What is a Letter of Intent?
It's the manual for your person. Everything a new caregiver would need to know, written by the people who know it best.
What calms them. What scares them. The breakfast they'll actually eat. The doctor who listens. The word they use when they're in pain.
A Letter of Intent is not a legal document. Courts, guardians and trustees use it as guidance. That means you don't need a lawyer to write one, and you can start tonight.
It works alongside the legal pieces: a will, a special needs trust, a guardianship or supported decision-making agreement. Those say who's in charge. The letter says how to do it well.
When do you need one?
Now. Most families write it after a scare: a hospital stay, a diagnosis, a parent getting sick. It's easier to write on a calm Tuesday.
It also matters if you're an adult living on your own. Write one for whoever helps you when you can't speak for yourself: a roommate, a friend, a coach, a future support worker.
Update it once a year. A birthday is an easy reminder.
What happens if you don't have one?
The people stepping in start from zero. They guess at routines. They repeat things that didn't work. Your person has to retrain every new helper, often during the worst week of their life.
A guardian or trustee can follow the law and still miss everything that makes a day go well.
What goes in it
Write in plain words. Use your person's own words wherever you can. A section can be three lines.
- Who they are. Personality, strengths, what makes them laugh, what they're proud of.
- Daily routine. Wake-up, meals, bedtime, the rituals that keep the day steady.
- Medical. Diagnoses, medications and doses, doctors, therapists, allergies, insurance.
- Behavior support. Early warning signs, triggers, what helps, what never to do.
- Communication. How they ask for things, show pain or say no. Devices, signs, words that mean something specific.
- School or work. Programs, goals, people who've helped.
- Where and how they want to live. Their wishes first, then yours.
- Social life. Friends, activities, faith community, the people who matter.
- Benefits and money. SSI, Medicaid, waivers, ABLE account, special needs trust, who the trustee is.
- End-of-life wishes. Yours and theirs, if they've shared them.
How to write it without it taking a month
- Set a 15-minute timer. Write one section. Stop.
- Talk instead of type. Voice memos count. So do notes on your phone.
- Write it with them, not for them. Ask your person what they want people to know. Put it in their words.
- Sign and date every version. Old versions are still useful history.
- Hand out copies. The future guardian, the trustee, your attorney if you have one, and one place everyone knows to look.
Done is better than perfect. A rough letter on the fridge beats a polished one that never gets written.
Who to talk to
Free and low-cost options first.
- Your local Arc chapter. Several Arc chapters publish free Letter of Intent guides and run future-planning workshops.
- Legal aid. Free help with the legal documents that go with the letter, if you qualify.
- Law school and university clinics. Many help with wills, trusts and guardianship for free.
- A special needs planning attorney when you're ready to set up a trust or guardianship. Bring your letter. It saves time and money.
The letter itself costs nothing. You don't need anyone's permission to write it.
How NixIt fits
Most of what goes in a Letter of Intent already lives in NixIt: the routines, the calendar, the people in your Circle. It should never have to be rebuilt from memory.