Helping the Families of Special Needs Children



Photo by Daniel Smyth

When Matt Johnson, a financial advisor at Northwestern Mutual, gives his annual speech at the Empowering Families Symposium, he talks “at a 50,000-foot level” about financial planning for parents who have children with special needs. But that doesn’t mean Johnson is unfamiliar with the granular challenges those parents face. Throughout his personal and professional life, Johnson has faced them, too.

Johnson became involved with the symposium in 2008. He had worked with medical residents and physicians on their financial planning for several years at Northwestern Mutual when he met a client who happened to have a child with autism. The client was partnering with Thomas Knestrict at Xavier University and Cincinnati Children’s Hospital Medical Center to present a conference for families with special needs children.

“Though I had done work for a group of clients with kids with special needs, it wasn’t the focus of my work,” Johnson says. “But he (the client) said these families have a huge need for financial planning and he asked me to be a sponsor at the conference.”

Johnson jumped at the chance and began speaking at the annual event, which eventually became the Empowering Families Symposium. Johnson has found that his experience with children with special needs is a valuable resource to the families he encounters there which includes his two special-needs nieces. “I’m not completely removed from the adventures, the joys, the difficulties of raising a child with special needs.”

The challenges facing these families are enormous. “I ask these parents to think about the future and they have a hard time thinking past tomorrow,” Johnson says. “For them it is difficult to wrap their brains around, and it’s scary because every parent’s worst nightmare is what would happen to their children if they weren’t around anymore. These are the conversations I have with folks. I take them through the process, what the first step is. It doesn’t have to be intimidating.”

There are, says Johnson, families that are not aware of the depth and breadth of the resources that can help them. “There are so many financial resources out there, but honestly the parents are so consumed with the daily responsibilities of caring for their children that it’s a difficult task to take a step off the treadmill of life to investigate and understand all of what is out there.” Thus the symposium, which he calls “one of the best conferences for families who have children with special needs in the country.”

Johnson advises the families on what government benefits are available. Supplemental Security Income (SSI), for example, provides families basic needs, including clothing, food, housing and medication. “But the individual has to maintain a low level of asset ownership and a low level of income generation to receive the benefits, so there are certain thresholds,” Johnson says. “What many parents don’t realize is if, for example, they have a life insurance policy that is passed on to their child when they pass away, that can compromise the benefits. So generally they need to manage their financial affairs so money passed on to their child doesn’t affect his or her benefits.”

Johnson also counsels his clients to create a letter of intent that captures anything and everything that only a parent would know about their child. “So, if the child has communication issues, only a parent would really know things like their favorite foods, what helps them go to sleep at night, their favorite movies, any medication details and little tricks that would help someone care for the child.”

“I ask these parents to think about the future, and they have a hard time thinking past tomorrow. For them it is difficult to wrap their brains around, and it’s scary because every parent’s worst nightmare is what would happen to their children if they weren’t around anymore. These are the conversations I have with folks. I take them through the process, what the first step is. It doesn’t have to be intimidating.” – Matt Johnson

When asked whether his work is especially gratifying, Johnson demurs. This is what he would be doing regardless of whether it was gratifying or not, simply because it needs to be done. That’s the kind of person he is. But he does offer that his clients are noticeably different from those of other financial advisors.

“In the special needs marketplace, there is a heightened level of overall emotion, a whole variety of emotions, including joy and excitement and frustration and anger,” Johnson says. “So when a parent in this situation achieves a victory in the financial planning process, the emotional response is broadly more significant. They appreciate it a lot more.”

He tells this story about a conversation he had with a parent at this year’s symposium: “She was about to inherit a large amount of money and we talked about a few small things she could do to help ensure this inheritance wouldn’t compromise the health of her child. She walked away with tears in her eyes from the value gleaned in that short conversation. Even small victories like that are hugely significant for parents in these situations.” 

Northwestern Mutual is located at 3805 Edwards Road, Cincinnati, OH 45209. You can reach them at 513.366.3685 or visit their website at cincinnati.nm.com