The first time a family asks me about a Letter of Intent, they usually apologize. "I know this probably isn't your job, but …" It is my job. It is, arguably, the most important part of my job.
What a Letter of Intent Is
A Letter of Intent (LOI) is a non-legal, non-binding, written document that captures everything a successor guardian, trustee, or caregiver would need to know to care for a person with special needs. It sits alongside the estate plan, not inside it. It is not witnessed. It is not notarized. It will probably never be read by a judge.
It will, however, be read by the person who takes over your child's life when you are no longer able to. And that person will, on a good day, have a rough outline of your child from holidays and family dinners — and on a bad day, have almost nothing.
What Belongs in the Letter
The Letter of Intent covers territory no legal document does. A complete LOI includes:
- Background: birth history, diagnosis history, educational history, significant life events
- Current medical picture: diagnoses, medications with dosing, allergies, treating physicians and specialists with contact information, hospitals and preferences, dental care, vision, hearing, ongoing therapies
- Daily routine: wake time, morning routine, meals and food preferences/aversions, school or day program, after-school routine, evening routine, bedtime
- Behavioral triggers and regulation strategies: what causes distress, what helps, what does not
- Social life: friends (with family contact info), romantic interests, community activities, religious observance
- Preferences and aversions: favorite foods, activities, media, clothing; things to avoid
- Communication: how your child communicates, what words they use, what they understand
- Spiritual or religious practice if relevant to the child and family
- Goals: what you want for your child's life — housing, work, community, relationships, dignity
- Administrative: benefits currently received, agencies involved, advocate contacts, attorney and trustee contact info
A good LOI for a young adult with moderate support needs runs 15 to 25 pages. It should be revisited every year and substantially revised every three to five years or whenever the child's life changes materially.
Why I Sit With Families and Draft It
I do not hand families a template and ask them to fill it in. I sit down with them for an hour and walk through each section together, asking questions, taking notes. The reason is not that they could not fill out a form — they could — but that the conversation surfaces things they have never written down because they have never had to.
"How does Emma communicate?" "Oh, you know, she just … well, she points, and then if she wants something specific, she uses the word 'more,' and if she wants to leave, she starts tugging on your sleeve, and — actually, I do not think I have ever written this down." That conversation is the hour that makes the difference between a future caregiver having a document and having an actual map.
The Conversation You Have With Your Other Children
There is one more section that matters, and it is usually the hardest to write: the section addressed to the sibling or siblings who will take on a leadership role in your child's life after you are gone.
Most parents want to say some version of, "I love you both equally, but I need you to understand what this will mean for you, and what I hope and do not hope for you." Writing that down — honestly, kindly, with explicit acknowledgment that the sibling did not ask for this role — is a gift to the sibling and to the family's long-term cohesion. I encourage every family to include a version of it.
The Letter of Intent will not protect your child from every hard thing that will happen after you are gone. It will, however, mean that whoever steps in knows who your child is. That is worth an hour of your time and mine.
Carla Alston leads the special needs planning practice at WG Law. Every SNT engagement at our firm includes a Letter of Intent drafting session. Schedule a consultation.