Telling Our Stories

Why is it important?

Only your closest friends really “get it.”  Parenting a child or loved one with intellectual and/or developmental disabilities is personal to the core.  Your story cannot be shared in sound-bites or headlines. It needs to be told and told in a way that opens the door to your world, that of your child and your family.  There is no perfect way to introduce your story, so please express yourself in your own way. 

We have parents in our network that can help you and will offer you prompts if you like.  Additionally, there are many Google sites which offer templates.  For our purposes, we want  to move opinion.  What has been the economic impact on your family without a waiver?  What would be your hopes and dreams with a waiver?  What do you most fear without more services going forward?  If you do have a waiver, what has been the most important change for you?

How do we leverage stories in advocacy?

We know that while a member of the General Assembly might be interested in your story, they will hear legitimate stories of desperation and need all day long.  What can make yours stick and how can we help them "get it?" 

  1. One way is to personalize it in their context, their family, their community. 
  2. Another is to tell it in concert with a group of people who have similar experiences, in your county, MCO, or across this network. 
  3. A third way is to share the story with a suggestion of how services for your loved one can be easily accomplished by legislation.  You can suggest options for them which demonstrate your understanding of their difficult roles. 
  4. And still another way is to introduce them to the I/DD legislative caucus, to meet colleagues who already grasp the Waiver and Registry challenges.  

When we tell our story to a neighbor, an editor or a legislator, we offer characters of unique strength and perseverance. For most of us, those superlatives come from sacrifice, fear, and living daily with the unknown and unexpected.  The power of your story is more than one of economics and legislation, but of your hopes and dreams for the potential that exists for your guardian, your child or your family with support.  Please consider sharing your story today and together we will create a collective story that shines a light on the lost developmental opportunities for 14,000 North Carolinians. Your story and the impact on your family as you wait MATTERS! 

Soon we will have some video examples from professionals in the disability community who can show all of us ways to verbalize and write our stories with impact. Stay tuned!

Feel free to draft a story and ask for editing suggestions from our team of parent-writers.  Let us know if you would like it posted on our site email to [email protected] The important thing – keep telling your story!

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  • Deborah Woolard
    commented 2021-11-12 12:12:59 -0500
    Please consider sharing your stories about how a waiver has enriched your life or how it could. You can videotape it or write it. Pictures help. The stories can come from either self advocates or families.