When a Special Needs Trust is established for a loved one, a separate “letter of intent” or “letter of instruction” is a recommended document that accompanies the Trust.
A Letter of Intent communicates information and knowledge that only parents or caregivers may know to ensure that (1) the Trustee of the Special Needs Trust knows the individual’s needs and how to properly provide for them, and (2) that the future Caregiver knows the individual’s functional abilities, routines, interests, and particular likes and dislikes and how to properly care for the individual.
The Letter of Intent serves as a useful guide to the Trustee in assuming the responsibility of managing and utilizing the trust assets for the individual’s needs. In the letter, parents can inform the Trustee as to the typical expenditures for the health, maintenance, education, and welfare of the individual.
Whether the Trustee also serves as the future caregiver of the individual, or the role of Caregiver is filled by someone else, the Letter of Intent can educate the Caregiver on how best to meet the individual’s needs after the parents or other caregiver is no longer able to do so.
For parents of younger children, the letter can set forth the parents’ future hopes and desires for the child, activities that the parents hope the child can still partake in, and can communicate the daily routine or tricks of caring for the child. Perhaps your child has a particular morning routine that is important to follow, or has a fear of animals, or has other special needs that are important for a future Caregiver to know.
The Letter of Intent can also provide the Trustee and/or Caregiver with access to helpful resources, such as the names of doctors or other service providers, friends of the family, or friendly contacts at state agencies that are familiar with your child’s needs.
By compiling as much information as possible, parents and current caregivers are equipping future Caregivers with the knowledge and insight needed to maximize the care provided and tailor the care to the individual’s specific needs, preferences, and daily living routine.
Some issues to consider addressing in the Letter of Intent are:
- Family history: where and when parents were born, raised, and married as well as where and when the child was born and raised. Family members, especially siblings and other close relatives (aunts, uncles, grandparents, and cousins) should be listed with current contact information for all.
- A typical day in the life of your child: morning routines, personal hygiene routines, schedules, warning signs, exercise routines, and evening routines.
- Child’s Favorites: including his or her favorite foods, music, books, television shows.
- Child’s Dislikes: including foods, medicines, habits, and interactions.
- Medical information, including current doctors, therapists, clinics, hospitals, current medications and therapies. Every medication listed should be accompanied with an explanation as to how the medications are given and for what purpose. Parents should also describe medications that have not worked in the past and any known allergies.
- Resources: local programs or people – public agencies, churches, individuals and private organizations- that provide assistance to persons with disabilities.
- Residential care needs: including past and present accommodations and expected future needs.
- Educational information: past academic records, current enrollment, specialty teachers, future educational goals, special interests and talents, extra-curricular activities, as well as types of educational emphasis, for example, vocational, academic or communication.
- Employment guidance: including past work history, the work your child may enjoy, sheltered workshops, activity centers and companies that provide employment in the community which may be of interest to your child.
- Social, behavioral and personal relationships: friends and family members, teachers, care providers, or other community members that are important to your family and child.
- Social and recreational activities: including sports, dance, music or movies. Parents should address whether or not they want their child to have his or her own spending money.
Parents can also include their final expression of love to their children and special memories they would like any future Caregiver to relay to the child. The letter of intent should be reviewed periodically and should be updated to reflect any significant changes in the child’s life.