Once a trust is created, one of the biggest challenges is determining "how much financial support the child [will] need for a lifetime," said Hal Wright, a certified financial planner with Colorado Financial Partners.
"It's very difficult to estimate, but that is crucial because the estate plan has a hollow center if you don't know what the needs are," said Wright, who consults with families of special needs children and has an adult daughter with Down Syndrome himself. "Families always want a number, but the problem is, it's so unique to each family."
Wright has seen special needs trusts range in value from $250,000 to $1 million. Some factors that influence the value include the expected lifespan of the trust grantor and the beneficiary, the availability and adequacy of government assistance, the level of professional services needed and whether the trust will go toward buying a residence.
Funding the trust can be even more complicated if there aren't enough resources to satisfy the financial needs of other children in the family.
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Another important decision to be made is designating the right people to manage the trust and make decisions about the beneficiary's care.
While most families opt for a close relative, often a sibling, to act as guardian, experts suggest choosing someone at arm's length to act as trustee. This can be a family friend, non-immediate relative or a corporate trustee, such as a bank. Wright said this often serves the child's best interests more efficiently and effectively.