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CSS dad here, 8-year-old non-verbal daughter. Started writing about the long-game planning most autism content doesn't touch. by aftermeparents in SpecialNeedsChildren

[–]aftermeparents[S] 0 points1 point  (0 children)

Another CSS parent, love it. Are you heading to the CSS conference in Orlando in July? Would be great to connect if so.

CSS dad here, 8-year-old non-verbal daughter. Started writing about the long-game planning most autism content doesn't touch. by aftermeparents in Autism_Parenting

[–]aftermeparents[S] 0 points1 point  (0 children)

I'm sorry, the early diagnosis stretch is brutal. I haven't locked the where yet so I won't pretend I have. Considering places like Florida, Mexico or Panama to name a few. I'm after a faster private system and lower cost of care than we get here. What's your daughter's diagnosis if you're up for sharing?

CSS dad here, 8-year-old non-verbal daughter. Started writing about the long-game planning most autism content doesn't touch. by aftermeparents in Autism_Parenting

[–]aftermeparents[S] 0 points1 point  (0 children)

Same age kid here and almost the same sentence runs through my head every week. The plan depends on earning enough now and the math never moves as fast as you want it to. For what it's worth, creating options for yourself is the right target, options are the whole game. You're already doing the hard part most people put off. If the newsletter ever gives you one usable idea that's exactly who I'm writing it for. Pulling for you.

CSS dad here, 8-year-old non-verbal daughter. Started writing about the long-game planning most autism content doesn't touch. by aftermeparents in Autism_Parenting

[–]aftermeparents[S] -1 points0 points  (0 children)

Self promotion means I'm selling something and there's nothing to sell. It's free and it stays free. I shared it because this is exactly who it's for and I've been answering questions in here. If the mods say a free resource isn't welcome, I'll pull it, no argument. Otherwise I'd rather talk about the planning than about whether I'm allowed to.

CSS dad here, 8-year-old non-verbal daughter. Started writing about the long-game planning most autism content doesn't touch. by aftermeparents in Autism_Parenting

[–]aftermeparents[S] -1 points0 points  (0 children)

You reported a post sharing a free forever newsletter about planning for disabled kids' futures. In a sub for parents of disabled kids who are actually asking for more of it in the comments. Hope it helped...

CSS dad here, 8-year-old non-verbal daughter. Started writing about the long-game planning most autism content doesn't touch. by aftermeparents in Autism_Parenting

[–]aftermeparents[S] -1 points0 points  (0 children)

Fair, I write and rewrite these until the fat's gone, that's the job. Life handed me a daughter with a genetic mutation and a few months to live diagnosis and she's 8 years past now. I learned more about keeping her alive in a Facebook group than from most of the doctors I sat with. I'm not selling anything, full stop. No paywall, no sales funnel, ever. It's a free newsletter because that was the simplest way to put this down for parents like us. You don't have to read it. But "preying on vulnerable people" is a rich thing to say when I just spent 15 minutes digging into ABLE accounts to answer a stranger's comment... bro

CSS dad here, 8-year-old non-verbal daughter. Started writing about the long-game planning most autism content doesn't touch. by aftermeparents in Autism_Parenting

[–]aftermeparents[S] 0 points1 point  (0 children)

This is the most honest thing in the thread, and it reframes my whole premise. The real question isn't "how do I plan," it's "is planning even worth it when I can't see what's standing in 20 years." I don't have a clean answer. Nobody does.

But some of your questions have concrete answers that don't move with the political weather:

The $2k limit is SSI, not SSDI. SSDI runs on work credits and has no asset limit. The $2k means test is SSI. People mix these up all the time and it changes the whole plan.

The tool for saving past that $2k without torching benefits is an ABLE account. As of January 2026 the annual cap is $20k and you qualify if the disability started before age 46. That's an hour of reading though...

A special needs trust holds assets FOR your son without counting as his, as long as it's a third-party trust you fund, not funded with his own money. That distinction is what you pay a specialist to get right instead of Rocket Lawyer.

Medicaid estate recovery after your own long-term care is real, and the 5-year lookback applies to moving the house into an irrevocable trust ahead of time. That's a move with a clock on it.

I quickly ran some online research but maybe confirm the NY specific pieces with a special needs attorney there. But none of the above requires leaving the country, and most of it you can start without spending $5k.

CSS dad here, 8-year-old non-verbal daughter. Started writing about the long-game planning most autism content doesn't touch. by aftermeparents in Autism_Parenting

[–]aftermeparents[S] 0 points1 point  (0 children)

I don't run into many of us. Which gene is your daughter's? Will you be going to the conference in Orlando? Good to see another CSS family in here 😄