Spectrum Arch, Inc.Most parents of autistic adults carry an enormous amount of knowledge in their heads: which foods are safe, what the early signs of a meltdown look like, which doctor actually listens, why Tuesday mornings matter. If something happened to you tomorrow, how much of that would anyone else know?
A letter of intent is how you write it down. It isn't legally binding, and it doesn't replace a will, a trust, or decision-making documents. It's a guide for whoever supports your son or daughter next, whether that's a sibling, a guardian, residential staff, or a new support worker.
What to include
About the person
Start with who they are, not their diagnosis. What they love, what makes them laugh, what they're proud of, how they communicate, and what they want from life. Ask them to contribute if they can.
Daily life
Routines for mornings and evenings. Food preferences and aversions. Sleep. Sensory needs: noise, light, clothing, textures. What helps when things get hard, and what makes things worse.
Health
Diagnoses, medications and doses, allergies, doctors and specialists with contact details, and the pharmacy. How they show pain or illness, which may not be obvious.
Services and supports
OPWDD eligibility, the Care Manager and their contact information, current services, the day program or job, and Self-Direction details if you use it. Where the important paperwork is kept.
Money and benefits
SSI, Medicaid, any trusts, and who manages what. You don't need account numbers in the letter, just enough for someone to know what exists and where to look.
People
Family, friends, and staff who matter to them, and anyone they should not be left alone with.
Your hopes for the future
Where you hope they'll live, what kind of work or activities you hope they'll have, and your values about their care. This is the part only you can write.
Keeping it useful
- Update it once a year. A birthday is an easy reminder.
- Keep a copy with your will and other important papers, and tell family where it is.
- Write plainly. It will be read by people who don't know your family.
It doesn't have to be finished in one sitting. Start with the daily routines section this week. It's the part most people need first.