How to Write a Letter of Intent

Lifetime care planning · Preserve

How to Write a Letter of Intent for Your Child With Special Needs

A trust can tell someone how to manage money. It can't tell them what makes your child feel safe. Here's how to write down what only you know, one page at a time.

By Reggie Peral, ClearView Family WealthAbout an 8-minute readCompanion to Episode 6 of Planning for Their Future

The short answer

A letter of intent, sometimes called a life manual or care guide, is a written guide to your child's daily life, needs, and preferences, written so someone who has never met them could care for them well. It isn't a legal document and doesn't replace a will or trust. Start with one section, like the morning routine, spend about twenty minutes on it, and add another section each week.

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Say everything in your plan works exactly as intended. The trust is funded. The right people are named, and they've agreed to their roles. Then something happens to you, and a caregiver who has never met your child has to step in on a Tuesday afternoon.

What do they actually know? They might have the trust, the will, and a folder of medical records. None of those tell them what makes your child feel safe. What a bad day looks like, compared to a good one. Which foods they'll actually eat. How they show that something is wrong when they can't say it. Who they trust, and who makes them anxious.

Right now, in most families, that knowledge exists in exactly one place. A parent's head.

This is the fifth of the Six P's of Lifetime Care Planning: Preserve. Once you've named the people who will show up, the next question is what they'll need to know.

What a letter of intent is, and isn't

A letter of intent is a written record of who your child actually is, built so someone new can understand them the way you do. It's not a legal document. It doesn't need an attorney, and it doesn't replace your will, your trust, or any of the legal planning you've done.

But it may matter more than anything that does. When this piece is missing, a new caregiver doing their best, following the documents they have, still ends up making small decisions that don't match what your child would have wanted. Not through negligence, but through a gap in what they had access to. The financial plan works exactly as designed, and the daily experience of your child's life still suffers.

We aren't just preserving money. We're preserving the person.

What to include

You don't need all of these on day one. These are the sections that matter most, roughly in the order families find most urgent:

Daily routineMorning, afternoon, evening, and overnight, step by step, exactly as you do it.

CommunicationWhat their words, sounds, gestures, and behaviors mean, and the best response to each.

Calming and triggersWhat calms them, early warning signs, what makes things worse, and what to do step by step.

Health, in plain wordsWhat's worked, what hasn't, which providers they trust, and what medical staff need to know.

Food, personal care, and safetyFavorite and refused foods, how meals are served, bathing and grooming, and safety risks.

Their peopleWho they trust, the friendships that matter, and who keeps each connection going.

A good day and a hard dayWhat a good day includes and what usually starts a hard one, so a caregiver can steer toward the good.

Their storyWhere they've lived, what shaped them, what they've struggled with and grown through.

Hopes and valuesWhat you want them to always have, and the values that should guide every decision about them.

Also include a document locator: where the will, trust, powers of attorney, benefit letters, insurance policies, and medical records are kept, and who else knows. Never write passwords in the letter itself. Note where a password manager or password list is kept instead.

The level of detail that actually helps

A note that says "likes routine" doesn't help a new caregiver. This does:

• What time do they wake up, and what does the first hour need to look like?
• What order do they prefer for getting ready, and what happens if it's disrupted?
• What's the small, early signal that frustration is building, before it becomes something bigger?
• How should their plate be arranged, and which textures will they refuse?
• Which doctor explains things in a way they understand, and why does that matter?

The details that seem too small to mention are often the ones that matter most. A useful test: could someone who loves your child, but doesn't live with them, handle a full week of care using only what you've written? If not, keep writing.

How to write it without getting overwhelmed

Start with one section

Pick the one that feels most urgent, often the morning routine, and write everything you know about it in about twenty minutes. Don't worry about polish. Worry about getting it out of your head.

Add one section a week

This isn't an afternoon project. You build it over time, the same way the knowledge itself was built over years.

Talk it through if writing feels hard

Record yourself describing a section out loud, then write it up later. The format matters far less than getting the knowledge somewhere someone else can use it.

Include your loved one

Wherever possible, ask them directly, in whatever way they communicate best. Their own description of a good day may be very different from yours, and both are worth having.

If there are two parents, write separately first

Then compare notes. You may be surprised by what each of you knows that the other doesn't, and by what each assumed the other had covered.

Where to keep it, and who should have it

Keep the original somewhere safe and easy to find, and make sure at least two people know where it is. Give copies to the people most likely to step in: your successor trustee, the person named to make health care decisions, and your emergency backup. Many families also share relevant sections with residential staff or day programs.

And keep it current. A letter written years ago that describes who your child used to be can mislead as much as it helps. Review it at least once a year, and whenever something meaningful changes.

What this looks like for a real family

Consider the Johnsons, a composite family based on situations I see often. Sarah knew that her daughter Mia needs her plate arranged a certain way, that a specific sequence of steps gets her through a hard transition, and which friend from her weekend program she lights up around. None of it was on paper.

When they talked through what belonged in Mia's letter of intent, Sarah realized how much of it she had never said out loud to anyone. Including her husband, Mark.

She started with a single page, the morning routine, written exactly as she does it. It took twenty minutes. It was the first time any of that knowledge existed outside her own head.

Where to start this week

1. Write the morning routine, step by step, exactly as you do it. Give yourself twenty minutes.
2. Write down three signals your child uses to show something is wrong, and the best response to each.
3. List the people they trust and the friendships worth protecting, with who keeps each one going today.
4. Ask your loved one what makes a good day, in whatever way they communicate best, and write their answer as close to their words as you can.
5. Tell two people where the letter of intent is kept.

Frequently asked questions

What is a letter of intent for a child with special needs?

It's a written guide to your child's daily life, needs, communication, health, and preferences, written so a future caregiver who has never met them could care for them well.

Is a letter of intent legally binding?

No. It isn't a legal document and doesn't replace a will, trust, guardianship, or power of attorney. Its value is practical: it passes on what only you know.

What should a letter of intent include?

Daily routines, communication, calming strategies and triggers, health information in plain words, food and personal care, safety concerns, the people who matter to them, what makes a good or hard day, their life story, and your hopes and values for their future.

How long does it take to write one?

It's best written over time, one section at a time. A first section, like the morning routine, takes about twenty minutes. Most families add to it for years.

Who should have a copy?

The people most likely to step in: your successor trustee, health care decision-maker, and emergency backup. Make sure at least two people know where the original is kept, and update it at least once a year.

Write it down, one page at a time

The free Lifetime Care Plan workbook includes a complete letter of intent section with fillable pages for routines, communication, health, safety, who your loved one is, a document locator, and a letter to future caregivers.

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This article is for educational purposes only and is not legal, tax, or investment advice. A letter of intent is not a legal document and does not replace a will, trust, or other legal planning. The Johnson family is a composite created for illustration.