When a parent has a child with special needs, whether a physical disability, chronic illness, or neurodivergent condition, contingency planning is often avoided. Perhaps they’re unsure how to start, or hesitant to face a future when they’re no longer around.

But preparing for the unknown can be a profound act of love, one that safeguards a loved one’s financial security and ensures consistent care well into adulthood.

“As a father of a neurodivergent child, I understand why families put off these conversations,” says Michael Pereira, founder of The Autism Voyage. “It forces you to confront difficult realities. But the families who include the right people in their planning, especially grandparents, find clarity instead of fear.”

Why grandparents belong in the conversation

When crafting a contingency plan, it can be helpful to include grandparents in the planning stages. In many families, grandparents are natural secondary caregivers who have been present from day one, trusted, experienced, and deeply bonded with their grandchildren. Yet even when they’re part of daily life, grandparents are often unaware of the need for formal, long-term planning or the critical role they can play.

Including them isn’t just sentimental. It’s strategic.

Grandparents frequently have the time and resources to serve as strong advocates in school meetings, medical appointments, and benefit coordination. They often share the parents’ values and vision for their loved one’s future. And perhaps most importantly, they can provide continuity of love and trust during what would otherwise be a destabilizing transition.

What contingency planning means 

Contingency planning means outlining the “who, what, where, and how” of care should parents become temporarily or permanently unable to meet their loved one’s needs. For children and adults with special needs, this is uniquely complex; caregivers must account for education plans, therapy schedules, medications, housing, communication preferences, and daily routines.

A well-developed plan should address several key areas:

First, a clear designation of guardianship (if applicable) or emergency caregivers. This is where grandparents often play a critical role; they’re frequently the first tapped to step in. But parents need to have honest conversations about what grandparents are comfortable taking on physically, emotionally, and financially.

Second, organized documentation. A letter of intent, medical records, therapy plans, benefit information, insurance details, and trust documents should be accessible to everyone involved. A list of key professionals, teachers, doctors, and therapists helps ensure continuity of care.

Third, a detailed profile of the individual. Communication preferences, routines, emotional comfort strategies, and personality insights are essential, especially for those who struggle with change. This information can make the difference between a difficult transition and a successful one.

No single professional can address every area of planning, but families should always seek guidance from qualified experts across legal, financial, and care coordination disciplines.

The planning gaps families miss

Too often, grandparents are assumed to be part of the backup plan without ever being formally included in it.

“Families tell me their parents would ‘of course’ step in if something happened,” Pereira notes. “But when I ask whether the grandparents have access to the trust documents, know the therapy schedule, or understand how benefits work, there’s usually silence.”

These gaps create risk. If grandparents don’t have legal documentation in order, the transition won’t be smooth. If they aren’t familiar with their loved one’s needs and routines, care quality suffers. If they don’t have access to respite care or support resources, burnout becomes inevitable.

Proactive planning addresses these gaps before a health scare or emergency forces the conversation.

Critical considerations before formalizing the plan

Before including grandparents in a contingency plan, families should discuss:

Are the grandparents healthy enough to take on a caregiving role? Do they live close enough to realistically fulfill it? Are they familiar with their loved one’s specific needs, abilities, and daily routines?

Do the grandparents have their own legal documentation, wills, trusts, powers of attorney, in order? Do they have access to respite care, counseling, or other support if they become overwhelmed?

These conversations require honesty from everyone involved. Grandparents should feel empowered to share what they can realistically offer, and families should plan accordingly.

Inclusion as an act of love

Inclusion is at the heart of how families raising a loved one with special needs approach the world. That same principle applies to who gets included in contingency planning.

When parents and grandparents work together, sharing information, coordinating with professionals, and preparing for the future, the persistent “what ifs” transform into confidence.

“Planning isn’t about expecting the worst,” says Pereira. “It’s about making sure the people who love your child are equipped to care for them, no matter what. That’s not fear. That’s love in action.”

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. Drawing from his experience as a father of two, one of whom is neurodivergent, Michael brings a unique perspective that blends lived experience with professional insight. Through The Autism Voyage®, he curates trusted content, expert collaborations, and family-centered resources that simplify complex planning topics. In his professional work, Michael focuses on insurance-based strategies as part of a broader, team-driven approach to helping families prepare for the future. His mission is rooted in education and empowerment, providing families with clarity, confidence, and connection as they plan for what lies ahead.