We are the Association for Child and Adolescent Mental Health, or ACAMH for short. And this is ACAMH Learn. Welcome to Mind the Kids Podcast. Take a moment to think about this scenario. So your child's in a supportive school system and that support suddenly vanishes. And you are left trying to navigate a much more fragmented, underfunded maze of adult services with no real central guide. This service cliff is a reality for many families where familiar support ends, agencies don't communicate, and parents must scramble to secure income, jobs, health insurance, and community living options for their young adult's independent future. This episode is called navigating the service cliff: supporting autistic youth transition to adulthood. I'm Mark Tebbs, I'm your host for today. I spent my whole career working in mental health, from frontline service delivery to director of mental health commissioning. I'm currently chief executive of charity and a trustee for another mental health organisation and a career coach. And I'm delighted to be hosting these podcasts as we get to speak to clinicians and academics at the forefront of child and young people's mental health. Today, I'm joined by Professor Julie Taylor from the Vanderbilt University Medical Centre in Nashville, Tennessee. Our discussion explores that shift from a coordinated, school based system into the fragmented and often underfunded world of adult services. Many autistic young people and their families describe this experience as kind of falling off of a cliff. So let's get started. Julie, welcome. Delighted to be speaking to you. It's great to be speaking with you as well. Great stuff. So we're here to talk about your paper, which is around parent advocacy interventions for transition-aged autistic youth. Before we deep dive into the paper, it'd be great if you could just introduce yourself, maybe say your research interests and any kind of collaborators or colleagues who worked with you on the paper. So my name is Julie Lowndes Taylor. I am a professor of paediatrics at Vanderbilt University Medical Centre in Nashville, Tennessee in the US, although I'm trained as a developmental psychologist. So I take that developmental lens oftentimes into the work that we're doing in autism. Most of my research is around trying to understand how do we improve the transition to adulthood and adult outcomes for people with intellectual and developmental disabilities and their families. And a lot of that work is centred on people who are autistic during this time. And this project in particular has been a tremendous collaborative effort, I think like a lot of projects are now. And so the project-- the core collaborators in this particular project were Megan Burke, who at the time was at the University of Illinois in the US. Now she's actually at Vanderbilt, too, so I get to see her all the time, which is fun. And then Leanne Smith DaWalt who is at the University of Wisconsin-Madison at the Waisman Centre. They're both long-term collaborators of mine who just have such incredibly valuable input in the work that we do. I'll also mention that for this project, we partnered closely with community agencies in each of our areas as we're developing the programme and delivering it. And so the community input and the community partnership in this work is really, really important to making sure that we are developing a programme that people want, but also in increasing the chance that it will live on after the research ends. Great. So let's dive in. So the studies around this transition from children's services to adult services, why is that such a challenging time for young people? Well, at least in the US, when children with disabilities or children who are autistic transition from the school system, from school-based services and supports into the adult service system, for many people, everything changes in terms of services and supports. So when they're in school and getting school-based services and supports, the school can serve as the central point of contact that are really helping individuals and families figure out what might be helpful and where to get those services. And when somebody leaves school and moves into whatever's next, in many places in the US, including in Tennessee, there's no such central point of contact. The services that people were getting through schools often end, and individuals and families are typically tasked with trying to figure out how to get the young adult the services and supports that they're going to need to really meet their own goals and live their best, most independent lives. And I think another big difference in this transition is that the service system for adult disability services in the US is really diffuse. And so you may go to one agency to get income support, a different agency if you're looking for job supports, a different agency, potentially for health insurance, a different agency, potentially for supports for somebody to live in their community and be a part of their community. These agencies don't talk to each other often. There's really no central point of contact. So individuals and families are often left trying to figure out on their own. And this makes that transition really, really hard for individuals and families to even know what's out there, much less to be able to get what they need. The adult service system is also just really underfunded. So even when you know what's there, kind of getting those services at the level that are going to be helpful can also be really hard. So in the US, we often talk about this transition from school-based to adult services as the service cliff. So many families talk about falling off the cliff when they make that transition from school-based that now we just call it shorthand, the service cliff. So it's a time of really significant change and oftentimes a lot of stress for families of autistic people as they're trying to get the right services and supports together to support their son or daughter. Sometimes even the same things that they were getting before, but they have get them in different ways now that they've made this transition out of school. So the school-based system is kind of quite centralised, quite coordinated, I guess a kind of a caring system, I guess. And then parents and young people are experiencing this kind of cliff edge of very underfunded, poorly coordinated service offer. So what type of-- I'm just wondering what that looks like from a lived experience perspective. Yeah, that's a great-- I mean, there are so many different paths-- potential pathways that people can go to try to figure things out. So it might be that for example, when somebody leaves high school, they realise that it's going to probably take them a little while to get the right supports in place for paid work. And so they may potentially apply for income supports. So they have to have some sort of supplemental income as they're trying to figure that out. A lot of people and families apply for income supports because income supports is a gateway towards public health insurance. And so it may be that the individual and the family don't even need the check that they would be getting every month, but they really need that health insurance, which, as maybe you've heard about in the US, is not always so easy to get. And so people may be applying for income supports because if they can get that, then they can get the public health insurance to be able to get their medical needs met. But if you have income supports and you want to work, you can only work a certain number of hours and still receive those income supports, which gives you access to the health insurance. And job supports are from a completely different agency than the agency that would have income supports. And so families and individuals are trying to figure that out and balance all of that. And that's just a small subset of the different types of services and supports and agencies that people might have to wade their way through and figure out. We have job supports that could come from as more short-term job supports, longer term job supports that could come from different agencies. There's income supports that you might get based on a work history versus income supports that you might get not based on a work history. They have very similar names, they're SSI and SSDI, but you get qualify for them in completely different ways and it's just really confusing. And so trying to understand for each unique situation, what type support the most helpful right now, what might put somebody on a pathway in the future and then being able to understand how to move to get those types of supports is just really quite-- I don't think when I went into this project, I had a full understanding of how complex that actually is for individuals and families. Yeah, I think in the UK, the system is kind of quite different. But certainly, families have the same experience of that transition from a paternalistic children's services to then an adult culture where confidentiality and sharing information is very different. And the whole system looks very different. So that transition being really, really tricky. Yeah, that's right. On top of that, we have the issues around moving from really wanting to increase somebody's own self-determination and their ability to advocate for themselves, but in the context of a completely inaccessible system. And so that's the line we try to walk in our research too, is we really want to encourage self-advocacy, and we really want to encourage people to be the drivers of their own lives, while at the same time, recognising that where the system is at right now is just completely inaccessible. Not only in terms of the information, not only for people with disabilities themselves, oftentimes inaccessible for family members too. And so really trying to understand how to support the whole family system, I think, is the tact that we've taken in trying to budge the needle forward a little bit in terms of service access and outcomes. So in your study, you look at advocacy as a way of supporting families to navigate this kind of transition period. And you look at an assist parent advocacy programme. So could you tell us about, what is that what would that look like if families were receiving that assist programme. So there really are two, I would say, major of components or goals that we have in the programme. Sometimes we talk about it as three, but it really boils down to two. And one of them is if families are going to try to get to advocate and get services and supports on behalf of their son or daughter, they have to know what's out there. They have to know what it is. So a big part of the programme is an educational component. And it's pretty extensive. At least we think that it is. It's 12 weeks. Each week is two hours. And a big portion of it is really helping families understand. So one week might be about vocational rehabilitation, which is like job supports. One week might be about income supports. We always start with the session on person-centred thinking and planning, really talking to families about before we move forward, we really want you to be using this information in ways that are really getting your son or daughter towards their goals. And here's how you can start to have those conversations if you haven't been having them already, and priming them in that way. So each week, we talk about a different piece of the adult service system. I think what makes this a little different, or maybe quite a lot different from other sort of seminars and workshops and things that are out there is we really try to help families put it together. So instead of a workshop on income supports on Social Security or a workshop on vocational rehabilitation or Medicaid health insurance, for example, when we're talking about each of these different services and supports, we're really specifically talking about how they fit in with the things that we've already told them about. Really trying to help them put the pieces together and to understand pathways through services and different directions they may want to take and what pathway this puts them on if they pursue this versus this, which is, I think, the real hole that families oftentimes aren't getting and people aren't getting at least kind of in the US service system. And then in terms of the advocacy piece of it, I think knowledge is a really big piece of that. And we have some research to suggest that. But it's not the only-- just knowing about the services isn't quite enough to budge. So we have a session where we really talk very specifically and plainly about how-- what are effective ways to take what you have learned and actually use them to affect change. And effect change can be to get the services that you need for your son or daughter can also be to help somebody else, or to have legislative change and to try to change the service system more broadly. And it sort of is like this combination of knowing what to advocate for, but also knowing what to do with that information and feeling really empowered to be able to actually use it, seems to be-- all of that seems to be really important. And so in the intervention, we're really trying to not only teach families about the ranges of things that might be applicable to their son or daughter, and oftentimes it's actually more than families think that it is coming into it. There seems to there's a little bit more than what they think might be available, but also really equip them to effectively go out and pursue and get those services and supports. And in the UK, I think we hear a lot of families talking about feeling it's a bit of a battle against the system, kind of like arm themselves with knowledge and the kind of strength to really fight against the system to get what the needs are met. I guess it sounds similar in the US. Very similar. OK. So we've kind of got this programme, is it the programme standardised? Is it accredited? Is it used right across the US, or is it something bespoke to your area of work? That's a great question and we spent a lot of time working on. So in the US, the adult service system is different in every state. And there are some things that are common. There are some programmes that are federal, but there are a lot of programmes that are state-specific. And so when we first did the pilot work for this project, we did it in one state, we did it in Tennessee, and we developed this very specific set of curriculum about the service system in Tennessee. And we had really nice preliminary findings from that, which is how we were able to get funding for the larger project. But then as I would go and talk about it out in the world, somebody from Massachusetts or California would say like, this sounds great, can we use it? And the answer would be, no, you really can't because the devil's in the details here, and it's not going to be. So part of when we got our funding from the National Institute of Mental Health, we took the first year of that project to really explore and to understand how we could have a curriculum that was standardised enough to be a programme, but that also allowed enough flexibility so that every state could put in or area could include the information that was true and relevant for their information. So what we landed on with that is for each session, we have these what we call our national videos or these national that talk about-- it's an introduction to the topic, and they talk about the aspects of the topic that are relevant no matter where you live. And really oftentimes, it ends up just being a little bit of a primer, especially for families who haven't heard of these different services and supports before. It's so much jargon. And so we have this intro video for each session that is shown wherever it's delivered. And the information is relevant no matter where it's delivered. And then for the second part of the session, the real meat of the session, we developed learning objectives that are the same. The learning objectives are the same no matter where you are, but the specific content in the learning objectives may be a little different. In fact, will be quite different for some of the services depending on where you are. And then when we tested the intervention, we looked to see whether the learning objectives were met across different states in similar ways, even if the information was a little different was the actual the type of information met there. The other thing that I should mention really quickly about that is that this programme is delivered in total partnership with the disability community, so we don't have people on staff who are boots on the ground experts in every single area of the adult service system. So we partner with members from state agencies, members from local disability organisations, who are the people who are working with people with disabilities and their families every day in these areas. And they actually come in and we call them our expert speakers, who are the ones who are speaking about the learning objectives for each session. So not only are families and individuals getting the most up to date information, instead of us trying to keep up with all of that, but also that's a connection for people with individuals and families in the community where if they need to know more or are having an issue, here's somebody who's a real expert in their community in this that they can call and reach out to about that. OK. So there's a kind of a structured approach with kind of common learning outcomes, but actually it's very bespoke in terms of the local context and local information and local agencies delivering the programme. Exactly. OK. Amazing. So let's talk a little bit more about the study. So it was a randomised controlled trial, some experimental group received the assist programme. What happened with the control group? So in the control group, we ended up giving control families all of the information that the assist families got-- the treatment group families but in written form. So our treatment group families got these huge binders every week. We would have these binders that would have handouts from the different presentations that they were going to have that week. And then they could take notes on the presentations. They could have those as a reference to go back to later. And there were a couple of us, some other resources and things that were in those binders as well. And so our comparison group families got all of those same handouts and but they just didn't have somebody to explain that to them. And the reason why we chose that as a comparison group is because we thought, you know what, if there is a group of families who can just take a big binder of written information and run with it and don't have to have spend the time and the resources to actually go through this 12 week programme, in some ways, that would be great. And so testing that to see to what additional benefit does the explanation, the group discussion, having access to the local expert, what additional benefit does that confer above and beyond having access to the same information? And it's a lot of information, but just not having someone to walk through it with you, having to wade through it on your own, which we also thought was probably more comparable to what people were getting in their communities as well. Not that they're getting all the information pulled together, but they can look up information on these different programmes on their own. It's just having somebody to pull it together for them is something that people often don't have. OK. So one group kind of just got the information, the other group got it presented. And was there a peer support element to that the groups that were receiving it in person? I'm going to give a qualified yes here. That was very how we intended it to be. And we really tried to foster that. And in our pilot work, we saw the peer support piece coming through really clearly. When we started delivering-- and when we put in the proposal for this grant, we had reviewers who pushed back and said, could you just do this online? You could reach so many people if they didn't have to come in. You may know where this is going as I'm talking about this. People don't have to come in to the same place. It could be more accessible. Could you just do it online? And I at the time was like, no, we can't do it online. We've seen these beautiful things of families connecting with each other, families who in some ways get fairly isolated sometimes by the time their sons and daughters get into this age range. And we just-- I could tell you a lot of stories of just these connections that felt really meaningful when families were coming together and families who felt like they were the only ones who were kind of dealing with these and having a hard time figuring it out. So we held really firm that the groups needed to be in person, and we got a few sessions into our first series for our first cohort, and then the COVID-19 pandemic hit. And that was a real struggle for me because-- I mean, I should back up. That was a real struggle for a lot of people. The struggles that I'm going to talk about here are-- let's not put them in the realm of the ways that a lot of people struggle during the pandemic. But in terms of the research, I just felt so strongly that there was something really important about this in-person component. And so I tried. We tried to hold off for a while. We thought, well, this will probably all blow over in a month or two, and then we can get back to doing things the way that we were going to. And then it became pretty clear that it wasn't going to blow over anytime soon. It also became clear, as we learned more about the pandemic, that there was some evidence that people with disabilities were maybe at increased risk for COVID-related-- it didn't feel safe to even try to have the meetings in person, even though I felt like something was potentially lost by not doing that. And so we moved the intervention online and did all of the cohorts online after that. And I have to say, I feel like I was maybe one of the only ones who felt like something was lost. People really like-- people are used to doing online now. People felt really the convenience of that. We worked really hard to facilitate the peer support and to really leave space for families to talk with each other online and into encourage that. It felt to me like it wasn't exactly the same as the in-person peer support that we were seeing. But that's what we had to do. And we were still able to deliver it with Fidelity. There was high satisfaction in people who took the intervention online. So in some ways, I feel like maybe that ship is kind of sailed in terms of asking people to come into a place and be present, except for maybe in specific circumstances. And so it's probably for the best that we tested it online, because that's the direction where things are. Yeah, absolutely. And it's such-- That's long answer to your question, by the way. It's the reality, isn't it? It's the world and I agree with you. It does feel like something's lost when it's not in person, but the increased accessibility and convenience is a massive thing too. That's right. I have real mixed feelings about that. But I think it did become a little bit more about delivering the information. And I felt like it became slightly less about the peer support piece than the way that we had envisioned it, although we did put lots of things in place to try to encourage that as much as we could online. I think you can foster a little bit of it online, but maybe not quite the same. So what did you fin? Tell us what the findings were. So with these findings, you do them in phases. So our first phase was-- first of all, could we even do this? If we were delivering different information across different sites, could we deliver those with Fidelity and could we deliver it online? Did people-- were they satisfied with the programme? And all of that kind of went off without a hitch. We had really nice Fidelity. It was the same across all the sites. Our participants were really happy with the programme. Then we looked to see if families who had taken the programme, did we actually move the very specific treatment targets that we were intending to intervene in. So did they learn more about adult services? Were they more empowered? Did they feel more prepared to advocate for their son or daughter? And we saw some nice effects there that was similar to what we had seen in our pilot work. Families learned a lot more if they had taken the intervention than if we had given them written materials, and they really felt like they were more skilled and prepared to advocate on behalf of their son or daughter. So then the next step was to look at whether that actually translated into changes in service access. And that's where the findings got a little bit less robust. And so we looked at two different pieces of service access, which I can talk more about if we feel like it's relevant. But first we measured these government programmes that I've been talking about that fund services. So can you get funding for job supports? Can you get funding for supports for somebody to live in their community? But getting the funding for those programmes doesn't necessarily mean, for example, that you're going to be able to find the person to deliver the service for that programme. So we were teaching about government programmes really pretty specifically like getting the funding for some of these different-- getting funding for health insurance. But that still means you have to find a provider who will see the person who's autistic and who feels comfortable doing that. And at least in the US, that can be a real gap. We have shortages of providers who will see people with disabilities, especially in adulthood. We have shortages of direct service providers who can do job supports. So the second layer of services that we asked about was then these direct services. So we asked about whether there was sort of gains in these government programmes that fund services. But then also whether we saw gains in the direct services themselves. And we saw-- overall, we saw that the intervention as a group, we didn't see differential effects between our intervention and our control group overall in services. We did see that both groups had gains in government programmes, the treatment and the control group. But again, we weren't trying to test-- we didn't have an untreated control group. So we just hypothesised that for some people, the written information may have been helpful, but we can't really say that clearly. But when we were doing the intervention in the data collection, it became really, really clear that especially for these government programmes, the experiences of people trying to get these programmes once they were out of high school, which is when a lot of these programmes are relevant, versus the families who were still in high school was really qualitatively different. So we divided up the sample and did subgroup analyses pretty quickly and found that for families who their son or daughter was out of high school, we did see differential gains in government programmes, and they were able to use the information and turn it around to get more services and supports. But again, we talk about that pretty tentatively because we kind of saw that at one time point. We saw it for one subgroup. There's a suggestion that the programme might have been differentially helpful as opposed to written information for people who are out of high school. But it wasn't really our primary analysis. So I think it gives us potentially some direction for future research. OK. [INAUDIBLE] So there's quite a lot to ask. Yeah. So there was a very consistent effect in terms of families feeling as though they knew more and that they were more prepared to advocate. But actually that wasn't consistently turning into better access to adult services. Exactly. But there was this kind of small impact for a kind of a cohort that were just leaving high school. So what did you put that down to? Well, I think a couple of things. So we had these two different aspects of service access and the government programmes even when we had designed the project, we thought that was probably going to be more relevant for people who are out of high school, because some of these programmes are actually-- you can't even really apply for them until you're out of high school. And we had thought that perhaps the direct service piece of that would be-- so the services that are funded by these programmes, but also could be funded through other places, would be the piece of this project and the outcome that would be really relevant across whether someone's in high school or whether they're not. And that was where we didn't see any differences at all. But that also was the aspect of services that was the most impacted by the pandemic. And so if somebody had transportation supports, for example, but it wasn't safe for them to ride the bus, then they weren't going to be riding the bus. If somebody had job supports but the workplaces were closed down and they weren't going to a workplace, then they weren't using those job supports. And so the aspect of the services that we really care about the most, which is somebody actually getting the services that they need, we thought would be the most relevant across all the groups, and was also the aspect of services that was the most impacted by the pandemic. And so I think unfortunately, there's really no way of knowing what that may have looked like. I think the bigger picture, though, for this, is that getting access to funding for services doesn't mean you're going to get access to the service itself. And we find that these two pieces actually work pretty differently. And so that was a big take home that we took from this project, I think, is that there's so many steps in this process. So you have to learn about the service and be able to advocate. And then even if you can get the programme, that may or may not mean that you can actually get and use the service that that programme would fund. I think it really showed us even more of the complexity of getting from step A all the way to step D. For sure. And how long was the study? Because I guess that the timing must be really significant because I guess, the impact of the increased skills might be a long term impact. So we followed families for 12 months after they ended-- after the treatment group ended the intervention or the comparison group stopped getting new information. We will have the ability, we do have the ability to do some really exploratory analyses following people longer because then after our primary outcomes were done, which was 12 months after the intervention was over, then we actually allowed our control group, anybody who wanted to, to take the full [INAUDIBLE] and we continued to collect data. And so we collected data really, I think, in a more exploratory way to try to understand exactly what you're saying, which is it could take a lot of time to translate this information into actual services. So we have that data and we've started looking at it a little bit this longer term data. There's sort of cohort effects and period effects. And people who are in high school and are leaving high school as we follow people. But in some, we have data over about a 2 and 1/2 to three year period and have services measured at, I think, five time points over that time across the study. So it's a pretty rich-- it is a complicated but rich data set that we have that I think we can really try to tease apart some of these issues. Are you planning to publish that in the future? Is that part of your research programme going forward? We're hoping to. It's really-- I mean, again, they're just-- so we started with 185 families, which for an autism study is pretty large for a randomised controlled trial. We were really proud of that, and we retained a lot of them over the course of the entire study. But once we start divvying down into treatment versus control, and then thinking about people who left high school and didn't leave high school, and the people that we kept in the study through the entire three year period after, our numbers get a little small. So we've been playing around with different ways to handle this data that feels like it will tell us something really meaningful and potentially something suggestive, I think, for future work, but haven't quite landed on something yet that we feel like is the best way to capitalise on this data. So more to come. I think we've got so much service data over a pretty extended period of time that even though it's complex and even though there are a lot of considerations, I think we feel a responsibility to try to see if it can tell us anything important. OK. It's a work in progress. And the COVID impact is really interesting because in some ways, it's really enabled you to test an online delivery model. But in another, it really complicated that impact in terms of services in lots of different ways. Exactly. And we'll probably not have the opportunity to replicate the study. In a perfect world, we would just replicate it exactly without COVID and really try to understand to what extent was that impacting what we found. But that's not quite how things work. And that's fine. We're happy to move forward. The other thing that was interesting, though, is families, we saw tremendous attendance rates for the families that took the intervention during COVID. And I think that's because people weren't doing much else, at least during the really acute part of the-- I mean, again, people weren't doing much else out of the house, let's say. People were doing a tremendous amount. I was myself trying to work and care for my children and keep everything going. So not to minimise that. But people were available. People weren't running off to sports or meetings or things like that. And so I think it would also be interesting to see when the intervention was being delivered, not during such unusual times, what the uptake would look like in terms of the information. So there were some things, I think, with COVID that made it challenging in terms of really understanding our outcomes, but also maybe was an advantage in terms of people actually participating and taking all the sessions. Yeah, that makes sense. I'd like to touch a little bit on just maybe some of the implications or maybe a slightly more systemic look. So I'm wondering what the research showed in terms of some of those kind of structural barriers to accessing kind of services. So in terms of structural barriers there are-- I mean, funding was a big one. And so there are some programmes-- and then this was different across the different states, but for home and community based service, again, there just isn't enough money for everybody to get those supports that could benefit from them. So some states had wait lists and people could get on the wait list, but they couldn't actually get the service. Hopefully, they will at some point. Other states have priority, sort of priority I guess, priority groups of people where if you have these certain characteristics, you're kind of first in line for services, and if you have others, then you're later in line, hopefully at some point. So that was a real challenge, just funding and availability because of that. But the other real challenge, I think, was finding providers for services. Even if there was funding in the US, finding medical providers who can provide primary or specialty care for adults with disabilities, and particularly adults who might be on public health insurance as opposed to private health insurance can be really, really hard. And that's just finding any provider, much less a good provider, who really understands the characteristics of people that they're talking about, and then direct support professionals who are providing a lot of the in-home services and supports or job supports. Here in the US, they're not paid very well. There's a lot of turnover. Finding somebody who could be a consistent presence, who is really effective at what they're doing, was also really hard for families. So I think those were in terms of actually translating the information into real, meaningful improvements in service access, those were some of the big challenges that families talked about. I guess in the UK, I think families would probably-- it's a different system, but would probably be having some of those similar experiences, but probably through long waiting lists for access. Did your research touch on-- because not everyone is equally able to navigate those complexities of a system. Did your research touch on whether there were particular groups that were even worse served than other groups? Pretty badly questioned. Badly worded question. So that's actually analyses that we're working on right now. And it may not be terribly surprising-- what we're seeing-- again, with the grain of salt, because we're kind right in the middle of it, is that the families who are the most empowered coming into the intervention, the families who feel like they kind of know what they're doing coming into the intervention, seem to be the families who are the most likely to get some of the service needs met for their son or daughters. I think we are thinking really, really hard about the families who perhaps are not so empowered coming into the intervention, who are not so equipped to take this information on their own, even with some support and be able to actually turn that around into service access. What we don't want to do is exacerbate inequities that are already there. And at least in the US, families are doing such a tremendous amount. Parents are to support their sons and daughters often and to figure this out, that I'm not convinced that the most effective way, always to improve access to services, is to try to make every single parent or family member into a mini service system expert. I mean, what if you're an adult who doesn't have a parent or a family member to-- And so one of the directions that we are hoping to take this work and applying for funding to be able to do that is to take the structured programme that we have, and instead of using it to train parents themselves, using it to train peer navigators, who then can work with families. Who then would have the broad set of information, who would have the connections to the local experts, because we would use the same structure where we would have the local experts come in. And so then now these peer navigators know that if they're wanting job support, here's a person that they can talk to about that or health insurance or things like that. And then these navigators can work with a handful of families and walk along beside them, get them-- instead of dumping all the information on them, get the information that from the navigator's perspective, is going to be most valuable and helpful to them where they're at, and then be able to troubleshoot with them as they go. And I think that approach also actually lets us incorporate the autistic youth more into the process in a more direct way as well, which I think is really important. So from what we've learned from this project, I think teaching parents directly was a really good place to start, and that came from parents telling us that they didn't know what to do. They weren't getting the information and they felt stuck. So we were kind of trying to address that need that came directly to us. But the direction that I would really like to see this go is to use this pretty carefully vetted curriculum to train people who can work with lots of parents, well-equipped parents and not well-equipped parents or individuals who are autistic themselves to really funnel down the information for them and to support them in moving forward to get what they need. So we'll see. We have a funding proposal under review right now for that. And so maybe more to come. Sounds so interesting. So we're coming to the end of the podcast. I'm just wondering whether there's-- well, a couple of things. So, if people are interested in the work, is there resources or websites that people could check out? So our website is currently in the process of being updated, but it will be updated. So the website is transitions.vumc.org. Or if you go to Vanderbilt University Medical Centre and just type in transitions lab, you'll find us. But that's where we have an ongoing list of the things that we do. We're working to make it look a little nicer and to be a little bit more informative, but that at least is a good place to start. Great stuff. And is there a final take home message? Just is there something that you'd like to leave listeners with. I think families what we're learning from this line of work is that even when autistic people move into adulthood, families are really doing a tremendous amount to support their sons and daughters and the things that they do matter. We have a study that came out a few years ago that showed that the biggest predictor of the amount of services that somebody who is autistic is getting are the advocacy activities that their parents are participating in more than their own functional abilities and where they live, and all kinds of other things that we know that impact services. So these are things that parents are doing really matter a lot. Ideally, they wouldn't have to be doing these things so much, but they do and they are and they matter. So I think supporting families is so important. The other thing that I'll say is that doesn't come without a cost. So we have an analysis that we're working on right now that we're just about ready to submit. So more to come on this where we show that families who are doing more advocating over the next year have increases in stress and increases in anxiety relative to families who are doing less advocating. So we're asking a lot of families. Families are often doing it, and what they're doing matters for their sons and daughters. But I think we're finding that that comes with a cost to the families themselves. And so I think in addition to really during the transition to adulthood supporting, autistic people and people with disabilities, to be able to advocate for themselves and to be self-determined and to live their best lives. I think alongside that, we really need to be thinking about how to support families, too, as they're supporting their sons and daughters. Brilliant. Thank you so much for your time today and for all of your work. It's such an important area. Thank you, Mark. It was great to talk to you. Well, that's it. It's the end of another series. I hope you've really enjoyed it. I certainly have. And it's a big thank you to all of our guests and for you for listening. Just as a reminder, as always, please leave a review and comment. They mean so much and please share the word with your colleagues and friends. As always, there's the option to get an ACAMH Learn account which is free from www.acamhlearn.org and you'll be able to get a free CPD CME certificate to listening to any of the podcasts. Next week, it's the return of Dr. Jane Gilmour and Professor Umar Toseeb who will be discussing what it's actually like to be admitted to and spend time on a psychiatric ward. [MUSIC PLAYING]