Advocating for Children with Special health Care Needs  

About This Topic

Madison Capitol
Welcome to the lesson on legislative advocacy. The purpose of this lesson is to provide you with the knowledge and skills to advocate effectively for children with special health care needs (CSHCN). We will begin with an overview of what it means to advocate and discuss the various types of advocacy. We will then narrow our focus to legislative (policy) advocacy and address a number of approaches and techniques for effective advocacy. There are a variety of ways to be an advocate, although most groups who advocate for children use volunteers and professionals to get their message to legislators. Legislative leaders may not be familiar with how children are faring in their states and may not be well-informed about the policies and programs that work, or their impact on children. Legislators need clear, accurate information regarding children's issues.

It is important to advocate for CSHCN because they are a unique group of children. It is estimated that about 18% of children have special health care needs. This group of children needs to be identified because they use more medical care and have highly specialized needs. They need access to a variety of providers to meet their needs. Care often should be coordinated across many systems such as medical, school, social services, and across multiple sources of funding. Families and professionals who work with this group of children know best what does and does not work well for this population.

Advocacy covers a broad range of activities in which most people can participate. There are several different types of advocacy. Self-advocacy means speaking up for yourself or your family. Case advocacy means helping someone deal with a complex bureaucratic problem. Public advocacy simply is community education. Administrative advocacy means responding to a call for public comment when government proposes a change. Legislative or policy advocacy is almost anything done to influence legislators, including voting, writing letters, emailing, and calling legislators. Many of these activities are things that people do everyday for themselves, for their families, and for their friends. Advocacy simply involves speaking up and taking advantage of opportunities.

If you have ever spoken up on behalf of yourself or someone you care about, you have been an advocate. There is a mystique that surrounds advocacy -- that you have to be an expert. This is not true. Advocacy is like anything else; the more you do it, the easier it gets. Practice makes perfect.

What you will learn

By the end of this topic, you should:

  • Recognize the importance of advocating for CSHCN.
  • Explain legislative advocacy and differentiate different types of advocacy.

To get the most out of this lesson

We recommend the following learning strategies:

  • We suggest that you go to Learning Activity #1 and do the self-assessment before you read the case study or listen to the lecture. This assessment will set the stage for the rest of the lesson. You can consider these questions as you read the case study, listen to the lecture and complete the rest of the learning activities.