( >> EMMA FOX: All right, folks. Welcome to the main Zoom room. Thank you so much for joining us. You are in the right place. If you came to the LFDN's Fabric not Fringe webinar series. This is the first of our four-part webinar series. This first one will be family members as mentors and supports in clinical settings. What you should be looking at right now on your screens is the first slide in our slide decks. It should have the text for the title of our webinar series. If I can get some head nods that you can see all right? All right. Awesome. Hello and welcome to the first webinar series. My name is Emma Fox. I'm a program specialist here at AUCD on our team. White woman is glasses, nose ring, hair up in a bun. I'm very happy to see you all here today. Before we begin, I'd like to address just a few details. We'll provide a what type a White Paper -- what this series it based on. Following on speaker's presentations, there will be time for questions. We'll have about five minutes for the question part. During the question, you can chat your questions, you can raise your hand. Or in the participants box. We'll have AUCD staff members here to support you so we can capture all of your questions and make sure we get them answered. So, what you should be seeing on your slides now is the agenda. We're going to start with an introduction by Fran Goldfarb and we'll go into family members as mentors with Stephanie Coleman, a quick Q&A section, then family members as supports in clinical settings with Mark Smith, then another Q&A session, then we'll conclude for the day. Because of the number of participants, your audio will be muted throughout the call. However, you can submit questions at any point during the presentation via the chat box or by raising your hand. Closed captioning is available for the webinar by selecting the closed captioning button on the bottom right-hand corner of your Zoom screen. The entire webinar will be recorded and available on the event page one week from now. There will be a short evaluation survey at the close of this webinar. We invite you to please provide feedback on the webinar and provide suggestions for future topics. So, we're going to begin by responding to a quick poll just to see what disciplines are represented here on the call. I'm going to try to launch that right now. Not seeing it pop up. Maureen or one of my co-hosts, can you see if you can launch the poll for me? If it doesn't work, that's okay. We can just go ahead and proceed. Are you seeing it work on your end, Maureen? >> MAUREEN JOHNSON: Yes. The poll is launched. >> EMMA FOX: Awesome. Thank you. We'll give it about five more seconds, then we can close it out. >> Emma, sorry. I think I closed it by accident. We may have to relaunch it. >> EMMA FOX: No worries! We're learning technology together. It's all part of the game. We don't have to relaunch it. It was just a fun little way to see who was here from the network to join us for this webinar. But it's wonderful to see that from who was responding already, I could see there was a lot of different disciplines represented on the call. So, thank you for joining us today. I want to jump into introducing our presenters, our experts from family support who have compiled the slides. First, Fran Goldfarb, family support discipline director for California LEND, as well as the director of community education at the USC UCED children's hospital Los Angeles. Stephanie, Coleman, child health and development at the University of Kansas medical center. Finally, we have Mark Smith, who is assistant professor in the UCED and the LEND programs at the Nebraska University center on disabilities at the Monroe Myer institute. Welcome to all three of our family support experts. We can go ahead and go get into the presentation. >> For me, it's good morning. For some of you, it's good afternoon. I'm Fran Goldfarb. In addition to the introduction that Emma provided, I'm also the Chair of the LEND Family Discipline Network, and I just want to provide a short introduction and overview for this webinar. Next slide. The webinar series is based on the Fabric not Fringe White Paper, which was developed by the LEND Family Discipline Network, and it can be accessed on the AUCD website or through this link right here on the slide. Fabric not Fringe really looks at all the ways that families have been involved in LENDs. Family involvement sits at the core of all LEND values and programs, and it's an essential component of family centered care. Which in turn, evolved into family as a discipline. As you will see in the series, there are many types of family involvement. All of which are part of the fabric of LENDs and not just the decorative fringe. Next slide please. So, in 2011, Ruth Roberts from the bowling center in Memphis, Tennessee, posed an attorney question. I wonder what impact family involvement has had on all the LEND trainees? Thus, the family involvement survey was born. We first launched it in 2012, and it continues to this day. If you are not currently participating in this survey (laughs), we urge you to! I would be happy to talk with you about how to get involved. But it is a voluntary survey, and we ask all graduating LEND fellows from any discipline to provide information on their perception of the importance and impact of family involvement. To that end, we identified eight types of involvement, which I'll go over in just a minute. The White Paper -- the survey led directly to the White Paper, the Fabric not Fringe White Paper. Next slide please. The White Paper includes for each of the eight types of involvement the definition, a description of best for programs that, it talks about the need for family, or that type of family involvement and discusses the benefit, it provides resources for implementation, and strategies for implementation, as well as addressing barriers and evaluating success. Although we usually refer to them as one pagers, they are in fact three to four pagers. Next slide please. The eight types of family involvement include family members as faculty or staff, family members as supports in clinical settings, families as mentors, as presenters and/or panelists, as members from the community serving on advisory boards as research participants, or consultants on thesis preparation. It includes family-focused topics, families as trainees, and family members participating in program implementation planning and evaluation. Now, from our poll, it looks like a lot of you are familiar with LENDs (laughs). I just want to provide a little bit of a background. LENDs are funded through the maternal child health bureau as part of the autism care's act. Advanced level interdisciplinary leadership training. Family participation is required for LENDs. We tend to think of family participations being family faculty, which we have had in LENDs as early as 1992. Family trainees, which started at about 1995, and as mentors in mentorship programs. But indeed, there are other possible roles as well. Next slide. We feel that family participation is absolutely vital to LEND programs, but it's important to think about family involvement moving beyond LENDs. The value of family involvement is important in all professional training. The act of participation of families isn't uniquely suited to LENDs. It has a fundamental role in all training. In fact, the purpose of the White Paper was to share the lessons learned from LENDs with other training programs, as a means to encourage and strengthen family involvement. It's important to remember that what you were talking about families, you should be talking with families. Next please. So, in today's session, Stephanie Coleman will discuss family members as mentors, highlighting the importance of understanding the family experience. Mark Smith will discuss how family support functions in the clinical setting. Next slide. This is just a little map to our webinar series and our schedule. I hope that you will be able to attend at least some, if not all of the sessions. But if you're not able to, as Emma said, we will be recording and archiving the presentation so that you can listen to them at a later time. So with no further ado, I'd like to turn this over to Stephanie Coleman. >> STEPHANIE COLEMAN: Good morning/afternoon, as Fran said, depending on where you are right now. I am in the Midwest, and I'm about 15 minutes left of my morning. I'm glad to be here with you all and sharing you with it. I'm going to be talking about family mentors, living from the lens of lived experience. I love that statement. I'll never forget who I learned that from, and it was mark Smith, my co-presenter today. Really like that one. I also -- I consider myself -- we talk about discipline supervisors throughout LEND, but I consider myself a mentor through the family train es. My title is family discipline mentor, and I'm at the University of Kansas medical center with the Kansas LEND program. Just an FYI, I was once a LEND trainee in 2016, 2017. I've had the full experience. Next slide. I was not an author on this White Paper, but I was asked to participate through mentors because I just love the mentorship program that we've developed here at Kansas LEND. Having so many great mentors in my life as well. In the White Paper, the definition of family men's is just this. Families of children with special healthcare needs are matched with trainees in the institution's training program. By sharing their experiences and perspectives with the trainees, families help them develop important leadership competencies such as family-centered care skills. Trainees learn the positive and negative experiences families have encountered within the healthcare systems. Next slide. Here in Kansas, our family mentors -- we used to do it right here in -- so, Kansas LEND is also on the state line. Kansas City is a city that's divided between two states. There's a Kansas City, Missouri, and Kansas, City, Kansas. I'm right on the state line in the metro area. In the past, our family immersion experience, the mentorship program, has always been in-person in right with the metro area. Thanks to COVID, which I'll talk more about in a little bit, we've been able to open that up. The families across Kansas with a child with a disability. Generational households, some grandparents are raising their children, and we also look for culturally diverse. Culturally diverse is not necessarily ethnicity and race, but for us, it's also including the rural and frontier locations that Kansas has. We are not just an urban area. Next slide. The need for family mentors. I included the first five family professional partnerships, cultural perspectives, self-reflections, working with community and systems in communication, are all MCH competencies. The additional needs are seeing an increase in medical care professional training. I think there's a lot that's been said in the network, the AUCD network, that medical students are not getting the training they need to be able to care for individuals with intellectual or developmental disabilities. All forms of disabilities in the future. We do need to increase that. This is one way to do that, by using family mentors. I think we should hopefully see it not just in LENDs, but across the spectrum of medical education. Family mentors are the experts. They're the experts of their lives, experts of keeping the family as the center focused with the individual in the middle. They know what they experience day-to-day. Trainees with this program, trainees get to get a glimpse of the daily life of families while keeping family-centered care skills centered. One of the things we've done in the past is survey our family mentor -- or our mentor families. We will see. You can see what is really important. They want to be able to teach the trainees, understanding what the families go through on a daily basis, the joys and challenges. And the challenges of everyday having a child with a special need. Hopefully they will also come to see how they can serve family needs better with this experience, and experience the daily life, as I mentioned already, and understand what families really go through. It's one thing to hear about it, whether you're in a clinical setting. It's another to really immerse yourself and talk with the families and see what their experiences go through. Our families really understand the need of that. Next slide. Strategies. This was -- I hate to say anything was positive about COVID-19 and the pandemic that we just went through for the last year, but one of the great things for Kansas is the ability to open up our family mentorship. As I said earlier, most of our family mentors were really right in the urban area of Kansas City, and we really tend to have a lot of resources and supports in there, but not so much across the state in some of those frontier and rural areas. We were able to open up the connection and include families across the state to do that, and reaching the new communities, families. Not only from that perspective -- it gives trainees an opportunity to see what resources and supports that we may have here that they don't have in some of those rural and frontier areas. One of the things people learned is even internet connection wasn't something they had in some of those frontier areas when they had some technology issues. But this did open up exciting opportunities to observe those families, and we learned new opportunities with the video conferences. They did monthly meetings. We revamped our family immersion experience. Before, we did it in-person in the Kansas City metro area. It would be three one-hour visits. To be honest, what can you get out of three one-hour visits? Not a whole lot. We looked and made it a yearly program. Each month, they had to meet with their families for one hour. Hopefully conversations and communications went naturally, but we did develop an interview opportunity for each of those months on what to talk about and discuss and ask, just to get the communication started. The activities they looked at were anytime during the day, mealtime, medicine routines. For my son, medicine routines are not always that easy. Some of our trainees also got to participate in doctor and therapy appointments, thanks to Zoom and IEP meetings. Again, there was some community activities and sports they were able to go out and safely be distanced between -- sorry. I'm seeing this chat in my way. Sorry (laughs). Being able to be out in community activities and sports but being safely distanced as well for those that are here in the closer area. Next slide. What were the barriers? The barriers for this program was really time and schedules. We all know as family members that our daily lives are busy, so trying to find time for our trainees to meet with their families was one of those. Technology. I already mentioned. Some of those frontier areas, internet is not always reliable. They were able to use Zoom and/or Teams. Communication too. Sometimes there was a lack of communication. We found it could be both on the student or the family's part in bringing that communication up. Excuse me. Next slide. Here are the benefits and successes from this, and this was from our trainees. I think this year with our new family immersion experience, it has been a total 180 in the programs we had. More in the previous years, it was like okay, yeah, we had this experience and whatnot, but this year, they just were so much more excited about the program. You can see some of the comments they said. "Having the opportunity to build a bond with their family and learn more about how disability impacts their life." They were able to provide resources that could be helpful to them that they may not have known about before. One of the things we do, we expected our trainees -- once they were connected with a family this year, that was their family through the whole year, whether it was class or it was a training or anything they were learning about. They always were supposed to put the family in their minds and thinking about how does this affect their family? Sometimes also talk to them about those resources as well. They got to see how the difference between the pandemic was different in a rural area versus the bigger cities. Then one of the trainees also thought it was great she could use her LEND experiences to tap into some of the resources that she was able to provide answers to, family questions as well. Next slide. Again, just some additional benefits and successes for the trainees. They were introduced to the experts of family-centered care. Again, as family members, we know our kiddos best and we know what our families need best and how best to support us. It also helped change perceptions and understanding of the experience of family experiences, disability with, and realize there's so much more than just the one person. That person having a disability, than simply loving or caring. Our days are filled with therapy appointments, and we have to be organized in keeping documentation and all of that. They're starting to see that experience in a much bigger and broader view. Next slide. I think this is the last slide. This was really important to me. It's like why do I have to prove or explain to someone that my son needs an accommodation or my react differently to a situation? If I say he needs it, why don't people just understand that? So, for this comment, it was really impactful to me where it said "asking for certain accommodations or reacts different to a situation. They don't owe anyone an explanation. Instead, we need to adapt, and that's talking about the care professionals that they are becoming." Trying the best way to support them. I thought that was a great benefit. Questions? >> EMMA FOX: Thank you, Stephanie. If you all want to submit questions, you may do so in the chat. You can raise your hand in the participants box. You can unmute yourself and ask questions. >> STEPHANIE COLEMAN: No questions? You make me think I explained that program so well, and I know in my head I didn't explain it so well, so come on! There's got to be at least one question. I see the question that came in. It is for all trainees. I remember when I first started in my position, we did the family immersion experience. One of the trainees said why do I have to participate? I live this every day. I said to them -- I'm like, but do you live it in somebody else's shoes? As a family trainee, I have a son who is 25 on the autism spectrum. As a trainee, I would look to somebody -- a family who had a younger child maybe with Down syndrome or maybe somebody with more medical needs than my son did, so I could really get a better fuller view and understand that. They really appreciated that. They wanted to see what the other side -- you know? I don't want to say the other side, but what other families are going through, and then they could kind of see well, I guess it's just like we say, you meet one person with a disability, you've met one person with a disability. Everybody is different. Sorry. They're coming in fast now. Challenges getting family mentors from diverse backgrounds. We do. I think that's with everything. We have trouble with diverse backgrounds here in the Kansas City area, which we really shouldn't because we are a diverse area. We've had in the past -- how do we overcome those barriers? You know, to be quite honest with you, I talk about it in all the areas that I meet other people in. I do a family education series. We talk about the family immersion experience. I send it out to the listserv and hopefully catch more people. I also do an explanation with I send the email and survey to request participants in this. I explain the need and why we need to have so many diverse families and voices being participating in this section. >> EMMA FOX: Stephanie, you have a question from Tamara. How long on average do your mentors stay with the program, and do you age them out at some point? >> STEPHANIE COLEMAN: We don't age them out. We have families who have older individuals. Now, mind you, I have only been doing this for let's see... this was my fourth year with LEND, and this is with my new experience. We've had several people repeat. I will say we've also done surveys with those families afterwards, and we have gotten a lot of positive feedback about the new family immersion experience. I don't know that I would age anybody out at this point. That's probably maybe because one of the big questions I get from families calling in is my son or daughter needs an adult doctor. We need to transition them from Pete at tricks to an adult doctor. Do you have anybody? Of course, the answer is it's very limited (laughs). I think having this opportunity to meet with older individuals or somebody also living with mom or dad still or independently, I think it would be great to have that so they can learn from those individuals what is needed for them as an adult as well. >> EMMA FOX: Let's take one more question, Stephanie, then those who still have questions can individually message Stephanie, or if we have time at the end, we can ask. I see a question here from Nancy. Do family members receive a training or guidelines on how to be mentors? >> STEPHANIE COLEMAN: No, we don't give them or give them a guideline. This year, they did see the guidelines given to the trainee. Basically, you know, um, one of the questions I've had is what do we want them to talk about with the trainees? I'm just like whatever you feel comfortable with! Whatever you feel comfortable sharing in your life is what we want you to do. There really isn't any training. We've had a couple of families who have -- this year, they put their child in front of a Zoom camera, and then they kind of walked off and did everything, and it was very hard for the trainee to really engage that child and get the experiences they need from this. We had to -- you know, I talked to that family and said this is what we're looking for. They did fully participate after that. But really, we don't do any kind of training or anything like that. It's just natural. >> EMMA FOX: Awesome. All right. Are we ready for our next content block with Mark Smith? You here, Mark? >> MARK SMITH: I think I'm ready. Hi everybody. Good afternoon or good morning or good evening, wherever you happen to be coming in from. My name is Mark Smith. I work at the Monroe Myer institute at the Nebraska medical center. I'm also a parent and have been involved with our UCED LEND for a few years. I was fortunate enough to have the opportunity to participate in the Fabric not Fringe development and got to author part of it. I did write the part that you read in there for better or worse. I'll just leave it at that. Next slide please. I'm going to talk about the idea of families as clinical supports in terms of what they can take out of their LEND training and go to. The issue the clinical supports coming from family members really kind of burr ows from two historical models -- one is the family support movement, of the 70s and before we had things like special education. Families did not have a lot of resources and supports. We saw the family to family movement emerge at that time. Families that served as not only emotional supports, but also informational resources. My son was born in 1989, and I have to tell you, at that point in time I thought I know what to do. In about three days, I was calling, and we had parent support peer support for our family because it was needed. I did want to comment that we've seen in the last five years -- and a little bit longer -- the role of persons with disabilities in peer support roles, and there's been a really cool change. We support that and we really want to see that take off because again, at least in my experience, and so many folks I've spoken to have said they get much of their best information from their peers. One of the things we found, at least in terms of Nebraska and the work we've done in this area, is that we did do training and tried to help folks be ready to engage like newly-identified families, with information with resources with how to do it. That's a little bit about family support. It also kind of crosses though with what we saw occurring with the onset of the medical home model. This should be very familiar to a very heavily LEND-focused group. You know, it's a model. It's not a place. You know, it's a model that involves medical services that are comprehensive, patient-centered, accessible, high in quality, and primarily, the care is coordinated. Next slide please. If I keep talking, I'll jump ahead, and I'm trying to do not to do that. I'm trying to be on my best behavior here. One of the things we hear from the data, in terms of medical home and working with children with special healthcare needs, that are on the spectrum, spectra, or that have disabilities, is the level of complexity increases. The need for a medical home type of support and service increases. What I hear often from my colleagues and experts in the field is that a child with any exceptional circumstances -- health, disability, or whatever -- should have a medical home in terms of the way they're treated. As we move forward, when we talk about transitioning the medical home model -- and of course, we're going back several years now. One of the questions that came in the play was how do we look at the medical home model in terms of how it mapped onto traditional medical model practices, as we saw pediatrics changing across the board, in terms of what personnel performed the different functions that we saw in medical home. How did activities and practices change? What was funded and what was the role of insurance in that? And what wasn't funded? Next slide please. Okay. So, again, as families are navigating healthcare service, as complexity increases, who serves as the most incredible resource? What families have told us is navigating systems is stressful, especially starting out. Also, in particular, during transitions. There is still compelling data about the transition between birth to 3 services and school services for children with exceptional needs. Families report that peers with lived experience are often perceived as credible, from the outset. We know that meeting the needs of your child with a disability or special healthcare needs can be difficult from a number of directions, but an example I put up was scheduling appointments. When my son was born and went into early intervention services, we were doing five appointments per week with different practitioners. So, yes. The issue of how we coordinate care fell on our shoulders, and it was difficult. Next slide please. What medical providers told us was that merely connecting a parent with a peer doesn't necessarily serve the purposes of what the doctor is trying to accomplish. We talked to doctors and would say, connecting a family to this resource. That's not a medical service. They didn't perceive parents necessarily as potential care-coordinators or professional in any way. That was community. That was outside of the door of their office, so it wasn't something they really addressed. They perceived issues, for example, collaboration with specialists, etc, as important, but they didn't always have the time or resources to address those. So, as we saw things transitioning from more medical model services -- and we're still in that transition, I should say. But that whole process of transitioning approach, it made sense, but in terms of how medical professionals viewed it, they didn't always see it from through the same lens that some of us did. Next slide please. So, when we talk about family members as clinical coordinators, there are titles all over the place. Public health workers, parent resource coordinators, peer mentors, care coordinators. The main point that I'm trying to make in the White Paper and I'm trying to make today is there are advantages to employing people with lived experience, with the lived experience of caring for a child in this role. There are significant advantages, and I'll talk about some of those. Next slide please. Okay. So, again, it goes through a list of the different things that -- roles a parent coordinator can serve. They can assist a family in navigating community services. They can help coordination with things like appointments with specialists. They can identify additional supports and the support broker role. They can just serve as an added resource for information for the family. You know? I've been through this and this work. They can be advocates, thinking strictly advocating for the individual. They're not getting what they need, we need to support this family and getting that for their child or their family member. They can help obtain benefits. I can't tell you the number of times I've had conversations with families where they weren't aware of a particular benefit or service that was available to them, and wound up, for example, in one case, they bought a Cochlear implant for their son out of their pockets, and that was -- those are expensive! They could have gotten that as a waiver service. Also, I commented about the issues families still tell us. Transition is a tough time. Transition supports and getting from one set of services to another, or one life experience to another, can be something that a peer support can be critical to. I do want to talk about what it doesn't include, because this is an important component, in terms of the work I've done in this particular area. A parent coordinator or resource, individual, whatever role we call it, should not in the role of providing medical or allied health advice or treatment. That is not an expectation. If the family comes in and says what do you think about the doctor's diagnosis? When we talk about our parent resource coordinators we say that's not a question you can answer because that's just a total setup for conflict. We also work to ensure that at least in terms of the programs I'm familiar with that we draw a red line between the service that a parent supporting another family in a clinic -- parent or caregiver or supporting a family in a clinic -- doesn't assume the role of other case managers. We learned that one the hard way. The example being child protective services. We had folks kind of assuming the role of child protective, and child protection health and safety thought we were doing it. We thought they were doing it. That was a hard lesson. So, we're not taking other people's jobs. We're trying to stay in our lane, in terms of this particular role. Next slide please. Okay. Thank you. So, in terms of what a parent coordinator or a peer coordinator being best utilized. Of course, we see that in, for example, with developmental pediatrics where that particular practice is working with a lot of children with complex and difficult -- or chronic healthcare needs. Another is if there's a lack of identified staff in that role. Remember, I talked about roles mapping onto roles. One of the things we found is we've seen medical home take roots in pediatric medical practices and adult medical practices. There really wasn't anybody in the clinic that was a fit for that necessarily. Staff who took it over would be like nurse managers, office managers, folks that didn't have access to the resources that they probably needed in order to support families to find what they needed going forward. Trained or willing to be trained -- finally, I'm going to talk more about this, but that have funding that compensate parent resource coordinators. We used to use this as a professional role, I think is the most important thing to say. So, it's not a matter of if we can find enough volunteers we'll make it work. That hasn't really been the case. Are there resources to support the program? Next slide please. I'm trying to watch the clock. Okay. So, a couple of pieces to bear in mind. Training and communication are critical. We have to ensure that if we're going to bring in family members, that they have the skills necessary to operate in the clinical space. We always look at it in terms of this idea of when we're working, especially with new physicians, that we're selling a service. We're saying that this is something that will help you in your work that will fill a void you may have in what you're doing and will add value and efficiency to your practice. We like to say that -- or we do say that (laughs), initial funds are really needed to get off the ground. If you're going to be training and placing trained individuals into pediatric practices or other allied health practices, at the outset, if we came in and said here, hire our person and pay them, we weren't getting a lot of bites. So, we have resources through grants and other funding to support our family coordinators. We said will you offer space to this individual? Then you can refer families to them. That went over -- we started getting bites (laughs). Also, you know, the idea of sustainability funding. One of the things that we tried to do, and I recommend, is the idea that over time, if things are going well, then we started saying, does it make sense that you start to support this individual in this role? Then that gave us -- and many did. We were able to expand what we were doing. Most critically, start taking data right away (laughs). We ran into problems with funders at least in our state, and not us, but more broadly speaking. This practice ran into problems because we couldn't demonstrate whether it was working or not! If we're going to look to sustaining our program or expanding it or both, data is critical. Next slide. So, it's really helpful too to have a lead that if you're looking at implementing this in your region state local, a UCED, a LEND. Early intervention has kind of seized on this and has funded this because it's a lot easier to get families to call to get services with the support of like a parent resource coordinator. TitleV, divisions, etc. All can be that initial lead in terms of overseeing things like identifying and training potential clinical parents. In Nebraska, for example, the program started with the research institute. It moved around. It finally landed at Monroe Meyer. So, we started trying to do these things from the start, and we've seen good results. I'm being told I'm running out of time, so next slide please. Okay. I did want to give some examples of places and people you can talk to to get -- I'm not doing a really deep dive. I do more so on the paper. I wanted to give you examples of programs that have really picked this model up and ran with it. One is my colleague, Sarah swanson at Monroe Meyer. The family Karenancement project, training parents and caregivers to work as clinical staff and clinical supports in clinics here and in pediatric clinics across the state. As Stephanie mentioned, we're similar in that we have urban -- we have an urban component of our state and a very rural component. So, to have folks on the ground out in some of those urban areas can be critical. The work that Brad Thompson has done in Texas is really outstanding. The Rhode Island parent information network has been doing this a number of years and helped us get off the ground. The institute for patient and family-centered care has a lot of information on this and is a great resource. The ITAC toolbox on the AUCD website as information on additional implementation strategies. Next slide please. >> EMMA FOX: All right. We are now open for questions. As always, you can type them in the chat box, unmute yourself, or raise your hand in the participants box. Yes, Susan, I will toss the links in the chat from Mark's resources. These slides are also available on our event webpage and will be available after the event with the recording, and you can access them right now if you would like to. I will put the URL to the event page in the chat right now. >> MARK SMITH: I see a question from Tamara about overlap and what family members can do versus social workers. We try and draw a red line between what our family folks do and what other services provide. The thing that -- I guess the big difference in terms of -- and I have nothing against social workers. They do wonderful work. But family members, we seem to be able to get a little bit more rapport with families quickly because of that shared experience. Social workers have other things that they do, so we try to stay in our lane and just provide support. There can be an overlap. We try not to overlap because we don't want to assume other people's role and then have things get muddled for the family. I don't see other questions. Okay. There is an effort to create standard data collection. I don't think across programs. Each program has their own, but the main thing is to be able to show efficacy to our funders, in terms of the grants and contracts we have, as well as to our primary collaborators, that being the medical practices. We really feel strongly that without that, it's very difficult to continue and sustain programs. Any other questions? >> STEPHANIE COLEMAN: This is Stephanie. I want to take a moment. Somebody had asked about learning, if other LENDs do a family mentorship program, such as this. I am currently actually working with Emma. We wanted to look at revamping our family immersion experiences. I sent out an email to survey the LFDN network, the LEND Family Discipline Network. I got such an amazing response back from so many LENDs that we started to put it together in a document. Of course, a lot of those have changed since COVID. I have been working with Emma and AUCD on putting one together, the document together, and I hope that we will have it out to the network by the start of at least next year's academic year. Emma may have a more better timeline idea on it that I do. >> EMMA FOX: Definitely. This is Emma. Definitely by the start of the next academic year. >> MARK SMITH: I can take one more question, Emma? >> EMMA FOX: Of course, Mark. >> MARK SMITH: Susan talked about billable services. We have been able to work with some of our government partners like early childhood services, but also the way we got around family resource coordination from birth to 3 is through our Title V program. Title V is really supporting us on children from 3 to 21. So, we've got some other contracts and grants that have supported us, but without those resources -- and again, we're trying to transition our dependency on outside resources to the practices. They're seeing savings as a result of using parent resource coordinators. That's one of the things we're trying to do as we're trying to demonstrate through our data. I would like care coordination to be viewed as a home community-based service. The discussions are ongoing, and we're looking at help me grow and other regional and national programs as ways to kind of move in that direction. >> EMMA FOX: All right. Thank you so much to everyone who attended this wonderful webinar. The first in our four-part series. We do so hope you join us for our next one. It will be next Wednesday, the 19th. Please, if you have time, take a few moments to fill out the evaluation, which is both hyper linked in the chat and also if you want to be -- if you're text savvy, you can scan the QR code on the slide in front of you. You just open the camera app on your smart phone and it will show up in your internet client of choice. Again, thank you so much for attending, and we hope to see you in more of our webinar series in the future! A few of us will stay on the line to answer more questions if you want to hang out and chat with family support. Thank you so much. >> MARK SMITH: I can hang around for a few minutes. Oh, I did want to say, if you're still on Rodney, we have a project dock program here. Some of the folks we use as resource coordinators also participate in our project dock. I actually use project dock in the class I taught this last spring, excellent impact, the whole issue of mentoring. Had to toss that in there. I hope you caught that. >> EMMA FOX: Try copying and pasting the link into your web browser. (Captioner signing out).