Well-Being Ep. 44: Advocacy in Action - Stories from the Frontline

Learn about the power of advocacy! In this episode, we sit down with Anthony Kukura, Manager of Advocacy and Government Affairs at Boundless, Teresa Lampl, CEO of The Ohio Council of Behavioral Health and Family Services Providers, and Marci Straughter, a passionate self-advocate. With our host, Scott Light, we dive into how grassroot efforts and legislative actions are making a significant impact on communities, especially in the realms of mental health, disability services and public policy. Prepare for inspiring stories and a deeper understanding of the transformative impact of dedicated individuals working together for change.

Transcript

Scott Light: 0:03

Okay, welcome everyone. We're going to begin by asking a quick question to all of our guests. So, Teresa, would you start us off with this: What does the word advocacy mean to you?

Teresa Lampl: 0:15

To me, advocacy means making change happen by ordinary people for the greater good.

Scott Light: 0:21

I like it. Anthony?

Anthony Kukura: 0:22

I would say it's bringing awareness to an issue or problem while pushing for a solution.

Scott Light: 0:28

Okay. Marci?

Marci Straughter: 0:31

Advocacy is helping people to speak up for themselves and learn their rights and responsibilities and networking and just getting to know each other and helping people learn about different things in the advocacy community.

Scott Light: 0:48

Okay. Well, we are out of the gate with some great definitions. I can't wait to follow up with all of you on all of that. Welcome everyone to Well-Being, a podcast brought to you by Boundless. Boundless is a nonprofit that provides residential support, autism services, primary health care, day programs, counseling and a whole lot more to children and adults. Our mission is to build a world that realizes the boundless potential of all people. I'm your host, Scott Light. So, you heard their voices very briefly there. Let me properly introduce you to our guests today. Anthony Kukura is Manager of Advocacy and Government Affairs here at Boundless. Teresa Lampl is CEO of The Ohio Council of Behavioral Health and Family Services Providers. And Marci Straughter is here as well; she serves on a couple of boards of directors, and she received services from the good folks here at Boundless. Welcome to all of you. Thank you.

Teresa Lampl: 1:48

Thank you.

Anthony Kukura: 1:49

So,we're talking advocacy this month, and why it is so so important. Advocacy leads to awareness, to education, to involvement, to discussion and eventual change. And that change can come in many forms. It can be in perception, it can be in verbiage, it can be in a town hall discussion or it can be changes to state and federal law. It is just huge. Anthony, why don't you start us off here? If you would, describe the advocacy efforts that you lead here at Boundless? Sure. So, Boundless engages in advocacy work at the local, state and national level. Given our just large territory that we cover, at the moment, we really have, you know, numerous counties, municipalities, Statehouse districts and congressional districts that we provide services in. We're in about two-thirds of the current Statehouse districts, we're at about 90% of our congressional districts, and then just dozens and dozens and dozens of counties and cities. So, there really are just a lot of different pieces that we're looking at at any particular time. At the local level, we could be engaged in something as, you know, small as a local zoning issue for one of the service settings that we may provide, all the way to advocating for federal legislation in Washington.Teresa and I were actually just there last week discussing a few behavioral health priorities that the organization has. But I would say the majority of our advocacy work is centered around the state level. The majority of our funding here at Boundless does come from some sort of state funding. And it's critical that we really follow that process with a lot of that coming from the state budget. So that's really where the vast majority of that advocacy work is focused on.

Scott Light: 3:33

Okay, Teresa, let me come to you. And maybe I'll provide a little bit of a baseline and of course I want you to fill in a lot of details here. For the Ohio Council, as your organization is often called, and also that's your website, the Ohio Council is a statewide trade and advocacy association representing more than 165 private businesses providing community-based prevention, substance use, mental health and family services throughout Ohio. So, if you would expand upon that, of course, tell our listeners more about the important work that all of you are doing at the Ohio

Unknown: 4:05

Sure, thank you. So, we are a trade and advocacy Council. organization. So, we're a member organization. All of our members are community providers that deliver mental health, substance use or family services across the state of Ohio. We know that our members provide about 70 to 75% of the covered behavioral health services delivered statewide. A lot of our work is focused at the state level as well as the national level. And it's, you know, similar to what Anthony said, we focus a lot on funding because, you know, one of the primary rules is that which gets paid for happens. So, in order to make sure that there's a full continuum of services available for all families in Ohio, all individuals in Ohio, our primary goal is making sure that there's resources available to support individuals. But we also work on a lot of other policy and regulatory issues to make sure that organizations have what they need to be able to deliver services. One of the fundamental values of the Ohio Council and it's, it's frankly, why I came to the organization 20 years ago, is that if you do what's right for the people receiving services, you're doing what's right for the provider. So, we know that at the heart of it, it's about making sure that the work we do is is person-centered. And that we're doing things in a regulatory and an administrative and legislative environment that allows providers to serve people because at the end of the day, that's what we want to do. We want people to be healthy and well, and the only way to do that is to make sure that there are services available.

Scott Light: 5:38

Well, I tell you what, that perfectly tees up my question to Marci because speaking of services and organizations and being people-centered, that is certainly the mission - and missions plural - of everything that happens here on the Boundless campus. Marci, what types of services do you receive from Boundless?

Marci Straughter: 5:56

I receive the psychologist services and I really like it. I do it online. I've been doing it for a couple of months now with Boundless online and I like the way how it is. And I like it how it uses like the technology and stuff because I'm an Ohio Tech Ambassador. And I use like technologies and stuff to feel independent in my home. So, to use that along with using the counseling has made it really important for me.

Scott Light: 6:30

Alright. So, Ohio Tech Ambassador, that sounds super official. Tell us about that.

Marci Straughter: 6:34

Okay, so I've been an Ohio Tech Ambassador, I

Scott Light: 6:37

Oh, that's great. was one of the original ones, since 2020. And we train people

Marci Straughter: 6:43

As a matter of fact, Tech Ambassdor left about with disabilities how to work assistive technology and teach them about remote support. Like I have an Alexa, I have a Med Minder, I have a smart door lock, I have a smart thermostat, a smart smoke detector and I also have a Facebook Portal. Now, I also have remote support. So, I have a camera that only looks into my living room and my kitchen. And so my remote support can see that. And then with my Facebook Portal and on my cell phone I can talk to them because they have a 24-hour service. And like if I get bored, they can help me with my speeches that I do for public speaking. We play games, we can just talk. Like this morning they will they woke me up, and then we were talking until I got ready because I was a little bored. So I waited until my other staff got ready. an hour ago. I just got done doing a presentation online.

Scott Light: 8:00

That's awesome. That's great. Anthony, you were talking about areas where Boundless is focused. And I think you said, I was taking notes as you were speaking, a good amount of of focus at the state level. So, what issues are you watching and possibly advocating for on behalf of Boundless right now at the state level?

Anthony Kukura: 8:21

Sure. So, really, the biggest priority in front of us is thinking about how do we build on the success of the last budget? We really received a significant and frankly long overdue investment in our service system. But we were very successful in the priorities that we advocated for last time. And what we've heard from legislators, you know, since then is what was really part of that success is there was there was tremendous consistency of the message we're trying to push. You had the same message being said by the IDD community, by the behavioral health community, by other health and human services entities engaged in that process. And we have been told that numerous times. And really, I think as we look to next time, we have to remember that as we go forward is whatever message that we, you know, decide on for the next budget cycle, it needs to be something that everybody can agree to and everybody can can advocate for collectively. Right now, we're still kind of in the phases of what that ask might look like. We're engaged in conversations with trade organizations, other providers across the state of really what what that ask might look like. And kind of the two biggest pieces of that are how do we continue to get a sustainable investment in the workforce? While also let's look to the future and look for ways that we can be more innovative and look for technologies that can provide just a little bit better services for the people that we serve for the future. Really, this last budget has given us the first opportunity to do that in a really long time. We have been in such a survival mode that we haven't really had time to think about what does the future look like? What should we be doing? What can we really build on? So, I think that's really critical for the way forward right now.

Teresa Lampl: 10:06

The investment we saw in this last budget was nothing short of historic. I've been doing policy work, you know, for 20 years, I've been in behavioral health for 30 and I've never seen an investment as large and as sizable as we saw.

Scott Light: 10:19

Really?

Teresa Lampl: 10:20

In this previous budget in the home and community-based services space, which includes, you know, serving folks with intellectual and developmental disabilities, behavioral health and those with physical disabilities needing home care. So I do think consistency of message was absolutely essential. In some ways, we got a little bit sideways, because we were saying$20 an hour and we were saying 20%. And so it's a challenge for making sure but at the end of the day, we knew we needed more investment just to stabilize the workforce. So going forward, you know, we're, we're at a point where we're trying to measure the impact of that investment, so that we can demonstrate that we took those dollars and actually did put them, invest them in the human infrastructure into the people caring for people so that we're actually able to deliver more services because we know there's going to be those questions. We know we need to continue to build a workforce. We have significant shortages of people available to provide care. And so that's something we're already starting to work on in terms of what is the economic impact that we have of being able to meet families' needs, being able to care for people so that family members who need to work and who contribute to the economy are able to do that work? And then we know from that we have to be able to stand up and build out a full continuum of services. And when I say that, that starts with good preventative services, early identification, and recognition. And that starting both with young people, starting with, you know, in early childhood and working with parents, but also being able to intervene at that preventative experience early, early in an any type of experience where somebody's, all of a sudden, not feeling well. So how do we engage before we're in a crisis? But then also critically important for our work right now is building out a crisis continuum so that when somebody is experiencing a crisis, however they define that, kind of like you were talking about with your [Marci] remote monitoring, you have somebody that you can talk to, do we have someone to call? Do we have somewhere to go or someone to come to help and someplace to go? So, making sure we have that crisis continuum and then that we're building the services around people to help them live and be healthy and well in the community where they are. So a lot of it is about meeting people where they are and using what we can to innovate the way we engage people, and the way that we connect them with access to care. Knowing full well, the health care service is usually a small part of what makes people healthy and well. It's important to keeping people healthy. I mean, we're talking about, you know, brain health many times, you know, and so how do we make sure the brain is healthy, so that people can live their best lives?

Scott Light: 13:10

And Marci, in that same vein, what types of services do, do you still need and want? What would you like to see?

Marci Straughter: 13:19

Well, I, I have all the services I want. I just recently, about two years ago, I am the first individual on the Franklin County Board of DD and one thing that I bring to the table is like, how a person with a disability feels because no one on the board other people have disabilities, their parents, are in the disability field. But I tell them like how it is. I say I bring the flavor into the mix. And also advocacy also starts with...a couple of times I have went to Washington, DC to advocate on Capitol Hill. And for one of, I went a couple of months ago, and one of the things I advocated for was the provider crisis because it was hard during COVID. I had to use remote supports when I didn't have staff and then also the SSI stuff that's going around and we wanted more money. And then also is we wanted, we wanted to work and have and have jobs and they wanted to pay us less with the SSI and it cuts our checks. So we advocated there too. And also, I advocated at The Ohio State House for the Legislative Advocacy Day, for DD Awareness Day, and I've advocated on that and went to talk to legislators and things like that. So that's good in advocacy. If people want, self-advocates want to get their voices heard with the government level, try going to wash-, see if a group that you're involved in is going to Washington, DC to advocate or go to the Advocacy Day. That usually happens in March because your voice can get heard. And I think that's really important. It tells me a lot, I go there with my friends, we know what we got to say. And I always say lets stir it up and keep it cooking. And we get the job done. And we, and we have them to listen to us. And they have listened to us. And matter of fact, I met Senator Sherrod Brown in Washington, DC and got to talk to him. And then he sent me a letter to my house and saying, and say, maybe I'll see you at our favorite ice cream place. So that was really cool. So going to Washington and going to the State House. And I also go to Columbus City Council. My cousin is Shannon Hardin, the president. And we, I went there to talk about DD Awareness Day, me and my friend. And we also went there to talk about technology because the technology, they had Technology Day, and they gave us certificates. So it's good to advocate on the state level.

Scott Light: 16:50

You got one-on-one time with a US senator with Sherrod Brown. What'd you tell him?

Marci Straughter: 16:56

I told him back then, when I went I said, about providers that we we need more, and we need to help them. And also living situations for people with disabilities and just advocacy and them to get to know us. And by him talking one-on-one with me and my friends and sending back letters to us, that was very magical. Because there's not a lot of senators and legislators that would do that.

Scott Light: 17:35

They took the time to listen, right?

Marci Straughter: 17:37

Yeah. And like one of the guys that I went to go see, have you ever heard of the it was the day you went to Washington, like for a day, it was called the fly-in. And I went with some self-advocates and people in the disability field. And we got to go on Capitol Hill, and I forget the Congressman's name, but he lived in my district. And he said,"Thank you for coming." So hearing that from people in Washington has really helped.

Scott Light: 18:13

Teresa, Anthony, in that same vein to both of you, what are you watching at the national level? I think you've got somebody who can maybe lead your next trip in terms of Marci here. Well, I was just gonna say Marci, you're invited anytime we go to DC. Interestingly enough, Anthony and I were just in Washington, DC last week, with the National Council for Mental Well Being as part of their annual Hill Day event. So we had the opportunity to meet with, we had a delegation of about 15, folks from Ohio, and we met with 14 of Ohio's congressional delegation, including both Senators offices, because we were just there, you know, the the first thing we were talking about, and you know, I hate that it sounds like all we're talking about is money, but it was appropriations. But you know, the funding is so critically important to making sure that we can provide services to people. And if you understand the most important resource we have in the provider community is the people that we employ. And so we need to have a very robust and vibrant workforce so that we can meet people's needs and we can provide care. So a lot of what we were talking about is, you know, we need the federal government to pass a budget because the federal budget is what sends dollars to the states, and then the state's allocate those down to the local resources, and then that gets to providers as well. And so that's really the first point that we were talking about was, you know, critically important to appropriations. The next thing we talked about was was maintaining the Medicaid program as it is, you know. Right now, it's an entitlement program, which means people who are eligible for the service can get the things that they need, they're entitled to them. And so maintaining that as an entitlement is critically important because if you block grant it then you put a cap on The amount of money which then means you're going to change the way the program operates. And you have to start picking winners and losers in terms of what services can get provided. So that's been, you know, a critically important point. Workforce is always the big issue, you know, can we do more to create more access? Can we create more opportunities for people to come in these fields, you know, loan forgiveness opportunities, tuition reimbursement? Really trying to make it attractive for folks to come in and do work in the home and community based space. It's critically important work and it's so personal and powerful. Yet, we don't value it from a profession, professional standpoint, and we don't necessarily pay as well as other positions. And as the economy keeps changing, and to a service industry, you know, this was the challenge during COVID is, we were no longer competing with other healthcare entities, I was now competing with Amazon, and Walmart, and, you know, Taco Bell. And so that became that's, that's another big issue that at the federal level we're working on. And I'd be remiss if I didn't mention the importance of insurance parity, because I think that's another piece where, you know, if you have Medicaid, you can get access to care if you have a commercial insurance, you know, through any of the big typical insurance companies, and you need services, they may not always be available to you. And so if you have a physical health condition, you know, you break your arm, you have a heart disease, you develop cancer, you can get care. But if you have, you know, a developmental disability, you have a mental health condition, you have substance use, maybe you can get that care, but maybe not. And so, you know, we need more enforcement to make sure that, you know, behavioral health and developmental issues are treated on par with every other physical health condition, the brain health is essential health, and it's treated exactly like any other organ in the body. Money is huge. Here, you mentioned Taco Bell, I'll come back to that. In this sense, there's a friend of a friend and she worked in the daycare industry, loves kids, passionate about kids that's been her career. But she left that field because of the low pay and went to work in management for Taco Bell. Again...

Teresa Lampl: 22:25

$98,000.

Scott Light: 22:26

Making a lot of money, making a very good salary, a very good benefits package. And again, coming back to money, let's be honest, we will lose our best talent here in Ohio, if Indiana, West Virginia and Pennsylvania, if word gets out there paying a higher hourly wage for licensed social workers, we'll start losing our best talent to our neighboring states if that happens, so we have to talk about money. Anthony, let me come back to that question for you. At the federal level, what are you watching? What are you advocating for?

Anthony Kukura: 23:00

Sure. So, just to build on what Teresa was saying, I think a point that sometimes gets lost in the conversation is every piece of legislation that we were there for talking about last week was was is a bipartisan-sponsored piece of legislation. And I think that that is just a critical point in the times that we are politically is when when a lot of the noise is taken up with with very partisan issues. When we go to DC or even when we go to the statehouse as well, we are talking with a lot of members about pretty practical and common-sense solutions to big problems. And they just don't break through the conversation like some of the other issues do. But these are really things that that can have a real impact and in people's lives is, you know, one of the ones we were talking about last week was fixes to 988, the suicide crisis line. And the big problem at the moment is when you call that line, it associates with your area code, not with your geographic location. So, for example, if I were to call in this room, it would link me back to the Center in Cleveland because I have a Cleveland area code where if if you needed services that were geographically close, that isn't geographically close down here in Columbus. So it's a really practical solution to and it's you know, seems to be an easy lift if you will to fix something like that. But they're just a lot of the times it's that's why we're there is work to try and break that message through and that's where this advocacy is really important. Another one that we really have spent a lot of time on, at least Boundless has, is the standard occupational classification for our direct support professionals. This is our DSPs are not a classified role by the US Department of Labor. And that has been a big problem for a long time. A lot of times they get grouped in with home health care workers, STNAs, other types of of positions like that. But this is really a unique role. This is something that that deserves its own distinction. And it is a problem. You know, not just for Boundless, but for providers all all over the state. And what that would give us as the opportunity to professionalize that workforce to be eligible for workforce development grants and other types of opportunities like that. And that is also something that really has can make a positive difference in people's lives as it can really help us improve what we're able to offer to our frontline workers. So again, like two very practical ideas, and that really is pretty in line with most of the items that we talk about at the state and federal level. But it's getting past the noise of the moment, that is sometimes a challenge point,

Scott Light: 25:33

Let me follow up, they're getting past the noise of the moment. I've got a quote for all three of you. And this one is from Eva Marie Lewis, she is an activist, she's an advocate on all kinds of fronts for law enforcement improvement to affordable housing, and all kinds of things. And she said this, "To be an activist is to speak, to be an advocate is to listen. Society can't move forward without both." And when I found that quote, and I thought about where we are, Anthony, to your point in, in politics right now, because America is pretty tribal right now. And people can be firmly in one camp or another, and they're not speaking or listening to each other. They're not doing either one. Is that affecting

Teresa Lampl: 26:22

So sometimes it does. But I think to the point your work? that Anthony made these are, you know, when you're talking about these issues that impact people, and it's all of us, none of us are immune to dealing to being exposed to people who've experienced a mental health condition, especially since COVID, a substance use condition or even know somebody or family member that has a disability at this point. And so they are largely bipartisan issues. And so we have good traction around the issue. The challenge is, is breaking through that noise to motivate folks to actually do something to make change. But in this kind of hyper-partisan or tribal kind of, you know, mentality that we have today. It really is, it's more about how

Unknown: 27:10

Marci, how do we break through with these messages? do you create movement? And how do you create momentum? Because there's a willingness to do it. It's just a matter of does it fit within the strata of something that we're willing, that rises to a high enough priority within any camp to actually move the needle forward. And so that's the bigger challenge. I think, in the state budget, you know, we were very fortunate we have a governor who has led on these issues that we want people first we're going to take care of people. This administration has focused on listening, and then moving to action. But it's not just a governor, it takes the you know, the legislative bodies. And so they've been willing to do that, too, because there's been that momentum to break through. So the challenge right now is more about breaking through. Because there's wide support on these issues.

Marci Straughter: 28:16

I think talking to the self-advocates, because we're the ones living in and filling it. And also, I'm like, if you're like going with them to help them with a job, stay with them, like for a day and working with them. And I'm like, if they want to do like different things, like if they're like working, maybe they want their own apartment, or one a roommate and things like that. Like I just got appointed by the governor to the Ohio Statewide Independent Living Council. And one thing I was talking to the guy about was remote support, and helping people in their homes, learn about it, and also helping like with housing, you know, what, how, like, how that's gonna help with housing. I'll

Anthony Kukura: 29:16

I'll just add on to that I think it's it's just we're in a moment where sometimes at the national level, and also at the state level, that bipartisanship is viewed as boring. It's just viewed as kind of a boring idea.

Scott Light: 29:30

Tough to put in a Tik-Tok isn't it?

Anthony Kukura: 29:33

It is. You have both sides that really want just concrete wins for for their side at the moment. And when you show when bipartisan legislation moves forward, it doesn't, it's not always as flashy sometimes as some of those real big, you know, partisan priorities that sometimes make it across the finish line. But I think just to expand on it, how do we bring awareness to that? And I think one thing I bring up a lot of times, especially with the people that we have involved in, in this work, especially at the grassroots level is, there is power in reaching out to your elected officials. They really do want to hear from you. During the last budget cycle, when we were leading a lot of the grassroots work that we did, there were so many of my colleagues at the time that were so surprised when they sent something their state legislator, they got something back. And I tried to kind of preach this idea, and it's very true at the state level, it is still a true at the national level is, our political leaders are just people like us. They they live in communities, they, they, a lot of times, especially at the statehouse level, your state legislator might live in your city, or if not the city next door, they're very familiar with with their own communities. And it really does make a difference when they hear from the people living in those communities. And it goes a level further when you know, don't just live in their community, but you're also providing a service in their community. So, I think that goes a lot farther in this type of climate than then people sometimes give that credit for.

Scott Light: 31:04

That one-on-one that interpersonal connection.

Marci Straughter: 31:08

I think also like talking to your legislators, and then also talking to your superintendent in your county and talking to all those all, both of those people, to let people know the rights and stuff that you want for your county. And what do you want for it.

Scott Light: 31:30

Teresa, you're nodding your head.

Teresa Lampl: 31:32

Very much. I mean, I think you know, it's, it's really about building relationships. And you know, we all value human connection at the end of the day, that's, that's what matters to everybody. And so advocacy is really starting with just being willing to reach out and make that local connection, those relationships matter. And the best ones are when we you know, they start at at the local level at the grassroots. It's really important to for everyone to realize that their voice matters. And sometimes I think we live in a culture that tries to call out voices. Yet, that's the best, that's the biggest power that each and every one of us has, is the power of our voice, to raise an issue to make that connection. And to just reach out, it may not be received the way that you want it to be received, but you just keep at it. And eventually you do get the chorus of voices that raise the issue to where this is something we can we can change, because that's at the end of the day how all change happens.

Scott Light: 32:30

Overall, has social media helped?

Anthony Kukura: 32:34

It's a yes and no. It definitely is a great tool to reach a lot of people in a very short amount of time. A lot of times, on the other side, it's become a tool that people have become very siloed using. They frequently will see information that they kind of suits their viewpoint. So they're not always seeing other messages besides that. So breaking through there can really be a challenge on social media. But on the positive side, it really allows us to reach very diverse audiences in a honestly a very cost effective way as well.

Marci Straughter: 33:11

It has it has helped us with social media, like I'm on social media all the time, like talking to my friends, the majority of my friends live all across the state of Ohio. I don't know if you've ever heard of We Thrive Together, but I'm a member on there and our friends we come, we come together, like if we're lonely and we want to play games or different things like that. Like the other night, I was just talking to my friend, on my friends on Zoom. And then we have our own little groups on Facebook, where we all talk like we're from different parts of the state. So I think that social media is helping.

Teresa Lampl: 33:57

I think that social media since COVID, has created new opportunities for connection and that's the positive side of social media from an advocacy perspective, very cost-efficient to get information out and to cast a wide net when you're trying to make a message available. I think there's been so some other challenges. So one of the biggest challenges is, it's really hard to tell fact, from fiction. And so you know, how do you not dilute the message? Because it can, all you can have is one bad message can you know paints with a very broad brush, and all of a sudden you're in a defensive posture that you had no intention of ever being in. And so being able to tell fact, from fiction has been one of the biggest challenges. And then I think, you know, we're seeing with younger people, particularly, you know, adolescents, this increasing connection to social media where they're losing the ability to engage in regular conversations. And so we're willing to say things and be harmful and hurtful in ways in social media because of the degree of disconnection from another human being that we wouldn't normally say. And so the challenges around bullying and name calling and negativity that has become harmful is equally as challenging. And that plays out in the advocacy world too. Because it's much easier for someone in, you know, a Facebook or a Tweet, to be able to, you know, say something very negative about a person, an issue with no rhyme or reason, and no fact behind what they're saying. And then that becomes the alternative message. And it's hard to push those back, you know, those back down. So it's good and there's lots of good that can come from it. And we've, we've benefited from that. And then we use technology differently since COVID, in particular, but it's also got this this dark side that we have to be very mindful of.

Marci Straughter: 35:52

Like for example, you like, for me, I have my if I don't know somebody, I have my Facebook on private, so you can't get on my Facebook, unless I know you. And then also, some of the stuff is dangerous, but if you have like a whole bunch of your friends, like I go on the week on We Thrive Together, we play games, we have a thing, if you ever heard of Advocacy Wednesday, and as they are part, we started together, partner up with OSDA. I'm a part of the LSDA- I'm on their board. And they have guests on there. And everybody we talk and we listen to what they have to say. And then with our Facebook page it like gives like, what's going on what's our next activity on Zoom for the night.

Scott Light: 36:51

As we start to wrap up our conversation, I want to share one more quote with all three of you. And this one is from Maya Angelou and she said this, "I am convinced of this, that good done anywhere is good, done everywhere. For change, start by speaking to people rather than walking by them, like their stones that don't matter. As long as you're breathing it is never too late to do some good." Marci, why don't you start us off. Reflect on that quote, if you would, and then would you advocate for more people to just get involved?

Marci Straughter: 37:28

Well, one thing in with that, we are our person first and our disability is second, if you ever heard of that?

Teresa Lampl: 37:37

Yes.

Marci Straughter: 37:37

And, and like talking and talking with people with disabilities, like they're the person like, there's people like doctors, principals, people, they talk to the parent or the guardian first, but talk to the person because they're the ones that are dealing with this problem. And I think if they hear that from the person, even with providers, if their parent is going, like if they're going with them to find a provider or something like that, let the person with a disability say "What are you offering?" And then maybe when they hear that, that's how they can make that choice.

Anthony Kukura: 38:26

That quote does remind me of my favorite one of hers of mine is "I've learned people will forget what you said people will forget what you did. But people will never forget how How can they find you? you made them feel." And I think that is really the root of what we're trying to get across with this is this is really about making connections. And ensuring we spread our message in a way where it, when elected officials think of us they might not remember everything we said about what we do but we want them to associate us positively is when they think of Boundless they think of this industry and the work that we do. I want that to come across in a positive light. And I think that goes you know further with ensuring that people really understand the impact that this work can have. When we all engage in this together, that really can be impactful that can be meaningful. And we all share in the success, you know, we really do. I mean it's we all kind of rise or fall together in this type of work. And I would encourage specifically in the boundless side, what we're trying to get people involved with is I'm currently leading a grassroots arm of what we're doing. We're calling it the Boundless Advocates and it is made up of staff members, individual served, families and other community members. And that's really a group that you know, if you're interested in engaging in some of this grassroots work with with elected officials is that's it providing the opportunity to do so. And I'll just put a plug out that if anybody is interested, you know, they can contact me directly about that. And I just like to preface it with it's, it's completely optional engagement. It's just you know, making yourself on the list too, you're signing up to make sure that you're being informed of these opportunities. There's never a pressure that you have to do every step that comes They can email me that akukura, that's K. U. K. U. R. A, @i forward. But if anybody has any questions about that, or wants any more information, they're welcome to reach out to me at any time. amboundless.org.

Scott Light: 40:24

Okay.

Teresa Lampl: 40:25

So Anthony's quote was one that that also came to mind when I read through this. And for me, you know, kind of building on what you said, Marci, as well is, it really is that every voice matters. We all have a role to play, we all can be kind, as well as, you know, clear and passionate in terms of what our needs are. And it is all of us, collectively speaking together, where you create the groundswell. And that's how change happens. You know, I think it's a there's a Margaret Mead quote that says, "The only time that change ever happens is when you have a small group of like-minded people working together." And that is absolutely what this is about is when we're all together, you know, speaking in one voice, and every voice sharing their experience, that's really when change happens.

Marci Straughter: 41:18

One thing is clear language. Sometimes on an application or something in the doctor's office, that you don't understand, it's very important now to have a clear language. Like if it's something that I don't understand, I'll tell my public speaking coach, or somebody, can you explain it better? Or can you write this sentence more so I can read it? And then another thing is when we were talking about helping, one thing that I have is my Marci's "Keeping it Cooking" blog. And I show people how to cook with disabilities. And I'm on Facebook, and what my, who inspired me to doing it was my new my, it was I've had it for like five years and my new provider agency that I still have, said you have because I didn't like my last agency. They say you have these horrible stories about your provideres that you had at your other agency, let's do, you want to do a blog? I said, yeah. So I worked at a sheltered workshop called Arc Industries. And one of the participants that I worked with because I went to Columbus State to be a human service assistant, so I got a job at ARC industries. So I got to ride the van home with clients because at that time, I had non-medical transportation. And she was like, my staff pack this for my lunch, I didn't want this. I was like, did you know you had the right to tell your staff? What you wanted for your lunch in how you wanted to cook? She was like, I didn't know that. So I went home and I told my providers, let's cook. I want to start from the basics. But I want to show people how to cook and how to advocate for themselves, and how to tell their staff what they want for dinner.

Scott Light: 43:36

So where can we find your blog, Marci?

Marci Straughter: 43:38

On Facebook. Marci's Keeping it Cooking Cookbook, you can find it on Facebook.

Scott Light: 43:47

That's good stuff. That's that's a great way to wrap up this episode. Marci, Teresa, Anthony, thank you for joining us today.

Teresa Lampl: 43:54

Thanks for having us.

Marci Straughter: 43:54

Thank you.

Scott Light: 43:56

Thanks to our listeners as well. We can't do this without our all of our great listeners out there. And don't forget you can always be part of episodes to come. Email us your questions or comments anytime. At podcast@iamboundless.org. This is the Well-Being podcast brought to you by Boundless