Special Needs Planning – Beyond the Money

I was grateful to have participated this week in the Transition Fair held in Preston, Idaho for parents of individuals with disabilities.  What a great event this has become.  When planning for families with a special needs child, rightfully, a significant amount of time is spent in making sure that estate planning decisions do not result in the child losing important benefits.  However, today I thought I would look beyond the money to some of the non-financial planning that can be accomplished.I recommend that my clients with a special needs child create a letter or memorandum communicates their preferences regarding the care of their son or daughter.  The letter is intended to give a caregiver or trustee of a special needs trust insight and information regarding services, supports and other personal matters affecting the child.Parents, brothers, sisters, other family members, and, where possible, the child should contribute to the letter.  The letter could include some or all of the following information:

  1. Vital statistics such as name, date of birth, place of birth and social security number.

  2. Information on government benefits which your child receives or may be eligible to receive.

  3. Preferences for future living arrangements.

  4. Regular routines in your child’s schedule (e.g., daily schedule of getting ready for school, weekly appointments).

  5. Programs and services your child is involved in or receives.

  6. Personal preferences of your child, such as clothes, food, hobbies, recreation, etc.

  7. Personal habits that it would be important for someone else to know about.

  8. Identify all friends and relatives, their addresses, and how often your child likes to visit these people.

  9. Describe any religious preferences and how often your child participates in religious activities.

  10. Describe your child’s level of independence for getting around the community, handling money, communicating, etc.

An African proverb states: "When an old man dies, a library burns to the ground."  As the parent of a special needs child, you carry with you an amazing amount of institutional knowledge about your child.  In the event of your untimely death or disability, the failure to preserve this knowledge is like a library burning.  As part of planning for your special needs child, make sure you look beyond the money and preserve the information that will assist making these changes as seamless as possible.