A free guide from 1000 Villagers
When You're Gone
A practical planning guide for parents of adults with profound autism, the steps that protect your child when you can no longer be the one protecting them.
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Every parent of a child with profound autism carries the same question: what happens to my child when I'm gone? You can't answer it in a weekend, but you can take it apart into steps, and each step you finish is one less thing left to chance. This is the checklist we wish someone had handed us.
This guide is educational, not legal or financial advice. Laws and benefits vary by state and change over time. Use this to get organized and to ask better questions, then work with a licensed attorney and a benefits-savvy financial planner in your state. Where we mention specifics, they reflect New York; confirm the equivalents where you live.
The seven essentials
- A Letter of Intent: the story only you can tell.
- Decision-making sorted at 18: guardianship or supported decision-making.
- A Special Needs Trust: so money helps without disqualifying benefits.
- Public benefits locked in: SSI, Medicaid, OPWDD.
- On the housing/residential waitlist: years early.
- A circle of support: never just one person.
- A portable emergency plan: findable in seconds by a stranger.
1. Write a Letter of Intent
It isn't legally binding, and it's still the most important document you'll write. It's where you hand the next caregiver everything that lives only in your head: who your child is, not just what they need.
Include: daily routine hour by hour; how they communicate and how to tell when something's wrong; what soothes and what triggers; foods, textures, and sensory needs; medical history, providers, and medications; faith, joys, fears, and favorite people; your hopes for their adult life. Update it once a year and tell people where to find it.
2. Sort out decision-making at 18
The day your child turns 18, the law treats them as an adult, even if they can't manage money, medical decisions, or contracts. Plan for this before the birthday.
- Guardianship (in NY, often Article 17-A), a court gives you legal authority. Powerful, but it removes rights; courts increasingly look for less-restrictive options first.
- Supported decision-making: a formal agreement where your child keeps their rights and names trusted people to help them decide. A growing alternative for those who can participate.
- At minimum: a health-care proxy, HIPAA release, and power of attorney so you can keep speaking to doctors, schools, and benefits offices.
Whatever you choose, name a successor, who takes the role when you can't. A guardianship with no successor is a gap waiting to open.
3. Protect benefits with a Special Needs Trust
Leaving money directly to a child on SSI/Medicaid can disqualify them the moment it lands. The fix is a Special Needs Trust (SNT), which holds assets for your child without counting against benefits.
- Third-party SNT: funded with your money (or grandparents'); no Medicaid payback. Make this the beneficiary of your will, life insurance, and retirement accounts, never your child directly.
- First-party SNT: for money that's already your child's (an inheritance, a settlement); has a Medicaid payback at the end.
- Pooled trust: a nonprofit-managed option that's cost-effective for smaller amounts.
- ABLE account: a tax-advantaged savings account (up to the annual limit) your child can use for disability expenses without losing benefits. Pairs well with an SNT.
Tell the grandparents. A loving $20,000 bequest left directly to your child can undo years of careful planning. Ask everyone to leave gifts to the trust.
4. Lock in public benefits
- SSI / SSDI: re-apply at 18, when eligibility is judged on your child's own (minimal) income, not yours.
- Medicaid: the gateway to most disability services; protect eligibility with the trust tools above.
- OPWDD eligibility (NY): establish it through the “Front Door” process. This unlocks service coordination, day services, self-direction, and residential funding (roughly $150K/yr per adult in NY). Start the paperwork early; it takes time.
5. Get on the housing waitlist, years early
This is the one most families learn too late: residential placements and waivers can carry multi-year waitlists. Apply long before you need it; you can always decline a placement, but you can't recover lost years in the queue.
- Ask OPWDD/your care manager about certified residential options and self-directed / Individualized Supports (ISS).
- A Care Coordination Organization (CCO) care manager can put your child in the queue and keep the plan current.
This gap, a safe, permanent, known home for an adult child after the parents are gone, is exactly why we started 1000 Villagers: a community where families live together and the community itself becomes the safety net. If that question keeps you up at night, you're who we're building for.
6. Build a circle of support
No plan should rest on one person. Name several, family, friends, and at least one from the next generation, who know your child and one another. Write down who does what (the money person, the medical person, the day-to-day person), and make sure the documents (above) and the Letter of Intent are where they can find them.
7. Make the emergency plan portable
If your adult child is ever lost, hurt, or alone, a stranger needs to help in seconds, without a login or a phone call to you.
- A wallet card / wearable with: name, “I have autism, I may not respond,” how to communicate, what calms, and a number that reaches a guardian.
- A one-page medical summary for the fridge and the go-bag (diagnoses, meds, allergies, providers).
- A scannable emergency profile that shows responders the basics while keeping medical detail private. (Our sister project, VillageCard, does exactly this, free.)
Your 12-month action plan
- This quarter: start the Letter of Intent. Open an ABLE account. Confirm decision-making documents (proxy, HIPAA, POA) are in place or filed.
- Next quarter: meet a special-needs/elder-law attorney; create or update the third-party SNT; align your will, life insurance, and retirement beneficiaries to the trust.
- Then: establish/confirm OPWDD eligibility (the Front Door) and get on residential/self-direction waitlists via a CCO.
- By year's end: name your circle of support, brief the grandparents on “gifts to the trust,” and put the emergency plan in place (wallet card + fridge sheet + scannable profile).
This guide is provided for general educational purposes by 1000 Villagers and is not legal, financial, tax, or medical advice. It does not create an attorney-client relationship. Rules for benefits, trusts, and guardianship vary by state and change; consult a licensed attorney and a qualified financial professional in your jurisdiction before acting. 1000 Villagers is in early development and working with the Doug Flutie Jr. Foundation for Autism on fiscal sponsorship; no tax-deductible donations are being accepted at this time.