The One Rule That Changes Everything
Means-tested benefits like SSI and (non-waiver) Medicaid have strict asset limits — historically just $2,000 in the individual's name. Money saved directly in your child's name (custodial accounts, savings bonds, direct inheritances) can disqualify them at 18. The tools below exist to save for your child without saving in their name.
Tool 1 — ABLE Accounts (NY ABLE)
Tax-advantaged savings accounts for people whose disability began before age 26 (expanding to 46 in 2026 under federal law). Funds grow tax-free and can pay for broad "qualified disability expenses" — housing, education, transportation, technology, therapies.
- Balances up to $100,000 don't affect SSI at all
- Anyone can contribute (family, friends, the beneficiary)
- Open online through NY ABLE at mynyable.org
Tool 2 — Special Needs Trusts (SNTs)
A trust that holds assets for your child's benefit without counting against benefit limits. Two main flavors: third-party SNTs (funded by parents/grandparents — the standard estate-planning tool) and first-party SNTs (holding the child's own money, e.g., from a settlement). Set up by an attorney experienced in special needs planning.
Tool 3 — Waiver Medicaid
Children on the OPWDD HCBS Waiver receive Medicaid regardless of parental income — covering services, therapies, and acting as secondary insurance. This is often worth more than any savings account. See our OPWDD Tool Kit.
SSI Basics
- Before 18: parental income counts ("deeming"), so many families don't qualify
- At 18: only the young adult's own finances count — reapply promptly at 18
- SSI usually brings Medicaid with it and is the gateway to many adult supports
Also Worth Knowing
- Taxes: medical-expense deductions, dependent care credits, and claiming an adult disabled child as a dependent are all worth a conversation with a tax professional who knows disability rules
- Life insurance: many parents fund the special needs trust with a survivorship policy
- Letter of intent: not legally binding, but a written guide to your child's needs, routines, and people — invaluable to future caregivers
Your Financial Starter Checklist
- Open a NY ABLE account (online, ~30 minutes)
- Consult a special-needs planning attorney about a third-party SNT and your wills
- Audit whose name savings are currently in — fix anything in the child's name
- Brief the grandparents and relatives on the trust/ABLE routing
- Keep waiver Medicaid active; calendar the SSI application for the 18th birthday
Related Reading
This page is educational information, not medical, legal, or financial advice. Every autistic person is different — consult qualified professionals for guidance specific to your family.