Arkansas PANS/PANDAS Advisory Council

All right we'll go ahead and get the panda pandas Advisory Council meeting going If you don't mind if you're on line soon Dan I can kinda see your name in a county cannot pick up a few of them so if you would go ahead and and introduce yourself if you would just so everybody in the room in there knows who's on the on the soon please. This is Dan honey the insurance department. The board of nursing. Joe to listen from the Department of Health. Same with you a message children's cancer and just click. That price herein on the Council. But else. All right in here we have representative bro who's up first time representative coming into a meeting so glad to have him here Dr cloud and we've got to representative warned and as far as any opening comments represent warning anything good okay of we get the consideration of the approval of the minutes for the December thirteenth need get a motion and approval for the minutes please. Motion by representative cloud second by represent worn any discussion or questions. All favor say aye. I thank all right thank you we're gonna get a and and first of all let me ask everybody that's on the zoom everybody have access to the material for the meeting today if you don't wave your hand or something but you should have been able to go we emailed should be an email to you the agenda and any supporting documentation may be covered most of it's gonna be verbal today no I don't think there's any attachments really but your regular access to the agenda. Okay all right if we get to mark what come up for items C. which is going to be an update on the Medicaid rule for authorization of off label use. A drug treatments to treat the Medicaid beneficiaries diagnosed with pain and pandas mark if you would your name and title for the record please. Thank you Mr chairman mark white chief of staff and if you're directed part of you and services okay. All right so we are working on the rule to implement Act six thirty seven sure get that number right yes six thirty seven from the general session we're right is we have finalized the language for the rule the lotus offers relatively simple was more complex is identifying all the places changes have to be made in our rules and also the Medicaid state plan we've identified there's for parts of the Medicaid state plan that need to be amended to implement this as well as twenty to make changes to three of our provider manual switches the hospital physician and nurse practitioner manuals also we're working on those we've got the language together this week our staff are finalizing the editing and formatting to get that ready will be running that through our internal approval process these once the secretary has approved it it'll go to the governor's office for approval and then once the governor is approved then we will publish it for public comment the thirty day public comment period we're expecting that it will come to the legislature for review in may aiming for a June one approval date are effective date skews me and then also just keep in mind that this requires not only state approval by the governor by the legislature it also requires federal approval by the centers for Medicare and Medicaid Services so what we'll do is once that thirty typical public comment period ends and we have a we know is a final version of the rule will submit that to CMS for approval R. as in several you know CMS has been also a very deliberate in how they are considering and approving things lately we've got a number of things that are on a waiting list well with them with that said I think this one should be fairly straightforward some hoping that there will not be extended approval process was CMS I do put that out there though that is if there's going to be a delay that's the most likely cost the delayed but at this point we think everything is. Contract that we can make may review and June one effective date and then also just one last point part of our process of putting rule together is to come up with the fiscal impact estimate so we can make sure that this is accommodated in our budget and we we have preparations for that preliminary estimate is that the total cost is about three point six million annually of that about one million would be state funds with the remainder being federal funds Mr chairman I think that covers the basics of the rule and where we're at I'll be happy to answer any questions okay first of all you'll committee members if anybody has any questions if you do just either way the hander now to yourself and go ahead and ask questions. Question this is Deborah Amos. I'm so with the language of this rule is this just allowing the children's clinic to be able to pass through Medicaid or is this for any provider in our state it's easy steps. This would allow for any hospital physician or nurse practitioner to administer the tree at a treatments for off label treatments I should say four pants panda with the understanding that in a course the act it has to be pursuant to the treatment plan that's been developed by the center of excellence at UAMS. So it doesn't just narrow it to the as long as it follows the treatment plant of the center of excellence it will be covered. Correct yeah that the key pieces that they'll be proper session process and that's what we used to confirm that there is a treatment plan in place that's been developed by the center of excellence as long as that's in place then the yes that should be covered for those who are Medicaid eligible. And when you say prior authorization you're talking about from the center of excellence not from the insurance companies because that that's kinda scary to some folks right now things are going to beat it be DHS through one of our vendors but we have very strict for process and again the only purpose of is just confirm that UAMS the senator excellence has develop a treatment plan that is being provided in accordance with that treatment plan. Never did you have any other questions or the good. Know that answer what I need thank you okay represent war did you have a question so you'll free Mike. The. Thank you first for being here procedure your time today. Would you say the of fiscal impact was. Right now our our initial estimate is a total of three point six million annually six okay and then of that state funds be about a million and so the initial for the when this first because an affected you'll go in fact no month within the fiscal year and so there is a smaller cost for that initial period but annual cost is that. Just a curiosity how did you arrive at the I don't I know you got to have a starting point somewhere just how did you come up with that number I'm not certain about that our finance staff prepared that. I'll say typically we do fiscal impact assessments we try to be very conservative and so we assume there is going to be broader utilization you know there the you actually utilization maybe less in the end but we would rather err on that on the side of too much of an impact than too little because we wish we were prepared for and if I remember right Arizona has already been through the approval process for Medicaid out there getting reimbursed for CMS so we they've or kind of blazed a pathway forward that we're kind of fallen in behind that which appreciate your realism about CMS and the challenges of working with them but optimistically hopefully with it already being approved in Arizona we weren't hitting road bumps with them already being under the approval process yes Sir I believe it's fair okay any other questions for any other members. I just like to make a quick statement if that's okay sure. Go ahead go ahead Richey I just want to share one thing personally like I really appreciate it best because a couple years ago my own personal story was my son was on Medicaid at the time when we were denied the Medicaid and we went all the way up the chain and we could not get it approved and it was vital for him he ended up in a facility a couple times and so for me like this is a huge win. Good. Good. Public comment period starts when again roughly. Roughly would be we cannot days back to make sure to the current. I would expected to be around the first of March would be the start public comment period. And would it be appropriate for a parent your committee members or members of the general public to be supportive through public comments in order to help with the process absolutely we certainly we we solicit and want to have those public comments even just supportive that's great but also if they see any concerns with what's House worded or any provisions we certainly hear that as well make sure that we get it right the first time in that there's no hiccups later because of a I miss changing the language would you do me a favor when you get the a rule ready to be released for public comment would you send it to Emily and Emily if you would send it out to the Advisory Council so that we can make sure that they have an opportunity see without him to go. And look for yes Sir all right Sir so Advisory Council gets sent out to you and read it you any suggestions by all means you can email back or you contact represent warmer self and will be glad to help articulate or get your questions answered if you have anything about it and the other thing it. Excuse me Code the other thing is the other thing is To make sure that you utilize your network in your resources of people that are affected by panda pandas to send in their public comments to be supportive that that I think will be very helpful to to continue to push this law okay any other any other comments from anybody. Yes Sir a. Or representative Dr cloud thank you Mr chairman thank you mark. On the prior authorization I'm one of those that makes you nervous senator Hammer referred to if if all the ducks are in a row as far as the clinic and everything then in your office will there be a dedicated person to handle that that that process in can you give us an idea of. What you might think that would taking time lies. It's we would not I would not expect to have a dedicated person or office simply because that proposition process we have a vendor that handles that for us out out of state they would have staff to be dedicated to that instantly through them and force if if in the end we we need to have someone dedicated to it if there's sufficient workload certainly will look at that and provide whatever resources are necessary time wise I would expect to be very short approval process because you know as I said the the the point of the process authorization is just to ensure that this is present that treatment plant from the center of excellence and that should be a relatively straightforward and quick determination would you define a short period of time for me I would expect within days. Multiple days at the end yes Sir days at the most is what I would expect. Okay. Dark cloud is your point that if it gets ordered it's going to be because there's an acute need of the patient that needs that treatment sooner than later and we don't want to see that drag out over weeks or months where correct okay timely timely approval. So we'll just have their matter record okay absolutely absolutely and and we'll make sure that the vendor understands the need for addressed in these properly and timely okay or any other questions from the members. All right of thank you for being here and up thanks for the positive report. Thank you Mr thank you members thank you all right we're going on to up in membership you're zoomed in and you you've got a question you want to comment just interrupt and and speak your name because kind of hard sometimes read if somebody is want to up interjection and so just you're not gonna be rude if you just jump in call your name up we're moving on to item D. which is the update from the university you M. S.. Regarding the clinical data patient resources and we got actually center online to give us an update Michael yes Sir all right of center you will go ahead and take control and give us the update report please. Actually doctor Rainey has jumped in so if you need to talk to her directly she has just a few minutes and then I will follow if you want me to that would be ideal thank you thank you thank you doctor rainy for for joining us can you just give us a perspective of from your point of view of how things are going or share what you want to share with the Advisory Council please. well I I just walked in and I don't know what the discussed before but I do feel like I think that we're seeing a lot of patience we what sandy triaging if there's anything that you see is that thank you possible needs we try to schedule them in even if we have to make it a separate clinic dated outside of our typical clinic days to make sure patients are taken care of so I I think it's going up pretty well and firms that haven't seen the triage. Okay in change you get closer to my occurs at on our end and. Okay all right let me just seal the nasco and we appreciate your we appreciate you up step in in York last minute to me so but I'm only up to the Advisory Council and ask if there's any questions from council members that you'd like to ask doctor rainy. Okay the and made them get into Michael's turf here but the clinic is going to two days a month is that right. Full day it's yes. Okay and and are you are you and maybe this is kind of mingling you and sandy altogether but up is that sufficient for the number of referrals and the one it is that sufficient for now or do you anticipate that based on the trend that that's going to push to further days down the road. Or insufficient so far. We'll just have to the I mean in terms that we need to it just further we can do that at some point in the future. Okay have you got a few minutes to hang on. A doctor in a few minutes to hang on or how long you got. Four I have a patient coming at ten thirty so I need to get off a little before that ninety four okay let's do this let's let's seem to give a report Chief that generation questions for you and then we'll be respect for your time and when you got a jump off give me about two three minutes heads up okay. sandy will go ahead give your report please. Okay level that they have must let. I didn't for them if you want if you can share them from your screen. Call may take me a minute As a city where you get that together all I can give a little bit of an update to to steal some of your thunder and then they're stopped at the time okay one of the things that you're going to see from standing here in just a second with her grass is we have seen thirty three patients this past year which is I believe triple from the year before with the majority of that increase be in the second half of the year in the second half of the year of sandy came on board and join us refine our processes for referrals and refine our processes for follow up and it allowed us to begin to see patients one full day a month them because of the work that's taken place it's really been interesting to see that as word has begun to travel if there's an initiative such as during pants pain pants pandas awareness month as we had in October that. Instantly began an increased number of phone calls an increased number of emails and just overall inquires every time we have seen a distribution of emails distribution of information such as what the health department did with all the pediatricians we saw an increase in the number of phone calls and an increased number of appointments that were set we anticipate as we do that each and every time going forward we're going to continue to see increased number of inquire is and therefore increase number of appointments and so we're being very specific and very strategic in how we do that to where we can maintain our capabilities with the with the capacity that we have looking forward and trying to figure out when the time is to again increase capacity on down the line and so it's it's a very positive thing to look at what's taking place in the past as we look forward okay I tell you what there's a question we'll get to doctor rainy up so they should just kind of hold a second doctor rainy. The the thing I'd like you to weigh in with bill with the little time you've got is we're gonna have a focused discussion about collaborative position model and arrangement would you give your input as far as what you think of should be considered in a collaborative arrangement with the sessions around the state and the center of excellence so that we can incorporate more physicians into the model. And. I guess that What we do now is we are we are able to call seating we need to communicate with them we do that you're saying in terms of training additional like it's just getting the word out more that what that what you're asking. I guess and I respect that you got a jump off here two three minutes while wandering up Michael's programs Michael's gonna dresses met but I want to hear from you personally as far as what you thanks some key components are that need to be included in a collaborative model of let's say a physician in Northwest Arkansas that thinks that they have a child they to get sent down to the center of excellence or there's that collaborative arrangement between the center and the physician in Northwest Arkansas that trick child can't travel down to the center what are some of the things you think that need to be included in that model from the center of excellence physician's perspective. Well if they can't they can travel and there's a question as to you know whether the we need to do the assessment then but then in its best and in terms of trying to accommodate the patient schedule the family schedule we also have done Some if it's possible to do some by telemedicine we have done that it's best if we have a position on the other side actually the physical exam side of that because obviously that's something that would be hard to do but I telemedicine In terms of training we are working on getting additional videos getting something else I guess just any. US talking about the diagnosis and what to look for and get that on the website and then we are going to try to do some grand rounds in different places there is a he's Vice that Arkansas children's hospital Los in they will that broadcasts you we've done one of those already but it wasn't reported we did that in the past year where we see it broadcast new applications around state We didn't do a presentation to Yes it was last year probably it was probably around February or March actually last year that we did was broadcast and prostate. And if a physician needs to zoom in to do a telep to do a telemedicine would that be during one of the two clinical days per month that that would need to be arranged or would that be based on what your individual schedule allows along with the other position and you know all that maybe that's what saying he's going to do is help you know facilitate that if and when it gets to that. Yes that's so far that is what we have been doing already we try to get them on the date that we know we have time blocked for the clinic other than that then we try to just make our schedules work together which is sometimes hard but we have been able to accommodate every family so far that's need to be seen the lesser some. Other scenario that comes up that I can anticipate I think that we we've been working pretty hard at trying to meet the family's needs okay. All right any any questions for doctor any I know she's coming up on our time she's gonna jump ball thank you any other questions for doctor ready for many of the Advisory Council members. Okay Dr rate just hang on as long as you want to when you gotta go you gotta go on will it sandy I think she's got to slide presentation up now and sandy will go ahead and present please. Certainly can you send us lands. Yes thank you. Okay. So this is our twenty twenty one wrap up and as Michael said we've seen thirty three patients to date for twenty four through twenty twenty one and as we move into twenty twenty two this is gonna start totally over with zero so that we can kind of get a better idea of where we're going after all the changes have been implemented. As you can see we still have a quarter of the state is not released presented itself yet. However our. out of state continues to grow as well. again this will start of zero with next year's slides. I have added a graph here based on your request about how did people hear about our clinic and currently we've got about fifty percent of our patients coming in through a healthcare provider now this can be the P. C. P. at their best. Social worker any kind of healthcare provider the the that sends them to us the other fifty percent are divided between family and friends and that includes your Facebook You're in your Facebook is is separated out family and friends is strictly word of mouth. The internet Facebook itself searches because our patients are either finding us through Google or finding us through Facebook and so I turned the groups those. To make sure that those the categories that you want to know about want me to follow as we move into the new year. The bar graph at the bottom is the same mark right here used to seeing with our non cans versus our plans for the year and again. We will just add a new bar for twenty twenty two. Our outcome data in the pie chart is just continuing to grow and that is another one of those that. I'm trying to discuss with. Everyone involved if we want that to start over at zero for the new year or if we want to just continue watching how it develops as we move forward. Could you could you email those to Emily so she can get those out to the council members please. Email that to. Presentation. So. Any questions. And questions from members. Are you have a good good ever. I don't think those numbers are great and sandy I appreciate your charts they help me actually see what's going on. I don't have questions about that but I do have some questions and some feedback for the clinic because I am so integrated with more the parent side of things I a as I said before like I hear things people come to me and they're like what do I do and so I like I kind of feel like I have some that liaison role as well and so I do have some concerns about a recent patient and I know you can't talk specific patients and stuff like that but I do have some concerns about some protocols and things that are within the clinic and so and and I'm I'm and for me it's like I have the benefit to come here to I know how other kids have gone to other places here in the state in like what's been done and how things have been followed up but I know of a child who recently had an IV IG treatment and it to not go well with a few different aspects of it with the the pre education part and then the the follow up after and and people being accessible and trying to figure out like where they needed to get because he had problems after so I just want is there a way that we can address this within the clinic that there is a better parent education part before they get treatment but also that there's better protocols in place of Hey if this happens like this is what you do because I was really concerned I've been on the phone with them like the last for a while like every date I'm trying to see if I could at least give emotional and spiritual support I can't do the medical support but I can do the other two likely when I've been talking to yes yes I mean I know you know exactly what I'm talking about so and and I love I personally love this family I like I'm the one you actually initially first. What this family into this wall and so I I have a personal connection with them as well and so I just was concerned you know I spent some time on the phone with my mom last night and I knowing just how even still in hospital has carried out some of the things after I wish we could get some of those things in place for children so that they know what to do because likely this family did have resources that they could take care of things but if it had been me or any other family they would have been able to take care thanks as I have expressed to mom. And as I continue to stand by. Every time we experience an opportunity for growth and improving our process I'm taking notes are all. And this this one will also have. Several notes for performance improvement as we move forward I don't want you to feel or mom to feel that their situation has. Of. Not got my attention okay it will but again this is a rare occurrence and. We don't give IV IG awesome. And when we do every time we learn something about how to do it better next time. Whether they're right in our backyard the distance. We have different. Opportunities to better support that family okay and any I don't know if it would be helpful for me to even connect with you with other families like what's helped them absolutely. Call me offline will talk all day okay all right I guess I just think that would be helpful to see what has worked at other places sure. One. I don't know if I do so we can we can switch that after. Thank you. Yep send if you'll email it to Emily shall get it directly to Debra okay so that you can get the direct line information that that sound okay. We all right Michael. I think Mike is muted okay we'll make sure that that phone number get shared with with them I appreciate the opportunity number in the chat line. and it is published it is on the website it is everywhere okay that number you want to call ya. The okay so feel free to call me directly. All right. Never that they get you where you want to be. Yes because I mean at the end of the day my goal is just these kids have the best opportunity they can what ever part of procedure we end up going with them like just making sure you know eight if we can get things in place that make it more streamlined I'm a huge fan of that. In particular had some issues with their my chart set up And so their direct access to me. Wasn't is as streamlined as we hoped and I'll as soon as that became as I became aware of that I took steps within our epix system to resolve that and so that took a little bit of a minute the. To get them connected to me I got a chance I just I I'm even hoping we can do some more like education before Blake here's what to do here's like kind of like when you have a procedure or surgery or whatever you get that sheet and it's like okay if this happens you do this or what to expect in the next to follow after absolutely. Okay all right anything else sandy Gates thing else on your report. The okay if you'll email at ten we will get it up we'll get a push up anything. All right let's move on to E. which is the discussion of the collaborative position model and Michael you want to go ahead and yes Sir Mr Mr chairman actually E. F. and and G. R. somewhat all inter related and so if I could take the liberty will go back and ask questions about specific components of it but I want to start off by by reflecting a little bit. this last year has been a year of great achievement we appreciate to the council for their encouragement in their support of the legislation is been passed rule one twenty seven was implemented from the department of insurance regarding the coverage by private insurance we'd you heard earlier today from. Permanent Human Services the process for Medicaid coverage we have increased the number of patients seen we are actively involved in incidents and I be incident study which is gonna lead us establish the prevalence of this disease in hopes of seeing if we qualify as a rare disease or not in addition to that we are one of the few locations in fact the first location. Or the second we kind of go back and forth with Wisconsin about whose first and who second for the IV IG clinical trial and we're we realize that there's a lot of opportunity for us to continue to to grow and expand but we're building on a foundation and I have the framework as a center of excellence to Really really do a lot of good in the state for for those children that are that have this diagnosis and in support of their family one of the things that we are working towards is collaborative physician model similar to what they have done in Arizona. In Arizona the clinic it is utilize someone as Mr Ryan said as a validator and that and roll can can take place a number of different ways one that can be called in for a second opinion to review what's taken place in a in a treatment plan and I can say we can say yes that's the right way to go we can say no second secondly we could possibly say no and provide options for other treatment methodologies for the patient or we might say the clinic may say may be we really need to have a consultation that we need to see this patient. To get to that point though is going to take some work and that's what we're in the process of doing and that's where a part of that comes in regards to the grand rounds as doctor rainy has mentioned that has been done previously with not just pediatricians through the children's hospital pizza place and their network but also with pediatric neurologist across the states unfortunately we didn't record those but now that we know the importance of recording them we're in the process of working and getting those scheduled they will be recorded they will be posted one on the website in addition to reaching out to PT. Pediatric pediatricians and pediatric neurologist at we're also going to reach out to the academy of family practice physicians as well as nurse groups and look for opportunities to continue with grand rounds type education. We are in the process of you're doing what has been done in Arizona and that is Arizona has a three to five a series of three to five minute videos and we're in the process of having a script developed for those to be found and we can have those on our website and utilized for training purposes as well. And in addition all the statewide organizations that have an interest in in this that I have referenced earlier also have publications and we we hope to have articles placed in those as well. We realize that sometimes You are referred to our clinic in a time of crisis and so one of the things that has been suggested as we we work with the crisis intervention centers and we're going to work with those crisis intervention centers and including some of those that have been contracted out such as the mid south health system which represented Ladyman mentioned last month interestingly they have more than five hundred providers throughout the north it not just the northeast part of the state but also the Delta part of the state which would allow us to expand our efforts and further educate providers in a part of this state that has yet to route to refer a patient to us so we see that is being very positive. So it is our thought that through these efforts we can begin to see implemented to a more collaborative effort and working with providers across the state to where we are involved in in not only refer having patients referred to us but being involved in doing second opinions and again working on a a more collaborative a collaborative manner I know that's kind of broad but our I wanted there's a lot of leg work to be done and I just wanna make sure you're aware that we're aware of the work that needs to be done and look forward to reporting in the future those things that are good that we need to do that that will be completed in support of this. Mr cherub open up for questions for you or other council members. All right any members from any of the questions many council members first. Mister chair I don't really have a question I just want to make a comment that that goes to some of what Mr cake was speaking to about getting the information out to providers so you know that you M. S. had made a nice I think it was like a seven page brochure it's really five because the first back page mostly a picture graphic with some contact information that we that went out last month to the state eighty eight the chapter the versions Association state chapter and they sent it out on the twentieth so that's already been out from them and then just last Friday Mr cat got me the revised version of that and we sent that to the Arkansas chapter of the family physicians chapter that he mentioned working with and so they'll be sending that out hopefully with their next a regular communication you know the kind of group homes and every once a week or something like that so they're going to confirm with me when that actually goes out but that that should you know reached hopefully that and it's a nice it's actually nice I information is not just kind of an introduction to the clinic it also talks about the disease itself and give some education for providers so that has gone out to those two groups and could easily be sent you know if there were other primary care groups I don't you know I don't have any connection with I don't even know if there's for for instance a similar state organization for nurse practitioners but that might be at another place that that could go to and they could distributed to their members if they were willing. And we we will be contacting suited for the nurses with the nurses represent we realize there are different specific categories of nurses that again I go back to something I referenced earlier. Every time we send something out. Sandy's phone rings right now if the waving the and say they will correct me if I'm wrong but as inquire res come in for referrals either from patient families or from other healthcare providers there's a packet of information that is sent if those packets of information should all land on sandy's desk sure we could be booked through April by the end of the day now we realize that that's not going to happen that summer gonna decide they don't need to come see the payments come see it come to the clinic some may have discovered a different diagnosis and so we want to continue to get this information out but we also have to be careful in how we do it in order to make sure that the clinic is not overwhelmed with inquires because the only thing to me that would be worse then not having information out there is to have information out there and not be able to have patients referred to the clinic because there's just not capacity for several months. Okay. Up to that point let me ask questions it kind of drives then. The discussion for the necessity of expanding a collaborative position model to where if the clinic is only meeting two days a month which is great this is all positive move in the great your direction like Dever said while ago with the Medicaid you know we're taking bites of the apple But if if the clinic is only two days a month. And. The need does become greater to where it overwhelms sandy in the clinic. What what did Arizona due to address that to where we can take advantage of providers that are on the outlying area and through collaborative agreement. Introducing the grand rounds for educational. But what we do there or what what were your conversations with Arizona as to how they address that. Senator one of the things Mr Ryan referenced was the. And not only the continuous education and training of providers which we certainly or we are going to do but also the availability of the physicians to discuss doctors representative Dr Rainier both very busy Sanders very busy nobody sits around looking for something to do but there is a willingness on their part to make themselves available to talk with about cases with providers around the state to talk with families and and so we want to continue to build on that availability and that's something that I think is just as key as anything else is is their availability one of the things also that that. Mr Ryan mentioned was. It. To get to move along in the process to expand capacity to develop these collaborative agreements does take some time and it's not something you can flip a switch and and see that it's there it in fact he mentioned it takes one to two years for these relationships to be established for these collaborative Partnerships to be in place to where people feel comfortable in and working with the clinic in a number of different ways and so I think there's two parts to it one we're going to we're going to move forward but. We're also going to move forward and in such a manner that. That we we do what's good for not just the physician. Not just good for the clinic but what's best for the patient the patient's family. Is there benefit. To recruiting physicians. That may have an interest in in taking a larger role in this in the Lao outlined areas to where they could you know through the grand rounds or through To help expedite that relationship. with doctor raining Dr panda's and sandy do do we need to put forth an effort to try to identify who they are so that we're not just appealing to the masses we I would be good I understand Sir what you're asking and I would I would be willing to have that conversation with doctors rainy and and very opinion to see if there's already some relationships that exist that are in place if there is an awareness of specific areas geographically in the state where we've received inquires from physician groups I think those are some things that we need to work through sandy of if you wouldn't I got the signal for me to be quiet I think and for you to answer that question so I'll defer. In relationships that are being built as we speak it's it's. It's impressive to watch how with a physician that doesn't know anything about and sends us a patient hi there knowledge increases and that the dialogue begins with them and my doctors and when that happens you have one doctor that's in a rural part of the state and then that eighty educate their team about what Hanson again this is and then it's like that little fire burst and then that's one of your first and so just over the past six months in my role I have seen that happen in numerous little. Little pop up. Fires if you will. For education and a thirst for knowledge because. As as we have said multiple times this is this is a rare disease this is the disease of exclusion and so we have to rule out all these other things. Before we can say one hundred percent exclusively it is yes and so as as our physician partners around the state began to understand more about. What happens is they also have to understand what hands isn't. And. That is that is happening just. By the nature of the beast I hope that is answered your question it's going in the right direction I think what I'd like is as you develop those relationships if we could get a list Of who those relationships are being built with maybe that would help I'm talking out loud I'm wondering if that would help. Establish or build A greater understanding of the kind a network we're building out of the state if we knew where those locations were that you're that you're bringing physicians into the fold of understanding. I guess the hardwood. And we we need to think through that I appreciate the thought and as we think out loud and how we move forward that there may be something there that we can work with I'm not gonna say yes but I'm not gonna say no but I think I liked I liked the idea so okay what what are the what are the parameters for defining collaborative. You know it's in Arizona it's relationships and and working and it's not a contractual written agreement and there's some situations where that's how these in other areas aspects of health care that's how these things are established we haven't looked at it from that person's point of view we've talked about it strictly from a relationship perspective. Because I'm you know as far as meeting the definition of collaborative for the purposes of insurance companies or Medicaid not pain I think we're gonna have to maybe have some kind of tight I know becomes on the center of excellence as mark shared while ago that meets the criteria. But if we are going to have that collaborative position model docked out I'd be curious your physician and you want to weigh in on this I think it would be good if we. Understood. By definition what collaborative means if it's one of these of positions in outlying areas that you know has the thirst for knowledge like sandy said while go when they meet a certain number of grand rounds are they can show they you know watch of certain number grand rounds or whatever it is I I just think that would be beneficial and it is that in writing out in Arizona or is it kind of just a loose template. It's my understanding it's a loose template but I will I will confirm that with Mr run okay. All right in it again I want to make sure that we understand that the the diagnosis and then the options for treating hands pandas are broader than just IV IG and in working with and collaborating with groups but I would anticipate a lot of the discussion will be not only the steps that have been taken in making a diagnosis but also of the steps that are made in treatment and sandy if if that's accurate or a five misspoken please correct me. Okay well. One of one of the things I know doctor raining Dr panda are we going to be able to tap into the grand rounds that are already existing out in Arizona are we going to Well the roll doctor any doctor pan well we will build around doctor any doctor painted but as a in the interim the the grand rounds from Arizona we were in the process of having those posted on the website and then we will swap out when when our server are available to put out there okay any idea when those are going to be on the website I will hopefully have an answer to you by before the end of the week hopefully it'll already be done I don't think it's that difficult of a project but about email to Emily and she can email it out to the Advisory Council that way members that want to go up and watch him or you know through the network we're trying to build out we can. Of make you aware that I don't know with everything wrong with trying to utilize like the A. P. R. N. network they are in the school nurse seen the PA's to at least put out notification to them that the date these grand rounds are available for you to watch I know you had a question about overloading the clinic in sandy go ahead send. I need to preview those videos but I'm pretty sure that a lot of the videos from Arizona are very specific to their clinic and how to access their clinic and it would not be. Worthwhile for us to post some of those because it is very specific to how to access their network. So we're going to use those kind of as a template. To to patter hours but I'm not sure how many of them are just generic enough hands information that we can use okay so I would I would rather pause for just a minute. Rather than promise that they're going to be posted until we have a chance to review those with that in mind. About this when you talk to doctor any doctor pandas and you get a an idea of when that can be done. Once you have that conversation feet email at Tammy so she can put up to the council and then that way at least we kinda known expectation understanding the demands on everybody's time about that lately okay all right are there any other questions from committee members and I'm I'm gonna ask just on Ian F. because those are the two closely related. Once any any questions remembers about the N. F.. Some and I had a lot to say today okay sorry. you different things number one going back a little bit can we see the pamphlet that eighty H. dead like me is there a way for us to see that this going out sure that's be more than happy I'll send a copy again to Emily and then it'll be it can be circulated I. I believe that was made available a couple meetings ago so but will be happy to try to share it is that the U. a mass one yes same on okay I got confused that there was another pamphlet. Okay I'm other this is just you know me like listening to all of us kind of like trying to pick up part this big gigantic puzzle and like as a council I feel like we really need to prioritize what the most important things are. It can go in order of this because as a parent and I know some other people that have kind of been in the state for years is like there are certain things that come to the top of the page is like we need to focus on and one is not in if this kind of stems back to senator Hammer is like collaborative conversation but like it goes back to even crisis management late we have kids that are in crisis and yes I know about the phone number some don't and people are just learning right now but like I really feel it's vital that we have the plans in place but that is part of the collaborative pieces well why I feel like that peace is so important that we don't neglected and it goes to the top of the pile because the last providers that no they can intervene immediately the more kids we have either eight getting worse. Be taking their lives seat like family is falling apart completely because we're not taking care of this vital steps first like yes we need to get this insurance stuff through yes we need to do that but if we don't have a plan and an actual structured plan of this is what's most important and this is where we need to come from I feel like we're missing the whole entire piece of this. My question you got a response all right I completely agree crisis management and awareness within those that that are treating those that happen to be in crisis is is something that's that is a component of this and I appreciate very much what it was saying sandy. I completely agree I just I don't have an answer of when a parent calls me in there it is in crisis. Answer is always take care of the crisis first if that is infection if that that is a you know a real health. Crisis take care of the crisis first our clinic come second or third down the road If they need an inpatient stay in a broader children's it will get on get on the bed that's that's the only thing I have at this moment. I wish I had a better answer. But you know. There really isn't one because we can't say that. This particular behavioral health place is is the best because for that particular kid it may not be the right prices with my right location. And so. Again getting Education out across the state is is our first wait AT the brochures do that and I applaud you know doctor Tomlinson. And the powers that be forgetting that out to these providers you know and yeah I may get swamped and I make your phone calls. The beautiful about this is with that very first phone call I'm making a connection with that family and even if they're on a waiting list for a few weeks. They have my number they have made that connection they're looking at the things that we're gonna be looking at I cannot tell you how many parents have given me the feedback of you know looking at that intake packet told me what I needed to watch for things that I didn't even think I was seeing in my kid your intake packet helped me to figure out. And things that I was focusing on work anywhere in the intake packet so they weren't relevant in so just that initial dialogue and that initial interaction and you know like that said. If I can be that voice on the other end of the phone that to help that mom that's part of my job and I I I hate that it took a minute for the parent that she's referencing to get in touch with me but as soon as that contact was made eight there was daily conversation we only reason agriculture yet today is this meeting. Yeah I mean she's on my list as soon as I hang up this this call to call her. And so while I'm I'm not a behavioral in state I'm a least a voice on the other end of the phone. Let me take what difference saying and look at Adam G. because immediate immediate ability to respond to a crisis situation. And do we need to divided into two categories one category is for those that we know have already been diagnosed with panda panda is a maybe they are you may be having an acute onset of something the second category would be those that are having something going on and it's not been figured out yet what it is and for all we know it could be something else other than pain or pandas and and how you differentiate when a child or family presents looking for help. And and and listening to the conversation. If if we know it's a family that has been diagnosed with panda pandas. How would we handle that situation if it's Saturday night at nine o'clock. Or Tuesday morning in the morning at nine o'clock if it's an acute outbreak how how do we meet that need. Sandy if you'll you'll take a stab at the police okay As we have said with it being a rare disease. The thought initially is going to be. Treat whatever crisis is happening and assume until it is diagnosed that is not because if you've got a kid with suicidal ideation deal with that. Don't worry about ideology or getting them in my clinic take care of their suicidal ideation and their behavioral outburst first and then we'll deal with the pants pandas if that's if that's applied. If it's a kid we have seen and we know what's going on and we can get them in sooner rather than later to get a subsequent treatment or a new. Plan you know so many things. If it if a kid is in crisis. Can be done but it's all you need to that individual circumstance. And while we are an outpatient clinic. We're not a crisis center you know once we get the crisis manage their by the ETC or behavioral health facility then were were subsequent. And. You know the more people that know about is the more people that understand this diagnosis the better. But handling the crisis whatever it's. In this role is the priority if it's an infection treat the infection if it's a behavioral issue treat the behavioral issue if it is patients harming themselves treat the patients arming themselves. And go from there does that make sense. It makes sense but let me. We we've had a discussion about up you know about how to deal with the statewide crisis network and I think that's kinda where the conversations warns gravitating to is how to work what does that network look like I understand you know when you say if it's a suicide treat suicide which means they may end up in Bridgeway Riverdale the E. are at the hospital. And then the process of figuring it out takes place from there if that's a if that's up a patient who hasn't. Already had the panda pandas diagnoses it's gonna be a little bit harder to figure that out because are we looking at other contributing factors that may be you know creating that sensation of suicide. If it's but if it is a pander pandas patient. One of the conversations we had last month and it's on the agenda this month is do we need to look at establishing some sort of a crisis network. Until they can establish connection with the clinic if they've already been through it or doctors working with them and and I'll say this the the reference to the What Cinco the representative Lehman mentioned I'm drawing a blank crisis intervention righteous intervention centers yes Sir yeah those are set up those are set up for legal issues they're not set up for mental we can't use them the models there that may we could duplicate what we got to figure out geographically where is that is that a solely memorial dedicating a rumor to that says if a patient presents itself we're going to use this room for that situation or is it children's it's gonna have a couple rooms or I think that's part of what we got a. Talk through is if we if we think there's a need for crisis stabilization. Unit or units what does that look like if indeed we think that's what we need Debra's that kinda where you were going in your thoughts on that. I'm sorry. To go side rail but that's okay I mean where I was coming from was even more towards the council as a whole everything we're doing because room leak there's a score they created all this and then there's the center of excellence that came from this so I'm going back to the the initial lots of. Making sure we're thinking beyond just the center of excellence to make sure that every pocket and this comes back to that word collaborative that like just keeps coming back to me today making sure that we are taking care of situations where you know you know making sure providers are educated but also you know the crisis management yes beyond even the center of excellence that these kids are being taken care of but also people are being educated everywhere because we have talked about you know Rendell's got in contact with us with being like a safe place for these kids I will tell you my kids story is what change Ribbon else views for this cat my kid ended up you know he was suicidal at the age of eight he they said they've never had an eight year old try to that they were more sure or would do something but we ended up we took a leap of faith we start giving him antibiotics in there and that was like he was never officially diagnosed even before that but he got he wasn't getting better on psych meds so having places that are knowledgeable they can look at both sides of the coin I feel like it's really important pressed outside of even the center of excellence Blake I just believe there's a bigger conversation here and even making sure providers you know can do those root things like that they're educated enough to be like Hey we need to try to round of antibiotics or we need to try around of steroids I if there's just such a bigger thing here than just like well you know we're eventually going to talk to people and collaborate and do that but like we can't because that is part of that crisis is a question we can't wait on that I think you just nailed it I don't I mean I get notes from all over all different types of providers and I am seeing it shipped. I'm excited about it because the notes are now saying it could be and I want to send them to the center of excellence because. I'm not equipped to make his diagnosis but from what I'm learning these it's taken some of these boxes and I am very afraid that if we call it a collaborative or a small group or whatever working in this all these different places outside this circle. That need this information. And it could be. A kid. Where ever going to a place that's not the circle and then slipping through the cracks. This I would much rather throw a broader net education so that they're willing to try an antibiotic if the the psych meds are working or you know try something a little bit out of the box like over the counter leave because nothing else is working and lo and behold that works well you know. Because they got to make the education. I'm getting when I call it a collaborative it's the notes that I am reviewing everyone of these kids that include a teacher note. A note from there cancel or or their crisis prevention place or other facility that they've been in. Those people know those kids better I don't want them to have to come to a place that we have identified in the circle. Just because that's what we've identified where there provider knows them best and knows that this is not their number one. Because that is what is so critical about this is it's a sudden onset something different from there no more. They woke up one day and it ain't the right team. And if they don't. Their PCP involved if they don't have their local councillors involved we're gonna mess this is a change in their normal baseline. Because we don't have that historical knowledge and discounting that historical knowledge of those individual kids is a disservice to now. Sorry I think you get a box. Are they represent warns guests of the once a. I'm listening here and unfortunately I had to another obligation last meeting but I'm sorry that I missed when representative Ladyman was here but I'm just listening in and I hear the the crisis part of this. And. I think that's a a broader subject and I know that there's probably some work that the legislature can do to address a broader crisis Plan I want to I guess I. And I I definitely understand whatever's coming from. I guess I want to make sure that we stay focused on the positives that we have had with pans and pandas I think we have come a long way To where we are right now triple the cases and successfully getting people IV IG up fully respect of what Michael saying that IV IG may not be the only treatment for this so but I think one of the other things that we've talked about is the awareness of pans and pandas we're starting to see some of that and I think the more of that that we get throughout the state. Which the pamphlets just one out recently. The more that we get of that the more awareness that we have. More people that can Connect with sandy and the server that we've got going. the more we can find out if kids really have the pans and pandas and get them properly treated. So I want to keep this moving on the right track with Hey we've made progress on pans and pandas but maybe there's another issue that we need to look at with all crisis type situations health ones that maybe we need to look at something broader for that but let's keep moving forward on the pans and pandas. All right anybody else. All right of got a of a got a recommendation. And this may of. And and sandy this is gonna of Michael this will. directly impact you also just wanna make a suggestion recommendation and she which shall think about because incorporating what dubber saying and what representative warned saying we've we've made a lot of progress but when you're in the thick of it ports of personally affecting you or has personally affected you I don't know that you ever can move fast enough but at same time we wanna make sure that we're moving expeditiously. I one of the points I heard this morning was about the resources we have in the clinic and not overloading the clinic on the other side of the coin I also think that there's a legitimate need to get as many providers out there educated as fast as we can so maybe even to help divert some of the stress on the clinic because the same potentially could turn into even bigger than what we thank all that being said. The last item on the agenda is about the subcommittees we got to subcommittees identified we had to deal with COVID I think we per will move past that What I'd like to make a recommendation of is that we would dissolve the two committees and we would have a workgroup that would be headed up by Matt probably and mac could work directly as a liaison between the council members but also working directly with Michael in with sandy and part of this is driven out of the fact that we're about to go into budget hearings starting tomorrow and then we're going to the fiscal session we as a council will not be able to meet until probably up in April because of the fiscal session and the budget hearings it's just a it's not allow will be it's not going to be practical that we think we get a meeting in. But we don't want to let things go by the wayside and so Michael would you be agreeable with that recommendation that we just up. We'll we'll we'll point Matt Bromley to to be a spokesman on behalf of the council members to work with you and sandy and keep moving on some of the sayings absolutely and and and then the cure the council can you know feet into Matt who can work with you that way we got up we got a stream is that agreeable to you Michael you bet we've we've got a number of things in place we're just working to coordinate to to get in meltdown was specific dates and we're happy to either communicate through Matt four through Emily the different things that are taking place so. All right ma'am that you're okay with that. Thank you said yes thank you think I am I want to go back to. What committees drive me crazy if the if if there's no work done in progress made sometimes that is about mainly Beth stop we when you go to for direction. what did said earlier in prioritizing what's most effective and useful right now in the situation that we're in which I believe the better situation we work three years ago but. I just feel the spinning of tyres so I want to get some traction in so I think you would start with. I guess I'm a little I'm familiar you said is all the current to which I think for budget reasons there wasn't a lot activity in But what what is is that for us to determine because I I think that's what needs to happen and some people get together. From from different perspectives and say Hey from your perspective what's most important have some action items and then have some key measurables this is what we identified in this is where we're. So maybe that's part of the subcommittee to begin with us just sitting down outside of this format insane what we all see is most important in my tracking on what needs to be done if I'm not that's fine thank you track in the right direction and and with a night and maybe not everybody. On the you know everybody on the council did necessary sign up for a particular committee and we we've tried that approach in this just being real transparent we tried that approach we've had some interferences because of scheduling conflicts code except a I think we're a lot further down the road and we were when we first started and there's no reason trying to continue a model that isn't being effective in my opinion to share I think what would be more effective is if there was a workgroup that would be headed up by you that could work directly with Michael and sandy over the next couple months of why we're not able to have these of council meetings and and take the conversation of today and and work toward As a team trying to keep those issue issues addressed and whatever you work out as a you know as an agreement that's going to help move us down the down the field a little further over next two three months shall be it but somebody's gotta be the point person to work with Michael and sandy. And I'm just asking you if you'd be that point person then we'll work through all the we can have some conversations as it moves along. I agree to do that. Okay. I just like to hear any input from committee from council members because I will put in the form of a I want to ask for an official motion in a minute but before we do any anybody want to weigh in on the suggestion. Reply one. Hey Matt I would just say that I think the you have our full support I mean if you said we need help here. At think we're ready to jump in I think it probably with the three of you. For a spear heading and saying here's what we're gonna do here's for the direction. I think we jump in and help you any way we could. Wealth one way in. I think this is vital in order to get us a little more structured with how to move forward with the best outcome for when we do meet up again and maybe we can structure that's a little better and prioritize what's most important and work out those details. All right anybody else. The family is the correct person thank my first request. Any it doesn't have to be just the members of this council but in the applicant pool contacts relevant contacts if I could get something sent to me email to me that would be extremely helpful to start the communication process okay we get that. As against. We can get a motion to Of. Discontinued committees and will we would appoint Matt to be in charge of a working group that you indicate what you I master Michael and sandy over the next two three months while we're in budget hearings and the deal with fiscal session and then be prepared report back to the council as a whole when we're able to reconvene if I get that kind of a motion something similar please. Second. Okay a discussion to the question or to a motion. All favor say aye. Hi in the post I. Okay all right that's all we've got on there Mr culture you any other no Sir okay anything else from any other council members. Say this enclosing. Impaired where we started where a whole lot further down the road and we're making significant progress and I think as long as we keep the focus on making sure that every child that is recognized as having this need thank you as long as we continue to work together to team as we've done we're gonna see even greater results on the thank you M. S. one thank children's hospital one of thanked committee members and will reconvene as soon as the legislative schedule allows us to do so after the fiscal session and after the the budget hearings no other business for the committee were adjourn.