Writing a letter of intent (LOI) for your special needs child can help bring them continuity and comfort after you are gone. As a parent, the most valuable asset your child has is you and your ability to care for them. You, like no other, fully understand the nuances of your child’s coping mechanisms and what can trigger adverse outcomes. A letter of intent is meant to convey these broad personality traits as well as practical details of your child’s life so that in your absence, another family member or caretaker can make sound decisions about your child’s forward care. Don’t think a letter of intent is something to write when you get older. Parents of all ages with special needs children should have a letter of intent, review it annually, and update its contents if appropriate. Accidents and illness that may befall you are as prevalent a need to have a letter of intent as is your eventual death.
Though an LOI is not a legal document, it is one of the most important documents a parent can prepare for the future well-being of their special needs child. The letter plays a central role in your child’s special needs plan by putting your perspective on the details of their life. You can begin your letter by identifying the categories you want to address and then filling in details. There are templates of LOI available on the internet, and you might want to use one as a starting point for your letter if you feel overwhelmed and need some structure to begin.
The letter’s purpose is to guide a trustee, family member, or guardian tasked with the care of your dependent child. You will need to sort through feelings and expectations as well as noting people, places, and services that relate to your child. You may want to spend a week taking notes throughout your day as you interact with your child to think through some of the broader issues, documenting how you feel about your child and their future. The Special Needs Alliance has identified some excellent categories to include in your letter of intent. Each category can be found in the boldface type.
Outlining your family history is an excellent place to begin. When and where you were born and raised. If you are married, describe when and how you met. Include anecdotes about your grandparents, brothers and sisters, other relatives and special friends. Incorporate when and where your child was born and raised. List their siblings, and who was particularly special to them. Don’t overlook special family pets that may have a significant impact on your child. Recount fond memories, favorite times, and feelings about your child. Provide contact information for family members and friends. Follow the family history section with a general overview, summarizing your child’s life to the present and your thoughts and hopes about how you envision your child’s future.
Next, provide the details of your child’s daily schedule to give context to their caregiver. What are the best ways to communicate with your child and how to best manage their behaviors? Do they have hot button words that should be avoided? Who are your child’s teachers, aides, bus drivers, social service providers, or employers? Be as descriptive as possible about your child’s favorite activities and events and also include what your child doesn’t like. Some children love to rake leaves but get frustrated when tasked with folding the laundry, and these details are useful for future caregivers.
Does your child require assistance with personal care? What size clothing do they wear? What are their personality traits? Do they participate in social activities? What upsets your child? What situations are best to avoid? How do you want a guardian to discuss your death or incapacity? These are some of the questions you can answer in your letter of intent. You can detail your child’s food likes and dislikes, including any allergies they may have. Did you make your child a special birthday cake? What are your traditional family holiday menus? Compile recipes or describe any specific way food should be prepared or served. Remember that some foods can affect the medications that your child may take.
Next, broach the topic of medical care. Include the detail of your child’s specific disability(s), medical history, and include the medical history of immediate family members. Name all medications your child takes and describe how they are administered and for what purpose they are given. Include any allergies your child may have. Provide a list of their current doctors, therapists, hospitals, and clinics. Include how often your child has medical and therapy appointments and describe the purposes of and goals for these sessions. List all of your child’s current health insurance information. If your child has medical records that can be retrieved online, provide the accounts username, password, and any other relevant data.
If your child is still in school, describe their educational life. What have their experiences been, and what do you desire for their future education? Note what school your child attends and what schools would you like your child to attend in the future. Does the school provide specialized services to your child? Does your child participate in extracurricular activities? Address your wishes regarding the type of education you prefer they receive, such as vocational or academic. If there are specific programs or teachers, you want to be involved in your child’s overall life plan, name them, and provide contact information.
If your child is employed or you hope them to be in the future, describe how you envision their employment. What types of work and work environments would be beneficial to your child?
List all government benefits your child receives. These benefits may include Medicaid, Medicare, Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Supplemental Nutrition Assistance Program (SNAP, aka food stamps), and any housing assistance. Provide your child and both parents Social Security numbers. Give agency contact information, your child’s case numbers, and discuss the recertification process of each benefit. Include all reporting requirements and important dates so that benefits do not lapse. Provide copies of financial documents.
How do you imagine your child’s residential environment? Is it your plan for your child to remain with family, friends, or will there be an organization tasked with their living situation? If your child is unable to stay with the family, what is your hope for an alternative living environment? If they are placed in a group home, would you like it to be in your current community? Should the living arrangements be in a smaller or larger setting? Does your child want to live alone or have roommates?
What type of social environment does your child prefer? Do they enjoy sports, movies, or video games? Can your child be given spending money, and how have they fared handling cash in the past? Does your child travel to visit family or take vacations? With whom do they travel most successfully and happily? Include a description of your child’s religious environment. Does your child routinely attend services? What church, synagogue, or mosque do they frequent? What local clergy might know your family and your child?
What are your desires for your child’s final arrangements? Does your child have a will and any advance directives? Where are these legal documents? Have you planned for a funeral, burial or cremation, cemetery, gravestone, or religious service? Is there someone specific you prefer to officiate the ceremony?
As your letter of intent takes shape, you might realize there is other information you want to share to provide the best guidance to the person who will care for your child. In your annual review of your LOI, you may find some passages unnecessary as your child grows up. You may want to include new detail as your child’s personality develops. Think of it as a living document to be edited, added to, whatever you think will serve your child’s interests best. Put your letter of intent with your other relevant legal and personal documents. Writing a letter of intent can be a very emotional experience and a difficult document to write because you must think about how your child will live in the world without you, their parent. Approach this letter as a gift to your child and their future. You know your child better than anyone else. Even in your absence, you can still help to guide their future life, hopes, and dreams.