A letter of intent is not a legal document. No court enforces it, no attorney needs to review it, and you can rewrite it in an afternoon if something changes. That informality is exactly why parents put it off. The special needs trust gets drafted because a lawyer is sitting across the table asking for it. The letter of intent gets drafted because you decided, on your own initiative, to sit down and write out how your child lives.

I ask families in my practice to think of it differently: it's the document a stranger would need to take over your job tomorrow. Not the legal job of guardian or trustee. The daily job. The one where you know your son needs his socks put on seam-side out or he'll be picking at them by nine a.m., or that your daughter can self-administer her insulin but needs someone standing nearby who won't say anything unless she asks.

Here's what belongs in it.

Daily Routine, Hour by Hour

Start with a typical weekday from wake-up to bedtime. Wake time, morning routine order, what triggers a meltdown versus what prevents one, meal preferences and textures that get rejected, nap or rest needs, evening wind-down. Include the routines that look unnecessary to an outsider but that you've learned matter. If bath time has to happen before dinner or the whole evening falls apart, write that down. A new caregiver reading this letter for the first time should be able to get through one full day without guessing.

Medical History and Current Care

List diagnoses, medications with dosages and timing, known drug reactions, current specialists and their contact information, and the hospital or ER your child has been treated at before. Note anything a new provider would ask in an intake appointment that isn't in the medical chart: how your child communicates pain, what a seizure looks like for them specifically, which sensory input calms them during a medical procedure. Include insurance information and where the physical and digital copies of medical records live.

Communication Style

If your child is nonverbal or uses an AAC device, explain how they communicate day to day: the device brand and where the backup charger lives, the signs or gestures a stranger wouldn't recognize, how they indicate pain, hunger, or distress without words. If your child speaks but processes language slowly, note how much wait time they need before repeating a question, a detail that prevents a well-meaning new caregiver from assuming silence means "no opinion."

Social and Emotional Profile

Who calms your child down, and what specifically that person does. Which environments cause sensory overload, and what the early warning signs look like before a meltdown starts. What your child finds funny. What they're proud of. None of this is sentimental filler: a caregiver who knows your child likes to be the one who presses the elevator button, or that they need fifteen minutes of quiet after school before anyone talks to them, can prevent problems that a care plan alone won't catch.

Education and Employment

Current school placement, IEP or 504 plan details, the case manager's name, and what has worked or failed in past placements. If your child has aged out of school services, include job coaching history, workplace accommodations that have worked, and any vocational goals you've discussed together. Note who holds copies of the IEP and where to find the supported decision-making or guardianship paperwork that governs who makes these calls going forward.

Legal and Financial Structure

Name the special needs trust, the trustee, and where trust documents are stored. Note whether guardianship, conservatorship, or a supported decision-making agreement is in place, and who holds power of attorney. List benefit programs your child currently receives, SSI, Medicaid waivers, housing assistance, and the caseworker contact for each. This section works alongside the trust itself, not in place of it. The trust controls the money. The letter tells the trustee how you'd want it spent.

People Who Matter

Names and contact information for extended family, close friends, respite providers, and anyone else who should stay in your child's life. Note relationships that should be protected and, if relevant, relationships that need boundaries. Include birthdays and anniversaries your child cares about marking.

Your Wishes for the Future

Where you'd want your child to live if you couldn't be there tomorrow, and where you'd want them to live in twenty years. What kind of independence you hope they'll have, and what support you think they'll always need. None of it is a binding directive, it's context that helps whoever steps in make decisions the way you would have.

Keep It Alive

A letter of intent written once and filed away goes stale within a year. Diagnoses shift, medications change, a beloved aide moves away. Set a yearly date, a birthday works well, to open the document and update it. Store a copy with your trustee, a copy with a trusted family member, and a digital copy somewhere accessible in an emergency. The goal isn't a perfect document. It's one that's current enough to be useful the day someone needs it.