There is no doubt that you know your children better than anyone else. But there comes a time when you will no longer be there and will need to turn over his or her care to someone else. While an estate plan can provide for your child’s financial future, there are some matters that cannot be addressed in a will or special needs trust. It is important that parents of a disabled child prepare a Letter of Intent, which is an informal document that outlines your hopes, desires and visions for your child when you can no longer provide for him or her.
The Letter of Intent will help the person caring for your child. By compiling as much information about your child, his or her history, his or her current needs and your visions for his or her future, you will be giving future care providers the knowledge and insight they will need to provide the best possible care for your child. The Letter can also provide valuable information about your child’s personality, his or her likes, dislikes, talents, special problems, strengths and weaknesses. Your child’s caregiver will not have to waste precious time learning the most appropriate behavior or medical management techniques to use
Although the Letter of Intent is not a legal document, the court and others may rely upon it for guidance in understanding your child. It also allows you to continue to speak out on behalf of your child, providing invaluable insight and knowledge about his or her best possible care in the event of your death or incapacitation.
This is an emotional letter and not easy to write. However, it is essential that every parent go through this very difficult step to ensure a well planned future for their special needs child. It is a way to protect your child from unnecessary chaos and turmoil when he or she must depend on someone other than you for the necessary care and support. Once you write the letter, it should be updated annually or when information about your son or daughter changes. This letter should be placed with all of your other relative legal and personal documents concerning your child.
At a minimum, the Letter of Intent should address the following points:
Background and Family History
Where and when you were born, raised, married; names and contact information for siblings, grandparents, and other special relatives and friends; description of your child’s birth, when, where, etc.
A brief overview of your child’s life to date, including daily activities, interests, recreation, times of wake, nap, meals, sleep, etc.; personality traits; help needed with daily living functions such as self-care, hygiene, administering medications, cooking, transport; type of caregiver that works best with the disabled person; special activities (fitness, vacations and trips, piano lessons, etc); any services and benefits the disabled person receives.
Summary of educational experiences and desires for future education; highest level achieved, and any specific teaching techniques or emphasis on particular learning or skills that worked or didn’t work; level of basic academic skills, such as reading, arithmetic, writing, as well as any special skills or talents; regular classes, special classes, special schools, related services, mainstreaming, extracurricular activities and recreation; types of educational emphasis, i.e., vocational, academic, total communication, etc.; name of specific programs, school, teachers, related services providers.
Types of work your child may enjoy; open employment with supervision, sheltered workshop, activity center, etc.; companies that you are aware of that may be of interest to your child and provide employment in the community; prior or current job, including job descriptions.
Past and current living situations; best overall living situation and why; arrangements for future living situations that would be preferable for the disabled person, such as living with a particular relative, friend, group home or institution in same community; minimum size of home needed and any restrictions or adaptations that are needed for the home; ideal community or neighborhood for the disabled person.
Types of social activities your child enjoys, i.e. sports, dances, movies, etc.; should they have spending money and how they should spend it; favorite foods and eating habits; does your child take and/or enjoy vacations.
Religious and Spiritual Environment
Specify religion; local place of worship your family attends; local clergy that may be familiar with your family; has there been religious education and is this an interest to your child.
Medical diagnosis and care; intellectual functioning; current doctors, therapists, clinics, hospitals etc. and how frequently your child attends and for what purpose; current medications, how given, for what purpose; describe medications that have not worked in the past;
Describe current behavior management program that is being used; other behavior management programs that have not worked.
Desires for your child’s funeral arrangements – including – prearrangements you have made (if any), choice of funeral home, cremation or burial, cemetery, monument, religious service and clergy.
Include any other information you feel will help the person caring for your child provide the best possible care, such as values, hopes, wishes, rights, preferences, relationships, etc.