While a special needs trust and benefits planning can provide resources and public benefits for a child with a disability, these resources alone are insufficient to care for the child apart from detailed instructions.  A letter of intent is a non-legally binding document that provides instructions to future caregivers on how to care for a child with a disability.  A letter of intent, which can take any form,. , provides information on the care for the child with a disability.  This information is particularly critical for caring for children who are unable to communicate their desires.

It is suggested that the letter of intent should contain both the likes and dislikes of the child.  Examples of such are “My child loves to watch a certain Disney movie at exactly 2PM everyday”, and “We have found he really hates clowns, please avoid taking him to birthday parties that have clowns.”  These simple instructions provide for s smooth transition.

It is recommended that the following information is included in a letter of intent:

  • Names, addresses and phone numbers of people who should be contacted in the event of your incapacity or death.
  • Your child’s family history, as well as names and contact information for family members who have a good relationship with your child.
  • The names, addresses and phone numbers of close friends who have a good relationship with your child.
  • Facts relating to your child’s medical condition and names, addresses and phone numbers of those actively involved in your child’s medical care.
  • Your child’s interests, personality traits, likes and dislikes, including the types of social activities your child enjoys.
  • Your child’s day to day routines such as mealtimes, bedtimes, and extracurricular activities.
  • Information about your child’s education and your hopes and aspirations for future education.
  • Information about any paid or volunteer positions that your child had held and/or what types of jobs he or she might enjoy.
  • The location of medical records or other important documents
  • Your child’s religious beliefs, including where he or she attends religious services, the names of ministers who are familiar with your child and your hopes for his or her religious upbringing.
  • The environment in which you would want your child to live as an adult, such with relatives or in a group home.
  • Any other information you believe is relevant to your child’s care.