If you are a parent of a special needs child, minor or adult, and you want to make sure your child’s care, and day to day life continues with as much normalcy as possible at your death, you should consider writing a letter of intent.
A letter of intent is a set of instructions outlining your wishes for the day to day care and management of your child’s life when you are gone. When you pass on and leave money for the child in a special needs trust, this document will contain important information that will guide your trustee in using the trust assets for the benefit of your child.
Every person, special needs or not, has a daily routine, and specific likes and dislikes. Writing down this routine, along with likes and dislikes can help a caregiver or a trustee with the responsibility for paying for care, make decisions that will provide consistency and a feeling of comfort at the loss or incapacity of a caregiving parent. No one likes their routine upended, and a change in routine is particularly difficult for some children or adults with special needs.
A typical letter of intent, along with day to day activities and routines, will cover such things as favorite foods, favorite clothes, tv shows, movies, social activities and friends.
It will also have a medical history, list of current physicians, medications, therapies, and treatments. I would suggest this page be added as an addendum so it can be updated yearly.
It would also include any information about triggers in the environment that can cause distress, such as loud noises, animals, or crowed elevators. Likewise, does music, dancing, or wearing a headphone to block out certain noises calm your child?
Family background and Information will be important in making sure your child stays connected to those people who are important and that you want to be an active participant in your child’s life.
Any details that would help a new caregiver are important and your personal statement regarding your hopes and desires for your child as they age can be invaluable in helping a future caregiver or trustee make decisions for your child that you would make if you could.
There are fillable forms for this type of documents, but I always recommend clients write it out long hand (if their handwriting is legible) as this seems to carry more weight years later as it is more personal than a typewritten letter. However, keeping a handwritten letter may prove hard to update, so a handwritten cover letter with attachments would likely be more easily maintained and updated as necessary.