Alzheimer's Disease and Dementia Advisory Council

State representative Julie Mayberry and senator Ricky hill And then all Take a motion to approve those minutes after you've had a minute to look at him. Is there a I was gonna say is there a motion senator hill makes a motion is there a second thank you David cook all those in favor say aye anyone opposed very good okay we will move on from our minutes and the first item for us to look at is the overview of the dementia care giver pilot program that we just kicked off recently and we'll have it David cook and Caroline berry join us at the. End we often go down there that way we can see you straight on. David cook is the public policy manager at the Alzheimer's association Arkansas chapter in Caroline berry is the executive director of the Alzheimer's Alzheimer's Arkansas. Hello. We we get we also like the SS harassment issue will also join us at the table okay so that's kind of combining C. ND together yes ma'am okay that's fine. She by the help for some of the questions that we might have. We wanted to just share with you some of the the details of the the brand new pilot program that was just launched and fully funded July first so it's week and a half old of the news being out there I want to share just a little bit about the structure of it to Adam and I asked Caroline to come talk a little bit more on her end I know wasn't association since the announcement drop we've we've gotten quite a few calls and request for the funds and Caroline also expresses morning they're they're getting hammered with calls so that's good news the word is getting out there so let me just tell you just a little bit about this program DHS has allocated funds in their budget to grants two hundred thousand dollars for a respite care grant program that's targeted at dementia care givers the eligibility for this this grant but we start with the funding first and so what what this grant will provide is five hundred dollar respite grants to individuals who provide care to someone who has a diagnosis of dementia so it is not tied to income there's no income eligibility is based solely on that acuity diagnosis of dementia and so if you have a primary or secondary diagnosis of dementia you you qualify as a care recipient for this caregiver grant care givers received a five hundred dollars and then they can use it to access respite services the stipulations on the grants we choir that the respite be provided for someone who who lives outside of the home and so you can hire a professional caregiver you can hire someone in your community who it was a care giver or you could hire paid services to come in and provide in home care or even facility placement that money can be used for a temporary respite in a facility. and so one of the other stipulations about the program that we thought was very important is that when we did some research we realized that existing funds in the states for respite services typically run out and so folks in an urban centers are able to to get those services what are folks in rural communities sometimes are left out because of limited funds and so one of the metrics of threshold we placed on this grant was twenty five percent of the funding has to go to rural areas so that's people outside of of northwest Arkansas and central Arkansas but the way the DHS has defined role I was going to be extremely helpful in terms of targeted relief for making sure that we do some direct outreach to those communities to just insure those folks are accessing services on the backend I'm currently working on a research proposal personal proposal trying to understand one of those barriers to accessing services are in the state and as we go through this grant process we hope to understand more about where the funds are going but more importantly what I'm interested in seeing is where those funds are not going and why those communities are not accessing services is it because of limited funds or not being aware of the program and how we reach those folks in those communities and and rural parts of our state to desperately need the help but are unable to access things like this and so there's a lot of things I I hope to learn from from this pilot I think the early attraction that we've gotten the media and on also just people who are eager to access the funds it tells us a lot about the needs in our state and the people who were just really needing that that that break and and that relief on a more personal front I'm seen that from from my mother with my dad as his he's had kind of some some tough couple weeks a saucy I'm seen directly the tolls how my mom takes the brunt. Of the caregiver stress but it's really interesting the dynamic in our family which I. Anticipate is not uncommon but my mom is having a very difficult time accepting services and respite and so even though this is my my my job it's also very personal and so I find myself facing that dynamic and I imagine the family's experience similar dynamics and trying to overcome that as a barrier certainly something that's active in the state so more education and we really want to rely heavily on our triple A.'s infrastructure just to make sure that they can get the the word out about this program that it exists but also the the need for for respite and making it OK normalizing the conversation arrested making it okay to take that break I saw senator hill and and remember and I've talked at length about the importance of education and just awareness around this grant program we we don't anticipate that it's going to be very difficult for us to spend through the two hundred we thoroughly awareness about is showing us that this this money probably will will go pretty quick which again is a testament to that the need that we've been talking about here in the state and so we want to make the the council aware of it I've asked Caroline she would come and share with us some early numbers that she has just about just a phone call she she's gotten a we're taking a lot of volume at the association but less Carol if you would share a little bit about the application process as well and just of course the response we've had. So yes our phones have been ringing off the hook so. To Friday because we had not received today's mail yet with thirty three had applied. we awarded nine to a total of forty five hundred dollars on Friday. So thirty three applications six did that and of those sixteen that. The primary reason was incomplete application and they lived outside the state of Arkansas. Where the two top reasons. I know that that's not happy is it perhaps at the family member the one with the Alzheimer's is living in this state and this might be a daughter living out of state is that a possibility I just had kind of. So the person that needs to hear Liam's outside of the outside of the state so of his former CD's kind of situation so historically we do help families live with distant care as long as the cure the person that wrist needs care the with the diagnosis live lives in the state but this is kind of like a vice fires. Canada's yeah odd interest also but we do receive a lot of calls from people looking for services like Alzheimer's Arkansas in other states so. I do help with resources and try to help people but we. It is no surprise to me but yes so thirty three. Six denied nine paid eighteen pending but of those eighteen pending twelve of them are approved and they will be paid. This week because will pay every Friday. Just to stay in in a in a cycle in of those that were paid of that now we have six approved rule applications. So It it up all the applications there are thirteen counties that have a plat. So it's thirteen counties that have applied here it looks like of those thirteen yet is six seven minutes rural counties. Senator hill. But when you're doing your your screening on the US and I was trying to trying to follow to make sure we don't get some fraud involved in in this are you requiring an invoice or anything after the services done yes so actually what happens is they get approved and we send them approval letter in before it is paid they do have to see and a log or invoice showing services and they pay me to requirement for services like if the if they're using a person outside of the home they have to have a driver's license showing that they are outside of that live outside of the home that they're eighteen and meet the criteria or invoice from the facility they use thank you yes. Yes ed you have a question Kerry Jordan. So you mentioned the types of rest but I'm thinking of that ASCAP program that you know about David like would that qualify for respite program like if. Or a caregiver support group with that with that qualify for respite. Just out of curiosity so a support group does that qualify so an adult day care does a long term care facility such that nursing home that provides respite care Hey hello assisted living that provides respite care. Anything to provide short term respite care. And you can use an in home care agency that provides services. And I have one more question about that Hello is this grant I get confused because there's two grants going on right so so like let's say somebody wanted to apply for this grant with the call L. summers Arkansas they create the call or downloaded from the website or get it from any link from a number of agencies that okay so it's not just Alzheimer's Arkansas it's a it's a group okay and then yeah how how does that how is this different than the other grant where people get five hundred also there the differences from the caroling grant is the caroling grant is from the title three. Federal grant it is for older people you have to be sixty years or older so it is at area agency on aging Grant and is it covers of. R. six central counties it can be any chronic illness. Not just Alzheimer's so sixty any chronic illness. And there's a income no there's no income hi. Just one more question because this may apply to some of the care givers I work with Can they get both grants in that it gives one time not at the same time no. But Dr Jordan to follow up they they can apply for this grant twice a year there has to be six months in between awards so they're eligible for two up to two five hundred dollar grants and I I guess senator who you touched on a question of like to follow before could There is a reporting mechanism that is required with the grant so in order to qualify for the next five hundred dollars that reporting has set up document has to be in into the office so that we we have that that record of where the the money went and we also have like that reporting mechanism on the back in. How can I think we had another question from a nearly Overton but quite from UAMS. Are we requiring any type of training or certification of the pair professionals or individuals hired as care givers to provide the. respite. As individuals not going through an agency. that's a very good question not as not currently as a part of this pilot I think that's an issue that would like to incorporate down the road when we look at more permanent solutions but in in terms of the pilot we wanted to make sure that the process was as simple as possible on the care givers and also we we we know that with with staffing issues right now in long term care assisted living and also in home health that you know adding that extra burden may made it even more difficult to actually access some services because there's you know not a qualified provider close by. And if I remember correctly on on the form when the money has been already used up the care giver sensitive foreman answers questions that they have any suggestions or problems that they anchored what are some of the common responses maybe I don't know if Sarah Schmidt would be best to answer that. I know we had this particular grant we haven't gotten those responses back but in general right so within DHS we have a federal lifespan respite grant I just little background on that it comes from the lifespan respite active two thousand six which is designed for any age any disability so it can taken it's available for anyone a child with autism to an adult with Alzheimer's and everything in between we have a voucher program set up for that one as well it with that I think that's the one you're speaking they do have to provide back documentation of service so who provided the care and the dates and times in signing off on that and then we do ask you a couple questions just on the overall Access and ease abilities abilities and even order marcher and ease of using our voucher program in in that kind of thing a lot of what we hear is just a little bit about how our vouchers are designed in those are things that we're looking at for the up coming here for example within the lifespan respite vouchers you can get three hundred dollars every quarter but you have to reapply every quarter so we've heard some of that as far as every three months I had to fill out the paperwork again the other big thing we hear is and I guess this kind of goes into what we were going to talk about is I've got the money now I just can't find anybody to provide the service so what we've been doing is two different activities that kind of compliment the respite vouchers and will compliment this pilot project is one we have started to build an online or with actually built already and online respite worker training it is free home is the success successful to anyone there about ten modules that they'll go through and it gives you just the basic core skills providing respite care and then once you've gone through that training and you will receive a certification we've then also build a respite search locator on that is all online at DHS's website. And on that search locator anyone can access it. Members can filter that by the county they live in by age range of the care recipient and and as a few other criteria and anyone who is on our locator will then pop up for them to get more information and contact information for. that is not an all inclusive list it is only those who reach out to us asking to be on it we've had it for a couple of years but it was only licensed providers because we did not have a way to really Confirm and verify a skill level of just an independent person what we've done now is we have taken that online respite training and if you receive the certification through that training you can then apply to to well submit a request to go on our search locator and so it gives us an idea that you have the basic skills part of what I think we've been discussing to build on top of the pilot project is within the respite training it is just a general corps training and we've had visions of taking that as the base certificate and then potentially adding let's just say badges to it a badge in this specifically for Alzheimer's care how to work with someone with Alzheimer's or dementia and so building those little additional mini trainings to go on top of it so that when an individual request to place themselves on that registry or that search locator they can say about the basic skills training but I'm also trained in Alzheimer's or autism or whatever areas they're looking at. So have background checks been done on those people. So through the the licensed providers yes because that isn't statute that they're required to do so that is something we're looking at right now on the individual workers there's no statute in place for us to run those background checks on the respite program yet it is something that we're looking at what we can do what we're and we've been talking internally at DHS with the adult protective services and child protective services on the two maltreatment registries we can go ahead and run those we've actually just been finalizing the process for that so at the moment there's a disclaimer on the website that that is the liability of the care giver to check those and we're going to start doing the adult child maltreatment checks right away and then hopefully we can get some statute to do the background checks those will come in place at that time so you know anytime a lawmaker here's we need statute is is that if you know any to be great. Well well let's let's work on that because that that sounds like that's low hanging fruit so let's see if we can can work on that and work with our governors liaisons here that might help is on that and make that a point because we'll be talking about our state plan and some goals that we have and that's something that we. I think can help on itself okay anything else on any any other questions. Anything else I want to add one just ahead just one more question I promise this is my last one I can't remember what it was going to ask I'll be darned. I was gonna say let's say you have a care giver and their loved ones in a nursing home so they're just providing care part time. Is are the funds available for somebody or let's say they are a child who lives outside the home and only do it do you have criteria for how much time the care givers bins with with the care recipient I guess is my question. Yeah. Do you the the stipulation on the grant is that the care recipient actually has to live in the home cannot be institutionalized so that's and then of course the awardee has to be the full time caregiver. I have a question yes Jennifer hello. Okay on that note I was just thinking about this how about if. They're in the hospital. And the loved one that has dementia and the hospital cannot handle the situation can the care giver go there and sit with them. Would they pay for that. I've just I've had that situation where it was my dad and he had to go to the hospital. And he didn't know where was this we can't get out of bed and hospital called me and said I needed to get a sitter. I would think that would be responsibility of the hospital to provide that is that not no they don't do it I promise. Adding the persons in their care and if something happens it's there they said if the person gets out of the bed in the fall yeah I think that they would want to provide someone to be there I agree except for there is a statewide or nationwide care. I mean whatever you wanna call it health care worker and so As I understand the grand also go back and read the stipulations they would normally live at home that would be that if if the person normally live yes home I think it would be up to interpretation by case basis because in effect to represent members point if there is a hospital they are institutionalized right even if it's temporary short term stay or node I don't they're not institutionalized they're in an institution that would qualify that's right because it would be at home yeah. So it thank you if the person who is hospitalized yes if they reside at home yes in my situation yes Sir there was that at home then they would possibly qualify African respite care because you are responsible for sitting with him I honestly think it's probably a small percentage of it when I see it happens every now and the end but if they were came from a long term care facility or nursing home via yeah it's the nursing home's responsibilities to see it because it will provide respite because you would have to work scummy and sometime so it yeah I respect for you yes yes because you're not institutionalize you're in a in a short term facility so it has happened from time to time but it's not all the time I just thought I'd throw that out there because it may have been but I have a situation where I had both my parents in the hospital and so the hospital was calling me saying you need to come sit with your dad. Yeah. All these little scenarios very difficult okay I'm. Is that it on respite funding in this. On the head they just tell the final cut to access the the funds you can of course contact Alzheimer's Arkansas we are in the process of having that information about our website as well and I know the agency has it on their website as well but and if in a future date I would request that serica come back and talk specifically about the care giver registry program the development of that and opportunities that which I actually asked her to come talk about that a little bit today so she could do that she's prepared to think. There if you have more you got our attention. All right you're gonna regret that. Never now I I will say when I started with DHS three years ago doing this granite it really pulled at my heart the respite in the opportunities that it allow already and then what it what it can become in this state so it that's why I say it really excites me so you're in for if if I'm going to talk about it But which one did you want me to talk about David. She can wear that okay so part of what we were doing and what we've heard in the state is worn the access to some financial funding to to be able to get that respite so the the vouchers have really helped care givers pay that out of pocket kind of for your reference the federal grant that we have we've had a federal grant for respite since two thousand thirteen how we just received a new one in two thousand. We think two thousand twenty one it's a five year grant that is approximately one point three million dollars total it has a seventy five twenty five split so it's twenty five percent on non federal match that we we do pay thirty H. S. M. but the things that we're working on within the grand we're kind of threefold one providing that financial assistance arms and then the two components to kind of Mary with that of helping increase the work force for respite workers and then helping care givers find that work force so those are the three major goals that we have here in this five year plan and. As we've all seen there is a shortage of healthcare staff we will really go on and looked at this respite training as a way to kind of Use it as a gateway for individuals to maybe forces get their experience through respite care and learned that this may be a way or a career that they want to make long term in home health for a long term care facilities so we will start marketing very soon kind of to that approach and hope that it brings in some some new life when we receive the grant and ever since two thousand and seventeen our two thousand thirteen I'm sorry we have had a partnership with you A. M. S. for the rest program which has been working beautifully and we do want to continue that it is an in person hands on training and it does a lot more than what our online training currently does the online training came about as an opportunity there was a national call four states who were interested in doing this so we submitted our names and were approved how we work with about eight other states in our national partners to build the score on that they were hoping will become a national minimum standards for respite trainings so we started that in November October November of last year building that some of them are very generic where all states can use them there are others such as our our safety procedures Marshall This the safety marshals. That go into more state specific so we talk about state law around and reporting abuse and neglect and other things like that so the learn how how to do those things once it was all put together it went live on January first online to date we have had a lot of people start it but there's I think some burnout which we expected we have had sixteen people complete it to date as of this morning when I checked sixteen people have gone through all ten modules and receive their certification we will be doing a big push hopefully in the next few months to get the word out about the training and and get some buzz going on at. once they get that certification like I said earlier it can then bleed into our we call it several different things are search locator respite registry has many names that we've had for a while and I often joke that it was an internal spreadsheets and I often say it's kind of like the in and out special menu you gotta know what's there to ask for it so caregivers if they knew or if they just randomly asked if we knew of people we could send them the list of what we did is we've taken that Listin internally given that a public face so that people can filter by their counties by age range if they accept Medicaid or grants those sort of things What to you you find an individual on their it gives all the contact information services that they specialize in payments they take hours of operation all of the the normal things and then the care giver can reach out to as I kind of mentioned earlier that part that was lacking was just the individual provider we had a lot of. Licensed agencies on there but if someone was looking just for Susie Q. to come in and help out we had no way of putting her on there so they're the respite training really helped with that and it is something that I've been talking previously with Sheila with UAMS about figuring out a way we can do that for the rest trainees once they've completed that allowing them to get on the registry as well that is up and running now I think that started in November We asked if they can pull some information just from our our website to see what kind of traffic flow we're getting I'm waiting to hear back from that but we're already looking at doing enhancements to that so that they can really kind of create a profile for themselves and kind of market themselves with their special skills or experience that something it's kind of lacking right now. You see what else David and my missing anything. The particular room. I think that's it. Okay for any questions yes Annaly Overton record. This is really more of a a comment I would just like to elaborate a little bit about the restraining that Serra mentioned because the U. S. centers on aging we've been very honored to be a part of the restraining and that is eight seven hour training that we've been offering around the state since thirteen of free to the communities across the state in it it provides for anybody who wants to attend how to provide respite training and that's been free because of the partnership of DHS and the centers on aging and so this training has been going on since thirteen across the state and it is going to continue and so yes we need to continue that conversation on how to get those that have been trained in rest on this registry so that we can get that out into because we're we're going as we actually our biggest class was the delta and so that's been really exciting since we now have the delta up and running they're so hungry they really responded to the class this this past gene so yeah we definitely want to get them on that site so that caregivers can find them. Okay anything else. Yes. No this is about like payment hourly payment is there a suggestion or is that a agreement between the care giver and the respite workers. So right now the way that we have the lifespan respite vouchers it's an agreement between the care giver and the worker we typically suggest at least minimum wage but there are a lot of times when it's maybe a family member or as a friend and it really wouldn't do it for free so a lot of times it's you know let me give you a little something so a lot of times those may not even equal up to the minimum wage but for those that are coming in from outside of the the family or but typically we we suggest that. The suggestion is minimum wage is that okay. But it can be a little bit more yes yeah we we recommend that they at least pay minimum wage have you gotten any applications that are just you know that information back that someone paid him thirty dollars an hour forty dollars an hour I mean it would that would you raise a red flag and say Hey don't do that again or how did how was it hang on no I don't not at the moment we we do receive bad their service delivery logs that does show the amount that they paid per hour I don't know if I've actually dug in to see what the average of that is it would be interesting to look at But. Right now what we're looking at is just whatever whatever you have to pay to get the service to do it we just remind for for the lifespan voucher it's three hundred dollars every quarter so three hundred dollars can only go so far I mean if you're even if you're doing ten dollars an hour you know you're you're not getting a lot so the more you pay the last time you actually get it right. Okay. Okay we'll move on to the next item on the agenda which is discussion of the Alzheimer's disease and dementia Arkansas state plan I'm just going to keep you down there at the end we've got Alzheimer's association down there originally you all did a lot of this work in the beginning you know you you kind of we started these meetings off with already has suggested state plans so help us figure out what we need to do one thought is that this is due to give to our committees by October first so we need to take that old plan and update it and we've kind of talked about looking for maybe some help to sit down a little bit more one on one two or three people maybe with David cook to really do the nitty gritty look at what's written and see if we need to update that more where we can update it. Any any thoughts on that David we've talked if you want to share. Sure so when we did complete the original state plan draft we we did it prior to living in a covert world and so a lot of things have changed and I think some challengers have emerged in our state that we did not recognize in the original draft one of those is of course the elephant in the room just healthcare workforce shortage and so according to the statute in October November there's reporting that's do action of Wimmer deadline to I think for reporting but October first may be the right date I'm sorry about that but yeah October first there's a reporting that's due to the state legislature on the status of the summer state planned and part of that report is the status of the implementation of the state plan and some of the recommendations as they are currently written have already been implemented so one of which was to establish a permanent council which we have and so there are some another piece of the reporting instead to explain to the legislature one of the barriers of implementing the state plan on what what I would what we had spoke about previously is is again S. ribs and member mentioned formulating a group to really sit with those recommendations that we've put out there are four sections to the report one of them deals with public awareness and education about dementia awareness dementia education on the importance or detection and diagnosis well the one of the other areas a second area is a building support for our family care givers and as you can see the dementia caregiver respite grant was not on our radar but something we were able to get across the finish line something we actually want to include in the report that's a good example of of one thing we can improve a third area is dementia education and training for our health care work force that also is expanded to cover you know members along for. For the first research funders APS workers and others just to kind of look at whether dementia training currently isn't statute in what what is needed to make sure that we have a dementia capable workforce and then force is increasing access but also quality of care for individuals with dementia also the four categories that we have it broken down in the original report broken down and and so I I would if we could take a look at the introductory material and what needs to be updated in terms of the facts and figures I think a lot of the infrastructure work is already done and just looking at what areas need to be updated with the weaknesses are in this plan and you know where we would like to go for that would be my recommendation to the committee do we have any committee members who are here who would like to between now and our next meeting which will set in a minute I'm just gonna throw out there we're looking at out August first so between now and then who'd like to have another smaller meeting where you're going word by word over the document crossing out things adding in some things. Sir anybody currently here he would love to do that Jennifer Hallam. Yes okay N. Annaly Overton makori let's add add to their Caroline Barry. N.. Yeah would you like to. Like there is some kind of thing. Yeah well it would you would need to do it well before July thirtieth so but that's the busy time before wedding so anyway I will put you on the committee and if if if that date does not work so Kerry Jordan and then we'll send out a message to everyone who's not here by email and see if we can arrange a date to kind of look over that and I'm sure some of the calls to be done by emails I've asked Brandon to send out that St planned again to email to everybody so that you don't have to if you lost your copy whether it was the hard copy or electronically you'll have it again and of course will take input from anybody who wants to add input but if we could get a group together to really narrow that down so we have the official document to turn into other legislators in October. which leads me to that are potentially having a meeting yeah. What I need thank you need someone from the department health the on the committee to kind of steer the S. if you do nothing Matt Gilmore volunteer. Yeah that would be very helpful. That would be perfect yes AP technically related to that. Well and and I think we do probably need someone from DHS on there so Yeah. We would like to have to you know kind of look at you looking at it from that perspective as well The way it was so we would like to have this report if we can meet the next time on August first here in this room at two thirty in the afternoon again would be our next meeting date. And if you could have that group of document to us so we can look over it and again if anybody has anything they want to add or change we can do that and then have that completed document maybe in September taking official vote that yes this is this is the version we want to move forward with and then move forward with that Anything that you this group just publicly wants to say that but I'd like to see added. And talked about in the state plan before that meeting. K. I. I had someone call me today about an issue and I don't know we don't really I don't know if department of health to get tested all. Not a whole lot of people here at this meeting to ask this question but this is been brought up to me before that there's a forty dollar month allowance for someone. L. which is a. In the end and a nursing home and that it's been that way forever as long as anyone can remember and I don't know how far back that goes I was hoping maybe someone here would know but they were begging me to have that increased so I will ask more questions about that from someone else and see what that budget is and. Matt you wouldn't know any of that that's not. Okay I mean how much money is it and I don't know if it's federal money if it's state money. Does anyone know if it's a match. Whenever he get on your microphone there Caroline so what ever. You know is this whenever you come that they have they received forty dollars so the nursing home kids the check except for forty dollars and I can remember is far as bankers have been like tendency you care for at least seven years so it's been like forty dollars for at least sixty years K. I would say it's been fifteen years. Okay. At least okay that might be something if we get some more information on how that's decided in I don't know if that's a. Federal thing then if it includes if that state by state. It was Chris Wylie's date okay I just got that phone call today and I said well I'll bring it up at this meeting and see if we can help some people out because forty dollars does not go as far today as it did fifteen years ago. So Anything else. Okay well we appreciate those of you who are here today and hopefully we'll have more here in August senator hill did you have anything you wanted to include did you get that established for August. August first two thirty. Forget. Okay then I think we are turned thank you.