By Brian Rubin, Attorney and Parent of a 31-Year-Old Son with Autism
A letter of intent (LOI), also referred to as a letter of guidance, is a roadmap for your child’s “Future Team,” the future trustees, guardians, and caregivers (both family and professional service providers). No one knows and understands your child as you do, but, unfortunately, others will someday be responsible for your child’s care. Even siblings, used to your central caregiving role, are likely to be unaware of important specifics. This document is meant to minimize the inevitable disruptions in your child’s life upon your passing and to communicate your wishes concerning his future.
The document should describe the large and small details that will enable the Future Team to optimize your child’s quality of life. Try to capture a typical day. What are his routines and preferences? Does your child need to be reminded to brush his teeth? If there’s a meltdown, what works and what doesn’t? It should also include records covering medical history, education, support services and government benefits. Discuss your hopes regarding residential options and employment.
Outlines are available from special needs attorneys and on the Internet, however, your child is unique, so use what’s applicable and ignore the rest. Make it a family affair, sitting down at the kitchen table with your spouse and kids to capture everyone’s perspective. If at all possible, have your child with special needs contribute. You may also want to consult a few teachers, since what works for a parent may not be effective for a non-family member.
Write from your heart, in plain English. Although it will necessarily become lengthy, create a two-page summary for caregivers who will need a quick reference. Remember that throughout your child’s life, there will be staff turnover and temporary replacements among many of the professionals charged with aspects of your child’s care. Share the document ahead of time with the most important members of your child’s Future Team so that they can ask you questions. Update the LOI annually, more often while your child is growing up.
An LOI is distinct from the life planning that assesses your child’s financial needs, then coordinates public and private resources. A letter of intent is meant to capture the fabric of your child’s life and to prevent trial and error on the part of caregivers. Although compiling a lifetime’s learning can be both daunting and emotional, don’t be deterred. You’ve spent years advocating on behalf of your child. Those who will assume that responsibility in your absence should benefit from your experience.