Peace of Mind - Caring for children with special needs doesn’t end when they reach adulthood.

Caralee Adams | Photographs by Jonathan Chapman

When Karl Arezzini sings or plays cello at St. John’s Lutheran Church in Stamford, Connecticut, the congregation sees a talented, 17-year-old musician. They don’t see a young adult struggling with autism. Over the years, as Karl’s mother, Lynn, watched people enjoy his performances and saw his smile in return, she got a glimpse of Karl’s future: "I knew then that music was the way into the world for him—and the way for the world to see him."

Karl was diagnosed at age 3 with autism, a brain disorder that affects his communication, learning and social skills. The cost of his medication, therapy, education and special camps adds up, and managing it all is like a full-time job.

"Unfortunately, we both have full-time jobs," says Lynn, who, like her husband, David, is a music school teacher. While the Arezzinis don’t know what the future holds for Karl, they are taking the necessary steps to prepare for the long term.

"Until they find a cure, he will not be able to take care of himself. He is very healthy and will live a long life," Lynn says. "We don’t want him stuck in a state institution without a quality of life. God gave him this incredible gift. We want church and music to be a part of his healthy, happy, productive life."

To make sure their wishes will be fulfilled, the Arezzinis recently worked with both Alice Reitz, a Thrivent Financial for Lutherans representative who has extensive experience developing financial strategies for families, and the non-profit disability organization PLAN of Connecticut to put together a financial and legal plan to care for Karl throughout his life. "This is a very long process for most families," says Reitz. It can take enormous emotional energy to gather the necessary information, ask someone to be a guardian or trustee, consider what the future may hold for a loved one with special needs and determine the impact inheritance may have on future benefits.

The Arezzinis are not alone in dealing with these challenges. According to the U.S. Census 2006 American Community Survey, more than 2.8 million children aged 5-15 have a disability of some kind. With ongoing medical costs and special care needs that are likely to stretch well into adulthood for these children, planning can be overwhelming. Tapping into the expertise of financial advisors, attorneys and disability groups can help parents sift through the decisions they need to make when crafting a plan for the future.

"Alice became that lighthouse on the hill," says Brenda Sullivan, whose daughter, Katie, has severe cerebral palsy and requires round-the-clock medical care. Reitz helped Sullivan and her husband, Paul, set up disability income insurance and long-term care insurance, beef up their retirement vehicles and secure enough life insurance to protect Katie’s future financial needs. Reitz also reviewed a special needs trust from the Sullivans’ attorney.

"The special needs plan shouldn’t be done in isolation," says Reitz. "It has to be part of a cohesive financial strategy that is affordable, flexible and works for the long term."

Every family’s needs, goals and circumstances can change over time. Because you’re not only preparing for the child’s future but also your own, Reitz recommends addressing significant risk issues first, then retirement and estate planning so you will have the money you need to live on and retire—because in all likelihood, you may still be supporting your child with special needs well into your retirement. Then, turn your attention to details such as specialized trusts and life insurance vehicles as you create and put in motion a long-term funding and care strategy that suits your family’s needs. As your child grows and changes, so should your plan.

When Robert Baker, a Thrivent Financial representative in Nampa, Idaho, and his wife, Jeannie, found out their fourth child had Down syndrome, they knew they had to adjust their thinking about their future. As it turns out, Isaac, now 10, is an energetic, high-functioning child who actually may work and live independently.

"When you have a disabled child from birth, your mindset gets established. If the disability is severe and the child will never be employable, then you go on one track," says Baker. "When they are marginally employable, you want to be as interactive as you can with speech and physical therapy, and really concentrate on school and life skills."

Similarly, you need to approach a long-term care strategy a little differently for a child who may be fairly independent. Baker, for instance, not only is setting up a special needs trust to supplement the state and federal entitlement program, but also is exploring the impact of Isaac building his own Social Security benefits through work and looking into how to secure medical insurance for him.

Sorting through these kinds of issues and finalizing a plan can be challenging and time consuming, especially as a child grows and things change over time. Still, the comfort a long-term care strategy brings is priceless. For Brenda Sullivan, who used to worry about what would happen when she could no longer care for Katie, the plan she now has in place has brought her "incredible peace of mind."

Caralee Adams is a freelance writer in Bethesda, Maryland, who covers personal finance, education and parenting topics.

Resources

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Be Prepared  |  6 Ways to Help | Special Needs Resources

Children with Special Needs

Nearly everyone’s life has been touched by a person with a disability-if not in your family, perhaps in your congregation or community. Among the 41 million Americans who have some level of disability, 2.8 million are children 5-15 years old.* Some disabilities are mild and can be managed. Others are more severe and require more substantial care.

SOURCE: U.S. Census 2006 American Community Survey. *Mental disability is the most common disability category among these children, followed by sensory (blindness, deafness or a severe vision or hearing impairment), physical and self-care disabilities (difficulty with dressing, bathing and mobility).