I attended the 2013 Special Needs Trusts-National Conference last week. The conference focused on how to customize and manage Special Needs Trusts, also known as Supplemental Needs Trusts. One of the focuses was on how important it is to customize the Special Needs Trust to the beneficiary’s situation.

Several of the sessions were on the importance of the trustee knowing how to protect government benefits. One session discussed the responsibility of the trustee evaluating the needs to the beneficiary. One of the recommendations was to make sure to have a comprehensive life plan. This will allow the trustee to maximize the outside resources including government benefits. It will also allow the trustee to make sure that the money lasts for the child’s lifetime and provides for the medical needs.

A letter of intent or letter of instruction is an important piece of any estate plan for families who have a child with a disability. These letters let the trustee know your child’s doctors, medical needs, routines, interests, preferences and abilities. Also, these letters help the trustee find resources in the community.  This knowledge will help improve your child’s quality of life and help them enjoy the maximum amount of independence. This is a way to help your trustee keep the child’s routine intact. These letters need to be updated when the child’s routine is changed.

The letter should contain the following information:

• money;
• a typical day in the life of your child, including his or her favorite foods, music, books, television shows and routines;
• medical information, including current doctors, therapists, clinics, hospitals, current medications and therapies. The parents should explain how the medications are given and for what purpose and describe medications that have not worked in the past; and
• parents’ final expression of love, hope and desires for their child.