Episode 6: Guest: Amy Hewitt "No one is better at telling your story than you are."

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Chet Tschetter

Hi, my name is Chet Tschetter, and I'll be your host for a closer look, where we'll explore the most current and relevant topics covered in frontline initiative, which is a magazine produced by the National Alliance for Direct Support Professionals in partnership with the University of Minnesota's Institute of Community Integration. If you're wondering what Frontline initiative is all about, it's about the work that direct support professionals do on a day to day basis as they support people with intellectual and developmental disabilities.

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Chet Tschetter

I'll be talking to authors and taking a closer look at current practices, tools, and resources. So buckle up and let's hear what the authors have to say.

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Chet Tschetter

We have a very special guest with us today, Amy Hewitt, who's the director at the Institute on Community Integration at the University of Minnesota. Welcome, Amy.

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Amy Hewitt

Thanks, Chuck.

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Chet Tschetter

It's great to have you here today. Amy, will you start off by just telling us about yourself?

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Amy Hewitt

Sure. I could go on and on, but I'll keep it really short. Chat. And just for you. As you said, I direct the Institute on Community Integration, and we're a research center that does a lot of research to improve the community living opportunities for people with intellectual and developmental disabilities in their communities. And our center's been at that for well over three decades.

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Amy Hewitt

I've been here all that time, and I spend my days trying to learn new things that will help to improve policy and services that support people with intellectual and developmental disabilities. And while I've been here that long, my career started as a direct support professional when I was in college, and I worked at a local multi-service center in Bloomington, Indiana.

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Amy Hewitt

And really, that's where I got my roots and decided that I wanted my career to be in supporting people with intellectual and developmental disabilities. After that, I went on to, develop group homes, some of the very first group homes in the state of Indiana, liberating people with intellectual and developmental disabilities from institutions in that state. And while on my way to Minnesota and never left.

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Chet Tschetter

I love how you said you, liberated people from the state institutions. That's a great way to look at it. You I think you also have a personal connection, though, too, don't you?

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Amy Hewitt

I do. My husband's brother, Nathan, lives with autism and a number of other mental health diagnoses. He's also in recovery from substance abuse. And so I live it every day in terms of what life is like for people with autism and related developmental disabilities, what the system is like, what the system expects of families, expects of people, and a lot of the hassles, but then also appreciation for the services and supports he has.

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Amy Hewitt

But then it's hard for me because he has services, and I know that 75% or more of people with intellectual and developmental disabilities receive no services at all.

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Chet Tschetter

Yeah, that's a huge number.

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Amy Hewitt

It is.

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Chet Tschetter

Huge number.

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Amy Hewitt

It is. And most people don't know that. Most people think if you have a need, you get services. And it's just not true.

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Chet Tschetter

Right? I know that both advocacy and voting, Amy, are super important to you. But let's start out by, talking about advocacy. And in this next issue of Frontline Initiative, you wrote an article on step by step advocacy recommendations for communicating with your, representatives or elected officials. And you wrote the DSP, that the DSP workforce is really essential to supporting people with disabilities, yet are often left out of the media and not at the table for the conversation.

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Chet Tschetter

Tell us a little bit more about that. Sure.

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Amy Hewitt

So I guess I would I would start out by saying that direct support professionals are the people doing all the work, but they're the people that we hear the least from, and it is hard to find them because they don't really have their own professional associations. They don't, aren't known to our communities and, you know, gather and network.

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Amy Hewitt

They're rarely invited to go to typical conferences in the disability community. And if there are DSPs there, it's usually fewer than there are supervisors and managers over the last 30 years, I've seen a lot of improvement in that area in terms of really engaging direct support professionals at all levels in an organization, but it is not common practice and what I see happening is every year, like clockwork, employers of direct support professionals are very active in their trade associations across the country advocating for increased rates, which then can give them the opportunity to increase wages for direct support professionals.

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Amy Hewitt

It's very common for direct support professionals to be invited to go to the Capitol. In most states, there's like a disability day at the Capitol and there's organized messages, but those messages are always created by somebody else. They're scripted by the employers, by the organizations, by the trade associations, by the unions. And I think if our elected officials are really going to understand who this workforce is, what their importance is, they have to hear from the workforce.

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Amy Hewitt

And it can't be scripted. It can't be the copy and paste emails can't be the copy and paste social media campaigns. It really has to be. What is it like to work as a direct support professional and to live in all communities on the wages that direct support professionals earn? So to me, we have to figure out a way to leverage the voice of the people who are actually doing the work and making the difference in people's lives.

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Chet Tschetter

Amy, it sounds like, one of the things that's really needed is DSPs to get together and really have kind of a grassroots effort to be heard. Do you have any recommendations or ideas for that?

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Amy Hewitt

I really do, and I think there's leadership happening on a national level with the National Alliance for Direct Support Professionals, and I think this will be the third year that they are bringing direct support professionals together virtually to teach them about policy advocacy, its importance, and to help them reach out to elected officials. That organization can do things like those virtual virtual connections and and those kinds of things, but they're really in very few states.

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Amy Hewitt

I could count them on my one hand. I know Alaska and Ohio have very active associations for direct support professionals. And for many, many, many years have had annual conferences that are solely focused on people in the profession of providing direct support. Those are the kinds of professional opportunities that direct support professionals need to be able to network, to understand that they're part of a profession that's much bigger than the place they work, and to understand the importance of their work and the value in professional development.

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Amy Hewitt

And so finding ways in states for for direct support professionals to connect outside of their work is, is a really important component into rising and uplifting this profession to professional careers.

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Chet Tschetter

So in my experience, when DSPs have have had a chance to come together, sometimes there's all of a sudden this realization that there are other people doing the same, similar work that I'm doing have some of the same challenges when many times as if they're working in somebody's, home or just helping supports somebody, in their employment.

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Chet Tschetter

They might feel fairly isolated, but to have their voice together really makes a difference. And to know that they're not the only ones.

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Amy Hewitt

I think that's that's so true. And it's really one of the the challenges of being a direct support professional in Individ marginalized, person centered supports. You just don't have the person working next to you, or the 2 or 3 people working next to you, that when you need support or you need help, you can bounce ideas off of, you can problem solve together.

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Amy Hewitt

You can make those important ethical judgments in a way that you're not making it alone. And as we continue to individualize supports, we're going to have to figure out ways to get direct support professionals that networking community that they they need to have together. I know when I go to my professional association activities on a national level, it's really a highlight of my my year because I get to connect with people who do the same thing that I do, but they do it elsewhere.

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Amy Hewitt

They do it in different states, different countries, and I get to learn from them. And that's so much more important than learning from some regular story required training or those kinds of annual update trainings that my employer here at the university requires me to take.

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Chet Tschetter

Yeah, absolutely. That mentoring that you can get from a coworker sharing of experiences is just, probably has kept a lot of direct support professionals in their job because they've had that peer support.

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Amy Hewitt

I would say absolutely. And when you're inside your employer and you're working, there are just constraints on you, right? Like there's policies you're following, there's oversight, there's regulation. When you can step out of that and just be with your peers. Without that pressure, you can get all kinds of support and you can talk about, well, how did you handle a situation like this?

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Amy Hewitt

Oh, I did it this way. And you just see those connections being made. If you've ever gone to the NAD, ESP annual conference, that is one place that lots of DSPs from all over the country come to. Although there's a fair number of supervisors and managers that attend that conference too. But one of my favorite parts is just to sit in common areas and listen to how direct support professionals are supporting one another, are interacting with one another, are having fun together, are challenging one another's ideas, and you just can't get that if you're with the same group of people all the time, or the really in our field is that, you know, people are

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Amy Hewitt

moving from place to place to place to place to place, because they don't stay in a given employer for more than a year. At least half of DSPs don't.

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Chet Tschetter

Yeah. Sadly, earlier you mentioned that any DSP advocate symposium that's coming up on April 30th and May 1st of 24 during the symposium, the people who attend, have the opportunity to learn about policy advocacy. And it's really if you haven't done that before, when I have attended the last two years, it's really been an opportunity to learn.

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Chet Tschetter

What's the best way to advocate for yourself in your profession. And it really kind of leads into the article that you wrote, where you propose there's like a five step process to develop your DSP story. Tell us about that process and why it's important to plan the message before you go and speak with an elected official.

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Amy Hewitt

Sure. You know, I probably won't get the five steps right chat, but I think the place to start is first to know who your elected officials are. And most people who live in this country cannot tell you who their local elected officials are, who their state elected officials are, and who their national elected officials are.

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Chet Tschetter

Don't ask me who my local elected officials are, I don't know.

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Amy Hewitt

There are websites that you can go to. I think I included one in that article. You just click on it, you put your zip code in and bingo, they all just show up for you and their contact information shows up for you. So that's really the first place is you have to know who they are. And then in today's world, there are a lot of ways that you can get your messages across to elected officials.

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Amy Hewitt

I know with some of our students and fellows here at the Institute on Community Integration, we want them to learn how to advocate and how to share their stories and their messages. And so we offered them different ways to do that and teach them different ways. So you can write a letter, you can send an email, you can use social media, you can pick up the phone and make an appointment and go see the person.

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Amy Hewitt

Right then and there. Or you can just walk in and to their offices and try to talk to one of their staff. The biggest thing is not to be intimidated by the whole process. They work for you and you are a constituent. So first and foremost, that's the almost the very first word that should come out of your mouth.

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Amy Hewitt

I'm one of your constituents, and I have an issue that I want you to learn about and help me to solve the problems that I'm facing. Once they know that you're a constituent, then depending on the way in which you're trying to communicate with them, you have to shape your message. I remember the very first time I was ever asked to go to the state Capitol and talk about actually direct support workforce issues.

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Amy Hewitt

I was really prepared. I had this long thing. I figured out what I was going to say, and by the time I got there, I was on time. But by the time the person was ready to talk to me, they were literally racing to some committee meeting. I was following them side by side, chasing them down the corridor, trying to get my message out.

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Amy Hewitt

My message was way too long, like I needed a 32nd sound bite.

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Chet Tschetter

Elevator speech to.

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Amy Hewitt

To grab their attention. So that's what we teach our students to do. Is the elevator speech like very quick to the point. And what's the action that you want? The person to take? Sometimes there's a bill that's already been, routing through the process. And if you know the name of that bill, you can just go straight to that bill.

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Amy Hewitt

I want you to support this bill because and give them your reason. But a lot of times, and the most important conversations I think that we have with our elected officials is when we let them know who we are, what's important to us, why it matters, and what we want them to do. So it's not like the first time you meet with an elected official or communicate with them.

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Amy Hewitt

You're going to get the problems you have solved. But the more times you go back and the more you build a relationship with them, the more effective your advocacy is going to be. So a big part of it is putting yourself out there. Know where they are, find them. Let them get to know you. That's just a really critical part of the process.

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Amy Hewitt

And I know a number of DSPs who are on a first name basis with their elected officials because five years ago they started bringing up the issues that they struggle with and the challenges that they want help in solving, but they didn't get known right away. And now those elected officials actually reach out to those direct support professionals.

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Amy Hewitt

And part of the reason they reach out to direct support professionals when they get to know them is because the DSPs know what's happening there. They're doing the work, and they're not asking for more money for their businesses. And while it may or may not be fair, I know I've experienced elected officials saying, you know, I just don't really understand this business model.

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Amy Hewitt

These providers come year after year after year and ask for more money to be able to increase wages for direct support professionals. So there's a little bit of a distrust around that. And I think DSPs bring an authenticity to the message, and it's just so important that their, truth be told. You know, we did a study, we did a series of studies during Covid 19, and some of the facts that we learned were things like 73% of direct support professionals are the primary wage earners in their home.

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Amy Hewitt

So I think about that in the context of knowing what their wages are, knowing how expensive their benefits are, knowing that they're more often than not single parents and they're trying to live on the wages that they earn as a DSP and the way they can get their income up is to work a whole lot of overtime or to work multiple jobs.

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Amy Hewitt

But what's the effect of that on their children if they have children at home, what's the effect of that on their extended family? If they want to spend time with their extended family, what are the other government benefits that they have to rely on because their wages simply aren't high enough to be able to afford housing, transportation, heat, food, all those essential things.

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Amy Hewitt

And to me, that's the biggest travesty in this country is that this is a group of employees who are doing extremely important work for which they have to have high skills, high knowledge, and we are rewarding them for that by paying them wages where over half have to depend on other governmental assistance just to be able to get by.

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Amy Hewitt

And to me, that's just a travesty. And if Covid 19 did not convince people in this country of that, I don't. I don't know what will, you know, DSPs sacrificed so much during that whole period of Covid 19 when we had no vaccines, when we, you know, were isolated and in many cases they were working 60, 80 hours, some of them living inside programs for months without a break or without seeing their children or seeing their family members.

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Amy Hewitt

And yet, at the very beginning of the pandemic, they weren't even identified as essential workers need to fight for that, right?

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Chet Tschetter

Yeah.

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Amy Hewitt

That's just ridiculous.

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Chet Tschetter

That's why it's so important when you do, talk with your legislators and lawmakers about your personal story, and you talked about people working overtime and working multiple jobs, how does that affect them as a person? Their physical health, their mental health, along with their family and everybody, like you said. But how do they how do they continue?

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Chet Tschetter

And if the lawmakers don't know that really personal story, it's it's not going to be as effective. When they hear that bill, they're not going to connect it with the real people, with the constituents, constituents in their district.

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Amy Hewitt

I will tell you often when I'm on Capitol Hill talking to elected officials and their staff, the things they remember are those stories. And the most powerful is when a direct support professional and somebody with an intellectual or developmental disability can share their stories together, because the person with a disability is sharing the accomplishments in their lives, the opportunities in their lives, why they need some help in order to, live in the community.

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Amy Hewitt

And then you have the direct support, professional sharing what their life is like and what it's like to live on the wages. And so I think that dyad would be like the ideal, though it's difficult to make happen. I just think those are the most powerful stories, though, the the stories of the people who are benefiting from the support and the stories of the people who are providing the support.

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Chet Tschetter

Yeah, absolutely. Amy, we know that voting is really one way that we can advocate for ourselves and our profession. What do you say to voters who are really, disenfranchized with voting today?

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Amy Hewitt

Well, the first thing that comes to my mind is then don't complain.

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Chet Tschetter

Right?

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Amy Hewitt

If you can't get out and vote, then don't complain about what's happening in your state Capitol or in Congress, because your vote is your power. Your vote is the single biggest thing you can do to make change in this country. And all you have to do is look at voter turnout. We happen to live in a state where voter turnout is very high.

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Amy Hewitt

I think we compete with Maine every year for being the highest in voter turnout. But in many, many states, it's not even close to where we are. And I think we're in the 70s, maybe mid 70% in terms of voter turnout. So I think people get disillusioned because they just don't know how to make change or how to influence the process.

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Amy Hewitt

And in today's world, there's just so much dichotomy izing of, you know, there's this wide, wide gap between ideology and you just sort of do face days where you think, what on earth? How does anything ever happen? But if you don't vote, then we're not going to create change. And to me, that's that's just a fundamental. Responsibility of every person who can vote should vote.

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Chet Tschetter

Right. If we want things to change, we need to be a part of it. So it's important to find out who the candidates are and what, what they stand for, what are what are the issues, and where do they stand on those issues to see how they align with your own values and how you'd like to see things change for?

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Amy Hewitt

Yeah, I think that's really important. And if it's a person who's running for reelection, it's really important to know how do they vote? How do they vote on your issues and hold them accountable. If they vote on an issue that is in opposition of what you want, and you just let them keep doing that without letting them know, hey, I didn't I didn't like that vote.

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Amy Hewitt

And here's why. And here's how that vote affects me. Then they aren't ever held accountable. So it's it's you know, voting is really important. But once people are elected, it's also important to give them a grade. Let them know how you think they're doing, and remember that they work for you. You don't work for them.

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Chet Tschetter

That's right. Amy, is there anything else you'd like to say to the listeners in regards to advocating for themselves in the profession or voting?

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Amy Hewitt

I just would say really reflect on how you contribute to your community, how you change people's lives. Day in and day out, the skills that it takes for you to do your job, whether you're trained to do that or not, you have them, and you have to fight for what you need and for the recognition and the respect that you deserve in your profession.

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Chet Tschetter

Yeah. Thank you so much, Amy. I really appreciate appreciate you being with us today.

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Amy Hewitt

Thanks for inviting me.

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Chet Tschetter

Awesome. Thank you for taking a closer look with us. You can follow a closer look wherever you find your favorite podcast so you don't miss a single episode. You might also want to consider following Wellness Matters for Direct Support, a podcast for direct support workers as we share information that can help support your health and wellness. To find all of the issues of frontline initiative, go to Z dot n.edu you Backslash Frontline initiative.

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Chet Tschetter

Here you can, subscribe and get the next issue sent to you right away as soon as they're published. Until next time, be well.

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Pete McCauley

Thanks for joining the conversation. If you'd like to reproduce all or part of this podcast, please email ICP pub@um.edu. Our show is co-produced at the University of Minnesota's Institute on Community Integration by Frontline Initiative, managing coeditor Chet Cheddar and AISI media producer Pete McCauley. Skyler Mihajlov is our editor. Graphic designers are Connie Burkhart and Sarah Curtner. For more information on the Institute on Community Integration and all of our products and projects, please visit ICI.mnu.edu