top of page

Advocacy for NICU Families

NICU parents are often told, “You are your child’s best advocate”, but we aren’t really told what that means, or how we can be that “best” advocate.  We can feel powerless when our babies are hospitalized, and disadvantaged because we don’t understand all the medical realities our babies are facing.  We are afraid to speak up and/or don’t know what to say or how to say it.

The word “advocacy” brings up strong reactions in people.  Some people think advocacy is an adversarial process that leads to arguments and tension.  The reality is, when advocacy is done well, it builds and strengthens relationships.

In collaboration with advocacy expert Ryan Clarke of Advocacy Solutions, we have developed some resources for NICU families and caregivers.  We hope that these resources will teach you more about advocacy, how to be your child’s voice, how to build relationships through advocacy, and how you can take the lessons you learn in the NICU and use them to support your family in the years to come.  Ryan’s expertise is in the world of government, but his core advocacy lessons apply to any environment, from the personal to the institutional.

Watch Ryan’s Presentation: Effective Advocacy Strategies


Ryan’s Top Ten Advocacy Tips

  1. Identify your issue

    • You may have many areas of concern, but it’s best to stay focused by picking a single issue and moving forward with it.

  2. Develop your key messages

    • You need to determine what you want to communicate about your issue. Your key messages (ideally three in total) should be clear, compelling, concise and consistent. 

  3. Know your core facts

    • Your factual knowledge of your issue and your key messages will establish your credibility. While you don’t need to know everything, being able to articulate a series of basic facts is essential.

  4. Practice your story

    • Your personal story, as it relates to your issue, will serve as a foundation piece for any advocacy effort. Write it out and practice telling it, covering the important points in two to three minutes. 

  5. Build impeccable relationships

    • Advocacy is grounded in asking decision-makers to do something that will move your issue forward. Look for opportunities to connect with those who can help affect change on your behalf. 

  6. Design your advocacy tools

    • Your tools are the means of delivering your key messages. They include meetings, emails, social media, websites, and petitions. Use a combination of these to put your issue forward. 

  7. Decide on your one “ask”

    • You need to ask the person with whom you’re communicating to do something to affect change. This one “ask” must be very focused, achievable and tangible. 

  8. Believe that you can affect change

    • You can do advocacy. If you believe that you can make a difference by standing up and saying something, then you’ve jumped the first hurdle and are well on your way. 

  9. Start now

    • There are many issues that may affect you or your family or a group that you’re a part of … and by starting right away to work on these issues, you’ll bring about change more quickly. 

  10. Don’t ever give up

    • If you stop trying to bring about change, then change is left to chance. You have the power to affect the change you need. Your determination, persistence and willingness to engage in advocacy will bring about success.

bottom of page