You have signed your last will and testament or revocable trust, created a special needs trust for your child with disabilities and selected an appropriate trustee to manage assets and make necessary trust distributions for your child’s care. Now you are done, correct? Not exactly, because ensuring your child’s financial future is only one facet of a comprehensive plan designed to care for your child with special needs.
An important companion piece to a special needs trust is a “letter of intent” or “letter of instruction.” This is a document that actually ensures your trustee knows your child’s functional abilities, routines, interests, and particular likes and dislikes. In addition to describing your special child, the letter of intent identifies specific doctors, services and resources that will help your child enjoy the highest level of independence and self-reliance. The document is a valuable tool that communicates knowledge only parents may know, including specific hopes and desires for their child’s future well being, to the very people who will be caring for the child after the parents no longer are able to do so. After all, who knows a child better than a parent?
The letter of intent serves as the foundation of any comprehensive life-plan for a child with special needs. By compiling as much information as possible, parents are equipping future care providers with the knowledge and insight needed to increase the likelihood of good choices in order to maximize the child’s quality of life and avoid the need for caregivers to learn by trial and error. A child also may participate in creating the letter of intent so that his or her own wishes are acknowledged and recorded.
A well thought out letter of intent often includes a medical component and a practical piece and, at a minimum, should contain the following:
- A family history, including where and when parents were born, raised, and married, as well as a description of siblings, grandparents, other relatives and special friends, with current contact information for all.
- Resources that provide assistance to persons with disabilities in your child’s local area, including public agencies, churches, individuals and private organizations.
- Residential care needs for your child, including past and present accommodations and expected future needs.
- Educational information, including past records, current enrollment, specialty teachers, future educational goals, special interests and talents, extra-curricular activities, as well as types of educational emphasis, for example, vocational, academic or communication.
- Employment guidance, including the work your child may enjoy, sheltered workshops, activity centers and companies that provide employment in the community which may be of interest to your child.
- Social, behavioral and personal relationships that are important to your family and child, including relatives, special friends, teachers and care providers.
- Social and recreational activities your child enjoys, including sports, dance, music or movies. Parents also might want to mention whether their child should have his or her own spending money.
- A typical day in the life of your child, including his or her favorite foods, music, books, television shows and routines.
- Medical information, including current doctors, therapists, clinics, hospitals, current medications and therapies. The parents should explain how the medications are given and for what purpose and describe medications that have not worked in the past.
- Parents’ final expression of love, hope and desires for their child.
Parents should not be inhibited when writing a letter of intent, and a clear, conversational voice that avoids legalese is best. In addition, the document should be reviewed periodically to reflect any changes. Below is an excerpt from an actual letter of intent, published with a client’s permission, to help other families with their own drafting:
“…Bill can dress himself, but needs some help picking an appropriate outfit for the weather. Once his clothes are laid out he can dress himself. May need some help with buttons or other fasteners. He prefers pullover shirts and t-shirts rather than shirts with buttons. He prefers athletic pants that he can pull up such as track pants rather than jeans or slacks. He can put on his own socks. He struggles with tying shoes and we have switched exclusively to zip up or pull-on shoes. He is able to zip his own coat, but may need help at times. Using zippers, snaps and buttons are a continuous goal for him to work on manipulating them independently.
He needs to be reminded to brush his teeth and wipe his face, but can do these tasks independently both in the morning and at night. He hates mint toothpaste and uses the kids’ flavors. Right now he is using Kids Crest- Sparkle Fun flavor. He hates getting a lot of water on his face and needs a washcloth and wipes all over his face and then rinses with a damp cloth. He can do all this himself, but hates it and needs supervision and verbal prompts/encouragement. Bill is doing well with taking showers. It has been a long process. He can wash himself fairly well with the washcloth and can now wash his own hair. He continues to need someone checking in on him and providing verbal cues to wash and rinse his hair well. He gets upset if a lot of water goes on his face so rinsing his hair is an issue…”
Although writing a letter of intent may be an emotional experience, once the process is complete, parents may rest easier knowing they have left a detailed road map for later care providers and trustees to ensure the highest quality of life for their child and the fewest interruptions in his or her daily routine.
One Special Needs Alliance member, Reginald Turnbull of Missouri, offers a sample letter of intent online in blank for your use. Feel free to use it, modify it or simply view it as inspiration for your own letter of intent.