Kerstin Sjoberg: ALC ChangeMakers Podcast Interview
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Audio Only - All Participants: [00:00:00] Hi everyone. Jennifer here and welcome to the ALC Changemakers Podcast. Today I want welcome Kerstin Sjoberg. Kerstin is the Executive Director of Disability Rights Ohio. And I know Kerstin because ALC has worked with them over the years, just off and on based on their different types of programming.
So just so excited to talk to Kerstin and for you all to learn more about Disability Rights Ohio. So welcome. She, thank you. I'm glad to be here today. Awesome. It's so good to have you. Can you tell our listeners a bit about your leadership journey and how you came to work for this awesome organization?
Yeah, so actually, um, I, when I first graduated from law school, I spent a few years at a large private firm, but I was very interested in doing pro bono work and had the opportunity to work on a pretty [00:01:00] significant Fair Housing Act case. That was about lack of access to public water outside of the city of Zanesville, Ohio.
And I did that for a number of years. And when it finally went to trial and we got this really amazing verdict for our clients at the time, it was the largest Fair Housing Act verdict in the nation. Um, that was in 2008. I said, you know. I think I wanna do civil rights work full-time. This is what gets me excited these days.
And so I started looking and I was just really, it was just serendipity. I don't know, something like that. Um, did I say somebody Rights? Ohio was looking for a legal director. They wanted someone that had federal court litigation experience, which is what I had just done, and they were willing to teach me the disability law part because I didn't know that, right?
Mm-hmm. Yeah. So it was really just, it was fortunate that the timing worked out, that what they were looking for really just matched up directly with what I had to offer. And so I came on board in January, [00:02:00] 2009. Um, as their legal director and have been here ever since, and just, you know, took on more responsibilities as I had the opportunity to do so over the years.
And in 2020 is when I became the CEO. That's awesome. Yeah. And I think this is around the time that ALC started working with your organization. We worked on something called the Voca Publication. Yeah. And doing some of that work. I dunno if you wanna explain what that is for, for listeners, but there's different vernacular in this space.
I name what that means. Yeah. That was a, we, we had a victim of crime grant for a period of years. Yeah. And we worked on a publication. For youth, uh, for children about their rights in youth residential treatment facilities because they experience a lot of abuse and neglect in those facilities, and we wanted them to know their rights in a way they can understand it.
We worked with an illustrator and we brought you in because we wanted to make sure that it was like basically culturally competent and would be effective for the audience that we were working with. Yeah, that was such a cool project and such an introduction to the organization. Can you [00:03:00] really, for listeners name what you do and like the uniqueness of DI Disability Rights, Ohio?
Sure. Absolutely. So Disability Rights Ohio is at its court advocacy organization. We cover the state of Ohio and we are primarily federally funded, which does make us unique as a nonprofit. Right. Um, and we have a really. Key identity with those federal funds. That's called the Protection Advocacy System for people with disabilities.
It's been around since the 1970s. Mm-hmm. And was set up to be an independent advocate for people with disabilities. Yeah. But really at the end of the day, we have sort of five core functions. We advocate, which is providing people information and legal advocacy assistance on different issues. Yeah, we investigate, which is sort of what the part, the protection advocacy system was set up for.
And that's where we monitor facilities and investigate abuse and neglect. Um, we, um, educate, which is obviously providing information to people right, about, um, their rights about disability issues. We engage. Uh, so we work with our [00:04:00] communities to elevate voices, particularly in policy decision making realms, and we review, and that's, uh, the newest grant for the protection advocacy system.
And that's where we review representative payees of people that get social security benefits. So someone that's managing their financial benefit for them because of their disability, we review to make sure that they are, um, doing it properly and that there's not exploitation happening there. Yeah, I mean, I think it's just such interesting, important, and nuanced work.
I'm, I'm super curious, Kerstin, you know, we're in such an interesting and challenging landscape for so many nonprofits and advocacy focused groups. I'm really curious to learn how you all are navigating, you know, these challenges or what choices you're making and just what this looks like for you now.
Absolutely. So one of the challenges is, you know, that we rely primarily on federal grant funding. So when there was that very temporary but scary freeze at the end of January, that was something that we were alarmed by. [00:05:00] But fortunately, that did get fixed in the court process and has sort of become a non-issue to a large degree.
The next big challenge for us was that the administration's budgetary, um, priorities would've eliminated. Some of our grant programs, and fortunately, Congress has not followed suit. They have kept funding, not just for us, but many other disability programs, including funding for the individuals with disabilities and Education Act and things like that.
They have kept that funding. Well, they haven't actually passed the budget yet, as of what we're talking about now. Um, I know maybe they'll, by the time this airs, but they propose to do level funding. The same as last year in Congress. So that's helped, but how we've navigated some of those challenges is.
You know, we have really put, um, a lot of effort into two things. One, educating policy makers and two, collaborating and engaging with our community. So the disability groups that we're gonna be affected directly [00:06:00] and indirectly, right? Because what we do impacts other groups and individuals obviously, that we work with.
If, if we lose our funding. It's hard for us to lift up the work of other organizations that don't get that funding, but rely on us for different things. So we came together and it's been a pretty constant effort to bring information to policy makers and to the community about the importance of these programs, what we do, the impact we have, how we all work together very efficiently.
So it's kind of that, you know, feeding into how we actually help eliminate fraud, waste, and abuse, for example. Right? Because we work together effectively. To help people with disabilities make use of the services that are out there, live in their homes and communities at a lower cost than say, an institution.
Yeah. And just be generally productive, active members of their community as constituents of the people that are providing these, the funding for these programs. Right. So, so that's been one of the main things that we've been doing. And that's, you know, obviously taken staff support, but our board's been very engaged.
And then, like I said, [00:07:00] so many other organizations and community members have really stepped up and collaborated with us collectively. Yeah. Well that's something that I just noticed in working for you all that you have such an engaged staff and board, right. People really, really believe in the issues in the work.
And for listeners, we did some unconscious bias work with the staff and board over the last couple of years. I'm just curious about how are you all, how are you all adapting some of those strategies today? Right? It, it feels like there's so much adaptation. Yeah. That's required. What does that look like for you now?
Yeah. So, you know, uh, we, and as you know, in working with you, have made it a priority to make sure that our workplace is inclusive. Yeah. Our vision and our mission statement is all about elevating voices, empowering people, and achieving equity. Right. At the end of the day, that's what we're about and it's really baked into what disability rights is all about.
Right? Yeah. When you look at the disability rights movement, when you look at how the, even the Americans with Disabilities Act was put together. It incorporates, it doesn't use the word, but it [00:08:00] incorporates the concepts of equity. Inclusion right. In the law. Yeah. So it is part of what we do and it is not going to change.
Um, the way I guess we've adapted is we're really just trying to stay true to that mission and that focus, you know, we. We understand there's a lot of noise and narrative out there that's very negative in this space, and to large part, we've kind of stayed out of it from both sides, right? Mm-hmm. We are nonpartisan.
We wanna stay that way. We wanna be able to help our population with what they need. We know at the end of the day, that does incorporate all the things around diversity, equity, inclusion, because we need the diverse perspectives of our community, which is represented on our board to make good decisions about our resources.
We need to be inclusive in our workplace to make good use of our talents, of our staff, and we need to ultimately work on achieving equity, because that's what we're, we're all about in the disability rights space and the movement. Yeah. We don't have to make it a separate issue, right? We're just, [00:09:00] we're kind of just staying true to the work and making sure that we can get to where people need us and continue to provide those resources and not get caught up in.
Fighting over words or fighting over a nonsense narrative, honestly, at the end of the day. Mm-hmm. Mm-hmm. I love that church. And staying true to the work, right? I think that's just so important for groups like yours in this era, in this climate. Um, you were working with really vulnerable populations and communities, so it's super essential that you stay true to the work.
What's, what's, what's one thing you'd want listeners to know about you all? Like if for people who've never heard about you before as an organization, what's something that you would just wanna name or make super clear to them? I think one of the things that's really important about us is that we are led by people with disabilities at all levels.
So that starts with our board, which is a majority of people with disabilities. Most of them actually have a disability. Several of them are also family members. And then we have other professionals and advocates with experience in the disability space. [00:10:00] Um, and then at the individual client level, when we do our work, we are directed by the person with the disability to the maximum extent possible.
You know, there might be situations where we can't get direction. There are certainly situations where someone has a legal guardian that in order to achieve what the client wants, we have to work with the guardian as well. But we don't take action against what a client that has a disability tells us they want, right?
Mm-hmm. We always make sure that their wishes, their interests are the forefront and their leading what we do. And then on the system level, it's the same thing, right? We get our input on our goals from people with disabilities. And in our policy work in particular, that's been a shift over. I mean, it's always been that we were led by people with disabilities, but a, a shift we've made under my leadership and working with our policy director has been to move even further, like lean further into that and really focus on.
Elevating voices and kind of just providing, providing what people with disabilities need in order to be active in [00:11:00] that, that policy decision making space. So that included working on accessibility at the State House, um, both physical and accommodations process. Um, that included just providing information and training to people so that they could go and testify during the budget.
And we saw that play out a couple of years ago when hundreds of people showed up and said, we need higher wages for direct care workers. And guess what? Historic investment by our legislature, which is not necessarily something you see in a state budget process in wages for direct care workers. So it works.
Um, but we really have like leaned into that principle even more and we've seen it be effective. I love that. I love that. Well, there's just so much good stuff that you all do, right? And I think one of the reasons why I wanna make sure we share your story is because you and your team work so incredibly hard to protect the rights of those with disabilities.
And I think what's also unique is, and that's something that I appreciated, that your staff and board are filled with people who have disabilities. [00:12:00] Right? And I'll just name that the staff and board are wonderful and they were just so, um. How can I put it? Just honest about the challenges and the needs.
Um, we're great at giving feedback about like what would work and what wouldn't work for them, and I think that's a huge part of advocacy. Right. And so you have that on your team. Um, what else would you like folks to know about the organization or how they can reach you if there's something that they could really just begin to do to take action with you?
Absolutely. So if they're in, if you're interested in learning more about what we do once a week, we put out what we call, um, an advocacy matters piece. Basically Our newsletter. Yeah. But it's short to the point, but it gives you a sense of what we're focusing on. Lifts up some of the work that we're doing.
So that's one way. Go on our website, sign up for our newsletter, and you'll get that email. Usually it's usually only once a week. Occasionally we'll push something else out if there's something really significant going on, but we're not gonna. In inundate you with emails. Um, but we do have another option that is actually a [00:13:00] separate signup on our website and that's on our policy page.
So if you're really interested in getting involved in policy, if you wanna know. Uh, what are the, the issues with disability that I might wanna weigh in on? Yeah, if there's something happening at the state or federal level that you could testify about or submit comments, or, there's other groups that have activities that we share through an email we send out once a week, usually on Wednesdays called advocacy updates.
And that's part of what we've done with what I talked about earlier of really trying to lean into what people with disabilities want. And one of the things was is that we have. A staff person who's dedicated to basically providing that kind of support. And one of the things that she does are these advocacy updates, right?
To make sure that information is getting out to people about when, where, how to do something right. To take action, to get involved in another group and be engaged in their communities. I love that. Well, for listeners, I know like part of this is ways to get involved, right? There are so many great groupslike Disability Rights Ohio [00:14:00] doing such amazing work.
And so there's a way to take action. And for listeners, we're going to, um, take the information that Kerstin has shared, include in the show notes and share it with you so you can get involved. Kerstin, thank you so much for joining the podcast. I loved having you. Thank you. It was great chatting with you today.
Awesome. Alright everybody, until next time.
