This is the House Health Care Committee. It's Thursday, April 22nd, and we're returning from a break at approximately 10.30 a.m. We've been hearing witnesses about the pressures on the pressures in our emergency departments where children and youth are waiting for mental health care services. And we've heard from Department of Mental Health and also from a pediatric emergency physician. We're now fortunate to have with us a physician from the emergency department at Brattleboro Memorial Hospital in order to give us some perspective from a different part of the hospital system in Vermont. And so, Allison, I'm going to welcome you to introduce yourself by name for the record and your role. And again, I'm reminding people that we have numbers of witnesses, so we'll try to keep to our timetable so we can hear from everyone. So welcome and good morning. Thank you for joining us. Thank you. So my name is Allison Cappadia. I am an emergency medicine doctor and I'm also the site director of the Brattleboro Memorial Hospital Emergency Department. So I just wanted to speak a little bit about pediatric mental health care in our emergency department. First thing is that all Vermont emergency departments are always happy to see any person, any time for any reason, okay? It's something that really brings us joy to be able to show up for everyone in our community, no matter the time of day or the reason. And it really is rewarding being specifically to mental health care in children. It's really rewarding to be able to provide a safe space during a crisis and ideally to connect families with local resources, mostly, honestly on an outpatient basis, but sometimes children do need access to inpatient mental health care. And that's very rewarding. I would say that based on my experience that children who need access to mental health care are mostly best served in the community. And I think that the Pediatric Urgent Care Office or I think it's just called Poppediatric Urgent Care Center in Bennington is a really good example of that. I'm guessing you are all familiar with that model. So I don't have personal experience with that model but I've seen the data from that model and it looks promising. So that would be a good local example of great access to community-based mental health care even during a crisis. When children do come to the emergency department and they need inpatient level of mental health care, it's really absolutely the best practice to get them to the inpatient level of care as quickly as possible. I think we can all agree on that. And I just wanted to give you a couple of examples why. So the first is that the ED is by definition a confined environment, okay? It's pretty small. We have a community emergency department. It's really quite small. And then, so anybody in the ED is at any patient is asked to stay in their room most of the time just because there's so much else going on in the emergency department. And that in and of itself can be difficult and can be harmful honestly to children who are there with long wait times waiting to get access to mental health care.  It was a really heartbreaking situation. And that child had to wait almost 24 hours to get access to inpatient mental health care. During that time, that child was in a small room in the emergency department and had to be mostly in that room. When it was safe, we could take them on walks but it often is not safe because there's a lot going on in the emergency department. So for a kid who has a history of being abused and being confined to be confined in the ED, that makes things worse. And it's horrible for that child, for their parent and really heartbreaking for the whole staff as well. Although that's obviously a secondary issue. The other thing is the ED is really chaotic. By definition, it's a chaotic environment. We do not control who or what shows up or when. We try to keep it as calm and quiet as possible overnight, but often the lights have to be on all night long because we are taking care of sick and injured people all night long. It can be loud, ambulances turn off their sirens when they get there, but there's doors opening and closing. There may be people speaking loudly while we're trying to resuscitate a critically ill or injured person. And that's just the nature of an emergency department and providing care for our community. And so what that means for a child who's waiting for access to mental health care is that they don't even get often like the basic, basic, their needs met which would be respecting their circadian rhythms. Like have it quiet and dark at nighttime, have it have the lights on and be engaged during the day. Like we want to do this, but we cannot physically always do it. We also can't always provide consistent positive reinforcement for any of the skills that they're working on. This is just like basic parenting, like circadian rhythms and positive reinforcement is what every child needs in general and especially a child who's in crisis and really struggling at the moment. So we try to provide those services, but we are not set up to do that consistently successfully. So that anyway, so getting kids who need inpatient mental health care to that level of care as quickly as possible is just very clearly the right thing to do. And then to come back to what I was told was more the purpose of this meeting is that you can't get one child to an inpatient mental health hospital until the other kids that are there are discharged to a very safe and robust community plan. So having robust community plan resources available is really, really key for opening up the inpatient beds for then the next child who has a crisis that rises to that level that they actually need mental health care. So those are sort of the general points I wanted to make. I also just want to say thank you for all of your time. Thank you for inviting me. And I really appreciate the, just the work that you all do on a daily basis being representatives is a huge amount of work. There's hardly any compensation at all. And so I just want to express my gratitude. Billy, I'm here. Thank you for joining us this morning. We really appreciate you making time in your very busy schedule. Let's open it up to questions from committee members at this point. Sorry, I can't by my hand. Go ahead. Okay. Well, represent Golden and represent Houghton. Yeah, thank you so much for coming. Could you give us a little bit of a sense of how many children you might have in the ER over a given period of time that are staying more than a day or whatever period of time seems the right amount to think about probably overnight. I don't know, how many children I guess I'm asking do you have stay longer than should? So I would say first of all, a lot of the kids who come in for mental health care really can be treated as an outpatient. And so it's connecting them to resources. And so those kids usually don't stay what I would say is too long. You know, like they are in yes, it may take a few hours to connect those resources, but most kids are able to be connected to those resources and be discharged. Probably half or a little less than half stay longer than that because they need access to inpatient mental health care. Not all of them end up getting access. There are cases where they end up waiting days on multiple days. And it becomes clear that waiting in the emergency department is causing more harm than being at home and waiting for an inpatient bed. And so they'll go home and then to an inpatient bed although that gets complicated in COVID because now most hospitals are requiring that you be quarantined essentially in the emergency department until you get the bed. That's a whole different ball of wax. And so how many are waiting multiple days? I would say most kids, and I don't have the data at my fingertips, but most kids who need to go to an inpatient mental health hospital are there at least 12, if not 24 hours, okay? And occasionally, they are there two, three, seven days. Yeah, and I'm sure the Department of Mental Health could give you the exact, you know, it's kind of random. I mean, it's random from my perspective. It may not be random from the Department of Mental Health perspective. Yeah. Thank you. Thank you. Representative Houghton. That was my question. Thank you. Okay. Other questions for Dr. Kapadia? Kapadia, thank you. Representative Goldman again. Well, maybe I get a second question since no one else, because I'm just curious, the resources you interact with sort of on a really frequent way is at HDR. So if you give us just a sense of the circle that is around these children. Okay, sure. So outside of BMH, so certainly HCRS, they are a designated agency, so they're always involved. Often DCF is involved, that's, you know, usually would come in, the DCF would have been involved in advance. Of course, we would call DCF if necessary, but that's not that common. And then some kids have access to other outpatient services. They're often affiliated with HCRS, but not the HCRS crisis team. And then in BMH, we have our care management team, as well as we have a psychiatric nurse practitioner that can help with placement. And we also have access to telepsychiatry. So that's a psychiatry consultation. We don't have psychiatrists in Brattleboro Memorial Hospital, but we pay for a service where we can get a psychiatrist on a screen to do an evaluation. So yeah, I hope that answers that question. Kat, I might be forgetting something that, nope, okay, pretty much covered it. That's about right. Thank you. Okay. Representative Chena has stand up. Yes, I see Representative Chena. I was actually just, I think Dr. Kapadia referenced, is it Dr. McGraw who's on the screen as well? And I was actually not sure I knew who she was. Maybe you would take a minute to introduce yourself if you were, I mean, again, knowing our time. And then we'll turn to Representative Chena. I'm Dr. Kat McGraw. I'm the Chief Medical Officer of Brattleboro Memorial Hospital. And so Representative Goldman reached out to me. We have recently presented to the Wyndham delegation a project looking at how to best achieve the health services along with medical services for folks with housing instability and psychiatric diagnoses here in Brattleboro. And so following that conversation, Representative Goldman reached out to me to ask whether we had some resources. And I asked Dr. Kapadia to speak. Great, thank you. Thank you both. And I understand you've done this all, as everyone has on very short notice, as we identified that we wanted to put some attention here in this past week. So Representative Chena, you had your hand earlier. Is it, you're still- Yeah. A question for our doctor guests from the South of the state. Just in full disclosure, I'm a crisis clinician in Chittenden County. So I work in the emergency room here a lot. But I'm curious, like I haven't been to your emergency room ever. And I'm curious, how do you manage the backlog when you have children kind of waiting, sometimes languishing, like for days? Like how do you manage it in your emergency room? And also, do you have any thoughts about things we could do at the state level that would help? Great, so great questions. So how do we manage children who are languishing to use your words in the emergency department? So I come from a background of harm reduction. So first I want to acknowledge that waiting in the emergency department is harmful for any person, for any reason, okay? And so one thing is literally, I acknowledge that to myself and I actually acknowledge it to the patient and their family that this is not helpful. And let's just be honest about that. And let's work together and figure out how we can make this A, as tolerable as possible, and B, as therapeutic as possible, but acknowledging that this is, you're not gonna come out of this better than you started, most likely. And so first of all, as patient-led as possible, most people have a lot of insight and say, hey, this is what works for me. I need the lights on, I need the lights off. I do well with reading magazines. It's helpful for me to be on my phone. Obviously we set clear boundaries. We do have to have some pretty strict boundaries. For example, you can't be walking around the hallways in the emergency department. Yes, if you want to take a walk, then let's figure out a way for you to safely take a walk, for sure. But there's gonna be limits and occasionally we're gonna have to say not now because there's a trauma coming in. Specifically for kids, anybody who's already hooked in with HCRS, like getting services, we ask that HCRS continue to provide those services in the emergency department because a lot of them are over Zoom. They can do that. Does it always happen? Probably not, but we try to make it happen. We will provide age-appropriate and person-appropriate tools, essentially coloring books. Worksheets, and stuff like that. Magazines, our emergency department is really small. We have 11 rooms, but 13 beds technically because we have two double rooms. And so we will try to put the anybody who's waiting a long time tucked into one of the corners. So it's a little bit more quiet and a little bit more private. Sometimes that works, sometimes it doesn't, sometimes we have a lot of medical patients. Anyway, so we try to be honest. We try to be kind about it and try to provide as much engagement as possible. I'd like to just add to that, that one of the things that folks should be aware of if you're not already is that as a small community hospital, like most of the hospitals around the state, we do not have a pediatric inpatient service. So we do not take care of pediatric patients, say for the occasional broken leg or something like that, that we don't typically have the resources available for a whole child life department or anything like that, the way that the UVM does.  But it's very different for a child with a mental health issue to be able to come into the emergency department and then need to stay for any length of time because those durable overtime services are not something that we have anywhere else in our facility. Thank you, Representative Donahue, I'm going to turn to you and then we're going to need to move on. Yeah, very quick.  So I would say with the younger kids, like under the age of 13, it's not that common because they seem to be more hooked into services or the teenagers, it is a little bit more common. And part of that could be that some, psychiatric illness has actually developed your first symptoms as a teenager. And so a guesstimate of how many are there is the first interaction, I would say less than half. Okay. So I would welcome any final thoughts from Dr. Kapadia or Dr. McGraw. And then we'll move on to hearing from Devin Green and Emma Harrigan. From the Vermont Association of Hospitals and Health Systems. So there's any final comments you wish to make? No, thank you. Okay. I just wanted to thank you for taking the opportunity to talk about this. We are very passionate about the care of our mental health, for our patients with mental health crises and all the more that we can do to provide better and more appropriate services for them. We are so fully in favor and happy to be a resource at any time about it. Great. Thank you so much. And I want to thank Representative Goldman for helping us reach out and make a connection with you both for testimony this morning. So thank you. Thank you, Representative Goldman. So with that, I'm going to turn. I see we have Devin Green on the screen and I'm looking, yes, and Emma Harrigan. So Devin, I'm going to turn to you and have you decide how best to introduce yourself and how best to proceed. Thank you for joining us, both of you. Okay. Devin Green from the Vermont Association of Hospitals and Health Systems. I'll have Emma introduce herself and then I'll do sort of a high level overview when Emma can fill in any of the gaps that I've missed. So Emma, if you want to go ahead and introduce yourself. Hi, yes, good morning. Emma Harrigan with the Vermont Association of Hospitals and Health Systems. So thank you, Chair Lippert for having us in today. We are right with you with the goal of having zero children waiting in the emergency department. We are right with you with the idea of this is a public health emergency for the state of Vermont. And so what we're going to do today is talk a little bit about the very recent data we've collected and then go into potentially things that we may need to address this crisis. So we have been speaking with our healthcare providers and we've heard about this crisis and so in an effort to track it, we've tried collecting data. It's really difficult to collect data from the emergency department. We've had discussions about this before and the system that we've set up is a point in time measurement of when a person remains in the emergency department after it has been determined that they need inpatient care but have not yet been transferred or admitted to a designated inpatient mental health unit. So these aren't people who are waiting to see a doctor. They have seen someone, it is known that they need inpatient care and they are now waiting to be transferred. What we found out and it's point in time as in 12 p.m. every Thursday. So we collect it weekly, we go to our ED directors, we say how many people are in your emergency department right now and give us these data points. What we learned from last Thursday is that we had six people waiting for admission to psychiatric inpatient care that were children. Four children have been waiting between one to six days and two children have been waiting seven or more days. In addition to that, we received notes from the ED directors about children who have been recently released. So one critical access hospital had an adolescent awaiting admission for nine days before leaving Wednesday afternoon last week. Another acute care hospital had eight patients waiting for admission, three who were adolescents earlier in the week and one adolescent left after 14 days in the emergency department. Another acute care hospital had two youth patients who waited for more than seven days that were discharged Thursday morning. So we wanna make sure that we capture the folks who just missed that cutoff of our data collection effort. So that's what we have with our very nascent data collection efforts so far. I think in terms of treating this as the emergency that it is, one thing that we could use help with is data collection and coordination. So I'll just say that the group that DMH mentioned where it was books from UVMMC and DMH and emergency preparedness and VAAS are all people who got together from the surge capacity group. So these are people, there was the surge capacity group. They began discussing, which was for COVID. They then began discussing the issue of having children waiting in the emergency department in psychiatric crisis and decided to form a subgroup, a sub-surge group to address the issue. So coming at it from an emergency management perspective. So we're utilizing those resources to try to look at our transfer protocols and alternative replacement and all of those sorts of things. But one thing that we could use is a workable, right now we have a bed board that talks about all of the different beds that are available in the state and where people are, but it's not quite sufficient or up to date. And we could really use a more comprehensive resource to see where people are and where possible placements are to try to get children where they need to be. So that's one thing that we could use. In general, we need many more resources across the whole system. I've said this before, I just wanna emphasize it again. As federal dollars are coming into Vermont, we need resources at every level of care. The PUC, the Psychiatric Urgent Care for Kids is a really great program in the South. We need one in the North. Right over retreat right now has half of their adolescent unit that they could discharge today if they had some step down facilities to send those children to or some step down services to send those children to. And so we need resources in that area as well. And just like other emergencies, we need regulatory flexibility. So can we utilize telepsych a bit more and can we provide some potential flexibility in that area for telepsych? Although you have, thank you, you have provided us with a lot of flexibility with telehealth. So I'm not gonna complain there. It's just something that I'm saying off the top of my head at this point. But can we have a statewide telepsych program? Do we need any regulatory flexibility there? Can we retrofit our emergency departments to better address this issue through emergency certificate of needs? I know NBRH, our Northeastern Vermont regional hospital has had a certificate of need for its emergency department for quite a while with the Green Mountain Care Board. Can we create a process where our emergency departments could quickly address this issue while still hearing advocate voices and getting advocate input about how best to design their emergency departments? I'm trying to think of anything else that we might need. That's what we have for now. I would also say we really appreciate the idea of DMH using ED wait times as a measurement to determine if programs are working. We'd like to attach ED wait times to every, just as a piece of measurement to every healthcare initiative because I think as I saw Representative Gina put in the chat, the ED wait times is a canary in the coal mine. It's sort of the tip of the iceberg. It lets you know that there's a problem in the system and if we can see measurable differences in those, then we know what programs are working. And we'll continue to work on this. We've reached out to other state associations and heard of opportunities in psychiatric urgent care and other ED alternatives. Statewide telepsychiatry support for hospitals and other resources for EDs like per DM payments because right now emergency departments just get one payment for someone who would stay for maybe two weeks because it's assumed that that person's only gonna be there for a couple of hours and not that they're going to be there for a few weeks. And we're also, we had a recent meeting with some advocates to discuss proposals where we both agree on alternatives to emergency departments and we'll keep working that arena as well to bring forward proposals to you. So overall, we're working on this. We know it's an emergency and we wanna work with you. Great. Before we open up to questions and we have about 10 more minutes, does your colleague Emma Harrigan wish to add anything? Thank you. I think Devin covered our points perfectly. I will just emphasize through data collection efforts, I think we have a good sense of what supply looks like in Vermont. The electronic bed board for DMH regularly collects information on crisis beds and inpatient beds and residential beds that are available. But I think we're really starting to cross into looking at what demand looks like and being able to unify those two aspects within something like an electronic bed board that can also track who is seeking placement and what the available resources are would be really valuable. And then just to put an extra note on accountability, we have a lot of data points but alignment and agreement on measures is really important to take something from a data point to a measure of performance and accountability. And I think being able to take that step is what will be needed to unify and fix system flow issues. So that when family seek services through emergency departments or community health that we are all working towards the same goal and we all understand the impacts of our decisions and how they can serve children better. Thank you. I'm gonna turn to questions given our time. I'm just gonna keep moving on. Representative Black and Representative Goldman. Thank you. Just two clarifying questions. You said that there was a certificate of need in front of the Green Mountain Care Board. And you said it's been there a while. Do you know how long? I, so I would have to check. I wanted to say something like I will want to check. I believe it was a year or more. So part of that might have been COVID. It might be two years but let me double check and get back to you. The other question was just around reimbursements. So if a child is in the ED for two weeks they're receiving one payment for an ED visit. They're not available per day. One encounter payment. One encounter payment. And are so in New Hampshire they do have a per diem that they have passed where the emergency departments would get a per day rate. Thanks. Representative Goldman. Thank you. Thank you so much for testifying. You mentioned the PUC program in Bennington and I see that Luna Maturn is here and maybe she's going to speak to it. I was just wondering, it sounds like a really intriguing idea. Interestingly enough, it's funded through a grant from OneCare and that's interesting. Wondering about what analysis has gone on about spread about the program and how spreadable it might be. Yeah. I would want to turn to OneCare to PUC itself or anyone else who's on this call to give you the full analysis. I have just heard that they have been successful in reducing emergency department visits, which I think is key. And from what I've heard, it sounds like it is replicable. It takes sort of funding but then is sustainable after that. Thank you. Thank you. We have had some testimony from them directly in the past in this committee, but it's perhaps just to hear from them again. She's here. She won't be. That was our prior session. So our new folks have not heard about the program. Right. That's right. So let me check in with, because I see that Luna Maturn who referenced from PUC program is on our screen. I do not have her on my list of witnesses. So I'm wanting to check in and see if that's we should turn to her at this point briefly. I'm just trying to make sure we get, I think it's absolutely critical that we not short chain sharing from the parents who are on this list. Yeah. Just I didn't get you the update. She is with Vermont Care Partners. So she's with their time slot there. She'll be. Great. So she is on the list in that indirect sense. Okay, great. I just didn't have that in front of me. Thank you. Well, then I think if there are no other questions right now for Devin Green or Emma Harrigan, Harrigan, I think we'll turn to Vermont Care Partners and they'll have the ability to fill us in on some of what their perspectives are and information for us. So thank you, Devin. Thank you, Emma. So I have, so I see this again across my screen here. Sorry. Dylan Burns is here from Vermont Care Partners and I'm going to have you take the lead if you will and then involve and introduce Lorna. Is it matter? My turn. My turn. Thank you. Apologies for mispronouncing. Everybody does. It's okay. Yeah. I've been doing it a lot today. So Dylan, welcome. And if you would introduce yourself and then in turn, and again, we have some limited time but we are eager to hear from you both. Great. Thank you so much. Lorna and I have a plan to kind of present together. So we have a slideshow, but I will start. My name's Dylan Burns. I'm Mental Health Services Director of Vermont Care Partners. I met with you with Julie Tessler a few months ago. We represent the network of designated agencies and specialized agencies in the state. And my background is in child mental health, child and family mental health as well, having worked at a designated agency and still having a very small private practice. And Lorna. And I'm Lorna Matern. I'm the Executive Director of United Counseling Service. And my background also is as children's director here in Vermont too. So this has a special place in my heart as well. Well, welcome to you both. Great. Thanks for having us. I'm gonna share our presentation. Can you see that? It's not full screen yet, but perhaps another click will bring it to full screen. I mean, we can see it, but it's just, we see all your side slides as well. There you go, got it. Okay. I really appreciate the question that you opened with Chair Lippert about what would it take to never have a child waiting in emergency department again? And I think that I'm hoping that our presentation will kind of share our perspectives on how to answer that question. The key points, I'm gonna be quick because I know everyone's really curious about Puck and Lorna will be talking about Puck, but our key points are we completely agree with the testimony we've already heard that the need for kids and families right now is overwhelming our systems capacity to meet it. But we just really wanna emphasize too that when our network agencies do have the capacity, community-based response can be very effective in meeting kids and families needs in the least restrictive setting. Our system capacity, as you've heard us say before, is strapped due to what we perceive as a long and slow erosion of funding. And we see some opportunities to address those needs. So I'm gonna quickly try to cover those points. Just as a baseline pre-COVID and in terms of what our network already does as a system, on the left-hand side, we provide emergency services. You heard some about those emergency responses earlier, but I think it's helpful to just illustrate that we just continue to see a steady increase in calls for emergency response, crisis response for mental health. So you can see five years, clear five-year trend there. And I don't think there's a lot of evidence that that's going to go down. And this was, and as we've seen that there's this current spike happening now with where we're at in the COVID pandemic. On the right-hand column, I just wanna make clear that in addition to all the school-based services that we provide, we also provide kind of comprehensive, community-based supports through our children, youth and family services programs and in any given year or well, in fiscal year 20, we reached almost 10,000 kids and families. The average family receives 28 services. There's a lot of care coordination and we're meeting kids and families in their homes, 50% of the time in the community, 20% of the time at school. And again, that's not our school-based services. So we're just doing a lot of community-based work. You've seen data on this already and you've heard examples. Yes, the current need is serious. It's a crisis. Our emergency services directors are telling us exactly the same kind of thing that you just heard from the hospital association. And this is true for adults as well as kids, which you just saw some data on. We're experiencing that need also at our outpatient level. So non-crisis, we have long wait lists at several of our agencies, over a hundred people on outpatient waiting lists and that's adults and kids, not just kids. And that paired with vacancies in our mental health positions and total vacancies of 780 across our network is part of why our systems really struggling to meet the need right now. But I do wanna paint a picture of how it works when it works because for families in crisis or even families just seeking services, community-based wraparound services can really do a great job of meeting kids and families needs without needing to go to emergency departments or inpatient settings. So what that would look like in an ideal setting in the scenario you talked about was a family calls and then there's no wait list for treatment by an experienced clinician that there's potentially a package we can put together really quickly with the support of a case manager that includes family therapy that may include DBT groups that may include respite or other community skills supports that are gonna work for the kids for kids. And if it's a kid in DCF custody or foster placement that those supports are available for foster parents as well. And we, Lorna, I don't know if you'd like to jump in here and just kind of chair from a UCS perspective or your own experience on that. Well, just really quickly, I started out in the system a long time ago when we were creating the system of care in Vermont and there was a really robust wraparound services. And although I know that we have services that are high quality and exceptional, we don't have enough of them. So when a kid needs a case manager and a clinician and group and overnight respite and all of these things, they can't get it because we just don't have the capacity or the funding to be able to provide it. So we give them what we can and it's often not the right level of care. It's not always the right level of care. It's excellent care. It just, we don't have the capacity to really wrap around kids and family the way that we need to. So from our perspective as a designated agency system to get to that state where we can offer those services to kids who are in crisis, we need to address this erosion community-based services and we appreciate what house health care has done and thought about and kind of put forward as priorities over the years. And I know that you're aware of some of these issues but I just want to emphasize that, 519 vacancies and mental health staff, we hear in my role, I hear day in and day out about how hard it is to find clinicians. Just last week, a program director said they hadn't received a single resume for mental health clinician position in the entire month. A medical director this week told me about how they'd had 100% turnover in two different regional outpatient offices just in the last year. And a children's director in different region talked about how with this vacant outpatient position she has, she knows she could take 25 to 30 kids off a wait list if she could just fill that position. And the pay gaps are real. I a couple of years ago ran into a former colleague from Washington County Mental Health who said, you know, I wish I could have stayed but I got this offer to be a community health team worker. I'm working 30 hours a week and making more than I could at the designated agency. And so that's the kind of, those are the salary challenges that we face in filling those positions. And so in addition to kind of a right sizing the balance in our clinician workforce, we having an annualized increases or COLA's would be really crucial for that. And in addition to the clinician kind of retention recruitment piece, there's also issues with respite and skills workers which are a really important part of the wrap around package. So I know in a couple of regions people used to be able to find respite workers who could really help kids who otherwise could step down out of inpatient placement or come back from out of state residential placements and they're just not able to find respite workers. And part of that's a workforce challenge and part of it is a rate challenge. And Lorna, I don't know if you have anything you wanna say from UCS on this. Well, I will say that for the rate challenge it's very true. Right now our competitors are for the $14 an hour rate that we're able to pay our Dunkin' Donuts, all these shopping and I could work as a personal shopper in Walmart for $18 an hour. So those are the places that people are going who are at entry level rather than to us. I see the representative Peterson has a hand. Should I continue? I think I'm gonna ask you to continue and then hold the questions so you've finished your presentation. Okay. So not every kid with an acute or crisis need is gonna work for them to have a community-based response only but there are some models out there that can work better than emergency departments in terms of meeting kids and families' needs when they're in crisis. And we've talked some today about NFI North and South, Jarrett House. We are fully in support of a team H's proposal for mobile response in the Rutland pilot and Lauren is gonna speak about Puck in a second. And so we just wanna name that in the continuum of care these are some investments that make sense to us. And so how do we get there? From our perspective there's an opportunity with federal dollars to invest into our system as a bridge to reduce that demand for more expensive hospital and residential care costs similar to investments made when downsizing the Vermont State Hospital. So an initial investment with federal funds paired with a commitment to long-term sustainability of the community-based system. So I'm gonna just leave it there and I'm gonna pass it to Lorna. And Lorna, I will move the slides when you tell me if that makes sense. Oh, sure. So the psychiatric urgent care for kids or Puck originally was a collaboration between United Counseling Service and Southwestern Vermont Medical Center. We had gotten together and we're looking at how much utilization of the ED had grown over the years and we needed to do something about it. And so when we got together, next slide, when we got together and we looked at the data we noticed that there were 294 kids in the fourth quarter of 2018 that went to the hospital that left the hospital, 80% of them left the hospital without a treatment plan. And generally what that means is they shouldn't have been there in the first place. And so we decided that we needed to look at an alternative, which is Puck. And so we actually applied for one care innovation grant and received that grant. That grant ended in June. So we no longer actually have additional funding for Puck currently. Next slide. So we had some goals and we had some things to do. Obviously the first thing creating is the urgent care that had appropriate level of care for children and families. And go ahead.  So it's not in that bright hospital setting as was referred to. It's in a very calming, very home-like setting. Next. We worked with our partners because we know that schools, when they're in a situation where they don't know what to do when a kid is out of control, they call the police, which is traumatic. The police bring them to the ED, which is traumatic. So we really had to get buy-in from our community partners and really work with them. And we did. We met with DCF, with police, the superintendents and schools. So now schools will call us first. And if they don't, because there's some schools that like to have the police come in instead, if the police are called, the police will actually bring them to Puck first rather than the ED as well because they know it's also better for kids. Next. Our next goal was to create a program that was appropriate for mental health care for kids and families and coordinated services. And so a day in Puck might consist of a call coming in from the school and our emergency services going out and bringing that kid to Puck. Working with the staff there in Puck, which is a licensed mental health clinician, respite workers and others to support that child. Imagine that seven-year-old that Dr. Kapadia talked about and instead of having that seven-year-old go to the hospital, he or she comes here where we could also do an immediate intake if the family needs it and they could be connected to a clinician and other providers. We provide family meetings within that same period of time. We provide consultation to the sending schools. So perhaps they can learn various skills in working with that child. We consult with the child's PCP if necessary. We have a psychiatry consult that comes in every day to meet with the family and the child if they're on medication or to consult around medication. They don't necessarily prescribe if it's not necessary, but we know that sometimes they need an adjustment with medication if they have it. We expect the parents to be involved in discharge planning and crisis planning and development. And the child can come back for a couple of days if needed more time to help self-regulate, get connected, learn some skills, and if we need more time to be working with the school. The other thing that when the child might be able to be self-regulated enough to be able to do some school work, we have connection now with their online school platforms. So they can access their school work while there if they are able. So they don't fall further behind, which is often the case. One of our ultimate goals of course is to reduce emergency department admissions. And our goal was to reduce it by 20%. And in fact, at this point, the last data that we collected, which was probably about a few months ago, three months ago, we had a reduction of 33%. Next slide. And so you could see that there are still kids that are going to the ED for various reasons. But when we can, when we are the, I guess the primary resource, we can reduce that by 33%, which is not insurmountable. Also wanted to reduce as a goal the length of stay. We're talking about that around sometimes kids are in the emergency department for the next two slides. In the emergency department for long periods of time. And this is our local data. And you can see that, although the percentage of kids who are staying for one day has not changed, the number has. We were also able to decrease the number of kids that stayed beyond three days by 50%. And as you can see also, there are no kids at the time that were staying past four days. We certainly know that that's changed a little bit with COVID. Kids are much more anxious and accessing the ED. And we're unfortunately also not able to increase the numbers of kids that are coming into Puck, even though there's a higher need. We haven't been able to respond to that in part because of social distancing and in part because of just purely funding. Next, we wanted to also reduce the cost of unnecessary placements in the emergency department. We've worked with 177 kids who've gone to Puck rather than the ED. And the average ED stay is eight to 34 hours according to the healthcare business today. Now that might shift and change certainly as does the cost of $2,264 per stay that will certainly change and fluctuate, which results in upwards of a $400,000 savings. That's a very, very rough estimate, but you could imagine it's at least a minimum, I believe. And finally, we wanted to make sure that we were improving patient experience and parent feedback, which is next, identify that they have, we have very high levels of engagement and satisfaction with families. They really feel like they've been heard and supported and now understand that they have an option other than themselves calling the police or going to the emergency room and themselves being there for hours on end. They feel respected. They feel that they have the services that they needed and they made a difference. And finally, just a very quick COVID caveat. As I just mentioned, we did have to close while we figured out mitigation strategies and PPE. When we reopened, we had 51 children in just a two month period of time. So certainly there was a need and an increased need. We feel very fortunate that the funding and DMH payment reform has allowed us to have some flexibility to be able to provide the service without increased funding. But without increased funding or additional funding, we're gonna have to stay small. And I think if we were able to have an infusion of dollars from either the federal dollars coming in, we'd be able to expand and continue to reduce the numbers of kids going to the emergency room. Representative Lippert, I think you've been muted. Yeah, I'm just gonna say, I'm gonna keep moving us forward. Let's hear from Representative Barrows, Representative Houghton and then Representative Peterson if there's, I may have it backwards, but y'all, y'all. I'm gonna jump in. I was first. Yes, thank you very much. And thank you for the testimony. Thank you for this presentation about Puck. It seems to be part of the answer anyway. I had a question. How many kids can get or patients I would say can Puck accommodate at once?  Well, we have actually, we have a one large room and then we have three rooms off of that. So we have a room with a cot if kids need to rest. We also have a room that's all sensory equipment so kids can do sensory balls and various other things. And then an office that if they need to meet one-on-one and then the larger space could be used for anything you can think of, whether it's yoga, meditation, sessions, family sessions. We have currently anywhere from one to three kids there on any given day, which is probably where we would stay, probably maximum of three in that space. Okay, and how do people know to come to you rather than the hospital emergency room? What's the dynamic there so they know to go to you? Yes, so first off, I would say not everybody knows to go to us. I think we're still in that process, but we have met with every principal in the county. We've met with guidance counselors. We've met with our local police department. We brought the police in for a tour so they know the space. The emergency services are the first to get the call. So then they can make the determination of whether or not they really need to go to the emergency department because they are beyond what we're able to handle and they need much more of a psychiatric placement. But we're getting the word out. We do a lot of outreach, making sure that people know that we're here. With COVID and being remote, I would imagine we'll have to go and do another outreach session in September to make sure that people remember that we're still here. A lot of outreach. Okay, and one final thing, and I won't hog any more of the time here, but Puck is pretty much a not an overnight facility, but something where you counsel and let the child go home with the parent. Is that what this is? That is true. We could have a child there from eight in the morning until four o'clock, five o'clock in the evening, and then they could go home and then they could come back in the morning. It certainly isn't, if a child really needs a psychiatric placement, it, however, I think that it's, I really wanna make the point that programs like Puck or hospital diversion are there to be able to divert hospitalization, right? So if we had that kid that comes in and can learn some skill and be safe, they can go home and then come back without going to psych hospital. I truly believe that there are some kids that are waiting now or might be going to a psych hospital that if we had the robust community-based services that are necessary and hospital diversion programming, we wouldn't need to create and build more beds. I have a thousand questions, but thank you very much. You're very, very interesting. Thanks. Thank you. We'll come back to that. So Reverend Burroughs, and we're gonna need to be very brief. Thank you. My question is from the drying of the ink on the signature line to you opening the doors. How much time did it take to set up Puck this first question and the second question, very simply is, do you think your model is portable to other areas of the state? I think it probably took us, gosh, we received the grant in May and we opened in September. We took the summer to really get to know or really communicate with our community partners, kind of reconfigure, find the best space. What we did is we converted our existing staff space, moved our staff and then created this space. And then I do believe that it's something that you can replicate across the state. Now, there's a whole spectrum of services that are necessary and various parts of the state, like the Rutland mobile crisis is very important. And I think this is part of the whole continuum of care. And I just... I hate to cut you off, but I really am, I absolutely want to respect the fact that we have parents who are here to testify and I'm going to turn to them. Deep apologies, Dylan, but there's many, there's much more that everyone here would like to learn about all of this. So we'll have to come back. I'm happy to answer any questions at some other time. I really appreciate your time. Yeah, we will come back again. Thank you. We have three parents who have agreed to be with us this morning. And I believe Robin, free number of wire is here. And we've asked each of them to spend maybe up to 10 minutes talking. I'm sure each of them has much more they'd like to say, but let's start by hearing from Robin and then Andy Anderson and then Kathleen. Ask them to introduce themselves, but let's use the next half hour and maybe slightly more to hear from parents who are willing to be with us this morning. Good morning, Robin, if you could introduce yourself and share whatever perspective you'd like to add. Sure, hi, my name's Robin Friedner-McGuire and I'm a parent volunteer with Mental Health First for Burlington, which is a family-led, all-volunteer grassroots, new working group of people who are working to try to get more investment in both crisis and prevention services for our families. And our primary campaign right now is Cogniz for Kids and Young Adults, which is a trauma-informed non-police response to crisis based on the experience my family had with police violence. First, I wanna thank you for talking about this today and for allowing for me to address the committee on this important issue. I think it's, I did write up some notes here and I'm happy to submit it. Following, I literally just finished it, so my apologies, I couldn't provide it to you in advance. I think most importantly, as I was trying to write, it struck me that it's really difficult to paint for people the picture that our family has experienced in raising children who have a mental health issue, particularly mental health issues that are not well understood. So I'm just gonna do my best and focus on what you've asked me to talk about here today, which is what our experience has been in the emergency room here at UVM MC. And I guess up front, what I'd like to say is that I hope that this committee continues to do the work that you're doing to focus on this issue and to try to take the time and the energy and the resources that it takes to really solve some of the problem for our young children and adults with mental health issues. For me, as a parent, the curtain has really been pulled back with the struggles that we have here in the state. And I also really wanna emphasize the need to continue to invest on balance in both crisis and prevention services. And I'm emphasizing the crisis because I think that it's, I understand, especially from a policy makers perspective, the focus on prevention services. But I think when we take a closer look at what those services look like, there's not as much research in terms of its impact for treatment. And I think for the comprehensive and continuum of care, it just warrants some balance. And as a parent who has a child who has a mental health issue, we have needed both services nearly chronically, to be honest with you. Multiple times a year, we have needed crisis services as well as preventive services. And I have been concerned by the focus on just prevention. And I understand it, but I just wanted to cite that. I guess a little bit about our family. I live with my wife, Naomi Friedner McGuire, here in Burlington, Vermont. We've been together for 16 years and we have three amazing kids. We have twins who are nine years old and my oldest is 12. And they're super active kids.  They're very academically engaged. They're all into sports. They're all into the arts and, you know, social media, things like TikTok, which is interesting.  They're jumping on the trampolines.  It's a loud house, very chaotic with a cat and a dog. And in a lot of ways, I would say that like our dream that my wife and I had to start a family has really come true. I think importantly for this conversation, I wanna share a little bit about my daughter's needs, but I also, you know, honestly just sitting here talking, feeling anxious about it because I don't want her to be the sum of what I'm talking about with you in terms of the more difficult things. She is just a bright, curious kid.  She's highly intelligent, extremely curious, very generous, super funny and hilarious and just has a beautiful soul. And she's just incredible all around. And I would say that like most nine year olds, what she has had to overcome in her life, it far outpaces even what most adults have to overcome. She experienced preverbal trauma and also, you know, candidly, she was in the foster care system very early, but even though she was placed with us early, the protracted process of being in visitation with her biological family was more trauma. So I would say for the first three years of her life, she was experiencing trauma. So to kind of sum it up from her perspective, the way that she perceives the world around her, it's very difficult for her to feel safe. And so although, you know, it's been changing through treatment and frankly maturity for her, the combination of the two and the health that our family has been getting, she is growing and she is changing, but that was not the case beforehand. And so what does that look like?  And so for her feeling unsafe in the world, whether it's in her home, she has felt unsafe in the community, she has felt unsafe in school, she has felt unsafe, she certainly doesn't trust adults. She's constantly operating in this fight, flight or freeze response. And what that looks like from a child who doesn't have executive functioning to be able to tamp that down as we can with as adults is that it's often violent behavior because she's fighting. It's often behavior of hiding in places that you just have no idea where she is and it's scary because she's freezing or it's literally bolting, literally running because she's literally running for her life. And again, some of these behaviors have changed but when she was much younger, it was constant and it was very difficult and it was scary and add to the mix that we had two other children that we also needed to try to keep safe. So these are the reasons why we had to go to the ER. My wife and I this morning, we couldn't remember if it had been three times or four times, to be honest with you. I think we've had so many experiences with going to the ER or dealing with various situations. It's hard to kind of keep things straight. But I think up front, what I want to say about the experience of going to the ER is that it has been consistently extremely difficult for us. And I'm encouraged by UVMMC's focus on trying to address these issues that they have within their ER. I've been able to participate in some conversations and I'm encouraged by the collaboration that they have with our designated agency. But without fail, it is very difficult emotionally and logistically and I think the four areas that I just want to highlight for you are one, transportation to the ER, two, the staff in the ER and their training, three, the space at the ER and then above all else, waiting for actual treatment for mental health care and not medical care. I think that one of the things that people don't recognize is right out of the gates.  You can't ride alone with them.  And most people would say, why can't you get a friend or a neighbor to come over and watch your other kids? And it just is not that neat. I have never experienced to be that easy to just call somebody over and watch my kids. Also, when it comes to exposure with neighbors, it's a breach in confidentiality basically.  The other option is you straight up put your kid in the back of a police car and it depends on the officer, whether or not you will ride in the back of the car with a child, that's just dependent on them. And one night we literally had our five-year-old drive off in a cruiser without us. The other option, which we didn't understand and it happened the same night was that ambulances will sometimes, I mean, in our case, they refuse to transport, which we thought that was what was most appropriate, but because of what's inside an ambulance, they couldn't keep her safe because of all the medical equipment, which I think is important for later in my testimony when we talk about the space. So right away, you're in a difficult situation where there's not appropriate transportation for mental health care to the ER as there is for medical care. In terms of staffing, I think that there's been a lot of incredible attempts to have the staff in the ER become more trauma-informed and to understand mental health more, but it is extremely, we are very far from that. And particularly when it's a child who's involved because oftentimes because adults observe the behavior in children as being a tantrum, spoiled, defiant, whatever name, put a label on it that's stigmatizing and harmful, that's often what we have experienced by the staff in the ER. And so it just means that they're impatient with her and for our daughter in particular, like she reads that very quickly and it just adds to that fear of not being safe and she's right, she's right to feel that way. On one occasion, when she was there, she was literally restrained by four staff members and a fifth staff member literally screamed at her, I will give you a shot if you don't calm down. I think importantly, that moment ties to the space that's available in an ER. There's nothing that's kid-friendly about it. The times that we were there, we were in spaces that had equipment everywhere, buttons, wires, materials on the spaces in there. We were across the hall from a woman who was screaming for hours. I do believe that she was there for mental health condition and she was screaming for hours. We have to keep our door open because our daughter's there for a mental health issue that's procedure and so she never got a break from the screaming woman across the hallway. There's nothing, no materials for children, even basic things for your typically developed child such as coloring books, but for a child who may have additional needs that are sensory or otherwise, there's nothing available.  It's all, you know, both a trigger in terms of the space and also what is lacking in the space, which was led often to some of her challenges when she was in the ER. Added to that, there's no other, once a child is calmed down, once our child was calmed down, I should say, there was no place for her to go. So we were waiting for days. On one visit, we waited there for nearly four full days. On another visit, we waited there for nearly three full days. She had no place to go. She couldn't go for a walk. There was no like enclosed, you know, small playground or just a space to get fresh air. You add all of that plus, you know, bad hospital food. It just is very difficult to deal with. But I think above all else, the waiting in that environment, like the physical environment coupled with staff that it was very spotty, how they were going to respond to your child, it was extremely difficult. And it was also just for us, I would say mind boggling because we were waiting for a placement at the Jarrett house one time. And the other time we knew we had to place her at Brattleboro Retreat because there was nothing available at the Jarrett house. And we were certain we were not going to be able to keep her safe. It was absolutely our last choice to send her to Brattleboro Retreat. But because of lack of resources here, we had to make that tough decision.  And the second time when she had to go to Brattleboro Retreat, she was not released directly to Brattleboro Retreat. She was released to our home, which was at that point pretty scary because we had to have eyes on nonstop. And she was readily escalated pretty consistently. And we didn't want to have to repeat what we had just experienced. I honestly don't understand quite honestly why this is such an issue. And it continues to be an issue. I know this has been a conversation for over a decade, frankly. And one of the issues that came up and has come up consistently in our conversations when we've had to consider her going to a facility is the option of going to Plattsburg. And I have, I really question that as a resource for families here in the state. She was denied access for basic logistical reasons. Like you need to arrive here within this hour of time or you may not get in. And I know from talking from to many, many families that it seems like there are odd logistical reasons why their children cannot get in. And it just makes me wonder what the bigger picture is. So I don't perceive that as a resource for families. So I guess in closing, if you were to ask me if I would want my daughter to go to the ER for mental health care, the answer would definitely be no. Even if I believe that the hospitals need to continue the work that they need to do, but at the end of the day, we need to build up our mental health system and build up our designated agencies and special resources. And if I had, if I could script out what I could see happening, which would be the appropriate transportation to an appropriate therapeutic location to provide her with the appropriate mental health care instead of the experience of like feeling like you're being stuck into what is a facility from medical care. And it's like a square peg in a round hole. It doesn't really work well. But I guess in closing, I just do want to emphasize that I know that UVMMC where we've had our experiences doing a lot of work. I also just know that the experience that we've had there, we've had areas of our experiences across, you know, across different systems. So it's not unique to just UVMMC. We've had some more experience in an educational system and of course with public safety. So I think collectively we have a lot of work to do. But I think that it would be a good start for us to try to figure out how families could have more community services or at least therapeutic residential programming that's more readily available for families. I'm gonna thank you so much for being willing to share this and in this public, oh, so public setting. What you've shared is extremely important. I realize that I won't also apologize for the other parents who are waiting, but that we, and I've communicated with them, we are going to take time into the lunch hour to hear from each parent. We will need to stop. But Robin, thank you so much for sharing this. It's important and we appreciate the courage that it takes to bring your family forward in order to help make change. So with that, I'd like to thank you. We're not going to be able to take questions right now, but I'm going to, with appreciation to you, move on to invite Andy Anderson, who I don't see on, oh yes, there you go, Andy, thank you. And with again, apologies, I hope that Andy you're continued to be available on Kathleen. We want to hear from both each of you and there is a time limit that eventually, but we are going to go into the lunch hour and I've asked our committee members as many as possible to make themselves available. This is important in retrospect. We probably should start by hearing from parents. And we learn along the way, so apologies. But Andy, introduce yourself and share with us what you need us to hear. Great, thank you very much everyone for taking the time today. So I'm here primarily as a parent, but with one of the wonderful introductions by one of the physicians, I did decide to- Andy, are you frozen? Am I frozen? I think I'm frozen. Yeah, maybe, yeah, hopefully it's working. So beyond being a parent, I interact with youth in other ways as a high school barred ball coach. And this year I've taken an opportunity to fill in at our schools as a substitute teacher. So I've seen a lot more things I would have anticipated, but as a compliment, special educators one-on-ones and interventionists as well as regular classroom teachers have requested my presence when they need to be out. So it gives me another perspective beyond the child that I'm going to talk about today. So moving right into our emergency department experience, our stay there was four days long. This was our first interaction with mental healthcare. Mental healthcare and the lack of action in the emergency department was actually a surprise to us. We have taken children there for a group and you walk in with a child who's not breathing, that's the case we moved to the front of the line. You don't stop at the desk and you are immediately seen. What we surprised us the most took us about 24 hours to realize that there was zero care that was going to take place in the emergency department and really started our questions about what the next steps would be. And finally after four days, we were able to find a bed in the southern part of the state. Unfortunately, it was not really appropriate for our child who was technically a teenager, but developmentally a little bit younger than that and so we were successful in getting them moved. What that result was, is that from the moment we stepped into the emergency department to before there were any services whatsoever provided a whole week had passed. So that was very disappointing and not really in line with what our expectations were at the time.  The rest of your life is put on hold, but probably worse than that because really nothing was happening. We did not really see what a plan was. Everyone was anxious as to what really that next step would be for us.  DR is really a bad place for kids. It's really isolated, it's confined, there's no activities for the kids. And probably one of the very negative, impactful outcomes for our child was that they will never trust a doctor again. It's almost impossible even though she's much older now to get her to go and see a physician or to go to the hospital even when the need may be dire. So it really kind of broke her trust in the medical system overall. But even if it's something else, like if she had a broken leg, she'd probably refuse to go because she just doesn't feel that when she went to the hospital that anything really happened that helped her. So that is one of those very negative outcomes. I wanted to make sure that was highlighted because sort of this weight in the ER, I was very excited to sort of hear about this Puck program where kids kind of can be shuffled over there perhaps and start getting something to help them in less than 24 hours, which I thought was great. The other thing that was happening in our minds causing more anxiety was, we know that going to the ER is costly. A couple thousand dollars a day or whatever. And as we suspected, that was not necessarily fully covered by insurance either. And at the same time, we kind of worried about that ER bed that we were taking up that maybe some patient who was having an asthma attack or heart attack or something like that, it wouldn't be available to them or making it harder for the staff there to care for someone else who had an immediate need that in a few minutes, they could pass away. So it just seemed like that was a really inappropriate use of the emergency department for these kids because not only was it not helping our kid, but it was taking vital resources away from the community. So really, I think that, the ER is not an appropriate entry point for some of these kids. The other thing that happens to them while they're there, they're constrained. And yes, there's a monitor that kind of watches, but I can tell you walking in the room is seeing the constraints still on the bed even though they weren't being used, it was very troublesome. And we did, I did learn about later about Jared House, we may not have been eligible there because technically she was too old, but appropriately she ended up in that age group anyway. So I think there needs to be some other alternatives for kids that have some sort of mental health crisis and certainly in our case, being sort of our first opportunity to experience it, it was absolutely terrible. And as parents, we would do everything we could to sort of keep them out of that situation as much as possible. So I'm hoping that we can find a way with some alternatives that will better serve our kids. Earlier, I think it was, Representative Black was asking about staffing and so on. And I mean, there is, I think Dr. Redgub had mentioned earlier, there is somebody who's monitoring the child the entire time with the door open, they probably don't have the appropriate training to provide some services and stuff to kids. But there is that going on. And I suspect that if we looked at the numbers at the UVM Medical Center, that there's always a child waiting there. And so having an alternative place for them could make more sense and be more beneficial to them long-term. So that's what I wanted to share with the committee today. Hopefully allow you to save a couple of minutes for the third parents testimony. Again, I wanna express my sincere appreciation for your willingness to come forward into this setting to talk with us about your experience. And I have to say, I deeply regret that that's the nature of your experience and we are working to see that we can make some changes. So thank you. I'm going to turn at this time to Kathleen who I believe is, I'm sorry, I'm searching my screen. I think her there on the bottom, but she's done. Oh, I see. There we go. Sorry, Kathleen. So Kathleen, welcome. And thank you for waiting through all of our testimony and let's take some time to hear from you. And so if you would introduce yourself, that would be great. Thank you so much. I appreciate being invited and I appreciate all of you and all of your compassion. And it's so overdue. As a parent feeling heard. So my name is Kathleen. I live in Essex and I have a daughter, Martha who's on the autism spectrum with some other comorbid diagnoses. So I think I've been listening all day. And so I think I'm a little bit disheartened by not hearing anything about agency of human services because I feel like they should be right here next to you in this talk because that's the system of care that we're in. So first of all, I emailed testimony to... Sorry, we're suddenly, I'm not hearing you. I see you're... I don't... It doesn't look like it's officially muted but I could not hear you. Are others hearing Kathleen? I think it's you. It's me? Yes. Okay. Okay. All right, I'll start again. Can you hear me? Well, I want to just check and see if it is just me. I will make it, you know, I'll catch up later but if it's other members then it's important. I couldn't, she went out for me too a little bit. Okay, so Kathleen, we'll try to...  So I'll just, I prepare testimony and I emailed it to I believe Colleen. I had spoken to Ann Donahue last night. So I would love for you to all read my testimony because I think it has some really good stuff in there. It makes sense of how I feel the system is broken and why emergency departments are overrun.  So we're under agency of human services and then, you know, Robin who I have huge respect for, the mom that spoke prior to me, I believe her daughter does not have autism. So she's more under the mental health umbrella. But in the end, we kind of, we're all under the same umbrella over agency of human services and we all are under the same system of care and the same policies. And so that's why there's such a disconnect in my mind where I'm hearing everyone talk and I'm thinking to myself, well, the systems behind you aren't functioning the way they should. And I think everybody knows that. I think when I spoke to Ann Donahue last night, I just started going on about my daughter's experience and I said, well, Olmsted is being violated in the state of Vermont. And my frustration as a parent is, you know, for years I have been advocating at meetings for my daughter. And the brick wall we always run into is lack of infrastructure and lack of ability to provide services. And so if we don't look at that, then this crisis is just gonna keep perpetuating. And so I don't wanna spend my time talking about that because I wanna focus on the emergency department. But that's one thing that is, you just can't put a band-aid on it. So I just wanna, I've been taking some notes as I've been listening to everybody talking. So I just wanna add a couple of things. And I think this is really important. So when my daughter was 16, I brought her to the ER and at that time, she was under the care of Dr. Jeannie Greenblatt, who was a child psychiatrist for many years. And then after that, I've been in Dr. Ratou's office. So at age 16 under Jeannie Greenblatt's care, you know, my daughter's on some psychotropic medication. She has pretty severe autism and she can get dysregulated very easy. And so when we were in the emergency room, I brought a team of people with me because I knew what we were up against. I brought her entire school team. I think there were four of us just to kind of make it through the intake process because I knew, you know, the hospital wasn't equipped. And so we did our intake. She was too acute for brad-a-borro milieu, I was told.  And so I had been doing some behind the scenes advocacy to try to get her into this hospital in Maine. And so I was, they don't take out of state patients. I just beg them to take her. They have a developmental disability unit. And so I knew it was appropriate. So they told me at least six weeks.  And we very well could have because there's a question that I was hoping this committee could answer. Under Department of Aging Independent Living and the system of care, there's funding available when there's a crisis. So what I was told, I believe it was from Claire McFadden that could have been from someone else at Dale. You cannot leave the hospital. If you're truly in crisis, you wouldn't be in crisis if you went back home. You have to stay in the hospital until you receive your placement. And I just thought, we'll never survive this. I can't do this with her. Like she'll never survive. And so I called Dr. Greenblatt and I said, can we go home? Like, can I get as many supports at home to get through this wait time? And she said, of course you can. You know, of course you can go home if you can handle it. And obviously we would go back if Martha became more cute. But we went home for six weeks and we waited for that placement. And so I can't help but think of all the data that you've given us about these children. And do you know how many of these children have developmental diagnosis and how many are neurotypical children? Because that in my mind gives you the answer that you need. Is this a lack of services that are perpetuating the crisis of bringing these developmentally disabled kids to the ER? Or are these neurotypical?  And my heart is broken because my daughter has a lifelong developmental issue living in a state that doesn't have the infrastructure to meet her need. And I would step back if I saw Robin coming in with her daughter who is having an acute episode and we're apples and oranges but we're under the same system. So it'd be interesting to know how many kids with developmental disabilities are waiting right now for that out of state bed because Vermont's not meeting their need here. And, you know, I can't help but keep hammering to everyone that I'm in the process of filing an homestead violation against the state of Vermont because I have it here forever. And we have to have federal money providing services not just crisis supports. Decision was made by the Supreme Court that we now create services in communities and not institutions. And Vermont's been out of compliance with that for a long time. By out of compliance, I mean, they haven't taken a look at their policies to make sure they're equal opportunity access because federal money has to be, you know, American Disability Act equal to opportunity access. And since they're not, we have a lot of the more challenging kids are very difficult to staff. We keep talking about staffing crisis and infrastructure. And when you have a child like my daughter who's very aggressive, she injures herself, she injures other people. She's difficult to staff. You read about her on paper, you're not going to take that position. If we become, if we follow an autism, I'm sorry, an integration mandate, then those policies will change and we'll be able to build that infrastructure. So kids like mine are inundating emergency rooms by this perpetual crisis that's happening by our state being out of compliance with homestead. So really agency of human services should be here answering these questions, you know, why can't these kids go home? Why are there no services? Because they're receiving federal money to create them. And so I think it's really important to find out how many of these kids have developmental disabilities and how many are told they have to stay in the hospital to get help. I was told that I've been told to give up my child to DCF custody to get help. And that's how you streamline supports. And so it's really, really important to bring agency of human services and Dale to this table and get those questions answered. Well, thank you for identifying that important question. Yeah. I mean, I could go on, if I have more time, there's a couple of things I could talk about as far as what an emergency room doctors really need to know. And I think, you know, my daughter scored a zero on the Vineland Adaptive Rating Scale. So that means she doesn't have the ability to do that. Yeah, can I just say that I think you are more knowledgeable in many of these areas than I welcome you to share the information with us, but I would not anticipate that we're in a position individually or even collectively too. Right. I'll give you satisfaction around your concerns right now, but it's important for us to hear. So let's take a few more minutes for you to share some more and then we'll. Sure.  I believe she's been at some of my Act 264 meetings. There's systems in place such as Act 264 and the agency and the school are supposed to work together and they just, they just don't. The agency is not held accountable to providing the level of services that a child in crisis needs. You know, we don't have any laws to hold them accountable, whereas the school district has to provide FAPE. So oftentimes a child goes to the emergency room, they're in crisis, they're combative at school, there's a lot of safety issues going on and the school district has to provide a free and public appropriate education. That child will probably leave home and be placed in another school somewhere. That leaves the agency off the hook of ever providing the infrastructure and the ability to staff this child because the school just paid that bill and picked up those pieces. Whereas Act 264 is supposed to be, you know, Claire McFadden, our autism expert, wrote the white pages to the Act 264 board, which is a great document for you all to read. Just Google Act 264 white pages and it's all best evidence, it's all best practice and we need that best evidence, best practice and policy. So when you go to Act 264, if you can't solve your problem locally with your school and your agency and your family, you then go to the local interagency committee and then the state interagency committee and all of those things are supposed to function and then you go to your head of your school district or your head of your agency at the commissioner at Monica Hut and you request what you need to meet this child's need and the only one ever held accountable is the school district to provide FAPE. The agencies are never held accountable because there's no law to hold them accountable. And so so many kids have been displaced and gone to residential treatment centers and gone to residential schools after leaving the ER, sitting there waiting, where are we gonna go? The emergency room doesn't know what to do with them and only the school district is legally having to step up to the plate. And so year after year after year of that misuse, where there's no infrastructure here and there never will be. I think you're identifying issues that go be honest, well beyond what we're focused on here today, but they're important issues. And so I really appreciate your identifying those and one of the things I mean, in addition to the inadequacy of the emergency department setting itself for you and your daughter, that the agency human services more broadly needs to be engaged in these conversations. Absolutely. To not assume that this is only an issue for children or families with children, how about mental health issues, but that there are also additional issues which frankly fall outside of the department of mental health responsibilities and purview and perhaps another part of agency human services and the schools as people have raised earlier. So I appreciate you bringing all of this to our attention and for again, as I said to the other parents, for my view, it's at times courageous for a family to come forward in a very public setting to share your own personal family challenges in order to help make change, not only for your family, but for others as well. And so I really wanna thank you for making time and taking time today and I think what I can say to you and to Andy Anderson and to Rob and earlier, I have a particular appreciation for each of you as parents for coming forward here today and. Thank you as well. We learn sometimes not as fast as we should that we need to hear from parents early on and hear from those who are providing the services so they can hear the parents first. But with that, I'm given given the hour and given the time we have, I'm going to suggest that we will come back to hear further from members of the department of mental health, perhaps from agency human services has been suggested to touch base of colleagues who have areas of responsibility in these areas as well. But I see the represent goal and you have your hand up. So I'm going to check in with you, but I'm also wanting to signal that we're coming to a close. So if your question is something that should be asked at this point, as opposed to later, please do. I would just like, thank you, Chair Lipter. I totally appreciate that. I would like just to put something back on the table that has come up in previous conversations maybe months ago between the disparity of payment for staff at designated agencies compared to schools in the state. We had talked about that and I know there's a ton of other stuff going on, but I'd just like to bring that forward again so we don't lose sight of it. Thank you. Well, I can assure you there's no possible way for us to lose sight of it as long as I'm the chair of this committee. And I think I say that with appreciation represent goal. That's not to question your saying that, but I'm going to just say that the issues that have been brought forward today about the system of care that has been chronically underfunded is part of the systemic issue that we're dealing with here. And so I do appreciate your saying that. Thank you. And I would just say that this committee has been a strong advocate in that regard. And that doesn't mean that we need, there's not more to do, but I think there is some, I just want to acknowledge the members of this committee who have been steadfast in trying to push for adequate staffing, funding, and resources for our community system and as we've done throughout this session as well. And we will continue to do that. With that, I think apologies to anyone who really would like to take more questions, but I think I'm going to bring this to a close for what's now the early afternoon, but for our morning of testimony. This has been important testimony and I look forward to us continuing to engage in this issue.


So now we're going to move to what I consider to be the sort of the heart and soul of what INCF is and that's the volunteers who form these special interest groups at working groups that actually developed these Consensus base we always hope standards and best practices. So our first I should state jump back and say that we had some special interest group meetings that took place Wednesday at the same time as the hackathon and also the infrastructure workshop So we The next few speakers will tell us a little bit about their special interest group and also what they accomplished during their meeting This week. So our first speaker. Yeah, you know, Francois. Yeah There's a Francois Mohammed see and he's going to speak about his special interest group group Neuroshapes Thank you. So my name is Mohammed Francois see I worked for BBP adfl in Geneva, Switzerland so I'm going to Talked about a newly created ICF special interest group called Neuroshapes and work you through a little bit the goals of Neuroshapes and Yeah, what we had started to do during the last During Wednesday our first meeting. So what is a new shape? Norse efficient initiative to promote the usage of semantic markups as a way to describe datasets so we want to Promote we're gonna encourage people to publish dataset over the web. So they use semantic markups For example extending and reusing schema.org wants instead of creating a custom wants So a lot of initiative currently are doing that. I'm thinking of a bio schema for example So as much as possible review schema.org markups and when there is no Schema.org one create one for no science data type for example So this is one one thing second thing is promote the usage of the W3C Provo vocabulary as a way of capturing provenance So one important thing we try to do in Neuroshapes, but we hope to be able to do is Capturing provenance is not just a description task or a notation task It's Quite accepted that a lot of people are already doing that We hope to be able to reuse that description of the provenance as a way to provide ontological definition for data types We want to promote the usage of profiles and schemas as a way to enforce metadata Quality rather than having it on procedural codes in the project where I work BPP a lot of developers a Lot of people there put a lot of Check or a lot of constraint on on procedural code rather than putting it on artifacts that are easily shareable and discoverable and we want to really promote the usage of schema and in Neuroshape We picked W2C charcoal. That's why it shapes because in W2C charcoal We have schema called shapes So we pick it because it goes beyond Gison schema and it has very good properties in form of I mean It's it's very very expressive and some people they can express a lot of a lot of a lot of constraint Something we want to do as well or we start to do at BBP Is really to try to find Schema's for a lot of neuroscience specific entities like morphology reconstructed if his recordings Single cell models or circuit which are the neuroscience entity we worked with there But really try to find something that is called here mines, which is what are Can we come up with a profile or schema that will enable neuroscientists to publish or to describe their data using sort of normalized Normalized schema. So this is an ongoing effort that we we started it in in Neuroshape as well so What do we have currently? In Neuroshape, I mean if you visit the the GitHub repository You will find Schema's and profiles for various neuroscience data types that we care about mainly reconstructed cells which are Generated from the LNMC lab, which is a lab at APFL that Perform reconstructed that reconstruct cells from slice You would have wholesale patch clamp recordings as well schema to describe those data types as well as some profiles for describing brain atlas releases so here I'm just showing an example of What type of description we came up with in Neuroshape for example This is a probe description of reconstruct of if is recordings here as it is done at the LNMC lab So basically we have a bunch of we have the workflow here described using w2c probe So it's activities that use these entities and generated other ones And we were able to map the agents that were involved as well as the different protocols that were that were used Here we have the same type of pattern for morphological construction for example, and here we have the The way we represent or the way we describe at brain atlas releases within within BVP for example So currently these schemas we have you don't have many of them for now So these schemas are mainly used at BVP because we created them, but as well at HBP Mainly the HBP brain simulation platform. So we had a hackathon with them So that we were and we were able to produce some profiles for single cell model and for circuit for example and Connect the crumble center for neuroinformatics just started to look at Neuroshape and how they can they can adopt the approach And as well we had this collaboration because these three organization They kind of share the same that integration platform component, which is blue brain nexus as shown here so it was Very useful to at the same time we share the same data management component to share as well Some data models for some neuroscience data set So we had a meeting the first one Wednesday we had eight participants eight motivated participants Who really challenged the approach I would say Because I had the I would say I said that Gison LD is very developer friendly, but apparently a lot of people don't think like that But that's fine. I still think it's developer friendly So During that meeting we I presented the neuro shape goals And we looked at some possibilities of having shackle schema for an IDM data models Which already have RDF representation as ontologies, etc. So it was really straightforward I think Taylor here had written some some cool schemas for an IDM for her use case that connects and we looked at that so We identified that we need a pattern Shackle a validator to get more people involved as I think in the neuroscience community a lot of people are working with with Python currently the W3C shackle Validator we have only written in Java and Scala So this is something that we will gonna we will work on and Got useful discussions and feedback about the usage of semantic web in general within Science in neuroscience specifically. So it was really interesting So how to contribute? We have the Gita page. So I'm safe slash no shapes. We had a Gita for chat So we have the sick page in ICF and we love hackathons So that's how we got all the how we work usually within BBP with HBP and with other Other collaboration that we that we have so we call it bring your own data sessions So really contact us and we'll be happy to organize one right so That's it. Any burning comments questions feedback training piece to your sig Do you have a training piece? Like tutorials, you know, or is there any plan to develop that? Yes yes, currently It's not yet out, but somebody is working hard This week to put that out the beginning of next week. So we'll have a tutorials Basically tutorials on how to how to create these schemas Python tools as well that we're gonna put out definitely So if you're looking for a challenge, they're looking for more people so contact them if you want a challenge We've got a new participant today, so excellent So, thank you