The Letter of Intent: A Successor Caregiver’s Field Manual
The single document that lets someone who has never lived with your adult know exactly how to support him next Tuesday. Routines, communication, medical history, triggers, calming tools, staffing, community.
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Routines. Communication. Medical. Triggers. Calming tools. Staffing. Community. Roughly twenty pages. Updated annually. Lifesaving.
Pull from memory, calendars, IEPs, clinical notes. Write the way you would tell a friend, not a court. Specificity beats polish.
Named guardians, rep payee, trustee, sibling, two trusted friends. Read it together. Mark what is unclear.
Tie the update to a birthday or anniversary. One hour, once a year. The successor needs current information, not a museum piece.
Open a blank document and write the morning routine tonight.
Just one section. Forty-five minutes. Hour by hour. The way you would explain it to a sister who has never been in your house at six in the morning. The rest of the manual will fall in behind it. Save the file as Letter_of_Intent_[Name]. The next section is for next week.
The bus accident question
If a bus hits you tomorrow, who knows that your adult cannot eat eggs and panics around fluorescent lights? The letter is the answer. The lack of a letter is the catastrophe.
Routines section
Morning, school or work, evening, weekend, sleep. Hour by hour. The successor needs a script, not a philosophy. Generic does not survive Wednesday.
Triggers and calming tools
Lights, sounds, smells, foods, environments. The tools that help: the favorite blanket, the YouTube channel, the drive around the block, the song.
Annual review trigger
Tie the update to a birthday or anniversary. Set a calendar reminder now. The 25th of June. Or whatever day works. Annual is the rule.
Medical history
Diagnoses, current meds, allergies, last hospitalization, primary doctor, key specialists, the dentist who knows. One page if the doctors cooperate.
Community connections
Who already knows your adult and who can be called when the manual runs thin. Names, phone numbers, the church or club or library or neighbor.
Sections of the letter of intent
After my husband died, my sister-in-law moved in for six weeks to give me a break. I handed her a fifteen-page letter of intent. She read it that night. She knew exactly what to do at four-thirty in the morning when my son started pacing the kitchen because the milk had run out. She knew which song to put on, which mug to use, and where the spare gallon was hidden in the garage. The letter did all of that.
When you sit down to write
- Open a blank document. Title it Letter of Intent for [Adult’s name].
- Write the morning routine first. One section. Forty-five minutes.
- Save. Walk away. Come back in two days for the next section.
- After all seven sections are drafted, share with two trusted reviewers.
- Print. One copy in the safe. One in the binder. One with the named successor.
- Identity & legal status section drafted
- Routines section drafted
- Communication section drafted
- Medical section drafted
- Triggers & calming section drafted
- Staffing section drafted
- Community section drafted
- Reviewed by two named successors
- Annual review on calendar
The letter is not legal. The letter is everything that the legal documents cannot hold.
The full story · For readers who want context
Patricia kept her version on a thumb drive in the kitchen drawer. She updated it every Father’s Day, the same week she filed her income taxes. She did this for nineteen years before her husband had the heart attack. The week of the funeral, she handed the thumb drive to her sister-in-law, who arrived on a Tuesday from Toledo with one suitcase and no real idea what to do at four in the morning. Patricia slept for the first time in eleven days. The letter did the work that grief made impossible. The letter does that work for any family that has built one. The letter does no work at all for the families that have not.
The bus-accident question.
Here is what they will not tell you on the front of any planning brochure. The legal documents in your family’s binder, the will, the special needs trust, the guardianship order, the rep payee designation, the durable POA, do not tell anybody how to take care of your adult on Wednesday. They tell people who has authority and who controls money. They do not tell anybody what milk to buy or which song calms the four-thirty pacing or how to handle the haircut. The legal documents are a chassis. The letter of intent is the engine.
Imagine the bus. A bus hits you tomorrow. Who walks into your kitchen at four-thirty in the morning to find your adult? What do they need to know in the first hour? What do they need to know by the end of the first day? By the end of the first week? The letter answers all of that. The lack of a letter is the catastrophe behind the catastrophe.
The seven sections.
A letter of intent in our tradition has seven sections. Other versions exist. The categories overlap. Use whichever skeleton helps you write, and adapt the section names to fit your family. The seven we use most often: identity and legal status, routines, communication, medical, triggers and calming, staffing, community. Together they fill roughly fifteen to twenty-five pages, depending on how much detail your adult’s daily life demands.
The letter is not legal. The letter is binding only in the sense that anyone who loves your adult will treat it as binding. It is not filed with a court. It does not need a notary. It does not need to be perfect. It needs to be specific, current, and shared.
Routines deserve hour-by-hour detail.
The single most-skipped trap in writing a letter is generality. “He likes a calm morning” is not a routine. “Six fifteen, alarm clock with the gradual lights, twenty-second hug at the door, oatmeal with one specific brand of cinnamon, the green mug never the blue mug, the same morning playlist on the kitchen speaker, no television before eight” is a routine. The successor cannot reverse-engineer specificity from generality. Write it the way you actually do it.
Triggers and calming tools are the most-skipped section.
Most families know the triggers. Most families never write them down because they live them every day and forget that other people do not. Lights. Sounds. Smells. Foods. Environments. The specific cousin who shows up unannounced. The specific song that comes on at the grocery store. The specific lobby with the talk-show television that everyone but your adult pretends not to notice.
Then write the calming tools. The blanket. The YouTube channel that has been the same since age twelve. The fifteen-minute drive around the block. The hum of the dishwasher. The peanut-butter sandwich made with the crusts cut off in a particular pattern. Successors can usually figure out the triggers from observation. They almost never figure out the calming tools without help.
Staffing tells the successor who already does what.
The day program. The Direct Support Professionals who cover Tuesdays and Thursdays. The respite worker who comes once a month for the weekend. The sibling who handles the dental appointments. The neighbor who walks the dog when you are at the hospital. Names. Phone numbers. The hours they cover. The agency or the lack of one. What each person knows about your adult that nobody else knows.
This section is dense and gets stale fast. It is the most-changed section year over year. The annual review is built around this section more than any other. People retire. Agencies close. New supports replace old ones. A staffing section that is two years old is fiction. Update it like a payroll.
Community tells the successor who to call when the letter does not answer.
Friends. Neighbors. Faith community. Clubs and groups. The librarian who keeps the new graphic novels behind the desk. The barista at the coffee shop your adult walks to on Saturday. The priest or rabbi or imam who has visited the home. The Special Olympics coach. The bowling alley that lets your adult set up the lane the same way every week. Names. Addresses. The role they play. The story that explains the relationship.
Community is what survives. Successors can learn the routines and the medical history. Successors cannot rebuild the community ties from scratch. Write the section so the successor can step into a relationship rather than start one cold.
The annual review.
Tie the update to a date that already exists. A birthday. An anniversary. Tax day, if you must. Set a calendar reminder a week before. Block off two hours, not one, because the first thirty minutes will be staring at last year’s version and remembering what has changed. The update is not a rewrite. The update is a maintenance pass. Most years, fewer than ten percent of the letter changes. The ten percent that does change is the part that would have failed your adult most.
The legal companion: trusts, guardianship, rep payee.
The letter is not a substitute for the legal binder. It is a companion to it. The will, the special needs trust, any guardianship or supported decision making documents, the rep payee paperwork, the healthcare proxy, the HIPAA releases. These do the legal work. The letter does the human work. Both belong in the same drawer, the same file folder on the laptop, the same conversation with the named successors. When one is referenced in a hospital, the other is referenced fifteen minutes later.
Your assignment this week.
Open a blank document. Write the morning routine. Save the file. Set a reminder for next Saturday to write the next section. Some states fund formal “future planning” workshops through their Centers for Independent Living and Arc affiliates that walk families through the letter section by section. Pennsylvania funds the Achieving a Better Life Experience program with future-planning workshops attached. Ohio funds family-led future planning through its DD councils. Massachusetts has a robust state-funded letter-of-intent template through its DDS. Michigan funds less of this. Other states made different choices. Michigan didn’t. The bus is not waiting. Start tonight. Together.