Parenting Pointers - 5 Things to Include in Your Letter of Intent (and Why Every Family Should Write One)

A Letter of Intent is one of the most important, and most overlooked, documents families can create. Whether you're raising a child with autism, another neurodivergent condition, or complex medical needs, this personal guide tells future caregivers who your child really is. Unlike legal documents, it captures the daily detail that makes all the difference in your child's care. I recently spoke with Michael Pereira, founder of The Autism Voyage, about why every family should have one and what it should include.

1. Why do families raising children with autism, other neurodivergent conditions, and/or complex medical needs need a letter of intent?

A Letter of Intent is essentially a love letter to whoever may care for your child in the future. Whether your child has autism, another neurodivergent condition, or complex medical needs, this document captures what other family planning paperwork may not.

Legal documents like wills and trusts tell people what to do with assets. A Letter of Intent tells people how to care for your child - their routines, preferences, sensory sensitivities, communication styles, medical history, and the little things that make them who they are.

As a father of two, one of whom has autism, I think about this constantly: What happens if you're not here to explain your child's needs? That he needs his weighted blanket to sleep and that he gets overwhelmed in crowded spaces, or how he communicates better with visuals than words.

These details are essential for continuity of care. A Letter of Intent bridges the gap between planning and practical caregiving. Without one, future caregivers, whether family members, guardians, or trustees, are left guessing about your child's needs.

I encourage every family to start this document early and update it regularly. Your child's needs will evolve, and so should the Letter of Intent.

2. What should a letter of intent include?

While there's no single template, most Letters of Intent cover several key areas that help future caregivers understand your child's complete picture.

Personal history and family background. This includes your child's diagnosis story, developmental milestones, and family dynamics. Who are the key people in their lives? What relationships matter most to them?

Daily routines and preferences. What does a typical day look like? What time do they wake up? What foods do they prefer or avoid? What are their sensory triggers? This section is often the most valuable for day-to-day caregivers.

Medical information. Current diagnoses, medications, doctors, therapists, and any medical history that future caregivers need to know. Include insurance information and how medical decisions should be handled.

Communication and behavior. How does your child communicate? What calms them when they're upset? What triggers anxiety or meltdowns? What does their behavior communicate that words might not?

Long-term wishes and values. What kind of life do you envision for your child? What values do you want caregivers to honor? What are your hopes for their independence, living situation, and quality of life?

This list is a starting point, not a limit. Many families also include education and therapy details, what services the child is receiving, what's working well, and what approaches have been tried. Others add sections on religious or cultural preferences, favorite activities, or guidance for handling specific situations. The Letter of Intent should reflect your child's unique needs, so add whatever will help future caregivers provide the best possible care.

Families should work with their estate planning attorney and special needs planner to ensure the Letter of Intent complements their legal documents. The Letter of Intent isn't legally binding, but it provides the context that legal documents can't capture.

3. Who needs to be involved in long-term planning for children with autism, other neurodivergent conditions, or complex medical needs?

Long-term planning isn't a solo effort; it requires a coordinated team of professionals and family members working together.

Estate planning attorney. They create the legal framework: wills, trusts, guardianship designations, and powers of attorney. For families with children who have special needs, working with an attorney who understands Special Needs Trusts is critical to protecting government benefits.

Financial advisor or insurance professional. They help families explore funding mechanisms for long-term care, including life insurance that can fund a Special Needs Trust, disability coverage, and strategies for financial security.

The family's support network. Grandparents, siblings, aunts, uncles, and anyone who might play a role in your child's care should understand the plan. Many families assume a sibling will "take over," but that sibling may not know what's expected or may not be equipped for that responsibility.

Therapists and educators. The professionals currently working with your child can provide valuable input for the Letter of Intent and help identify what support your child may need long-term.

Your child (when appropriate). Depending on their abilities, involving your child in planning conversations can help them understand their own needs and express their preferences for the future.

As an insurance professional working with families raising children with special needs, I've seen what happens when these team members aren't coordinated. Parents assume the attorney "handled everything," but the trust isn't funded, or grandparents expect to be guardians, but they're not named in legal documents, or siblings are surprised to learn they're expected to be caregivers.

The Letter of Intent can actually serve as a coordination tool; it captures all the information that these professionals need and ensures everyone is aligned on the child's care.

Disclaimer: This article is for informational purposes only and does not constitute legal, clinical, tax, or financial advice. Families should consult with qualified professionals for advice specific to their situation.

Michael Pereira is the founder of The Autism Voyage®, an awareness-driven platform helping families raising children with autism, related developmental conditions, and other neurodivergent diagnoses navigate the emotional and practical realities of long-term planning. As a father of two, one of whom is neurodivergent, and a licensed life insurance agent, Michael brings a unique perspective that blends lived experience with professional insight. His mission is rooted in education and empowerment.