The Value of a Letter of Intent
If you have a child or adult with a disability or other special need, you know better than anyone what kind of care and accommodations he or she needs. A Letter of Intent (LOI) provides caregiving instructions to future guardians, trustees and advocates to help make sure that even if something happens to you, your loved one can continue to thrive.
How an LOI Works
A LOI is an important supplement to a will or trust that helps future guardians or trustees understand and carry out your family’s wishes for your loved one’s care. Usually an LOI includes a summary of family and financial information and the child or adult’s medical and social history, as well as special instructions and preferences. The length may vary, but more detail is better than less, especially if your child is non-communicative.
If you have a Special Needs Trust set up for your child, the LOI should state specifically that the instructions it contains aren’t binding. That way, it’s clear that use of the trust fund isn’t conditional on following the exact text of the LOI. Be sure to work with an attorney who has experience creating this kind of specialized trust to help you draft your LOI.
More Than Just the Details
After years of experience, only you know what comforts your loved one (or upsets him or her) and how to anticipate their reaction in certain situations. And you’re the expert at how your family deals with medical emergencies, behavioral challenges or learning needs. An LOI is your chance to pass that knowledge and experience along.
When writing your LOI, use everyday language whenever possible. Remember, a caregiver reading the letter might not understand all medical terms. Also think beyond the clinical and include details for everyday situations – for example, ways to calm your child down during an emotionally upsetting episode, strategies for traveling, or resources available in the community.
The more specifics you can provide, the better. For example, your LOI might explain how certain situations or crowded places can trigger excitability or discomfort in your child. You can then include the strategies that work to relieve him or her.
It’s also a good idea to get your child’s input as you write your LOI. Ask what makes him or her happiest: going to worship services, visiting with a favorite aunt, wearing a certain jersey to a sporting event? If your child is an adult, ask what’s important in the bigger picture: Getting an education, working outside the home, being around family and friends? High-functioning children and adults, including those with physical disabilities and no cognitive impairment, can contribute a lot to the conversation.
Review and Revise
It’s important to revisit your LOI at every major life transition, including your child’s move from elementary to middle school, middle school to high school, and high school into adulthood. You’ll also need to update the LOI if your child has any medical changes, like an allergic reaction to a certain medication, or if one form of therapy is replaced with another.
It’s critical to stay on top of changes in benefit laws, too. For example, make sure your LOI is written so your child won’t be disqualified for government assistance like Medicaid or Med-waiver, which provide important services like therapies, respite care and housing benefits. An attorney or Financial Professional with experience in working with special needs families can help you with this.
A great way to get started drafting an LOI is the free template available from MassMutual, which walks you through the whole process.
Peace of Mind for You and Your Family
An LOI is much more than a set of instructions. It’s a reflection of your love for your child and your family’s core values. And it’s one of the best things you can do to help ensure that your child will get the right kind of care and support, even if you’re not there to provide it.