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It is important for parents of children with special needs to document information about their child.

As parents, we forget that so much of the information about our children rests in our heads and not on paper. It is very important to document information about your disabled child. This can be done with a special needs planning document called a Letter of Intent.

A Letter of Intent is a document which provides key information about a loved one with a disability. Typically, it is written by a parent (or guardian) and contains information about a disabled son or daughter’s history, current status, and hopes and dreams of both the son or daughter and the parents. A Letter of Intent is not a legal document and hiring a lawyer is not necessary. As a matter of fact, the best person to prepare the document is the person or persons who know the individual with a disability the best.

Purpose of Letter of Intent
Why is writing a Letter of Intent important? As parents of children with special needs, we keep an immense amount of information about our children in our heads. We need to write it down.
Imagine what it would be like for school personnel to keep important IEP information about your son or daughter in their heads rather than writing it down. The information that a parent knows about their child is tenfold, yet, few will realize how important it is to write down key information about their child.

An IEP for Life
I like to think of a Letter of Intent as an IEP for life rather than a static document that doesn’t encourage continued growth and personal development. My personal preference for organizing a Letter of Intent is to create a document, which I update every year on my daughter’s birthday (or more often if necessary). Once updated, I print the document and put it in a binder with other important information. It is important to organize your document to read more like a guide (with headings or tabs) than a book so that information sought can be found quickly.

Here are some suggestions of what your document could include:

  •  Emergency contact info, including future guardian
  •  Your child’s strengths
  •  Your child’s wishes for his or her future
  •  Your wishes for your child’s future
  •  Your child’s background concerning his or her disability. I like to point to my daughter’s IEP, (i.e. see page 3 of IEP dated___) which provides a good summary
  •  Health & Safety, including fitness and dietary issues
  •  List of evaluations/testing completed and when. These will become even more important as your child gets older
  •  Location of other important documents
  •  Typical Day
  •  Specific Areas of Support: Bathing & Hygiene, Getting dressed Behavior, etc. I like to keep old entries to show my daughter’s progress as I want future caretakers to recognize the importance of continued teaching and goal setting
  •  Quality of Life
  •  Family traditions, both formal and informal traditions (i.e. apple picking at favorite orchard)
  •  Favorite activities
  •  Places your child likes to go
  •  People he or she likes to visit and when
  •  Down time activities and relaxation
  •  The future: housing preferences, college, continued learning and enrichment
  •  Important contact information. Think of professionals, individuals and organizations that you may contact throughout the year

Get Started!
The most obvious benefit of a Letter of Intent is to provide guidance for future caregivers and others in your child’s future or current circle of support. The Letter of Intent not only helps a future caregiver hit the ground running, but can also help you as a parent begin the process of thinking about the future and organizing key documents.
This blog post was originally written by Claudia Pringles for the Vermont Family Network.