When I gave birth to my third child 19 years ago, something went terribly wrong, resulting in a catastrophic birth to my son and a significant brain injury.
I was suddenly thrown into this new world. There were some positives, as many people wanted to help. I had doctors, attorneys, financial advisors, and other moms giving me lots of advice. When things were new, it was so difficult to navigate, but one piece of advice always stood out – “Kelly, if you do nothing else, create a letter of intent. You will never regret it.” At that point, I was determined to learn more about this letter of intent and why it was so important. And here’s what I’ve learned.
Every person has different needs, and everyone has different wishes for their loved one. The letter of intent (LOI) can provide a parent or guardian who is caring for a loved one with special needs the opportunity to help future caregivers quickly learn how to deliver the very best care possible for their loved one.
What Is a Letter of Intent?
Although this is not a legally binding document, it can help ensure that future caregivers understand your wishes for your loved one with special needs. It will also allow the caregiver to learn more quickly how to deliver the very best care possible.
The LOI is a way of communicating your desires and concerns, as well as caregiving instructions to future caregivers, guardians, trustees, and advocates of dependents with special needs.
The LOI is, therefore, a valuable planning tool. It’s a letter to the future, so include anything you feel is important.
Consider Dividing Your LOI Into Several Sections
• Biographical and personal information, such as name, date of birth, and religious preferences.
• Medical. Include the history of diagnoses and medical conditions.
• Daily routines, personality traits, diet, and other preferences.
• Contact information of support network of family, friends, and service providers.
• Perhaps most importantly, your vision for your loved one’s future.
Points That Should Be Included
• Describe your loved one’s current diagnosis and medical condition, medications, doctors, allergies, hospitalizations, etc.
• Does he/she currently live with you? Where do you see him/her living in the future?
• What does he/she like to do for fun?
• What are his/her strengths and weaknesses?
• Describe his/her education and work history
• Who is the current caregiver’s choice of successor caregiver/guardian?
Ways to Create a Letter of Intent
Templates are available online that are downloadable and fillable but don’t be afraid to go beyond what is asked and provide more information.
Some find that it’s easier and quicker to create the LOI by video. This can help to show therapies or routines more easily.
It Takes a Team
Communication is essential. Just as caring for a loved one with special needs is a family affair, so is the related planning.
Have a family meeting to discuss future needs, concerns, and future care options.
Create a team that includes family members, medical professionals, caregivers, social workers, and don’t forget teachers. Teachers keep a detailed report on each child they work with, and you should have access to that information for your records. It will help you plan for their future more easily. Also include professionals both financial and legal who have a focus on special needs.
Contact local nonprofit organizations for additional resource support. Your local nonprofit may be able to provide resources that can help with planning or that supplement the standard services provided by government agencies. A good starting place is first to contact a nonprofit dedicated to your dependent’s special need. Other resources of information and support are newsletters/publications and support groups.
Things to Consider: Important
• If possible, involve your loved one with special needs in the planning and in the LOI.
• Make several copies of all documents -- for yourself, your lawyer, a trusted friend or family member, and for any future caregivers.
• Review and update documents annually or any time important life changes occur.
• Include both current information as well as significant history, such as past medical records.
Any information about the life of the person you are caring for can go into the letter of intent. Is there a doctor who has been great and has helped the person you are caring for? Is there a special diet and or therapy that has been extremely helpful? Adversely, is there a doctor who was not good, or a person who should not be involved in their life? Does your loved one with special needs prefer to brush their teeth with warm water vs. cold? Are there annual trips or vacations that should continue?
A letter of intent can have anything that is or has been important in the person’s life. It will also help future caregivers with planning for the person’s life more easily.