- The Washington Times - Tuesday, March 27, 2001

Many parents of a child with special needs will tell you they live in the present. Their daily lives are filled with all the chaos of any household containing children times 20.

But whether their child is 3 or 30, it is imperative that parents take time out to plan for their and their child's future. Such planning is not just for lifetime care, it is for quality of life, says Nadine Vogel, founder of MetDESK, MetLife's Division of Estate Planning for Special Kids.

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Ms. Vogel, who lives in Short Hills, N.J., is the mother of two young children with special needs, "so the information I'm giving you is information I've lived personally," she says. "I used to spend 18 hours a day at the hospital and then think, 'I'm going to drive home and get hit by a car now because I'm so tired, and then who will take care of my child?' " That thought, she says, compelled her to begin an intensive information-gathering effort about estate planning.

While her own preparations offered her some peace of mind and became the backbone of the MetDESK services, Ms. Vogel concedes that estate planning can evoke extremely intense emotions such as guilt in parents of special-needs children.

"It's very hard to look into the future," she says. "Planning forces you to think of what your child will be like 10 or 20 years ahead of time." Considering the complexities of a special-needs child, "that can be very daunting," she adds.

Ms. Vogel names three elements of estate planning on which she would advise parents to begin. "First, you must have a will," she says. "I don't care if someone writes it on a napkin and signs it. The worst decision you can make is no decision at all.

"Next, go get some insurance some basic insurance so in the event of your death there are some funds there to provide for the child's care. Third, I would recommend you get something started on your Letter of Intent." That, she explains, is a document of details about the child's day-to-day needs, abilities, diets, activities and medical care.

Ms. Vogel advises that parents work with lawyers or planners who are experts in the area of planning for children with special needs.

"If the person is not an expert, you can spend money, time and emotional energy and then you or your heirs find out later that it was not the most appropriate," she says. "If the Social Security or medical or educational advocacy laws change a year later, will that person know about it and be able to notify you?"

Barton Y. Stevens runs Life Planning Services, a company for future planning for people with disabilities, from Phoenix. He criss-crosses the country throughout the year speaking on the topic at workshops for myriad special-needs-related organizations. He says he understands why parents might put estate planning on the back burner.

"When people become the parents of a child with special needs, they are busy 26 hours a day, eight days a week," he says.

Once parents decide to get started, though, they can create a comprehensive plan that addresses the lifestyles and care needs of their children. Mr. Stevens suggests the following steps:

1. Prepare a life plan for your child. Decide on residential needs, employment, education, social activities, medical and dental care, religion and final arrangements.

2. Write informational and instructional directives. Put your desires into a written document and include information about care providers and assistants, functional abilities, activities enjoyed, daily living skills and rights and values.

3. Decide on a type of supervision. Guardianship and conservatorship are legal appointments requiring court-ordered mandates. Guardians and conservators also are responsible for the care and decisions made on behalf of people who are unable to care for themselves. Many parents do not realize that when their children reach age 18, adults no longer may have legal authority. Choose conservators/ guardians for today and tomorrow.

4. Determine the cost. List current and monthly expenses. Decide on a reasonable return on your investments and calculate what will be needed to provide enough funds to support your child's lifestyle.

5. Find resources. Possibilities include government benefits, family assistance, inheritances, savings, life insurance and investments.

6. Prepare legal documents. Choose a qualified lawyer to assist in preparing wills, trusts, power of attorney, guardianship and living wills.

7. Consider a special-needs trust. This document holds assets for the benefit of people with disabilities and uses the income to provide for their supplemental needs. If the trust is drafted properly, assets are not considered income, so people do not jeopardize their Supplemental Security Income or Medicaid. They also don't have to repay Medicaid for services received.

9. Hold a meeting. Give copies of relevant documents and instructions to family members and caregivers. Review everyone's responsibilities.

10. Review your plan. At least once a year, review and update the plan. Modify legal documents as necessary.

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