Care Mapping for Children with Complex Conditions or Disabilities

A Care Map illustrates the needs and supports required for a child who has complex medical conditions or a disability in a visual format. Not only is it helpful in determining your child’s needs and how to meet them, but it also demonstrates all of the services your child requires. It can help you to develop appropriate care plans, improve your child’s life, and even assist in advocacy. After all, a picture of all that is required just to keep your child alive can be quite a vivid illustration!

Since a picture is worth a thousand words, let’s start with one. Here is a partial Care Map for my daughter Karuna. It is a snapshot of her needs when she was about 10 years old, with some details removed to protect privacy. Note that while I used Powerpoint to create her Care Map, it is also perfectly fine to draw it out. Since maps often require lots of frequent revising, I find using Powerpoint easier than starting over each time.

How to Make a Care Map

The center of a Care Map is always your child and family, as a Care Map by definition must be person-centered. You can simply print your child’s name or include a photo of your child or family. Remember that only you define family. Family does not have to only include relatives.

From the center of your Care Map you will want to draw out several domains that are important for your child. Note that these domains are likely to change over time and never need to be static. Your child may only need a few of them or may need lots, and feel free to combine several together, as I did above. Some sample domains you might want to include are:

• Medical or Health
• Home Care
• Community
• Support
• School or Education
• Work
• Housing
• Transportation
• Social Services
• Leisure or Social
• Behavioral or Developmental
• Therapies
• Advocacy
• Spiritual or Religious
• Friends or Family

If your child is able to participate in the Care Map process, please make sure to include him or her. You might be surprised to find that your child’s priorities are very different from your own!

Feel free to be creative with your care mapping. You can use different colors, either to sort by category, priority, or type of support. Some people use different shapes to represent different things, such as stick people for friends, buildings for hospital providers, or diamonds for supports. You might want to make more important care aspects larger or emphasize them with special colors. You may want to use additional connecting lines to show how things intersect between domains. Including photos or hand-drawn pictures within the map can also be helpful.

Know that your Care Map will never be 100% accurate, will never be done, and will never stop changing. Simply keep adapting it as you wish, adding or removing items as you go along. Over time it may change dramatically as your child’s needs change or he or she grows older. Concerns over school and medical care may transition to emphasize work, transportation, housing, or day programming. If your child has a progressive or life-limiting condition, you may shift more to home care and hospice. Your child will change and so should your Care Map.

You may also want to consider making multiple Care Maps. For some families, making separate maps for medical needs may be very helpful, while others may want to create a separate map specifically for all the people in their life, including friends, relatives, teachers, nurses, and so forth. Sometimes, just making a medical and diagnosis map can really help you understand what is going on medically with your child.

Finally, making a Care Map is not a competition to show how many people or organizations are involved in your child’s care. In fact, if you include them all, you may find your Care Map to be overwhelming! It should be a visual tool to help you and those involved in your child’s care to help support your child.

How to Use Your Care Map

Remember that first and foremost your Care Map is a tool to help your child and family, but it can also be instructive for those involved in your child’s care. Here are some ways you can use your Care Map:

• Identify gaps in your child’s care
• Identify duplication in your child’s care
• Share with medical professionals so they all know who/what is involved in your child’s care
• Share with other included individuals, such as schools, so they have a better understanding of your child’s needs
• Help to evaluate your child’s (and family’s) priorities
• Help to maximize community supports or other resources
• Identify ways to better coordinate varying aspects of your child’s care
• Help family and friends (and you!) understand the scope of your child’s needs

Making a Care Map doesn’t require anything beyond a sheet of paper and a few pens or markers. Give it a try and see how your child’s care looks all in one visual representation.