Public Health Welfare and Labor Committee - Senate and House
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- October 2, 2026
as you would please standpresentative Fred Allen's going to lead us in prayer
Heymen thank you Representative Allen so with that I need a motion to adopt the minutes from September 1st we got a motion. I got a second all those in favor sayy aye all opposed ayes have it with that members adam C was added to the agenda later this week or earlier this week if we
would we'll go ahead and recognize Andy Davis, Brian Jones and Brandon robertson to talk about the UAMs hospital agreements they've been forming around the state
and while they're getting their way to the table and take care of some housekeeping without objection I'm gonna move item E on the agenda to the end I feel like these rules are going to be pretty much noncontroversial and there's no reason for those agency guys to have to sit around through all the testimonies. so if you guys are OK with that, I'm gonna move E to the very end of the agenda so without objection that is done so you guys are introduce
yourself and you're recognized to present. All right thank you Mr chairman thank you
Senator Matt McKee
Unverified
2:22
committee I'm Andy Davis with the UMs vice chancellor of external affairs. Thank you Mr
Speaker 17
2:28
Chairman. I am Brandon Robinson, chief legal counsel at UMS. thank you Mr Chairman I'm Doctor Brian Jones.
Speaker 18
2:34
I'm vice chancellor for regional campuses and assistant professor of healthal policy and man at UMS. Mr Chairman committee we
Senator Matt McKee
Unverified
2:42
were asked to come and talk about some of the hospital agreements that UMS has announced recently and specifically the agreements that are called we call them comanagement agreements and we've entered into these
agreements with three rural hospitals now one inina, one in Helena and now one in warren at the Bradley County Medical Center there and these co-management agreements are really pretty simple contracts they essentially just formalize a relationship between UAMs and these other hospitals and provide a mechanism for us to be of a service to them and consulting and advising on things from finance to
compliance to revenue cycle clinical operations as well. but they're nonbinding to either party we're not purchasing anything the employees and assets of the local hospitals stay with the local entities they're really just a formal arrangement to kind of formalize a way for us to to work together and I also want to clarify because we have a couple other announcements recently you may have heard about these three are different from the arrangement we have with Jefferson Regional
Medical Center in pine Bluff and the hospital we opened yesterday in Bryant. those are very different arrangements than the comanagement agreements we talked about with Helenamina and Warren. Mr Chairman,
Speaker 15
4:04
we'd be happy to answer any questions and think the first question I've got is walk us through the
difference between Jefferson and Bryant and the other three agreements and what it looks like for Jefferson on a long term basis. you want
to explain those Mr chairman yes the the the agreement with Jefferson
Speaker 17
4:25
is set up differently completely whileuAMS has an ownership interest now and actually wholly owns the entities in JRMC and we just opened up the new hospital in Bryant those are part of UAMS now through various legal ways these management agreements are are just as and he said these are just advisory agreements providing consulting services Chancellor Barnes is it's important to him to try to help
out our rural hospitals and so this these are simply an avenue for us to further our mission and provide help and services to these these rural hospitals so
you must be a lawyer akin to one because you did a really good job of lawyering the hell out of that walk me through the Jefferson agreement. what does it mean now that you say legally or part legally we own part of that or we're running part of that what does that mean long term for Jefferson Hospital? Are
you taking on some of the debt? Are you filling in the cash gaps we all know Jefferson's been losing millions of dollars on an annual basis. How how does this work? Isebic being entered in there off of y'all's system? walk us through completely what it means for Jefferson.
so please don't go back through the legal mumbo jumbo. Tell me straight up what's the difference'm
Speaker 17
5:48
happy to do that chairman. The UAMs is now the sole member of Jefferson Hospital Association which is the entity that owns that so we are
committed to just like our main campus we will be looking at all avenues to improve that since we now own it there the goal is to get them on epic that has no commitment it's been made just yet financially we're working through
that any other questions for committee? Representativeladyman thank you Mr
Representative Jack Ladyman
Unverified
6:20
Chairman. I think this would be for Doctor Jones so you seem to be the regional
person sitting out there so how will this agreement with these three rural hospitals I know the goal is to help them and hopefully help them stay open and that provide better service to the region but how will this do that? I mean I know you're gonna you got resources that they don't have but can you kind of flesh in how how will us do that? that's a great
Speaker 32
6:51
question. I I've been involved pretty heavily with Helena hospital situation and so there are a lot of things that these hospitals
need you know subject matter experts on in regards to maybe their facilities in regards to compliance in regards to budget prioritization all those kinds of things and so instead of paying a consultant to come in and which they don't have to do those kinds of things part of their agreement withuAMS is we provide that support let me give you a real concrete example so the hell in a hospitalspital finance committee met on Tuesday and so I was involved with that we have a subject matter
expert from UAMs who sits in on those finance committee meetings and it's helping them with working through some of their budget and helping them prioritize some of their goals we vetted some vendors for them help vet some vendors for them and then they came to the finance committee for the finance committee of the hospital to approve whatever direction they decide to go in so it's been a very synergistic relationship with the hospital and with UAMS.
Representative Jack Ladyman
Unverified
8:02
do you I think that's a really good point so you're not just providing medical skills you're providing other sources I think that needs to be really made public so that people can can relate to that as to how that's going to help them stay open and I will say too you know we have
Speaker 32
8:20
a teaching mission and so one of the things we've done too for instance in helena we're working on having a PA students rotate through their emergency room. So this is creating a whole new kind of environment for these
rural hospitals and it's also exposing healthcare professionals to rural sites to be trained and once these professionals train in these sites they very well made decide once they complete their program they want to return to Helena orina or warren or one of these other outlying
Speaker 18
8:49
areas sounds like a really good program. Representative Ferguson thank you Mr. Chair. have got
Representative Kenneth B. Ferguson
Unverified
9:05
two questions and Mr. Chair I can't go back into the the queue for my third question. I heard you mention you said something about we owned it. I'm going back to JRMC situation what what do you mean when you say we
Speaker 22
9:22
owned it? so legally it is still like separate private entity but it is we are the board the board it's
Speaker 44
9:28
called a member substitution it's a common I won't go too much into the legalese it's a common legal
Speaker 17
9:36
contracting process in healthcare where an entity becomes becomes the sole owner of a nonprofit so that's the University of Arkansas now is the owner
Representative Kenneth B. Ferguson
Unverified
9:48
of that nonprofit so youuaMs now I was at the formal announcement in pine bluff and correct me if I'm wrong, I understood the structure was going to be a seven member board
four members coming from the current board and3 from UAMs. Was I incorrect in that assumption? No sir that's correct so now are you sayinguaMS will now control that seven member board is that what you're saying? The the board is now controlled by the University of Arkansas
Speaker 44
10:35
theua system it's a it's a part
of the University of Arkansas
Representative Kenneth B. Ferguson
Unverified
10:43
system. So YRMC through a contractual
arrangement with UMs is now controlled by the UAMs system. yes sir OKhird and final question now does that mean that some of the UAMS doctors are going to be practicing medicine in a more comprehensive
fashion at JRMC how does that work?
Speaker 44
11:13
this just became effective yesterday but we are looking at all those options and yes sir eventually there will be a more UAMS physicians at JRMC. OK thank you Mr chair Representative Allen thank you Mr Chair. thank
Representative Fred Allen
Unverified
11:28
you all for being here you mentioned that you all had a ribbon cutting on yesterday ok was that thehar hospital that was that
Representative Fred Allen
Unverified
11:44
heart hospital will not be specialized in cardiology care anymore it's just gonna be like under the umbrella of UMs No sir let me try to
Senator Matt McKee
Unverified
11:53
explain that one because it's different from all the others that we've talked about what happened what occurred in Bryant is strictly a a real estate transaction. we've not purchased anything for heart hospital or heart hospital has not stopped providing any of the services they provide. they quite literally
left that building, moved their resources to other clinics and to their hospital in LittleRock in UMs moved into the building so it's that was really just a real estate transaction where we now lease that building we did not purchase anything from the heart hospital and all and all the services they previously provided they still provide just in their other facility. OK so
Representative Fred Allen
Unverified
12:37
explain to me how a real estate transaction is going to help better serve that community
Senator Matt McKee
Unverified
12:48
the heart hospital ran that facility specialized in what I would say hearts and bariatric surgery. UaM mass is gonna operate that facility like a community hospital can think of it as like a full service ER the other benefit to the community is UMS will be staffing those beds for patients of all types and different things that they may need to be admitted for. does that make sense? So probably a broader range of service
s in the building now than there were
Representative Fred Allen
Unverified
13:22
previously. so what you're saying today is that it's deeper than a real estate transaction because just a second ago you said it was just a real estate transaction. Now it looks like it's
Senator Matt McKee
Unverified
13:35
an operational transaction. Well what I mean is we didn't take over any heart hospital operations the oper as of midnight what last night night before last onoctober 1st all the operations in the buil building becameuaMSs
Representative Fred Allen
Unverified
13:49
so it's more than a transaction, real estate
Speaker 22
13:54
transaction. would you explain that it's youa UMs operations it UMS purchased and
Speaker 44
13:58
purchased the property and leased the building and we are putting a UAMs operated hospital there so UMS owns the hospital now so
Representative Fred Allen
Unverified
14:06
it's not a real estate transactions it's it's about ownership now you own it, right? yes sir in the sense that we
Speaker 44
14:13
have the license for the real estate we're leasing the building but we own the license
Speaker 15
14:21
we are operating the hospital so let me let me explain it this way I think this might be more clear what you
Senator Matt McKee
Unverified
14:29
may what we're kind of used to seeing is an entity moves out of the building there's some period of time goes by and then another entity moves in their operations into that building obviously not wanting the hospital to not be functioning and operating we worked with heartt hospitalspital to manage this transition where the hospital was always open to the public
so there was no period of time where they left the building and we moved in we just transitioned at a point in time midnight on the 2n9th. does that make sense? kind of so we we own the hospital operations but we moved UMS operations into the building we didn't take over heart hospital operations OK Representative Barnes, you recognize
Representative Glenn Barnes
Unverified
15:23
thank you chair like statepresentative Ferguson. I was at that initial meeting also and I'm wondering when did the language change the language at the meeting was that it was a partnership between Jefferson County and you and your miss now I'm hearing ownership. when did that language change? p re s
ent ative Barnes I I wouldn't say it changed the the partnership currently
Speaker 44
15:53
there's4 community members on the board and3 UAMS board members appointed the way that it is set up is to maintain that community involvement in that hospital. so while the the university of Arkansas system is the sole corporate member of that nonprofit the way the board is structured is to is to be
Speaker 71
16:12
a partnership and have local represent ation and local control local partnership local control
Representative Glenn Barnes
Unverified
16:25
but you stated that that you all would make the decisions
Speaker 46
16:30
is that correct? the board will will be making the decisions but certain certain powers are reserved for the sole member under this corporate structure
Representative Dolly Henley
Unverified
16:48
Mrir. I am so excited about what UMS is doing across the state for rural hospitals thank you
very much what I'm most excited about is sharing that expertise in finance physician recruitment and also in telemedicine I think that's just such a a positive for us in rural Arkansas. If I think you've talked about5 total communities, is that right?3 is it3 management and 2 OK. so in those five hospitals that that's wonderful for their those communities but how many other locations or what's the goal for other
hospitals throughout the state to be able to become a part or attached to UAMs thank you
Senator Matt McKee
Unverified
17:37
I could put a number to it. you know, the other parties have to be interested and and they have to you know kind of want to partner with UMs to do this sort of thing UMS under Do. barnes's leadership is definitely trying to explore and grow to this hub and spoke system around the state I don't think we could
put a number to it Do Barnes has said that we're open and willing to talk to other hospitals of course when we do that we have to enter into NDAs and can't disclose a lot of things but definitely I think you will see us continue to try to expand that hub and spoke network around the state. thank you for what you're
Representative Howard M. Beaty, Jr.
Unverified
18:22
doing. appreciate that Representative beatty thank you Mr chairir. I, I just wanted to kind of echo what umpresentative Henley had said with Do Barnes leadership at
UAs we see the progress that we're making in the state the outreach and and the main thing is taking care of our citizens in rural communities where services are somewhat limited and and having that that lifeline so to speak so I guess my question is regardless of who owns it and who's running it do the city in your opinion or the citizens getting a better broader range of services provided at the hospital in in Jefferson County than what they were getting at the facility they had before well that's the goal you know it'll take some time to make
Senator Matt McKee
Unverified
19:01
changes but someone asked earlier about UMs doctors going there and it takes some time to work those things out but that's part of the goal is to try to make access to specialists more local in JRMC in particular and other places yes sir well we appreciate that keep up the good work thank you sir thank you see
Representative Howard M. Beaty, Jr.
Unverified
19:15
no further questions thank you guys for your testimony and thank you for bringing us
up to date on what's going on. Thank you Mr Chairman. thank you committee. uhpson Ferguson you do have one more question
Representative Kenneth B. Ferguson
Unverified
19:32
you're recognized thank you. One final quick question it I don't know whether this has anything to do with JRMC but maybe youMS and I'm a patient at UMS and have had very good experience with UAMS doctors but I'm concerned about every two years it appears that UMS and this may not be an issue for this period of time but it's something that like you guys take a look at it and I want to have some further discussion on
the loss of some of you physicians you guys have lost over the past two or three years I know I lost a cariologist and had to go to another cardiologist which has been great that cardiologist that I now have has really helped me but I've noticed a loss in some of your doctors and I think it may be something that we may need to have further discussion, I don't know if we as a
legislature could help out on that but you guys have lost a lot of good doctors. I don't know if you can address it but I just want to put that out there as to what's happening at UMs from that particular standpoint my my my wife who also is a patient there had a very good physician and and they were there for two years and they went to the VA and and then one left and you know so but
anyway I just want to put that out that's been bothering me for some
Senator Matt McKee
Unverified
21:10
time understands represent Ferguson you you all could probably call another meeting and we could spend a significant amount of time talking about physician recruitment retainment and the challenges of doing that in Arkansas I I would I'm confident in saying it's not just auA me issue it's it's all hospitals in Arkansas and you know we I think sometimes we take it for granted that we're going to have these specialists at UAMs all the time but it is a daily fight to
recruit we're cru recruiting against surrounding states it's really a nationwide issue when you're talking about recruiting a lot of these specialists so unfortunately it happens turnover happens we fight every day to to keep good providers in state and try to train more so that there's a bigger pool to hang on to but yeah it's a it's a big issue we could talk about and we'll probably bring you some things in session that
Representative Kenneth B. Ferguson
Unverified
22:09
and and and and I appreciate appreciate the answers the reason why I say that is I know that you've lost a couple of good cardiologists a good liver doctor kidney doctors and that really really concerns me but anyway thank you for your answer thank you Mr Chair. Representative Allen right thank you one final comment
Representative Fred Allen
Unverified
22:40
first of all, I want you all to know that I think the world of your mess you have one of the best cancer doctors in the world and he left and went to New York City and when you all purchase thehar hospital in JRMC now it's the hard hospital I just want you to say yes or no it's the heart hospital now UMs is JrMC now UMs the the building in Bryant
Senator Matt McKee
Unverified
23:13
Arkansas is UAMs it is UAMS Health that operations in that building are now UAMs Health. I would characterize JRMC as JRMC with UAMs the local leadership at JMC is not going anywhere they're still there they're still running that hospital. so it's but thehar house pill is not still
Representative Fred Allen
Unverified
23:38
running the heart hospital. is that correct? not
Senator Matt McKee
Unverified
23:44
the one in Bryan they have they are still running the hospital in LittleRock yes and they have clinics they have clinics even in Salene County yeah they still have all
Representative Fred Allen
Unverified
23:52
that yeah so the the heart hospital in Bryant is not in UMs if they're not running it y'all on the real estate and you're run hospitals so so you all own the hospital now we we leased the
Senator Matt McKee
Unverified
24:04
building we own the operations is the distinction yeah it's I get confused too in a lot of these meetings they're
talking about who owns what and whatnot. the real estate is leased the operations are UMS owned operations I guess I'll have to accept the
answer. OK. thank you thank you Representative
Allen. I was just gonna say the reason why we cannot recruit specialists into the state of Arkansas is because of reimbursement is so low. period OK? and that's across the board
whether you're talking about medicaid right? Medicare rate or average commercial rate that is the reason why specialists do not come to the state of Arkansas, don't practice here and if they do and they get the runaround and their claims aren't being paid for over a year then that's a problem and so that prevents our citizens in the state of Arkansas from getting care from highly specialized physicians because they can't make a living here
I think that needs to be stated very very clearly and succinctly it's about the reimbursement. it's about how much they can make or not make. and they have to weigh that in their decisions against Arkansas and other states where they have a higher reimbursement across the board where there perhaps is not an income tax. we lose a lot of physicians to Texas and Tennessee because of that one
factor but I think it's more about us not being able to be competitive with the other states and there's a lot of reasons why but you've heard time and time again the medicare rate that elderly people are on it's federal program we are the lowest reimbursed in the entire United States of America below Puerto Rico. Texas is the highest in medicare reimbursement. we are the lowest and we cannot change that and so
the federal delegation could try to change it but you'd have to get everybody to vote against their own state interests to get it changed. it's very very difficult so I just I appreciate the conversation and I just I just want to make sure we're providing really really clear information that everybody in legislators can understand and I don't have a problem saying it because it's just the facts and it's just the reality so I just I know that that's what you, you know, I appreciate what you're doing. I appreciate how you're trying to make it work
you know, giving limited resources and and so really appreciate the the partnerships because I think stabilizing our current healthcare infrastructure is the goal that we should all have. Thank you. see no further
questions you are excused this time no matter what. right thank
Speaker 105
27:07
you chairman thank you committee. so if that guys we'll move
on to item F. you notice item D has been struck from the agenda so with that we'll move on to DHS miss pittman
I believe you have a rule for us to review if you would introduce yourself and your you are ready to
Speaker 109
27:36
proceed. good morning Elizabeth pitman division of medicalical
Speaker 110
27:39
Services. I'm here today with a rule regarding reimbursement for physician's assistants as primary care providers in Arkansas Medicaid this rule implements two pieces of legislation and the first one was actually passed in 2023 when we took it through with Cms in 2024, CmS had some language on the same page it was not language related to the
physician's assistants but it held the rule up and then a new piece of legislation was passed in 2025 and so we combined the 2023 legislation with the 2025 to create this role that you see in front of you today it is in final approval stages with CmS it has gone through public comment. we received one public comment through from the medical society and made some nonsignificant changes to clarify some things in the rule to address their
Representative Aaron Pilkington
Unverified
28:32
Representative pilkington you recognize thank you chairmanordlaw over here this is pittman. thank you very supportive of this role just was curious do we have any inclination from Cms that they're going to approve this role? I imagine they will but I just don't know if there's been any conversation beforehand. Yes sir we've actually had quite
Speaker 110
28:49
a few conversations with Cms this role is very large it touches on every aspect of physician services and primary care services that we have so we've had a lot of conversations with Cms about it we've gone back and forth that's one of the reasons this took so long to get through
it's in what they call clearance which is their final approval stage. so we shouldn't we have been told there are no further questions from any review groups and it is just getting the final clearance fantastic thank you so much thank you no further
questions your rule stands reviewed without objection. you so members we've got4
rules here that require the same people so I'm gonna call on the table let them explain all four rules if you guys would keep notes if you have questions at the end we'll go back to each rule that you
have a question about so with that I'll bring Paula Day, Craig Smith and Charles Thompson to the table and you guys will be recognized to present rule HIj andl. so we'll take a out of order so if you would introduce yourself for the record and you are recognized to present h I j and L on the agenda. Thank you members Charles
Speaker 124
30:12
for department of healthalth and chairman L is a separate rule that does not involve Miss
Speaker 125
30:17
Day if you would like if you would allow us to swatch our we can but I leftg off so it
should beghIj and we'll leavel off for separate. andjay is also a separate subject matter expert as
Speaker 124
30:36
missages has3 OK that's fine thank you sir. The first rule is the rules for conducting criminal history record checks in home health hospice and private care agencies in Arkansas. these proposed amendments are to add provisions allowing third party evaluation services to conduct criminal history background checks and revised applicable language throughout the rules regarding that process as well as remove DHes's dipp squaw certification for private care agencies those
are following Act674 and Act853.ublic comment was open on July5th, closed on august4th and no comments were received. The second role is the rules forrestandingiring centers in Arkansas. these amendments are to allow electronic medical records allow private professional providers to complete billing project review and approval and allow facilities to ban emotional support animals all under Acts 141591 and 819.
those were opened up for public comment at the same time and no comments were received and the third one are the rules for in vitro fertilization in Arkansas these amendments are to implement the changes pursuant to Act859, the Restore Act as well as to align provisions with current practices and utilization of electronic medical records and also had the same public comment period and no comments were received and with that open any questions? let's go to the next
and chairman for efficiency if you would like we can go through all the rules without bringing each subject matter expert up and just if
you have questions they are available. I think that's what I tried to sell you in the first place but if you'll do that and then
Speaker 124
32:47
if we need the soja matter experts we'll grab them as needed understood sir the fourth rule are the rules for Arkansas kidney disease programme in 2025 Act852 changed the preexisting state kidney disease commission into the state kidney disease
advisory co where members are appointed under the board of health and certain programmatic aspects were pulled within the department to make this process a little bit easier and to help our citizens a little bit faster with respect to that public comment opened on July 3 rd and on August6th and no public comments were received. The th are there any questions on that rule? all right
see now please go ahead thank you thank you
Speaker 124
33:37
the fifth rule is the rules for public access to epinephrine these are these changes are to implement Act245 of2025 that expanded types of effrenephrine that is available in our schools. public comment opened on July3 closed on August 2nd and no comments were received. thank you any
questions all right, please proceed Theix
Speaker 124
33:59
one are the rules for breath alcohol ignition interlock devices these proposed amendments are to implement changes pursuant to 841 of2025
regarding requirements for approval of devices and to update to industry standards public comment was open on July12 ended on August 14th. there were a couple of comments that were received. However, most of the comments were either requesting changes regarding language that were copied directly from law or were changes that weren't tied to current proposed amendments and the latter ones we will take under consideration in future promulgations but we're not relevant to these proposed changes
and that the last wa rules pertaining to general sanitation these amendments are to implement Act314 and to clarify a certain plan or review language public comment was opened on July3rd ended on August3rd and no comments were received there. so let's go back to the previous rule and you you made
a comment that you you had some public comment but you were not taking those into effect but wouldd for later promulgation can
you walk me through did those comments have anything
practical that would have changed that rule or what was the reasoning or thought process from the agency to
Speaker 124
35:21
were for existing language they were noted to current proposed amendments and so it is more efficient for us to proceed with the amendments we are proposing now and then to take those into those comments into consideration for the next round of changes percept if there are any changes out of the next session that will allow us to review those
those those comments were not in line with
the current statute. correct perfect. let's let's stay in English terms please sir all right any further questions from the committee? see at 9
without objection rule Gh I J Kl M are all reviewed without objection. thank you members so if that members will move on to item
E which we had moved to the end of the agenda
before we proceed members of the public here's how this is going to work. we've got a number of you guys signed up to speak there was a lot of rude emails sent to staff I can tell you from being the chair of this committee we do not put up with that. I actually called several cell numbers last night on those emails to have conversations personally with y'all not one person answered those cellphone numbers last night
Here's how we're going to proceed. I'm going to recognize David Watson first, Blake Landers in the order they're signed up on this sheet at the minute somebody says something the others have already said we will stop and we will take questions from committee and that will
be the end of the testimony. We will not double here remarks on the waiting list we will hear it for what it is. These emails were very rude and
our staff does not deserve that kind of rude behavior from the public
let's keep it very civil, very much to the point and then we will go from there so with that I'm
gonna recognize the agency for overview. Miss Stone, would you guys introduce y'all yourself for
Stone'm the Now I I just wanted to reemphasize my co-chair's comments and I appreciate his comments. thank you Representative Wardlaw. our staff at the Bureau of Legislative Research. they work
incredibly hard and they're amazing at what they do. the emails that I saw were really really really rude and they were very very inappropriate. we are elected officials we're very public. we run for office and therefore we're public officials so even though it's not good form to yell at us or it's not you don't get your way if you yell at us or call us names or are rude or are demanding that
generally does not welcomed or you won't really be hurt by a member of the legislature if you do that to one of my colleagues. so I just recommend you not do it. you gain a lot more bees with honey than you do with vinegar. something my mom always told me. So I just as we move forward through issues, I think it's just an appropriate thing to say please, if you have things, thank you for the emails that you did send. there were several that were very excellent and great.
I will just give you my two cents' worth. I would prefer not cut and paste if you have something you want to say, I'd rather you say it to me personally and about your story and personal information your pers personal perspective versus a cut and paste email those tend to not be look looked at very well or or re just giving you some advice. Also the rules of this committee are governing who speaks and when
that people speak. So that is determined by the chair of the committee. members can make motions that are either that are recognized some of those motions are debatable some are not so when we give you an answer as to well it depends there's not a gu ar ant ee that you're going to be able to speak or not when you sign up. there's a lot of factors that play into that which are really just the rules of the way this committee is guided by the chairs and the members of the committee so we're just trying to give
information so again I just I want to defend our our staff I think they're amazing at what they do so please you know you can't you could put my name out there that's fine. My phone number I'll give it to you but when it comes to them you know they they work for this legislative branch of the government and they do an amazing job but they're not public and they're not elected officials and they're not public public people. So I would just appreciate moving forward that we recognize that. Thank you Mr
Chair. so you guys are recognized to
introduce yourself and give us an overview of where we're at. Thank you Mr Chair uhjennifer
Speaker 151
40:41
Bris I'm the current director of the division ofvelopmental Disabilityervices with DHS. good morning Paula Stone. I'm the director of the office of substance
Speaker 144
40:50
Abuse and Mental Health at DHS. we appreciate being given the opportunity today to speak a
Speaker 151
41:00
little bit about the recent news and so we're here to update families, providers and partners on some of our near term improvements to the community and employment supports waiver and our longer term path to sustainability. we're grateful for the support of governor Sanders as we work to make supported living services available to families on the CEs waiver waitlist which is a really practical step that can help more Arkansans receive home and communitybased services sooner. we recognize the powerful impact
that waiver services have on families and their stories have moved us and our goal has always been to connect eligible families to services that benefit them as quickly as possible. a brief history about medicaid waivers so in every state, we're running a Medicaid plan under a federally Cms approved state plan that must mandatorily cover certain benefits like inpatient hospital, physician lab etc. states participating in a waiver gives states that just additional
ability to tailor coverage for specific populations beyond the state plan coverage that medicaid requires.1915 see waivers specifically cover home and community based services for people who would otherwise meet an institutional level of care in Arkansas we launched a pilot in'881988 that was approved by Cms to provide alternatives to institutional care serving about75 individuals in 11 counties with case management, supported living and adaptive
equipment. Then in 1990 Arkansas implemented its first 1915c version of the current community and employment supports HCbS waiver statewide with CmS approval and we served around457 individualshrough collaboration with the department of Human Services Arkansas legislators and Cms the number of funded and approved waivers slots grew to over just5,200 by 2020. Then in2022 DdSdHS received funding
and approval from Cms the Centers for Medicaid and Medicare Services to cover 8,233 individuals on our 1915c waiver today our CES waiver currently assists approximately 8000 individuals with a single point in time maximum of 8,233 slots as previously stated which was approved in 2022. these individuals have to have a qualifying diagnosis of cerebral
cerebral palsy sorry epilepsy spina bifida, Down syndrome, autism, intellectual disability or another condition that causes similar impairment in general intellectual functioning or disability. These conditions to qualify for the waiver must also occur before the age of 22 be expected to continue indefinitely and can create substantial functional limitations in 3 of6 major life areas. Individuals are added to the waitlist in order of application
once eligibility for waiver is established. we follow this process to ensure fairness. as of September 8,2026 there were 2464 individuals on the wait list. The current movement from weightless to funded waiver slot is about3 years and 1 month and about 2/3 of the current wait lists are children. Y support a living matters. Children on the wait list today have currently excellent access under Medicaid to 25 out of the
29 core services that are available to individuals also on the CES waiver. we are now working to add supported living for individuals on the wait list.upported living helps individuals with disabilities live at home by providing active treatment that assists individuals in building and maintaining skills needed for daily living activities and helps individuals participate in the community. The most requested service for these individuals under the 1915c waiver is supported
living. today we spend around460.6 million in total on supported living services in the calendar year 2025 and are projecting to spend45.7 million on these services in calendar year 2027. This reflects a recent rate increase and the additional availability for individuals on the waitlist to receive this service. it's also important to note in
many cases under the 1915c waiver family caregivers are able to become employees as CES waiver providers and are able to be paid for the services they provide like supported living to their eligible loved ones Today and we've been tracking this for several months it we estimate to end the current waitlist of around 2500. it would take an additional50 million dollars that's50 million
dollars in additional state general revenue to eliminate the wait list but calling out that would only then move the current wait list into the CES waiver slots people are still continuing to become born and still becoming eligible every day we're continu ing to review applications on a daily basis. We are looking forward to robust conversations with legislators, providers and families and partners as we consider longer term reforms to the CES waiver
expanding supported living is a meaningful near term step and we are committed to sustainable progress that keeps our Kansans supported at home and in their communities. We are working with our team on the waiver renewal that is due in 2027 and we are looking forward to making that even better. expanding supported living adds services families can access sooner even while we work on these long termm improvements with the renewal of the CES waiver. it's also important to note that
we've been running data on those folks on the waitlist today and currently we spend around $95 million on those individuals through those medicaid state plan services. We are currently projecting to spend around $225 million with this added population to the supported living services and other other things and now I'm gonna turn it over to Paula and she's going to share some additional information everyone on the CES waiver is put into a pass and that's our managed care
entities that assist this population. So just want to
Speaker 153
47:54
make sure that everyone understands how this is going to work because we can pass policies we can put money towards things and then it has to be implemented and so how this is going to be implemented is all of these individuals as Jennifer said are in a pale will be in a pass that are on the waiver waitlist and they already have that past service of care coordination
and the care coordinator is assigned. it's a local care coordinator as close to them if they can have and that care coordinator meets with them on a regular basis. They meet with them initially to develop a personcented service plan and that identifies with the family and the member what services are needed and so this is an ongoing step this happens with the past members and those personcented service plans can be updated in any given time so not only
at the regular meetings with them but any time that they meet with them or if there's a change and this is a big change, right? so they they have new services that are now going to be available to them so this is a change. those personcented service plans are individualized they're memberdrin. So at any point in time if there's a change that happens with that individual or just in a regular course of of their lives they can identify things and update their personcented service plans so
that's what's going to happen now is that the passes have already started working with their care coordinators and the care coordinators at their ongoing planning sessions with the families and with the members they ' ll start adding these services or determining if these services are needed or actually will meet needs of people that are members of the past Once those needs are identified then the past care coordinators will work with those waitlist members to identify a service
provider so the pass doesn't provide the services the past pays for those services so they'll look and make sure that those members that have identified supported living as in need gets connected to a appropriate provider in their area. all those providers are Medicaid enrolled providers and they would be then make sure that they determined with that family what services they needed the level of services when they need those services and then that provider would be asking the past for an authorization for
those services. So that's all how that will work there's all those plans are are available and if a family needs something quicker than the typical time frame for a meeting with their care coordinator they can call. so in this case the families can call if they want to get that going now the only other thing I had to cover is the rates setting methodology so Jennifer mentioned that the rates have changed there was a rate that was developed we did a big
work group inoctober and several of the home and community based services rates were amended and changed and we did that there's a a number of different rates setting methodologies that you can use at at the CmS allows and so we did this with a right build up model. and the right build up model is you determine all the costs associated with providing that service and we had a technical group of providers and others that came together stakeholders
and gave information about the cost and what the components were and then other information was used technical work group and then a provider survey was given to any provider who wanted to answer that survey existing medicaid enrolled provider and then that rate was done by building up those component parts we can see a lot of questions yeah we'll we'll take some questions
so what's the right now Did you say what that right was?
Speaker 153
51:58
I did not say the rate 644 for a fifteen-min increment. 6 $4 dollars cents for a 15 minute increment and how many units did
they get of those per day so it depends back to
Speaker 170
52:17
that individualized plan you know it it really depends on the maximum the maximum
Speaker 153
52:23
could be up to 24 hours a day. if somebody doesn't have another service if they have
that extreme need for the service, and meets the description the needs for the description of that service.
OK and how does it work if a family member is the
Allison Guthrie
Unverified
52:46
provider for supportive living So it works very similar to how it works if you don't
Speaker 151
52:51
have a family member it makes it a little bit easier if in finding staffing so the staff like the family member becomes a
paid employee of the waiver provider they go through the same trainings requirements
and all of that ok I just I just wanted to make sure and then when you're talking about the fi0 million in additional state GR that's just the state portion, right?ect OK and then also when you're talking about we currently spend 95 million on them and then that's projected to be 225 million for 2027. Is that the state GR portion as well just so I know what we're
Speaker 151
53:32
I'll have to follow up on that but I believe it's the entire bucket of state and federal but
let me let me make sure and confirm that. yeah because I think because you said in 2025 it was460 million. So I'm I'm assuming the460 million and the745.7 million in 2027 is is that all state general revenue or is that the state federal mix. So
Speaker 151
53:59
the460.6 million that we spent on supported
living alone for 2025. that's the the whole mix. so that is the state and federal it is
and and this is at the 7030 roughly correct that's correct OK I just wanted to make sure we're we're consistent because if we're just talking state general revenue understanding there's a federal component to that that's70 70 % federal and ok so I just want to make sure we're clear about the math so yeah let me know about those other if you don't mind. So in 1988 is when
we started it with a pilot of75 people and now we are at 8,233. that's correct. and and it's 2022. You said in 2022 when we askedcms we received money and where did we receive money from the federal government or from us state general revenue. would definitely like my my boss in
Speaker 151
55:00
supervisor Melissa Weatherton to come up and answer that as she was here when when that good
stuff happened if you don't mind thank you and that was 202 20 then 2022 is when we increased it the additional3,000 that's right when
Speaker 151
55:24
we did to the 1915c waiver that increased the number of slots to 8,233. OK, so so how financially how did we do that?
Does that makes sensed you can you just remind me
Speaker 185
55:39
thank you melissa Weatherton medicaid specialty populations on the first
Speaker 186
55:43
question Sandra Irvin the numbers that she gave me the 95 million currently for waitlist members is total computable total total that's fed and same as the 225 million that were projected to spend in calendar year 27 that's total computable OK. all righty you will remember this because you were at the press conference that was
I just think it's good information as part of the discussion which is why we wanted this to be on the agenda for everybody because I think it's it's a complicated policy knowing that you're never ever going to get rid of a waitlist and so I think it's important for everybody to understand the steps that this legislature took and it was the legislature that drove this initiative back in 2022. and it's a very indepth policy it's obviously very expensive
but I think we just needed to have a refresher about
Speaker 186
56:48
the funding part so back starting in 21 it was announced at a press conference that it was like we picked a point in time if you remember I think it was as of december the firstt who is on the waitlist today we're going to make sure that it's cleared within3 years so
legislation was passed mandating the clearance within a time frame and then that same during that same session this body passed the appropriation and the funding to add to the dms appropriation line so that we could pull the SGR portion to pull the federal match so it ended up we eliminated about3,000 we added3,000 additional slots to cover those individuals that were on the waitlist the day it was announced. and how did we fund it
you passed legislation you passed a bill
and I do not remember the dollar amount what it
was how it but it was state general revenue that we attributed I think it was part of premium taxes correct? we
Speaker 186
58:00
use some premium tax at one point we have we have moved tobacco funds at one point in the future y'all remember that we're funding500 slots through tobacco funding we're using past premium tax too because the law states that half
of the past premium tax must go to supporting people on the CES waiver so we use that funding source to pay the per member per month premiums and then you'll actually added a pretty significant amount of of SGR in2021 before we amended the waiver to add the slots and receive Cms approval in August of 22. thank you and then the
the last thing I would say is I I think my understanding is wen'ren
we're the we're and it's 17 million I think is what the governor announced that would come out of restricted reserve, correct? and then do we
have a projection of how much it would cost ongoing or is that the 95225 number No yes it's all
Speaker 186
59:06
of that so the 17 million of state general revenue was requested to get us through the end of this fiscal year so January through June30th.
so 12 months of supportive living for the weightless population is going to cost us34 million dollars projected in SGR so that's se7 million gets us through at the end of this
ok and so ok so it's34
million so it's another 17 million for the remainder and this is to provide the service that's most requested and and for is it across the board or it's just those that are on the waitlist correct? because those who are
have a waiver slot are receiving it so it's just and only if they meet a medical necessity as determined by their personcented medical plan, correct? OK right so instead of a waiver slot with everything which they're getting 25 out of 2529 services now so it's four services that that they're not getting if they're on the waitlist, correct? yes there's some specialized services
Speaker 186
1:00:18
like environmental modifications that's a service
on the waiver where we could come out and do some modifications to your home. things like that supportive living is one of those services for the waiver clients that's the number one requested service so what we've asked our actuaries to do and we actually just submitted these rates Paula did and her team yesterday so you have to submit rates 90 days in advance to seemSs for actual soundness for managed care. so they went yesterday and
they'll have up to January1st to approve them and that's when they'll go live so the numbers that we're talking about today and the calculations that we have done to add money to allow this service to take place for waitlists are in the rates that Cms now has I got you OK well I just think it's
important to to kind of decipher between the approach and I think it's and I I would love to run the numbers to see
like if we you know providing services outside of a
waiver slot versus providing them just straightforward. I'm I'm curious
as to what that would look like because that's kind of the different approach that we're taking and I I think it's a good policy debate to look at. So I just thank you for the information. turn it back to you
Thank you budget hearings start next week, correct? though with the budgetingering starting next
week is an answer I already know the answer to question or you know this is that34 million being added in to
the biennium budget for Medicaid or DHS when we
Speaker 186
1:02:02
go into the budget hearings in the next few weeks that would be a secretary mann question. I I've not been involved in those conversations we've been focused on the se7 million from restricted reserve. that we
Speaker 202
1:02:13
need to bring before you guys clearly before January that only gets
is June30th correct so you can't yank the service out from under all these folks on July 1st, correct so we need
to know how we're going to pay for it on July 1st. so we need an answer I'll get you one you're welcome p re s
Representative Jack Ladyman
Unverified
1:02:46
ent ative ladyman thank you Mr Chairman well you know the the waiver list when we eliminated that at3000 you know we thought that was the end but it's not3000 more got on the
list and that's gonna continue as this Stone talked about. but let me just say a couple of things before I ask my question OK? I have used all elements of I like to call it continuum of service because my son has been involved in this program since he was5 years old. so he's been on it46 years. do all elements of the waiver and the HDC so all of these are needed
so we need to fund all of those. I agree with that how we found the money is the question but you know we need a seamless continuum of service and I wish somebody would quote me on that because every element of this service needs to work together it it's not one element needs more money than the other because I can say by experience as you go through life from five years old to54 years old, your needs change.
so we need to be able to help that54 or67 year old person that's in the human development center as much as we do that five year old person that maybe just needs a few of these services so I say that because what really bothers me is when we have a waiting list and Jennifer you said this that you know we take them as they sign up and I understand that but is there any way to consider the seriousness of their limitations
you know you may have a four year old that may not be able to make it two or three years to get the service they need to survive. So I think somehow we we need to be able to move serious cases up. I know it's not possible now but could it be possible? So
Speaker 186
1:05:00
er vi ce s on this in all of our 1915 sea waivers these are
not medical services these people that are on this waiver receive all their services through the state plan they go to the specialists they go to doctors they have surgeries they get therapies they get all medical care outside of this waiver. this waiver is a the supportive living service is a high school diploma GEd usually trained person that comes into your home
that helps you learn independent living skills and and monitors and you know this you've you know we know this right but these are not life saving services inside this inside this waiver so that that I think there's some confusion on that and that needs to be clarified so I'm glad this came up. Well I appreciate that
Representative Jack Ladyman
Unverified
1:05:59
clarification but just life needs you know if if you have a three or four year old in
a wheelchair or a walker if they're not monitored most of the time that can be life threatening it's not a medical thing but it's a a livable thing where you need monitoring much more than a normal child would need and that can be a life or death situation as well so so that's really what I'm talking about the seriousness of of their limitations cannot regular life activities be fatal to them and and if it
is is there any way we can try to give that that support so we've been talking understand
Speaker 185
1:06:46
my question do I do but the other side of that coin so we've been talking
Speaker 186
1:06:50
about this a lot because this is a choice we can make when we renew the waiver just to be honest and so if we eliminate the list and say we're gonna we're going to do it different for like it's gone right we've cleared it we're gonna do priority different in the next waiver. we could do that
here's what we keep talking about internally. every single person that qualifies has gone through our psychology and medical team because you have one of those five qualifying diagnoses you have already been deemed that your needs are so severe you're at risk of going into an institution What doctor on our team is going to say no you're more sick your autism is worse right? your family is not as dependable it
Representative Jack Ladyman
Unverified
1:07:45
we should be making I know that decision would be challenging very challenging well thank you for that one more question Mr chairman of mine I'll try to be quick. senator Urvin talked about and you said50 million would clear the waiting list for these other additional services is
Representative Jack Ladyman
Unverified
1:08:03
just assume it's50 million so how much would the federal match be and would that federal match be automatic so if we put50
million into this how much more money would we get coming into the state to provide services for
Speaker 186
1:08:18
our people so it's it's generally we get70% pull down because it's it's direct care service. so70% that's automatic
Speaker 33
1:08:30
money is we don't have to have federal approval we put the money in there no we have to have federal approval so
Speaker 186
1:08:37
in the 1915c waiver they run for ive years and at the end and it's a it's a form
it's a template and you go into it and they ask you how many slots are you gonna find your one of the new waiver. year two and then you show what your rates are and you show the money that it's going to cost that it's going to cost the state and that it's going to cost them that whole waiver goes through a federal approval. So multiple levels of federal approval. It usually takes they want a minimum of 9090 to120 days to look at it that's the implementation but my math says that we would get
Representative Jack Ladyman
Unverified
1:09:18
$150 million from the federal government if we spent50 yeah70%
Speaker 186
1:09:24
but you you have to understand the the yes these are very expensive programs so the numbers we've been throwing out we could use
Representative Jack Ladyman
Unverified
1:09:31
federal funds $150 million so we we need to think about that that's bringing money into
our state for to serve our people and we're only putting in 1/4 of that so I think that's something that
we as this legislature need to consider the impact of that am I correct about that that that roughly yes yes sir ok thank you Representative Bentley. thank you chairman and
Representative Mary Bentley
Unverified
1:10:05
thank you again for having this meeting and kind of clarify some things so just for for clarification, individuals out there that are on the past and have been deemed to be on the waiver list or receiving a lot of care. can we go into that a little bit more some of the care that they're receiving so are
they getting equipment if they need it for a wheelchair for a child needs a wheelchair or for an infant needs some different things can we go over some of the things that those people are able to get at this point without without getting
Speaker 186
1:10:31
the waiver yes ma'am and let me just let me distinguish this let's talk about children so right so if you're a child on medicaid we cannot have any kind of hard limitations that's a federal requirement. so unlike what we have on some of the adult services where we can have a limit an annual limit or a monthly limit we're not allowed
by the federal government to put hard limits on any child service in Medicaid. that's under EPSdT so children on Medicaid not just in the past right but any child on medicaid is has the availability to get any service under the medicaid state plan. so yes wheelchairs equipment, formulas doctor's visits OTpT speech, early intervention day treatment appliedhavial analysis
therapy for autism. orthotics anything that we provide under the state plan they have available. so that's why you hear us using the talking point of they currently get 25 of the29 services that a child on the CES waiver can get because they can under the Medicaid state plan. OK, great. so we're gonna we're gonna give supportive living services now to those that are on the
Representative Mary Bentley
Unverified
1:11:45
waiver list. so tell me the other three
or the other four that are not given to so what
Speaker 186
1:11:54
are those other four pe ci al ized medical supplies so it's an extender it's a state plan extender so there are certain things that are requested for waiver recipients under specialized
Speaker 232
1:12:04
medical supplies that they cannot get under the state plan andrector Bri can give you an example. I'm drawing
Speaker 149
1:12:14
a blank this allows families the opportunity when something specifically may be a brand is
not available for like gloves or incontinence supplies it allows them to get more specialized with that especially if someone has a skin sensitivity or an allergy so
Speaker 151
1:12:32
it's it's dmE but it's like melissa said extended DME. so that's one
Speaker 186
1:12:38
another one isvial modifications and then the other one is doubleub mental support supplemental supports which is not a highly utilized service on our waiver in fact the most we utilize it the most duringOVID
and then it's died back down but that was something that we ramped up then but it's it's not a highly requested service. real quick yeah go ahead you and that's very
Representative Mary Bentley
Unverified
1:13:07
helpful so just real fast, what is the current rate per minute? You said we're gonna we've asked to go to644 per minute. so what is our current because it's gonna be helpful term budgeting if we know what the current rate is that would be helpful. I've just been
Speaker 186
1:13:18
asked about the new rates so many times that's the only one that's coming to my mind but let me get it for you.
right this that's helpful thank you very much
thank you chairman uhpresentative Ennett recognizecognise question thank you chairwoman. I have
Representative Denise Jones Ennett
Unverified
1:13:32
a couple of questions and forgive me if if it's going to be redundant you might have already addressed this but I'm ask anyway act 10:23 requiresdHS to conduct full rate review according to a published schedule what is that schedule? that rate review that's what Miss Stone was talking about in
Speaker 186
1:13:56
her opening that was a piece of legislation that passed last session that mandated that we review past specific rates so all the rates in the 1915 the CES waiver and then all of the behavioral health services that are in another federal program under the past that's already been done we worked like Miss Stone said these ladies and and I was there as well. we worked with providers in our actuaries the rate report
has been published since October of last year. it's on our website and the new rates go live January1st. they are included in the rates that were sent to
Representative Denise Jones Ennett
Unverified
1:14:40
Cms yesterday. so what is it yearly the schedule? no ma'am they all
Speaker 185
1:14:47
of the rates were looked at and adjusted some went down, some
Speaker 186
1:14:52
went up.upportive living went up pretty substantially and that
rate is set and it'll stay that way until we review it again. that bill did not mandate a rate review schedule
Representative Denise Jones Ennett
Unverified
1:15:08
how often will CS waiver in supportive living rights be reviewed and we're OKok you already said we'res published OK never mind. I have a follow up chairwoman if you ok go ahead let's see the last study showed rates have fallen 23% behind actual costs because they went unreviewed for years
with DHS support putting a set review cycle in statute no ma'am. OK and why is that then we would need to
Speaker 232
1:15:40
do that for every single one of our medicaid providers I mean if you want
to pass a bill that does that for every single Medicaid rate provider. I mean you have hospitals that haven't had a rate increase in what
19 years? I mean we want to start talking about that we can talk about that OK one more question please
Representative Denise Jones Ennett
Unverified
1:16:02
let's see Arkansas has previously used past provider tax revenue to open additional waiver slots with share of curr CES funding comes from general revenue, the medicaidrust fund provider tax revenue in federal match and I think you already touched on that but I didn't hear anything about the medicaid trust fund So I can I can get back down and
Speaker 186
1:16:28
get a breakdown so the medicaid trust fund is not designated
it's it supports medicaid programs across the whole, right? I mean on all of our programs so I'd have to go back and tell you where we're pulling the funds to pay the pm pms the perm per month payments to the four managed care companies um, each month but yes, I'm assuming some of it does come out of the trust fund this is a it's a a 1. $2 billion program the passes and one more question
member of the general assembly you can ask your fiscal division at theblR to pull that information for you at any time.
Representative Denise Jones Ennett
Unverified
1:17:14
Go ahead. OK. Is any of the revenue at risk under the federal changes to provider tax in the one big beautiful bill act and if so how many slots depend on it? the
Speaker 186
1:17:29
provider taxes that are discussed in the big beautiful bill do not
pertain or or affect the past program whatsoever thank you thank you RepresentativeRose oh Representative rose you're recognized thank
Representative Ryan A. Rose
Unverified
1:17:49
you thank you for joining our committee today
and walking us through a lot of these details. first thing I wanted to say is I certainly wanted to echo Chairman Wardlaw's request on the budgetary information of what's this look like for the budget
hearings that begin early next week. I would really like to be able to get that information. I don't know if that's even possible for somebody on your team to send them text to somebody on your team to see if before we walk out of here today if you guys can specifically address if we're going to see this reflected in your budget proposals for the future year that we're gonna be you know making these budget decisions on I also had a couple of questions pertaining specifically to some processes on the current wait
list so I know that there is is a pretty intensive process
application you guys have to I'm certain weed through applications information things that aren't completed things that get lost I've heard numerous stories of how difficult that is from a family's perspective close to a family that went through this
took you know a substantial amount of time as we're looking at the number I think it's you know 88233 or so that are currently on the waiver 2464 who are on the waitlist with all of those families I'm I'm certain that there are others who are currently in application to get on can you talk about the ability that we may have to improve this process
Speaker 186
1:19:40
wait a minute'm going to ask Jennifer because she has been working with the DdS team on multiple fronts because there's definitely room for improvement on the application process and we do admit that things are often lost. We get that complaint a lot. so we're doing a lot of efforts at DdS to try to do more electronic systems to track this so I'm gonna let her talk about that yeah I
Speaker 262
1:20:07
appreciate the question and we're multiple fronts so we're looking for opportunities
Speaker 151
1:20:12
in the waiver renewal to make that process better for families and less cumbersome as well as implementing several IT solutions like Miss Weatherton was talking about that'll make it more electronic and having a portal so that documentation isn't perhaps lost in email or snail mail so that we have a repository a database where all of that information's going to in one place and we're also working on several communications so making communication better upfront
with families that have applied for the waitlist and when they achieve getting eligibility, more memberfriendly and just better information to help families navigate what what can be a very complex system and I'll say across the board something that
Speaker 252
1:20:59
I think is going to really improve our customer service at the department
Speaker 186
1:21:04
is it'll be coming before you guys in October ALc we are putting out a customer service center contract that contract will be
before you not only is this going to improve DdS but the goal of this contract is for eventually the Medicaid beneficiaries to have a one stop shop, one phone number one way they can chat, have an app on their phone, try to move into more technology where they will receive accurate information part of what we ask this contractor to do is kind of infilstrate our office, start doing script building, start learning our policies start learning what we're telling people so you're so people can
stop being bounced across our department because we know that is happening and so that contract's a huge contract they're also gonna do outbound verification for our community engagement and work requirements that are going to start in January it's a huge contract it'll be coming to you guys that week next week actually so on that No offense at all when
I ask this but 10 years ago
or so, maybe 8, we started a division over there calledippsqua.
Speaker 232
1:22:24
come on now let's be honest with each other because I've been asking for that for 10 years provider soippsqui provider it's in the name provider relations. So what I'm doing with the customer service center is beneficiary relations were you in here
Speaker 269
1:22:35
when I talked to theuaMS people earlier I was yeah and you are
a lawyer we all know that about you so don't try to outlaw youruro please Representative Long that was
Representative Ryan A. Rose
Unverified
1:22:50
I could be permitted to continue thank you I appreciate your questions though so I'm kind of on a on a path here because I was shocked when hearing from talking with and
listening to families I was shocked the amount of like handwritten paperwork that had to be submitted and you know I've in in business I've had to submit paperwork and you send this certified mail you want to make sure it's not lost and so
this is shocking to me that we don't have a portal at this time and it's not towards any individual at this time that was just shocking to me something of this magnitude was just being handled in terms of paperwork sitting on somebody's desk. do you know how many pages are require d for a family to apply to get on the the waitlist I know
Allison Guthrie
Unverified
1:23:41
it's a lot and part of that is you know this is a very well very needed service to be on the waiver. it's very
critical too that we have the best information possible to make sure we're only approving those who truly are of the highest need of and like we said earlier, potential need for an institutional level of care and so it's just it's very important and I know it's cumbersome that we
Speaker 151
1:24:05
have accurate records and documentation and as s es s ment s and really fully understand the picture of what an individual's going through to make that determination because once you're determined eligible
Allison Guthrie
Unverified
1:24:20
this it's very rare that we say someone is no longer eligible for this service. sure
Representative Ryan A. Rose
Unverified
1:24:25
and and I appreciate that and and I'm not necessarily advocating for a less rigorous process I had some this is for the benefit of all of us on this committee. I had some understanding through some family friends who went through the process of applying but it's really been in the last six months that I've become a little more educated on this process when you say it's it's a lot of paperwork. do you mean 10 pages?
Allison Guthrie
Unverified
1:24:52
think it varies. We have forms that you report on called area of
Speaker 151
1:24:57
needs which is several pages long where you're documenting really your functional impairments and how your disabilities's affecting your everyday life, but then we also request testing. testing alone can be many, many pages depending on the level of IQ adaptive functioning. I mean all the things we're also looking at if you're school age, your school records so your IP that documentation,
Speaker 149
1:25:24
documentation from your perhaps physician. there are a lot of things that we're asking so
Representative Ryan A. Rose
Unverified
1:25:29
significantly more I mean we could be getting into the realm of 100 pages or more for an application for a family potentially yes so
you mentioned that you're working towards a portal how how soon would that portal be active? We're hoping to bring on the
Speaker 262
1:25:44
most the biggest piece of it in December and then adding enhancements to it throughout2027. right and I'll wrapping up. Are
Representative Ryan A. Rose
Unverified
1:25:54
there currently and I understand and for those who may not and and you could correct me if I'm wrong, I understand vacancies on the waiver only occur if an individual who's on the waiver either leaves the state or is deceased. is that correct or goes
Speaker 262
1:26:09
to skilled nursing facility or an ICF so a lot of those individuals especially as they go a transition of of what
Representative Ryan A. Rose
Unverified
1:26:16
services they're receiving do we have any current vacancies on on the on the on the waiver I'm sure we dopresentative rose like that
Allison Guthrie
Unverified
1:26:25
changes on a day to day basis. just tracking a loan where averaging around 150 individuals a year that leave for one of those reasons. Are there also
Representative Ryan A. Rose
Unverified
1:26:36
slots that are held vacant iss this for the children that may be in foster care that that
Allison Guthrie
Unverified
1:26:43
is also accurate. We hold a number of slots for what we currently
Speaker 151
1:26:47
have approved in our Cms waiver for a priority which is children in DCfS custody adults in APs custody
Allison Guthrie
Unverified
1:26:56
and individuals wishing to transition out of an institution like an intermediate care facility. and I'll be true to
Representative Ryan A. Rose
Unverified
1:27:02
my point that I was wrapping up my questions. do you know offhand the actively on the
waitlist the longest that somebody is currently been in waiting3 years and 1 month. OK, so37 months that they've been in waiting and if I understand it correctly is this first come first serve or is there some type of triage based on high acuity low acuity
Allison Guthrie
Unverified
1:27:27
it is based on order of application and the date you're found eligible for the services. OK
Representative Ryan A. Rose
Unverified
1:27:33
right I'll I'll hop out for now thank you
Speaker 287
1:27:37
for the latitude. Representative Long thank you Mr Chairman umm in my first term on this this committee so I'm just
Representative Wayne Long
Unverified
1:27:43
trying to catch up here what what were the four thing or four categories you mentioned that the waiver is for you know because like you said everything else is provided so the excuse me not have to waiver the waiting list what
what was this four categories again and and if for us new people if you wouldn't mind give us two or three examples of what each of
Allison Guthrie
Unverified
1:28:11
definitely the most requested and number one service that is utilized under the waiver and that is to have staff provider agencies provide staff to your loved one in their home and community it helped with the activities of daily living helps them learn how to budget, cook.
its goal is really to help create greater independence but also there's a you know there's a safety component too so you're having someone making sure you know you don't leave the stove on and you know, perhaps start a fire or you may need assistance
Speaker 151
1:28:47
with toileting. so they're a wide variety of things that supported living can really help support someone with the other services provide additional supports. So, um, like home modifications sayy you need
because of your disability a shower bar or
Allison Guthrie
Unverified
1:29:04
a specific toileting equipment or you need the doorway widened even to get your wheelchair through the door and so there is a it's a very specific service that allows these families and provide r s to work together to do three bids. they come back with and there's there's a lot of rules and processes in place around that but it allows families to then get those home modifications that are needed to
Speaker 151
1:29:32
help them live more independent and in their homes and communities and then one of the other ones that's really utilized is the specialized medical equipment and again that was what I was saying about the DME extender so the durable medical equipment that would not be exactly available
Allison Guthrie
Unverified
1:29:51
on under the current state plan it allows them to get specialized wipes or some over the counter medications in some instances incontinence supplies gloves, things again related specifically to that
person's very personcented specific disability. OK I was
Representative Wayne Long
Unverified
1:30:08
trying trying to keep up with her is that is that three that
Speaker 151
1:30:13
you just named off another service is a supplemental supports like Miss Weatherton was saying and that's as a an adneeded basis for adults there is a transition service
Allison Guthrie
Unverified
1:30:24
so when you're transitioning to your own apartment or a house we're able to provide you with some like like say you need a washing
machine or you need to pay your security deposit it's not for room and board and it's not an a reoccurring expense but we are able to support adults moving into their own homes and some one time payment
Representative Wayne Long
Unverified
1:30:47
situations and on average what would be the savings to the state by doing this program and keeping people in their home versus if they had to be institutionalized
Speaker 151
1:30:56
so that is part of the Cms waiver and approval process we have to show cost neutrality that providing home and communitybased services is a cost savings to
institutionalizing individuals. and so as long as it's neutral you're
Representative Wayne Long
Unverified
1:31:08
ok OK thank you very much appreciate it you're welcome Representative Grammridge thank you very
Speaker 294
1:31:15
much Mr Chairman very convoluted there's a lot of stuff going on but like
Speaker 296
1:31:21
you know I met with some of the some providers and it's kind of with Representative Long's saying but it seems to me that if we can get these children's services this will happen for every child but you can get these children's
services you can take them from going to be institutionalized and having 1 to 1 care and like really really expensive to giving them the supports and the stuff that they need so that you can start doing the supportive living and so instead of one person watching one person you have one person helping out4 people and so you get we're able to help more people at the same price and so I think I think that's the way to go with this and if we don't get these people on waivers and start getting them services that we need to and
it's just just costing more to the state and to the taxpayer and then and then too like you know I get worried too it's like if we don't what happens to these people are these people who have just severe levels of autism they stand up on the streets or I mean there's some of that stuff and I see a big homeless population issue and my area right now and so and I just see this as a big piece to some of the larger problems we have and we got to move in this not just for families but for our communities so I'm supportive of finding the way to end this and finding the money but
also like there's a provider issue we don't have enough providers even if we emptied it now like we don't have the providers to do all this work yet do we so how is there
Speaker 252
1:32:49
plans for that or so think it's a distinction we have a very good provider network in this space.
Speaker 186
1:32:55
it's the it's the direct care worker that works for the provider so I like to make that distinction cause the providers like me to make that distinction. they do a good job that's it's that it's that frontle worker and again you know
that rate increase will go into effect January1 for this service. so we do feel like that will be helpful thank you very
Speaker 81
1:33:19
much Representative Richardmond Richardson thank you Mr Chair. thank you guys
Representative R. Scott Richardson
Unverified
1:33:25
for being here and trying to walk my way through all of this but I got some
que my questions for you I think are are rather simple. So past system has been in existence since 17, right? we're about 10 years into this and what I'm hearing you say just a minute ago is that there is
you guys are working on some IT systems, some marketing material or making communication better some cumbersome paperwork. has this been from day one have we had these same challenges since day once since starting this in 2017,2018. the past we went full managed
Speaker 186
1:33:59
care in 219. this really is my tied to the past. This is tied to the division and how we're doing the waitlist and you have to one of the things that I
keep reminding myself was we didn't have a wait list so what's happened is is that we missed a window to put in critical IT infrastructure in place when we cleared it because we were only getting about450 people sign ing up a year and that was manageable. that was manageable to keep up with.2400 people on a waitlist that's not being captured in a pretty sophisticated system in tracking applications and
paperwork is not manageable. so I think it just got away from us it got away from
Representative R. Scott Richardson
Unverified
1:34:50
you. OK, I'll leave it at that thank you what caused
that influx of people to sign up on the waiting list where it went from400 people a year to where you are now walk us through how that took place and where that came from so that's our
and since 2022 we've piled up to where we are now ok well that makes sense. p re s
Representative Denise Jones Ennett
Unverified
1:35:22
ent ative Bennett thank you Mr Chairman. I have another question I don't know if you can answer this somebody just mentioned about the rate increase in January when that takes effect how much of
Speaker 250
1:35:33
the increase would go to the worker wages So when when we set
Speaker 186
1:35:40
Medicaid rates we set we set a rate for a service
so we are setting a rate increase for the service of supportive living. so there's no correlation we have no control over the correlation between what an employee an employer pays their employee. They bill us for the service that being said, these providers are very aware that they need to be able to pay people more to recruit. I cannot imagine one singledd provider that we work with that is not
going to put this funding towards their workforce thank you Representative rose you
Representative Ryan A. Rose
Unverified
1:36:31
recognize. Thanks chairman. I want to make sure I remember hearing you correctly somebodybody mentioned the number
I think a couple of times 150 is that about how many am I remembering that correctly that's how many rotate in or out roughly on the waiver annually
Speaker 262
1:36:52
that's correct sir on the people that fall into one of those move out of state nursing homes
Representative Ryan A. Rose
Unverified
1:36:58
roughly 150 slots will open and roughly be filled each year that's the waiver itself. Now I imagine on some level the waitlist itself also may have some people transition off for similar reasons is that correct? It could yes sir so I was just thinking
you you earlier told me that I think it was37 months that an individual was the longest active on the waitlist if we've got was it 20 4 46 or so that are on the waitlist and if we're transitioning 150 in if you just get on the waitlist today you're looking at over 16 years waiting to go from the waitlist to the waiver is that correct? based on the numbers we just discussed math is not my strong suit but
Speaker 151
1:37:54
potentially yes assuming my math is correct and the so we're tracking not yet the average wait time but who's at the top of the waitlist and so today at the top of the waitlist it is3 years and 1 month since they became
Representative Ryan A. Rose
Unverified
1:38:09
eligible not wanting to to track the the wait time at present and I get you didn't have a waitlist and now you do but I mean if you're if you're saying with pretty strong confidence your you're rotating in about 150 a year with the current cap on the waiver
to get the last person who was just added to the waitlist at 150 new people on every year that's about a 16.5 year wait and so I just think we need to
you I just want to make sure that we're clear just in response to your questions no they there was a whitelist. I mean and so we took action in 2022. we were able to find the funding to do that and so we did at that
time but you never do clear it like at that time we we were able to take care of those those folks but it was not an immediate. it was a three year plan because the funding because of you know the funding to be frank with you. so it took3 years to get those folks but yeah so even if even though we passed the legislation to do that it still took a three year time frame for those people. So I'm not sure if they had been how long they have been waiting because the last time you know
it went from I guess just according to the testimony75 people in 19,881,990 it was457 and then 2020 we were already at5,200 and then that we just continued to add but then added another3000 in2022, but it took three year plan to do that so think just want to make sure we're clear about that. thank you.
Representative Jeremy Wooldridge
Unverified
1:40:02
Representative Wwoolridge thank you Mr Chair and I I think my questions may be a follow up to what Senator Irvin was discussing so you've identified what the biggest expenditures are and we talked about what it would cost to get to a zero wait list and I know you had mentioned earlier you have projections of what that would look like to continue just to keep a cleared list so are those projections based on a growth per year? what what would that projection be is that something you can share with us of what you think it would be or
what the commitment of this body would be to keep that as a cleared waiting
Speaker 186
1:40:39
list these are rough projections only thing we have to go off of is because when we did clear the list in 22 and and we did we added those slots and watched on average how long it has taken to get back up to this spot right so about well we stopped in 21 it's been five years this December will have
been5 years since the since those people were kind of frozen on the list and we said this is the list that gets cleared in 22. So if you just think about we have about 2500 people that have built up over the last ive years and those are the projections that we're going off of to try to figure out how much we would need in addition if we were able to clear the list today what we would need on an annual basis the
increase for people that would come on and apply and the 150 people a year that leave and how that would be offset. so so what is that number I will get
Representative Jeremy Wooldridge
Unverified
1:41:48
you that number because I guess what I'm trying to wrap my head around and and defense of you all you can only do what we allot you to do financially so if we choose to wait and clear the list every three years or5 years you know whether that's a good practice or not it's debatable amongst the body but you have to work
within the confines of of the expenditure that you're given. So I guess I'm wanting to know what would be an annual growth projection that we would need to look at every year to say that we don't want there to be a waiting list moving forward it's not only will we try to clear this waiting list but we want to be forward thinking and plan to make sure that the waitlist doesn't back stack again. so thank you for that. thank you Mr chair. Representative ladyman thank you Mr. Chairman
Representative Jack Ladyman
Unverified
1:42:36
Well folks we're asking them questions they can't answer you don't know how many people are going to be getting on that list nobodybody knows that but I I know one of the reasons for that is that when you look at the people on this list and the people in this program that's a very small percentage of our population there are people out there who need to be on that list that aren't on there for a number of reasons.umber one, they may not know about the program. There are people that don't know about this program
that need this program you know I've taken my son to places and people have asked me about it and then I find out they have a daughter that needs this service they have no clue so the more publicity out there the more you're folks just don't fool ourself this list is never gonna be zero it is gonna grow. now hopefully we can slow it down but we get more population we get more babies born, you know these ailments are going to
be with us forever so you you can't unless you've got a crystal ball somewhere hidden and you you can't talk about how much that list is gonna grow you have no idea because there's too many parameters that we don't know about so it's gonna grow but when we cleared that list of those3,000 people I talked to people that have been on that list for 10 years. and that's one reason we took
the action that we did because the people further down the list 101el years they'd been on there some of them passed away they did so Representative Wooldridge makes a good point there is we've got to figure out how we take care of the growth but we don't know what that is maybe we'll be able
to see that better when the list clears it wasn't really a question do you agree? Yes sir
I think they find it hard to agree or disagree. so we all understand
the positions so if that member see no further questions for the agency, I want to thank you guys that's not been an easy place to sit today appreciate it and we'll move on to testimony from the public
yes senator irvin will say something as y'all leave
and I just again want to echo thank you to our our agency folks really really appreciate the very thorough discussion because
this is the appropriate place to have it in public health committee meeting because budget hearings are starting and so really really good thank y'all so much. good clear information and we look forward to the follow up from members questions on the financial parameters thanks with that we'll move on to David Watson Everybody understands the rules
no reason to repeat them right? good
If you would, Mister Watson, please state your name who you represent and then you are recognized to give your testimony. you have to hit that button turn it
David Watson
Unverified
1:46:09
green perfect thanks never done this before so I'm a newbie at this yes thank you for allowing me to speak my name's David Watson. I'm a retired business owner but
I'm not here because I owned a business I'm a citizen who my wife and I over the years have had over40 children in our home as foster parents. we adopted two children out of foster care one of our daughters Mariah has an intellectual disability she is doing remarkably well for her situation
recently she finished a two year program at Arkansas State How programme for young adults with intellectual disability about two weeks ago she was able to start employment as a teacher assistant atcc access school and like many young adults in her situation she wants meaningful work
which she is now hasri greater in independence and eventually a place to live outside her parents' home she's currently in the process of becoming or in the application process for Easterill's roommate housing however, Mariah's is on the CES waiver waitlist. she entered that list on February5,2004.
that's two years and eight months that she's been on the list they're over as already been recognized or stated by several people here today and I want to thank Jennifer Melissa. they've been very helpful as I've done some extensive research and their numbers concur with with what I have been able to gather as well
so I don't want to repeat a lot of the testimony that's already been presented very well but Mariah is one of those 2464 people who are on the waitlist but she's not a
David Watson
Unverified
1:49:06
of a child a young adult who needs the services that she can't get unless she's off the waitlist and has CEs waiver services provided one thing I do want to change from the test the written testimony and documentation that I'd sent in I was estimating about 10 people a month leaving 120 people leaving the waitlist and
going on to service per year. However, that was clarified that it's about 150 year or 1el.5. so I had a number of 20 years not 16.4 years that if the person who's last on the list will take if we don't make any changes
David Watson
Unverified
1:50:10
number of the number of slots available from about5000 or4,763 slots in 2019 to8233 slots today and yet we have a waitlist that has increased and the math that I put on the wrote down as the the testimony before me stated about 150 people
leave a year and get onto onto the CEs services and about500 are added so we're we're having a net increase per year of an average of350 people. So that unless we
Speaker 329
1:50:54
make changes and how we go about things we will have a perpetual growing whitelist and and
David Watson
Unverified
1:51:02
people will wait even longer than 16.4 years so the question is not how many slots
has Arkansas added it's how do we build a system in which eligible disabled Arkansans can actually receive services how do we prevent another large waitlis firm rebuilding Our research, my research has pointed to three things that have already been addressed but I'll just recap them without going through all the numbers you can review my numbers in the packet that I sent toervo with you on the committee
first of all we need to expand address existing weight existing eligible waiting population with a measurable plan for adding the capacity needed to serve them my my research concurs with what was already presented $173 million is needed to eliminate the waitlist of which the federal government would provide approximately30% or70% in the state would be
responsible for30% which is my numbers show53 million so we're we're very close in the number that was already presented a50 million. Secondly, we need to build the provider and direct support workforce necessary to authorize to turn authorized capacity into actual services and my dialogue with several of the agencies or or service providers they're competing against the
Speaker 329
1:52:48
Mcdonald's, thewalmarts of the world through our pain 2 to34 dollars more per hour for direct er for this type of workers that we would need yes it's a very sensitive matter and and I hate to stop you but
I'm gonna stop you for a second. OK. the service you mentioned your daughter needed. If I was listening correctly and melissa, I'm need you to pay attention here The service you're asking for your daughter that she needs and
she's on this waiting list is going to be
corrected in January with them allowing this the supportive living service to be on the waiting list this testimony
we're hearing today, if you read the agenda is based on the service that the
governor has now initiated through people that are on the waiting list it's not necessarily about the slots on the waiting list. Now we let the members ask questions to the agency so they can understand the budgeting process on the slots but today's meeting is basically about where the new
service is and how that new service is is applied to the people on the waiting list
David Watson
Unverified
1:53:58
does that make sense? Yes and and let me just kind of res respond to your statement or question I I'm aware of the $17 million announcement what I haven't been able to discern or figure out is was at 17 million only Arkansas's portion
Speaker 325
1:54:21
or was that ok that's easy it is ok thanks for the clarification
David Watson
Unverified
1:54:29
cause I I didn't know that total ok because I haven't I've tried to get the information. I've asked, well
Speaker 325
1:54:34
how does that practically work for our daughter specifically and I I don't have that knowledge. I haven't it helps by she's
now eligible for the Easters living at January this where Melissa needs to pay attention because I need a head nod but
Speaker 325
1:54:51
yeah I called I talked to several peopleenator dotson's causing
us problems at the moment
David Watson
Unverified
1:54:57
but go ahead well I talked directly to Easter seals roommate housing within the last two weeks since the announcement thinking oh great my daughter will be eligible and they said nothing is filtered to us exactly how that money would be implemented and until we get official notice your daughter has to be on the CEs waiver for us to give
for her to be able to be
David Watson
Unverified
1:55:27
January1st I understand. So good news I'm so thankful that she will be eligible January 1 but I want to make that clear
on the testimony today from the public that's what we're here to talk about today the new service that is eligible to the folks on the waiting list. we're not talking about the slots at this point that conversation will happen but today it's about the service
just being applied to the folks on the waiting list
David Watson
Unverified
1:55:59
will be very beneficial to my daughter and others like her that need supporting supportive living services so I I'm I applaud governor Sanders announcement and efforts to make that happen. I've acknowledged that to her both in in various forms and so I'm I'm I'm thankful that there's been a very positive step forward and and and and and in no way
want to imply that she's not making good effort to help alleviate the issue at hand I think the the other question or other thing that's already been addressed is how do we maintain a system in which we don't have perpetual growing problem but that we address these things so families aren't waiting for for months or or years or decades and so
that I think is the other issue so while my daughter Mariah will be a direct beneficiary of the new $17 million or5 $8 million announcement come January 1, there are at least 2463 other people that may or may not be beneficiaries of that that funding that's now been made available so I'm not here just for my daughter I represent
a whole host of people who have waited a long
David Watson
Unverified
1:57:40
really my testimony. I I wanted to bring it's easy to talk about numbers and money in a real a theoretical way but I'm here as a
David Watson
Unverified
1:58:04
has needs and I think we as as fellow human beings and citizens need to do everything we can to help provide for the most vulnerable of those who live among us including my daughter Maria and I I I thank you for allowing me to speak I've I've never done this before so I'm new at it. so if I hopefully didn't step out of the out of the lane too much but I I
appreciate you guys allowing me to be here today and and and and provide testimony and I've got lots of documentation you got questions but I think most of the answers have already been to been answered by Melissa and Jennifer and and so anyway thank you I just want to tell you you made it look easy. a lot of people show up here
and it is a very intimidating process and a very intimidating place to sit and you made it look easy. so for the first time Mariah can be very proud of her dad. He did a good job.
So with that see no questions I thank you and as you and your other members of the public have handouts you can catch members when the committee's over and hand that to committee members as you see fit but thank you for your testimony and your excuse so blake Landers
Again Mister Landers don't want to repeat the rules but let's try not to
repeat anything that's been said keep it on the service not on the waiver slots and you are recognized to introduce yourself to
Speaker 337
1:59:59
and foremost I wanna thank the chair and and and Miss Irvin thank you very much in the senate for listening to us. you know I know you guys are
very busy and and we don't wanna I pers personally don't want to take up too much of your time today because there's there's there's so many things that you know we could talk about with the CES waiver and and and thank you guys so much for asking some of the questions is some of the same questions I had coming in today and thank you to Jennifer and thank you to Melissa for your diligence here and also answering the questions in a a very easy way to understand because I know that that was
probably some of the some some of the issues I think that me and some of the other parents are having but my daughter Charlielandnders, she's a four years old. We had her in umoctober of2022. she has a severe developmental disorder a rare genetic condition calledcTNNB1 we've been navigating the unknown for about two years and you know it hadn't been the
easiest however you know we just kind of put our faith in in in thelord and and we pray every day and and you know we work as hard as we can so I just want to thank you guys for listening to us today but some of the questions that I had and I think some of the parents had were you know when we're we're discussing this 17 million being allocated we're nothing but grateful and and appreciative of that because there's been so many parents that haven't had that
but some of the questions you know that that presents to me as you know I sell cars that's what I do. you guys are you guys are really good at what y'all do and I know y'all are very intelligent and I know y'all you guys are always come up with a good game plan and when I sell cars a lot of people come in that are on fixed income fixed income usually averages around $2000 of people that can't typically get an auto loan. Their credit scores are below500, below550.
they're they're in a position that they need help and and and you know it's so many times I have to tell them no and walk him to the door and that that's hard for me. but it happens and I think that when we talk about the 17 million being allocated to towards supportive living I don't know if we touch base on this and maybe I missed it but was it 17 million for those families
that are that are currently waiting is that close to what550575 per family per month? I don't know if we touched on that or not Senator Ward well you can't
typically we don't allow public to ask questions but I'm I'm getting a lot of leadway today but you can't really take
that 17 million and divide it that way because you've got70% match from the federal government. So you're looking at roughly58 million dollars to soon be allocated to the new service not 17 million. does that make
sense? so that messes your math completely up but that's the way you have to look at this you have to put the federal match in it to yes
makes sense and and it also depends on the per personcented review. so you know it it's not an across the board. some some people may need more, some people may need less and that's determined based on that assessment that's done. so that I would just say
it's hard to to do it that way but these are good it's a this is
a good discussion and I think it's important to have good, you know good information out there
Speaker 337
2:04:04
yes sir. ok well that does absolutely mess my math math completely up. however when we you know we put that in. I mean I guess what does it look like to families because I know that right now I'm spending about30 to35,000 dollars a year out of my pocket for healthcare for my daughter because her her
daycare had to kick her out and and that it's not because they wanted to, they were really good with her it's just they didn't have the staff to be able to provide for her you know the ratio that they had I think it was 1 to10. whatever the ratio is mandated in Arkansas. I mean they followed it. they're they're Christianbased daycare they're great but I mean30 to35,000 a year that's I mean breaking broken up all over the waiters. I just I feel like we're gonna come up a little bit short of what some of those people need to be able to
provide for their children however I just want us to you know with the CES waiver please I'll look into this when we come to general assembly possibly and you know all of us come together and maybe get a good plan revised for the waiters because there's not a lot of families that can afford that in Arkansas the3035 1000 so and I know I've had a thousands of families reach out to me over Facebook. I've had a few posts go viral just kind of asking why a lot
of the questions that I think we all have and yeah I just wanted to say thank you to you guys and I appreciate each and every one of y'all for looking into this. my daughter, I know the the families and the children across the state of Arkansas really appreciate each and every one of you guys and again with you know Jennifer I think I think and if you look at the grand scheme of things she hasn't been here in her position for a long time she kind adopted this as she came into her position but I think
she's done a remarkable job. she's always answered every question I've ever had with DHSdds and and you know I can't thank them enough for continually putting forth the effort. I do want I do want us to really focus on this this coming up fiscal session if possible and again I just want to say thank you guys and God bless you thank
you and and I would say that's one reason I've allowed your questions from the chairs because this is a very important discussion. These are
some of the most vulnerable and thank you for your testimony you.
Yeah, hold on one second Mr. you brought up an issue that is like a crisis in the state of Arkansas for every family which is childcare. Childcare is really a crisis and we are looking and trying to focus on childcare policy, across the board for all all families because that that is a huge huge issue. so that that
is policy that is being really really strongly considered just fy that's wonderful thank you very much thank you
miss page Mccommmon And guys I I'll
tell you right off I'm not running again so I'm more apt to say things that I normally wouldn't
say but never try to take a government equation and do 2+2 and think it equals4 because I've been here 16 years and I've never been able to make that equal4 in my life but Miss Mcomon if you would introduce yourself for the record and you're recognized to
Speaker 345
2:07:32
give your testimony my name ispaige Mcammmon. I'm first and foremost I'murner andcord's mom that's my most prized role I was a public school teacher
Speaker 346
2:07:42
for ix years. I taught fifth grade math and science. my favorite part about it I ended up getting to be the inclusion teacher. I got to see what that was like to have our special ed kids come into our classroom our gen ed and that was my first runaround with disability. I think that God was setting me up there
before I even knew it that I was going to have a disabled child myself. I am here today not only to just speak of my story I have been online more than I would like to admit letting everybody know the truth behind what it's like to have a disabled child here in Arkansas. not even specifically the trauma that you have as a parent medical trauma as a parent is something that I can't even
truly put into words when you look at the rating scale I'm a school counselor forgot to say that school counselor so mental health is is huge for me when you look at a writing scale of war veterans and you look at parents of kids with complex medical needs they are extremely close on the amount of stress because you are always always alert and ready to meet your child's need and that child's need is not an if it's a when. so these aren't hypo hypothetical things that can happen to your kid. these are
things that are gonna happen you've seen it before. so having all these issues I started collecting stories from Arkansas families and reviewed36 independent submitted cases involving the CES waiver medicaid disability services pass and care coordination and I found that the same problems I was having kept showing up across families who do not know each other. So I went bigger and conducted a statewide survey. the survey had 258 participants from across Arkansas with more than 200 people answering every major question
I know that it's not every family in Arkansas and I don't pretend that it is it's actually a very small amount compared to the amount that we have here that are disabled but when hundreds of people with different disabilities circumstances and experiences when the system start telling you the same things I think we're past the point of pretending there are just a few families who have had bad experiences so from that my family is living a lot what showed up in those reports and I've got a few examples from today. Sourner is
2 years old. he has level3 autism, Parkinsonism, regression similar to childhood dementia and severe medication resistant epilepsy that is caused by a rare neurodegenerative and progressive disease called DHddS. Most days I can physically count my son having about50 seizures that is what I can only see his last EEG showed he's having more than that
my brain never really shuts off because I'm constantly watching him and trying to figure out what I'm seeing I decide whether something is another seizure or the beginning of a cluster whether he needs rescue medicine, whether I need to call neurology or whether this time we just need to drive to the hospital or call 911. if he gets really quiet I have to figure out whether he is just tired, had too many seizures and postectal space. his blood sugar might be dropping or if he hungry, thirsty, anything it's constant
Then we practically live at Arkansas Children's between appointments testing hospitalizations, medication changes and specialists. His condition is actually so rare that most of his care does not even exist here in Arkansas and we travel across the country for it and actually this past Sunday I just got back from Mountinnai in New York City which is fully funded from my own pocket. clinical trials is not what people believe it's another another damper on my my my finances and then somewhere in the middle of all that I'm also trying to maintain
a full time job as an elementary school counselor and be a mom to my other little boy Cord who's3 an older brother who is just as impacted by this as we are and then I get to spend what time I have left which is pretty much none fighting the system that is supposed to be helping us we keep hearing that people on the CES waiver waitlist still have access to services throughpa. I have a problem with calling something accessible because it is technically says it's covered on paper if a family has to get denied over and over, appeal those denials and eventually go to a s
a state fair trial hearing just to try to get a service. I don't know how we can seriously call that access. a child can spend months going without something they need while their parents do everything they were told to do and at the end of the day they can still lose it and the numbers from my survey back that up and the thir6 family cases I reviewed a quarter involved problems with medically necessary services or equipment including denials of things prescribed by doctors and delays in medi medically necessary care 44 % involve serious delays in getting decisions or services
made. Then I asked hundreds more Arkansas families what these problems had actually done to them then almost62% reported delayed therapy or medical care.most40% had lost access completely to their services and then almost40% had experienced delayed equipment or supplies I've heard past described in this meeting today as an amazing
Speaker 346
2:13:07
waiver waitlist. We have also been told that people on this waitlist are already receiving the life saving care
they need and that CES is not a life saving service and that the children on the waitlist can still see things like DME equipment through pass or through EPSdT. I understand that Turner has doctors seizure medication, hospital care and emergency medical care but I genuinely do not understand how DHS can take that back and use it to say that the services he is waiting for are somehow less necessary because they are not this thing physically keeping him alive in an emergency I have7 pieces of medical and therapy documentation supporting
what my child needs. His neurologist specifically documented that delays in obtaining his in-home support placed him at significant and avoidable risk of traumatic brain injury aspiration, prolonged seizures requiring emergency intervention and a more severe developmental regression. so if the doctors and professionals actually treating my child are documenting significant and avoidable medical risks from not having these supports. I have a hard time being told that he is already receiving the life saving care he needs as if those answer the question
there is a whole lot that can happen to a profoundly disabled child between being perfectly fine and being dead. I should not have to wait until Turner is injured aspirates or ends up in an emergency room before the support that could have helped prevent it becomes important enough to finally react. and I keep hearing that children on this waitlist can receive things like DME and other services through the past. then where are they? my child's out there not in a medical grade stroller because we can't get it Turner does not have the
equipment we have been fighting for my child cannot access ABA therapy while he sits on the waiver waitli. I'm not spending my time fighting for equipment inho support and therapy because I think these things would be nice to have or that this is a fun meeting to attend. I don't have time to fight over things Turner needs. I'm doing this because I'm scared and because the professionals treating my child or telling me what he needs while the system keeps telling me about everything he's supposed to be able to already receive but he does not have it
Suppose to receive DME is not the same thing as having equipment in my house. supposed to have access to a service is not the same thing as my child actually receiving it telling me past can fill the gap does not put a worker in my home, put equipment around my child or getur her into therapy he needs If pass is going to be used as a state's answer for why people can safely remain on the waitlist then where is the accountability when those services do not actually reach my child. you cannot count a service as evidence that this waitlist is ok and federally fine simply
because that service exists on paper. you have to look at whether the person actually received it and what's funny is Arkansas legislative audit has documented pastrelated compliance problems more than once. actually 2023palate finding was classified as noncompliance and a material weakness and it was itself a repeated finding then again in 2025 audit again reported a past managed care finding classified as noncompliance and a significant deficiency.
but nothing's been done so then you have families like mine we're telling you there are problems and you just heard the numbers from my statewide sum for my statewide survey about delayed medical care, lost access to services and delayed equipment and supplies so when families are telling you the services are not reaching them the state's own audit has documented compliance problems and then parents are still having to fight denials and appeals to get services that supposedly already exist for their children. I don't
understand how we can call pass in any shape or form a gap filler. I can show you exactly what that gap has looked like for my family. and some transparency issues on august 12thurner was dedidd supportive living. I know that we have already discussed that but this is just an example of of denial the denial came from empower which is our pass provider it stated he was denied based on his age, development and current needs. I question that denial, appealed
it and then I received empower's actual supportive living policy that policy gave me a better barrier. or a different barrier excuse me it said supporting lidd was only covered benefit for the CES waiver slot and my since my child did not have a CES waiver slot, he would not receive it again, I know that's coming up in January but that's besides the point of what I'm discussing. I got a denial about one thing I fought it, Ire received I got7 different documentation turned it in to then be told just kidding he does really qualify
for that but we're not giving into because on a waitlist that's changing the goalpost if that was a problem in the beginning why did I have to fight for you to just tell me in the end that it was I wasn't going to get it So then on August 14th I emailed Dds director Jennifer Bri because I had read Appendix B3 of Arkansas CES waiver. The language I was reading specifically included people for whom waiver services were required here it is as an emergency to prevent immediate
placement in an institution I wasn't askingddS to create a special exception for my child I was asking them to apply language that was literally written in Arkansas's own waiver. I then sent another7 pieces of medical and therapy documentation supporting that request. Turner's including Turner's neurologists specifically stating the unavoidable risks that I've told you about and supported expedited access to the CES waiver to receive that support of living on August 20th, Jennifer
responded in writing that DDS recognizes only3 limited exceptions even though it states for and the normal waitlist order they said it would have to be an administrative or clerical error someone already admitted to an institution who is being discharged back into the community or someone in APS or CPS custody. then her response saidddS limits exceptions to those situations because they are objective rather than making what DdS called subjective determinations based on someone's level of need, severity or acuity
but I wasn't asking DdS to prevent that turner or to decide that Turner deserved to skip the line because I think his needs are worse than somebody else's. I was asking DdS to apply language already in the CES waiver about services required as an emergency to prevent immediate institutional placement. in that same response Jennifer acknowledged that the waiver language had relied on was in quotes confusing and said DdS plans to revise that language when the waiver is renewed in
2027. this is what families mean when we say the goalpost keeps moving. This is one in millions of examples So Turner was denied supportive living based on his age, development and needs. When I questioned that, I was given a policy saying nope it wasn't because of that it's because you're on a waitlist. Then I went to the CES waiver itself followed the language written there and provided seven pieces of professional documentation supporting his need and the answer was that DdS recognizes three different exceptions and
plans to change that language I relied on next year. Meanwhile I keep hearing about whaturner is supposed to have access to. I'm his mother. I live in the house with him and I know what we actually have So if pass is an amazing gap filler then some somebody needs to start holding it accountable for whether that gap is actually being filled because eligibility is not access, coverage is not care and telling me my child is supposed to receive something does not abs it does absolutely nothing for him at the service therapy or equipment never actually reaches him.
and while all this gets discussed in terms of programs funding and waitlists there are actually children getting older and sicker while they wait. in my survey survey38.5% of families reported increased safety concerns and 16.7% reported hospitalizations or worsening conditioning while waiting. I personally know a family whose child has a terminal illness who had to return had to turn to hospice care to get what he needed to be comfortable at home because they could not get the care he needed while he sat on the waitlist. His family knows their child is
dying they're not asking the state of Arkansas to save a life. they're asking they're trying to make the time he has left on this earth safe and comfortable at home with the people who love him. the least our state can give that child is the dignity of living safely at home with his family while he literally wants to die. in the first36 families I reviewed there were already families describing projected weights that could exceed medically meaningful timelines or even life expectancy. I forgot it over there but I brought a picture of Ava who who
has passed her family is pretty upset that this is still a problem I know ending this wait list costs money, I know there's a state budget, I also know that every dollar you are looking at saving has an actual human being sitting on the other side of it. My child is not a budget line item and I'm done accepting that his quality of life can depend on whether Arkansas decided there was enough room for him in this year's budget. the people making decisions about this waitlist have the luxury of leaving this meeting some do excuse me, I will say excuse me some have the luxury
of leaving the room and not having that decision follow you on the way out. I don't. I go home, I count seizures. I wait to call 911 and I wait for another crisis to happen because it always does we live with the consequences of these decisions long after everybody leaves this room on top of that my husband has leukemia and I have another little boy, a three year old that I'm trying to have a normal life which he has nowhere near my son Turner requires
essentially constant supervision 24/7 and his medical needs and the lack of support have already cost me my almost my job and and a large majority of my income there have been times sitting right now I can tell you we are financially and emotionally drowning At one point, actually I'll tell you3 times I've reached out to the state in writing and let them know how bad it has gotten including that I have a history
of depression and that the amount of stress we were under was putting me at risk for my suicidal thoughts returning. I actually wrote that I was not including it to be dramatic whatsoever you should talk to my counselor, talked about the medication that I need to receive for stress and how my heart actually started having pal palpitations physically I am going down I am safe now but I'm not going to make that story prettier because it isn't comfortable to
hear. I knew I wasn't ok and I asked for help multiple times I never received a single thing of help other than I was told that I would have to keep my child on the waiver wait list. Nothing was ever offered to me or my child. not a single thing I knew I wasn't ok and I asked for help but in my survey 85.4% of families reported emotional stress or burnout. 61 % reported financial hardship
and almost half had stopped working or reduced their work. we are not martyrs neither me nor my child Turner was put on this earth to inspire anybody. about how much we can endure God did not make me need less sleep he did not allow my heart to beat faster just because Turner's disabled and he did not give our family an endless supply of money or time or the ability to absorb an unbelievable amount of stress.
I am just his mother I love him more than anything in this world and on this planet but I am a human being just like you. at some points families will figure it out stops being a plan.arents figuring out is exactly what has allowed a broken system to keep functioning just like this we keep finding some way to make it through another day because our children leave us with no other choice but that should never be mistaken for proof that we don't need help because I'm telling you now we do.
my survey asked 254 people whether they had ever been told directly or indirectly that institutional placement foster care, hospitalization or a crisis situation could help speed up access to services in 80 people said yes. that is almost 1/3 if the system becomes easier to access after a family reaches crisis then we have waited far too long to help them. that's not a resource I started collecting these stories because I needed to know whether that was happening to my
family was happening to other people.36 families told me it was. Then I asked hundreds more Arkansans and they told me the same thing I don't know what else families are supposed to do keepep coming up here to prove this point. We have told you this what this is happening we have shown you the medical consequences the financial consequences and what this is doing to caregivers some families have been waiting so long the wait is competing with the amount of time they have left to spend with their child who is dying.
I can keep fighting for Turner and I will, but what I cannot do as his mother is fix a state system that has decided he has to wait for the care he needs that is not my responsibility apparently we have taken it upon ourselves to try to convince you that it is yours so I'm asking you to stop asking families to survive this waitlist while Arkansas figured out how much it is willing to spend on us. Fund the CES waiver at the level it takes to consistently keep the weightless moving at least not just reduce it enough to make the number pretty one time.
because I should be able to go home today and be Turner's mom. Instead I'm having to keep coming back here. this is my fourth time in a meeting just like this to convince the state of Arkansas that his life and his quality of life are worth funding
Speaker 345
2:27:29
please prioritize my son in the disability community of Arkansas. Thank you. no clapping no clapping or
I have to clear the room. p re s ent ative pilkington you're recognized for a question.
Representative Aaron Pilkington
Unverified
2:27:41
Thank you.'m I'm over here ma'am. sorry no you're all
good. I appreciate your testimony today I know how difficult this is for you. I I tell people all the time you think your life's hard goes sit an hour in the waiting room or the lobby of children's hospitals and you will be thankful for all the hardships you have because they're nothing compared to what those parents are going through I have some really small technical questions so I I not even that but just I'm just curious you said you were paying for clinical trials. how much have you paid for clinical trials so far and do you have the name of those companies? Yes
Speaker 352
2:28:16
it's through Mountnai ums researchch hospitalspital. Our doctor is Doctor Eva Marrava. she's a geneticist at this point I know we have running I haven't paid for it all because it's still in just tell me how much it costs total so far OK. and is that one year's or one trial
Representative Aaron Pilkington
Unverified
2:28:37
or no sir I mean you're adding in
Speaker 352
2:28:40
flots to New York City and things that's separate I didn't even add that
Speaker 346
2:28:47
it's all the way through just to have an appointment there is money just in general but the clinical trials itself we pay out of pocket
Speaker 352
2:28:56
for those as well. monthly it's about $100 a month for the supplement that he's taking that'scitrol. thank you and then the other one and
Representative Aaron Pilkington
Unverified
2:29:07
some of your questions I've written down you've asked you answered in your testimony later on on the state fair trials would you say the
percentage of those you and your other families have won when you go to those Oh I
Representative Aaron Pilkington
Unverified
2:29:29
that would be a you know what I mean I don't have
that data on that so don't want to you on that that's fine that's fine don't have that either that's why'm asking you can probably try to get it from from the passes or DhS and then my third is you know you've surveyed all these families and
I'm curious I'm sure a lot of them used to live in other states live here now so I'm sure some have been lifelong arcas and so have never experienced any as like but I'm I'm curious how how does this system compare to some of those other states you know that's I think that's always good for us when we look for solutions to kind of see what maybe some of the surrounding states are doing and so I don't know if you've got any testimony from any of those families of some of the programs they've seen in other states could you elaborate on that? Yes,
Speaker 352
2:30:13
and there are several other states that have recently looked at the waitlist and have
Speaker 346
2:30:18
abolished it I know one state used their I know this doesn't apply to us but they use their medical marijuana fund to completely that is what they have dedicated now they've dedicated yearly that is how they are paying for the waiver there are states like Pennsylvania I believe is one of them that has a great program saddly, majority of the people that have come here to Arkansas have lost their waiver once they have gotten here. so they have had these supports the
whole life moved here to the state of Arkansas and then have it to start
Speaker 345
2:30:53
from ground one so then put on the waiver waitlist and like we said before there is no priority so even if this is the worst of the worst case and you move from one state that has a waiver automatically to hear you're losing everything and that's where some of that data comes from as well of complete
Representative Aaron Pilkington
Unverified
2:31:09
loss of services. OK that those are the questions I had thank you appreciate it thank
you for your testimony you just follow up a complete loss of services of the waiver services not medicaid ma'am yes
Paige Mccammon
Unverified
2:31:22
yes ma'am there is some like when we talked about like therapies when I was saying they
Speaker 346
2:31:28
said therapy not yes and so that that is something they will lose as well. basicsic therapies are covered by like ABA therapy is not covered for my child that's two different waivers and I would actually have to take my child off
Speaker 345
2:31:41
of the waiting list now to even get him in one therapy we need
so there's a lot of barriers yeah variations yes OK umpresentativeRose, your re recognized thank you madam
Representative Ryan A. Rose
Unverified
2:31:52
chairir thank you for sharing your story in detail with us today I think it was
June 1st or June 2nd. I watched a video that you did in totality at more than once in fact and so thank you for continuing to fight for your family and and several other families that I I imagine you continue to connect with every single day
just just for the sake of of understanding for some who maybe haven't heard your story or aren't as
familiar with this waiver. did you in your application to get on the waitlist? Was it a smooth process? No sir
Speaker 352
2:32:36
I would say that was actually one of the layers that led to me to suicidalation was how many times I had to turn in my CES waiver application and thank you for for bringing that up the depending on the size of the
Speaker 346
2:32:56
font it can be different pages but mine was exactly 108 pages that I had to fill out. and you basically if you go and read the questions, I mean they're very detailed asking how long like basically how long can your child survive in a room. mean that's what you're going through and and answering or how long would it take them to put their finger in this plug. I mean they're thoughtful questions and I made the mistake in the very beginning of thinking that I could trust that this paperwork be mailed and I did not make a copy and
Speaker 346
2:33:31
make again. I mailed it off kept following up, following up somebody told me yeah got'm pretty sure I've seen it. nothing nothing. I finally get to talk to somebody and they're like no it never got to
Speaker 352
2:33:44
us. So I refilled out again went to the post office to actually get it certified mail so I could track it and so refilled all those things again
Speaker 346
2:33:56
and sent it through the mail. I received a notification that it was dropped off at the DHS office and it sat there. I called like every other day hey does somebody have it because my child's not ever is not going to be placed on that waiver waitlist until they run it. it doesn't it's not when I send it in it's when they put it in I mean it took months. I mean I had to keep calling keep callinginally they answer or no I don't remember the names because I don't have it here but
somebody at DhS was like oh my goodness, here it is we found it. it got lost in another office
and it's been sitting on this person's desk forever so
just sorry I mean I think we've got some moving pieces here because it is confusing but the ABA you're confusing that with the autism waiver so there's different things here and then I think your medical appropriate appropriateness that's determined for kids in a different through the EPSdT so
there's some moving parts here but I just want to make sure and then last thing I would say is I respectfully I I just want to respect the other people that have signed up and just to let members know we have a meeting in this room at one o'clock. and so and I have 1,2,3,4 more people signed up to testify so I would love for those folks to be able to say what they came here to say but all that depends on the length of your answers and the length of your questions
I'm sorry really didn't that's just answering this is one of those factors when I tried to email the person that was under not understanding this is one of those factors that are kind of outside of my control. I mean I could cut you off but I don't want to do that but I just, I just I'm asking people just to respect each other's times that's all Senator Irvin I appreciate that and thank you
Representative Ryan A. Rose
Unverified
2:35:49
for for directing us on this and I'll just say and and I'll allow you to to finish however you need
at the at the chair's direct ion but I'll just say
I don't think we can fully comprehend what you and your family have been through and the challenges and I'm not assessing blame to any one person in this room but I I will say that families like yours and others have been let down by your state and don't know if anybody said it but as a representative of your government we apologize for where we have failed and let you down and hope that progress will continue to be made to support families like yours in our state thank you
Speaker 346
2:36:36
was lost and thank you for for saying that that's the first time other than from p re s ent ative inn it that we have been apologized to for things that have been documented data wise shows that that is not happening. but thank you
you for your testimony um, OK, the next person I have is Lauren Newberry. and if you'll just come forward and state your name for the
record then you're recognized to give your testimony. Thank you. Good
Speaker 388
2:37:19
morning. thank you chair and thank you committee for hearing us and the parents this morning first I just want to
Lauren Newberry
Unverified
2:37:26
preface this with this is my first time testifying in front of a committee so I apologize if I trip up my
words a little bit my name's Laura Newberry and I am the mother of twin boys who are both on the autism spectrum I also want to clarify that I was a special education teacher in person in the state of Arkansas but due to my son's disabilities. I've had to move to remote teaching and had to become certified in the state of Missouri for my current position just because of limited job availability with
Arkansasvirtual Academy and things like that so I've had to change the way that I do my job first and foremost for my children I'm submitting my testimony today to share our family's experience navigating Arkansas's waiver and medicaid system and to advocate for the many families who are waiting for access to services that could make a meaningful difference in their lives. I do not have data in my testimony page and blake
have done the major resource for our parent group and the major research, and so my testimony today is just coming to you as a mother. my sons are twins but their needs are very different one of my sons Levi, he hasle3 autism and re and requires substantial support with communication sensory regulation and daily safety. He's a sensory seeker and has a tendency to elope, meaning he may wander or run away without recognizing the danger
keeping him safe requires constant supervision and vigilance something as simple as going into the next room in my own house can require additional planning and preparation and let me clarify this we have an entire home security system that we've purchased out of pocket. We have indoor and outdoor video cameras with sound. we have window alarms, door alarms we have extra door locks because my son knows how to unlock the door
and whenever I leave a room and I go into the next room per specifically our laundry room which is located in our garage, I have to take my cellphone with me and I have to monitor my son or I have to take him with me myself because of the amount of supervision that he needs. My other son Liam, he is level 2 autism and a speech delay. He is more cognitively aware but he struggles with communication social skills and transitions these challenges affect his
ability to navigate everyday situations and communicate his needs effectively. although the boys share in autism diagnosis what works for one does not necessarily work for the other each of them needs individualized support that recognizes their unique strengths and challenges as their mother I'm constantly balancing their different needs while trying to give both the boys the opportunity to learn, grow and become as independent as possible. I want them to be safe to communicate their needs to participate in their community
and to have an opportunity to reach their individual potential achieving those goals requires more than love and determination. It requires access to appropriate services, equipment and support. Both of my sons have been on the CES waiver waitlist for a little under a year so we're at the bottom of the list. During that time we have continued to navigate their needs while waiting for additional assistance. and I believe it was this representative over here I can't see your name from over here
but you had a specific question about the page numbers. just for our application that is without submitting any documentation that I have on my son's our application was43 pages long. thank you I want to
go back to what we talked about at the beginning and I I apologize I'm trying to let everybody say there's say what they've talked about but with Mr Watson and Mr. Landers, I just we had tried to say please talk about the service
that's on the agenda, the supportive living service and not the waiver slots and we gave alaitude services OKok so I mean we just we gave latitude to to page and because she had the survey and things like that so if we could just try to not repeat um, testimony because they have moved to other meeting but I know I'm I already have only have one member of the senate here and I just want to make sure everybody gets heard so I'm almost finished that's
fine but if you could talk about the supportive living services and how that will impact you or your children. I think that would be really helpful testimony thank you
Lauren Newberry
Unverified
2:42:21
one of my sons currently receives ABA services through the autism waiver and I am genuinely grateful that he has access to that support. However, the autism waiver is a three year program and the allocated funding must last for that entire period. Families have to consider how those resources will stretch across the three years while their children's needs continue to evolve and access to ABA
services is valuable but it does not eliminate the need for other supports so unlike Paige and her family, my family chose for my son to receive aBA services through the autism waiver rather than be on the CES waitlist because of the weight so while he is on the autism waiver waitlist. he is not on the CES waiver waitlist. additionally Arkansas does not allow an individual to participate in more than one
waiver program at a time. This means that my son cannot access CES waiverurfaces or a pass provider while enrolled in the autism waiver. We are grateful for the services he receives but those services do not meet every need our family has. We are left trying to fill the gaps ourselves while waiting for access to additional support the CES waiver could help our family access respite care, sensory equipment, a tracking device to improve my son's safety due to his elopement risk. alternative communication devices, alternative therapies
and specialized nutritional equipment due to his dairy allergy. these are not luxuries or conveniences they are practical supports that could help us address our children's individual needs improve their safety and quality of life. I recognize that the state funded programs operate within budgetary constraints and eligibility requirements. However, I'm asking this committee to consider the real consequences of leakthy waitlists and gaps in services for families like mine. So I respectfully ask today that you consider the followingview
restrictions on participation in multiple waiver programs to determine whether individuals can access complimentary services when one program does not meet all their needs improve the application and appeals process so that families can spend less time navigating administrative barriers and more time caring for their children and expand access to practical supports including respite care, caregiver assistance, safety equipment, sensory resources and specialized equipment that supports daily living. thank you for taking the time to
hear my family's experience and for considering the needs of Arkansas families navigating the way the the waiver system I hope you will remember that behind every weightless number is a child and a need that cannot simply
wait. thank you for your testimony and just to clarify you're not your child is not on the
Lauren Newberry
Unverified
2:45:06
CES whitelist one of my children is because he's waiting on a spot for the autism waiver. see what I'm to clarify in Arkansas you have to choose which waiver program you're
going to be a part of. so both of my children were a part of DdSok and then when Levi came up on the autism waiver he dropped off of theddS and the CES waiver waitlist so he is only receiving services from autism waiver and he's only able to receive services from autism waiver and they both have autism? Liam is currently still with DDS because he's still waiting on a spot on the autism waiver. but when his spot comes up then he'll drop off of both
of those waitlists and then when that threeyear program is finished with the state then they will drop they will come back up on the
CES waiver waitlist. see and and they're both on Medicaid and they're they're assigned to a
Lauren Newberry
Unverified
2:46:04
pass. No, you cannot be assigned to a pass while you'rei while you're on another waiver program. So Levi is not assigned to a pass but
Speaker 393
2:46:14
Liam is currently receiving services with DdS because they're they're under three so
you're serving you're you're receiving medicaid healthal I have not
Lauren Newberry
Unverified
2:46:24
personally spoken to anybody that is with a pass provider or pass program and when I have spoken to someone trying to get them on a pass. I was told that you could not be on more than one waiver program with the state. OK thank
you for your testimony OK.erry hill
Jerry Hill
Unverified
2:46:52
No you're fine I'm really super nervous. I've only used to come here on field trips so my name iserry Hill do am I doing it right
you did perfect. I was by state your name for the record but you're ready for me. Good. I apologize for interrupting each other but my name is Jerry Hill. I'm a mother a Gigi and a retired home health aide. I'm actually and ought to be here because I grew up coming here on field trucks bringing my kids here and actually be sitting here as
actually pretty cool but with that being said if we have enough money for bombs and we have enough money to take care of all of our children and grandchildren. thank you again for allowing me the opportunity to speak especially to the ones who stayed and paid attention to actually care what we people have to say thank you do you have a you're just a home giver oh no I'm more than that but that's just I didn't want to take up any more valuable time. No, but do you have a child on the waiver or
Speaker 173
2:47:47
or re receive that would receive the service a grandson who's on the way on the
Jerry Hill
Unverified
2:47:54
list ok I was also declined to renew my when I wanted to renew my certification this year that I've had since I was 18 years old because I volunteered for the last two years in the state of
Arkansas refuses to recertify me. OK. all right thank you thank you thank you for your
testimony and being here. OK I may not say this correctly. I apologizetamara OK did I say that correctly? Tamara Cooper and then you could state your name for the record and you may proceed
Speaker 405
2:48:26
I'm not gonna take a lot of time my testimony is in the room Macio so I he has SA type 2 it's a neurodegenerative diseased additional diagnosis comes with it he has lower like his muscle tone is weak he started standing he never walked and besides all that I wanted to know when governor Sanders had mentioned that there were 25 out of 29 services that we had
access to on the waitlist like if she's gonna add supportive living what what are we still fighting for you know so I asked around I asked DHS what are the other four services that we were missing I asked past workers I never got a clear answer nobody knew. I asked waiver workers but I know I think it's MelissadHS they testified that we have 25 services that are waiver related
but according to their website and also I never read a code before but it's Arkansas code 20 CAR it has those little squiggly lines and then535102. there and according to their website there are actually only 9 CES waiver services and I'll I'll let you guys know what those are and and none of us have access to them and a lot of us are in desperate need for them. I know
it's not easy to provide these services but I don't have an extra set of set of hands at home or anything like that so I'm lifting my son he's over 100 pounds like a sack of potatoes on medicaid I've been denied a who your live ramp another wheelchair Arkansas didn't pay for my son's wheelchair. it came from Michigan. he's outgrown it it's completely stretched but anyways let me tell you what those services are they're respite care supported
employment supportive living, specialized medical supplies adaptive equipment community transition services consultation, environmental modifications and supplemental support all the other services matter of fact all the 25 services that have been mentioned by the governor and also DHS todayc according to their website in state code those 25 services are past services they are not related to
the CEs waiver like my son I have another son that has special needs but he's more on the behavioral and mental health side he also has access to all 25 of those services and he is not on the CES waiver
waitlist. and that's my testimony all right thank you so much. I appreciate your testimony. thank you for being here. he
likes to glad we're growing that's awesome hopefully if I will just remind people too these committee meetings are live streamed but they're also
recorded so some of the information that was given in testimony you could go back and look at and maybe give you some clarification. I mean anybody yeah yeah of the testimony we had previously thank you so much for being here and with that we have heard from everybody thank you again for coming and being a great discussion, great dialogue and I just appreciate everybody coming here and participating today.
as we go forward, I think we'll have different topics and issues as they come up you know as it may be relating to the slots themselves or the past and medical necessity and determination. those are all different subject matters and so I appreciate appreciate the latitude there with that is there any other business to come before the committee all right uhpresentative innnett for what purpose?
Representative Denise Jones Ennett
Unverified
2:52:40
Did she sorry yes thank you chairwoman I just had just a quick comment I want to thank the parents I'm a part of the disabled mean disability community because my son who is a twin he has autism so I've been through all these things that the parents are talking about and I just want to just say that I'm proud of you all for coming out and I hope that we as a body can help
alleviate some of the barriers so our most vulnerable can get the services that they need. thank you thank you appreciate that
and and let me just say to you um'm a really umm I am so glad we're able to to extend this one this service and I just don't want that to get lost in the conversation because the folks on the waitlist this is supportive living services is really really gonna be a big deal and a big help for
everybody and so I look forward to getting that feedback as that kind of rolls out clearly we have budget questions and budget issues as we look forward through that but it's a unique way of approaching the problem and I I do appreciate that and I think it's it furthers the policy debate about how we can just really get
services to people and within what systems we have and the flexibilities perhaps and then figuring out the best path forward for that. so thank you all for the
discussion. Thank youpresentative innnett for those comments. are there any other business to come before the committee seeing none we are adjourned
Agenda
A. Call to Order
B. Consideration to Approve the September 1, 2026, Meeting Minutes [Exhibit B]
C. Overview of University of Arkansas Medical Sciences (UAMS) Co-Management Agreements
D. Presentation on Pediatric Complex Care of Arkansas
E. Discussion of Community and Employment Support (CES) Waiver Waitlist
F. Department of Human Services (DHS), Division of Medical Services, Review of Rule, Physician Assistants and Clinical Nurse Specialists as Primary Care Providers [Exhibit F] ̶ Elizabeth Pitman, Director, Division of Medical Services, DHS
G. Arkansas Department of Health (ADH), Division of Health Protection, Health Facility Services Section, Review of Rule, Rules for Conducting Criminal History Record Checks for Home Health, Hospice, and Private Care Agencies in Arkansas [Exhibit G]
H. ADH, Division of Health Protection, Health Facility Services Section, Review of Rule, Rules for Freestanding Birthing Centers in Arkansas [Exhibit H]
I. ADH, Division of Health Protection, Health Systems Licensing and Regulation Section, Review of Rule, Rules for In Vitro Fertilization in Arkansas [Exhibit I]
J. ADH, Division of Health Protection, Personal Care Services Branch, Review of Rule, Rules for the Arkansas Kidney Disease Program [Exhibit J]
K. ADH, Division of Health Protection, Pharmacy Services Section, Review of Rule, Rules for Public Access to Epinephrine [Exhibit K]
L. ADH, Office of Alcohol Testing, Review of Rule, Rules for Breath Alcohol Ignition Interlock Devices [Exhibit L]
M. ADH, Division of Public Health Practice, Environmental Health Branch, Review of Rule, Rules Pertaining to General Sanitation [Exhibit M]
N. Other Business
O. Adjournment
Documents
Speakers
Representative Jeff Wardlaw Chair
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Senator Matt McKee
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Representative Jack Ladyman
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Representative Kenneth B. Ferguson
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Representative Fred Allen
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Representative Glenn Barnes
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Representative Dolly Henley
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Representative Howard M. Beaty, Jr.
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Senator Missy Irvin Chair
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Representative Aaron Pilkington
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Allison Guthrie
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Representative Mary Bentley
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Representative Denise Jones Ennett
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Representative Ryan A. Rose
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Representative Wayne Long
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Representative R. Scott Richardson
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Representative Jeremy Wooldridge
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David Watson
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Paige Mccammon
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Lauren Newberry
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Jerry Hill
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