Telling Your Story

September 08, 2022

NC Waiver Action Team, founded by two families in NC, is now a strong grassroots organization in NC for the disability community. Here is their story, and learn why it's important to share yours.

Video Transcript

What is the NC Waiver Action Team?

My name is Deborah Woolard, a member of the North Carolina Waiver Action Team. Because both of our families were known locally to be active in groups and committees in the disability field, families would ask us to meet with them and they'd share their stories of desperation while waiting for the waivers. We weren't content to say there's nothing we can do to help. So we got together and formed our two family team. We started both a website and a facebook so we could stay connected to families who had reached out to us. We presently have 600 families from 60 counties in North Carolina registered on our website and see waiver action team dot com. Our facebook page we started so we could share state and national information related to I/ D. D. Issues. We strive to keep families updated regarding important changes, upcoming events and opportunities for advocacy.

What is the Innovations Waiver and the Registry of Unmet Needs - and how do these relate to you personally?

Sara Potter: Hi, my name is Sarah potter. I'm a parent advocate and a member of the north Carolina waiver action team. I'm going to briefly describe what The innovations waiver is and the registry of Unmet Needs. The North Carolina innovations waiver is a 90 15 C. Medicaid, home and community based service waiver designed to help meet the needs of individuals with intellectual or developmental disabilities who would prefer to get long term care services in their home or community rather than an institutional setting. The services are managed by the L M E M C. O. S, which is local management entity or managed care organization. The individuals work with a team of their staff to develop a person centered care plan of care to get the services and supports that they need. It's done by receiving innovations waiver slot which is has an annual budget of $135,000 um. The average being closer to 65 or 75,000 as the average. Um There are a limited number of slots in north Carolina and the number is determined by the General Assembly. Um Right now they're uh estimated to be about 15,000 people on the wait list to qualify the individual needs to meet the requirements for an intermediate care facility level of care and the M. C. O. Helps do the assessment you need to get on the registry of unmet needs better known as the RUN or the wait list because there is such a great demand and it can take years to get a slot. It's critical to be on the wait list because it's first come first serve so you can end up waiting for years. Um This year the General Assembly budgeted 1000 additional slots so um it'll take a long time to get through 15,000 slots and more people are added every day. Um Personally my son has been on the wait list for about 13 years. There is a new waiver amendment likely coming soon called the 1915. I it will be an entitlement and will replace the three services meet the need and see initiative was funded to help keep families informed as to what services are available and to assist them with navigating the system and to gather collective voices and their stories to hopefully impact future policies and work on solutions to meet the needs of N. C. Thank you.

Why is it important for people with I/DD and their families to tell stories about their lived experience?

Matt Potter: Hi, I'm Matthew potter. Um, I am a resident of county. I am a recipient of some services, though I am on the registry of unmet needs, which you'll learn a little bit more about later and also later on today. Um, I am a man in a wheelchair in case that's not obvious in the video. I haven't had cerebral palsy as well. Uh, I am a member of the north Carolina waiver action team as well as adjunct faculty at Mount Holyoke College in University in the disability support professional training program.

Matt Potter: it's absolutely vital for people, that idea and their families to tell stories about their lived experience. Uh, there's a lot of reasons for that. But the most important reason, um, that really ties into every other reason is that this whole issue with the registry amendment needs, and a lot of the issues surrounding people with I DD and their families struggling and being discriminated against as much as they are. It all comes down to the fact that, um, it's a people thing, right? And there's no better way to begin to understand somebody, uh, than to tell their story. And so if you're able to tell your story in a way that can resonate with somebody, then you can do anything from making a new friend to opening up somebody's eyes to getting through to a legislator about a, you know, new bill or a new source of funding that wasn't there before, or, uh, slots to, um, account for the registry amendment needs or even something as a world changing as universal healthcare for all, you know? So it's important because at every level of human connection, um, storytelling is vital and human connection is vital at every level of making change

What do we need you to do now?

bill donohue: you've met Deb who handles our waiver action team website, Sarah the facebook and man who does the heavy lifting as a self advocate. My job is an easy one to encourage you to take, take this experience today and do something with it. They told you a little bit about us and now it's your turn to share something about you. If you made the trip to Boone today to be here live, there was a reason and it's now part of your story and I hope you'll take the here and share and act portion of your experience and add to your story. You're now part of ground zero for meet the needs and see initiative. We are the baseline for a growing statewide story. Over the next few years we have a big job ahead of us collectively our stories are about triumph and courage. But especially right now our story is about need and north Carolina needs a big change in the way it serves people with disabilities. When we started the waiver action team three years ago, one of the biggest needs we had was the weight 14,000 people were waiting. But of course it's well over 15,000 now and the authority grows more urgent. Most people wait for 10 years in North Carolina for the home and community-based services that Sarah spoke of. But now we wait even longer. Here's what our team asks of you today. If you're in Boone shake every hand, meet every person around you tell your story. Listen hard to the other stories that you hear and imagine a network growing within you, whether you're writing your story or telling it to your neighbor, imagine how each story will be different. Which person gets it and who was new to the lived experience we all share. If you meet the mayor on the street or someone handing out an election flyer or somebody at church, tell your story. That's the act part of today. Listen closely to the complicated policy changes that are in front of us, gather up the resources and most important, tell us your story. Tell it to your newspaper. Put it on social media, send us a copy at Labor Action Team. Send it to meet the need and see build your own here share act team dot com. But most importantly keep telling your story. It's too long to wait, keep telling your story.

Produced with Vocal Video