Parents of Disabled Children Need to Make a Financial Plan for Their Future

Updated on October 12, 2022

Imagine having to scrape together enough money to put your child through Harvard, every year for the rest of his or her life. 

That’s the daunting task faced by the parents of a child with a disability, who must be ready to fund upwards of  $50,000 a year for future care. And that’s why Mary Anne Ehlert—a financial planner dedicated to helping such families—has a phone that rarely stops ringing. 

“Parents of a child with a disability are haunted by one question,” says Ehlert, president of Protected Tomorrows and a partner of Forum Financial in Lincolnshire, Illinois: “Who will take care of my child when I’m gone?” 

Many parents of children with disabilities spend most of their time and resources taking care of the here and now, but don’t know where to turn for their unique financial planning requirements. 

For such parents, the task of planning for their child’s future may seem overwhelming. How does one qualify for government benefits? Evaluate the right school systems? Find the right residential program? Create an appropriate financial plan? Structure an estate plan? Ehlert and her staff—many who have family members with a disability—guide parents through this stressful, complex and heart-wrenching process. 

Most financial professionals are known for their analytical skills rather than their compassion. But Ehlert brings something more to the table: a first-hand understanding of the emotional and financial complexities of living with a loved one with a disability. 

“My sister Marcia, who was born with cerebral palsy, changed my life forever,” Ehlert says. “She helped me discover that I can make a difference in the lives of others. Families feel secure in planning with someone who knows what they’re going through.” 

One of six siblings, Ehlert was particularly close to Marcia. A successful banking executive, she saw first-hand the difficulties her parents had in making sure Marcia would be cared for when they could no longer do so. 

Meanwhile, Ehlert was becoming disillusioned with corporate life. The last straw: having to lay off hundreds of employees. In 1990, she began studying for her Certified Financial Planner (CFP) designation and started a business geared to special needs families.  She once thought there wouldn’t be enough families who needed her services. Thirty-two years later, she has seven employees, is a partner of a national financial firm and has more work than she could have imagined. Although Marcia passed away more than 25 years ago, her legacy lives on.

“There’s so much for families to learn,” Ehlert says. “Often, clients proudly tell us that they’re setting money aside in their child’s name, sometimes working two jobs. 

“Unfortunately, what they’re doing will disqualify their child for government benefits like Medicaid and Social Security.” 

Families are often initially horrified when Ehlert recommends that they do not leave money directly to their child—until she explains it’s an act of love. In order to qualify for Medicaid and Social Security, a child over 18 may not have more than $2,000 in his or her name. 

“Parents can still save those dollars, but they need to do it the right way, by establishing both an ABLE Account and a Special Needs Trust. Even with government benefits, you want to leave money for haircuts, movie tickets and extras,” Ehlert says. 

To guide families through such legal, emotional and financial intricacies, Ehlert has created an eight-step programThe Journey to Protected TomorrowsTM. Her team of social workers, accountants, financial advisors, insurance experts and allied attorneys takes families through the entire planning process, from identifying needs to applying for benefits to creating a viable funded financial and estate plan. 

She has even created a unique online workbook, My Special Life™, which allows parents to document their child’s individual preferences and lifestyle for future caregivers. She now offers a monthly complimentary online Protected Tomorrows Parent University to help families learn one step at a time, where not only her team but guest speakers bring their special brand of knowledge and compassion to families in the comfort of their homes. 

What advice does she have for parents of a special needs child? “Start early. The toughest time is when a child ages out of the school system. There’s no communication between schools and government agencies—all of a sudden, it’s up to the parent.” 

To meet the growing demand of special-needs families, Ehlert is looking for advisors who want to also make a difference in their communities. She has developed a training program for advisors who would like to join her firm and help make a bigger difference.  

Over the years, Ehlert found time to serve on a number of volunteer boards, including those of the SEDOL Foundation, National Disability Institute, Clearbrook Center[MA1] , Special Olympics Illinois, CdLS Foundation, Gateway to Learning, St. Coletta’s of Illinois, Tails for Life and Integrative Touch. 

In addition to special needs families, her firm provides financial planning for children with aging parents, the widowed and the divorced. In short, all her clients need special guidance—and a personal touch. “What makes us different,” Ehlert says, “Is that we work with our hearts as well as our heads.”

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