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Who will take care of my child with special needs after I am gone?

For many parents of children with special needs there is an inherent fear of death. While most people are afraid of dying, for the parents of a child with special needs this fear goes beyond the normal dread and extends to constant worry about who will care for their child in the future.

The questions that run through these parents’ minds are endless. What will happen to their child with special needs once they are gone? Who will be willing to act as guardian? Should the parents expect their non-disabled children to care for their sibling? Who will pay for their child’s care?

In the past these concerns were not as prevalent because many individuals with special needs did not outlive their parents. As early intervention and health care improved, the longevity and lifespan of individuals with special needs has increased tremendously. Today many individuals with special needs are outliving their parents.

To allay the fear and constant concern it is important for parents of children with special needs to have a plan for the future. Creating this plan can prove to be a challenging endeavor because of the various financial and emotional aspects.

Although federal and state programs will usually provide for the basic care of an individual with special needs, these programs generally do not provide for enhancements, such as camps, private health insurance, therapeutic recreation, and visits with relatives. There are also strict guidelines that must be followed in order to qualify for these programs.

Despite the strict guidelines and exacting procedures parents of children with disabilities must follow to qualify for government benefits, parents can establish a special-needs trust to create a fund that can pay for an enhanced life while leaving basic governmental benefits intact. These special-needs trusts are just a piece of the estate planning puzzle. There are many tools and strategies that can be used to ensure a child with special needs will continue to receive the best care possible.

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