Hey everyone, welcome to the very first episode of Say It Louder, the podcast where disability voices rise, systems get changed, and real people get empowered. We are so glad that you're here. We created this podcast because we know what it feels like to sit in rooms where voices are ignored, dismissed, or misunderstood, especially when it comes to disability rights, services, and inclusion. We are part of the Raising Voices Coalition and we're here to build a space where caregivers, self advocates, parents, professionals and allies come together, speak truth, push back and change the story. This is your hub, your mic and your movement. And we're so excited you're here. My name is Courtney Burnett and I'm here with Brandy Kuhn and she actually started the Raising Voices Coalition long before I was a part of it. And so I want her to take us back to why she started it, how she came up with the name, and a little bit about what you guys can expect. Yeah. So I have a 10 year old son who has very complex disabilities. has cerebral palsy, epilepsy from a traumatic brain injury when he was six months old. And ever since then, I've been his advocate, his voice, whether that's in medical settings, in the school. And I've always learned to navigate his services and systems by living in multiple states. In 2019, 2020, we were living in Arizona. We were struggling with getting enough caregivers and I was just drowning because I couldn't use the degree I had achieved. I wasn't able to work outside the home. My husband was struggling to provide for us and it was really difficult on our marriage and my mental health. And in 2020, Arizona was one of the states that allowed parents to become paid caregivers during a temporary COVID era program. And we were able to utilize that program to really help stabilize our finances, help us start to pay off debt instead of living, you know, barely paycheck to paycheck. And it really empowered me to know that I was part of his care team and valued as such. And so about 10 months into that program, I was like, this is awesome. This is fixing so many issues that we were having prior to COVID. We were able to Courtney Burnett (02:25.144) fill the gaps of provider shortages. We were able to have parents become these paid providers and get training and help their kids thrive and succeed with the services that they needed. And it really was a launching point to me starting to ask questions of how policy works, how has legislation changed? is, you know, programs that are ingenuitive like this really added to state services so that they can be permanent and long-term? for families that need them. So for some of our listeners, this might be new to you. So like for how it works in Arizona where we're based, our children have Medicaid and then through Medicaid, our name, so it's ACCESS Arizona Long-Term Care, we have an individual service plan and on that service plan, our kids are assessed based off their needs, what they need based off of their disability. And then there's hours allocated for their care. But prior to 2020, if there was no caregivers, oftentimes parents and more often than not moms are the ones that fill in that gap. So we had these hours that could be paid to someone, but there was nobody to provide them. And so what happened during the pandemic is we were allowed to step in and do the hours that were already assessed for our children. We had to go through the same training background check. CPR and first aid, all the same training as any other caregiver in the state. So just wanted to make sure we clarified that because these were based off their needs and they're significant, meaning these children and adults cannot be left alone. They need constant supervision. So that was available, but prior to COVID in this program that came about through the COVID era. they would just go unused and the burden to provide the care and the fill in the gaps and try to keep your home running and everything would fall on the parents and a lot of times more so on the moms. It's been my experience. The moms fell that in. So that kind of takes us to, it got temporarily approved. So I just wanted to make sure our listeners were all up to speak because there's a lot of nuance. a lot of details in that. Yeah. And Courtney Burnett (04:46.764) Honestly, I got on a Facebook group and I was like, hey, does anyone else think this should be permanent? How could we do that? I had no idea about navigating policy change, what a state waiver was, how legislation works, any of those things. But I really wanted to see if this could become permanent because I knew it was blessing not only my family, but so many thousands of other families. And so I started asking questions. I started having Zoom calls with other parents who are advocates that I was aware of and saying, hey, what would you recommend I do? Who should I reach out to? Who should I ask questions of? And I did that probably 10 or 12 times. And I got some good names of people that worked for government agencies, started having meetings with them. I was told no a lot, told no a lot. And I would then take their nos back and I would do a lot of research. I would read a lot of policy. I tried to understand our state waiver. And through those processes, I was really able to challenge what these government employees were saying and telling me and really highlighting to them the crisis of the workforce that we were having of our providers in our state of Arizona. And so that ultimately was the reason that in 2023, Arizona added parents as paid caregivers to our state waiver. And in 2025, legislation was passed to fully fund that program and to make it permanent in our state statute. And that was a lot of hard work. So that was years in the making. that it is it correct to say that it took you and the group of advocates that got behind you three years of hard work to get that approved and then ultimately added to our waiver? 1000%. Yeah. And prior to this, just to reiterate, because I think this is the cornerstone of our mission at Raising Voices Coalition. And part of that is this podcast is empowering people who feel like, I don't know any of this stuff. I've never done this before. Neither did we. And yet through sheer grit, we're like, we're going to get this done. A lot of hard work, we were able to do that. And I think that's where Courtney Burnett (07:06.348) and a no fault to their own, but many states, it doesn't cross the finish line. Somebody starts it, but ultimately it doesn't get passed or it doesn't get through. And I think because it takes a lot of time and energy and the ability to be told no a thousand times and rise again. Yeah. And I would say there are hundreds of extremely strong advocates across this country who are working on similar programs or other initiatives. And what I draw strength on is disability history, disability movement is kind of built out of the ashes of people on the front lines, people with personal experiences saying, I need ADA, I need IDEA, I need these laws to be in place for me to have access to my world. And I'm going to show you what that means. It means, you know, a little girl named Judy crawling up the stairs of the U S Capitol and showing that there's not a ramp. to get her up to have equal access as her peers. And just because I don't know what I'm doing doesn't mean that I can't take action and I can't research and I can't build community. And so those are the things that I've done to make this successful and ensuring that I don't always have to have the right answer. I can ask, I can be humble, I can shift when that needs to take place, but ultimately, this movement that we've created in Arizona, caregivers of provider agencies, of self advocates has really created a powerful momentum that even in this last cycle, our legislature heard enough from our community that they fully funded our home and community based services in every single version of their budget that went from right wing to far left wing. There was proposed budgets on every spectrum. And every single time DDD was fully funded. And that was a huge testament to the movement our community has created. Because I don't think that was, we started off the legislative session with a declaration from a leader, a legislator, that Medicaid and DDD were going to get cut and that they had to be trimmed down. And we, through grassroots movement and organization, rallied our community. Courtney Burnett (09:34.278) and helped train them on the process of what does that look like to get involved? How does that go and speak? How do we write to them? And through this legislative process is when we decided like, we need to create a nonprofit and we need to realize that our advocacy work is not done. And it really, it's kind of a cliche, but it's like, this is just the beginning because There's still more work to be done for inclusion. And I do have a learning disability. I have an inkling. I grew up on an IEP. I went through the special education system. But a big part of being involved in Medicaid and waivers is through my daughter and being her voice. But we also really want So most of our experience is from motherhood and caregivers. Our goal is to have self advocates, other leaders in the disability community on the podcast, different experts sharing different experiences because our goal is that all voices will be heard and that we are just serving as a way to amplify those voices because at the end of the day, the ADA is great. IDA is wonderful. but those have not been updated in a really long time and they still are missing components to true inclusion. And I would say the other part of this is really reaching allies and people outside the disability community too, to really help them understand our needs and our programs so that they can demand that inclusion is done. And eventually I would love to have somebody on from. our town council where we got in our city, got some major changes done for inclusion. And the biggest outcome from that is a change in, what's the word, culture was the word I was trying to retrieve. I really feel like our town has embraced the culture of inclusivity and really analyzing what that means. And they made a commitment that no new parks or really anything in the city would be built that wasn't inclusive. Courtney Burnett (11:56.998) And we recently found out they kept that promise. So I hope to have somebody on and really talk about that journey. But this is what the podcast is about. And we're so excited you guys are here listening. And we hope that you will join us week after week and go on this journey of amplifying voices, creating change, and really believing that one voice can make a difference. It started out as you, right? And then through sharing your story, your mission, other caregivers, other agencies got on board and we really created something magical. mean, unstoppable. The legislators were like, who are these people? They are not going away. They are here every week. And they said both to our faces and to people around them that they had never seen a movement quite like this. And so We want to make them known that we're not going away and that each legislative session, we're going to be there watching. Is there anything else you want to add a little bit about the nonprofit work or a little bit more about the Raising Voices Coalition mission? I know we touched on it a little bit. Yeah, I would say as a disclaimer, everyone in the disability space is at a different capacity level. We each are able to engage at certain points and other times we just need to survive and take care of what's in our own family. And so as you listen to this, and if you're like, my gosh, I could never do that. I could never be this. I'm just really trying to figure out how to get my kids feeding tube to work. And it's not, and all these types of things. Know that that's okay. You don't have to be in the place that I am 10 years into diagnosis or Courtney is 20 years into diagnosis. It's something that will come if or when that is the right time for you and you can choose what that engagement looks like. So with raising voices coalition, that is our goal is for everyone to feel included and be able to engage in advocacy at their level and at their capacity. Whether that is, hey, I want to learn a little bit more about how my state waiver works. How do I navigate asking for services and those evaluations? Courtney Burnett (14:20.078) I really just need help with that type of advocacy. That's what we want to help with. If you're ready to jump in, you're like, I really have this fantastic idea for this state or national legislation. Okay. How can we connect you with the people to make that happen? And we really want to take this holistic look and do what ultimately is in the best interest of disabled individuals while including their caregivers, their provider agencies, their direct care workers. so that we can all be a team together as we advocate and create change. So this isn't just a one size fits all. We're hoping that this will serve a vast amount of people in their learning and education, and then taking that into action and movement in each person's capacity. That's awesome. I'm just so excited to see where this podcast goes. Another disclaimer, Brandy and I have never done this before. We're going to be imperfect. It's the reality. But we hope you can hear our voices and maybe just inspire that you can do amazing things, even if you've never done it, just like we've never hosted a podcast before. But we're here learning and growing. And we just invite you to be on that journey with us and share it with a friend who might enjoy this type of real, authentic podcast that you might not otherwise have. Awesome. So last time we're going to say it, but keep saying it louder and we're excited that you're here. Courtney Burnett (15:54.734) All right, all right. Oh, it's still going. Stop it.
