Planning for a disabled child’s adult life


Life planning is an important task for parents of disabled children

by Duane Ruth-Heffelbower

What will happen to our child after we’re gone? This question plagues nearly every parent with an adult child who has a significant disability that prevents him or her from being financially self-supporting and/or living independently without supports.

For such situations, life planning is particularly important. Life planning means putting plans in place to provide for your dependents, including your adult child with a long-term disabling condition. As the parent of a dependent adult, it is natural that you are concerned about your child’s long-term well-being and future financial and emotional security.

Planning for the future of your dependent adult will involve interacting with the legal system to write a will, create a trust and to create a guardianship or nominate a conservator. Planning will also entail setting up informal friend and advocacy relationships through your family, friends and congregation.

Because unique considerations are involved, it is especially important to include anyone who is likely to carry a long-term responsibility for the person with the disability. Think creatively about who might welcome the invitation to be a long-term friend and support of your family member.

Life planning does well to include the following people:

The dependent person. Though it may not be appropriate in every situation, it is generally best to include the dependent person to the extent he or she is able to be involved. If the dependent person has a guardian or conservator, that person will need to be included as well.

Siblings. Estate and life planning should be a family process. This helps facilitate the open expression of opinions and feelings about future expectations. Sibling participation in planning also helps avoid surprises for the brothers and sisters concerning plans for their dependent sibling after the death of their parents. Thoughtful and sensitive planning by parents will not only discourage disputes after their death, but in many cases, it might become a final and enduring expression of their love. In spite of—and perhaps because of—our reluctance to talk about death, life planning is an important activity for the whole family.

Extended family. Sometimes the emotional or geographical closeness of extended family members (uncles, aunts, cousins, etc.) makes it important to include them in the life planning process. In some cases, they may carry specific roles in the future as they help to maintain and care for the dependent family member.

Friends. In our increasingly mobile society, many rely on friends for roles that family played in earlier generations. Consider who among your circle of friends and acquaintances has taken a special interest in your dependent family member. Recognize that the invitation to be a long-term friend and support to your family member is an opportunity for connection that will benefit both parties in the friendship.

Your church. If members of your church play a significant role in the life of your dependent adult, it would be beneficial to include them in the life planning process. The church has a responsibility to ensure that the dependent person has a lifetime of emotional and spiritual support and care. This is part of our mutual accountability as members of the body of Christ.

From After We’re Gone by Duane Ruth-Heffelbower. Copyright © 2011 by MennoMedia, Harrisonburg, VA. Used by permission. Readers looking for additional resources are encouraged to contact Anabaptist Disabilities Network (ADNet).

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