A Letter of Intent is not a legal document. It will not be filed with a court, recorded in a trust, or enforced by anyone. That is exactly what makes it so important.
A will tells the world what happens to your assets. A trust protects your loved one’s benefits and manages the money. A Letter of Intent tells the people who will care for your loved one who they actually are.
It is the document that carries your knowledge forward. And for most families, it is the one that matters most in daily life after you are gone.
What a Letter of Intent Is and What It Is Not
A Letter of Intent is a written document, created by you, that describes your loved one’s life in the detail that no legal document ever captures. It is not a will. It does not create legal obligations. It cannot override a trust or a court order.
What it can do is give a future caregiver, trustee, sibling, or care coordinator the information they need to provide good care and make good decisions, without having to guess.
Think of it as the owner’s manual for your loved one’s life. The legal documents tell people what they are allowed to do. The Letter of Intent tells them what they should actually do.
What to Include
A Letter of Intent does not have a required format. The goal is completeness and clarity. Most families find it helpful to organize it into several areas.
Daily life and routines. What does a typical day look like? What time does your loved one wake up, eat, and go to sleep? What helps them feel calm and regulated? What tends to cause distress? What are their comfort items, favorite foods, and preferred activities?
Medical history and healthcare. Current diagnoses, medications, dosages, prescribing physicians, allergies, and any medical history a new provider would need to know. Include the names and contact information for current doctors, therapists, and specialists.
Communication. How does your loved one communicate? Do they use verbal speech, an augmentative communication device, sign language, or pictures? What do their expressions and behaviors mean to someone who knows them well? What should a new caregiver know about how to communicate effectively with them?
Behavioral considerations. Are there known triggers for challenging behavior? Are there strategies that help de-escalate difficult situations? What has not worked? What should never be tried?
Relationships and social life. Who are the important people in your loved one’s life? Friends, neighbors, faith community members, staff who have been particularly meaningful? Who should be kept in their life, and who should not?
Education and employment. School history, IEPs, vocational programs, current or past employment, and any relevant documentation.
Government benefits and finances. Which programs does your loved one receive, including SSI, Medicaid, SSDI, Disabled Adult Child (DAC) benefits, or waiver services? Where are the ABLE account and Special Needs Trust documents? Who are the trustees, care coordinators, and advisors? Where are the account statements and benefit letters kept?
Housing and living support. Where does your loved one currently live, and what works about that arrangement? What are their preferences for living situation in the future? What level of support do they need day to day?
Values, faith, and quality of life. What brings your loved one joy? What does a good day look like for them? What do you want future caregivers to understand about who your loved one is as a person, beyond their diagnosis and support needs?
Why It Matters More Than Most Legal Documents
The people who will care for your loved one after you are gone, whether that is a sibling, a professional caregiver, a group home manager, or a successor trustee, will not have the decades of knowledge you have accumulated. They will be making decisions about someone they may know only on paper.
A well-written Letter of Intent changes that. It gives future caregivers a foundation. It reduces the risk that your loved one will be treated as a diagnosis rather than a person. It gives trustees the context they need to make distribution decisions that reflect your loved one’s actual preferences and needs, not just a generic interpretation of the trust document.
It also reduces conflict. When siblings or other family members disagree about what a loved one would want, a detailed Letter of Intent written by the primary caregiver carries real weight, even without legal force.
Key takeaway: A Letter of Intent creates no legal obligations, but it may be the most important document in your loved one’s plan. It is the only place where your years of knowledge about your loved one are written down in a way the next caregiver can actually use.
Where to Keep It and Who Should Have a Copy
Creating the Letter of Intent is only part of the job. The people who will need it most should have access to it before a crisis, not after.
At minimum, copies should go to the trustee of the Special Needs Trust, any named successor guardians, siblings or other family members who will be involved in your loved one’s care, and the primary care coordinator or case manager if one is in place. Keep a copy with your estate documents and make sure your attorney knows it exists.
A document that only one person knows about cannot do its job.
How to Maintain It
A Letter of Intent is only useful if it stays current. A document written when your loved one was twelve is not the same as one written when they are thirty-two.
Review it at least once a year. Update it after any significant change: a new diagnosis or medication, a change in living situation, a change in behavior, a shift in communication method or ability, a new care team member, a change in benefits, or a family transition such as the death of a grandparent or the birth of a sibling’s child.
Some families keep a working copy on their computer and make small updates throughout the year, then do a full review each January or around their loved one’s birthday. Others keep a printed copy with their estate documents and update it at the same time they review the rest of the plan.
How to Get Started
The biggest obstacle most families face is not knowing where to begin. The answer is to start anywhere.
Write one section today, even if it is only a paragraph. A partial Letter of Intent is better than none. You can add to it over time. There is no format requirement and no wrong way to do it.
If you are not sure what to include, start with the questions a new caregiver would ask on their first day. What does your loved one need? What do they love? What do they fear? What would you want someone to know if you could not be there to explain it yourself?
A Plan That Works Without You at the Center
A durable special needs plan is not just about protecting benefits and managing money. It is about making sure the people who step in after you can do so with confidence, context, and care.
The Letter of Intent is how you stay present in your loved one’s life even when you cannot be there in person. If you have not started one, or if the one you have has not been reviewed in years, we are glad to help you think through what it should include and how it fits into the broader plan.