The letter of intent (LOI), while not a legal document, is key to your special needs planning. There’s a tremendous amount of information about a child that only parents really know and understand, and the LOI is intended to share as much of that detail as possible.  It’s a blueprint for guardians, trustees and service providers, summarizing information regarding family history, your child’s needs, habits and preferences, and your hopes for the future. It’s meant to ease the disruption that will inevitably occur when you are no longer primary caregiver.

Review the LOI annually and tell future caregivers how to locate it. It should contain, at a minimum:

• Overview –A summary of the child’s life to date and your aspirations for the future
• Family history– Information and “favorite memories” relating to parents, grandparents, siblings and friends, as well as the child
• Medical care– Detailed description of disabilities, with medical history, medications and current healthcare providers
• Benefits– List of programs such as Medicaid and Supplemental Security Income (SSI), in which the child is enrolled, agency contacts, case numbers, documentation requirements
• Daily routines – Include activities he loves or hates, and chores he typically performs
• Diet – Likes and dislikes, allergies, interactions with medication
• Behavior management –Programs in place, level of success, unsuccessful past efforts
• Residential – Current living arrangements and changes which may be necessary in your absence
• Education– Programs to date and preferences for the future
• Social life – Activities he enjoys, including vacations
• Career– Types of work he enjoys/might enjoy and supports required
• Religion-Role this plays in child’s life

End-of-life–List preferences and arrangements that have been made.

It’s also a good idea to create a two-page, bulleted version for quick reference, with details such as key phone numbers, “meltdown techniques,” and buzzwords or colors that can trigger a negative reaction.

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