What is a Letter of Intent for Child With Special Needs

A letter of intent is not a legally-binding document. Rather, it provides detailed information about a child with special needs. This letter guides caregivers, guardians, and trustees responsible for the child’s well-being after the parents or primary caregivers can no longer provide care. While it does not have the legal standing of a will or trust, it complements these documents by offering personalized insights and instructions.

Why is a Letter of Intent Important for Special Needs Children?

Every parent worries about whether their children will be well-cared for if tragedy strikes. These worries are compounded for parents of children with special needs, who may lack the capacity to communicate their needs to caregivers. Parents intimately know their children’s needs and desires, likes and dislikes, and the care and services they are receiving. But what happens if you are no longer living? How can you ensure that your child’s guardian will have all the information they need to care for your child when you’re gone?

One of the primary benefits of a letter of intent is ensuring continuity of care. A Special Needs Trust can provide for your disabled child’s supplemental financial needs. However, it will likely not contain information vital to ensuring continuity in their care. That’s why all parents of children with special needs should also prepare a letter of intent.

When new caregivers take over, a detailed letter of intent helps them understand the child’s needs, preferences, and routines. This facilitating a seamless transition and reduces the risk of disruption in the child’s life. Additionally, the letter of intent provides specific information about the child’s medical history, educational needs, social preferences, and behavioral traits. This level of personalization is crucial for maintaining the child’s quality of life and ensuring their unique needs are met.

Key Components to Include in a Letter of Intent

A thorough and personlized letter of intent should include information such as:

• Emergency Contacts: Names, addresses and phone numbers of people to contact in the event of your incapacity or death.
• Child’s Personal Information child’s family history, as well as names and contact information for family members who have a good relationship with your child.
• Personal Contacts: The names, addresses and phone numbers of close friends who have a good relationship with your child.
• Medical History: Facts relating to your child’s medical condition and names, addresses and phone numbers of those actively involved in your child’s medical care.
• Interests and Preferences: Your child’s interests, personality traits, likes and dislikes, including the types of social activities your child enjoys.
• Daily Routines: Your child’s day to day routines such as mealtimes, bedtimes, and extracurricular activities.
• Educational Needs: Information about the child’s current educational setting, special education requirements, and any programs or services that are beneficial.
• Future Goals and Aspirations: Long-term goals for the child’s development, including educational, social, and vocational aspirations.
• Work or Volunteer Activities: Information about any paid or volunteer positions that your child had held and/or what types of jobs he or she might enjoy.
• Religious or Cultural Preferences: Your child’s religious beliefs, including where he or she attends religious services, the names of ministers who are familiar with your child and your hopes for his or her religious upbringing.
• Care Environment: The environment in which you would want your child to live as an adult, such with relatives or in a group home.
• Extra Information: Any other information you believe is relevant to your child’s care.

The Arc of Texas has a sample letter of intent which you can access by clicking here.

Tips for Creating an Effective Letter of Intent

To ensure that your Letter of Intent is comprehensive and effective, consider the following tips:

• Be Specific and Detailed: The more detailed the letter, the better equipped future caregivers will be to provide consistent and appropriate care. Include specific instructions and preferences wherever possible.
• Update Regularly: As the child’s needs and circumstances change, update the letter of intent to reflect these changes. Regular updates ensure that the document remains relevant and accurate.
• Consult with Professionals: Work with healthcare providers, educators, and legal professionals to gather comprehensive information and ensure you’ve addressed all critical information.
• Involve Family Members: Engage family members in the process to ensure that the document reflects a collective understanding of the child’s needs and preferences.
• Store and Share Securely: Keep the Letter of Intent in a secure location, and share it with trusted individuals, including legal guardians, trustees, and close family members.

Does My Letter of Intent Have to Be In Any Specific Format?

The letter of intent does not have to be in any specific format. You can handwrite it or type it, but typing it can make it easier to update it regularly as your child’s needs change. But, whatever the format, a letter of intent can ensure your child’s caregivers have the knowledge and insights they need to support their unique needs when you are no longer able to.

As a constant in your child’s life, you know him or her better than anyone. Providing a letter of intent to the person who will assume the responsibility for your child’s care will ensure that he or she is up to speed a lot more quickly and better able to provide for your child’s needs.

This article was originally published on April 4, 2011 and updated on June 10, 2024.