What happens when I'm gone? Planning your child's future (and the turning-18 cliff)

"What happens to my child when I'm gone?" is the question that wakes special-needs parents at 3am. You can't answer it all at once, but you can take a few concrete steps that protect your child for life. Here are the big ones.

Never leave money directly to your child

A well-meaning inheritance or life-insurance payout left directly to a child with disabilities can disqualify them from SSI and Medicaid the moment it arrives. The fix is a Special Needs Trust (SNT), which holds assets for your child without counting against benefits. Setup typically runs $2,000–$5,000 with a special-needs-planning attorney; find one here. Tell grandparents too, so gifts and bequests go into the trust.

Open an ABLE account

An ABLE account is tax-free savings your child can hold (up to $100,000) without breaking the $2,000 SSI asset limit. It's the everyday companion to a trust, and you can open one now. Learn how at the ABLE National Resource Center.

The turning-18 cliff (start at 17)

At 18, in the eyes of the law your child becomes an adult, even if they can't manage medical or financial decisions. Two things happen:

• Decision-making. You no longer automatically have authority. Options range from full guardianship/conservatorship (court-controlled, costly) to lighter-touch supported decision-making or power of attorney. Decide which fits, and start early, because guardianship can take months.
• SSI is re-determined under adult rules. Parental income stops being "deemed," so some kids who didn't qualify before now do. Check eligibility around the 18th birthday.

Write a Letter of Intent

Not a legal document, just a plain letter describing your child's routines, preferences, triggers, providers, and what a good life looks like for them. It's the most loving roadmap you can leave for whoever steps in. Keep it in your binder and update it yearly.

Start with one item this month. And ask the community who they used for their trust or guardianship. Local, vetted recommendations beat cold-googling every time.