Parent holding a child
Parent holding a child

As the parent of a young man with special needs, I have long thought about for his future when I am no longer here to care for him. How do I make sure that his wishes for how he wants to live his life are respected? This is a concern for all parents of children with disabilities who will not be able to live on their own without help.
A will and special needs trust are needed to preserve any benefits the person with disabilities receives. Parents should contact a lawyer who is an expert in estate planning to write both the will and the trust.
A Letter of Intent is a letter that shows your vision for your child’s life when you are no longer here. As the person who knows your child best, it is very important that the parent(s) of a child with disabilities write this letter. It not a legal document, but it should be kept with your will, trust, and other important papers. The letter will guide the person(s) who will be caring for your child when you are gone. It will include your child’s likes, dislikes, hopes, and dreams. This letter should be written with as much help as possible from your child – it is his/her life! It should include the following:

• Choose carefully.
• Choose more than one person in case the first person can’t or won’t care for your child when the time comes.
• If possible, honor your child’s choice.
• Love isn’t always enough, make sure the person you choose can give your child the love and the care he/she needs.
• Name caregivers choices in your will

• Current medical providers
• Current medication – what is given, how it is given, and for what reason
• Medications that have not worked or have caused problems
• Allergies
• Relevant medical records and evaluations should be attached

Family and Friends
• Names and contact information of the important people in your child’s life
• Describe these people; who they are and what they mean to your child
• Share memories your child shared with these people and favorite interests and activities they share.

• Favorite sports/activities
• Teams on which he/she is a member
• Camps or vacation locations he/she enjoys
• Spending money – how much every week to spend as he/she wishes

• Educational history
• Academic skill levels
• Daily living skill levels
• Special interests and skills
• Child’s educational/job training goals
• Plans for future education/job training
• Behavioral plan

• Job history with job description(s)
• Skills and interests
• Job training history
• Type of work your child likes
• Level and kind of support needed

• Where does your child live now?
• Does your child want to live with a certain friend or family member?
• How about a group home?
• What is needed to make the home safe and comfortable for your child?

Other information
• Funeral and burial/cremation wishes
• Religious/spiritual beliefs and practices
• Any other information you think future caregivers need to know about your child

Plan now, review yearly, and make changes to the plan as needed.

Here are some websites that have more helpful information: