When You're Gone

Every parent of a child with profound disabilities 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

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.

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.

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 is the gateway to care management, day services, Self-Direction, and residential supports. There is no standard amount: OPWDD sets each person's budget individually from an assessed level of need, and budgets vary widely. Once you have a Care Manager, ask to see your child's authorized budget itemized in full, rather than planning against any published figure, ours included. 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.

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 a disability, 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 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.

Questions about this guide? Write to hello@1000villagers.org · 1000villagers.org