When you have a child with a disability or special health care needs, answering the question of what will happen to them if you are not able to take care of them is very important.
You can get powers of attorney, designate a guardian if needed, and take care of money and property through a will or special needs trust. But, what about your child’s everyday care? What about their school needs? What about the medications and medical procedures they need?
You know so much about your child’s unique needs, likes, and dislikes that you sometimes take care of them without even thinking. Imagine if everyone else who took care of them knew these things just as easily.
That’s the purpose of a Letter of Intent, often called an LOI.
An LOI is a document that serves as a life plan for your child. It helps to properly direct their overall care, if you aren’t around to oversee things. Even though you don’t use a lawyer to write this letter, and it doesn’t need to be notarized, the court might use it to direct a future caregiver. And a medical team might use it to make their decisions. When you combine an LOI with your other legal documents, as well as a will and a special needs trust, you have a set of tools to make sure your child is taken care of even if you aren’t around or able to.
What Goes Into a Letter of Intent?
The LOI should describe everything involved in taking care of your child. It might cover these areas:
- Financial and legal issues.
- Medical issues, health, and wellness.
- Personal care.
- Fun or relaxing activities your child likes.
- Spirituality and faith.
- Routines and special considerations.
- Hopes and dreams for the future.
- Communication systems.
- Behavior supports and recommended responses to challenging behaviors.
How Do I Write an LOI?
Creating an LOI might seem like a lot of work at first.
But, the good news is that you don’t have to put it together in a single sitting. An LOI should be a living document that changes as your child’s development, desires, needs, abilities, and caregivers change. That means you can take your time to create each part of the plan and update it when needed.
Tips for Writing an LOI
- Start with a template. The Arc has a good one. And Vest offers a cloud-based version you might like—it has a cost.
- Involve your child in the process as much as they are able. Have them help you answer the questions about their dreams and desires, likes, and dislikes.
- Don’t try to do it all in 1 chunk. Take small bites out of the entire plan by filling in a section at a time. Maybe even set a certain day of each month to work on it.
- Involve friends and loved ones in the process. They might have good suggestions or can just help to keep you on track with your writing.
What to Do Once You Have Your LOI
Once you’ve written the LOI, take a deep breath and congratulate yourself! Here are some tips to get the most use out of it:
- Store an up-to-date LOI copy with your will and make sure your loved ones know where to find it.
- Use it as a tool for advocacy. Because it clearly lists preferences and needs, it can help you or your child advocate with their doctor, school, or health insurance company. Even if these people have not seen an LOI before, pointing out how it includes a clear list of your child’s needs can help your discussion.
- Pick a date each year to review and update the LOI.
A personal network can offer your child a group of people who are familiar with many of the important things in a LOI document. To learn more, see our page on Personal Networks.
Creative Uses for Your LOI
- Share it with teachers or summer camp directors just in case a medical need comes up, and so they can better know your child’s needs.
- Use the wants and needs section to direct your school-planning meetings.
- Use it to train any new caregivers.
- Read it over whenever you’re making a big plan or decision for your child.
- Use your LOI updates to track your child’s accomplishments and growth. Maybe they have new dreams, more independence, or different skills than in the past.
- Keep a copy in your care notebook to bring to doctor’s visits.