When families think about planning for a child with autism, other neurodivergent conditions, or complex medical needs, insurance often gets overlooked or misunderstood. But the right insurance strategies can be essential to long-term care and family continuity. I spoke with Michael Pereira, founder of The Autism Voyage and a licensed life insurance agent, about the role insurance plays in special needs planning and the gaps families should be aware of.
What is the role of insurance in long-term care planning for children with autism, other neurodivergent conditions, or complex medical needs?
Insurance plays a foundational role in long-term planning, but many families don't realize how it connects to their child's future security until a crisis forces the conversation.
The most common question I hear is: "What happens to my child if something happens to me?" Insurance is often part of the answer. Life insurance, for example, can provide funds to care for a child who may need support throughout their lifetime. For families with Special Needs Trusts, life insurance can be structured to fund that trust upon a parent's death, ensuring the child has resources without jeopardizing government benefits like SSI or Medicaid.
Disability insurance is another overlooked area. If a parent becomes unable to work due to illness or injury, how will the family maintain the therapies, services, and support the child needs? Disability coverage can help bridge that gap.
Health insurance is obviously critical for ongoing therapies, speech therapy, occupational therapy, Applied Behavior Analysis, and medical treatments, but families should understand what's covered, what's excluded, and what happens if employment or marital status changes.
As an insurance professional and a father raising a child with autism, I see insurance as one piece of a larger puzzle. It's not about buying products, it's about asking the right questions: What risks does my family face? What happens if the unexpected occurs? How do we ensure our child is protected regardless of what life brings?
These questions are best explored with an insurance professional who understands special needs planning and can coordinate with the family's estate attorney and financial advisor.
What life insurance mistakes do families with special needs children commonly make?
Even families who think they're well-covered often discover gaps when it's too late to address them. Here are some of the most common oversights I see when working with families.
Life insurance beneficiary mistakes. One of the most common planning gaps I see involves how life insurance proceeds are structured. For families with a child with special needs, it's not just about who's named as the beneficiary, but understanding how ANY large lump sum can impact government benefits eligibility. Life insurance should typically be structured to pay into a Special Needs Trust to protect benefits. Families should review beneficiary designations with their estate attorney and a benefits specialist.
Assuming employer coverage is enough. Employer-provided life insurance is often insufficient for families with children who have special needs. A typical policy might provide one to two times annual salary, but if your child needs lifetime support, that amount may not be adequate. Families should explore whether supplemental coverage makes sense for their situation.
Outdated policies after life changes. Divorce, remarriage, or the death of a spouse can create gaps if life insurance policies aren't updated. I've talked with families who remarried and later realized their ex-spouse was still listed as beneficiary, or their policy amount no longer reflected their child's needs. Major life transitions should trigger a review of all insurance coverage.
No coverage on the stay-at-home parent. Many families insure the income-earning parent but overlook the stay-at-home parent. If the caregiver parent passes away, who provides the daily care? The cost to replace that caregiving, especially for a child with special needs, can be substantial. Both parents should be considered when evaluating life insurance needs.
Gaps between divorced parents' coverage. In divorced families, confusion about which parent maintains life insurance, who owns the policy, and what happens if coverage lapses can leave children unprotected. These coordination issues should be addressed in divorce agreements with professional guidance.
The key is not to assume you're covered, but to actually review your policies with professionals who understand your unique challenges. An insurance professional, estate attorney, and financial advisor working together can identify gaps before they become crises.
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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