Providing for a child or adult with special needs requires meticulous planning. Once families have created their special needs trust, ensured medical benefits are in place and preserved, and selected a capable trustee to manage their loved one’s assets or inheritance, what else is needed? The answer perhaps is one of the most important pieces – not a formal legal document, but something much more personal—the “letter of intent.” For parents, just as a child is so much more than the sum of his/her talents and challenges, the letter of intent goes beyond the mechanisms of asset preservation and distribution to address the “what” and “how” to go about promoting your child’s quality of life and overall well-being.
So, what exactly is a letter of intent? Essentially, a letter of intent (or letter of instruction), is created to capture what you, as parents, know best about caring for your child and his/her likes, dislikes, and preferences. No detail is too small. Think of a typical day and all the various activities it encompasses. The objective is to equip the future caregiving team with all the information you can to minimize the inevitable disruption and distress your child will experience when you are not there. Understandably, the process of writing a letter of intent is difficult and emotionally challenging for parents or caregivers, but by serving as a knowledgeable blueprint for those who will care for your child in the future, it simply is invaluable. A letter of intent also will allow you to give any future caregiving team the gift of truly seeing your child through your eyes.
While every letter of intent is different, there are some key areas to consider when writing yours:
Where is the family today? Provide some background on your child’s life thus far, including key areas/events relevant. What are your hopes for your child’s future and what might a caregiver need to know about your child today?
What is the family’s history? Share some generational details about where parents or grandparents were born, lived, and any major milestones (marriage, births i.e.). What are your family’s favorite stories or anecdotes? With input from your child, write your child’s story, including special family connections and memories.
What does the daily routine look like? Walk the later reader of the letter of intent through a typical day, including how your child is participates and supports his/her own care. No detail is too small, for instance, does your child have a specific routine? What toothpaste will get the nod of approval? To what extent can your child participate in selecting clothing and dressing for the day? What household tasks does your child like to help with? Include favorite recreational activities, and how you help your child destress when needed.
What does your child enjoy eating or need to avoid? Are there any food sensitivities or allergies? What are his/her food likes and dislikes? How should meals be prepared and what times do you eat as a family?
Medical details. Talk about medications, medical history, appointments, providers. Are there any therapies or medications that haven’t worked in the past, what are they, and why?
The benefit picture. Outline all governmental benefits your child has applied for and received. It is helpful to include key contact and case number information, and to mention any key dates for recertification and reporting requirements.
What are the living and social environments like? Describe current living arrangements and what you consider to be an optimum living environment for your child. Sharing favorite social activities and the level of independence your child can exercise will be important to a guardian or extended family members in the future.
Are there any spiritual needs to know about? Do you and/or your child regularly attend church or have a religious preference? Are there spiritual advisors or close friends who are part of the family’s support network?
What to expect behaviorally. Share any behavior management history, and the strategies that your family has used successfully to achieve harmony and progress in the past.
What else is important to know? Chances are, once you start preparing your letter of intent, you will think of more information to share. Other family members closely involved in your child’s life also may have important observations and information to round out the letter.
By painting a fuller picture of the life and needs of a special needs child, parents’ letter of intent serves as an critical part of an overall estate and care plan. The letter ensures that your child feels supported and understood throughout his/her lifetime. Every letter of intent is different, just as every child and family is unique. The information shared in this article highlights only a sampling of the issues to consider. For more letter of intent information, check out the resources available through the Special Needs Alliance, from fellow attorneys experienced in helping the families of individuals with special needs.