By: Jay Fedelman

When a family receives a diagnosis of autism or any other neurodivergent condition for their child, they enter a world that is often emotionally and financially overwhelming.

Michael Pereira, founder of The Autism Voyage, knows firsthand the significant impact of a diagnosis on a child’s life. “We lived through the uncertainty that follows a diagnosis,” he explains. “The endless appointments. The IEP meetings. The caregiving and therapy schedules. The complete restructuring of family life around a child’s needs, without losing focus of the whole family dynamic.”

That shift also included financial concerns. How much would therapy cost? Would insurance be enough to cover the healthcare needs of the child? What about the cost of future planning? All of these questions and more ran through Pereira’s head as the family set out to navigate their new normal together.

“These questions led me to become a financial professional,” says Pereira. “I wanted to be able to help families navigate insurance planning. The questions that we had also led me to start The Autism Voyage.”

The Autism Voyage is making a significant difference in the close-knit community of families raising neurodivergent children. As an information- and awareness-driven platform for these families, The Autism Voyage helps find answers through curated blog content, expert insights, and educational resources focused on daily living and building a team of professionals who can help them provide a quality life for their child.

The Unseen Costs of Raising a Child With Disabilities 

As Pereira and other parents of neurodivergent children can tell you, the unseen costs that follow a diagnosis can be significant and nearly impossible to anticipate. “Whether you’re a parent, sibling, grandparent, or other family member planning for a loved one’s future, the pressure to ‘figure it all out’ can be paralyzing,” Pereira shares.

Depending on the severity of the diagnosis, children may require specialized therapies and interventions that comprehensive healthcare plans may not fully cover. Speech therapy or Applied Behavior Analysis therapies can range from $60 to $200 per session (possibly more), and may not be considered medically necessary under specific insurance plans. These gaps leave families making tough decisions about their children’s care. If families are unprepared for out-of-pocket expenses, they may quickly become overwhelmed.

Health insurance gaps can quickly become a primary concern for caregivers of neurodivergent children. There can be significant exclusions, depending on one’s plan. These gaps and medical expenses can add up quickly, decimating budgets and disrupting care. Many families discover that programs like SSI and Medicaid, while potentially helpful, can be confusing and difficult to navigate without expert guidance.

The Employer Benefits Gap That Families Overlook

Beyond medical coverage, many families don’t realize how vulnerable they are, relying solely on employer benefits. Employer life insurance typically covers only one to two times annual salary, while disability coverage usually replaces just a percentage of base salary, excluding bonuses or commissions. These benefits often disappear if a parent changes jobs, is laid off, or retires.

“Families assume they’re protected because they have ‘life insurance through work,’ but they don’t realize how limited that coverage is or how easily it can vanish,” Pereira explains.

For self-employed families, the situation is more precarious. Self-employment is common among families with special needs due to the flexibility it offers for therapies and appointments, but it means starting without any safety net. “Self-employed parents are so focused on keeping their business afloat and their child’s care on track that proactive planning falls to the bottom of the list,” says Pereira. “They’re often the ones who need protection most.”

Planning for the Future

While navigating the present is often front and center, planning for the future can be financially daunting. As families grapple with guardianship, trusts, and the transition to adulthood, the costs of legal fees and other hidden expenses become clearer.

For Pereira, offering resources, education, and direction that may help families anticipate these costs. “The earlier a family begins having these conversations about financial issues, the more options they may have,” he says. “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.”

Helping Bridge Financial Gaps

The Autism Voyage has emerged as a unique, family-centered resource and advocate for those navigating a world following diagnosis. Pereira left behind a career in corporate America to create this platform that blends empathy and practical advice. 

Pereira emphasizes the importance of building a team of professionals to help navigate financial, legal, and emotional challenges following diagnosis. For many families, half the battle is understanding where to start and knowing you need to build a support system and team.

“No single professional can address every aspect of planning for a loved one,” says Pereira. “The families who plan successfully do it with a collaborative team that includes estate attorneys, financial advisors, insurance professionals, and therapists, among others.”

Families who receive a diagnosis for their child often need help, even knowing which questions to ask. What therapies are covered under their insurance? How do they document needs? Where can they turn for expert help?

That’s where The Autism Voyage comes in. The platform offers curated blog posts that break down these issues step by step, addressing crucial topics such as insurance coverage gaps, caregiving burnout, and the sandwich generation. Pereira also shares his personal journey, practical insights, and parenting tips through a weekly newsletter.

Staying informed and seeking guidance from experts may help families anticipate future costs and prepare for what lies ahead.

Like the Pereira family discovered, the days, months, and years following a diagnosis of neurodivergence can be filled with questions and financial surprises. Expenses can be complex, multifaceted, and daunting. Through The Autism Voyage, Pereira has offered a roadmap for families that simplifies complex situations, prompts essential conversations, and connects families to trusted experts who may help bridge financial gaps.