Many families focus on Mother's Day and Father's Day during this season of the year. But for many moms and dads, it is a bittersweet recognition. They are parents of children with disabilities — children who will never be fully capable of caring for themselves, living independently, earning a living and managing their finances.
For them, the task of parenting has a never-ending timeline. And what they worry about most is what will happen when they, in all likelihood, pass on ahead of their children.
How do you create a lifetime plan for someone who will always need care? It's not only a question of money, but a question of responsibility. Fortunately, there is a financial planner who has dedicated her life to creating a planning system for families of children with disabilities.
Mary Anne Ehlert's interest in planning for these children started with her own sister, whose disabilities as result of cerebral palsy affected the entire family. The story is detailed in Ehlert's book, "The Gift I Was Given."
The need to confront the issues of financing and planning for her sister led Ehlert to create a simple workbook designed to chronicle life histories and catalog important information. It has since grown into a broad-based planning and advocacy program for the disabled.
You can find it all at www.ProtectedTomorrows.com. The website describes it best: "Protected Tomorrows Inc. is an advocacy firm that enhances the lives of people with special needs through a comprehensive life planning process.
We create Future Care Plans, which address the needs of the individual with developmental disabilities, mental illness, physical disabilities or cognitive and neurological diseases in the following areas: education, residential, legal, financial, health care, government benefits and employment."
There are several ways to access all the assistance and information. Over the years, I've watched — and written about — Mary Anne as she works with families to help them find resources and work with attorneys to create special needs trusts to give their children the best opportunities.
She also has a staff of planners who develop and coordinate care plans. There are even group sessions, where as many as 20 families learn the do's and don'ts of planning for their children.
The real genius, though, is Mary Anne's recognition that many families can't afford this kind of intensive planning. So she created a computerized program that costs $129 to get started, plus an annual fee of $29.
It is an online program that helps families think through all the decisions that must be made on behalf of their children.
— Who will be the future caregivers and trustees?
— How can money be set aside for care without affecting federal benefit programs?
— What happens when your child reaches age 18, or 21, and "ages out" of many benefits for children, such as participation in the special education system?
— What plan is in place for when one or both parents die?
One of the critical elements of the process is the "My Special Life" workbook. Children who are able to understand the concept are encouraged to get involved — talking about their lives, posting pictures of themselves — all in a process to build self-esteem.
Says Ehlert: "It's as if you were creating a retirement plan for a child. It's a lifetime process that will need to be revised and updated, so having it well organized is important."
Sadly, despite modern medicine and genetic testing, there is a growing need for this kind of planning. According to the latest report (March 29, 2012) from the Centers for Disease Control, one in 88 children is being diagnosed with autism — up from one in 110 children in 2006. Among boys, the rate of autism disorders is one in 54, almost five times the rate for girls.
And those numbers create greater need for counseling and planning services. Ehlert is now working with corporations, presenting seminars as part of an employee benefit program.
She estimates that in any employee group, it's likely that one in 20 has a family member who needs to deal with this issue.
Employees who have access to her planning system are less likely to be distracted — or leave the workforce entirely to care for a family member. And Ehlert frequently offers public seminars, open to all.
For more information go to www.ProtectedTomorrows.com or call 847-522-8086.
I leave you with these words from the ProtectedTomorrows.com website:
We believe that every human being has a right to live life to his or her fullest potential. ... Provide a person with the means to live a fuller life and you give more meaning to yours. ... If only the strong were to survive, wouldn't all of our lives be greatly diminished?
Something to think about — and that's The Savage Truth.
Terry Savage is a registered investment adviser and is on the board of the Chicago Mercantile Exchange. She appears weekly on WMAQ-Channel 5's 4:30 p.m. newscast, and can be reached at www.terrysavage.com. She is the author of the new book, "The New Savage Number: How Much Money Do You Really Need to Retire?" To find out more about Terry Savage and read her past columns, visit the Creators Syndicate Web page at www.creators.com.
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