Preparing a Letter of Intent For Your Child With Special Needs

By Amy C. O’Hara, CELA, Partner

No one else knows your child as well as you do, and no one ever could. You are a walking encyclopedia of your child’s history, experiences, habits, and wishes. If your child has special needs, the family’s history adds a helpful chapter to your child’s book, one detailing his unique medical, behavioral and educational requirements.

What would happen if you suddenly became unable to provide your child with the necessary supports he needs? Without you, your child would become dependent on other caregivers who simply do not possess all of your personal knowledge and insight. However, there are steps you can take now to minimize the natural disruption and disorientation that will occur upon your death or if you become unable to care for your child during your lifetime.

First and foremost, you should put into place supported decision making for your child to assist with personal financial and medical decisions.  Depending on your child’s functioning, this is accomplished by either appointing a legal guardian through a court proceeding or having your child execute a power of attorney and health care proxy.

Second, you should prepare a letter of intent to help loved ones and your child manage a difficult transition when you no longer are the primary caregiver. A letter of intent is an important planning tool for parents of children with special needs (including adult children), and also may be useful when planning for minor children who are not  expected to face special challenges.

Although a letter of intent can be considered one of the most important estate planning documents a parent can prepare, it is not a formal legal document that must be created by an attorney. The goal of a letter of intent is to memorialize your knowledge of your child’s needs so that you may guide future caregivers, guardians and trustees in providing the best possible care to your child. Simply put, a thoughtful letter of intent ensures that those who come after you need not waste precious time figuring out the best way to manage and care for your child.

At minimum, the letter can address the following points regarding your child: family history, daily schedule; food likes and dislikes, medical care, education, government benefits received, employment, residential environment, social environment, religious preferences, behavior management, and funeral arrangements.

Once you prepare, sign and date the letter of intent, you should review the document annually and update it as necessary. It is important that you let your child’s potential future caregiver know the letter of intent exists and where it can be accessed; even better, you can review the document with the caregiver on an annual basis. The letter of intent should be placed with all of your other relevant legal and personal documents concerning your child.

The letter of intent can be a difficult and extremely emotional document to write, as you are envisioning a time when your child is navigating this world without you. However, once it is completed, the first important step has been taken toward creating a detailed road map for future caregivers and trustees. As a parent you also may be relieved to know that you are ensuring the highest quality of life for your child by laying the foundation for as seamless a transition as possible after you are gone.

Learn more about our special needs planning and special education advocacy services at www.littmankrooks.com or www.specialneedsnewyork.com.

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