APPENDIX C — Start Your Letter of Intent: A Guided Worksheet

A love letter to whoever cares for your child when you no longer can.

A Letter of Intent is not a legal document. It is a love letter to the people who will one day care for your child when you no longer can. It tells them who your child is — not just a diagnosis, but a personality, a history, a set of preferences and fears and joys that only you carry right now.

I know how heavy this feels to start. I carried pieces of mine in different folders for years, because finishing it felt too final — like writing it down meant accepting a day I wasn’t ready to accept. But an unfinished Letter of Intent protects no one. This worksheet is meant to get you moving, one small section at a time, so that whoever loves your child next inherits knowledge instead of guesswork.

You don’t have to finish this in one sitting. You don’t even have to finish it this year. Just begin.

Section 1 — Who They Are, Beyond the Diagnosis

• Full name, nickname, birthdate:

• Three words you’d use to describe their personality:

• What makes them laugh:

• What comforts them when they’re anxious or overwhelmed:

• A story about them you never want anyone to forget:

Section 2 — Birth Family and Origin Story (if relevant)

• What is known about their birth family:

• What you’d want a future caregiver to understand about where they came from:

Section 3 — Daily Life and Preferences

• Daily routine that matters to them:

• Foods they love / foods they won’t touch:

• Sensory sensitivities:

• What a good day looks like for them:

Section 4 — Medical Snapshot

• Diagnoses, in plain language:

• Current medications and why each matters:

• Allergies — food, medication, environmental:

• Immunization history:

• Hospitalizations and surgical history:

• Preferred hospital and physicians:

Section 5 — People Who Know Them

• Medical contacts — doctors, specialists, therapists:

• Key advocates and agencies — case managers, Arc contacts, and similar:

• Friends and family who should be called first:

Section 6 — Legal and Financial Documents Index

• Documents that already exist, and where they live — will, trust, guardianship papers, benefits letters:

• Where your master folder or “NOK box” is kept:

Section 7 — Personal Preferences and Future Wishes

• Living situation preferences:

• Relationship, dating, or marriage wishes, if known:

• Faith and spiritual preferences:

• End-of-life wishes, if you’re ready to include them:

Section 8 — The Words Only You Can Write

This is the section a worksheet can’t fill in for you. This is where you write, in your own words, what you want whoever reads this to know about how much your child has been loved. Take your time. There’s no wrong way to say it.

When You’re Ready to Go Further

When you’re ready for a fuller, guided version of this document, I built mine using the Dani Plan — a platform designed specifically for this purpose. Use code 25HOPE for 25% off an annual plan. But start here, on paper, today, with what you already know. That’s enough to begin.

With gratitude and a Ray of Hope,

Doreen G. Fulton