When families plan for a child with autism, other neurodivergent conditions, or complex medical needs, the focus is usually on parents. But grandparents often play critical roles in caregiving, yet they're rarely included in formal planning conversations. I spoke with Michael Pereira, founder of The Autism Voyage, about why contingency planning should include grandparents and other extended family members.
What is contingency planning and why is it important to include grandparents?
Contingency planning answers the question every parent dreads: "What happens to my child if something happens to me?" It's about creating backup plans for caregiving, decision-making, and financial support if parents are unable to fulfill those roles, whether temporarily or permanently.
Grandparents are often the unspoken contingency plan. When parents need respite, grandparents step in. When there's a family emergency, in some cases, grandparents are the first call. In many families, grandparents are already active caregivers, attending therapy appointments, helping with daily routines, and providing essential support.
But here's the problem: grandparents are rarely included in formal planning conversations. They may not be named in legal documents. They may not understand the child's full care needs. They may not know what's in the Letter of Intent, or that one even exists. And they may have their own health or financial limitations that make them unsuitable as long-term caregivers, even if everyone assumes they'll "take over."
As a father of two, one of whom has autism, I've had conversations with families carefully evaluating what role grandparents can realistically play in their plan. Common questions families ask: Are grandparents equipped to be full-time caregivers if something happens to us? Do they understand the child's routines, therapies, and sensory needs? Are they named appropriately in legal documents?
These are difficult conversations, but they're necessary. Including grandparents in planning means being honest about their capabilities, their willingness, and their role, while ensuring they have the information they need to support your child if called upon.
Families should discuss contingency plans with their estate planning attorney to ensure grandparents are appropriately named (or not named) in guardianship designations, and that everyone understands their role.
What other family members or roles should be considered with contingency planning?
Grandparents are often the first backup plan families consider, but comprehensive contingency planning looks at the entire support network.
Siblings. Many parents assume an older sibling will eventually care for their child with special needs. But has anyone asked the sibling if they're willing? Do they understand what's involved? Siblings should be part of planning conversations, not to pressure them, but to ensure everyone has realistic expectations. Some siblings embrace this role; others have their own lives, careers, or limitations that make it impractical. A family therapist or special needs planner can help facilitate these discussions.
Aunts, uncles, and extended family. Sometimes the best caregiver isn't a grandparent or sibling, it's an aunt or uncle who has a strong relationship with the child and the capacity to provide care. These family members are often overlooked in formal planning but can be valuable parts of the support network.
Godparents or close family friends. Legal guardianship doesn't have to be a blood relative. Some families designate trusted friends who understand the child's needs and have committed to being part of their support system.
Your child (when appropriate). Depending on their abilities, your child may have opinions about who they'd want involved in their care. Including them in these conversations, at an appropriate level, honors their voice and can reveal preferences you might not have considered.
Professional caregivers or group home settings. For some families, the honest answer is that no family member is equipped, or available, to be a full-time caregiver. In these cases, planning should include exploring professional caregiving options, group homes, or supported living arrangements. This isn't a failure; it's realistic planning that ensures the child receives appropriate care.
Trustees vs. guardians. An important distinction many families miss: the person who manages your child's money (trustee) doesn't have to be the same person who provides daily care (guardian). Sometimes a family member is perfect for caregiving but shouldn't manage finances, or vice versa. Separating these roles can actually strengthen your plan.
The key is not to make assumptions. Contingency planning requires honest conversations with everyone who might play a role in your child's future. Working with an estate planning attorney and special needs planner can help families think through all the possibilities and create a plan that doesn't rely on assumptions or unspoken expectations.
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.
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