This Vanderbilt Kennedy Center Conversation Series on Research in Intellectual and Developmental Disabilities was presented on October 24, 2023.
It can be difficult for youth on the autism spectrum to get the services they need after they leave high school. The Individuals with Disabilities Education Act (IDEA) ensures that youth with disabilities (including autism) are eligible for mandated services through the school system until the age of 22 years or until they exit high school. However, after high school exit, these youth encounter an adult service system that is often inadequately funded and difficult to navigate. To make matters worse, studies have shown that individuals from underrepresented racial or ethnic groups and those from families with lower incomes are even less likely to receive the services that they need. Because of this, many caregivers have expressed feelings of being overwhelmed and ill-equipped to advocate for their young adult with autism after high school.
Join us as we talk with two researchers who took this feedback from families into consideration and developed a 12-week advocacy training program to help parents and caregivers learn how to best advocate for services for their young adult on the autism spectrum.
Presenters:
- Julie Lounds Taylor, Ph.D., Associate Professor of Pediatrics and Psychiatry & Behavioral Sciences; Co-Director, Vanderbilt Kennedy Center for Excellence in Developmental Disabilities (VKC UCEDD)
- Meghan Burke, Ph.D., BCBA-D, Professor of Special Education
- Jeff Neul, M.D., Ph.D. (Moderator), Annette Schaffer Eskind Chair and Director, Vanderbilt Kennedy Center; Professor of Pediatrics, Division of Neurology, Pharmacology, and Special Education
Transcript
- Hello and welcome everyone. My name's Jeff Neul. I'm the Director of the Vanderbilt Kennedy Center, and thank you for joining us for this community conversation. This series is a way for us at the Vanderbilt Kennedy Center to engage with our community partners to discuss new research and relevant topics and intellectual and developmental disabilities. And really this is a forum that we want to be engaging, and get input because we value the community input on what is happening and the conversations around important topics and research. Tonight I'm excited about the topic which is advocating for supports to improve transition for autistic young adults, which is recent research that's been going on for a long time by my guests and friends, Julie Taylor and Megan Burke. And so I'd like to let them each introduce themselves first. So Julie, would you like to start?
- You bet. Hi, everybody. My name is Julie Taylor. I am an Associate Professor of pediatrics at Vanderbilt University Medical Center, an investigator at the Kennedy Center and the co-director of our University Center for Excellence in Developmental Disabilities. And my research over the past 15 years or so has really focused on trying to understand how to improve outcomes for adults with disabilities, mostly adults on the autism spectrum and their families. And a lot of our work really focuses on this transition from school to adult services and how to make that transition go a little smoother.
- Right. And Megan, would you like to introduce yourself?
- Sure. I'm Megan Burke. I'm a new professor here at Vanderbilt. I'm in the Department of Special Education. I just moved here from the University of Illinois at Urbana Champaign, where I was a professor of special education there as well. My research looks at how families navigate and access services primarily through how they advocate for services for their family members with disabilities. Yeah, I think that's about it.
- Excellent. Go alumni. Being an alumnus of the University of Illinois myself. So anyway, you know, this is the, it's such an important topic and it's such an important thing to think about, and I think it's really, there's not enough attention paid to this in thinking about people with autism and growing up and how to maximize transition from school-based life to adulthood. And of course, we all go through these challenges and there's unique issues faced by people who have autism. So I'm curious to know what was the genesis of this project and what were the goals and what were you trying to achieve?
- Well, I can start with that. So this project really came from what we were seeing and what families were telling us in our research project. So I'm not trained as an intervention scientist. I don't know that I ever saw myself doing trials and interventions out in the field. I'm trained as a developmental psychologist. So we do a lot of studies where we follow people over time and we try to understand how people grow and change and understanding how to put people on trajectories that are positive across whatever you're looking at as a developmental psychologist. And so that's kind of what my first project was here at Vanderbilt. We brought in a sample of young adults, autistic young adults who were all in their last year of high school. And we followed them for three years. And this was back in probably 2010. It was really before we knew a whole lot at all about where autistic youth go when they leave high school, do they work? What is associated with things going a little smoother versus not. So we just took a really, really deep dive in following families over time to try to figure that out. And I think learned a lot from that study. But one of the things that was pretty clear when families were coming in in their last year of high school was that they knew that there was this huge transition looming for them. They were about to move from school-based services and supports to the adult service system. And it became very clear that families were really getting not a whole lot of information about what to expect and about how to make that transition smooth, and what services might be helpful. They were getting some handouts from school but families were really overwhelmed by this. And it's a lot, the adult service system is really complicated. So we were seeing this in our research studies and families who were sort of seeing this big transition looming and weren't quite sure how their center daughter was gonna get what they need when they make this transition out of school based services. At the same time, I was getting to know Megan when she was a doc student here and talking with Bob Hodap, who's a professor in special ed and was Megan's advisor. And Megan had developed this program called VAP, the Volunteer Advocacy Program. Which was about training advocates about families rights under special education law. That's all I'll say about this Megan, because you know, it's way more than I do. But it was sort of this idea of bringing people together, talking about what services might be there, what families' rights are and really helping families understand or helping people understand how to advocate for services and supports. And it made me think, wouldn't it be cool if there was a program like that for families? But instead of being about school-based services and supports, it was about adult services. So we can really help families understand the range of things that might be available, how to successfully advocate for those services and connect them with some of the people that might be helpful there. So that was kind of the idea. We wrote a pilot intervention grant to the National Institute of Mental Health, kind of pitching this idea. And they took it, they bought it. And so we developed the program, which was really hard. Megan can probably talk more about that to kind of take all this information about adult services and distill it down into something that was actually digestible for families. And we've been testing it. So we tested it first in Tennessee. Then we got a larger grant to develop an iteration of this project that was not necessarily specific to any one state but could be used in multiple states, and we have been testing that now in a larger study across three different states. Megan was a side of that project in Illinois, and now we're thrilled to have her here so we can work more closely with her and see her in person. That was a long answer to your question Jeff
- No, it's great. And Megan, can you maybe fill in how this got started, this idea of advocacy and teaching this to identify things, even if it's starting with the school age and then thinking about in the transition?
- Yeah, so Julie did a really nice job kind of explaining, hearing from families what the needs are as they enter into adult services. When I started graduate school here, I met with a lot of different agencies, very much at the encouragement of Elise McMillan when she was the USAID director, to really get a pulse on what are the needs in the community, where are the gaps, and where can the USAID and the Kennedy Center kind of fill in those gaps to meet the needs of families? And one thing that kept coming up was the need for advocacy in special education services. Families and organizations were saying there's no one to go in there and help us advocate at school meetings for services, and we'd really like somebody to fill that role. So from there, the VAP was kind of born and we piloted it over in the Vanderbilt Children's Hospital. We had 12 participants the first time we did it. And then we started running it twice a year, and we started running it at multiple sites across the state. And it's just grown every year really demonstrating the fact that parents are interested in learning how to advocate for services. They think this is a really valuable way to be able to access services for their youth. And even though parents are very busy people, especially parents of kids with disabilities, they are willing to commit 24, 36 hours of their time to understanding a service delivery system and learning these skills because they think it's valuable and it's gonna make a difference. And so, just like Julie said, recognizing the success of it not just in Tennessee, because the VAP has been replicated in two different languages. It's been replicated in Spanish and in Korean and across multiple different states. So seeing that model and saying, can we apply this to something that's actually much more complicated than school services, which is the adult service delivery system, and that's kind of what it was bore out of.
- And so when you think about how to identify what would be the features that would go into this training, especially for this transition to adulthood, how did you go about deciding what were the content and important things and important issues and features to incorporate in this training to migrate from school-based services into this adult transition?
- Yeah, that's a good question. I will say in the initial grant that Julie mentioned to kinda get that pilot funding, we had a great community advisory board, and on that board we had parents of youth with autism, we had self-advocates with autism. We had practitioners who were in the field working in different areas of the adult service delivery system, and we had national experts come in. So Carol Abdul at the time was the social worker for the Kennedy Center and I kind of locked ourselves in a room and went through the research and really mapped out what we thought the scope and sequence of the curriculum would be. We took that and we presented it to our community advisory board who gave really good feedback of what they thought would work, what they thought wouldn't work, what were we missing, what did we need to touch on more. We took that back and revised it pretty heavily. And then we went through and we did almost like a pre-pilot before we did the pilot with about 12 to 15 parents. And taking really careful data to understand not only is this effective, but are we hitting on the right things? Are we touching on the right topics? Are we spending enough time here? And really thinking about the context of autism being a spectrum. Are we making sure that we're spending enough time on certain things that may apply more to somebody with more significant support needs and less to others and vice versa? And that was something that we listened very carefully to our families to understand what do we need to tweak as we kind of graduate this up to a larger study. And then from that study that was just done in Tennessee, we said, okay, this seems to work in Tennessee. And like Julie said, what can we do to make this nationally relevant? And when we got to that particular larger study, we spent a year across the three states thinking through how do we make this nationally relevant but still meaningful in every state? We had people on our committees who were, again, practitioners, self-advocates and parents giving feedback to really make sure that we were getting it right. So we took quite a bit of time in thinking that process through.
- I have to say a lot of our, you know, not only have we had a lot of involvement from sort of different community members in sort of more advisory roles and on our project team, but our research participants, the people who take the program have been very generous with their feedback to us. We ask for it and they give it to us. And it has really revamped and we revamp it every time I think based on, I mean, every iteration, every different way that we do it, because they have been really, I think they're being honest with us. They certainly have given us a lot. You know, sometimes they'd say that things go great, but sometimes they say it would be a little better if it was this way, or this topic didn't really hit home, or this topic maybe should come at a different time. And we really, I think, use all of that feedback to guide us because we wanna make sure that we're are providing the information to families that are gonna be the most valuable. So yeah, I think all of that feedback not only from our people that we partner with, from sort of the development side but as we're going about doing this in groups we're always asking our families and our participants like, so how is this, did you like it? Did you not, what would've made it better? And really trying to take that to heart.
- Yeah, I mean that's so critical and I think that it seems like this is... I've seen the movement of how people think about questions and topics and things, and doing these sort of engagement of community partnerships to understand the needs and the approaches and be directed by that. And it's so valuable. I think about things that I've done and this started a long time ago, and I wish we would've done a lot more of this when we started, right? I mean it's so important and obviously it seems like it helped really guide you all to create a set of content. It was valuable. And part of this thinking about when you are looking for that sort of input, how do you identify people? These community partners and collaborators and families to participate, and how do you engage with them to get this input because it's their time, like you said, it's their time, right? And everybody's time is valuable. And so what kind of ways did you do this?
- So I'll start first Megan, because we may have had different experiences with this or maybe not. But let me say, I am so spoiled to be trying to engage the disability community here in Nashville and in Tennessee because we have such close ties at the Kennedy Center with our local disability community, with our state agencies, with our other organization groups and we work really well together. So people from the community, not only people who gave us feedback on the project, but people who served as sort of guest speakers and so Assist and VAP both really rely on people in the community to come in and present the information in each session. So in Assist we give people learning objectives, but the information changes so much. And the devil's in the details in these things that, you know, you really need somebody to come in and give families the most current information and really the most up-to-date information about how to go about getting services and so we have really relied on our partners to do that. And that's a big part of the program across all the sites. But on our site it was easy because we have such great connections with our disability community here, and they're so collaborative and they've been so generous with their time that sometimes finding the person who could speak to a specific topic was tricky. But you know our connections that we have had that I think have been, that have been fostered by Elise McMillan as the USAID director and by you Jeff, and just people who have been here for a while and working with the community for a long time, we're really able to benefit from that and assist in terms of getting feedback from people who trust us, that we trust that can be honest and that know that we'll listen and we'll try to return the favor when we can.
- Yeah, I think you're exactly right. And I also think it really speaks to, there was a huge need for this advocacy program. I mean, people were hungry for this information, and I think you see that in the recruitment. Like none of our sites had an issue recruiting enough families to participate in the study. I'll probably never say that again for the rest of my career, but for this particular study, we filled up over 180 slots across three states very easily because this is really meeting a need that parents are wanting this information and seeking this out, and there's just not many other programs that meet this particular need in the community. So it was relatively easy to find community collaborators who would be interested in this. And I think the other nice thing about this project is the sustainability piece of it. So each of our states worked with community partners to implement the program, which then meant they had some ownership in the program. They were with us from the beginning, giving input, developing the program. We had their feedback informing everything every step of the way, so they feel like they are owners of it. And I can say right now in Illinois, we worked with the autism project there, they continue to offer the program once every year to families across the state of Illinois. So this is such a nice example of an intervention that seems to be working that's really effective, that's meeting the needs in the community, and it's able to be sustained beyond the scope of the grant, which is exactly what our goal was when we set out to work with community partners and it's exactly what we've been able to achieve.
- Yeah, I mean, I hear this when we talk to people big concern as you come in and you provide some sort of intervention or service that's awesome and then it just, it vanishes. And it's so important to think about from the onset, if this is successful, like how does it get sustained when this federal NIH grant or whatever goes away because it's not helpful if it's a useful thing but it just doesn't keep going. So did you think about that at the start, like sustainability? Like, was that at the onset, was that a goal to think about?
- Yes.
- So this is where, yeah, Megan would say yes. I would say I was a little slower to come to that. This was where actually the grant review process actually I think worked in the favor of sustain. And for those of you on the call that don't have to write research grants to get these things funded, you submit this grant, this project that you've worked really hard on that you think is wonderful and is gonna change things. And then you have reviewers who look at it that oftentimes maybe don't like certain parts of it or kind of pick things apart. And sometimes you look at that and you think, ugh, they just didn't get it, or this was just it. And then sometimes you look at what the reviewers say and you think, okay, that's a good point. And we had reviewers for this project that really pushed us to think about sustainability. Basically we sort of skipped some steps in the intervention development process to go right into kind of sort of implementing this in the community. And the reviewers really pushed us to do that and said, you know, we don't really care if this works in a really tightly controlled setting if nobody else can ever do it again after your grant is done. And so I think we listened to that and we were like, well, all right then let's give it a go. And so I think that was actually one case where I was wrong and the reviewers were right in the initial grant, and they really pushed us in that direction, and I'm really glad they did. It made it harder, I think, in the developing and the starting it. And that was a little overwhelming at first, but then when we get on the backend we have, again, we have something that we've had an eye towards sustainability from the start, and that's great. So I think Megan is always looking at sustainability and the things that she's doing. So she was coming at it from that eye. I had to be kind of pushed that way a little bit more. It was a little bit more outta my wheelhouse with the research that I've done in the past but I am looking back I'm really happy to have that push.
- Any comments, Megan?
- I mean, yeah, I think that's my background. As previous to graduate school, working at a parent training and information center and training parents about their rights is like, it has to be something that's sustainable and it's in the community. And I just knew that agencies would be interested in this. So when we thought about scaling it up and I was in Illinois, immediately knew who our community partner was gonna be. They were immediately on board, they were thrilled to do it. And they enhanced the project so much because that community partner, the autism project, they are staffed primarily by parents of transition aged youth with autism. And they really pushed us to think about how to make sure that this is gonna be worth families' time and that we were gonna do something that was gonna be really effective and feasible. And it just enhanced the project so much. And I think that's one of the best aspects of this project is that they continue to offer it and they have built it into their scope of work. So they're offering it once a year to families, that's huge and I think is a huge testament to kind of the importance of the intervention.
- I'm curious about how you approach the sort of transportability or translatability, I mean, as Julie said, yes, I'm proud, not that I can take much credit of the relationships that the Kennedy Center has with community groups and collaborators here in Tennessee. But you know, when you think about moving this concept to different places how did you approach that and what were the challenges and how did you figure out ways, I mean, as you said, multiple states different languages, these all represent unique issues. Services are different in different states, and so I'm just curious how you approach this and thought about this.
- Well, we spent a year approaching it and thinking about it because it was really complicated. You know the specifics of a lot of the services are very different from state to state, right? And the details and the specifics are what are really important here. I mean, certainly the big picture is important for families to understand that, but they need more than that, right? And so we spent a lot of time trying to figure out how we could do this, how we could have a program or a curriculum that had some sort of, was manualized in some way, but also allowed for sufficient could be adaptive, that could be individualization I guess, sufficient individualization to actually sort of have people presenting the information that's relevant in that state. So what we ended up doing is we took each session and we sort of divvied it up into like nationally relevant information and then state specific information. And the nationally relevant information was often just, sometimes it was just defining what it is, what is a Medicaid waiver, what are you waiving, how is that different than Medicaid health insurance or long-term services and supports. I mean, these things are tricky. And so that was sort of like, no matter where you are, those definitional things are the same, what are the different types of employment? Different things like that. And then, so we developed that content and then we actually recorded videos of sort of our, we call them hosts, but they were parents of people, parents of young adults who are autistic, who kind of did this sort of conversational back and forth, sort of talking through like, oh, well what is a Medicaid waiver? You know, and they would kind of go back and forth. That presents really sort of the background of that topic, sort of the basic foundational information that's true no matter what but it's really necessary to kind of understand what's to come. And families really liked those videos. I was so happy we have... Hosts are people who are familiar to many people here in Tennessee, in our disability community in they're, they just did a really, really great job and families really liked those videos. And those will be resources that we'll have now, I think we're gonna put 'em on our USAID website here so we'll have these background videos. And then we develop learning objectives for the state specific information where we kind of develop walked through sort of the specifics of what families would need to know in that state. Now the actual information within those might be a little different, but the learning objectives were the same across different states. So we would share those with our local experts ahead of time. They would see what's in the videos and they would know then sort of the general things that we were asking them to cover. And then we studied it, we looked to see did local experts actually cover the things that we asked them to, was that different in different states? And generally it was. We saw really nice treatment fidelity across our different states. Even when we allowed our local experts to cover the information in the way that felt comfortable to them, in the order that they wanted to cover it. In almost all cases, they covered pretty much all of that information and did a really nice job of it. So that was sort of, I think the biggest challenge. Megan I don't know if you agree. Was really just trying to figure out how can we have some sort of standardization and have some sort of manualization of this when the very specific information is going to be so different across the different states. And families were basically getting the same types of information, even if the specific details were different across our sites.
- I will say just one thing. Those national videos it'll be great when they are posted on the USAID website because they are very, very helpful to families and they're short and they're digestible. But one of the other things that families really liked about those videos, in addition to the hosts is that in every video there's a family story. And that's a real family story with that particular service that we're talking about, where they here exactly how the family navigated that service, how they accessed it, what were the challenges and how they overcame them. And those family stories really resonated with the families who were watching the videos. I think they're very powerful.
- And we also chose real, I mean, they were real stories too. So some of the stories were kind of like, this was a really tricky thing. Here are the things that we did and now look like we've been able to kind of work this out. Sometimes they were like, they were the stories where we're like, this was really hard and here are the things that we've done and we're still not there yet, but we're working on it and we sort of know where to go next. So I think there was a range, people were sort of in different places in their journeys about the different topics that we talked about. And that I think was also, we had families that would come in that would say, oh, like I thought it was just me who was having a hard time with this and you are too, and they were too in the video. And I think it was really affirming to families that you're not doing something wrong and you're not like, messing this up. This is just hard and you just have to keep working at it.
- Yeah. And just a little sidebar and we'll get off. I have a couple more questions about things, but you know, it's interesting to hear about the process of doing that and the learning that you had. And I'm curious, do you think you've developed sort of like an instruction and a manual of how other people could transport this? Like if I say like, here are the steps you go through in your state and in your community to try to do these things, right? To try to set something this up.
- So at least in theory we haven't tried it yet outside of states that we have been, that have kind of participated in our research, but we have a manual and all the materials that we have vetted and looked ad nauseum many, many times and tweaked it to go back and see where things are not clear. I think we'll probably talk about this later, but we had really set out how we were gonna do this project and then COVID 19 hit, and then we had to go back to our manual again and figure out how to. And before we sort of put this out in the world, our next step is to have a couple people who have not been involved in the research up to this point, read through the manual and the materials and say like, okay, I feel like I could do this by looking at what you put out, or these are the things that weren't clear to me based on what you have. So our idea, the idea would be that kind of when the research is done and when the project is done, we have kind of a package with a manual, with these videos, with sort of the different materials and things that somebody from another state could then pick it up and know how to deliver the program. So yeah, that's the hope. That's the ideas is that, that it'll be useful in other places and that we'll have the materials and the trainings developed for people to be able to do that.
- Yeah, I mean, most definitely. I mean, we've sort of, we haven't really got to what you found... Because I've been very interested in about this process, but it seems like a big part of this and a big thing to promote and to publicize and to disseminate is the process and how can implement this and the instructions of like, okay, we did this in one place and now we've done it in a couple other places here's a manual, an instruction manual on how you might do it in your place. You know, I think that that's so valuable. When you were all talking, I kept thinking about the adage, you know, all politics is local and I was like, all advocacy is local. Like you have to understand the context that you are in and what the systems are and stuff, and identifying those things in your local environment and then adapting this curricula and this intervention to be adjusted to that scenario. So that local scenario seems to be so important.
- And the people, I mean, I think another thing that's really nice about Assist is we bring in sort of these experts from the community. So we have people from the Tennessee Disability Coalition who come in and speak, or people from, you know, vocational rehabilitation and all of our guest speakers, we don't require them to do this, but every single one so far has been willing to share their contact information. They'll have it at the end of their presentation. And we oftentimes have it in sort of the packets for families. And so families have someone that they can ask, that they can talk to about some of these topics that knows how it works in their local area, and I think that's a really nice. I think it helps families feel a little less lost. They don't have to know the answers. They have all the materials from the program, even when it's done, but they also have someone that they can ask questions to if they want to. And so those connections I think are really, really valuable to have.
- And you talked a little bit about what were the inputs to guide what were going to be the intervention, but walk me through a little bit about what was the inter... How was that structured? The intervention itself, the actual training and stuff, like how did that happen?
- So kind of where we... It was a little bit different for the Tennessee specific versus the national one, but I'm gonna talk about the national one because that's what... But so it was 12 weeks. Each week is about a different aspect of the adult service system or about adult life. We start every series with a talk about person-centered planning and thinking. And we really try to, throughout the whole entire series and sessions really because we're talking mostly with parents, not necessarily with the autistic youth, but what we really want is for parents to be using this information in a way that's helping get their son or daughter closer to their own goals, right? And so we address that really directly in the first session and we come back to that throughout. So we really try to have families if they haven't already sort of had a foundation in sort of person-centered thinking and sort of approaching this information from the perspective of their sons and daughters, hopes and goals and dreams. That's what we always start with for Assist. And then we just start walking our way through the different pieces of the service system. So we may talk about health insurance, public health insurance, we talk about job supports and different ways to get job supports and different types of just employment options regardless of whether the supports are there or not. We talk about income supports and social security and all of the ins and outs and trickiness of that. We talk about post-secondary education options for people with a range of abilities. Housing. We talk about housing options. We've added in with feedback from our community partners. We talk about enabling technologies now, we hadn't talked about that earlier in our housing section, which I think is a really cool addition. God, what else did we talk about? Well, mostly that, and then we always end every series talking about advocacy. And we have a whole session that's just talking to parents about how can you sort of have these conversations in a way that's gonna be effective in terms of helping get your son or daughter what they need. And we talk about advocacy not only for their sons and daughters, but also thinking about how they might advocate on a broader scale either for other families or maybe even in institutions and systems. So we talk about a lot and all the information, a lot of it builds on each other. And so we kind of come back to different topics as we move forward 'cause they're related and there's a lot of overlap between the different things that we talk about too. But those are the different areas. Megan, was there anything that I'm forgetting?
- Talk about special needs trusts and--
- Yes, that's right.
- Ways to kind of protect financial assets so you don't lose your benefits. And we have some really fabulous experts come in talk about that, because that's very complicated. We also talk about decision making.
- That's right.
- Quite a bit across our particular states. So really thinking through what options you have available and supported decision making. And we do have a special session for secondary education. So the age range for this project was parents of 16 to 26 year olds, which means that school services could very much be appropriate and applicable to some of them but not all of them. So we have that session as kind of optional for families to attend to learn more about what the school can provide in terms of transition.
- And we tried to have that be, this is another thing that we had to figure out what to do with a lot of feedback about this topic, but we tried to keep as many sessions not optional as possible. That was a pretty obvious optional session because I think oftentimes people don't realize the services and supports that might be relevant for their sons and daughters. So families would say like, I don't know, my son has an intellectual disability and post-secondary education is not gonna be an option for them. And then they come to the post-secondary education session and realize, wait a minute, there are quite a lot of programs now that are there for people who have an intellectual disability or somebody might think the vocational rehabilitation isn't going to be an option for their son or daughter because they're going to college and then they find out, wait a minute, we can use some dollars from voc rehab to potentially help out in college. So what we've realized I think is you don't know what you don't know. And so when people sort of choose sessions, they may actually not attend sessions that could be really helpful for their sons and daughters. So we encourage families to come to every session, even if they think it might not be relevant except for the secondary education session, the high school session. Because if somebody... If your son or daughter has left high school, that really is not relevant for you anymore. But we've thought a lot about that because there's such a tremendous range when we're talking about people who are autistic and there's a tremendous range of outcomes and we've really tried to think a lot about whether we should be grouping people with similar characteristics or how we wanna do this but what happens at the end of the day is that there are so many people that fall in the middle, these groupings aren't natural and they don't sort of come easily and we've never been able to find a way that makes sense to sort of say, well this information is relevant for these people in this because people just don't fit into neat buckets like that, nor do services. So we sort of err on the side of getting people as much information as possible and really helping them think through how that might be relevant for their sons and daughters.
- So it was over 12 weeks, this all day class every day for 12 weeks or an hour a week.
- Once a week for two hours.
- For two hours. I see. And this is sort of a interactive, didactic or how is it structured in terms of.
- It's interactive, but I think the other important piece of it is that it's in a cohort. So it's parents of kids transitioning age youth with autism learning together about adult services. So they were able to ask questions that other people they had that question too, and they were so glad you asked and they were able to connect with one another. Like, oh, you've been through this, can I talk to you? We had a lot of cohorts who went through the program who by the 12th session they said, let's start a Facebook group so we can stay in touch. Let's get together and have a graduation party. Because a lot of the parents who went through the program really felt like they didn't, they weren't connected to other parents of youth with autism. And so they were really looking for that peer support and that's why we offered it in a cohort model, and we saw that that also seemed to be sustained after the program ended so they could continue to learn from one another.
- But I guess like for nuts and bolts, Jeff, of how, so people would come in, we would do sort of an icebreaker and kind of ask a question about something that it was usually fun to talk about but was relevant, like, what was your first job or different things. Then we'd show this video, we'd kind of introduced the topic, show the video that had sort of the background information on that, and then introduce our local speaker for that time. And they would basically take the rest of the time, follow the learning objectives. We'd encourage them to pause, ask questions, leave time for discussion, and that was sort of... So there's a lot of information being taught for sure. Each one of these topics has a ton of information, but we always really tried to leave as much time as we possibly can for discussion and families to be able to ask their questions and things like that.
- Yeah. And I think we can, if we have time maybe we can talk about how you adapted to change with COVID because it sounds like most of this is in person, but I think that of course I think everybody would like to hear, what did you find? What was the outcome of this?
- Yeah, so we are, that's in process. I can tell you what we found so far and I can tell you kind of what we're looking at next. So kind of the first pass at this paper, which I've already alluded to, is just kind of can we do this in multiple sites? Is this actually a feasible thing to do? Are families getting similar information? How do families feel about the program? Do they like it? Do they hate it? What would make it better? And so that was sort of the first kind of outcome paper from this project or publication. And what we showed from there is that like, actually this is doable, it can be done and that it seems to be something that families find of value. So the next paper then was to look and see, well, are families learning the information that we're teaching them? We're giving them a lot of information. Are they actually learning that information and are they better prepared to advocate for their sons and daughters? So these are what we call in a trial, like the treatment targets, these are the very specific things that we're trying to like shift in our intervention, in our program. And so that's actually a paper that just came out in an issue today, which is exciting. But what we found was that families who took Assist--
- Did perfectly.
- I'm glad we did that. I know, right? Perfect timing. Perfect timing. Families that took Assist versus families who got some written materials, learned more about adult services, and they really felt more comfortable and skilled and better prepared to advocate for their sons and daughters. The other thing that I think is sort of the coolest about that study is that families who came into the program with the least amount of information about adult services and that were the least prepared to advocate were the ones that benefited the most from the intervention, that had the greatest gains. So it didn't seem to be a situation where families who are already really primed and ready to go, took the information and ran with it. It really seemed to be helpful for families that maybe were gonna have more trouble advocating. So that was I think, really heartening for us to see. And so what we're looking at now is does participating in the intervention actually lead to changes in service access? Does it actually lead to better post-school outcomes for their sons and daughters? And so I was able to present at an autism conference last year, we've been doing some analyses and the answer is, yeah, kind of. We also collected this data during the middle of COVID, and so it was really hard for anybody to get access to services regardless of whether you had an intervention. But we do have some data to suggest that, especially for families where their son or daughter was out of high school when they took the program that we're seeing some increases in services that they're getting six months after the program. But those data analysis are currently like as we, not as we speak, but in this period of time are ongoing. So we're really trying to understand what differences in service access looks like and who is able to best respond to getting the full intervention versus who maybe can respond similarly well to getting some written materials and is able to kind of run with that and go really thinking about trying to get the right level of intervention to people and not sort of over intervening if they don't need it. So we've got good data out there to suggest that sort of the things that we were trying to directly intervene in, we did. And I think we've got some pretty good reasonably compelling data to suggest that that's actually gonna change things, at least to some extent in terms of service access for sons and daughters. Not everything, but at least budging the needle a little bit in terms of service access.
- Well, I mean, that'd be really hopeful and I hope that does do that. And I think then thinking about that, if you can see both an uptake of the information from the participants and a meaningful impact on the families and the autistic individuals, like where would you go next with this? How do you move this forward? What do you think
- I could say... Yeah, you go first, Megan.
- All right. Okay. So while we were working on the project, I had a doctoral student named Janeth Aman Tovar, and she is very interested in adult services and transition planning for Latino families, specifically Latino families who are Spanish speaking. So she adapted half of Assist, so took it 12 hours, adapted it, made it all available in Spanish and conducted it with about 30 families. And they loved it. She did it all in Spanish. She was the facilitator for it. It went really well. We saw some nice significant increases in knowledge and empowerment and advocacy skills. And so we applied for a bigger grant from the National Institute of Mental Health to adapt all of Assist for Spanish speaking families and to adapt the measures that went along with them to make sure they were culturally responsive. And so right now we're in the midst of a bigger trial testing the full 24 hours curriculum with Latino Spanish speaking families. It's a project that we're doing in Illinois and we were aiming for 55, 50 families to go through it, and we had over 70 families who expressed interest in it. So we're very excited to kind of finish running it. We have people attending every week and hoping to see kind of the same results that we're seeing with Assist and then maybe scale it up in another version. So that's one direction.
- We also, Megan and I have a grant that is under review at the Institute for Educational Sciences that will take the Assist curriculum and program and develop it into bots and resources that teachers can use in transition planning. You know, teachers have a lot on their plate, teachers have their hands full teaching doing sort of school-based things and expecting them to also be experts in adult services is just too much. And so we're hoping to develop some resources that'll be really... Again, thinking about sort of sustainability that are really easy for teachers to use in the context of transition planning activities that they're already doing. And then we'll test that and see if that actually improves sort of, and you know, how families are and how youth participate in their transition planning activities and post-school outcomes. So that's under review right now. So we'll see how that goes. And then I think the last step, this is further down the pike, but I think the direction that I would love to see this go actually is a direction that Megan has done in some of her other work, which is training navigators to work with multiple families. I think the adult service system is really hard, and I don't know that ultimately the best answer is to try to train every single parent to be a mini service system expert. But if we can train navigators or whatever we wanna call it, people who can really walk alongside families that either know enough about the service to be able to guide families or at least know who to talk to, to get families that information and have that connection, that to me feels like a really nice use of this curriculum in the place that I would like to see it go ultimately. So we'll see. More to come on that. So I'm so excited about Megan's project for Spanish speaking families. We under recruited Latinx or Latino families in the study because we didn't offer it in Spanish and our randomized controlled trials. So being able to develop something that not only is in a language that families use, but is also culturally responsive. And Megan took a lot of care. Megan and her doc students to not just translate the materials, but to really get feedback to make sure that what we're presenting and how they're presenting it as culturally responsive, I think is a really, really exciting and maybe a good model for thinking about how we may do this in other groups as well. So lots of different directions and next steps.
- Yeah, and I think that coming back to what we started the conversation with about sustainability and thinking about beginning with the end in mind and sustaining it and thinking about as you described, like expanding into different languages and I'm just curious if you've got training the trainers like how you, you know, we talk about operationalizing instructions on how you bring it to your local context, but then how you train people when the research staff is gone and all the people but you're training them to continue this moving forward and yeah, it seems like that's a super important part of this concept.
- And I don't know, I had been thinking, so again, we get feedback from all of the families in our studies all the time to kind of help us. And so we got feedback from families to help us inform next directions and wrote these questions that I probably wrote because they were very leading. That was kind of like, do you want to sit through this really long training with all kinds of really hard information, or do you want someone else to sit in the training that knows really well all of these things that can work with you and can help you sort of go through the next steps? And we've had a lot of families that were like, no, I wanna sit through the long training. And so that I think has also been informing my thinking as well, because before we asked those questions and got that feedback, I had been thinking, okay, families don't wanna, this is long, it's a lot, it's hard. Like we just need to train people and don't worry about getting families this information directly, but train people that can walk alongside them and work with them. And the families are telling us like, at least the families in this project, which is a subgroup of families are telling us like, no, we also want the information ourselves. Like we wanna understand this and know this. Again, this is where as we think through next steps really making sure that we're moving things in a direction that's moving things towards what families want, not moving it away from what families want because of what I as a researcher think is maybe the best next step. And figuring out how to put that together, I think is a challenge that we have all the time, but how we make our work more impactful and sustainable.
- Well, it also re-frames how we think about a navigator. Because the navigator would not be intended to be with a family for the rest of their lives. That's not the purpose of the navigator.
- That's right.
- Navigator. Like now we realize that part of the job of the navigator is to educate and empower the family to be able to do it on their own, which then by definition the navigator works themselves out of a job, right? Yeah, it does push on thinking and really conceptualizing what the next step could be and who could benefit from a navigator versus who maybe just needs the training, versus who just needs the national video, which I think is a really good question to be asking, like, for which families may a certain intervention be made more or less appropriate and more effective for them.
- Yeah, I see the push pull of like helping enable but empower, you know, like--
- That's right.
- Growing the system, but the value of participation individually for the families and the individuals. We're getting near the end of the hour and I don't want to, I wanna respect everybody's time. I just will say that there's this question from, I don't know, this person named Elise McMillan about future research interests in the area either together individually. So I just maybe let you all share any thoughts on the future and please everybody please type in any questions and we will try to address 'em either now or we'll respond later.
- I think we've kind of talked about it, the school-based thinking about doing this in the school setting, translating it and seeing if it works for Spanish speaking families and thinking about the navigator program. Those are kind of our mutual research interests and thinking about hearing this out further, I see the other question in the chat and yes, the people in the control group also had the opportunity to receive the full program. So it was a wait list control group.
- And we should also say too, I think the people, not only did they have the opportunity to receive the whole program, but they actually got all of the same information as the treatment group, but they got it in written form. So in our intervention group, sort of the local experts gave prepared handouts and we had sort of handouts of different things. So everything that they were talking about then families had sort of documentation of that. They didn't have to be like furiously writing notes the whole time. So they had this big binder by the end that had basically all of the information that we had walked through over the course of the intervention, our control group got that exact same information on the same timeline. When we would send out the information for that week to our intervention group, we sent it out to the control group at the same time. So it was all the same information, but what they did not have was somebody to walk them through it and sort of the connections, but then everybody in our control group then, anybody who wanted to, after we had had the waiting period, also had the opportunity to take the full intervention with the speakers and so.
- Yeah, that's really neat. And again, we're basically out of time and maybe this will be a conversation that you will have to have because I'm curious about the notion of comparing in person versus some sort of video recorded sessions versus a written material. And you already alluded to this, there probably is a certain value of actually cohort engagement and learning amongst peers and interacting and I think that's an interesting dynamic that would be fascinating. Anyway, I just wanna close up. I wanna thank both of you for participating. I wanna thank everyone for joining in. I hope this was interesting. I know it was interesting for me. I learned a lot and I talked to these people frequently anyway, but I still learned a lot. Any final words, Julie, Megan?
- No, I don't think so. I think, you know, again, so this would not... We would not be able to do this project without sort of the buy-in and the support of our community, of the disability community and the Vanderbilt community. And I'm just, I remain really grateful for that. And all the people who are boots on the ground doing really good work all the time, every day for people with disabilities and their families, and it's been a real honor to get to work closely with them over the course of this project. So just grateful for their partnership and their generosity and the families too, who really put up with us asking them a lot of questions over a lot of years in this project. And we're really trying to listen very hard to use that information to help us figure out what the next steps are and really help us understand where this is working and maybe where it's not. So just a lot of people have been very generous with their time and with their feedback and it's really, really, really honored for that to be the case, I think.
- Yep.
- Alright. Well, again, thank you both and thank everyone for... I wanna thank everybody for attending and I hope everybody has a great night. Good night.
Last Updated: 11/2/2023 3:41:03 PM
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