Costs of Raising a Child with Special Needs: The Story of Finn

Meet Finn and his family. Finn is a real boy with autism.

Finn’s father, Jeff Howe, shared his family’s story in “Paying for Finn: A special-needs child” for CNN’s Money Magazine. According to Howe, Finn is representative of 8% of all U.S. children because he is a child with special needs: he is autistic. His household is one of 25% of all U.S. households with a family member with special needs.

As the Howe family has learned, raising a child with special needs comes at great cost, both financial and emotional. Howe goes into great detail explaining his family’s journey with Finn. He does not hold back from sharing the specifics of his family’s finances and the costs associated with Finn’s care.

The financial burden for raising a child with special needs is staggering, to say the least, even for a family with considerable means. For families with less financial resources available to them, the financial burden is even more overwhelming.

Howe briefly mentions how he knows that he needs to set up a trust and will, but is paralyzed by deciding who will be the guardian for his child. This is a frequent issue. Families of children with special needs are looking not only to who may take care of their child in the rare event something happens to the parent prior to their child turning 18 but also for who may permanently care for their child even in adulthood.

It is important for families to remember that a legal guardian of an adult is responsible for making the placement and medical decisions regarding that adult, but is not responsible for providing for the daily care of that adult in the legal guardian’s own home.

Further, any decision that is made may be changed by the parents at a later date to meet the adult child’s needs.

While Howe and his wife have made great strides in planning for the future, the lack of completion of their estate plan, especially a supplemental support trust, makes much of their financial planning irrelevant if something were to happen to them.

Read Finn’s story here. If you have a child with special needs, make sure your plans for your future start with considering the plans for the future care of your child.