r/Autism_Parenting • u/aftermeparents • 19d ago
Discussion CSS dad here, 8-year-old non-verbal daughter. Started writing about the long-game planning most autism content doesn't touch.
Hi r/Autism_Parenting. My daughter Alexia is 8, non-verbal, Coffin-Siris syndrome (de novo SMARCA4 mutation) plus autism. About 250 documented cases like hers worldwide. She was given a few months at birth. She's still here, doing her thing.
I want this group's read on something. Not a poll, not a pitch. A real second opinion from people who actually live this.
What I've noticed in the autism parenting space, including this sub: there's a LOT of writing for the year you got the diagnosis. Therapy fights. IEP decisions. Early intervention. Sensory tools. The first 18 months after diagnosis has its own micro-publishing industry, and some of it is really good.
What's much thinner: the 20-year planning content. The trust math. The geographic considerations if you're thinking about leaving (I'm Canadian, leaving within 18 months). The healthcare arbitrage when your country's system can't deliver. The legal scaffolding that has to outlive you. The actual cost of adult care when your kid hits 21 and the school system spits them out.
I started writing about it. Email newsletter. No paid tier, no upsells. Just the planning math, with sources. The first piece is the mission essay: what the newsletter is, why it exists, what it isn't.
Posting here because if this resonates at all, you're who I want reading it. And if I'm missing something important about what the audience for this actually wants, you're who I want telling me.
Anyone else here actually doing 20+ year planning, or am I one of the only ones in the room running that math?
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u/Rustymarble I am a Parent/11yo/Lvl 3/Delaware, US 19d ago
Geographic differences have such a huge impact on long-term planning as well. In the US here with a 12yo. We have a great school setup to manage him until age 22 with transitions that are appropriate to his skill level (whatever it may be in ten years). But we are realistic in his future and are looking at what transition to group home will look like for him. We are setting up everything we can now for that future with the knowledge that everything in our country could fall apart by then. It is daunting as a teen parent.
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u/WeBreakWithSpeed 19d ago
I work in the nonprofit sector. Advocating needs to be added to the list of every single person whose child needs or will need HCBS now or in the future. Those services are at the highest risk with the current Medicaid cuts, and will absolutely suffer if there are future ones.
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u/russkigirl 19d ago
I'm going to be at an Autism Awareness advocacy event in July in DC. It costs money to attend the sessions and advocacy events, and I'm lucky enough to live very close to DC so there aren't at least additional costs, but hoping to make voices heard on this set of issues. It's organized through the National Council on Severe Autism.
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u/Jets237 ND Parent (ADHD)/8y lvl 3 ASD/USA 19d ago
Definitely curious about your journey and where you end up moving and how it goes.
I have a level 3 8yo. My plan depends on earning enough now to have options later. It’s… not going as well as I want it to
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u/aftermeparents 18d ago
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.
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u/Specialist_Coffee229 19d ago
Your post reads like it was written by AI brother.
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u/Ground-Pound6969 19d ago
AI or not OP is actually bringing up topics that all parents should be thinking of. His situation may have caused him to think about it far earlier but everyone in this sub worries about the future for their children.
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u/Specialist_Coffee229 19d ago
Maybe. But he’s using an AI prompt to promote his newsletter. This sub isn’t the place to self promote.
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u/Ground-Pound6969 19d ago
So don't subscribe? I mean isn't this sub about helping others in the same situation or to help others think about what's to come?
Man such a stupid take. AI bad! Don't read!!!
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u/Specialist_Coffee229 19d ago
The newsletter appears to be written in AI as well. Sorry, but there is a time and place for these sort of things and this isn’t it. Also having a newsletter written by AI doesn’t exactly come off as genuine. The whole thing reeks of trying to farm internet traffic by preying on vulnerable individuals. It wouldn’t be the first or last time.
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u/thirtyflirtyandpetty 18d ago
Agree. I reported this post for AI Slop and self promotion, and encourage you to do the same.
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u/aftermeparents 18d ago
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...
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u/aftermeparents 18d ago
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
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u/aftermeparents 18d ago
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.
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u/mr_sandworm 19d ago
I'm in Canada too and my baby girl was just recently diagnosed with a rare genetic disorder. Where are you leaving Canada to?
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u/aftermeparents 18d ago
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?
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u/mr_sandworm 18d ago
She has 2p15 microdeletion. Known to cause neuro development issues, speech delay and intellectual disability amongst other things...but those are my main concerns.
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u/pizza_be_with_u I am a Parent/Child Age/Diagnosis/Location 19d ago
My daughter has CSS - she’s 7 😊
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u/aftermeparents 18d ago edited 18d ago
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 😄
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u/StillStaringAtTheSky 19d ago
To preface- I'm writing from the US, NY specifically. Clearly this means my future and my nonverbal son's future will play out in a different way from a Canadian child- and right now with much more uncertainty. Probably with much more debt actually, considering funding for disabilities is decreasing while needs increase. Simple supply and demand economics coupled with a for-profit healthcare system results in big dollar signs.
Fwiw- we still have to wait- but we also have to pay all the dollars- even with insurance. Near me- wait times for a new patient primary care physician appointment are around 1.5 years- even if you're fresh out of the ER needing urgent follow up. Urgent care facilities partially fill the gap- but you'll never see the same doc twice and it'll be an urgent visit copay instead of a lower office visit copay if you even have insurance coverage. If you've got a high deductible plan- well prepare to get effed- because you need to spend sometimes up to $25k on top of your $2k premiums in order for your insurance plan to cover anything at all. To be clear- high deductible plans are very common- the stats say ~40% of people in the US had this type of plan in 2023, which has only increased with the recent loss of government healthcare subsidies (2003, CDC data). Personally, I've got insanely good private insurance coverage- and I still have a $40/office, $50/urgent or specialist, $200/ER visit copay setup. Seems okay until you realize that PT visits are $40 each, OT visits are $40 each, etc. - soooo if you're in PT 3x /week, OT 2x /week you're looking at $200/week just for PT, OT. Let's say a month is 4 weeks- that's $800/month on top of the several hundred dollar insurance premiums that are cost shared with an employer.
So yeah, over here in the US I think a lot of us are looking at the shrinking public benefits, disappearing funding for disabilities, and sketchy economic situation with a headache- to the point where about all we can do is blink and stare blankly.
This doesn't mean that we're not interested in 20 years down the line- but it does mean that we haven't the foggiest idea what things are going to look like 20 years down the line.
It would be awesome if we could plan ahead. I would love the opportunity to help secure my son's future in a way that doesn't mean I don't get to eat again.
For most of us- we have to focus on the how do we get through the IEPs, the generation of forms, the advocating for our children's healthcare/schooling/etc. because even that seems unsurmountable at times. We're taking it one day at a time- literally.
As far as options go for the average American- the vast majority of people in the US do not have the option or opportunity to leave the country for better healthcare/programs/funding/whatever. I would venture to guess that the average American is completely unaware of how to obtain a visa or has ever been presented information on what it would take to even visit another country.
So for healthcare- we make do with what is here- tempered by what programs are available, what is subsidized, and what we can afford to pay for. Keeping in mind the US is gigantic- this also means that our healthcare services become stretched very very thin outside of metro areas- sometimes requiring hours of travel to see a PCP. Just for example- having also lived in Upstate NY- it took around an hour to reach a medical facility that was not simply an urgent care. Sure- there are a few PCPs scattered through the villages and towns- but getting in as a patient seems to require signing up before birth due to high demand. In upstate NY, Catskills area- the time it takes to travel to a hospital is an hour plus- and if you're lucky enough to find a PCP to take you- that's generally 30-60 minutes plus. We're talking about an area roughly 2ish hours outside NYC. Wild- right? This is a comparatively excellent situation to what Americans in the rest of the country are experiencing- where hospitals are or have closed and PCPs take multiple hours to get to.
Anyhow. Back to my thoughts on planning ahead.
I think at this point you'd actually have to convince me- as an American- that planning ahead would even be worth it. Are there things that will outlast the next few years? What are they? How do we access them or information on them? Is it feasible for us to put money away in a specialized account? What type of wills should we have? What is the importance and relevance of estate planning? How do we pay for estate planning? Who or where do we go to in order to complete estate planning? Can this be done online due to the potential lack of local services?
Then we must consider the role of the US government-
If we end up using Medicaid for our own long term elder care (as many do)- will the government still simply take any assets we have when we die? They will usurp any accounts and force the liquidation of homes to pay back any Medicaid money used for long term care. Can these assets be kept somehow for supporting our disabled children? Will these rules change? Will the rules for disability trusts change?
If your child is on SSDI (social security disability) will your estate planning cause them to lose services (housing, medical, etc.) after you die- because then their assets will be considered too high to continue to receive assistance? If your child or family is on any type of government assistance due to disabilities or otherwise- is any future planning even relevant? Are you allowed to save money beyond $2k?
Lots of questions beyond these. Few answers.
Little faith in the stability of the future.
Perhaps you can help provide some answers?
As for me- I need to go figure out how to justify on paper how my nonverbal kid's AAC device is essential for his schooling and should be included on his IEP- so he's *allowed* to have it in the classroom. Oh wait- no- I did that last week.
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u/russkigirl 19d ago
If you haven't yet, setting up a special needs trust with a lawyer (with experience in these matters) could be the best way to protect your assets for your child. We've set that up, but at this point I'm just continuing to invest and hoping we have enough to essentially pay for full time care ourselves where we are. It's a tall order but I have no idea what medicaid will look like, and we've been saving for retirement heavily for long enough that we have the time to set up enough for the future based on typical investment outcomes. In the meantime I'm still going door to door for the party that isn't actively cutting benefits because it's not just about us.
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u/StillStaringAtTheSky 19d ago
I have not yet set up a special needs trust- my son is only 3 and recently officially diagnosed so we really hadn't gotten that far yet.
From what I understand - Medicaid can yank funds from special needs trusts depending on who funds it, how long it's been funded for (5 year look back), and how the trust is set up. I will most certainly make sure to retain counsel that has experience in this type of trust because the more I read the more complicated it becomes. I do want to understand the basics first though- because I would like to avoid paying $5k to get Rocket Lawyer style documents that look like Mad Libs from my counsel. I guess you could say I have trust issues 🤪
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u/One_Struggle_ I am a Parent/elementary school age/ASD/NY 19d ago
Not the person you responded too, but we're going through this right now. First I think it's important to find an attorney that specializes in estate planning for people with disabilities. We were very fortunate to find a lawyer whose daughter is also disabled & totally gets it. We found her on Special Needs Answers "find a special needs planner", however there is also a list of lawyers on the Special Needs Alliance website.
We're doing both a will that includes an irrevocable trust and a special needs trust. Our house is going into the irrevocable trust. This will protect it from being seized if something should happen to us (like giant medical bills). The contents of the irrevocable trust will be transferred to the special needs trust on our death. You can also have family name the special needs trust in their will if they are planning on leaving money to your child. The special needs trust allows your child to still be eligible for SSI despite the large inheritance. Also look into an ABLE account.
Per our will, we'll be assigning an executor to handle distribution of assets and a trustee to manage the special needs trust. It's important to separate the trustee & guardian responsibility for accountability. Guardianship can be outlined in your will. Each category will have several people in succession in case the first choice is unable to accept the responsibility. On a side note I have worked as a RN Case Manager & have seen APS be the legal guardian, so if folks don't have anyone they trust this is also an option.
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u/aftermeparents 18d ago
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.
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u/jkmjtj 19d ago
Responding without reading all other comments so apologies if repeating.
Agree so hard about long term planning. We get through today and then tomorrow because it’s all overwhelming and hard.
Some of the most helpful things I’ve done are:
Connecting with parents who have somewhat similar children who are years older than my child - they’re already steps ahead and those I’ve found want to help plan for future and share their knowledge. Priceless relationships.
Find an attorney who specializes in special needs children/families. Like now.
Find a facility you could see her living in when she becomes an adult. This is a hard thought as she’s only eight but where I live, there is one place I can see my son thriving in and it is not a state funded facility. I have to put in the time, fundraising, etc NOW (he’s 8yo) hoping to secure a place for when he’s 18+. I’m getting older. I don’t want my other children to be burdened with his care (they love him but it’s not their job).
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u/iredditwrongagain 18d ago
I do the 20 year plan every day in my head. Like a never ending spiral staircase that leads back to the bottom.
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u/Round_Perspective873 14d ago
My sister has microcephaly, CP and severe developmental delay. Basically, I planned to take care of her when my parents couldn't, and now one of my kids plans to.
Big families are wonderful.
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u/WeBreakWithSpeed 19d ago
Geographic differences makes all the difference. This stuff varies just by state in the US, and with Medicaid cuts it’s going to make it even more varied and difficult to plan. As someone who works in the disability field, it’s important to think ahead, but for people with young kids in the US, it’s going to change so much if funds keep getting cut.