Wednesday, November 12, 2008

Planning for Special Needs Children

Forty percent of children with Down syndrome have congenital heart defects. They have higher incidence of respiratory, vision and hearing problems, childhood leukemia, and thyroid conditions. All people with Down syndrome have developmental delays and intellectual impairment. The range can be from very mild to very severe.

The Washington Post ran a story I picked up in the Kansas City Star. Today's twenty-somethings with Down syndrome will be the first generation that will outlive their parents. The life expectancy of Down syndrome people has gone from 25 to 50 years. In 2006, 61% of people with an intellectual disability were living with their families, and 700,000 of them were living with parents or family members older than 60.

Government payments can cover much of a disabled person's expenses if their personal assets don't exceed a certain amount(not including a home, a vehicle and basic personal items). In 1993, Congress permitted special-needs individuals under age 65 to have trusts funded with their own money -- such as assets from a legal settlement or an inheritance -- and still have access to government benefits. More common, however, are so-called third-party trusts, in which parents provide funding for trusts that benefit their children.

Funds transferred to a trust are not considered to be assets of the special-needs individual, if there's an independent trustee who controls the money.

There are lots of problems for people with disabilities and their families to contend with from achieving independent living, estate planning, supervisory programs, to guardianships.

Lots of resources at National Down Syndrome Society.

Plan ahead for your child by writing a special needs trust. Find out about special needs trusts from a competent estate planning attorney in your state. It's never too early to plan.

If you are in Utah can find information at

Other Utah resources on our web site at

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