The Conversation Too Many Families Avoid: How to Start Planning for Care for Neurodivergent Children

As any parent can tell you, planning for a child’s future can be an all-encompassing worry. Will they choose to go to college? Will they marry and start a family? How will they fare once they are on their own?

These typical parental concerns take on new dimensions for parents of children with autism and other neurodivergent conditions. Many parents find themselves in uncharted territory following diagnosis, wondering what the future holds and asking themselves a question that keeps them up at night: “What happens to my child when I’m not here?”

It’s a conversation too many families avoid, not because they don’t care, but because they don’t know where to start.

“As a father of two, one of whom is neurodivergent, I understand the fear behind thoughts like ‘What happens when I’m not here?’ or ‘What happens if I’m not here to explain my child’s needs?’” says Michael Pereira, founder of The Autism Voyage®.

The Pereira household has lived through the uncertainty that follows a diagnosis: the endless appointments, IEP meetings, and therapy schedules — not to mention the complete restructuring of family life around a child’s needs, without losing focus on the whole family dynamic.

Pereira struggled to find the guidance he needed, so he set out to become a financial professional with a mission to help families navigate insurance planning. In addition, he created The Autism Voyage®, an information and awareness-driven platform for families raising neurodivergent children.

Why future planning for children with disabilities feels overwhelming (and why it matters)

Demands can be overwhelming for caregivers of autistic children or other loved ones who are neurodivergent. Between managing therapies, coordinating school activities that may include IEP meetings, navigating complex benefit systems, and keeping up with daily routines, it can feel almost impossible to think a week ahead, much less years. 

The pressure to “figure it all out” can be paralyzing. However, without proactive planning, families of neurodivergent children can face loss of critical government benefits, gaps in care during family transitions or emergencies, financial and housing instability, and a lack of clear guidance for future caregivers or advocates.

“The earlier a family begins having these conversations, the more options they may have,” says Pereira. “There are legal protections, financial tools, and community resources specifically designed to support individuals with disabilities, but many families don’t know they exist until it’s too late.”

What planning for the future looks like when raising a child with a neurodivergent condition

The Autism Voyage® was created to provide curated, trusted content and expert insights that help families understand which questions to ask and which topics to consider as they begin planning for the future. 

With a team-based approach, the whole family dynamic can be considered while planning. Each family member is protected, and the unique needs of the person with the neurodivergent condition are addressed.

There are a number of key topics that families can address with their planning team, where each member brings their specific set of skills to the table. Topics that families should consider include:

Financial Planning

Financial conversations should have the primary goal of protecting each member while ensuring that planning will not jeopardize eligibility for critical government benefits like SSI or Medicaid. Families can explore the benefits of establishing trusts and how to structure and invest assets and brokerage accounts.

Legal Protections

Legal experts also need to consider the whole family when discussing issues such as asset protection, guardianship arrangements, powers of attorney, medical agents, and trust structures. Legal discussions are not just about documents; they are about making sure everyone in the family understands the nuances of legal matters and is on board with the plan.

Care Continuity

One of the main questions parents and caregivers have when a loved one is diagnosed with a neurodivergent condition is “What happens if something happens to me?” What families may need is a Letter of Intent. This document ensures that everyone involved understands a loved one’s story, needs, preferences, and daily routines. Planning for care continuity means having difficult conversations about worst-case scenarios, identifying contingent guardians, and creating a clear transition plan that protects your loved one over their lifetime.

Insurance-Based Strategies

For many families, a critical piece of the larger planning puzzle is insurance-based strategies. An insurance planner can structure policies to fund special needs trusts while preserving benefit eligibility and addressing parent protection, like long-term care and income replacement, among other strategies.

The path forward to help your child

Planning for an uncertain future isn’t easy. It requires vulnerability, difficult conversations, and confronting fears many would rather avoid. But preparation brings something invaluable: clarity.

“You don’t want to wait for a crisis moment to start thinking about these things,” Pereira says. “The families who plan ahead sleep better at night, not because they have all the answers, but because they’ve taken steps to protect what matters most.”

Through The Autism Voyage® and his work in insurance-based planning, Pereira helps families transform fear into action, one conversation at a time. For families raising neurodivergent loved ones, the voyage ahead may be uncertain, but it doesn’t have to be navigated alone.