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Originally published Sunday, April 27, 2008 at 12:00 AM

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Providing for future poses extra challenges

Parents of children with developmental disabilities often must jump extra hurdles in planning for their children's future.

Seattle Times staff reporter

Drawing up a will and divvying up assets are the usual ways parents plan for their children's futures. But parents of children with developmental disabilities often must go through a more elaborate process.

Unlike parents of typical children, parents of adults with disabilities feel added pressure to make sure that someone is watching over their loved one after they're gone. That can be an informal process, such as arranging with a sibling to take over. Or it can be more formal: appointing a legal guardian, which generally involves hiring a lawyer and going to court.

Leaving assets to people with disabilities can also be tricky. If a person with disabilities has more than $2,000 in assets, he or she could be disqualified from receiving key government benefits. Until the family inheritance is spent down, that person would find himself adrift, without access to many government services.

To get around that, families can form what are known as special-needs trusts, another process that generally requires a lawyer. The beneficiary can access money in the trust for things government programs don't cover — say, a plane trip to see a sibling, or new clothes — and still retain government benefits. Setting up and maintaining a trust, however, can cost thousands of dollars, depending on its size.

There are a number of pooled special-needs trusts, which combine the assets of numerous beneficiaries as a way to save on costs. The Arc of Washington has one such trust, known as the Life Opportunities Trust: www.arcwa.org.

Some parents want to go a step further in planning for their own deaths by ensuring their loved one has a social network that involves more than just caseworkers and the like.

"Some people might not have a single unpaid friend," said Jean Bateman, board president of LifeSPAN, a local organization that helps families set up circles of support around the person with disabilities.

Bateman said families should begin the process when their loved one is still young, in order to see their plan in action. LifeSPAN can help ensure the plan continues after their death: www.lifespan-wa.org.

Copyright © 2008 The Seattle Times Company

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