Episode 2: Dr. Ben Schwartzman, Research Study 1 Principal Investigator

On this episode, we talk with the principal investigator of Research Study One, Dr. Ben Schwartzman, about his team's study, as he and his team are developing a combined parent and peer mentorship program to help adults with IDD connect to employment.

What is Zooming into Focus: A VCU-RRTC-IDD Podcast?

This podcast focuses on the Virginia Commonwealth University Rehabilitation Research and Training Center on Employment of Persons with Intellectual and Developmental Disabilities grant-funded project. It features interviews with the project's director, research study leads, and steering committee members discussing the research and training of the project. The new podcast will release episodes on the second Monday of each month over the next five years.

Lucian: 00:10

Greetings once again from Richmond, Virginia, and welcome to this episode of Zooming Into Focus, a podcast that explores and highlights the research and training developed by the Virginia Commonwealth University Rehabilitation Research and Training Center on Employment of Persons with Intellectual and Developmental Disabilities Project. I am your host, Lucian Friel from VCU RRTC. On this episode, we will be talking with the principal investigator of research study one, doctor Ben Schwartzman. Ben is an assistant professor of research pediatrics in the Keck School of Medicine at the University of Southern California and with the USC University Center for Excellence in Developmental Disabilities at Children's Hospital Los Angeles. He received his PhD from the UCLA Graduate School of Education.

Lucian: 01:06

His research focuses on supporting individuals with intellectual and developmental disabilities in their transition from adolescence to adulthood with a specific emphasis on inventions to connect adults with IDD to paid employment. Doctor. Schwartzman started at USCCHLA in March 2025, but previously worked at Vanderbilt University in the department of special education from 2019 to 2025 on a variety of projects related to transition to employment for youth and adults with IDD and their families. In research study one, his team is developing a combined parent and peer mentorship program to help adults with IDD connect to employment, and he's here to talk about it. Welcome to the podcast, Ben.

Ben: 01:56

Yeah. Thanks for having me.

Lucian: 01:58

How are how's everything out in California?

Ben: 02:01

It's good. You know, I can't complain. But weather's a little different than Nashville, so getting used to not having to check the weather report so often. It's pretty pretty same every day.

Lucian: 02:13

Right. Thank thank you for starting your day with us and and joining us early. Can you can you tell us about about your study?

Ben: 02:22

Yeah. So this study is based on our study from the previous RRTC where we it was a parent mentorship project where we matched parents of employed adults with IDD to parents of unemployed adults with IDD. So, originally, our goal was to create a parent intervention. And then through our work in that project, we we realized a lot of what we were doing through peer mentorship would be great to include peer mentorship in that with people with IDD and using their own lived experience to be mentors for adults that are looking for jobs. So working directly with the adults with IDD.

Ben: 03:07

And so our idea was because the parent mentorship was so helpful, we wanted to combine parent and peer mentorship into into one intervention. So we're we're rolling that out in this this next round of the RRTC.

Lucian: 03:22

That's excellent. I noticed in the title of the study, it says intervention efficacy scale up. Can you describe what that what that is, for those of us not in the sort of research field?

Ben: 03:35

Yeah. Definitely. So we the parent mentorship, that took place only in Tennessee. So for this next round, the scale up is adding another component. So we're adding the peer mentorship to that parent mentorship, and then we're also expanding our reach.

Ben: 03:52

The goal is for this to expand nationally. So instead of just being in Tennessee, we're in every part of The United States. So we're in California, Kansas, Tennessee, and Virginia for this next round. So we wanna see if we can take our Tennessee specific things that we are working on and kinda zoom out and make them nationally relevant.

Lucian: 04:17

That's awesome that you're expanding to different states. How and why were those four states chosen for the study, and what are some key differences in the locations that might impact the outcomes of the study?

Ben: 04:31

Yeah. Good question. I think, really, it was through existing partnerships and knowing folks at different universities that are doing great work in this area. So connecting with doctor Carrie Sjogren at Kansas University and their work in self determination and and working with people with lived experience and using that experience to really inform what we wanted to do with our peer mentorship. So that made Kansas an obvious partner in this.

Ben: 05:02

And then Vanderbilt is where I came from, and and we still have study team members that are at Vanderbilt University. So, and then my new university, so moving to University of Southern California Children's Hospital Los Angeles. So that's what, led us to running this in California, and then Virginia, obviously, with the connection to to VCU. So our goal in doing that is a lot of times, especially in employment, everything is very state specific, so there's different services in different states. I mean, they're similar services, but they're called different things.

Ben: 05:43

And so I think our idea was if we can look at each of these different states and how people connect to employment and the services that are available in each state, if we're able to do that in kind of these in these different settings, then we can make something that might be able to work for for any state. And so that's our goal. And then the other piece too is we want to increase the diversity of our participants that are on the project. In Tennessee, the majority of folks that participated were white, and we're just trying to look at more different cultural backgrounds for including them in this study as well just to make sure that what we're doing is is relevant to to all people across The United States.

Lucian: 06:32

You worked on the previous RRTC IDD grant. Did you gain any information during that study that'll help guide you on that?

Ben: 06:41

Yeah. Definitely. We we learned a lot from that that first round. So each iteration of this, we've changed and tweaked a few things and and learned a lot. So the way that that study worked so we did focus groups in in year one where we met with I think it was around 60 yeah.

Ben: 07:02

I think it was 60 parents of adults with IDD who had had work experience before. So those parents gave us a lot of important information about, like, what would be helpful in the mentorships, what sorts of information would parents need in connecting to employment, like, what what supports and services would do they wish that they had had for their son or daughter? That helped us create what we call a road map to employment, which is this step by step employment guide that that we created for families. It's about 40 pages long, and we learned that a lot of parents found it helpful, but not everybody looked at it. And maybe it was a little too daunting and too long.

Ben: 07:46

And so we're taking what we learned from that to this next project, and we're gonna really pare it down into the most helpful information and try to keep it a little more digestible. And, also, something we learned from the previous project was, initially, we kinda just said, here's the road map to employment and go mentor. And so that didn't always happen. Parents kinda needed some guidance into, like, what to talk about in their mentorship sessions. And then we also learned from just handing them the road map that maybe it would be helpful to have some guided sessions from our team on employment and what's in the road map.

Ben: 08:29

So that led us to creating what we called a short course to employment, and so that was four sessions over Zoom before parents got matched with a mentor. So it was just parents of job seekers. And so we just kinda did some of the basics, like an intro to employment, like intro to best practices and disability employment. So we talked about how to help their adult son or daughter or adult family member figure out what they're interested in and what their strengths are, figure out what types of supports they needed, how to talk to employers, and what the parents role in that should be because that's kind of always an awkward thing of sometimes employers don't always get it where, oh, how come I can't I'm not speaking directly to the adult. Why is there a parent involved?

Ben: 09:21

And then so we kinda helped parents figure out what to say in those situations and then how to connect to the, like, job coaching or supported employment supports in their area. So that short course, the idea was to kinda set parents up with some knowledge to start off, but then also give them things to talk about with their mentor once we once we paired them. And so, each of those pieces we learned, and we're we're gonna transfer that to this next project where we're gonna apply that to the peer mentorships. And so right now, in the next week or two, we're gonna conduct some focus groups with self advocates and with parents again just to ask them what sorts of things should we put in this new road map to employment, what sorts of help or guidance should we give to peer mentors and parent mentors and what to talk about in these mentorship sessions. We kinda have an idea of making it a little more structured.

Ben: 10:22

Before, like I said, we kinda just said, okay. Go mentor. This time, we're gonna say, okay. Maybe session one, talk about this. Session two, talk about this.

Ben: 10:31

And and so, yeah, we each time we do this, we're definitely learning a lot, and we're we're following the same steps of this next round. So the first round, did focus groups, then we did a small pilot, and then we did a randomized control trial. And so we're gonna do the same thing in this next round. We're doing focus groups pretty soon. And then next year, we're gonna do a small peer and parent mentorship pilot in Tennessee and see how that goes and then take what we learned from that to expand to these other states.

Lucian: 11:02

Are you enjoying this podcast? Do you wanna learn more about the project? Head over to idd.burrtc.org to learn more about the five studies of the project and get access to all the latest resources such as webcasts, journal articles, infographics, research highlights, and more. And how are that that's great that everything is building off of what you've studied in the past. And how are these mentoring partnership like, how are they paired up?

Lucian: 11:37

Is it just randomized? Are we talking, like, backgrounds, like interests, things like that?

Ben: 11:46

Yeah. So what we learned from the first round so we we pair people first by location. Like I mentioned so I I mentioned some of the differences in states and the things in the names for services and and things like that. But there's also differences at least in Tennessee, there are differences from region to region and what types of services were available or what they called certain things, like every accessible transportation agency has a different name in in each county. So that's just one example of things that are different from region to region.

Ben: 12:23

So in the original project, we paired people by East Tennessee, Middle Tennessee, or West Tennessee. That was kind of the first characteristic of the mentorship matches. And then from there, it was usually maybe similar disability labels or or diagnoses. So if it was a parent of an adult with autism paired with another parent of adult with autism or Down syndrome and Down syndrome. But what we also learned from that is asking the job seeker and their parent about what they would like in a mentor.

Ben: 12:59

So we learned that from the the previous focus groups about you know, different people have different things that they're looking for. Maybe it's somebody who has a job in the same area that they wanna find a job in, and that's maybe more important than the than the disability label. So we're just gonna try to ask each person and see how best maybe they can our idea is maybe to have them rank things in order. Like, what would be the most important to you? Is it the type of job that they have?

Ben: 13:29

Is it similar demographics or living in the same area? So we're gonna kinda have them choose based on that, and then we'll have this menu of mentors that they can pick from where we'll give them little blurbs about each mentor. And then we're not just gonna assign. So once somebody picks a mentor, we don't just tell the mentor, okay. Here's the person you're gonna be mentoring.

Ben: 13:54

We got we wanna make sure that that's a good fit for the mentor as well. So then we'll go back to the mentor, make sure that that's a match. And once they say yes, then we'll introduce them to one another.

Lucian: 14:05

That's awesome. I that sounds super exciting to kinda see the results of of of this study. What what is the importance of this study for individuals with IDD and their families?

Ben: 14:17

I think what we set out to do with this study is that we a lot of times what we hear is after somebody graduates high school, the goal is, oh, yeah. Just connect to this disability agency in your area, and they'll provide job coaching. And then what we were hearing from families is, okay. We reached out to them. We haven't heard back.

Ben: 14:40

It's been a year. I've been contacting them for months, or I'm on a really long wait list to get services. And then meanwhile, that person is just kinda sitting at home waiting for that job coach service. So the idea for this project came up of what are some of the natural supports that already exist out there, which is other parents. And then for this next study is other self advocates or adults with IDD in the community that are already working.

Ben: 15:07

So what are some of those natural supports that exist in the community that we could lean on that maybe just getting some advice from somebody is the key or some other maybe personal connection through that person's social network or adding someone to their circle of support that maybe knows somebody who's hiring, who is familiar with their family member or has some other kind of insider knowledge about the community. So I think our original idea was that so there's this person centered versus system centered approach where when you take a system centered approach, someone is transitioning from high school special education to job coaching. But that's not person centered. That's just talking about supports and services that are out there. So if the person has a goal of getting a job, the person centered transition would be what are the supports available in the community that could support them in reaching that goal of getting a job.

Ben: 16:11

And so I think the idea for this project was what are some people or other existing resources we could connect them with instead of saying you need to connect to this service system, if that if that makes sense.

Lucian: 16:26

Yeah. That makes perfect sense. What you touched on this a little bit, but how do you think the project will impact the field for assisting individuals individuals with disabilities getting employment?

Ben: 16:42

So there's a couple different ways that I think I could see this going. I think in the short term, since I've done a little bit of this peer mentoring work on a different project that I've heard from the peer mentors that they've just they've said it it feels nice to be the one helping somebody else instead of I feel like in my life, I've always been the one needing help. And and so I've been able to use my experience and expertise in helping other people from everything that I've learned. So that's that's one cool part is I think I could see this being a career opportunity for folks with IDD who maybe disability agencies across the country start hiring people with lived experience to be job coaches or to be peer mentors. And so that's, I think, a long term vision of this, and same for parents too.

Ben: 17:40

If parents end up wanting to pursue this as a career working at agencies or because I I mean, we we hear from parents all the time that they do this kind of stuff informally. They'll meet with a group of parents, and they all get together, and they share their resources and things. But, you know, that could be a really valuable position in the community working at an agency or working at a state department that works with folks with disabilities. So I think long term on the mentor side, it's been interesting that that could be a potential career option. Maybe self advocates get trained as as job coaches, and, you know, we have a job coach shortage.

Ben: 18:22

Everybody talks about how there's long wait lists and not enough supported employment services out there. Well, there's these people that are have been very willing to help on my projects being peer mentors that I think could use some of those skills in in job coaching, especially from people who have that experience of needing accommodations and knowing how to access them and knowing what types of job coaching is helpful for them and not helpful. So I think that's one potential area that that this project hopefully could continue in a way to connect with our these these already existing community supports.

Lucian: 19:05

That's excellent if, you know, individuals, you know, are participating in the study and they find their calling, you know, to work in supported employment. That that's super exciting. Speaking of that, what are you and the team most looking forward to during the study?

Ben: 19:24

It's a good question. I think we were so excited by how the results of the parent mentorship went that we're, you know, looking forward to seeing how the combined parent and peer mentorship goes. I think a lot of the times, it felt a little weird that we are only talking to the parents in the first round and that, you know, we we did set out to create this parent intervention. So but but I think it always felt a little weird that, you know, we were asking the parent, oh, how's your adult doing? Have they been able to connect to a job?

Ben: 20:00

And how's the job going? And without actually talking directly to the person who's applying for that job or or or working. So I think in this next round, we're excited to hear more about self advocates' experiences. And interestingly so this is this is what we're gonna try to figure out with our focus groups coming up, but we're trying to figure out the logistics of how peer and parent mentorship together will work. So there's the employed adult and the unemployed adult and then their parents.

Ben: 20:33

And so there's these dyads that will be mentoring each other. In our advisory team, we asked we have self advocates and parents on our advisory team. We asked, so do you all think that all four people should meet together for the mentorship sessions, or should it be the self advocates meet and the parents meet separately? The self advocates all wanted to meet separately. The parents all said, let's all meet together.

Ben: 20:59

And so I think we're gonna have to figure out maybe it's every other session or, you know, we get enough feedback from our focus groups that say, you know, they really should be separate. So I think we're looking forward to making sure that we follow what what people want us to do with that and and seeing what people think is the best option.

Lucian: 21:21

That's great. What what can we look forward to as consumers of the study?

Ben: 21:26

I think and maybe this this answers the previous question about what we're most excited about, but I think really hearing from the voices of self advocates about both sides. So, like, about how how it is to be a mentor for somebody else and then how it is to receive mentorship from an adult with lived experience. So I think kind of centering their voices more in our in our research this next round. And, again, we did set out the first round to create a parent intervention. So that but, again, like I mentioned, it did feel weird to not include the voices of the people that are actually connecting to employment.

Ben: 22:08

So I think this next round, it'll be pretty cool for everybody to get to see what the adults think of receiving mentorship. And then also asking them too if maybe what it felt to have your parent be able to talk to another parent about this whole process too. So I think, yeah, really, the probably the part that we're most looking forward to and that consumers or or readers of our studies can look forward to also is just how these peer mentorships will work, and and hopefully, we get some some positive feedback on that.

Lucian: 22:46

That's awesome. Looking forward to learning more about what's going on. And, if, you know, you're up for it, circle back with us in a in a few episodes and update us on on everything that's happening with the study. And I wanna thank you for taking the time to come on to the podcast with me and tell us all about what's going on with this really exciting peer mentoring study.

Ben: 23:12

Yeah. Thanks so much. Happy to to stop by and chat anytime.

Lucian: 23:16

Alright. We'll see you next time, Ben.

Ben: 23:18

Alright. Thanks so much.

Lucian: 23:19

And thank you all for joining us today. The contents of this podcast were developed under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research. Grant number 90RTEM0013. NIDILRR is a center within the Administration for Community Living, the ACL, Department of Health and Human Services, HHS. The contents of this podcast do not necessarily represent the policy of NIDILRR, ACL, HHS, and you should not assume endorsement by the federal government.

Lucian: 23:59

Again, thank you for joining us.