By Barry Jamieson, CFP®, MA

There are many dimensions to a family’s special needs plan. Past articles in the Disability Insights series have focused on estate and financial planning topics; however, as families well know, the daily considerations and routines of the child with a disability are also a key component of the special needs plan. A detailed summary of these caregiving details, often referred to as a letter of intent (LOI), is beneficial to future guardians and caregivers, since they are likely not to know the individual’s daily routine in depth. This article outlines some important considerations in drafting the letter of intent.

What is it?
A letter of intent (LOI) addresses the day to day needs of the individual and includes key contact information. It often accompanies a family’s estate planning documents. However, unlike a will or trust document, the letter of intent is not a legal document, rather it is a guideline for future caregivers to use. Since the routines of the individual can be varied and complex, summarizing all this information can be a daunting task. In one article devoted to this topic, the author suggested starting the LOI as if the family were going away on a long trip and putting together notes for the caregiver.

Key Elements to Include in the Letter of Intent
Contact Information: Lawyer, doctor, therapists, and key family relationships;
Medical: Medications, medical history and routine medical care;
Housing: Where will the individual be living and with whom;
Work: Type of work the individual enjoys. Sheltered workshop versus community employment;
Routines:Daily habits and personal care routines;
Behavior Management: What programs are currently being used? What hasn’t worked in the past;
Recreation/Leisure: Entertainment your loved one enjoys, spending money, favorite vacations;
Spirituality: Place of worship. Local clergy who know your son or daughter;
Final Arrangements: Burial plans and arrangements with funeral home.

Drafting and Updating Your Letter of Intent
It is great idea to involve your son or daughter with a disability in drafting the LOI. After all, they are best able to articulate what is important to them. Since your child’s life goals and needs change over time, it is important to update the LOI regularly. Many choose the child’s birthday as a reminder to update the LOI. It is also important to provide copies of the LOI to family members and other key people in your child’s life so they are aware of the plan.

Summarizing all of your child’s needs, routines, desires, and key information in one document is an overwhelming task for many caregivers. As it is with other components of the special needs plan, the key is to get started. To help you get started, there are many wonderful examples and articles, some of which are outlined in the reference section. Start with a few elements of the LOI, like key contacts and medical information. Know that as you draft the LOI, you will be making life that much better for your loved one as well as his or her guardian.

Special Needs Answers, “Writing a Memorandum of Intent for Your Child With Special Needs”,
“Guidelines for Letter of Intent for a Special Needs Trust”,
Russell, L. Mark and. Grant, Arnold E, “Letter of Intent Form”,, 2005.
“Quick Way to Begin Writing a Letter of Intent”,
“The Top 10 Items to Have In A Letter of Intent”,

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