Financial planning for special needs kids

Worried parents
Ken Wirtz, a MetDESK agent who has worked with the Krieschers in Wisconsin, said that in addition to financial guidance, he keeps up with community resources that can be of help to parents.

"Most of the parents are more worried about the children than themselves ... so we need to assess the overall situation and determine how we can support the parents so they can physically and financially take care of their children, even after they're gone," he said.

Michael Byrne, a financial planner with Lincoln Financial Advisors in Cherry Hill, N.J., said he got involved in assisting families with special needs "after watching my mother, who is 74 now, working to keep my brothers qualified for benefits as the rules kept changing." Two of his brothers, he said, suffered brain damage when a genetic disorder known as PKU, or phenylketonuria, was not diagnosed at birth.

Byrne also has a 14-year-old daughter, Kelsey, who was born with Williams syndrome, a form of mental retardation.

He said that the prayer of parents with a special needs child is simple: "We wish for the child a long and happy life — and wish that we can live one day longer."

But that generally doesn't happen, so parents often need to put wills and special trusts in place to ensure that their kids are cared for.

Special needs trust
One of the best things a family can do is to set up a special needs trust. Also know as supplemental needs trusts, they allow parents to leave assets for the disabled child — for transportation, recreation, vacations, a personal-care attendant — without disrupting the government benefits the child may need to survive, Byrne said.

Families also need to consider the financial demands of their non-disabled children, putting college savings plans and insurance coverage in place for them.

Richard and Christine Harrison of Mansfield, Mass., have worked hard to plan for the needs of their two daughters, Julia, who is 5, and Katie, who was born with Down syndrome three years ago.

Katie requires medication for a thyroid disorder, and the family has invested in speech and physical therapy for her, including sign language classes that allow her to communicate more easily.

The Harrisons recently purchased an insurance policy; if something happens to them, the money will go to a special needs trust for Katie.

"That life insurance policy is a way of saving for Katie," Christine Harrison said. "At the same time, we've saving for Julia's future by saving for college.

"In a way it's the same goals, but different plans of attack."

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