Waiver Reimagine Advisory Council Oct. 24, 2024, meeting transcript

Again, I want to welcome those who have been able to join us so far. We will give a minute or two to let other people join. We will get started in just a minute.

We will welcome those who join us later. Good morning. I am your neutral facilitator today. I am a middle-aged white woman with shoulder length brown hair wearing glasses and sitting in a homework environment. I have a background on as well. I want to welcome everybody. We have our live captions link. We can go on to the next slide, please. Today's agenda. We will go through our typical welcoming. We will review the agenda and our meeting guidelines. We will talk about the objectives for today's meeting. Heidi has some updates for the group for DHS. We have a guest speaker, Darcie Thompson, who is coming back with some information on request from the group about the wager reimagined survey. Then, Natosha will be spending the bulk of our time together today talking with you about what we heard from members being input in August, and then moving forward, what areas of focus people are interested in. So, that's our agenda for today. We can go on to the next slide. I will pick out a few of our meeting practices, but these are our typical meeting practices to help us on the input of everybody. The time everybody is given for today's meeting, to help the meeting be smooth and equitable. We ask when you speak if you could reintroduce yourself and the perspective you represent, that's helpful for us and for note-taking purposes. Speak slowly so the captioner can caption what you are saying. It's helpful when you're speaking if you are mindful of the time and state your main thoughts early. We remind that all members have the right to share their ideas and all perspectives are valuable. Let's go on to the next assume positive intends. We want to advocate for all, not one particular situation. A reminder that if you think of chat as speaking verbally in a meeting, it can be distracting for the people who use screen reader. We have had a request for them to keep our chat to necessary items only, so thank you for that. Next slide, please. The objective for today's meeting based on that agenda is to present information to you on the waiver reimagined survey as requested by members here. To confirm what we heard from members in our August meeting and to learn a little bit more about concerns to help form future meetings. Next slide, please. Heidi, I believe it's over to you.

Hi.

Hello everybody. Good morning. Can you hear me? This is the first time I have spoken this morning, I realized. [Laughter]

You were quiet at first but it's coming through better now.

Okay, great. Thanks. I am going between a couple different meetings today, so you will see me leave and then come back. I know this is a very important meeting, but I have another very important meeting happening at the same time. There's several -- in the meeting today. The choices implementation, moving from that version to the revised meant choices tool and the impact being spent for people. We are now, as of October 1st, fully in the choices revision, also known as MID choices 2.0. Going forward, it will just be referred to as MN choices. All assessments are being happened in the MN choices tool that's been revised and updated. It is continuing to be worked on as things come up that need to be fixed. That has continued to happen and will continue to for a little while until we get to a stable place. We are working really closely with lead agencies to identify a prioritization for making those changes, and it's going well. The rollout is going well. We are getting positive feedback but it's working better for people, especially as people are now starting to have a second assessment in the revision, and -- having information that will carry forward from assessment to assessment. We are really hoping that that will result in decreased time for people to be working on that assessment tool and create more efficiencies for the lead agencies to be able to process through that more quickly. I know this group was particularly interested in hearing from people about reduction and CDC S budgets, and other types of reduction that has resulted in -- choices for their vision. We have been, since we started this rollout last year, we have been looking at that information. We have definitely heard anecdotally that a lot of people are having budgets reduced. We have data we have been looking at that shows that people are having -- some people have these budgets reduced, other people have increases in their budget. It's about equal amounts of people who are experiencing both of those. We have been asking the assessor's to reach out to us if they are experiencing a situation where somebody's needs have not changed, and there CDC S budgets have changed. We have asked for people in those situations to talk to their assessors, and for the assessors to reach out to DHS if they agree that there has been no change in their condition, or for the person themselves to contact DHS if they are not getting what they need from the assessor. I reached out to our speesixteen. They said they've heard from 40 people in that situation. The assessment is showing a reduced budget. That's not been demonstrated by the change in condition. We are adjusting each of those situations individually. Some of them result in clarification with the assessor on what they are trying to assess. Some have resulted in changes in the guidance on how it's defined, and some of them have resulted in different assessments for people. We haven't seen an increase in the number of appeals related to CDCS budget, though the data I have for that is through the end of July, so when we are able to get more data, we will see what has happened over the last few months. We are monitoring this very closely and making sure that we are having a stable assessment tool to build the budgets on for waiver reimagined. Any time we have this large system change, from one assessment tool to another, there will be some of this going on. We want to make sure that we have those pieces adjusted for before we are able to move forward with establishing what the budget methodology will be. I also want to encourage all of you to get that message out about contacting DHS. If you are hearing from people that their budgets are going down. We are not really seeing that huge -- of people reaching out to us. I am concerned that people may be thinking that it's not helpful to reach out, but it absolutely is. I would encourage you all to let your networks know that this is something we want to be hearing from people if their budgets or assessment results are not matching what they had in the past without -- changing condition. That is the update I have. I'm happy to answer any questions you all have about that.

Does anybody have questions for Heidi?

Hi. I'm -- the volunteer and also CDC S support planner. I've had a lot more people now who I do support planning for who have had the choices 2.0 assessment. I would say about 50% of the people that I've worked with have had no changes, or an increase in needs, have had significant reduction in budget. The response from the county so far. Of had one case manager who explained why, and the rest has been it is what it is. Who were those people reach out to at DHS if they would want to chat with somebody about their situation?

I will ask the others from DHS on the call to help me with this, but it is the DHS contact form. I don't know if there is an email address associated with that.

This is Sarah. I will put it in the chat as soon as I grab it.

Thank you.

Any other questions questions? You can raise your hand. I can see those and call on you.

This is Rosalie.

Go ahead.

Thank you. Thank you for taking the time for the update today. My question was going to be similar to poly, so I will utilize the contact form. Outside of CDCS, I have several individuals who just had their MnCHOICES 2.0 for the first time. Was circulated to the community right now is there's a lot of people mentioning that the counties, so at the county level, case managers are being deterred by their supervisors, specifically not to support people with appeals, and despite the fact that it does state that case managers are supposed to help people through that process. I have had to pick up quite a few cases of supporting individuals. I know it's happening statewide with some of the connections I've been with. I'm curious. You mentioned that there was a specific guidance going out and being shifted. This seems to be a continued issue. I personally as case manager supervisor, case manager -- back in 2017, had the same issue where I had supervisors telling me that you can't bill for this. I know it's misinformation, but my biggest concern right now, if your team is going off the data of appeals. There's a lot of other roadblocks in that data set I would, based on my own anecdotal information, say faulty, because there's a lot of counties right now saying this is what you get in, and no other support. I am working with disability Law Center to figure out how we can join forces as a network to figure out how to support this big gap of people needing appeals. There's not enough people providing the resource, but in fact case managers are supposed to be doing this. I just want to put that information out there, because that's what's happening. Impact -- on the ground right now.

I really appreciate that, Rosalie. That is definitely concerning. I want to make sure we aren't just looking at the appeals data, that we are looking at the choices, assessment data, but that in conjunction with what we are hearing with people contacting them directly, and also the appeals. Just looking at all that together. At a system level we are definitely looking at the data, which driving people to increase or decrease. But just knowing that when people individually reach out to us, that those situations will be addressed more quickly than what's happening on a system level. We aren't just looking and saying there aren't many appeals so it must be -- I appreciate you bringing that up. Thank you.

Thank you both.

I am a mother of a young adult with autism. I appreciate the state update. My question is -- with the fact that we are already seeing some discrepancy with the budget, what exact measures are we going to look at? It sounds like you are working on things and tweaking them as issues come up and are working on it with accounting. How are we going to be able to validate that is an effective tool since it's the ultimate determination of your budget? That's my first question we are one of those people that have it in our budget even though there is no change. One concern I will share is because we've only had this now, the assessment one time, they aren't even asking about medications anymore which is concerning to me. If you have somebody who was Dutch with a feeding tube and you have to deliver this method in a different way or maybe have injections, that's a big part of your budget needs. I will ask that that be reconsidered, but the bottom line is how will we validate that has been successful? Are we just looking at appeals? It was told my county that I could make an appeal or ask questions about the budget. They said "that's what we are seeing,."

That is good feedback. We do know that there will be some changes as we moved to this statewide assessment and try to be consistent across the state on how questions are asked and how it's interpreted. There will be some fluctuation, which is expected. That happened when we moved to MnCHOICES 1.0 from the assessment tool. What we are seeing now by the data, there is more -- I care member the word I just said. There's more -- moving up and down them we would have expected. I don't have an answer to the question. Told Mike on we are going to measure and make sure it's the right assessment tool. It's what we are looking at right now.

If you have input and things were looking at, I'm happy to take the input. We want to make sure the assessment tool is reliable, valid, but it's assessing people accurately, and that it's giving accurate assessment results. I'm concerned to hear from all of you that the message about reaching out to DHS when people have questions about their assessment results, and that being communicated. We tried to communicate that clearly to the agencies. I'm going to take that back. We need to be hearing that. What we can't tell on our end necessarily is if there was a change in condition that would precipitate this change. In the way we have looked at the data so far. We are taking a deeper dive into those fields that drive the CDCS budget, and looking at this person's needs change in this field. Then, connecting with the assessor to find out if it went down because they did have a change, they are more independence in that area than they were before, or was it a different interpretation of the question that was not intended? That happens when an individual reaches out to DHS or the assessor reaches out. It's that deeper level conversation about the fields that impacted the assessment tool. We aren't able to do that with everyone, which is why we have asked for people to individually reach out and let us know if there's specific situations we need to dig in more. When we start digging in, we are keeping track of those things that maybe wrong interpretations by the assessor's. If it's happening more broadly -- and change in our training in the way we educate the assessor's. If it is something that has just happened this one situation, we can help update the assessment tools so we can get accurate assessment results.

I see -- has her hand up. We also have two more questions and we are at time, so I wanted to do it time check with folks. Natosha, do you have something you want to chime in on?

I don't want to cut off Kelly's response. I do have a MnCHOICES additional context, but if you want to share -- I think I saw you pop on to say something.

I wanted to clarify two things. If we are going to provide feedback, I would suggest MnCHOICES 2.0 and add medication assessment back into the picture. I think that's a big deal. Two, I did not realize because it did not sound like the assessor's had the ability to have that much fluctuation for how the dash yes or no or if it was clear for choices of how to answer the question. I'm not sure how much an assessor's interpretation of the question matters, but maybe -- so thank you.

Thank you. Go ahead.

I think we are okay if we go a little overtime on this. I know that this is a real key issue. I want to make sure we create space. It will decrease our time to talk about this, so these are all trade-offs. I just wanted to say on the reliability and validity, everything they said. Those different data sources. I wanted to address the interpretation of the assessor. The validity. does it produce consistent outcomes based on the same outcomes and needs. Transitioning from 1.0 to think about how reliability works as an old tool, as we transition to a new one. We have a great opportunity now that that transition is behind us. A term we are using, a vendor that will make updates and changes that are easier, technically you to do. We are looking long term of the internal assessment and reliability of that assessment. That will continue, and we expect it to continue to accelerate since we aren't putting as much time and effort into maintaining the system. With any assessment tool, those issues are super important to pay attention to in the long turn from a systems perspective while we are also making sure that people and individual levels, if there is something that isn't as reliable that needs to be in the system, that the individual person has the opportunity to raise a concern. Out of file an appeal, contact DHS. I just want to say that's a key part of the success of the choices and a good assessment experience going forward. One of the balance points we have always tried to strike in the department is to make assessment Porter Lewis -- like it's one through five and make it more conversational. That does create more opportunity or discretion within that conversation that could potentially reduce reliability. That's a whole other complex conversation. We do want to hear from people individually or -- Paula Haw validity and reliability is something we are always going to be having to look at, study, makes changes on the margins, or the lifetime of the assessment for -- of which tool is being used.

Thank you.

A quick comment more than anything. I am the parents of an adult child on the waiver, primarily been using CDCS. She is now 27. I just want to comment about the discussion and remind us all that as a committee, we have been talking for probably a year and a half that with the waiver reimagined rollout, a key part of that and showing success was doing the side-by-side comparisons of every waiver user in the state, in the neighborhood of 69,000 people. That was always an important part of our work, is to do that side-by-side comparison. Old waiver, new waiver. I am just going to comment that this is a great many tests to do side-by-side and flush this stuff out. We need to have a reliable way to do that. Like you've already said, not relying on appeals. My other comment is clearly, a communication plan. One of the chain of marketing if you will. Down to the worker level in every county in. I would suggest working on that even further based on what we are hearing this morning. Thank you.

Thank you, Lisa. Pat? And if you could reintroduce yourself and your perspective, that would be helpful.

Can you hear me?

Yes. And untraditional waiver. It's a breath of fresh air, because this is something that I have been concerned about and I guess I have a clarifying question. I'm also curious. Another question. I am doing a panel on appeals with a few other amazing -- and Chad who has been --

Did we lose her? If you can hear us, we are unable to hear you. I don't know if you want to put your comments in the chat or rejoin. May be having Internet connections. Yes. I just wanted to be sure that we see the two Commons in the chats. 2.0 report. Counties are saying to just accept it.

Hello?

Are you back?

I am. Suddenly it's back. Anyway, we know technology is not perfect.

We can hear you now. Please go ahead.

Don't know how much was cut off. Self advocate. I have a son who was -- for mental health issues.

We did hear you say you were doing a panel on appeals.

Thank you. Next week and we are having our second state self-direction meeting. Part of this meeting from disability Law Center. I have been looking into this. A clarifying question, I have the form that was just put into the chat. Is a something you get from the regional resource specialist throughout the state in different geographic areas? I just want to make sure that I'm giving correct information myself.

Does someone from DHS have --

Would Sarah know that? If not, somebody can get back.

Don't know she would know that it's with this.

Go ahead of.

Can you restate your question one more time?

Sure.

Do they use the form you put in the chat?

Yes. How that works is when you go into the form, should switch category. This is about assessments, case management or services. There is a drop-down menu you can choose from, and then the question will be routed to the appropriate business area. Everyone uses that form. It's routed to the correct business area depending on what the question is.

Thank you. And the correct business area. Are we talking about the resource, the regional resource specialist?

Yes. If you want to talk to them, you can just select "I want to talk to my close was --

Okay. That's what I wanted to make sure, but I was giving the correct information. I know we are running out of time. You had mentioned about the percentage. I heard it was like 1% of people on medical assistance were doing appeals, roughly. Would you say, is that comparable, or just -- and I've asked different people for this information. I'm curious if you might have that.

Out have to ask. The numbers I've provided were -- how many appeals were specifically about -- we had a variety of appeals related to a lot of things. On the waivers or services that we provide, I'm not sure of a percentage of the whole population.

Thank you all. We have one more hand up. Are you able to come off mute?

I'm an individual on a traditional waiver. I just want to say that I don't know that relying on appeals is a really good measure of the success of the waiver 2.0. I would say people on a traditional waiver would be less likely to appeal periods a very intimidating process. He will speak before a judge, get hearing dates, and get a big packet in the mail from the county. I would say that people who don't have a lot of resources might not even bother. I guess that's what I have to say.

Thank you. I appreciate that insight. I totally understand. It's a tough process to go through. We are looking at the data. We are not just relying on the appeals and whether people -- have contacted us. We are also analyzing the data about the changes as well.

Thank you for the questions. Was there anything else that you want to share? Sorry, I see you have your handled.

Hi. I have a family member who uses this, but it also worked for the county. I have dual hat that I wear. At the county level, we aren't finding a lot of variation in this budget. What we do as a consult with another assessor to review the changes to see if there was something that may be is missed or was done incorrectly. If we still can't find it, we are reaching out to DHS, but we haven't had to very much.

That's really helpful. Thank you.

Thank you for sharing that perspective. Is there anything else you wanted to share? Speak I think we can introduce Darcy.

Great. Thanks everyone for their contributions, and we will go to the next slide. Darcy Thompson who has spoken to the group before and Ava Elsa -- who are going to talk to you more about the waiver reimagine survey.

Hi. Can folks here me? Just want to check my sound.

Yes.

Some of you may remember me from the meeting that I came to an August. Thank you for having me back. I work in the research and evaluation group with the disability services division at DHS. Also have my colleague Ava introduced herself as well. A quick visual description, I'm a white woman with white hair and I'm wearing a pink sweater.

Ava, do you want to introduce yourself?

Sorry, I was having technical difficulties with the mute button. Hi. Along with Darcy, I work for the research evaluation division as a research and evaluation specialist. I am a native Hawaiian woman with gray hair. I'm wearing a fault plat outfit for today.

Great. We can go to the next slide. Okay. We are going to talk about the waiver reimagine survey results today. Just to give background, some may remember this and some may not. As a quick background, previously, DHS partnered with the consultant -- two get feedback about waiver services from community partners, providers, service recipients, and families. This committee or counsel provided insight for the project, reached strategies and engagement methods to our surprise. A lot of people were interested in participating in those focus groups. Over 4,000 people wanted to participate. Had to limit the size of the groups and those focus groups to allow everybody to share those perspectives. 161 people participated in nine focus groups. Assembly information, results from those focus groups, were presented at this meeting in August. We are sharing with you the extent of that today with survey results. What we decided to do is provide an online survey about the same topics basically to give people an additional opportunity to provide feedback. The size of the focus groups was limited. What we did is we launched an online survey in May. We would be -- DHS announced -- Announced the service end. we are talking about the waivers, upcoming control. We can go to the next slide. I want to acknowledge some of the limitations that we have. There are limitations in any way that we ask people for feedback. We ask people to be really upfront about that. For this particular survey, it was only available in English. We want to make sure that -- it's important for DHS to consider other ways to get feedback from people who don't speak English. Outreach was somewhat limited for this particular survey. And also, we ask people to share it among their networks as well. One thing I would like to say is we had a high interest in participating in focus groups. Might want to give -- feedback about these topics. I will go to the next slide and then pass it over.

Thank you. We really did see that people like to make sure that DHS has their feedback. 404 people completed this survey. We found that the majority were age 25-16. 22% were in the ages between five and funny for. Or they responded on behalf of somebody else in this age group. 'S about a fourth of folks answering the survey who were answering either for somebody who was younger -- participants came from 39 counties in Minnesota. We will take a look at a further breakdown because this was the outreach was limited. We will talk about that in the next couple of slides. Next slide, please. Who responded? We will look at the top five counties. This compares the survey percentage to the percentage of people that live in these counties in Minnesota. A quick look across them. You can see that they are nice responses but they aren't on par with the percentage of folks who live in those counties. Going back to the limitations, something to take into consideration too. We have folks from 39 counties respond. What does that mean? What would it look like if we had representation from other counties as well? Something to keep in mind as we go forward, learning more about waiver reimagine. So, what I like to do in this best practice is first step, I like to know responded and what do they look like. This time I started with counties, but we also had a question which asked -- so we have three different options here. You can see that people using the disability waiver was the smallest percentage of our respondents at 9.1%. Family members and caregivers the largest at 53%. We had a fair number of providers with about 83%. Who were the providers? We had mostly case managers, other providers. We also heard from those with the County lead agencies. We had a number of supervisors and other professional staff advocates, MnCHOICES assessors, or social workers and a small number of folks who were harder to classify. Will you can see -- I will step back a little bit. If you were to only look at the results about overall how familiar you are with waiver matchup. When we ask that question -- and look at it without breaking down the groups we are interested, it's hard to get actionable information. The results I'm going to be presenting are broken down by those three groups we talked about. We asked how familiar you are with waiver reimagine. We can see there are pretty big group differences between people that were using disability waiver and family members or caregivers. Both those groups, they are familiar with waiver reimagine, but not as much as 85% of the providers. The providers are more likely to know about waiver reimagine than persons with disabilities, persons using a disability waiver, or family members with caregivers. You can see the breakdown. This is not familiar at all. Not Faith Miller is the great -- and these are somewhat or very familiar. There is a lot going on on the slider. Don't worry about it. We asked people on the survey to rank order their top three concerns for a list, a predetermined list about potential concerns. The concerns are on the top, concerned 1-2-3. You can see some pretty big agreement between people on a disability waiver, caregivers, providers. Every one of those groups are worried about the same thing: they are worried about the potential interruptions or changes to their service or their loved one. Their differences and how much they are concerned. Persons using a disability waiver are concerned. About 71% of them say it's their top concern. About 36% of family members or caregivers also worried about interruptions or changes to services. We have a fair amount of providers. About 28% are worried about the same thing. That is the top concern. The second in the column is a little different spirit you can see for persons using a disability they are worried about how the changes will affect the quality and type of care they receive. 41% of them said that's what their concern is. As we look at family members and caregivers, you can see that both groups are worried about a different thing. They are worried about changes to the budget for services. It's pretty close. It's about 35 and 11:30 1% for family members and then providers. That is the second concern, the top two concern. The third concern -- CDCS, family members and caregivers 43%, and providers 35%. I know that was a lot, but -- hope I explained that.

The next was what problems have you faced that make it Harder than you thought? People were free to write whatever they wanted. We took a look at those responses, read all of those responses, and tried to group together similar themes of responses. We are presenting the top themes that have emerged from -- each of these things as we go through the list. The top theme that came out of this question about what problems or difficulties you faced that make it harder than you thought. The top was around systems navigation challenges. People talked about how complex the waiver system is. They said it's difficult to navigate. In addition that there's not enough guidance of how to access resources. If there is guidance, that some of the information isn't super clear. The information about waivers is overwhelming and not always accessible. In addition, some people said they preferred direct assistance rather than being -- to websites or lists of links. The second most common theme that came up was issues around accountability and trust. Many respondents said they don't trust the county agencies and feel like they are unreliable or sometimes the decisions they make feel arbitrary. In addition, some said there was a lack of oversight from DHS that contributes to this issue. People reported feeling like County officials are gatekeeping access to services, that they may be denying -- or be providing conflicting information. In this theme, we saw some folks discussing Portu medication, and that there is poor communication in particular from case managers including delays, responses, and a lack of practice. The number three theme that came up was -- concerns of equity, and folks mentioned there were disparities in access based on a variety of factors based on specific service needs. Talked about inconsistencies in how the resources are advocated. A shortage of all five direct care staff. Insufficient training training for providers. Service providers -- some say that they lack appropriate training. Just that there are some service gaps as well. They say their specific needs were not met especially if what they need doesn't fit into an existing service or support category. The fifth most common theme that came up here were concerns about budgets and financial concerns. Menu feel that it's insufficient to meet their care needs. Budgets have stayed the same or decreased. We saw some respondents talk about administrative burdens. People work in administrator processes -- say it's a burden. A recent Dutch impact policy changes. These changes 2.0 -- have led to reduced services. I feel like the changes may have threatened to the independence and quality of life for people with disabilities. Some expressed concerns about the current path of the waiver system, and that it could lead to more people with disabilities towards institutional care rather than supporting independent living. In a way that -- whatever way they wanted. We asked how can waivers be changed to make things simpler. We will go through all of them anyway. How can the top waivers -- support for you? I will simplify the waiver process. That was a top theme. Respondents consistently expressed frustration with the complexity of every aspect of the waiver system, from allocation and assessment to communication. They suggested streamlining the application and approval process, minimizing paperwork, and reducing the frequency of assessments. Son suggested that shorter, more relevant assessments could improve access to necessary services. The second most common theme was around -- to enhance communication transparency. People want clear communication about processes, eligibility criteria and budget methods. Used to understand -- more effectively with people who use waivers. Any changes that are made, and clear channels for responding to questions about services. The third top theme was to advocate for self-direction. Many respondents said they want more control over managing budgets and making those decisions that best meet their needs. This common theme -- to increase quality of services. Some people highlighted a need for services that address mental health and develop mental needs. Respondents said there is a need for more training, resources, supports to help people better navigate a waiver system. Service providers and DHS. The fifth theme, cylinder question. Responding to expressed concerns about equitable access to services across counties. Again with those geographical differences we saw earlier. And then also, just that there are differences in funding and service availability in different geographic areas. Some also said there is a need for more consistent policies across different waivers. Differences create confusion and complicity. The six thing is to provide an efficient and accessible feedback. In addition -- this may sound obvious, but they want their feedback to be generally considered. More collaboration between service providers and people with disabilities and their families and caregivers. Concerns about budget changes. The budget cuts or changes that can reduce the support that they or their family member receive. And that there are concerns similar to the last question, concerns -- that negatively impact existing services and fundings. Those were our top themes when we asked how waivers -- the next slide back over.

There's a question that asked "are your cultural needs considered for disability waiver services?" You can see in the bottom left-hand corner the responses go from not all to a great deal. We can see that there are a little of differences here. Most people say their needs are being met. We have for persons using a disability waiver about 35% say my cultural needs are not at all or rarely being considered. Next slide. I will pass this one to Darcy.

Changing of their cultural needs were considered when planning for disability waiver services and supports. They can write in whatever they wanted in response to this question. Overall, we saw a mixture of responses. Some people acknowledged -- feeling like it was important to them. Or that it didn't apply to them. Some people felt that cultural needs are already respected, or that some people said -- needs like staffing or services ability. Others said the consideration of cultural needs would lead to better services for them, or if not for them -- next slide, please. Next step. We are going to talk about our next steps just for this survey. We will share this with the group. We will review the results. And result with your group as well as many others. The information that we got from the survey. In addition, of course, there will be additional engagement strategies overall as well. Talking about the survey. Just wanted to acknowledge that there are other engagement efforts going on as well. And that those strategies which will probably be informed by this group will be really important to making this presentation. It will be important to you the overall efforts as well. Just highlighting that this is one strategy we wanted to share with you today. Information we wanted to bring back to you. Of course, thank you for all of your input into this process as well. We can go to the next slide. We know that you have a lot more discussion to get to today, but wanted to -- in case you have questions. You love questions. Feel free to contact either myself. You can also email this email address. More things to get to today. I think I am passing back.

Thank you so much. A lot of information. As some of the people in chat acknowledged, a lot of alignment with what you found in the survey with what members have previously expressed. Nice to see that. I believe -- I am introducing Natasha. A quick introduction. MD Assistant Commissioner for -- disabilities and services. And glad to be joining you in my second meeting. I wanted to say also she/her pronouns. Visual introduction, I'm a white woman with light brown hair wearing a gray blazer and blue shirt under that. What I would like to spend the rest of our time today on if it's okay with all of you is walk through what we've heard from all of you in the August meeting about what's working and what's not working in the disability services system end. I want to walk through those outcomes with you and share how we have themed and organized your feedback, and then wanted to jump off into a discussion point about what we do with this feedback. Let me walk through some of the high-level feedback, and then we will open it to the discussion and comment to the meat of the conversation. As many of you may remember, we did a what's working disability services, community-based services, and what's not working. So, the way that we looked at this information is we took your feedback and took notes under your responses as individuals and grouped them into themes and high-level buckets. Identified the number of people who share that feedback or whose feedback fell into that theme or bucket. The first bullet, this is the what's working slide. You will see the access to services and supports is working for people, and nine people said something about that. It's just a way to distill information that makes it easier to summarize and convert into action or next steps. That's what we will be doing in a few minutes here. As you can see, what's working in the waiver system based on your feedback, access to services and supports. Some people identified eight people that they were able to live where they want. Four people indicated that the access to waivers -- quality of life. Three people identified that self-direction is working for them. Three people said their minimum requirements were met. Two said budgets and rates were working. Once said that collaboration was working, and one person mentioned that the streamlining or aligning across waivers is working. Another person said they know what services -- and what is available to access. That's the what's working slide. If we can move to the next slide, please. Now, we are going to talk about your high-level feedback of what is not working. Again, you will see the themes that more people set are at the top. Nine of you said that confusion in navigating an understanding services. Eight people identified a lack of access. Seven people identified budgets as not working. Case manager and consistency was a strong theme, as well as staff turnover. Other inconsistencies which we can detail come about inconsistencies but not each of those other categories. Three -- talking about the ableist system is not working, impacting the way services and supports are delivered. Lack of transparency. Outdated I.T. systems. Zoning rules. Preventing housing expansion. Local laws that may limit building of access to apartments or other types of housing situation. Language barriers. A lack of accurate information about life transitions, particularly if someone be turning 65 and has the possibility of moving to elderly -- next slide, please. This, I'm going to walk through this slide, and then we will turn it over to discussion. What I want to do is share our thinking in DHS. The themes that come off of what's working and what doesn't, probably not surprise us to any of you. It's pretty consistent with what we have been hearing over many, many years. The things that could be improved in our waiver system. We also know that the responses you are provided had a pretty good -- were consistent or tracked with the survey results that we just spent time walking you through. Because these aren't new or unknown problems, in our thinking waiver reimagined was designed to address some of the biggest issues. I want to share how we have thought about that, and why we made some of policy choices we made. That I will turn it over to you all to tell us where we might have gotten something wrong or where we might be off-base or not not thinking about something, or what you are concerned about. And want to lay it out for you, and then we will open it up and have a discussion about what your reactions, positive or negative, and -- are. Issue one that was that high-level theme that comes through from the feedback, that the system navigation is challenging, it's hard to understand our system. It's very complex. You have to work hard and spend time trying to figure out how to get through it. What we have done and are planning to do to address the issue is as you well know, one of the first phases of waiver reimagined was to create the same service options across the waiver. When we say common service menu, that's what we mean. If you are here, you have the same service menu as if you are using the DD waiver or this waiver. We are also working on creating a person portal. I think that's a bigger discussion than we likely have time for today, but we did get authority of legislation in a past session to create a portal for people to get access to information about their services. I want you to know that that is in the works. And we share our plans and how we are thinking about that, maybe in a subsequent meeting if that is of interest. Of course, individualized budgets which I know is probably the issue you are probably most concerned and care the most about. We are wanting our ideas to make the system simpler -- to move from a system -- sorry about the dog. [Dog barking] Where counties make decisions about how many resources to allocate a person. It may or may not be tied to their assessed needs are what they want. Currently, DHS does not have a lot of visibility into how counties are making. We know that some programs like PCA have very per scripted eligibility requirements. You have a X number of dependencies. You get a prescriptive number of services. On the waivers, there is a lot more flexibility which means there's also more opportunity for variation between different agencies and assessors. We think creating a methodology that produces an individual budget based on needs makes it simpler to understand how people are getting the services. Understanding there's a lot of concerns with methodology. I just want to share the thinking with you. Based on how spending was currently happening. That is that first issue. The second issue is lack of access to services or equity concerns. We know that people don't have completely equal access to services. We have seen disparities present across all sectors are also Dutch in the waiver system where people that have traditionally had less access, people's that are -- members of underrepresented communities or that people that represent different communities may be don't understand, have as much access, or successful in advocating for what they need and what they want. That's how we think about equity broadly. That's another reason that we think moving to a statewide methodology to determine an individual budget for waivers would address some of those issues. Budget and financial concerns. The same analysis, 87 different ways of deciding and determining resources that the state can set a budget methodology, a baseline for what people use with of course exceptions to that based on extraordinary needs. Issue four, accountability and trust issues, case manager and consistency. Staff turnover, quality of care support. That's a big bucket that is not fully addressed. A couple things that we have been working on is really focusing on and creating a team specific to a uniform choice and making sure that informed choice policies and practices and training are consistent across the state. We have been working on what our case management quality measures. A lot of qualifications for case management across waivers, and monitoring training and compliance. Case management is a very big topic. I want to acknowledge that's probably not a sufficient answer in terms of the whole systemic problem, but it's an important piece of context, that we are doing something in that zone because that does come out really strong. Okay. The discussion part for the remaining of our agenda. Broadly defined, the question or series of questions. Summary of just provided. What should DHS. In addition to what it's already doing. Another way to ask that question is what have we missed or where we not hitting the mark. Are the things that we should stop doing because they are not working, or are there new things that we should start doing to address those concerns in our waiver system? Those are the big three questions. I will ask -- to go back a slide so we have the issues back up, just so we are all seeing them together. What I would like to do is take a few minutes per issue. Here is some feedback from all of you. As people want to share, raise their hands, so we can call on people. Again, just to recap, what else should we be doing? What should we be doing differently from what we are currently doing? What should we stop doing that we are currently doing? And related to the first, the things that I start doing -- different challenges.

Natosha is inviting comments about the issue one. Lisa, I wasn't sure if you put your hand up now. Raise your hands to get on issue one. Lisa Everett, again parent. Thank you again for being here. Not necessarily on issue one. When you look at the last meeting -- what's working and what's not. Presure in reading this properly, but what was working was noted that access to services is working, and then you turn around and see the list that's not working. That's interesting in itself. I think that starts to become an individual situation, county by county situation. When I look at the access to services topic, I feel like we need to know more. Is it access to quality services? Is it not accessing because budget isn't there? You can take that one piece of feedback we are giving you and look at it in so many ways. I throw that out as -- you look at those users, the age of the person. I don't know. I am just throwing that out there. It's how do we solve the right problems. I struggle with identifying that. I will say this since we're supposed to start on issue one. Wants to come out with a common service menu. If a common service menu is going to solve some significant problems. I will be the voice of the people they continue to say -- what I like, leave me alone. I will just pause on that issue number one again. We are trying to change too much on day one which will go back to what I told Natosha in that breakout meeting. We need to start small and have built in success. Thank you.

Thanks. I think you have done such a nice job articulating our big challenge. For all of you as our trusted advisors -- every person that uses a service under the waiver has a unique experience with the system, with their case manager, with how things work and don't work. That lived experience is valid for that individual person, even if it's not the same expense their neighbor had or a person in a different part of the state. We have to try to think about how to look at our system in the big picture to make improvements. It's understandably challenging. The individual experience matters so much. I think that's something come about dynamic that you have named, and I'm glad you did. I think you spoke to it really well. We in the department will need your help as experts. How to find a balance between the individual situations and our system as a whole. It doesn't surprise me that access to services works well for some people and not for other people because of the dynamic side names. We have a lot of people accessing services in Minnesota. That's really important point. We already have a common service venue, so that was part of waiver reimagine phase one. That's in existence across all of our four disability waivers. The same types of services are available. I just wanted to clarify this. Who else wants to talk?

Thank you. I'm the parents of Charlie who was a 15-year-old boy with a DD waiver. I have also worked for the past 13 years with a disability population, mainly families, caregivers and parents, children and youth with special health care needs. . A couple things I wanted to say is I wanted to point out that Lisa put something in the chat that's very important to consider. That regards the survey. And the numbers and what the significance would actually be of those survey responses. We need to consider that. Many of the survey respondents anecdotally felt that the survey was flawed, in that it really only surveyed the predetermined outcomes. It seems to have an agenda. I didn't feel like it was serving what was important to us. I just wanted to point that out. It's important to have these critical conversations. Appreciate that. I'm going to -- I will answer all four issues with one suggestion. What they can do in addition to what they are doing. That would be to authentically partner with waiver recipients, the design, implementation, and evaluation of these policies and methods. It really feels like DHS is struggling to figure out how to partner at the systems level. Bringing the experts in. There best practices that exist that DHS could use to make this a better process as far as quality. That would be partnering with waiver recipients rather than going to the system experts. Designing this, and at the evaluation phase finding out maybe it was not the most -- the best way to go about this, or maybe we didn't come up with the best policy or method. On this going to reiterate: please explore ways to really partner with waiver recipients to do all of these things for issue one, two, three, four. Thank you.

Thanks, Tricia. I would love to hear more from you about -- you had mentioned best practices and the need for more authentic partnerships. Help me understand what we need to be present, or what concrete actions we should take to create a more authentic partnership. How would you evaluate whether we have been successful in that attempt?

And a follow-up question would be have you not heard or seen any of my suggestions in that emails, the links I have sense to anyone on that topic?

It would be helpful if you could summarize it for me right now.

Okay. There are Best practices around patient and family centered care that can be applied at the systems level two partner with people with disabilities, people who in this population would be waiver recipients. It starts with bringing people to the table to represent the population. It's really giving them equal power and decision-making, creating these policies. Is partnering with people of lived experience who can represent not just one or their personal experience, but people who also have a connection to the greater disability community. I would be happy to share again all the resources that I have. I'm not the Guru of how this works. There are ways we can do it. I think at the systems level, DHS could make a positive leap forward in how we are creating, how we are doing this waiver reimagine.

Absolutely. You certainly don't need to reshare. I appreciate what you shared already. I know the team is tracking those materials closely. I think I'm more interested in how you would define success in that partnership, from where you sit as a member.

Defining success in regard to authentic partnership would be equal sharing of the power to design, implement, and evaluate all of the policies, programs, methods we are doing. If we need concrete examples of that, we probably need to look at breaking down into how he partner in the design. What that would look like for us DHS. Doing things together instead of DHS doing things for ants two the population.

We should think about setting aside some more time in a future meeting to talk about that. Being able to meaningfully partner and engage with this committee. I am interested in -- as we can on what success looks like with that mandate from the statute. Just a flag that I want to make sure others have a chance to speak, and I appreciate the feedback you have given. That's something we should really focus on in our future agenda as well. You are making really important points.

I would appreciate that. Thank you.

Thanks.

I'm also the support planner for people who are using this supports option of the waiver. A little bit of background. I have been doing this work for over 40 years. The last ten years, probably doing support planning with consumer directed community supports. The late 90s, I was involved in this self-determination project. In Rochester -- was part of that, and that is CDCS grew out of the work that was done. I work with people of all ages and on all the waivers. The feedback I've heard for years and years and what we came up with back 25 years ago, we came up with the design for a service system similar to what we are talking about now. The things that I think DHS has correct is we are moving towards the common service menu. When we came up with this design called project foresight -- like late 1990s, early to thousands. We we talked about having one assessment, which you are working to have the one assessment tool. You have one assessment, you have an individual budget for each person, and then that person develops a plan based on their assessed needs and their budget. I think what's not working right now is you are talking about -- so basically, in order to direct your own supports -- I say this every time -- you need an individual budget, upland, and the services to provide those supports. Your needs don't change based on where you live. I think what's wrong, and I think numerous have said this, is that having a budget based on where a person lives is a mistake. A person's needs don't change. What I hear from parents all the time, especially -- this morning I got -- a budget from somebody that was $10,000, which was $10,000 less than previously. These are both living with their families. -- self-directed services being a separate thing. If a person has a budget, plan, the budget, making the plan and the services, they are directing their own support whether they choose traditional services or not. If you take that model and expand it, it would make sense, as long as the assessment tool is correct. I am a strong advocate for continuing on with the common service menu, the individual buckets, having one waiver and follow a planning model similar to CDCS. Can draw that out to you and -- because it's hard to do it's when we are doing things remotely. I do a lot of planning and facilitation. I can't be writing on a big piece of paper. A model to share to say what about this as an option? It's what I've heard from people for 40 years. We need to simplify things, and doing those three things simplifies things. The thing that has been done right is taking the county -- in the motto we came up with, the county's function was doing the assessment and providing some case management. We talked about having the county basically doing the assessment piece and having six separate servers coordinate our that's not associated with the county like you do with CDCS. Takes up one more step away from the county government and puts it in the hand of a person. They are working directly with that support plan. Thank you.

Provided some of that further back in time -- -- you articulate about a two budget structure. Talking about it, wanting to spend some time on it in the future. What would it look like to have one consistent budget. Will be asking all of you as a committee if that is an area you want to spend time on. From everything you shared with me and what the team has shared from past meetings -- your concern. Thank you.

I might have missed Kelly. Then we've got Pat. I apologize. There is a new Webex process. It used to be that I could tell the order that hands were raised. Nouns going here. I apologize if I missed anybody and I appreciate the messages.

I do appreciate you being here. To go things that they so eloquently stated. I know you've only been to a couple of meetings, but the themes you are hearing today have been said over and over and over. DHS would be taking this information that we almost stated from the very beginning of these meetings to say you can't base waiver budgets on where these need to be based, on the parishioners needs. We need it based on a person's needs. We have five different budgets for the same person depending on where they live right now. Many are not agreement with that. Trudged forward. Another thing I heard, and I know where working on this, but the beginning stages of having conversations about MnCHOICES 2.0, we heard about making waiver reimagines to the needs -- when we you shouldn't been doing that. Should've created the waiver reimagine first, then creating -- the needs of waiver reimagine. Really appreciate what was said. I've said that in just about every meeting. We are not partnering because none of that has been taken into consideration. We have a baseline flaw of our basic waiver reimagine foundation. Until we fix it, we are piling up blocks that are going to tumble. We also discussed of this back in March of the Senate hearing. These things have been heard. -- I would ask as you reimagine members. We have people powered in all of these decisions being made.

Thank you. I think that's a really good summary. Changes in the trajectory and spending -- reimagine. The fact that we haven't made big changes as an indication -- that we are 22, but it's more an indication that we have to work through the legislative -- the context of the individual two budget conversation. Appreciate that and thank you very much.

Thank you.

Been on CDCS since 2007 after life-saving surgery. On this waiver since 2000 before that. I'm thinking now, when I went on the waiver in 2007, my background was teaching. I really wanted to learn about this -- the CDCS program. I want to find out about it. After a while, we thought really, we need to set up this Council. I was asked to help do that with a few other people, including someone that did the trainings at Hennepin County. We were told by -- that she could get us a room and a phone line. It was before the computer stuff. We want to tell everybody else at DHS because many were not thinking that self correction was a good idea. We dealt with -- mental health issues and whatnot. I was glad to come back in the last few years. It felt like it was time to do more local advocacy with the waiver and changes that were going on and whatnot. I have this opportunity, and this National Center. I think there were about 18 states that were part of that during that year. The chair did a really good job bringing people together. Several months on this 18 month project was spent on talking about setting up just what we are talking about here. A participant Council of people that used CDCS. Spent several sessions on what it would be made up of. How often would we get paid? This was two years ago. It was finalized and supposed to go on to the next person, the chain of command. Not sure if -- as I followed up with those that were involved with it at the time, it was like "we have to talk about that further with other DHS departments," which I can appreciate because people don't work alone. Two years later, and I don't know, it's probably -- who knows, under some pile or disappeared or whatever. To be talking about how we can have participant interaction and mutuality which they've been talking about is the beginning. We are able to help create the agenda. Getting the attention of DHS and legislators saying that we need to get input. The states involved with that project. We did really well at the DHS part. For people that think we are not doing very well. That is just kind of out there. Others talked about this -- those with the lived experience that met, the -- trying to work with their stakeholders. How to get might in? I know people at the state so it wasn't like I didn't know anybody, but there wasn't like there is today, like how it work ideally? And how could it work better like this? Been shared already. And how important that is. Seems like it's really simple. For whatever reason it's taking a long time, may be the time it's going to take. Just wanted to comment on having a portal. If there was a portal, and -- haven't heard anything about it really. Would have to look at that as a future meeting. That could solve a lot -- not solved, but it could help with a lot of these challenges. People that are talking about how they don't want to appeal somebody, said this morning it's a lot of work, it's intimidating and whatnot. People think it's confusing trying to read through the DHS policy books and manuals, online and whatnot. If there was a person that could be called, even just 9-4 Monday through Friday, a live person that would send the calls -- but they could reroute the calls, take messages. There's a number of ways that could go, but at least there'd be somebody that would be there that cared enough to even answer the phone and be able to say "how can I be helpful" and whatnot? I think a lot of these issues that are coming up, that could put may be a more friendly face if you want to say that on the program. She's been behind me and supportive. I'm very grateful. After listening to people during this time and just knowing people out there -- want more and want to see change. Thanks for talking to us about this this morning. That's my comment.

Thank you. Very much appreciate that and the call out that Minnesota has been a leader in self-directed programs compared to -- our personal care assistants and program and CDCS. We should all -- and that is a product of many people over many years, including people with lived experience demanding and wanting something different. I don't want to take credit for that, but I want to name that we have a pretty well developed program compared to some other states that are just embarking on that endeavor or might be less further along the path. Having said that, we don't need to start from scratch. We do know that there is a lot of ways that we can improve our self-direction system in terms of access to information, helping people understand, what is or isn't covered in that service. Part of creating individualized budgets was to give people better access to self-direction overall. Again, naming and hearing the concerns about the two budget system -- and needs to come that training, education, bringing this into the future. I just want to share that that's from coming from. We recognize and see self-direction as a critical part as a future for Minnesota services. I appreciate those comments. Also, from a getting access to information perspective, people can contact the disability hub. There is someone who will answer the question, get you to the right person, or the contact form. I recognize that these are in the context specifically to get quicker access to a policy expert or person in self-direction. Maybe we can explore in future meetings where those two services or supports -- and what else we can add in terms of capacity and changing our approach to ensure we are responsive to those needs. Appreciate that. Who is next?

I'm going to call on -- I did also want to acknowledge that both of them shared the service menu link with people that Lisa had put in the chat a question about whether or not folks would be surveyed on the new menu to see if that is a success before rolling that out, and that Rosalie said, answering your question about defining success, but the people who are impact of most are developing the policies with DHS from the start. She gives a paragraph on people with disabilities being brought in before DHS and legislators make their agenda. I just wanted to call that. Then, Sherry, and Dr. Kate.

Sorry. I'm trying to get my video on but it's obviously, something's not quite right.

We can see half a screen, but we can hear you.

It's -- sorry about that. I want to comment on the first the system of navigation challenges. it is a pretty intense system. Case managers are burning out so fast because there's so much to know and less services out there. Going back to service navigation, one area that could be looked upon as the habilitation piece. Because of the access to services that is so limited in rural communities, the piece limits us to some service options. That is one area to think about. The accountability case manager. In a local area we have two case managers that made it three months and quit. Caseloads are extremely large -- dedicating the time to education with the families that we used to. Unfortunately, they are not always educated. The biggest issue I see is issue two. The access to services. To me at a crisis level, we can't access many services because there is no services available. Can't find a provider for it. Have families begging for residential services. They aren't fair. We have many people in crisis that we just can't get them some of the supports and services they need because of the lack of service providers. That's a challenge. boils down to staffing. I think these become challenging because the workloads. Our resources.

Thanks. Laid out a good list. Particularly on the case management aspect. Have made case management under the waivers of a very challenging job to be successful at because of how much we are asking. The knowledge of information, all the things we are expecting, and relying on case managers. That will directly impact what agencies are able to do. Case management and consistency is a point in our system. Giving people more power to navigate the system themselves. That comes with simplifying the system and getting better quality information. When what we need to do to advocate for themselves as one approach. The second prong is taking a look at the service management of our waivers. What do the rates look like, how do we address turnover issues? How can we be clear about what's actually doable for a manager in terms of caseload and what the expectations are. Really important.

Just one other comment quick. I know we have talked a lot about these choices. I don't know people understand -- taken case managers to complete the assessments has doubled if not triple. And how to book these choices is a very time-consuming thing. Are caseloads have not changed. Thank you.

We've got about 4:00. is you want to acknowledge that they have shared a number of links on engagement practices, so thank you for.

Sorry to interrupt. Listening to and talking about the comments, if folks could tell you what the top three things. Wanting to discuss -- that might help us a little bit, make sure that we are being responsive, and maybe also need to send out emails later to get more feedback. If you can put things in the chat for what you would like to see other points of discussion or information that you want from DHS in the next meeting, that would be fabulous.

Case managers give incorrect information or -- which is confusing and creates a distrusting relationship with a case manager which makes services understand -- for example I need nursing services. When you find a service which is supremely unhelpful inputs -- on the resource fund or case manager. She does need more stress per she is currently promoting all this and just has major surgeries.

Thank you. Thank you for sharing that periods really good example -- for case management challenges.

I am seeing some great inclusions. I just want to be sure that we give everybody, may be as we go to the next slide, on opportunity to give their input. You all have the slides, so you can take your time and think about it. We will look at the input on the top three issues for that December meeting. Test want to call that the December meeting is slightly earlier due to the holidays. The Decembers meeting is -- wanting to engage with you. Emailing those to us after this meeting. Is there anything you want to say in closing? What I want to say is thank you to all of you -- about how these meetings go in the overall waiver reimagined. Our legislative team about the way we look at this and how we move through this. It's not just me paying attention. Getting this right and to a place that is more responsive to your feedback is very important to me. And two -- thanks for your input. We will keep having conversations, getting feedback, sharing what we are thinking, what we might be able to change, and what we might need legislation to change based on your feedback. We appreciate your input. Have a great day and watch for some additional emails for our December 12th meeting.

Thanks everyone. Sincere thanks for your input. For those of you who didn't share today, remember that you can via the email, and we will include a question about the top three concerns in the meeting survey that will be sent to everyone. Appreciate your time. We will capture all these, so I will hang on to make sure we capture everything in chat to bring it forward for future planning. Thanks everyone, have a wonderful day.