Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy


How to be an advocate

As parents to children with special needs, we have a lot of roles: caregiver, nurturer, juggler

But one of the most important ones is advocate.

We advocate for our children at school, with medical providers, with therapists, with insurance companies and sometimes with the decision makers in our local, state and federal governments. 

Advocacy is so important for our kids for so many reasons, especially when they have added healthcare and educational needs, said Betsy Pilon, president of president of Hope for HIE. 
"There are many inequities that exist and by working on challenging and changing those inequities, the goal is to prevent others from having to advocate for the same changes in the future, to protect the health and safety of fragile or potentially marginalized populations. Being informed on key issues that relate to your specific situation, and talking to others who are potentially affected by the same issues of inequity, builds stronger communities," Betsy said. 
Betsy has been advocating for her son Max and so many of his friends in a multitude of ways, reaching out to state and federal lawmakers and her son's school. 
And she wants to help other parents navigate the system. Here's some tips on how:
How do you decide what causes to speak out about. Where can I have the most impact?
When you are looking at any governmental laws, policies or regulations at any level (local, state or federal) that may negatively impact you or your family, it may be an opportunity where advocacy is necessary to make needed change, to bring awareness to others, or simply to tell your story to decision makers and key stakeholders.
Depending on the issue, local and state levels can be the best starting point. There are so many resources available to learn more about the issues at hand.
How do I find out who to contact?
Depending on the issue, there are different contacts - there are legislators, policy watchdogs, nonprofit organizations, etc.
What is the best method to communicate with lawmakers?
Elected officials in a representative government should have a variety of avenues for their constituents to give them feedback. Phone calls, emails, attending town halls, or making appointments for in-person meetings are all options. 
How can I be sure to get my point across?
You want to have a specific plan and end goal in mind for whatever you are advocating for. You need to clearly articulate those points without excess emotion. Storytelling is vital for context.  
Think about the long-term goal and building relationships with the people you are communicating with. 
Is follow up important? What should I do?
Yes. Thanking legislators and policy makers for their time and attention to the issues important to you certainly is a key way to build a relationship. Some form of correspondence like a letter or email will do.
For more information, check out this resource: http://www.hopeforhie.org/take_action

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