Personal Independence Commission

September 8, 2003

Missouri State Capitol
Jefferson City, Missouri
TRANSCRIPT OF MINUTES

MS. DUNHAM: Good morning. We'll call the Personal Independence Commission to order. Welcome, everybody. I would like to do introductions just so you know who is sitting up here and start to my right.

INTRODUCTIONS: Good morning. Juan Samaniego, St. Louis, JoeMaxwell, Lieutenant Governor and Co-chair, Wendy Hays, Learning Opportunities. Anne Deaton, Department of Mental Health, John Solomon, Neva Thurston, parent, Martha Hicks, Sandra Levels, Medical Services, Ron Vessell, Jr. Vocational Rehabilitation, Anna Jackson, Robin Reed, Nancie McAnaugh, Bill Foster, Senator, 25th District.

MS. DUNHAM: I suppose I didn't introduce myself, Kirsten Dunham and I work with Paraquad in St. Louis and Co-chair of the commission. On our agenda we have approval of minutes from July 14th meeting. They had been sent out awhile ago. I don't know how many people printed them out and brought them with them. I don't think it was sent with the latest packet of information we got last week. We'll postpone the approval of those minutes until the next meeting so we've had a chance to resend those. Co-chair reports.

LT. GOV. MAXWELL: Thank you, madam chair. I wanted to make a few comments. I want to personally thank the directors of the departments and the Governor. As you all will recall, we have spent some time since April, kind of making sure that this was the format that the Governor continued to support for resolving issues presented not only from the Olmstead decision but also with the grant that's out there as well as other issues that those with disabilities face in our state. The Governor said yes, he wanted us to find a way to make this work and continue to lead the process. Since that time, we did support this commission supported the charter and Kirsten and I served as the sponsors on the charter. I want to thank again the department directors and other agency staff for their hard work. They have come together. They took our charter and today there will be a presentation. I'm delighted in Lois' work. Lois has been working diligently. Thank you, Lois, again for this. What I want to reiterate is that as a commission, kind of remind us where we are at this stage. We chose through a process to establish what we felt was the priority of specific recommendations from the original task force group some 70 recommendations and we've added a few. We said, okay , these are the ones we think upfront are manageable, can be done and should be the priority. At no time has this group ever abandoned the other long list of items and recommendations. We then began a process to try to figure out how to implement change in government and realized that we had to find a way to bring the departments more into the process. That's where we came up with the charter. This commission continues to be under the application for the grant, continues to be the advisory group for the grant and what I hope that we can do today is one, continue to focus on the reality that we are that -- we do have that responsibility under the federal grant. Two, to remember that our job now that we've signed off and gave the agencies and the department directors guidance through the charter that we're to oversee that and to require reports back, to make sure that once we have established their timeline for accomplishing those first set of priorities, then our job is to be their sounding board, to make sure that they have a group that is responding yes, that's what our vision was. Yes, you are meeting those requirements and to require -- to make sure that they are meeting their own self-defined timelines. The other thing that I think this commission needs to remember, though, is about what we said would be the beginning. It is not the end. Simply accomplishing that first set of priorities does not relieve us of our responsibility nor what the Governor's expectation is. Kirsten and I will be meeting about how we will help present to the commission that set of recommendations that we adopted at our very first meeting and how we will set our next round of priorities, what we will accomplish, how we will move from this charter to the next phase. We have a responsibility to help organize that and help set a direction. So as the months unfold, our goal isn't just to make sure that this round of priorities are accomplished. We have to begin to put in place the next phase so that as those come off the block, new ones replace them so we keep moving forward and we don't have any gaps now that we have got a system in place that we continually are moving forward on those recommendations. The other thing I would say as a Co-chair is there's nothing wrong if we look at something and say that might have been a good idea back then but it makes no sense today based upon new information or the departments have already accomplished that without us or that's just, you know, wrong heading now. While we're looking at these, as we go back and look at all of those recommendations, there's nothing wrong with throwing a few out or adding a few in so it will be a time to rethink, if you will, the direction the state should go in and what those recommendations should be. So I don't want anybody to think just because the commission voted 76 ideas that we have to stick with those. It was a great place to start but all recommendations should remain fluid and as time changes, oftentimes so do recommendations so we ought to make ourselves go back through that process so that we have the latest priorities that this state can have when it comes to allowing consumer-directed type care and removing barriers to those in our communities with disabilities. So we hopefully as the Co-chairs will help you, we'll try to lead us through that next round so that as these priorities that have been established, are worked off the table, we're well prepared to present to the departments and the Governor the next round of activities that this state should be focusing on. I do hope that we can remember as a commission it is a partnership, recognize the work of the department directors and their staff and also try to help them have a good experience on the first phase so that they are well prepared and anxious to do the second phase within the action plans. I think we have learned as a commission that we just do not have the resources. Grant money doesn't provide us the resources and because we aren't a decision-making authority, we can't make anything happen without the departments moving those items forward. So we have to remember how we keep those relationships going and I am again very thankful of the Governor and the meeting that when he called his directors together to reemphasize the importance of moving these. We're very thankful for the executive branch. Our job is to set the priorities and help facilitate the conclusion of those priorities as a commission. So that's kind of where I see us going. I'm very excited about today. We have some new folks and I think Kirsten is going to introduce them.

MS. DUNHAM: I do want to welcome some new members to our commission. Martha Hicks is here today. She introduced herself earlier and we're so excited to have her here for many reasons. One, we really want the senior community to be represented on this commission and make sure that the issues that affect them are voiced and listened to and considered. And also you may not know, Martha has already had an impact on our commission's work. She was part of the work group that helped develop the training curriculum for the informed choice providers and we all really appreciated Martha's input because she was a teacher and so she keeps us on task and she makes sure it is short, clear and concise and understandable. We really appreciate Martha's joining us and willingness to serve. Welcome, Martha.

MS. HICKS: Thank you. It is so nice to be here.

MS. DUNHAM: And also we do have a new member, Bobette Figler. She couldn't rearrange her schedule to be here today but she's been a long-time disability rights advocate from the St. Louis area, she served on the Governor's council of disability, and we'll very much look forward to having her here. And also at this time we would like to do a special presentation.

LT. GOV. MAXWELL: Thank you, Kirsten. Kyle is right on cue, wasn't he? I appreciate that. Kirsten and I would like to recognize a member who is leaving -- and Greg Vadner is not here today but we know Greg is leaving, but I gave him something and we recognized Greg. But today we have an individual who has served faithfully, diligently on the commission since its inception who is now a retiring member of the commission and that's Mary O'Brien. Yes, it is you, Mary. And Lieutenant Governors have the ability to make and declarations. Governors proclaim. Legislators resolve, Lieutenant Governors declare. So we have declarations.

LT. GOV. MAXWELL: I have a Lieutenant Governor's declaration and it is for recognition of what Mary has been able to provide and help. I would like to take the time to read at least a portion of this and then I will go over and present this to you, Mary. Whereas it is with great pride and sincere admiration that the Lieutenant Governor wishes to otherwise an extraordinary Missouri citizen who has taken an active role in community and governmental service and whereas Mary O'Brien has served as a dedicated member of the Missouri personal independence commission where she has been a very active member of the Olmstead stakeholders group and has contributed research, personal experiences and recommendations through the Missouri Olmstead commission meetings and work groups. Mary attends every OSG and Olmstead commission meeting unless she is in the hospital. She has had the ear of national and regional HCFA and OCR staff, the national consultant to ocr and Missouri state agency director. Because of the perspective and personal experience that she offers as a mom who and-a-half gates the system everyday. Whereas Mary is an active member of adapt St. Louis, she is the co-contact for Missouri and runs the e-mail list for adapt St. Louis, writes for the newsletter, organizes and gives training and Mary gives her personal experiences and lessons, teaches others how to work the system, this is done in trainings and one-on-one peer support. Mary has helped countless parents to figure out the right questions to ask, connect with community resources and use every possible advocacy strategy. Mary does not work out of the home whereas she is the single parent of a daughter, Mave, who lives at home and coordinates all of her care, physician appointments, community outings, personal attendant, case management and advocates on her behalf for services and support. Whereas with adapt, Mary has participated in helping Washington, D.C. From selling buttons to setting policy goal. As a full time mom of mauve, who is blind and has mental retardation she knows the gaps and barriers of the system. Mary lives with a disabilities herself and sees the big picture and sees how Olmstead is the door jamb of the resolving door for personal with disabilities. Mary O'Brien is commended for her dedication as an advocate for those individuals and families who experience daily the chAllenges of being disabled. Set in the city of Jefferson City in my office, Joe Maxwell, Lieutenant Governor, on the eighth day of September 2003. Thank you all for allowing me to do that. You get the authority to declare, you like to do it every now and then, you know. I will turn it back over to you.

MS. DUNHAM: Thank you so much. I have a feeling that Mary has promised not to disappear, so we will have her expertise around. One final thing I wanted to mention in my Co-chair report is that there is a lot of national attention to the federal legislation, Mi Cassa, Medicaid community attendant services and supports act, and I just wanted to make sure that everyone was aware to signify how significant this legislation would be for the disability community, disability rights advocates and people with disabilities around the country are currently on a march called the rolling freedom march and they are marching from Philadelphia to Washington, D.C., the whole distance, to raise awareness and support for this legislation that would make community services an entitlement under Medicaid and also help our state because it would provide some enhanced federal match for home and community-based services and certainly that's an incentive for states that are experiencing tight budgets. There will be a rally to culminate this march in Washington, D.C. On the 17th. This is expected to be the biggest disability rights rally since the Americans with Disabilities Act initiative and also I will mention we'll have a rally not quite so big in St. Louis as well. So I just wanted you to be aware, please contact your congressman, congresswoman and Senator. Currently congressman clay is the only Missouri delegate who has signed on as a co-sponsor. We're working on the others. I just wanted to make sure that everyone was aware that it will impact our work and could help make it easier for us to achieve our goals. At this time we have a presentation from Lisa Jackson and we're ready for her now.

MS. JACKSON: Hi. My name is Ann Morrison and I'm a long friend of Lisa and she's asked me to read her testimony for her today. Hi. My name is Lisa Jackson, I'm 19 and live in west plains, Missouri. As a recipient of pas services through Ozark independent living, west plains and under the direction of Cindy Moore, I have come today to support this program. Pashas helped me and many other people after our American dream, the right where we want and the right to choose the services that we want and who provides our support and services. These decisions are ours to make through the special program called pas. There are many ways pas is helping me achieve my independence, such as I'm able to live on my own and have my own apartment. I have transportation when I need it. It is wonderful to know I can go to the grocery store and get groceries any time I need them. Like any girl, I can go shopping, but I try to keep myself to two or three times a month. Experiences like this have taught me to budget my money, which is a worthy chAllenge. Also and I'm proud most importantly I'm able to go to doctor's appointments and pick up needed prescriptions on time. Pas enables me to do the same things everyone else does. I pay my bills, buy groceries and go shopping at places other than Wal-Mart when I have time and money. I meet friends for lunch, go to the movies every once in awhile. I love to bake but it was hard when I couldn't get around in the kitchen. Through pas I now have a special attendant who helps me live my culinary dreams. I turn on the radio, start mixing ingredients and bam, come out with a masterpiece Emeril would be proud of. In the kitchen I can't do everything but for the tasks I can't do I'm a direct. Actually I think I'm a better director. But I do help if I can, I'm not shall spoiled. I graduated from west plains high school in the class of 2002. I was accepted by Southwest Missouri State University. I am fortunate enough to continue my education through southwest Missouri state university today. I am taking on-line classes and soon will be joining my fellow classmates in the classroom. Thanks to vocational rehabilitation I am getting an education so that I will be able to get a job I enjoy one day. Without vocational rehabilitation I would not be able to continue my education to the fullest. This program provides for me the comfort and disability of knowing that I can and will be able to pursue my career for the future to come. Currently I am pursuing a degree in graphic arts and accounting. My director has arranged for special accommodations that meet my individual needs. Financially it would be impossible for me to even consider college without this program. Now I have the chance to overcome all impossibilities and make opportunities as possible as they will ever be. Thank you for making sure our Medicaid funds are spent wisely. We testify and you listen. Today you again have the opportunity to make the right choice. Thank you for everything.

MS. DUNHAM: Thank you, Lisa. I know you have testified before legislative committees and I urge you to keep speaking up because I think you tell an eloquent story. So thank you. Are there any comments or questions for Lisa? Thank you so much. We're now ready to move on to our presentation of the action plan.

MR. SAMANIEGO: Thank you for coming all the way from west plains and sharing the story. And sharing how pas can make a difference and how the program can be designed to assist for an individual to be integrated into the community and how it is appreciated so the rest of us can have a better understanding because without it, from what I understand you wouldn't have had the opportunity you do now in order to continue with your education and become a full participant as you are doing. So thanks for taking the time and sharing that.

MS. DUNHAM: Thank you, Juan. We did e-mail out the report from the special team to the listserv that the Governor's council has, so hopefully everybody got a copy of that in advance. I'm going to invite Lois to come forward and I wanted to second the Lieutenant Governor's appreciation for the work of the special team. We gave them a pretty short timeline to have the summer with a lot of other activities going on, and we just really appreciate that they are sharing these common goals and they are coordinating their efforts, they are communicating and that we're coming out with a good action plan to move this forward, so I think it is a very exciting opportunity and I want to thank Lois as well as Richard Dunn, Nancie McAnaugh, Diane Pool, Linda Lobuck, Dorn Schuffman, Steve Roling, Sandy Levels, Mary FAllen and, Ron Vessell and JeAnne Loyd who have all contributed to this point.

MR. HELDENBRAND: As we make this presentation, we'll have the department directors to come and sit and actually go through the presentation with you and so that one of the things that you stressed in the charter was that to do away with the department silos and actually for the departments to see the departments working together. So as we walk through the slides that you have before you, we have them available and additionally, they are going to ask some other members of this team to make some comments and walking through with you pieces of the action plan. So what you have in your handouts is a slide presentation. As we walk through it, it starts with the charter that was approved by the PIC commission and so you ask this work team to actually recommend a lead agency including roles and responsibilities and lead agency will pull together other agencies to accomplish the objectives.

LT. GOV. MAXWELL: Lois, can you wait one second, please, because you are saying some important things and they are trying to find the documents. I apologize for jumping in, Kirsten. Everybody have a copy? Do we need copies? The room was not conducive for us to put the power point up. We hoped to have the power point. So that's why you are going to have to look at it on paper. Now, Lois.

MR. HELDENBRAND: I'm on the second page of your handout and I will try to go through them -- we'll go through it slowly enough so that you can follow. The way the team worked is the department directors led the discussion and we looked at the charter. The charter references back to the executive order for the commission. We looked at some of the committee reports and then went through and actually followed to proceed with making some recommendations and developing an action plan around that. We actually tried to choose a few actions that were doable and very succinct. As you see the action plan you are going to see there are lots and lots of tasks that need to be done to accomplish even one of those actions. We did not list all of that. We've just listed the actions for you to see. So the charter is on page 2. It starts out. It is to recommend a lead agency, including roles and responsibilities and again the lead agency will pull together the other agencies to accomplish the objectives of the real choice grant and the 11 PIC objectives and to develop a common application to accommodate various entry points and to develop a plan of action that includes a list of key actions that can be phased in and include pilot sites and timelines for testing any proposed system improvements. So the response to that, which you have already seen and approved, is that the lead agency, the responsibilities of the group recommend to you the lead agency will convene the other agencies, conceptualize a model or a system and how it could work, identify resources and the limitations and report to the PIC and partner agencies. And this is exactly as Lieutenant Governor Maxwell summarized in the remarks. This is how the agencies have been working as they have developed their action plans. So what you will see with the action plans is a very integrated set of actions. And as we go through this, since we have several agencies to hear from, if it's possible that you could jot down some of your questions and we can go through the presentation, then give you a chance to discuss with the departments if you want to or ask questions about the action plans. That would work to get us through it a little quicker. So then the lead agencies, the key areas then versus having one agency trying to pull everybody as a lead, pull all the agencies together around all of these issues, the departments recommended in identifying some key areas. Again, the commission has already seen this and approved of this. One is personal care. One is transition from institutions and on personal care, DESE or Voc ReHab will take the lead on that, transition from institutions, mental health and then this one we did some revision based on Kirsten and Lieutenant Governor Maxwell's recommendations. A consumer options based on needs, choice and capacity including diversion strategies and department of health and senior services will take the lead on that and then of course real choices grant department of social services would take the lead on that. And then this brings us into your next slide, would be the areas and the way this is organized. We got statewide actions that were already completed in this area. So we went back and looked at the PIC objectives and linked the PIC objectives with the actions that have been completed and also proposed actions on the action plan. And if we are correct, either what's been completed or proposed actions would address ten of the 11 PIC objectives. The only one that it doesn't address is the very first one which deals with evaluation. So that's how it is set up and then what we'll do is we'll have each one of the agencies who is the lead actually take the lead today in talking with you about the statewide actions that are completed and explain to you the proposed action plan for that area.

LT. GOV. MAXWELL: Just as a reminder because we have some new members as well. We set out a priority. We took the original recommendations from the previous group and then we picked 11 priorities. Lois is referring to that set. That's where we wanted to begin. That's what was in our charter to the agencies to begin working on. So when she refers to ten of the 11, those are the ones she's talking about, those were the set priorities. My only comments I said okay , once we get this action plan up and going we've got to as a group begin to talk about what the next set will look like. Because they are now going to present what their action plan is for 10 out of the 11 and the 11th one is evaluation which we've got to somehow come up with a process for. We're still thinking about that. That hopefully will put it kind of especially for the new folks.

THE SPEAKER: Do everyone in the audience copies?

MS. DUNHAM: We did pass some out. Hopefully there were enough for everyone. Did everybody get a copy? Anybody need a copy for the commission members? You had an action plan with a chart and behind it was the slides. Thank you for your patience. We wanted to make sure everybody gets a copy. I think we had a couple of different formats so people aren't sure which one they have.

MR. HELDENBRAND: Ron Vessell.

MR. VESSELL: We're going to talk about personal care first. I guess it would be nice if I turn that on. As you see, there was an intent to design a common application, if you will, universal application which involves, of course, the gathering of information as well as accessible process and I'm going to let the person whose name appears as the responsible person describe exactly what we've done.

DR. LOYD: JeAnne Loyd with vocational rehabilitation. Actually some of the work had been done prior to this committee meeting and it was performed by the TBI group. They had identified somewhat they called a TBI profile information where they had identified some common data elements that all agencies gathered when someone comes in and makes application for services at their agency. We've put those together, along with some key questions that are usually asked by all agencies about what types of services that a person might need, what types of services are they seeking from the state agencies and what types of things that they might need help with. So we're looking at a form that would have all of those common data elements in that. Then looking as it says, the authorization to share that information with other agencies, having on the flip side of that again a form that has already been approved and in use by state government and that is the authorization for disclosure of consumer medical and health information. So we're trying not to reinvent the wheel here but to use processes that are already in place and not duplicate that effort that's already been done. Once this information has been agreed upon by the state agencies, we are looking to utilize the pilot project that's already in progress to expedite the process. And that is the project success which is a grant that is in use at the Columbia Career Center and has all the required state agency partners and also has consumers seeking services as participants. So that will be our group that's already in use and we hope to pilot the project there in the near future. An outgrowth of that would be information to determine eligibility. We would like to take that a step further and that is looking at the common elements for assessment that all the agencies use and identifying what those common elements are so we can share that information again via the use of this form that we're developing to eliminate the duplication of effort by state agency partners as well as having to put consumers through the same assessment over and over again as they seek to access services from the different state agencies. So we're hoping that will eliminate duplication of effort on both ends of the process for those participating.

MR. HELDENBRAND: To make this easy for those of you who are trying to follow. On page 3 of your slide presentation, for personal care under that area, the statewide actions that we noted and I'm sure there are more than what's listed here, but that are completed and referenced to the PIC objectives would be background screening on direct caregivers.

MR. HONAN: Some folks have two and some might have three. You might want to describe the slide.

MR. HELDENBRAND: We're trying to save paper on some of these handouts so that's why some were three per page. It is the personal care slide, the very first one, and they are organized by the statewide actions completed and then bullet points on the major actions that then correspond to more description that's on the action plan document that you have. So the statewide actions completed on that one were background screening on direct caregivers and that is PIC objective no. 6, consumer training on managing attendants and then I have noted under that independent living centers and then DMR-DD, consumer and family training. Then on the next slide under personal care you will have two slides for each one of these areas, the team recommended action which gene know and Ron talked about, is linked to your action plan and there's three areas. One is information to understand the request for assistance. Again in parenthesis we've linked those to PIC objectives three and nine. You have got a common general information form, information to determine eligibility, then underneath that is financial, medical, functional, clinical and psychiatric assessment and then an authorization to share consumer and client information and that JeAnne referenced is the common authorization for release of medical information which all the departments are using that and that is being implemented right now. So you will see a description on your action plan. We included for you so you would have a little bit more information to understand some of what the agencies discovered as they were working with this. Is the agencies right now on their application forms, many of them, they have a little bit of information that's the general kind of information that's going to be needed to understand what kinds of assistance a person needs and then also there's some information that would be more functional in nature and things like that. So when we broke that down into kind of three stages, that's what JeAnne described that we'll be working with so the agencies can then begin to use one common form. And that's again the general information, just to understand, you know, where a person needs to get assistance and then the program eligibility and then again the authorization to share information between the agencies. Eventually going to and automating that. So on this action plan that you see, you have got a description of the action, the deliverable so it is clear when you get additional reports from the departments, what the deliverable is, a person who is taking the lead and then a due date, the resources existing and/or needed and then measures if they could be identified at this time. Okay . Then the second area is transitions from institutions and the lead agency for that is mental health and your slide would point to statewide actions to be completed. What you have on your slide is state agency staff trained on informed choice and Olmstead, PIC objective four and five, state agency appeals are part of the choice process, 7, and then reporting state agency waiting lists, PIC objective 10 and then a note that approximately 100 persons have transitioned from nursing homes to the community to date. And then the second slide will be team recommended actions and that will sore respond with the action plan. Dorn.

MR. SCHUFFMAN: I'm Dorn Schuffman and I'm the director of the department of mental health. I'm going to actually start with the second slide, the one that says team recommended actions which, if you have the three items with three slides on them, it is page 3 and it is page 5 on the other one, the top of the page. So either the bottom of three or the top of five depending on whether you have two or three. Let me just begin by talking about the process a little bit. We recognize the department directors that, you know, if anything is going to get done on these issues, it is going to take our doing it as the Lieutenant Governor suggested, the commission really is put in place to make sure we do it, I guess. But it is us that has the responsibility. We have the responsibility. So we've made a commitment to each other to work well on these items and as has been described, each of us is taking the lead on one of the four areas. And we found that when we called together people when we were asked to call together people, we were calling together the same people. We only have a limited number of staff so many of our staff were working on the same topics, on the various topics together but one of the agencies is taking the lead to make sure that the work gets done on that. The area that the department of mental health is taking the lead in is transition from institutions and we went back and looked at the original Olmstead commission report which have the 70 some recommendations in it. If you look at that, there were three major areas of responsibility that relate to this one item of transition from institutions. One was developing a process for transitioning individuals with disabilities who are institutionalized and eligible for community treatment. That was one area that they were supposed to look at and then the other two that are relevant we're recommending modification or changes to existing community programs to enable people to live in the community. The third was to look at ways to expand community programs. All three of those are relevant to transitioning people from institutions to community systems. And if you look at the original Olmstead report, I didn't count the number but probably most of the 70 some recommendations fall within those three areas. So this is a very broad area of responsibility. What we did was try to begin by narrowing it down just a little bit to pick some of the areas we thought were the most critical. If you went back and looked at the original Olmstead report, under the developing process for transitioning individuals from institutions to communities, under that general topic, one of the main concerns that was expressed in the Olmstead report was that people didn't have funding to make that transition from institution to community setting. So that was one of the things we pulled out and said that's a key thing for us to look at. When you looked at the other two items which had to do with either improving existing community-based programs or expanding community-based programs so people could live independently, there were a whole bunch of things in there. It focuses on housing, focuses on unemployment, it focuses on transportation and then on all the different kinds of services and supports that are needed to enable people to live independently. Out of that we pulled just a couple of things to begin looking at. One is what are the processes that we're using and how are we documenting those processes for assessing people who are institutionalized, our process for assessing their ability to move and live independently? What are our processes and how are we documenting that we're following those. Then the third area was looking at people who have been considered high risk for community services in saying what are the barriers? What's preventing people who somebody is saying, you know, either the community is saying we're not sure we can support them or the institution is saying we don't think they can go. What are the barriers that are in place there? So those were the three things we those to focus on. To develop funding to help people transition from institutions to communities and identifying what are the barriers for quote, high risk individuals and what are the processes we're using and how do we recommend that we're actually assessing people to make sure that they are ready to move into community settings. That's only a part of all those different issues that are in that section of transitioning from institutions to community so we recognized that this is only a beginning of the topics that we need to bring back to this committee. Even on those topics, when you look at our work plan you will see that we've picked out just a few things to start working on. So we have a major responsibility here as the coordinating agency on this issue because this is kind of one of the fundamental issues, how do you help people move from institutions to communities. You will see as we look at it, we recognize the breadth, we picked a few things to focus on and you should expect us to be coming back to you probably shortly with additional areas and additional things to focus on. So that exhausts my expertise. So what I'm going to do in terms of taking us further is to ask either Ann or Kay , I'm not sure how you want to split this up, talk a little bit about the things that have already done, the first slide, the statewide actions that have been completed and then a little bit about the specific action plans. So Ann and Kay .

MS. DEATON: I think Kay and I are going to do this together. The first thing I want to do is to commend the process again. The state agencies working together. Every single state agency came to the meeting that DMH called and it was, you know, even in these times of limited resources we realized that we could work together more collaboratively to reconfigure existing resources and that there were opportunities here for us to garner new resources in a collaborative way so it was a very good meeting and I want to commend the process. In terms of looking at the slide that has statewide actions completed. All of the state agencies have done some form of staff training on informed choice and Olmstead. And I would just give you an example from the department of mental health where DMRD did that through a circuit. Kay and I actually went around to all the regional centers and Kay informed people at the regional centers of this information. They received packets of information that included sheets that people have to sign at the Hab center and at the regional center that they have been informed of choice. There were instructions to case managers and we even included information on Olmstead itself. So that's probably not atypical of what all of the other agencies also did in some form or fashion. All of the state agencies do have an appeals process in place. So that is completed. Reporting of state agency waiting lists, the state agencies are doing that. I actually at this meeting given you periodic report of the waiting lists that DMH has and I think you may be aware that there was legislation passed last session where more formally certainly within the department of mental health we will be keeping waiting lists and laying out a plan on how to eliminate those waiting lists for both Medicaid and nonMedicaid certainly with MR-DD. And then finally reporting on persons that we are making a concerted effort to transition from nursing homes into the community and these numbers are -- is Ron still here? Are from Ron. I think that I understand that most of these persons are below 65 years of age and certain with disabilities. Ron, do you want to add anything to that?

MR. VESSELL: No.

MS. DEATON: So we think these are strong steps and our system has these things in place. Then we were eager to move on to some of the recommended actions and Kay will talk about those. But we've looked at changing our waiver within the department of mental health, MR-DD and we're going to be working with other agencies and Kay will talk about what we think could be changed in the waiver. In terms of barriers to communities, the whole group decided, all the state agencies at the table, that housing continues to be an enormous barrier. Kay will talk to you about first step we're taking there and then in terms of improving and documenting the processes for assessing the appropriateness, we have some new policies in place within the department of mental health for the habilitation centers and we're also, which is in your narrative, but also we're talking about materials that we already collect, like the MDS, the data set, that nursing homes already collect. Are we gleaning from that adequate information? There may be information there that could give us directions on persons that could be in the community or how to avoid nursing home admissions to begin with. So both on the Hab center side and nursing home side we're looking at what we can do more there. Kay , would you like to talk about some specifics?

MS. GREEN: Hi, I'm Kay green. I'm with division of MR-DD with department of mental health. First of all, I want to talk about the service that we will attempt to add to one of our waivers. The division of MR-DD actually operates through Medicaid home and community-based waivers. One of those waivers includes residential services. We call that the comprehensive waiver. A service that CMS, the federal Medicaid agency has allowed states to adjust within the last couple of years is a service that's called transition services. What this service will do is to allow a state to have a service in its waiver that can pay for startup costs. Now, it can only be -- the service can only be accessed for persons who are transitioning out of an institution. So the idea is this particular service could cover, for instance, security deposit that's required for rent if the person needs a place -- if they were going to rent a home or an apartment. It can also pay for security deposits that might be required for utilities, telephone, electric, gas and so forth. In addition, it can cover some household type expenses that are needed as one-time startup costs. Perhaps they need a bed or some minimal furniture or some cooking utensils and so forth. So items like that can be covered in this type -- with this type of service. Right now DMH does have to pay for this with our own money for either using gr or we're cobbling together and we're finding donations from groups and we'll continue to find donations where we can to help people with startup costs but we will also now have the ability, once we get this service out to our waiver, to fund it through the Medicaid program and take advantage of the federal financial participation. We'll have to make sure that adding this particular service to our waiver will be cost neutral and it won't add any additional cost to our program. In addition to that, there are other state agencies that also operate home and community-based waivers. I don't think the others actually include residential services. However, the waiver, the independent living waiver operated by VR and the waiver for the elderly that's operated by health and senior services, staff there have also indicated they will at least look at the possibility of including a transition service in their waiver as well. So we will have further discussions about that possibility. That action plan is on page 2 of the handout on action plans. Hopefully the plan is we'll get a waiver amendment done and have that submitted by march 1st of 2004. On page 3 of the action plan, there's the subcommittee put together a plan for addressing housing needs. A barrier for individuals who are moving out of institutions is having a place to live in the community. So dmh, unlike most agencies, does have a housing team and our housing team will put together a group of other agencies, be it federal or there is the Missouri housing development commission and we'll meet with them to try to put together and identify all of the housing support needs that are available to individuals. Edwin cooper who is part of our housing team will be the responsible person for that particular activity. Also another person on our housing team, pat brown, will attend a conference. It is a housing conference that will be held in Iowa in the next 45 days and it is to assist housing professionals in identifying funding sources for housing subsidies. And in conjunction with this activity, the real choices grant that DMS has and administers will help fund the cost of pat brown attending this particular conference so that's the plan on that.

MR. HELDENBRAND: And the next area then department of health and senior services has the lead on it and the area is consumer options based on needs choice and capacity and including diversion, strategies and the statewide actions completed on that, medical assistance for workers with disabilities which is objective no. 11, buy-in program since July 1st, 2002, ticket to work and work incentives improvement act and then the other one is guide to home and community-based services and then there's print copies plus DOLIR website and state website and it's PIC objective no. 2 and then we've got the recommended actions and Dick.

MR. DUNN: Thank you, Lois. It is indeed my pleasure to be here today and -- is that on? Now it is on. I'm Dick Dunn, director of the department of health and senior services. We've truly had a very rewarding experience as Dorn and Steve and Ron and all of us have gotten together during the past few months. It is interesting to note, though and maybe this is a reflection of the time as I look at my colleagues with me and I think it is probably reflective of the fact that we only have two suits each. And Dorn and I wore the red tie today and Steve shows up with a blue one and Steve and I have a gray suit on and Dorn comes in with a darker color but one of these days we'll get it right and maybe we'll all show up. There's a number of things that happen as you begin to work as closely as we have. The other side is we've known each other for a great many years. I guess we not only begin to think alike but maybe we dress alike. I don't know what it is. We haven't checked the rest of our wardrobe out. Perhaps that's at a later time. This comes out pay very interesting time. Just last evening I was in St. Louis visiting with a group and we were kind of reviewing where we were as far as diversion activities are concerned and we simply just, you know, touch the tip of the iceberg. In looking at services we have and last year we delivered about 14 million units of service to individuals in the community. It certainly point to the fact that as we move forward and if we're going to be successful in being able to address the chAllenges that we have, the needs and the desires of our clients, that this is a very relevant issue for us to be talking about today. The department of health and senior services assignment, if you will, in this respect was to go back and review our rules and to readdress that and develop new rules as it will allow us to identify where we need to tweak some of the policies and the procedures in order to really emphasize the whole issue of the clients' desires, needs and informed public and informed consent, if you will, where individuals want to go. So that was one of our assignments. The other one was is to follow-up on what Anne was referring to was FDS. We already have a system in place with utilizing some of the expertise of the Sinclair School of Nursing, so the system is there for us to be able to tap in and to add a few additional areas and to give us the information. So we really know what the needs of these clients are and what their desires are and to be able to put that in proper perspective as we move forward. Then the other chAllenge that we have and as we work very closely with the department of mental health is the whole issue of the transitional care that is being provided in the habilitation centers and obviously if an individual is in there, stabilization, diagnostics, and the information regarding their needs and what they want to do is very important and I think the important aspect of this is we've identified a time limited type of activity or experience there and it provides us with a chAllenge to be sure that we have been able to work with our providers and in the communities and be able to identify how we're going to be able to address those individual's needs should they desire to move in one direction or another. Like Dorn, that's about the extent of my expertise in this area and I'm going to ask Nancie McAnaugh to maybe talk about more of the specifics. Nancie.

MS. MCANAUGH: Is this on? The green light is on? There we go. Kyle, can you hand out those handouts that I brought? What kyle and Lois are going to be passing around to the committee and I'm sorry, I only brought 20 copies but you can find this rule out on the secretary of state's website. It is the nursing home resident's right rule and one of the things that we want to do. This was actually a really brilliant idea that the department of mental health came up with is to modify the current nursing home resident right rule so it would also specify that clients have the right to receive treatment in the least restrictive environment and to be informed of their choices concerning community placement. The resident rights is information that's handed out to families and to residents of nursing homes. The rule is required by law to be posted in a conspicuous location in the facility. Copies are supposed to be provided to anybody who requests them. So this is really just an oversight that we currently have in our current nursing home resident right act. We feel that by adding this to the information that has to be handed out to persons entering nursing homes and by requiring nursing homes to post this new part of the resident right act, it will give us another venue to let people know that they do have the right to receive placement in the least restrictive environment because there's always a possibility that they may not be told about that before they enter a nursing facility. So this is something that's very simple that we can do very immediately. We're already working on rewriting this rule to include that and we will go ahead and send that out to our next board of health meeting and after they take a look at the rule, we will go ahead and promulgate that with the secretary of state's office. The second thing that Dick had mentioned was the MDS has an area to add state specific questions to it and we just actually haven't done that before in the state of Missouri. What we would like to do is to ask the question, why are you entering a nursing home? Is it because you couldn't find services in your local community? Is it because you don't have family members or friends to help care for you? Were you informed of other options? Or is it just the most appropriate placement at that point in time? We feel that by collecting this data, we're going to be able to close some of the gaps that might exist in our current service delivery system because I think intuitively we all think we know why somebody ends up with a placement in a nursing home. When it comes right down to asking that question and collecting it in a very specific way, a very data driven way we have not done that in the past. So we're going to be entering into discussions with the sinclair school of nursing up at mu to add those state specific questions to our MDS stuff that we're currently collecting. Then the third thing that Dick mentioned is actually something that mental health is currently in the process of doing. That would actually require that new admissions to state-operated Hab centers would be considered time limited unless the person is offered community services and chooses the Hab center. And what happened here is department of mental health has already implemented a policy and is in the process of rolling out that policy statewide currently. I defer to Anne Deaton if she would like to at any additional information as to what the department is currently doing concerning the transitional placement in Hab centers. Just a really great idea to make sure that just to even change the mind set that, you know, when you go into a Hab center, it is a transitional placement and that placement will be looked at again after a certain set period of time to make sure is this still the most appropriate placement or should there be placement out in the community setting, do you want to add anything to that, Anne?

MS. DEATON: I think you said it very well. What we're excited about. I mean it was always the role of the Hab center and the regional center to make sure that people were appropriately placed and had the options of the least restrictive environment and they knew that if they qualified to go to a Hab center. However, there is always things that you can do to fulfill your responsibilities better and now when someone enters, we are tracking them most intensely, assuming we could not find an alternate community setting at that time so that after 30 days and then 60 days and then finally 90 days, we're really looking at something. If you can't go back to the community after 30 days, we give an extension to 60 days but there is a panel that will be looking at that to see, did you turn over every rock, is there anything that we missed? Collectively if we put our heads together, is there an option we missed? So this additional tracking and collaboration among stakeholders in the community and the regional center and the Hab center is a new way of doing what was our responsibility all along and we're very excited. We think it will strengthen it enormously.

MR. HELDENBRAND: As you can see, because these action plans are so integrated it has made for a really chAllenging presentation for you today. But the last area and certainly not the least one is the real choices grant and the lead on that one is the department of social services. Again following your slides, statewide actions that are completed on that one is funded six mini demonstration projects, Missouri's guide to home and community-based services, informed choice curriculum and informed choice and Olmstead training. Steve.

MR. ROLING: Good morning. My name is Steve Roling, and I'm the Director of the Missouri Department of Social Services, and I'm relatively new to state government. I was sworn in in March of this year and a month or so after I was sworn in, I get a call one morning from the Governor and the Lieutenant Governor inviting me to their offices. I don't get many calls like that. So I go over there and they invite us and ask us -- they have invited Ron and Dick and Dorn and I and others to work closer together so we could meet your objectives by working closer together as departments. When the Governor and Lieutenant Governor ask you to do something, it is something that you listen to very closely. Fortunately for the state of Missouri and fortunately for me as the new guy, I've known these three gentlemen for a long time. Dick and I go back many years when we were both kids and didn't have gray hair. And I want to assure this entire commission and the people in the audience that if there were silos between our departments, they no longer exist. These four departments will do whatever it takes to be collaborative and cooperative in serving the needs of our client base. That is sometimes easier said than done but you have a commitment from the four of us that this will be done. Hanging around Dick and Dorn and Ron has helped me a lot because as Dick said, we dress alike now. Before I met those guys I didn't wear shoes and socks so this has been an upgrade for me. So I appreciate you guys helping me out. To tell you about the real choices grant, I've asked sandy Levels to give you an update. We want to make sure that the real choices grant is consistent with the PIC objectives, and it's consistent with all the other great programming that you all have heard about this morning. So Sandy. Thank you.

MS. LEVELS: Am I on? For real choices, the result area that we decided to focus on was to streamline the system to assure easy and quick access to needed services and supports. I found this whole process to be very interesting because I think as several of my -- of the other state agencies have already noted, I think that for me this was a difficult area to work in because everything is so interrelated. If we're not careful what we find, we find ourselves doing is just stepping all over each other. When we actually sat down to look at what it was that we had completed, what we had left to do, we felt that there had been a lot of work actually completed, even though there is a lot that remains to be done. And that in itself made me feel good. We are the lead for real choices, but what I had found is that I also must be an active participant on personal care, transition and the diversion. I know it was renamed. I'm sorry. I can't think of the name. But we must all be active participants because we all need to play an active role and we all have a part in it. Just listening to some of the other agencies, they all speak to real choice because real choice is really about a systemic change to how we conduct our business and how we deliver services to the consumers. So having said that, we chose streamlining the system. There's been a lot of work conducted already as far as looking at common data elements that can be shared amongst the agencies and one of the things that we would like to do with real choice is take it a step further. Take it to the next step and try to identify which one of those data elements can we actually share electronically. What we would like to do is try to set up a system where a consumer again does not go from agency to agency and repeat their story, but also allow that agency to have pretty quick access to the information. So if a consumer can go into social services and make application for services but then they may need to go to voc rehab, then we would like for that information to be available electronically so Voc Rehab could just pull that information up and start conducting their work based on what another agency has already done. So what we would like to do is take the work that's been done by the TBI project and I think it's been mentioned here before, project success, which has been mentioned here before and we would like to take that work, sit down, look at the common data elements amongst all of them and then work with our group to see how we can get it electronically based so we can try to share that information electronically across agencies. So if you look at action plan, page 7 under action. I just kind of paraphrased those first two actions there. Identifying the common data elements and then participating with a group of other state agencies to figure out how can we do this electronically. The last action that we would like to take upon ourselves right now is to develop a plan to sustain ongoing training on real choice. There's already been some work done around that area but we think we're at a point now to where we need to expand the availability of that information so that's going to be the next task that we perform underneath that area. That's it.

MR. HELDENBRAND: So just in summary, as you look across what's been presented to you, what we did is we looked at what had been done and we tried to build upon what had been done and then to identify some additional steps that we could take thinking that the commission would probably take some additional steps like later on. Kirsten, that's the end of our presentation. So if people have questions.

MS. DUNHAM: I was thinking it might be easier if we take it area by area so we can go through in a somewhat organized fashion with our questions. I was just going to share in case it is helpful. As I was reading this and I like to think of things in real practical terms and I was trying to think of examples of how is this operationalized and how asked this work from a person in the community. What does this mean to them? Some conversations with Kyle and Julie Gibson in the Governor's office and Lois helped me so I just wanted to share what helped me think through this. One, is that it doesn't change the internal structures of the agencies, the appeals procedures, complaints procedures are still the same. If individuals have a specific complaint, they still work through those same processes. This is really for the things that cut a cross all agencies that are systems change that affect each of the four agencies involved. And an example we talked about how this might work is say we hear from the community through public testimony, through work groups that there's sort of a common theme. For example, there's interest in being able to pool your money from four different agencies and have more control over your budget and your services. It does affect all four agencies and the PIC would consider is that a priority for us? Is that something we want to focus on? If so, we would then look at what are the four key areas? Where would this most naturally fit and then make those assignments and move forward in that way. I just wanted to share that because I like to think of things in sort of a practical term, how does it work, what does it mean? How does it benefit the community? In addition to these action plans being accomplished will benefit the system, I wanted to talk a little bit about how the audience, the community can use this as a way to achieve our systems change goals. Does anyone have questions on the first key area, which is personal attendant services?

MS. JACKSON: I have a comment. I think it is great you are working on the universal document that includes HIPAA on the back of the form and I really think that's a good step in progress. It is a small step but it is an important step and I think the rest of it works.

MS. HAYS: I think using project success is an excellent idea. It is a project that's been going on for a couple of years, right? So I'm hoping we're going to duplicate that, is that the plan possibly? They have done a wonderful job of what they have been doing.

MR. VESSELL: That's not a program that is widely known yet. It is a five-year grant. We chose Columbia simply because all the partners are in one building in Columbia. And largely to improve serving people with disabilities who are looking for employment. However, we could use what we've done there, which is really remarkable in only one year actually of existence. To really use that for other services as well. I think it would be a good idea. I look forward to that.

MS. HAYS: I had just one other little question. I think I'm still in the right section where 100 people have been moved out of institutions. Has that been like the last year, the last couple of years? What kind of percentage is that? I mean 100 sounds like a wonderful -- it sounds wonderful. Out of how many?

MR. VESSELL: I'm not sure. It depends on what number you want to look at as a percentage. A number of any percentage is going to be small. Percentage of people in homes and number of people receiving personal attendance. However you view it, it is a very small percentage. The time is over the last three and-a-half years.

MS. DEATON: Kirsten.

MS. HICKS: Am I on? Those who know me have heard my story. I was a scout director and went to Washington, D.C. To a meeting and they held up our bulletin as the way not to do it. So I learned two words at that meeting. Concise and graphic and I just have to say that this presentation has not been concise and graphic and I have a lot of questions. If you put the application. Where does the application, JeAnne, you made up an application and we have a copy of it here. Where does that application enter the system? Then is there a file on Geneva from there on? How do you appropriate the funds for her care from mental health from all of these others. You can tell I'm a greenhorn because I don't have the slightest idea of how this is going to operate. But I do have some questions about that. Can you simplify it for me?

DR. LOYD: A lot of those things that you mentioned are things that we worked out in the process through the pilot project. We do have a draft of some common data elements that have already been identified by the TBI project and the form that has already been approved by the office of administration. What we're wanting to do is to pilot that with project success and let the partners and the consumers tell us how that is going to work best. So that will come from piloting that project success, the operational aspects. We've not sat down and identified.

MS. HICKS: Haven't we already had a couple of pilots. I worked on this and I have a copy of the report from those pilots.

DR. LOYD: This is something different. This is actually accessing services. That's just informing people about services. This is the next step.

MS. HICKS: So the next step is accessing.

DR. LOYD: Yes.

MS. HICKS: Am I correct that Ron's office will be, will accept the applications in the beginning? I mean are you going to be the lead agency?

DR. LOYD: We're the lead agency on developing the process. What we're trying to develop is anybody can go to any agency and that's the access point.

MS. HICKS: So we don't have an access point?

DR. LOYD: We want them all to be access points.

MR. VESSELL: Not just one.

MS. HICKS: Okay .

MS. DUNHAM: There are different theories, you have one single entry point or you have had multiple that make it feel like from the consumer's perspective that it's one because wherever they go they fill out the same application hopefully just one time and then the other agencies access it electronically. So even if structurally it is not a single entry point, from the consumer's perspective we want them to feel that it is.

MS. DEATON: Martha, if you think back to the ease group, it is kind of going back to the future, right? The idea was no wrong door, so to speak, but wherever people presented themselves with that data, that the electronics of the situation today, the computer capacity and if we could get to shared data elements, that that would do the walking for the individual that once they entered the systems infrastructure computer wise would be able -- we would share that information. So it is not dissimilar, I don't think in concept, to what you worked on when I was at aging. We spent a lot of time and I think it is that concept.

MS. HICKS: Well, what concerns me, I think, is the duplication of services. If you have this person coming up on the data at mental health, how do you know that some other agency has not already done what is being asked of you to do?

MS. DEATON: I know that's one of the goals, and you all can talk about it. We're looking to create in this system and the department of mental health right now is into a project called see more to give us computer capacity to talk with the other state agencies so we can identify that very thing. There is increased collaboration among the agencies to identify a primary service coordinator or support coordinator so that you could coordinate a plan or support for an individual.

MS. DUNHAM: Does that help?

MS. HICKS: Some.

MR. SAMANIEGO: Is there any way that he could get a copy of that application too? That's what we wanted is one universal application that had common information where if I came to this agency, I would have to fill it out and come over here and fill out and get this information and all agencies pretty much have the same information and hopefully the same answers to the questions that were being asked. That would be great.

MR. VESSELL: I think we can get a copy, yes.

MR. SOLOMON: Are we following each topic?

MS. DUNHAM: Yes, I was trying.

MR. HELDENBRAND: I just want to respond, Martha. I understand as a new commission member, this is overwhelming with all of the information. I wanted to do like a power point, like Lieutenant Governor Maxwell. This room doesn't lend itself very well to make it that visual. It would have been easier for you to follow. I appreciate that. With the tbi project, what we found is that people told us that they repeated their name, address and everything as many as 20 times when they went to different programs to get assistance. So this recommendation is consistent with again what the PIC asks this team to work on, which was a common application form so that when you went to any agency, then you would be asking for the same information which then could be shared between the agencies. So that's what this is. The first step in developing that and taking what's been learned from these other projects and then developing this -- a type of form or an electronic solution that could address that.

MS. HICKS: I shouldn't have come, I guess, but I have another yes. Anne, is this the same form that we came up with? Is this for everybody or is this just for those who want to transition? Are you saying --

MS. DEATON: My understanding this would be for everybody and they did have the tbi project, they did use the good work you and those other committee members look. It looks very familiar, doesn't it? So that all got folded in.

MS. HICKS: So we're talking one stop shopping here?

MS. DEATON: Right. You just didn't realize how much you contributed to today's outcome.

MS. HICKS: I thought it was on the shelf somewhere.

MS. DUNHAM: Other questions or clarifications on the first pas area? Transition from institutions. Questions?

MR. SOLOMON: You know, you guys are even beginning to look alike. I'm going to comment on this one because I have several comments that probably are general, but I want to comment on this one when we're talking of institutions I'm assuming we're talking nursing homes, not just state operated. And while I've been through many of the silo presentations, Steve, I hope you are right when you say all silos are not there. But it is tough, man. It is tough. It is not your fault.

LT.: I think that's the one I want to acknowledge here. We're still dealing with the situation where we've lost the funding for the flexibility funding. So that's a major step back. That's not your fault.

LT.: That is nobody's fault here. If it's anyone's fault, it is this commission's fault for not helping more. So I'm not going to say anything or I hope you don't take my comments as negative because I see -- I've been in your situation, I've been in Dorn's situation many times and I know that division directors have to play the rules and they have to play political rules and they have to play federal rules and we can all come here and make presentations and they are interesting. You know, Martha, I think you are my kind of person and I don't even know you.

MS. HICKS: Did I teach you? I taught everybody else.

MR. SOLOMON: No. It is unfortunate that we can't simplify this to the point that we have lawson the state on the books that limit how appropriations can be used, limit flexibility. Some programs are entitlement, some are not and so I guess what I'm saying is maybe sometimes during this presentation and without you all being in jeopardy of getting pulled out of the tree, maybe it would be appropriate for this commission to say, how can we help you with some of these things? We identified barriers. I don't think there is any division department director that says how can I not serve people today? And I know these fellows and they are good people. And you heard my frustrations at the last meeting. I said some things I probably shouldn't have but you get entitlement too when you are a former state person. And I guess I'm just a little bit -- I'm skeptical, I'm optimistic because I know the players but I'm skeptical that when you get to that really bottom line, the bottom line, Martha, what's changed? 100 people have been placed from nursing homes from what date? How many have entered, 300? And I guess what I would like is to say, here is our baseline. I'm a fan of NASCAR. I want to see the white line that says go and the white line that says stop and I want to know how many were there two years ago, three years ago. I can give quoted data on Missouri when I was director. I thought there were 1,000 people in nursing homes with MR-DD. I was corrected, rightfully so, now there's 400 in nursing homes. Well, I mean that's a miss but not that big of a miss. I could have probably guessed better than that and I'm not being critical. I'm reading national reports with people with credibility that are paid. So my point is finally Anne releases a report, not finally, as soon as you were asked, that I have. And I keep that paper. Two years ago you did that. So we know now okay , there was the start line and did our car even make the first lap? Where did we place? So I guess I'm begging for simplicity, outcomes, realizing that there is a political environment of which you are playing in of which the Lieutenant Governor made a very good point of, and I made, I think a pretty good point too, giving myself a little credit, when you get to this level and it's not always the Governor, particularly in this climate, you get to this level, these people can do only what they can do. So without everyone standing up and saying, well, gee whiz, we could do this if, I guess I'm just begging for quantifiable numbers, which I know you have. I'm not saying you are trying to hide it at all and I'm also going to make a point that those silos are never going to go away absolutely there are entitlements, if you are Medicaid you are entitlement so you go in a silo. If you are not Medicaid, you go somewhere. I don't even think there is a silo for you. These are the kinds of things that this commission should be attacking. These are the kinds of issues up here that I don't care who you put in those seats, the greatest -- and I know Dorn better than any and I know he is a great, great director and he does a very, very good job but I also know there's a point for which his chain gets pulled and they pull him out of the tree. So I guess let's get real about this. I'm tired of these studies. I was a Nash ambassador when I was a state employee and I would use those studies in the back of my car when it snowed, and I used it to weight them down. Am I making sense? They are wonderful and they make for good reading. By the way, I think you are doing a great job, don't get me wrong. The system leads you to impress us. You don't have to impress some of us. We know the problems. So I guess that's just a general comment. Another one of those out of frustration, here comes Dorn. I can't get this off.

MR. SCHUFFMAN: Mine is on. You made a couple of good points. I don't want you to misinterpret what Steve said. You are quite right, that for example, Medicaid. You are either eligible or you are not. If you are, you get certain things. If you are not, you don't. That's not something that is in our control. And so what the point that you are making, I think two things. So no matter how well we work together, that doesn't change the Medicaid rules. So there's those realities and part of your concern or question might be are there recommendations that the commission wants to make either to the Governor or to the general assembly or even to the feds about things that need to be changed that are of that nature. The two other things. I think your right to ask for -- it is not hard to provide -- like transition from institution to community. In each aspect where are we? Hab centers, where are we, where do we expect to be? In nursing facilities, where are we, where do we expect to be? How are we breaking that overtime? We should be tracking that. Those are both good points. But Steve's comment, I think, was more about the will of the departments to do those things we can do, some things we can't do and you are recognizing that and emphasizing it. I guess the third thing is you asked us, you are asking us what can you do to help us? Maybe that's the question we need to think most about and come back to you. What are the things we need the commission to do to enable us.

MR. SOLOMON: Right.

MR. SCHUFFMAN: That's a good question.

MS. THURSTON: I want to thank Dorn and Anne and Kay for what they have done. There has been a lot of progress made and tracking and all the work with the Hab centers and particularly the new waiver. I guess my interest, everything is pretty well been said. My interest lies in that we continue with informed choice, which I think I'm probably need to speak to the next that we do more trainings and that we do it statewide. We have done a pilot now and I would like to see that go statewide in more trainings and I would also like to see some of the material used from MOAIDD. I think we do reinvent the whole some time. We do have a lot of good volunteers from MOAIDD who I think could be volunteers for that also.

MS. HICKS: When I first started working on this committee, on the curriculum, I didn't know what our job was. And I concluded and I hope I'm correct, that our job is to find a way for people like Lisa over here to get out of an institution and live on her own. Now, we're not going to ever be talking about hundreds of people. The first person I called was Ron Vessell to try to clarify my position or what my job was.

MR. VESSELL: It didn't do much good, did it, Martha?

MS. HICKS: Yes, it did. It eased my conscience because I had envisioned thousands of people and I knew that it would be a tremendous job. After talking with him I know that we're talking about just a few people. You see there's something to be said for institutions. There is a reason for there being and so what we're trying to do is to present for Lisa and others like her, the opportunities. I don't think we're ever going to be dealing with hundreds even of people. And I think it would be amiss not to offer the opportunity for those who can live on their own and that's what I came up with as my job on this. And I hope I'm right on this and maybe some others have other ideas. But my idea is that it's never going to be thousands of people, it is going to be hundreds. When there are people like Lisa who have the ability to live on their own, then we need to do something about it.

MS. REED: I would just like to comment on the issue of housing options. With your efforts to put together a group to explore what the options are, I would just like to suggest that you talk to communities. To me housing seems to be a city issue. I'm involved in real estate development of single family homes and I know that we deal with the city when we're getting permission to do things. I would just like to see some pressure put on cities to find out what incentives they are offering for developers, for instance, to accommodate homes for people with disabilities. What the integration is between developers and HUD programs and the like. I would encourage you to go out and actually speak to cities, particularly in Kansas City and St. Louis where it affects a great deal of people on housing. Thank you.

MS. DEATON: Robin, Anne Deaton here. Would you be able to recommend or would you, yourself, be willing perhaps to sit on a team that is going to look at the housing question? That's one of the action steps and you might be able to recommend.

MS. REED: Yes.

MR. SAMANIEGO: I would as well.

MR. SCHUFFMAN: I might mention. As you point out housing is mostly a local issue. There is the Missouri housing development commission, but most of it is local. So our housing team works with the local housing corporations. That's where most of the work is done at the local level in a city or a county. So that's clearly part of it. But that's what our team does. We're lucky to have some people on there.

MS. DUNHAM: I need -- our Realtime Captioner needs a break. We've been going for a couple of hours. I don't know what your schedule is. If you need to leave now. But if we continue the discussion, there's representatives from each of the teams who can take our input, I assume.

MS. JACKSON: Can I say one more thing before Dorn leaves? After you finish looking at the housing for cities, we don't want you to forget the rural areas.

MR. SCHUFFMAN: We have lots of local cities. We, through our own business we do lots of things.

MS. JACKSON: The statistics from where I live in west plains, population of 11,000 people, there might be three accessible apartments in that whole area.

MS. DUNHAM: One comment for juan real quick.

MR. SAMANIEGO: I will be real quick and I appreciate it. This is a big headway towards where we want to go and which is one universal form that all agencies can have access to it. My question is where do we go from here? And I know it is a short question but it is a really long answer and I'm not expecting it right now. But this is it, isn't it? This is one of the major obstacles and one of the major goals that we have in order for individuals -- if I'm having a hard time understanding all of this, how in the world does somebody who is going to come up and knock on the door who has never heard of any services be able to understand it? I think it is a great start. Let's keep going.

MS. DUNHAM: There is an action plan with the next steps so we'll keep on top of that.

MS. THURSTON: I'm glad you mentioned housing because I think that is one of the most important things that you are doing because it is probably the first no. 1 barrier, and I think there's money to be had as I learned in the CMS convention, that hud has money and is handing it down, getting it redistributed in the state and I really support that. My son lives in a hud project, single bedroom apartments that's a million dollars project and it's really great and any of those who have not seen those, I would certainly invite you to do that. I feel like section 8 should certainly be investigated in your committee too.

MS. DUNHAM: Before we break, we did have another commission member that has retired and hopefully is enjoying life a little more relaxed pace and not having to quote Medicaid numbers in his sleep. We would like to recognize Greg Vadner. He served on this commission. He served on the first Olmstead commission as Co-chair with John Solomon and Greg, we gave another commission member a plaque and I found y already have received one from the Lieutenant Governor so it would be a bit repetitive, but we do want to recognize and I want to share some of my personal recollections. When we were looking on the house bill 1111 language that would allow money to follow from the nursing home to the community, Greg was very supportive of that idea and probably the biggest sign of his support was he just kept quiet about it so nobody caught on right away. He was always very supportive of the consumer-directed program and I'm sure VR could vouch for his working with the independent living centers and vocational rehabilitation to make sure the Medicaid funding flowed and worked for that program and also most recently when the Governor served on the nga Medicaid task force, Greg worked with the Governor and other members to try to come up with solutions that do not have our block grant Medicaid funding and to protect home and community-based services and block grants would have been devastating for the work that we wanted to do. And I had heard that Greg is known nationally as Medicaid guru and knows all the rules and that was part of why the Governor was in addition to his interest was Greg's expertise that he could bring to that task force. I would give an opportunity if others want to share any memories. I know he was active on senior rx commission.

MS. HICKS: He is a good man.

MR. VADNER: Thank you, Martha.

MS. HICKS: He is a very good man.

MS. DEATON: You are going to think it very dangerous but I used to be deputy director of aging and I would walk in Greg's office and I would have this new, exciting idea and I would say things like this is the craziest idea I've never seen and he would wad up my idea and it might hit the waste paper basket and then he would reach it over and pull it out and he would say okay , tell me about it. I can't think of an innovative idea or initiative, risky as they may have been, that he didn't end up supporting. One of them was the ease project that I just referred to earlier and Martha worked on that and it was to come up with a single application form. This is very much similar to what we came up with. But we kept changing directors of aging so it came to be a problem. The other initiative that really was person intensive to get it started and he committed himself to that was placing case managers in hospitals around the state. We placed case managers in 32 hospitals and the hospitals picked up the bill for having them there. We paid their salaries. We've hit hard budget times and I know that the division of aging had to pull back on some things. But those are just examples of initiatives that he stood behind and I just want to commend him for that.

MR. VADNER: Thank you very much. I just stopped by at the invite of Kirsten and I sure appreciate all of the work that the commission has done and will continue to do and all of the public input because the public has to keep the commission's feet to the fire and everybody has to push together and there's always going to be tension but still the direction is good. I have got to say that my greatest accomplishment in my mind over all of my time still is just a silly little thing, but it is so appropriate to this group, which was when I was the director of aging and went into that job, there was a licensing. Institutional care and then there was alternative services and the day I hit the office I kept saying what is this alternative services? Alternative to what? And they kept saying it is the alternative to nursing homes or institutions and I kept saying, that's crazy, it shouldn't be the alternative. Maybe the other one should be the alternative to this and they kept saying all of these forms and the budget books would have to change. It can't change a name like that that is institutionalized. And Anne will remember this, one day I just got so fed up, I said, it is now the home and community program and it's no longer alternative care or whatever it was. And it was a silly thing and it caused all kinds of shock waves but it is so relevant to what the PIC has been after for the last several years and still to this day I know people go what? But that's the thing I focus on as probably my just greatest accomplishment that I'm happy about. So thanks very much. Carry on the great work.

MS. DUNHAM: We now have a promised break for getting lunch. We would like to try to convene pretty quickly, so give debbie about 20 minutes break.(the noon recess was taken.)

MS. DUNHAM: If we can pull back together after the lunch break, there are a couple of housekeeping items. We do have for the commission members and other work group members, we have the expense forms that are up here at the front table, Donna Borgmeyer has this. Did everybody sign the sign-in sheet? And there's also the forms if you are receiving reimbursement for personal care and respite services up at the front desk here. I found out that there's another meeting going on this afternoon that some audience members have to get to. It is the MOCIL legislative committee and so we're going to offer those members a chance to give their public testimony before they have to leave for the meeting. So we're not taking entire public testimony at this point, it is just for the audience members who have to leave at that meeting but wanted to have a chance to speak to us. There will be opportunity at the end for the rest of you to give your public input. I know Jim Tuscher, is there anyone else who has to leave is that want to give public testimony? We'll give the floor over to Jim.

MR. TUSCHER: You have got me on a short leash here. I really have questions rather than testimony. I'm not entire sure that I followed that presentation completely this morning. It sounded like a lot of stuff has been accomplished. I had a question about the 100 people that have gotten out of nursing homes and I talked to Ron on the break and that doesn't seem to be -- is that as a result of what this committee has done or the council has done? No.

MR. VESSELL: Well, I probably would say that there wasn't some effect. Go back to the first commission and things we tried to do and so forth. But as you know and I know, in the personal care program, the state program that there has overtime been a number of folks who have been able through the help of certain staff that maybe at independent living centers and so forth have been able to leave nursing homes and we've been tracking it for the last three and-a-half years. So that's why we're tracking the number now. What contributed to them leaving, I mean is probably 100 different reasons or answers for that. But as things have changed, the speed with which some folks has picked up, so changes overall may well have had some effect on it. There is not probably a good way to track that, though.

MR. TUSCHER: So it is not necessarily as a result of the work of this commission or the first one?

MR. VESSELL: I don't want to say that the work of both the first Olmstead commission and this one hasn't had any affect at all, though. It is an effect of probably a number of departments and divisions probably working better together. I would probably say if you looked at those 100 cases and instances, you would probably find times when there was cross department cooperation on some of those matters. I'm only sure you would. Now, is that a result of this commission or the first one? I don't know. Maybe we would have done it anyway, maybe we wouldn't.

MR. TUSCHER: Thanks. The other question has to do with informed choice, and I know several people that participated in getting a plan of action together and giving people information choice. It sounds like it is going on.

MS. DEATON: We had a pilot in Marshall. I can't speak for the division of aging side, and I think it was respected at one of the meetings I missed. Perhaps the last meeting, but we did have an informed choice meeting and my understanding is that it went quite well, that a number of residents came and they listened to this and now with the regional center, they are looking into okay , what happens with follow-up? I actually had a question around this informed choice myself. I know we did a pilot. I know a pilot was done in a nursing facility. I don't know that we've seen an evaluation of it, that the commission has seen an evaluation that would say, okay , did a single person express any interest? What happened? What is the fact on tracking and follow-up? That would be an issue. Who is doing evaluation of that? Because I prepared to roll that program out across the state. That is my goal through all of the Hab centers.

MR. TUSCHER: So the informed choice is a pilot at this point and in your department but it is not statewide yet?

MS. DEATON: It was a pilot and department of health and senior services had a site. We had a site at Marshall. And my intent always was to roll that out. But I would like to see what we've learned in terms of these informed choice pilots.

MR. TUSCHER: What about the department of senior services? Where is informed choice there?

MS. MCANAUGH: From what Linda Allen has told me that we're continuing to train additional individuals. From what she told me, the idea was to train two people who would then go out and train others who would then go out and train others. We currently are doing that in the department. I don't know if you saw this report that's been passed out.

MR. TUSCHER: Are people being given informed choice or have they been?

MS. MCANAUGH: In the small pilot in the one nursing, home, yes. We're continuing to train trainers, and I apologize for not being as filled in on this issue as I should be. It's been very difficult to get a hold of Linda Allen lately. She's been very busy within the department. And as I see from this report that I just got a copy of yesterday, I was supposed to talk to her and see what I could find out about that and I had not been informed about that. Again I apologize. I will be more than happy to give that information to Kirsten and she can disseminate it to you as quickly as possible.

MS. LEVELS: That's one of the areas in our action plan that under real choice, that's one of the areas that we're going to start working on to determine whether or not do we expand and how do we do it, so that's information that we hope to be able to come back. We originally just reported the pilot that we did at Marshall and the one we did with Paraquad, so now we're looking at how do we now expand that?

MR. TUSCHER: How you expand or if you expand, which is it?

MS. LEVELS: Hopefully how to expand. Not if we expand but how do we do that, so that's what we're going to come up with a plan for.

MR. TUSCHER: I'm hoping for how and not if.

MS. LEVELS: No. I said how do we expand that.

MR. TUSCHER: I thought I heard both. I want to observe perhaps that it's what, four years and coming up on three months after the Supreme Court decision, and we're not giving informed choice across the state yet. And I know John was disappointed at the first meeting of the first commission I suggested informing people immediately based on the belief that they at least be in a position to advocate on their own behalf knowing that the state would drag its feet on moving on something like this. But I have to express disappointment, I guess, and the belief that justice delayed is justice denied and if people don't even know they have rights, you can rest assured a lot of them aren't going to access them. I also saw a federal report that says that 7,000 people in nursing homes in Missouri expressed a desire to return to the community. From what I'm hearing they probably haven't even been informed of their right to return to the community. If you were a cynic and some people think I am, you would conclude the 7,000, if this survey were administered by the nursing home itself, which I believe it is, that it probably wasn't in some cases always given in a way that encouraged a cash customer to leave. So it is like saying how many folks would like to buy your refrigerator down the street. So maybe a small number anyway.

MS. MCANAUGH: Can you tell me what report that was? Because I'm unfamiliar with it.

MR. TUSCHER: I saw it from Steve gold.

MS. DUNHAM: It was the MDS status. It was a question asked by nursing homes, would you prefer to live in another setting. I might even have the question number in my notes. Is that the same source that you saw, Jim?

MR. TUSCHER: It was from Steve gold, right.

MS. DEATON: Jim, a couple of things. I'm not sure if you were here when I spoke earlier when I talked about the fact that we did go out and do a renewed training of all our staff service coordinators around informed choice and provided materials to both the service coordinators at the regional centers and at the Hab centers. We do think these meetings at the Hab centers are a good thing. But we have increased just the protocol around informed choice, so there's been the training, there's been enhanced materials and we developed a policy in east district that has now been rolled out across the state which really requires the regional center. We now have case managers assigned to the Hab centers to work very intensely with an individual who, for whatever reason, is placed, admitted to a Hab center with a goal being that that's very time limited. Our hope is that they have been given enough options. We're worked with enough providers, we've been able to put together a service package that they don't get admitted but if they choose, if they meet or for some reason they need 24/7 structured care for a temporary period, we have a completely new policy on how we track that. And the panel that tracks the robustness with which we try and return someone to the community is made up of providers, stakeholders, advocates, representation from the rack, SB 40 board and we do that at 30 INGS 60 and 90 days. Now that's just a new policy we've started. I would attribute a lot of that to momentum from this commission, and also I was asked maybe by Robin at the very first meeting I attended for some data on MR-DD people or maybe it was John. I can't remember, in nursing facilities. We've provided that. We actually or at least I was not getting reports on that. And so I do think that's another thing. And intensified efforts to go back and review each of those cases to say do we still believe. Does that person still choose to remain there? What can we do? So I think there have been things we can attribute to the increased incentives or just the impetus that has come from the commission.

MR. TUSCHER: Maybe I misunderstood. I thought I understood you to say that informed choice had only been a pilot study in one area of the state.

MS. DEATON: People have Annual meetings and many meetings and they have to sign. They can even bring an advocate to the meeting assessing their situation. We've strengthened those for.

MS.: But this new pilot is where someone actually comes in and has a program with residents. Now, we never had that kind of program but we had other mechanisms that are strong and good. And we've even strengthened those with the new policies. But this kind of educational program where you go to a guardian and say we're going to have this program, can your loved one or your ward attend, we haven't had that before and we want to promote it and expand it.

MS. HICKS: There are about five or six people out here in the audience that I worked with on a committee that came up with this curriculum. I mean we came up with a curriculum for choice and then we came up with this, which is part of the information. And I'm pretty sure that a couple of the people sitting out here have participated in the training. I quit when they started training the trainers. Because I felt like I had said all I had to say. The curriculum was complete. We had help from the young man from ku. I can't recall his name.

MS. O'BRIEN: Mike McCarthy.

MS. HICKS: He was the leader but this came out of and we went for two years, didn't we, approximately? I know some of you have been part of -- have been trainers. And I thought we had four pilots going, did we not, Mary? Linda, we have two?

MS. O'BRIEN: We wanted four, we had two and then we were supposed to after we had the pilots come back and learn the lessons from the pilots and correct the training, which we've never had.

MS. HICKS: Linda, you were in charge of it. I'm sorry.

MS. DUNHAM: Maybe some of this will be resolved if I let you know that when we get into the discussion about work groups, this issue is one that we want to concentrate on pretty heavily, beef up this informed choice process, expand the training, so I'm not trying -- you can still ask your questions but that might help answering but if people are wondering what are we doing next, that is our intention that this informed choice work group is going to receive even more focus group. I'm wondering if there's a way to tie in, if there's data from MDS already asked, 7,000 people, if there could be a way we could ask the informed choice work group to come up with a plan to find out who those -- get the latest data.

MR. TUSCHER: I would like to know the status, what's being done with those folks. Let me cut to the chase. I have a sense and I'm about half an hour late for my next meeting. When can the community expect that informed choice will be in practice across the state in the relevant agencies?

MS. DUNHAM: Are you asking broadly or specifically for people in institutions right now?

MR. TUSCHER: People in institutions, people going into institutions.

MS. DEATON: Well, you know, we're looking for dollars to help us. But that won't slow us up. I know for MR-DD specifically we're very, very interested in identifying volunteers, using existing volunteers. I know that Neva is a great supporter of using MOAIDD volunteers. We're very, very interested in doing this. So as quickly as we can do it. I would like to do it in concert since there was a pilot and there was a curriculum developed. So I think we'll move this along. I think there's the intent and the will to move it along from health and this commission and DMS, we're all interested, the grant. Everybody is interested, I'm confident.

MR. TUSCHER: Is there any projected date? My concern is I've heard people talking about the group meeting and coming up with the curriculum and so on and it seems like, at least in some people's opinions, there were a lot of delays on that. I'm just wondering where the rubber hits the road when it is going to be operating.

MS. LEVELS: I think at the next commission meeting we'll have a better idea as to exactly when will it be statewide? When the training will start statewide and our target date to completion?

MR. TUSCHER: Be operational statewide?

MS. LEVELS: Right.

MS. DUNHAM: But Jim, it is not certain -- I'm not certain. Part of your question was about the people currently in institutions, and 7,000 people.

MR. TUSCHER: I'm interested in what the status of those 7,000 are, whether they have been read their rights, so to speak and just the rank and file people in institutions that may not have responded to that survey and people being considered on the way into an institution.

MS. DUNHAM: Nancie, if I worked with you when we get to talking about the informed choice committee, talk about checking out that data that might already be available and see if we can work that into the plan.

MS. MCANAUGH: I would be more than happy to go back to the department and see what we currently have. I'm a little concern about the question would you prefer to limit it to live in another setting. Just because I answered that yes doesn't mean I'm able to live in another setting. I would like to see this report and actually read through it myself to know what the questions I need to ask as far as the data that's contained in it. I would be more than happy to go back to the department and find out what's going on.

MR. SOLOMON: Jim, I remember the day that we talked about that on the Olmstead commission real well. That was the time -- I've got a fund mental question. I just feel like I'm too, maybe too fundamental. This group is too intellectual for me. Senator Maxwell sponsored language in the social service budget that allowed money to follow people from nursing homes to various other community settings. Now, last month at this meeting I expressed my frustration in that that's no longer there.

MR. TUSCHER: The language?

MR. SOLOMON: I'm asking that as a question. Are we out here -- I'm sorry.

MR. TUSCHER: What's no longer there?

MR. SOLOMON: That the money doesn't follow the person.

MR. TUSCHER: Rob can probably answer that. In certain dollar for dollar following, but I believe -- I think what they are doing now, they have given allocation to vocational rehabilitation as sort of a guesstimation of what they might use.

MR. SOLOMON: But the language in my view has changed significantly from when Senator -- then Senator Maxwell first introduced it. The day we were talking about sending a letter to everyone. Now, if that's the case, I guess I have got the basic question of why are we talking about offering people informed choices when they really and truly do not have a choice.

MR. TUSCHER: That language is still there. What's been tweaked is the unmet need stuff in there.

MS. HICKS: You can't offer a choice until you know how you are going to do it. That's where we left off with this. We provide you with a curriculum for training trainers. That's the first step. So we've got to train people who can go out and talk about the program and present this to prospective members, you see. But we cannot start the program until we decide who is going to get the application, what the application is going to be like, those are the things and you can't do that until you get the heads of all of these departments together and that's what we did today. So I feel like that we're on target. I mean I think that we're right on target. They came in today to say, okay here is what we're going to do and so on. Now we're ready to go to an application and then you can really go out and broadcast the fact that this opportunity awaits you.

MR. TUSCHER: 100 people have escaped nursing homes in the last three years. I can't help but believe if people were informed of their right to have services provided in the community that some could, whether we've got the applications, the forms and all of that.

MS. HICKS: From what I understand there has never been any system by which. I mean they just got out by hit or miss. I don't think there is any kind of a program.

MR. TUSCHER: You are exactly right. That's part of what I'm talking about.

MS. HICKS: They have just gotten out by hit or miss. That's why we're doing what we're doing.

MR. TUSCHER: I'm saying if more people were informed that they have a right to live in the community, I think they might have been motivated to get out there. It's been four years.

MS. HICKS: This just came about what, this spring, back in the spring I think we finished our work. And I think I was put on there because I'm a pusher and we might still be talking if I hadn't been there and a couple of other people. Because you can talk and talk but you have got to walk the walk, you know. That's what we're ready to do now. And I think as soon as we get this application and we get everybody is assigned their jobs as of now, then we get the application going, then we're ready to spread the word.

MR. TUSCHER: Call me and page me.

MR. SAMANIEGO: That's something I've been hearing from the beginning. We need to get the word out. We need to be universal. We need to go ahead and inform the frontline workers to make sure they get this information out. I had a call a couple of weeks ago from an individual who was seeking services, went to division of family services. The person who spoke with them said no, you don't qualify at all. There is nothing available for you. How in the world could she make that determination? So we're not doing it correctly. If you are denying information from one individual, 100, 1,000, 7,000, it really doesn't matter, you are doing them an injustice whether we have a system in place or not, they need to be informed. It is like saying this is the only room that's available to me, and the other ones don't exist. So you are limiting yourself. And you are taking that away while you know there are others. So we're lying, basically it is a lie by omission. We need to let individuals know there are different options when the mechanism is not in place. Then the individuals can get together and voice and make that decision and cast a vote but you are keeping them from casting a vote. We're doing that.

MS. DUNHAM: I think obviously, I mean this issue has been a concern of the commission and we want it to be a part of the action plan in terms of carrying out the real choice grant but also the transition and diversion plan. When we get into talking about work groups, I'm more than happy to ask that work group to look or charge them with developing a system to inform people of their options with timelines and also I know other states, I think Maryland has done some more broad-based, comprehensive information provision and I would ask -- I ask that work group to research other states and methods they have used as a part of coming up with that plan and also we could work on trying to tease out that data from MDS, and I think it certainly is a concern of everybody.

MS. DEATON: Kirsten, I do want to underscore. It is very critical what we're doing all of these pieces and we need to do them as quickly as possible. But I also want to say for the record that you can, if you are leaving a Hab center, the money does follow into the community. If you leave a nursing facility, you enter into, if you are eligible, the Missouri care options, the waiver in aging for the elderly. What doesn't follow is the GR portion, if you were in a Medicaid bed in a nursing facility, that would be the only money that could even follow because that's the GR money. And that is what hasn't been there in budgetary language to follow. But remember, if you take that GR money out of the nursing facility, and I don't want to speak for DMS but there needs to be dollars there to support the Medicaid beds for people who need nursing homes. And i, for one, who after being a long distance caregiver and having my in-laws in another family member's home for two people totally sick, 24/7, it takes three people to toilet my mother-in-law, it was very difficult but after six months of this, we put them in a nursing home. They are in a wonderful nursing home. My parents are coming to live with me in two weeks permanent, 24/7. I hope they can live with me more. They are 89 and 91. Someone said it here, sometimes there is a need for Avery structured setting and there are probably people in this audience who have had to make that horrible decision that you cannot take care of mom and dad at home any longer or they are not safe there. Or even for other personal circumstances. So I think if we have to have a structured setting, we also had better look to see what we can do to make them the best settings they can possibly, possibly be and then maximize the community setting. Until the state is able to reimburse providers, niche providers who take care of complex care people, unless we have colas built in, unless we have increased monitoring as people have moved to the community, they are on thin ice. So there has to be community capacity and expanded oversight to do what we ideally want to do. We're doing it, but it does affect pace.

MS. THURSTON: I think in review of what has been said, that we've been thinking and talking with each other but there was a pilot done in Marshall. And UEO was in charge of that, Mike McCarthy and his group. If someone knows the result of that, I don't feel that I know the results of that. So I think that we should go on and I think the department has said that, that we need -- the pilot is done and we are done with that, let's open statewide and train people to go to all the Hab centers and the nursing homes. So that's where I think we are and I hope -- I was going to bring this up in the real choices group but I think it's been mentioned that we are ready for statewide training the trainer. I did mention MOAIDD because they have been going out and talking to people about their quality of life. So I think that's a group that has already had some training. And would know how to follow protocol. We kind of repeat ourselves.

MR. TUSCHER: So I can get out of here. First I would like to say I would count your parent as being very lucky to have a supportive family. As you know, not everybody is that lucky. The second thing is I don't want anybody to hear me as saying I'm for shutting off anybody's option. I just think everybody should have the full range of options. Right now historically it is getting better but historically, the right you have had for long-term care has been in a nursing home and a lot of folks don't want to go there. What I'm saying is let's get the show on the road and at least people know they have a right. Whether we've got the systems in place out there, let's let the people know they have got a right. That's step no. 1. Unless they are informed, I'd say that is justice denied until we're letting people know. It is four and-a-half years to get to the point where we're almost ready to train the trainers so I would like to hear an implementation date at some point. And I'm glad to hear the stuff that's going on with the Hab centers that people are getting choices there. Thanks.

MS. DUNHAM: Thank you, Jim. Since you are leaving just so you know, the work groups will be meeting in October. So we may call on you or other people you know to help with this plan.

MR. TUSCHER: Thanks.

MS. DUNHAM: I would like to try to get through the rest of the action plan pretty quickly. I think a lot of the discussion we just had touches on a lot of the issues of the informed choice. That was one of the priorities under the real choices grant. In addition to streamlining the system and coming up with the computerized data, the information choice was a priority and clearly the discussion we just had, that's of interest to the community and the commission as well. So the remaining area we haven't really touched on, I mean we have in a roundabout way is the sharing the consumer options based on need, choice and capacity, including diversion strategies. And I do have a feeling I might end up often saying diversion since it is shorter and easier to say but it is getting at the whole range of options. I think our commission and our executive order is charged pretty clearly to concentrate on the home and community based side. We do acknowledge, we want people to have full access to all the choices. Were there any -- this again included looking at the amended rule to include in residence rights that they have access to the most integrated services. And revising the MDS screening to collect more data on why people are entering the nursing home and also the transitional placement policy which we have talked about. Are there any comment or feedback on those components of sharing options category? One thing I just was going to ask is, I think in the ADA, Americans with Disabilities Act, and the Olmstead decision, they do use the phrase most integrated setting instead of least restrictive environment, I was wondering if it was set with least restrictive or if we could use most integrated.

MS. MCANAUGH: We haven't written the form but that would be no problem.

MS. DUNHAM: It sounds more positive. Least restrictive, since it has the word restrictive it doesn't sound quite as positive just to match with the federal ADA language.

MS. DEATON: Along with that, I don't know if this is going to go on a web or wherever, but where we actually do have on some of these diversion, you might want to use either, use most integration and get rid of diversion.

MS. DUNHAM: That's a good idea.

MS. DUNHAM: The only other question I had and this may be in the next steps is in talking about the data for the MDS I think that will be so helpful and real important. I don't want to assume, so I just want to clarify. Would that data also be used, not just to plan policy changes but if we did identify a barrier had a solution that was pretty quick, we could use that information to resolve the situation and help the person transition back to the community?

MS. MCANAUGH: (nodded head.)

MS. DEATON: I'm sorry to keep adding things. The MDS and DMS and health should jump in here. We ought not to raise expectations too high because when I was in aging, that data can only be used in certain ways. So our little work group met and a couple of work groups and we saw the benefits of that, but the truth of the matter is there may be some prohibitions of using that data any way that is not at macro level. So to say we can use it at an individual level, it may not be possible. We may use -- may direct nursing facilities that we're hoping to use that data to individually look at the person and that sort of thing. But for us at a higher level to capture that data around individuals, I don't think so but we may at a macro level.

MS. MCANAUGH: Those are part of the discussions we want to have with Marilyn up at MU, how can we make this useful information that we can plan policy on and that can actually have some sort of impact on services we're currently providing here in the state.

MS. DUNHAM: Are there other comments on