OARacle Newsletter

This original version of this article appeared on the Maryland Financial Advocates website. It is reposted here with permission from its author. 

What would happen if you suddenly became unable to provide your child with the necessary supports he or she needs? Without you, your child would become dependent on other caregivers who 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 appoint a legal guardian for any child who is not expected to be able to manage personal, financial, or medical decisions without assistance. Second, you should prepare a letter of intent to help loved ones and your child manage a difficult transition when you are no longer the primary caregiver.  

A letter of intent is an important planning tool for parents of children with special needs (including adult children). It could also be useful when planning for minor children who are expected to face special challenges. Although a letter of intent is one of the most important estate planning documents a parent can prepare, it is not a formal legal document and you don’t need an attorney to prepare it. It won’t cost you a dime, and it can be as simple as a handwritten letter on a notepad. The most important part of a letter of intent is to get it started. You’ll be surprised and impressed with what you come up with. And your family will be better off because you took the time to do it.  

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.  

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 their unique medical, behavioral, and educational requirements.  

What to Include in the Letter of Intent

The letter of intent may be addressed to anyone you wish – for example “To Whom it May Concern,” “To my Guardian(s), Trustee(s) and Executor.” At minimum, the letter should address the following:  

Family history: The history can include where and when you and your spouse were born, raised, and married, including anecdotes about your siblings, grandparents, other relatives, and special friends. A description of your child’s birth and their connections to specific family members or friends will complement your account of favorite memories and feelings about your child.  

General overview: Use the overview to give a brief summary of your child’s life to date and your general thoughts and hopes about your child’s future.  

Daily schedule: Because levels of functionality vary for each child and future caregivers may fail to recognize this fact, it is important to include a list of your child’s daily routines, favorite activities, and events or tasks they love or hate. Because a child’s ability to contribute to even the most mundane aspects of family life builds self-esteem, it is important that the letter mentions whether your child can help with tasks like doing the dishes or raking leaves. Alternatively, if your child loves “swiffing” the floor but folding clothes frustrates them, make sure future caregivers have this information.  

Food: Describe your child’s diet, including their favorite foods and any specific manner in which the food should be prepared or served. Be certain that the letter also includes a list of foods to which your child is allergic, simply does not like, or otherwise may react to adversely due to medication.  

Medical care: Describe in detail your child’s disability, medical history, and allergies, as well as current doctors, therapists, and hospitals. Detail the frequency of your child’s medical and therapy appointments and the purposes and goals of these sessions. List current medications, including how they are administered and for what purpose, and be careful to describe all medications that have not worked for your child in the past.  

Education: Detail your child’s educational experiences and describe your desire for your child’s future education, including regular and special classes, specific schools, related services, mainstreaming, extracurricular activities, and recreation. Discuss your wishes regarding the types of educational emphasis, i.e., vocational or academic, and name any specific programs, teachers, or related service providers that you prefer to be part of your child’s overall life plan.  

Benefits received: List the types of governmental benefits your child receives, including Medicaid, Medicare, Supplemental Security Income/Social Security Disability Insurance, Supplemental Nutrition Assistance Program (food stamps), and housing assistance. Detail the agencies’ contact information, identification numbers for your child’s case(s), and the recertification process for each benefit, including important dates and other reporting requirements.  

Employment: Describe the types of work and work environments your child may enjoy: open employment with supervision, a sheltered workshop, or an activity center. List any companies of which you are aware that provide employment in the community and may be of specific interest to your child.  

Residential environment: Describe your child’s living arrangements with family, friends, a group home, or another arrangement. If your child will be unable to continue living with these individuals after you stop being the primary contact for their care, describe what you consider to be the best alternative arrangements. For instance, explain whether you prefer that your child live in a group home or institution located in the same community, the preferred size of the institution, or that your child have a single room or roommate.  

Social environment: Mention the types of social activities your child enjoys, such as sports, dances, or movies. Indicate whether your child should be given spending money and, if so, how they have spent money in the past. The letter of intent also should note whether your child enjoys taking vacations and, if so, whether they have a favorite travelling companion.  

Religious affiliation: Specify your child’s religion and any local place of worship your family attends. List all local clergy who may be familiar with your child and your family. Describe your child’s religious education and indicate whether this is of interest to your child.  

Behavior management: Describe any current behavior management program that is having a positive impact on your child and discuss any other behavior management programs that were unsuccessful in the past.  

Final arrangements: List your desires for your child’s final arrangements, including whether you have planned for a funeral, cremation or burial, and any cemetery, monument, religious service, or specific clergy to officiate the proceeding.  

Other information: Include any other information that you believe will provide the best possible guidance to the person who assumes responsibility for caring for your child.  

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 it often is the first time parents actually envision their child with special needs navigating this world without them. 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 of a child with special needs, 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.  

Colin Meeks is the founder of Maryland Financial Advocates in Baltimore, Md., and a CERTIFIED FINANCIAL PLANNER™. He has been in the financial planning business since 1994 and started his own practice in 1998. He is active in the special needs community and does planning for families raising children with special needs, including autistic children.  

*Securities offered through LPL Financial. Member FINRA/SIPC  

**Please note that the opinions expressed in this article are those of the author and are not endorsed in any way by OAR.