A Letter of Intent: The Most Important Document You Haven’t Written Yet

A Letter of Intent: The Most Important Document You Haven’t Written Yet

September 28th, 2026

By Felicia Williams Brown, Community Engagement Specialist and Educator

“What will happen to my child when I’m gone?” Almost every caregiver asks this question—often silently. There’s a document that begins to answer it: a Letter of Intent.

You know your child better than anyone on earth. You know what calms them when the world gets too loud, what makes them laugh, what they need to feel safe at night, and who they trust. That knowledge, built over years, sometimes decades, lives inside you. And one of the most loving things you can do is find a way to make sure it doesn’t leave when you do.

If you’ve never heard of one, you’re not alone. Letters of Intent don’t get talked about nearly as often as wills, special needs trusts, or guardianship, even though many caregivers, attorneys, and disability advocates say they’re just as important. This blog will walk you through what a Letter of Intent is, why it matters, and how you can start thinking about yours.

That’s exactly the purpose of a Letter of Intent.

What exactly is a Letter of Intent?

A Letter of Intent, sometimes called a Letter of Instruction or a Memorandum of Intent, is a personal document written by caregivers that describes who their loved one is: how they live, what they need, and what they love. It’s addressed to the people who will support your child in the future: future guardians, group home staff, medical providers, trustees, siblings, and anyone else who steps into a caregiving role.

A Letter of Intent is written in your words. Not a lawyer’s words. Not a doctor’s words. Yours, because no one else holds the knowledge you do.

Unlike a will or a special needs trust, a Letter of Intent is not a legal document. It won’t transfer assets or establish guardianship. But what it does, which no legal document can, is capture the full human picture of your loved one’s life. Courts, guardians, and care providers have called Letters of Intent among the most valuable documents a family can prepare.

What does it cover?

There’s no single required format, but most Letters of Intent touch on these areas:

• Daily routines and preferences: Morning routines, food preferences, sensory needs, comforting rituals, bedtime habits.
• Medical and health information: Diagnoses, medications, providers, allergies, behavioral health history.
• Relationships and social life: Important people, friendships, family connections, community ties, beloved pets.
• Living preferences: Housing preferences, roommate considerations, community access needs.
• Financial snapshot: Benefits received, accounts, financial needs, day-to-day spending habits.
• Personal history and story: Background, milestones, achievements, what makes your loved one who they are.

Some families write five pages; others write 35 pages. The goal isn’t length, it’s that a stranger could read it and truly understand your child.

Is the Letter of Intent the same as a will or special needs trust?

No, and understanding the difference is important. Here’s a simple way to think about it:

• Will, Special Needs Trust, Guardianship
• Legally binding and enforceable
• Requires an attorney to prepare
• Establishes who manages finances
• Sets legal guardianship authority
• Deals with assets and benefits
• Personal guidance document
• Not legally binding but deeply respected
• Written by you, in your own words
• Describes your child’s daily life and needs
• Guides caregivers and relationships
• Captures what legal documents cannot

You need both. They work together to protect your child’s future.

Why does it matter so much?

Think about everything you carry in your head right now. The specific brand of shampoo that doesn’t bother your child’s skin. The fact that they need someone to knock twice before opening their door. The name of the support worker they trust most. The song that can turn a meltdown around in ninety seconds. Now imagine someone trying to care for your child without any of that information.

Here’s why caregivers and advocates consider it so essential:

• It protects your child’s quality of life: Future caregivers have the roadmap they need to provide continuity, comfort, and dignity — from day one.
• It reduces guesswork in a crisis: If something happens suddenly, the people stepping in aren’t starting from zero, they have your guidance in hand.
• It preserves your child’s identity: The routines, people, and joys that define your child’s life are not lost with you. They’re documented, honored, and passed on.
• It empowers the people who come next: Group home staff, siblings, and guardians feel confident and prepared, not overwhelmed and guessing.
• It gives YOU peace of mind right now: Many caregivers say completing a Letter of Intent brought them a sense of relief they hadn’t expected. It’s an act of love—and finishing it feels like one.

A Letter of Intent doesn’t take away the grief of being gone. But it takes away some of the fear — because your knowledge lives on.

When should you start?

Honestly? Now. There’s no wrong age to start a Letter of Intent for you or your child. Families with young autistic children benefit from starting early, because the document grows with the child. Families with adult autistic children often wish they’d started sooner.

It is especially important now for older caregivers. If you are a parent or caregiver in your 50s, 60s, or beyond, or if your autistic loved one is an adult, please don’t put this off. Circumstances can change quickly. The time to write this is while you have the energy and the clarity to do it well.

A Letter of Intent is a living document and not a one-time task. Plan to review and update it at least once a year, and any time there’s a significant change in your loved one’s life: a new medication, a new living situation, a new support team. Many families set a “Future Planning Day” on the calendar each year to revisit it together.

A note on involving your loved one

Whenever possible, the autistic person this Letter of Intent is about should have a voice in it. The disability community has a phrase for this: “Nothing about us without us.”

Ask your loved one what they want future caregivers to know about them. Use their communication tools, visual supports, or whatever works best for how they express themselves. Include their words directly, even their artwork or photos. The letter should center on who they are, not just what they need. This doesn’t have to be one big, formal conversation. It can be built in small, comfortable moments over time.

Upcoming Online Workshop

Ready to write yours? Join us for a free workshop.

The Autism Society of North Carolina is hosting a free, 45-minute online workshop to walk caregivers through the Letter of Intent step-by-step: how to start, what to write, and where to get support. Templates will be included.

October 28, 2026 | 7 – 8 p.m. Virtual · Free to attend

Use this link to register: us06web.zoom.us/webinar/register/WN_OHCDqFJ4QcCg9Q8Wy-b-Xg.

This blog was written as an introduction to future planning for caregivers of autistic individuals. For templates, individualized support, and local resources, explore the Successor Guardianship Toolkit for more details; or reach out to your local ASNC Autism Resource Specialist for support.

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