Speaker 1: Hello, and welcome to the Promise of Discovery, a podcast where members and investigators at the Vanderbilt Kennedy Center talk about their research and intellectual and developmental disabilities. Elise McMillan, J.D.: Good afternoon. My name is Elise McMillan. I co-direct the Vanderbilt Kennedy University Center for Excellence in Developmental Disability. I'm here today with Erik Carter, a professor of special education at Vanderbilt University, who co-directs the center with me, and Emily Lanchak who is an educational consultant at Vanderbilt University with several of our different projects. We are here today to discuss the Tennessee Disability Service Study, but first I'd like to ask a little bit more of our two guests and find out more about their background and work. So I'll start with you, Erik. What's your position at Vanderbilt in addition to what I just described? And how long have you been in this role? Erik Carter, Ph.D.: Thank you Elise. It's good to be with you and with Emily. I've been at Vanderbilt now for 12 years in the role of a professor of special education where my work really focuses on how we help launch young people with disabilities to a good life after high school. But I've actually been at Vanderbilt many years before in my doctoral studies and also in my master's studies, so all the way back stretching to the early 1990s. Elise McMillan, J.D.: Thanks Erik. And Emily, what about you? Tell us more about your role and how long you've been in it. Emily Lanchak: Sure. Similarly to Erik, I too have been at Vanderbilt since I was a student. I did my undergrad and master's, took some time off and was teaching and have been back now as an educational consultant for four years I think now. So before joining this project, I spent two years as a team member on a statewide project where we supported school systems with tiered systems of behavioral support, and then for the past two years I've been on an employment related study and this Pathfinder Study that we'll talk about today. Elise McMillan, J.D.: Thanks. And I have the pleasure of working with both of y'all on a number of those projects, but I'd really like to know first to you, Erik, how did you get interested in disabilities research? Erik Carter, Ph.D.: Well, I would say I stumbled into it in many ways. I came to Vanderbilt in the mid nineties to train as a future special education teacher. And as part of that training, my funding came through working on local research projects that got me out in schools studying the impact of inclusion and relationships on those with significant disabilities. And I just became enamored with the ways research could help us better understand the practices we should and shouldn't use and how research could help us understand the difference our work in schools was actually making, and I haven't turned back in all the years since. Elise McMillan, J.D.: Thanks, Erik. Emily, what about you? How did you get interested in research in this area? Emily Lanchak: Yeah, I would say my path also came through my work as a student at Vanderbilt. My undergrad, I was a general education major. So when my student taught, I was teaching high school history, and I think I was a special education minor so I took a couple classes, but really when I student taught it was a big kind of eye opening moment of just... I had such a mixed bag, I will say, of range of abilities in my classes. And really was just wondering how some students who really struggled made it all the way to 12th grade with some of these struggles and just really wanted to dive more into that and stayed, and got my masters to really look into reading education and things like that, and haven't turned back since. Elise McMillan, J.D.: Okay. So that does take us now to the Tennessee Disability Services Study. Erik, would you share some about the origins of this project and what we were hoping to learn as we began this study? Erik Carter, Ph.D.: Sure. Well, the origins of this project really go back to what our collective call is as disability agencies and organizations and programs and schools. It's about supporting Tennesseans with disabilities and their families to flourish in all aspects of their lives. That's at the heart of our work at the Vanderbilt Kennedy Center. And we also know through that work, that the critical role that formal and informal services and programs can make in promoting that kind of thriving. But at the same time, we know that so many people with disabilities and also their families are often unaware of or struggle to locate the disability related information and resources and training and support they need. And it's not just individuals and families, but also many professionals who are often uncertain about who else in their community could be drawn upon us as partners and allies in this work. Erik Carter, Ph.D.: So we're as a center trying to change this landscape in Tennessee so that navigating that array of information and systems is not described as difficult and discouraging, and so the Tennessee Disability Services Study is really part of our investment in this area. We're really fortunate in the state to have Tennessee Disability Pathfinder as our state's central informational and referral program. That's been a primary way that so many individuals and families and professionals learn about what's out there and what's in their local community. So at the time of our project being launched, Pathfinder was really trying to consider how to undertake a significant revision but not just to its website design, but how it disseminates throughout the state so that it would really expand its relevance and reach. So our evaluation project was designed really to provide a data driven way to understand how the disability and professional communities across our state could make accessing information and resources all the more easier. Erik Carter, Ph.D.: So we received a year of funding from the Tennessee Council on Developmental Disabilities beginning back in October of 2020 to really explore a series of six kind of core questions that we learned from about 3000 Tennesseans, their answers to these questions. They were: what experiences are most important to them, to individuals with disabilities and their families. Second, how familiar are individuals and families and professionals with the disability related programs and services in their community? Third, how do they characterize their experiences trying to locate what they need in terms of information and services? And then fourth, we wanted to know the primary go-to places where they turn for information that they need. And finally, to know what their recommendations were for how we could do this process all the better to identify the resources that they needed to flourish in all areas of their life. And of course, we were interested in how the answers to all of questions varied depending on where people lived and their vantage point and their family experiences as well. Elise McMillan, J.D.: Thanks, Erik. Emily, Erik just described a lot of valuable information, a lot of pieces of data, many people to talk with. How did the group design the project? And how did you land on really a mixed method approach? And if you'll explain what that means, too. Emily Lanchak: Sure. So we collected data primarily through two avenues: through a survey which had a mix of kind of multiple choice, multiple select and shortened answers. For that survey, there were eight different versions because we wanted to hear from all different stakeholder groups that are involved in the disability community. So we had a survey for individuals with disabilities, parents, loved ones, educators, state agency staff, disability providers, and organization staff and healthcare workers. So those eight surveys all addressed to the same research questions that Erik explained earlier, we just phrased the questions a little different. They were tailored to those respective groups so the wording made the most sense to whatever that set of respondents was, but we also wanted to include some focus groups. We know that the stories we wanted to tell, go beyond a multiple choice answer, and there's always a story or an experience behind that check box. Emily Lanchak: So it was important to us to represent that and give a voice to those experience, so we held focus groups with a sub sample of participants and it really just gave people space to go more in depth with their feedback. They could elaborate on responses that they had put in the survey, maybe provide additional ideas we hadn't considered when we were coming up with multiple choice response options. So in general, I would say the mixed method approach, meaning we had some data that we could pull numbers wise from multiple choice answers, but also have some quotes and testimonials really helped us capture and tell the story of Tennesseans Elise McMillan, J.D.: And Erik, why did you decide on so many stakeholder groups? Why was it important to think about them in different ways? Erik Carter, Ph.D.: Sure. You know, this is one of the largest projects I think I've ever been part of and was a big undertaking. But we realized that the experiences of those with disabilities might differ from those of their parents and from other family members, and that the experiences trying to find information or pass along information might differ from professionals who work in schools or in state agencies or in healthcare, or even in community organizations and advocacy groups. In other words, each of these stakeholders really does have a different vantage point at which they're looking at this issue in a very different kind of sphere of influence. So we know that people with disabilities and their families are looking for information and supports that help them live a flourishing life so we needed to ask them what experiences mattered most to them, and only they could answer that and the extent to which they were aware of resources that could support them in those areas and in their community. Erik Carter, Ph.D.: And on the other hand, we have professionals who are usually responsible for connecting individuals and families to those supports or creating resources or carrying out programs, and they're often this primary pathway for equipping families. So then we have to learn from them about what they know or don't know about what's available in their community or state and to try to pinpoint the barriers that they see in this area. So, as Emily said, we ended up hearing from these eight stakeholder groups, more than 3000 Tennesseans, nearly a thousand individuals with disabilities, a thousand plus family members and then again, another almost a thousand educators and agency staff and providers and healthcare workers. That network of stories and survey findings really helped us have a robust portrait of what it looks like in Tennessee to experience this process of navigating the system to find out what you need and who can help you. Elise McMillan, J.D.: So I'm still trying to focus on that 3000 people responding to your surveys, especially during the pandemic and we'll get to that a little bit later on in this discussion. But to achieve that, how did you go about developing the surveys? Was it the same for every group? Was it different for various surveys? Erik Carter, Ph.D.: That's a great question. I think the process was really unique. It was very iterative and involved just a back and forth with all of the right people who we felt needed to have the kind of input that would make sure the surveys one that people wanted to take and that the information would be really informative. So we started by sharing these overarching research questions, the ones I shared a little earlier in our conversation, and we started to look first at how this question's already been addressed in the literature. Of course, we quickly discovered that they hadn't really been posed very much in the literature so this is really new territory, not just for our state, but really nationally. So then we began to create survey questions that aligned with those research questions, and we created eight different surveys. Erik Carter, Ph.D.: Now, they all addressed the common topics, but they were just worded a little bit different based on who we were speaking with. Individuals and families were often speaking firsthand about their own experiences navigating these issues, but providers and professionals were talking about what it looked like to some support groups of individuals who might be on their caseload or that they support in some ways. But then what we did is we started to invite our partners and our community organizations into this process. Now they were there all the way at the beginning, but we ended up starting to meet with groups, in fact, 20 across the state that included folks from disability organizations and advocacy groups and day programs and service providers and agencies, and we asked their input on what question should we be asking? And how should we ask that in ways that would really resonate? Erik Carter, Ph.D.: And then of course, we took all those ideas and put them together in initial drafts of the survey and we piloted them with different people in our state: individuals and families and educators and providers. And we realized we worded some of the things pretty poorly and we needed to strengthen those. We gave us a confidence before we rolled it out statewide that we had really gathered the right perspectives from all the people who'd want to learn from the survey, but that we'd also posed things in ways that would be understandable and interpretable. So then we were just excited about the feedback and the roll out of it across the state, and I would say we would be thrilled to share those surveys with others around the country who are interested in replicating this work in their own state as well. We feel pretty good about the nature, the length, which we had to focus on keeping them short enough that people would actually do, and the depth of them as well. Elise McMillan, J.D.: Thanks. And that's a really important point, we do want our audience to know that we are very willing to share either more about the process of development or the surveys as Erik said. Okay, Emily, the surveys are designed, you've got the right questions, you know your stakeholder groups. Tell us more about the recruitment for this project. Emily Lanchak: Yeah, so kind of like Erik said, this recruitment on this scale was new for me to tackle statewide and our goal to reach as many participants as we did. So our survey was open for five months, we were able to do all the recruitment and get all our responses over five months. And I should say our 3000 number is the number of completed surveys, that means you made it start to finish. So we probably even have more responses on top of that of folks who made it part way through, halfway through, almost finished. So yeah, to encourage participation, we did offer $20 gift cards to a hundred randomly selected people but we also, which I think was unique to this study, we provided an opportunity for participants to request free resources so the topics we offered mirrored those in the survey. So as you went through the survey and realized like, "Man, there are a lot of places I could use some information or that I had trouble finding." Emily Lanchak: We wanted to still kind of check back in with folks and connect them with the resources that they needed, so I think that helped encourage participation. But I would say our recruitment efforts, I could probably describe them in three steps is really how we took. The first step is we came up with a master list, a mega list is really how we call it in our team of organizations, networks, programs, and we did that by stakeholder group. So our goal for the project was to build a survey sample that was representative of the diverse population across Tennessee, so we know of that our list needed to have a various range of different organizations. So we started just our team members crafting that list with our own knowledge of organizations across the state, then we tapped into some of our resources like Tennessee Disability, Pathfinder to just find additional ideas. Those partners that Erik mentioned that we met with to receive feedback about the survey, we also talked to them about recommendations for outreach, and we got examples and contacts from them. Emily Lanchak: So we really build out that list, and some of those places we went for recruitment are recreation programs, support groups, advocacy and education programs, schools, centers for independent living, cultural and community centers, libraries, social media was a big push for us. So that's kind of how we built the list. Once we had this large list, now it's time to invite these people to join with us and spread the work, so the way we did this was really just started by having conversations with people. We tried to set up calls or get them on the phone to really introduce our study. We wanted to have time to really explain the why and the purpose, but also the impact and what our vision was once we compiled all this data and had this finding. Emily Lanchak: So we found that to be really successful, just the opportunity to sit down with folks and take the time and explain to them why it was important and why we would value their time in participating, so we feel like that helped us reach a lot of people and get buy-in from our partners. Then we offered different recruitment options and materials to folks: we had flyers, we had language for a newsletter or an email, we had social media posts, we had all of that in English and Spanish, which helped. And then step three, I would say, came to kind of tracking it all. So as we got survey responses in, we tracked that all by stakeholder group and then we had also identified some important demographic characteristics that we wanted to be sure that we hit some goals for. So those were things like location, gender, different disability categories. Emily Lanchak: That allowed us to spend the last few months really targeting our outreach. So for example, one of our goals was to hear from somebody in all 95 counties so we were able to look at a map and look at different region or areas where we had low response rates, and then as a team and with our partners really brainstorm creative ways to reach those people. So in some of the rural areas, it was getting to libraries, putting ads in newspapers, connecting with their schools, so I think that helped us and gave us some time to really target populations that we wanted to hear from. Elise McMillan, J.D.: So everything you talked about is going on when we are in the midst of a pandemic, correct? Emily Lanchak: It is. Everything was done virtually each step of the process. Elise McMillan, J.D.: I'd be interested in knowing if you think that helped us innovate some new ways, did it make it tougher? Talk more about the impact of COVID and the pandemic. Emily Lanchak: Yeah, I think when we started this, we weren't sure how things would be impacted, and I would say, I think it had a positive impact and we were able to reach more people and really get a diverse range of perspectives than we would've had we been in a normal environment. I think the survey, we had three modes of the way people could complete it. They could complete it online, they could complete it paper pencil, or they could complete it over the phone with us. So I'm not sure that really had a large impact from the pandemic, but I think our focus groups did. We held these over Zoom so participants could join over the phone or from a computer or a tablet, and I think that flexibility and the flexibility having them virtually for our own team really was important and valuable. Emily Lanchak: It allowed us to reach all corners of the state, we could hold multiple sessions in one day and not be driving to east and west Tennessee. Since we're here in Nashville in the middle, we could provide accommodations to whoever needed them within our group. It gave us flexibility to split groups if we needed based on how many came, we could kind of have staff members on call and easy to just jump on a Zoom. We were able to hold groups with Spanish speaking participants, just that facilitation when it comes to the flexibility that some of these virtual platforms offer were really valuable. So I think we were able to take some of the difficulties of the pandemic and really they worked in our favor and we could work around them to reach more people. Elise McMillan, J.D.: And you mentioned 95 counties in Tennessee, and we were able to reach- Emily Lanchak: 94. Elise McMillan, J.D.: 94. I think we're still out looking for that last county, right? Anybody listening to this podcast who happens to be from Lake County, I think we're still looking for that response. Okay, we've had the survey, we've recruited, it's been out, we've gotten over the 3000 responses. Erik, would you want walk us through some of the major findings from the surveys? And I know in some ways we're still digging deeper into all of the results, but what are some of the major findings to this point? Erik Carter, Ph.D.: I mean, what a rich, rich sorts of information from this mixed method approach. And I should just, before I answer your question, begin by mentioning, we do have a full report available and it does summarize the findings for all of those research questions by stakeholder group and that's the best overview we have of the major findings. But let me just highlight a few key ones. I think first, we wanted to learn more about the experiences that were important to and for those with disabilities in our state. I think determining which of those experiences are valued most highly, that really does help organizations know where resources and information are especially needed. And the resounding finding was that individuals with disabilities want the same array of experiences that any Tennesseean might want; a good job, close friends, good health, safe place to live, involvement in the community. Erik Carter, Ph.D.: There's one parent who shared in the focus groups, "I just want my son to be able to live his life to the fullest." So that was one piece is just recognizing that the ordinary aspirations of anyone were also shared by those with disabilities and their families. The second though, is that the majority of people with disabilities and their families reported having a lot of difficulty finding the information and the help that they need in those areas that do matter most of them. Just over half, 53% of individuals with disabilities said it was somewhat or very hard to find the information they need and that was true for 75% of parents. A lot of times it was like those areas where they needed help, they just didn't know where to get it, they were unsure of maybe where to start. Erik Carter, Ph.D.: They talked about the difficulty finding resources, even when they knew what they were looking for. And then other times just talked about how little might be available in their local community, particular rural communities. The third finding was that's actually the same story we found for many professionals in our field. There's one special educator who said, "We just don't know how to ask or who to ask." And that's quite striking because professionals really are the key source of information for so many individuals and families, particularly when they're in the school system but even beyond that, and yet they also struggled to find the information they needed to guide their work or to pass on to families. And when we asked them about the things that make get hard to find that information they need, they talked about just limited resources in their own community. Erik Carter, Ph.D.: They talked about the credibility of information sources or the scattered nature of information, or just the difficulty actually making connections to those service providers. Then fourth, we wanted to learn of course, about where people turn or information related to disability. As you might expect, their internet searches were kind of the major primary choice for all eight of those stakeholder groups, and then social media was second for individuals and families followed by doctors and medical professionals. For educators and providers and state agencies, their go-to sources of beyond the internet was that colleague down the hall or going to a conference or workshop. But the answer is really widely and it was really clear that folks are turning to a wide range of sources in their pursuit of information, some trustworthy, but others may a bit more uncertain. Then finally, big takeaway is that parents talked about a whole... participants rather talked about a whole array of ways that information could be shared more effectively with them. Erik Carter, Ph.D.: And they affirmed the importance of web-based clearinghouses like Tennessee Disability Pathfinder, and they also talked about wanting things like an app on their phone or live chat features where they could get answers to questions in realtime or printed resource guides, particularly in rural communities and on and on. Some suggested podcasts, even like the one we're on now, although that wasn't sort of the primary ways they suggested it, but that gives us snapshot of what we learn and of course there's so much more that we could unpack. And for that, the teaser is you'll want to read the full report. Elise McMillan, J.D.: Thanks, Erik. And Emily, you talked a little bit earlier about the different ways that were used to collect the information, but could you talk about the addition of those focus groups and how that really deepened our understanding in some of the areas that Erik just covered? Emily Lanchak: Yeah, absolutely. So we held focus groups with over a hundred participants, so over a hundred people that had taken the full survey, volunteered for a focus group and were able to meet with us. We met with people from all the three major stakeholder groups, so individuals with disabilities, families and professionals. So as I touched on earlier, I think the groups really just provided the opportunity for folks to expand upon their answers. Really what I mean by that is they were able to share specific examples with us, describe an experience, but really tell a story that kind of captured the essence of what their response was, and then really to go into detail about those recommendations and suggestions. So besides just saying, "Oh yeah, an app, I'd definitely use that," they could describe to us what they wanted that up to look like, what features would it be, even go as far as to tell us kind of what platform. Are they using apple products? Are they looking for something on an Android device? Really just dive deeper. Emily Lanchak: So we asked them to expand upon questions in the survey, but it also allowed us to go a little bit further. So we asked folks to describe to us why there are certain sources that they rely on and trust? What is it about that doctor? What is it about that particular website or organization that keeps you coming back and looking there first for information? And then we could spend a lot of time talking about impact, so we could really folks to describe the impact on their lives of when they struggle to find the help that they need; how could their lives look differently if they had all of that readily available to them? So I would just say deepening our understanding and really it enhanced our findings because data and numbers doesn't always capture the emotion that exists behind that. Emily Lanchak: So I think the story that we told feels more personal and impactful when we are able to share quotes with the audience, so I know in our report we pulled out some quotes. When we talk with and do presentations like this, we're able to really just pull out some of those stories that feel more impactful. So I had pulled a couple that I thought I might share with you all that kind highlights what I was describing, so I pulled one from each stakeholder group. So when we talked with an adult in her forties, an individual with multiple disabilities, and we just asked her about what was most important to her right now, her response was finding a purpose and she told us how she just still grieves for a purpose. Emily Lanchak: Similarly, when we talked with a mother of a 24 year old with IDD and she was talking about her experiences finding resources, she said, "For me, I would say it's almost a full-time job. It's more than a hobby, I can tell you that. There may be programs available and information out there, but it's a full time job. And when you're a single parent with two children, who has the bandwidth to chase that down when the most important thing is to provide a stable home and food?" So that's an example of you're not going to capture kind of the emotion and the experience just by her checking a box that says it's hard, so it really adds more to be able to hear her why and describe the impact on her life. Emily Lanchak: And then one of my favorites from an educator echoes, again, the statement Erik had shared about not knowing who to ask. She described how she shares information and says she shares information in an IEP meeting, but besides that, it's usually like putting out individual fires. "When one family has a need, I research it and send it to them. When another family has a different need, I do the same thing. I'd like to be proactive, but I just don't know how." Elise McMillan, J.D.: Thanks for those specific examples. I think I remember you saying that it was no problem at all to get people to participate in these focus groups. In fact, I think we had more people than we could actually involve in the focus group. Very unusual for recruiting for groups, right? Emily Lanchak: Yes. This was a just, I think, a topic that really resonated with people and is something that impacts their life daily and they are just looking for a space to kind of share those stories. But on the flip side had some really great ideas of how to make it better and improve the system so we did walk away, I think, feeling encouraged that while there are struggles and barriers to finding what people need, we had a lot of great ideas and creative methods to hopefully think of some solutions. Elise McMillan, J.D.: Erik, how have the findings from this project been shared with key partners? And have you seen it already begin to shape some of the work going on in this state? Erik Carter, Ph.D.: Sure. Throughout the whole project, we have met monthly with a leadership team that is really comprised of representatives of all the state agencies, some of whom actually financially support Tennessee Disability Pathfinder. So we've continued those meetings throughout the data collection and then following, since finishing the study, we've met bimonthly and that's the time where we share these snapshots of our findings and use that time to discuss their implications for our individual work as agencies and our collective work together. We've also developed an internal report that addresses some of the implications that are specific to Tennessee Disability Pathfinder, and that's really helping to shape its ongoing work and strengthening. But likewise, we have an external report that we're used to spur some conversations among state agency leaders that really outlines some of the key implications in all those areas that we've addressed. Erik Carter, Ph.D.: We've also really encouraged agencies to suggest sort of supplemental analyses that they might find helpful in their work. For example, looking at some of the data based on urbanicity, like are there differences in rural or urban communities or by particular disability groups, for those who want to know sort of how do the responses might look different for those on the autism spectrum, for example, are those who have mental health or behavioral health related needs. So it's a chance also to invite different groups to say, "Help dive deeper. What are the questions that we could help you answer with this data set and inform your work?" Erik Carter, Ph.D.: And of course we've been making presentations to different groups and agencies, state agency staff, community groups, our Pathfinder team, we plan to do some webinars as well. And I think that there's a lot of data in this study that is also useful in advancing advocacy work as well. When you have data from more than 2000 individuals with disabilities and their families about what matters most to them, that's really powerful data to use at disability on the hill or advocating for particular policies or new programs. So we have been really intentional about reminding everyone that this is our collective data, we share this, and how can we help you better tell stories with these data than you might have otherwise been able to do without it? Elise McMillan, J.D.: Erik, what advice would you have for other university centers or similar projects who want to undertake a study similar to this? Erik Carter, Ph.D.: I think it's a good idea to have kind of a bold goal here. We began with this goal of... I think it was reaching more than 2000 and was our original goal. We're not advising that there'd be another pandemic, but certainly that helped. You know, we set an ambitious goal and I think that really rallied our partners, all the recruitment partners, to help us achieve that, I think that was really important. Second of course, is do this collaboratively. We are much richer because we designed this project in partnership with so many different groups. I mean, Emily talked about the way that enabled the recruitment, but it sort of led to a level of buy-in that I think is pretty rare often in these kinds of studies. And then third, engage with researchers who are at institutions you're affiliated with who might have an interest in helping you design surveys or focus groups or help analyze it. Erik Carter, Ph.D.: I think that's one of the great partnerships of universities with state agencies, with disability organizations, and the value of you said being embedded in a university is there's lots of help you can gather if you are not sure how to design a study of this scale or scope. Fourth, I would recommend that you don't reinvent the wheel as you think about designing a study like this. Borrow measures from us, adapt them as you see fit. We also try to find others who had asked these questions in clever and effective ways and borrowed the best of their questions as well, and I think that makes a lot of sense is to learn from what other states have done and borrow the best of what's worked for them as well. Elise McMillan, J.D.: Thanks, Erik. And Emily, for those who do want to find out more about this study, can you help us with that information? Emily Lanchak: Yes, you can visit our website where a copy of our report can be found and that's tndisabilitysurvey.org. Elise McMillan, J.D.: Thank you. Is there anything else that either of you want to share about the study or the project that you haven't had a chance to share today? Erik Carter, Ph.D.: Well, two small things. One is I just want to emphasize what a joy it is to work in a state that has such strong collaborations within and beyond the university, across our state systems. That's been a real pleasure to carry out a study like this where there is such broad investment, so we're really grateful to all of our partners there. And then I think the second is just there's such power in seeking data driven answers, data based answers to these kinds of questions. There are such important patterns to be found in hearing hundreds of people's stories or seeing thousands of people's surveys. So it's a lot of hard work, it may seem like it's extra that's not needed to develop kind of rigorous measures in these broad recruitment approaches, but you get a different answer when you do that, a deeper answer and one that I think is much more actionable so I just say it's really is worth that effort as well. Elise McMillan, J.D.: Thanks, Erik. Emily, anything else to add? Emily Lanchak: Yeah, I think I would just echo what we've said and Erik said earlier of just inviting members of the community to be involved through every step of the process, I think has just been so valuable and rewarding in this study. We've just gotten feedback and I think people who have taken the survey and been part of the focus group and part of planning meetings just feel very invested in it and then grateful and excited to work with the data now and findings now that we have it. So I just think that has been great and I would encourage others to consider that when they are doing research of how to involve those stakeholders in your process throughout the process. Elise McMillan, J.D.: Thanks Emily, such important points. Well, I want to thank you, Erik Carter. Thank you, Emily Lanchak. Thank you for joining us this conversation today. Erik Carter, Ph.D.: Thank you, Elise. We are just thrilled to be part of this and thrilled to work with you on this project as well. Speaker 1: Thank you for listening to the Promise of Discovery. Be sure to visit the Vanderbilt Kennedy Center website at vkc.vumc.org to learn more about today;s episode, and tune in next time for more on the innovative research and intellectual and developmental disabilities from the Vanderbilt Kennedy Center.