Column: Raising A Child With Special Needs

April 21, 2022

Carla Seely Bermuda October 2018[Written by Carla Seely]

The Merriam-Webster.com Dictionary defines the term special needs as “any of various difficulties [such as a physical, emotional, behavioral, or learning disability or impairment] that causes an individual to require additional or specialized services or accommodations [such as in education or recreation].”

For families with special needs children who have disabilities, everyday life can be extremely complex and completely different from one day to the next. In addition to navigating these complexities, the extra monetary responsibility of raising a child with special needs, can be exhausting and financially overwhelming.

A friend of mine has a child with special needs. On the many occasions that I’ve asked her what worries her the most, she has always responded that planning for his future needs is her primary concern, especially when she and her husband pass away.

As it turns out, my friend’s concerns are not unfounded. In 2018, it was stated in the Consumer Education Services blog that parents of special needs children are not adequately securing their financial future. What’s more, nearly one-third of parents with special needs children commit more than 40 hours a week to their care and dedicate more than $1.4m to them over the course of their child’s life [East 2018].

If you are a parent of a special needs child, you may find it easy to relate to this information and, like my friend, you may find it weighing heavily on your mind. However, there are a few things you can consider to alleviate some concern and create a more financially secure future for your special needs child:

Prepare for age 18

When a child turns 18, he or she is legally presumed competent to make their own decisions on medical, financial and educational issues. For parents of a special needs child, there are two options they can pursue to maintain influence over their child’s care: power of attorney [POA] or legal guardianship. It’s important that parents understand the procedures involved and plan to ensure that their child continues to receive the support and care he or she needs in their adult years.

Draft a last will and testament

It’s important for parents of special needs children to declare how their estate is to be distributed upon their death. An estate attorney can work with you to prevent the automatic distribution of assets to your special needs child.

Create a special needs trust

A special needs trust is a means to provide stability and security for special needs children should something happen to their parents or guardian. These can be funded through gifts, life insurance, investment accounts, mutual funds, certificates of deposit [CD], and be real property.

Choose an appropriate trustee

There are typically two choices when it comes to selecting a trustee: a family member or a lawyer. The appeal of a family member is that they understand the needs of the child, will have his or her best interests at heart, and will not charge fees. However, administering a trust is a complex and important responsibility. A professional trustee or lawyer has experience in financial management and can make sound—rather than emotional—decisions when it comes to finances.

When one of your children is a child with special needs, a large portion of your time is naturally focused on that child since he or she needs the most attention. As my friend also mentioned to me, another great challenge faced by you as the parent is to ensure that other members of the family also receive enough quality time with you. My friend struggled to divide her time between her children, especially when one needed far more attention, but as she bluntly stated, “it takes two people to create a child and it takes two people to raise a child; it’s not just the mother’s responsibility. We are a team.”

At the end of the day, the joys of raising children will almost always far outweigh the associated costs, but the fact remains that raising children in today’s world can be expensive. It’s hard not to worry about how your child will manage if you’re not around to help support him or her. However, with proper planning and preparation, you can help to ensure your child has the help they need, both now and in the future—the best approach to alleviate some concerns is to address them sooner than later, understand the long-term financial commitment, and create a path to secure both your child’s financial future and your own.

- Carla Seely is the Chief Operating Officer at Freisenbruch. If you would like any further details, please contact her at cseely@fmgroup.bm or call +1 441 297 8686.

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