and leaves you with a young adult and no plan. All of these are designed for kids who will eventually take over their own lives. Most of us have known for years that ours won't. The industry hasn't caught up.

The shelf goes empty fast for parents like us.

We're rebuilding. From zero, in public, with receipts.

The questions I'm working through, and writing about here:

How do you build a special needs trust (SNT) when the assets sit in one country and the beneficiary sits in another? What does the math actually say about the tax-advantaged disability accounts, ABLE in the US, the Registered Disability Savings Plan (RDSP) in Canada, against a third-party trust, against funding the whole thing with life insurance? When does the Canadian departure tax (Section 128 of the Income Tax Act) hit, and how do you time the move so it hits softest?

What does Mérida cost when you actually price in-home caregiving? What does Panama City offer that Florida doesn't, once you factor what Florida insurance has done to itself? Where does a 12-year-old with a rare genetic disorder get the kind of stable adult community she'll need at 22, 32, 52?

What does it cost to build a remote income that survives me? What kind of business is robust to my absence? Not in 30 years. In 2 years, if my heart decides differently than the data.

Every one of these is a real decision I'm making in the next 18 months. I'd rather think them through where other parents can read along than make them in a vacuum.

A few things this newsletter will not do.

It won't tell you you're a warrior. You already know how heavy it is. You don't need me to confirm.

It won't sell you a course. There's no upsell. There's no paid tier. I'm building a stroller business in parallel, and someday I'll mention it. Today isn't that day.

It won't make you feel hopeful by lying to you. I'm not interested in inspiration porn. The hope on offer here comes from the math working. When you actually price the trust. When the geographic move actually pencils out. When the will gets signed. Not from a Tuesday morning email telling you everything happens for a reason.

It won't be neutral. I have opinions. About systems that fail us, about advice that gets handed down from people whose kids will manage their own affairs at 22, about the price of waiting. You'll know where I stand.

It won't be everything to everyone. The reader I'm writing for is a parent of a kid with a complex, lifelong disability who already does math, already thinks past next month, already suspects the system isn't going to save them. Autism, rare disease, severe co-occurring conditions, anything where the standard playbook doesn't fit. If that's not you, that's fine. There are better newsletters.

What you get, if you stay:

Plans. Real ones. With numbers, sources, jurisdictions, and the cost of being wrong.

A 30-year horizon applied to the decisions you're making this week: money, geography, healthcare, work, marriage terms, the legal scaffolding that has to outlive you.

Honest reports from someone in the middle of doing it. Not retrospectives from someone who already did. The latter is cleaner. The former is more useful.

And, eventually, a network of other parents thinking the same way. Because the lonely part of this isn't the diagnosis. It's discovering that nobody around you is planning past the next IEP meeting, and you're the only one in your circle running the 50-year math.

I have two passports. One disabled daughter. A 30-year horizon I have to plan around. And a country I'm leaving because it can't deliver what I'm paying for.

That's what's on the table. That's what we're going to figure out.

Welcome to After Me.

Antoine

A few links, as promised.

Ontario developmental services waitlist figures (52,000+ total, 28,128 waiting for supportive living, system serving fewer people than in 2017-18): Financial Accountability Office of Ontario, Ministry of Children, Community and Social Services Spending Plan Review, June 2024.

ODSP maximum monthly payment ($1,408 for a single adult): Government of Ontario, Ontario Disability Support Program.

Toronto in-home care pricing: Trinity Homecare 2025 rate breakdown.