The Letter of Intent: Your Child in Your Own Words

Your will says who gets what. Your trust says how the money is managed. Your guardianship papers say who decides. But none of them say that your daughter won’t fall asleep without her blue blanket, or that your son lights up around trains and shuts down in loud rooms. All of that lives in your head - and the letter of intent is how you get it onto paper.

What It Is

A letter of intent is a personal, non-legal document in which you write down everything you know about your child: their routines, needs, history, personality, and your hopes for them. It’s the bridge between the legal plan and a real, loving daily life. When someone new steps in - a trustee deciding what to pay for, a sibling or caregiver stepping into your role - the letter lets them step into your child’s life rather than reconstruct it from scratch.

Why It Matters More Than It Seems

It isn’t legally binding, but it is deeply influential. Courts, trustees, and caregivers look to it for guidance about your child’s best interests and your wishes. A funded trust with no letter of intent is a bank account with no instructions; the letter is what tells everyone how to actually use that security to give your child a good life - your child’s good life, defined the way you would define it.

(A funded trust with no letter of intent is a bank account with no instructions.)

What to Include

Don’t worry about polish; worry about completeness. These sections cover most of what matters:

•       Who your child is - personality, what they love, what makes them themselves.

•       Daily routines and preferences - schedule, foods, comforts, and what to avoid.

•       Communication - how they express themselves and how to understand them.

•       Medical - diagnoses, medications, allergies, providers, therapies, and history.

•       Behavior -triggers, early warning signs, and what calms and reassures them.

•       Education, work, and day programs - both current and hoped-for.

•       Relationships and community - family, friends, faith, the people who matter.

•       Benefits and finances - what they receive, the trust, and who to contact.

•       Living arrangements - where they live now and your hopes for the future.

•       Your vision - what a good life looks like for your child, in your own words.

•       Key people - the circle of support and the professionals involved.

How to Write It Without Being Overwhelmed

Start today, even if it’s just one page - an incomplete letter is far better than a perfect one that never gets written. Write the way you talk. Keep the original somewhere findable, and give copies to the people who would actually use it: your successor caregiver, your trustee, key family members. Then revisit it at least once a year and after any big change, because your child and their life keep growing.

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The Short Version

•       The letter of intent captures everything about your child that legal documents can’t.

•       It isn’t legally binding, but trustees, courts, and caregivers rely on it.

•       Cover routines, medical, communication, behavior, relationships, and your hopes.

•       Start now — one page beats a perfect letter that’s never written.

•       Store it where it can be found, share copies, and update it every year.

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(This article is general educational information, not legal advice. Waiver names, eligibility rules, and wait times vary widely by state and change over time. Please confirm current details directly with your state’s agency.)

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