State Legislatures and the Olmstead Decision: "What's the Latest?" July 17, 2002 Presenters: Johanna Donlin and Wendy Fox-Grage Sharon: Welcome to the Olmstead Web cast and Teleconference. I'm Sharon Finney with ILRU. This event is our first shot at combining a Teleconference with a Web cast. It's exciting to make today's presentation available for so many people. I just have a quick housekeeping set of details to review with you. Our presenters will pause for questions a number of times at the end of the presentation for your questions. For those of you that are on the telephone today, the operator will give you instructions on how to direct a question. Please try to keep your questions relevant to the topic. If you're going to ask a question, please take yourself off of the speaker phone and speak into a headset or handset, and speak as loudly and clearly as possible. For those of you listening on the web, you can e-mail your questions directly by clicking on the link at the bottom of the Real One Player or sending it directly to webcast@ilru.org. Those questions I'll receive and voice them to the presenters at that time. If any one of you are needing technical assistance during today's presentation, please feel free to call us at (713)520-0232. Now I'd like to introduce our presenters for today, and to open that is Richard Petty. He's our Project Director here at ILRU, and he is responsible for the Olmstead training project Disability Advocacy in a Post Olmstead Environment. Richard: thank you, Sharon. I, too, would like to welcome you to this inaugural program in which ILRU combines telephone conferencing and Web casts so that we can better serve a wider audience in the training and support that we're providing on the Olmstead implementation project. This training is a follow-up to a major training effort that was conducted last year in 2001 by ILRU and the Brain Injury Association in which over 500 advocates and state officials were trained on Olmstead implementation strategies in five training sessions around the country. These trainings were sponsored by the Rehabilitation Services Administration, as is this conference that you are hearing today. This is the first in a series of conferences on Olmstead implementation designed to support those people who were trained as part of our project last year and other advocates and interested persons who are working to implement Olmstead in states across our nation. Our speakers today will be familiar to those of you who were in the Olmstead trainings. They really need no introduction because of the excellent presentations that they made at the training. Both of our speakers are with the National Conference of State Legislatures, and they play a significant role in work that NCSL has done on Olmstead. In 2001, NCSL conducted a study on Olmstead implementation and has recently updated that study, and that is the subject of our call--status of Olmstead implementation in states. Our first presenter is Jo Donlin, and Jo is a Senior Policy Specialist with NCSL. She's been with NCSL since 1996, focusing on health care issues and has a principal role in the Olmstead study in tracking states' activities related to Olmstead. Our second presenter will be Wendy Fox-Grage who is also with NCSL and is a Principal in the Forum on State Health Policy Leadership. She has specialized in issues of aging and long-term care. I commend both of our speakers to you, as Sharon said, we will have questions following both presentations, and you'll have an opportunity to both e-mail questions or to ask questions through the telephone conference, depending on which -- in which way you are participating. I'll also direct you to our website, http://www.ilru.org where you can follow the links to information about the presenters and about this presentation if you're not already linked there, if you're participating by phone, this may be additional information which will be useful for you. Having said that, I'd like to now ask Jo Donlin to begin our presentation today. Jo. Jo: Thank you, Richard, and thank you ILRU for inviting us to participate in this audio conference/Web cast combination. It's a wonderful opportunity for us to reach a lot of people without everyone having to travel and I hope that it's an effective way of communicating. It's certainly appealing to our constituents. As Richard said, I'm Jo Donlin. I work at the National Conference of State Legislatures where Wendy and I and our other colleague, Donna Folkemer, work on a special project to track the implementation of the Olmstead Decision. Now, I'm moving to slide no. 2. What I'd really like to accomplish in this presentation are four things: first of all, I want to summarize our survey results from the States' Response to the Olmstead Decision. This report, I believe, was up on your web site over the past week and it is on our web site, and I'm going to summarize the results of that to give you an idea of what's been going on since we last spoke to you all last year. Also I want to highlight some of the opportunities and challenges we're seeing across the country, both with legislatures and all of the other stakeholders who are trying to implement Olmstead. And although I know I'm talking to a lot of people who are very experienced with legislatures, I know there are some of you out there who may not have that experience, and I hope that those of you who do, can take some of my tips on working with legislatures back to your staff, but I do want to review some of the tips and the role that state legislatures play in the Olmstead Decision. And, then I am going to quickly summarize some of the activities that NCSL is doing currently. I'm moving to slide 3. The NCSL survey is really an ongoing project. Our first report was released in March 2001. Our second report, and this is the one that I will be focusing on, was released in December of 2001. We are currently working on a new update, and Wendy, following my presentation, is going to talk about some of the things we found out since this report was released in December. And that continuing survey will be going on over the next few months. Slide no. 4. The first thing we've realized is the bulk of activity has really been in the executive branch thus far. 40 states, plus the District of Columbia, have established task forces, commissions or a state agency work group. And this is as of December 2001. These groups, many of them have been appointed by governors, some by legislators, and some have been headed up by health commissioners. Legislators have not played a strong role in these commissions up to this point. And I have some thoughts on that later, but at this point, really, the bulk of the activity is still in the Executive Branch, and these task forces and commissions seem to have a very broad scope touching on many different topics and ideas happening with the Olmstead Decision and planning for its implementation. Slide 5: Really, the focus, as you all know out there, the two main things we're working on state plans was one of the main things that the case really talked and the decision emphasized and this is really where many of the efforts have gone, in developing these state plans. Eighteen states have some type of written report or plan, and I won't read off all of them, but four of these states really stand out to us as having what is called a comprehensive and effectively working plan. These are Mississippi, Missouri, Ohio, and Texas. These four states and these plans are available on our web site. They are comprehensive. They have budgets. They have timelines, they cover many different areas that are involved in Olmstead implementation. Eight other states have plans in the works, at least at December 2001. But it's always important to remember that states are not required to do a state plan. So some states do have some other activities going on, but the bulk have been working on the state plans. Slide 6: All of you are probably familiar with the guidance letters from CMS and OCR, and the way we judge the quality of these plans was based on those guiding principals, and I don't need to go through those. I'm sure many of you have reviewed these and know where to find them. But just for basis of what we're basing our decisions on, it's really according to what they recommend it be in the plans. Slide 7: The commissions or task forces have really made recommendations in these plans that address eight major issues: housing, transportation, expansion of waiver programs, transitioning individuals, data collection, staffing issues, assessment and then consumer agency education and outreach. And the plans are all a little bit different on these issues, and Wendy can talk a little bit more about this as well, but these are where we have really seen the crux of these plans focus their efforts and what they want their states to do. Slide no. 8: Again, I would emphasize that most of the activity has been in the Executive Branch, but in 2001 there was some legislative activity directly related to Olmstead. Missouri, Maryland, and Texas are examples of things that went on. I'm not going to read the slides to all of you, but you can see some were wage pass- throughs, working to increase wages for caregivers to try to work on some of the shortages of workers and encourage that area. Working with their waiver systems, whether they are expanding eligibility or they're actually expanding the slots and the numbers of those slots in their waivers. So that gives you an idea that states are looking at this seriously. Obviously there are some issues this year with budgets and those types of things that dampened some efforts, but there is activity and it continues to move on. Now I'll move to slide no. 9. Some of the challenges that our survey brought out, certainly budget shortfalls have been a big one this year. Many, many states are in budget holds and Medicaid is one of the issues that has been the biggest overrun. Some of the other challenges as states are looking at these plans, the housing shortage, affordable and accessible, is very minimal out there and those issues are really difficult in many states. The workforce shortage doesn't seem to be looking any better in the next couple of years as more people are retiring and there is going to be a bigger demand for nurses, nursing aides and home health caregivers. Transportation, and again, putting people out in the community will mean providing other services that they will need to do other activities in their lives. Transportation is another area where states are really looking to step up the efforts and improve the systems. And data collection has been a challenge. I think we've all heard about the woodwork effect and what is going on with that. States are very challenged to try to figure out how many people are out there that need services, how many people are out there that may be getting services, but very informally. So having good data collection has been a real challenge. Slide no. 10: There are some great opportunities going on in the states. The first is that so many people are involved and working together on this process. This isn't a situation where only one department can work and Olmstead will take place. It's taking housing; it's taking transportation, if there is an MR/DD Department or an agency, the disability advocates. Your role is so important. All of these groups are coming together to work and figure this out so it can be implemented and complete long-term care systems are being looked at, not just one piece. Also the federal government has come out with some real positive efforts to help the states. First of all, the CMS guidance letters. I referred to the January 14th one as far as putting a plan together, but those have been very helpful to states and policymakers in trying to figure out the process they need to go through. Certainly the Real Choice Grants, both sets of them, are very encouraging with budget shortfalls in the way. This has been a very promising initiative. And, all of this has been part of President Bush's New Freedom Initiative, and the latest developments in that have been the New Independence Template Waivers. And this is in slide no. 10 again. And these are an effort to help states streamline their applications for waivers, and that has been the latest development by the federal government in helping implement Olmstead quickly and efficiently. And now I want to move to slide no. 11. And again, I know that I may be preaching to the choir to many of you, but I hope you'll take some of these tips back to your staff or anyone else that is working on Olmstead. The legislature's role in Olmstead is great, and I would say if you haven't involved your legislature yet, now is the time. Why do I think this? Well, first of all, because the legislature controls the purse strings. They are the ones that have the funding and decide how to establish programs, how to enact requirements and they provide oversight into these programs. So the legislature plays a very important role in the implementation of Olmstead. Slide no. 12: Medicaid currently accounts for 35 percent -- I'm sorry -- long-term care accounts for 35 percent of all state and Federal Medicaid funds. Medicaid is definitely on the mind of legislatures right now. It has also been the biggest sources of budget overruns this year so states are looking carefully at their Medicaid, long-term care systems, and reevaluating how long-term care is funded and what's going on with that. There is no doubt that Olmstead will affect Medicaid budgets, and in some states, there are really two views about Medicaid budgets. One is that it's a black hole that people keep getting entitlements and it grows and grows, and the other is that it can be real beneficial to states because there is a federal match. So it can bring needed funding into the states. But the other important thing with legislatures is that other state programs are involved in the Olmstead process. Housing, transportation, vocational rehabilitation, those are just three examples, but it's really an integrated approach that is needed here, and legislators and their staff are playing a key role in trying to get implementation accomplished. Slide no. 13: I titled this Term Limits, Elections and Redistricting, oh my! I say this because this year there is the possibility with the combination of term limits, elections and redistricting that there could be 25 percent turn over in state legislatures. If you are in a term limited state, and I list those in slide no. 13, you have extra challenges because while term limits may take people out that are not supporting you, they also take those out that do support you. And so the continuing education process is so important, and in some states it will be tremendous this year. In the Michigan senate, 71 percent of the members will be new following the election. And in the Missouri house, 45 percent of the members will be new. I do have numbers for other states and other chambers, if anyone needs them, they can contact me, but I did highlight in my list of states -- I highlighted Idaho and Oregon. There has been a lot of discussion about what's going on in these two states with term limits. In talking with our expert on term limits, she anticipates that term limits will be back in Idaho and Oregon. So it's something again, the education and the pressure to know who is coming in and who is going out, puts extra pressure on consumer advocates to reeducate and realign legislators to figure out the best way to propel their interests. Slide no. 14: I can't emphasize enough what an important role the advocates play in Olmstead implementation. Legislatures need you, and you are experts and it can be so helpful. I did want to just offer this list of dos and don'ts. Again, many of you are experienced and know how to do this, but I want to encourage you to build your relationships early. Don't wait until session. Legislators are legislators 365 days a year. If you can take someone on a field trip or educate someone before the session starts, it's much better than waiting until everybody is online and everybody is going forward during session. That's a very pressure sensitive time and everybody is on the same playing field and Olmstead is just another blip on the screen with every other issue. So anything you can do to personalize the issue, to build your relationships early, anything you can do on that, I would encourage you to do so, but don't give up. I know it can be very frustrating, especially with budgets the way they are. So I encourage you to keep the faith and keep working hard. Slide no. 15: Really, the jury is still out. We're in early stages of implementation, which Wendy will talk about a little bit. From NCSL's point of view, we're going to continue to educate legislators to help states implement the Olmstead Decision. We'll do this through publications, through meetings, our web site, we'll also be tracking state activities. As I said, this survey will continue over the next few months. That will involve following the state plans and following the legislation. We also will provide technical assistance. This year we've had several calls from legislatures asking us to come and explain Olmstead, tell them what's going on and how they can better implement -- the full implications of the Decision. Slide no. 16: These are the resources we have for you. We have a great web site. We update it monthly. All of our documents are on there. Obviously CMS has a lot of information for the people out in the states. I encourage you to look at that site, and also the National Technical Assistance Exchange. ILRU is an important partner with Rutgers University and the Center for State Health Policy to provide technical assistance and help states implement what is a very large, broad decision that is necessary to implement due to the Supreme Court mandate, and I hope that you'll call upon us or the Technical Assistance Exchange. I've got some contact information and now I'd like to turn it over to my colleague, Wendy Fox-Grage, and she will continue with some of her thoughts on the survey as well as recent legislation. Wendy. Wendy: Thank you, Jo. And I want to thank so, so much ILRU for inviting us to speak on your Web cast, and not just your Web cast, but your very first Web cast. As Jo had mentioned,we did speak at your training sessions. In fact, I spoke at the training session in Atlanta, Georgia. So it's wonderful to be able to follow up with that talk. Today I am going to try to -- speaking of following up, I'm going to now try to follow up on Jo's presentation which is going to be tough because Jo is always a tough act to follow; but I will try my very best. Since December, we have now been making phone calls to all of our state contacts to update and share with you all what states are doing in terms of implementation and moving forward with home and community-based type services in order to comply with the Olmstead Decision. And so I'm going to share with you - unfortunately, if this talk could have been two months from now, I would have a whole lot to share with you, but I do have -- even though we're in the middle of it now, I do have information to share with you and in fact what I'm going to do is focus my talk on the legislation that we've been seeing this year in 2002. So with that, let's go ahead and get started. Slide no. 2: As Jo said before, the biggest thing that we're seeing states do with Olmstead is having some form of work group or task force or commission. Jo said as of December we had 40 states with a commission. Now we know of at least two more. So any time you see 42 states doing anything, you can clearly call that a trend and it certainly for us is awake up call and it's very encouraging. Now, when I say that 42 states at least have had plus D.C. have a task force, I'm using a very broad definition of task force. It could be a work group. It could be a commissioner who got together a work group; it could be three departments that are working on it. We're using a very liberal definition of a work group that's working on these Olmstead related activities. Slide 3: Despite all -- not all, but many of the states having these work groups, and in fact at latest count we had 18 states that had some form of a completed report or plan. Despite that, most of the plans would not be considered comprehensive, in that they either do not meet the CMS guidelines that they put out in that letter that Jo talked about, and more importantly, most of them do not contain timelines or budgets. That was really the kicker was the timelines and the budgets. Slide 4: In addition, as Jo said, states are not required to come up with a plan, even though most of those task forces are, but there are several states where their task forces decided that they're going to work on a project and not necessarily a plan and here in slide 4 I list as an example five states, and some examples are D.C. where I work, which is having a project around coming up with resource centers. And you've got Washington state which has an internal work group of state agencies. Again, they're not coming up with a plan, but they're working on significant projects. I am going to skip slides 5 and 6. We'll come back to them, but I think Jo did a pretty good job of covering kind of the major recommendations; those are really the eight major themes that we saw in the plans, but we'll come back to it. But let's go right now to slide 7, and this is a question that I get all the time when I give talks about the Olmstead decision. And that is, what has really the impact been on people with disabilities? What is the end result? And unfortunately, the news isn't all that great right now. The impact has been very, very little. And that's because most states are coming up with a plan and most of their plans were either released just this past year or about to be released, going to be released. So most strategies have not yet been implemented. Slide 8: And that's what I want to talk about -- and again, big, big question I hear all the time. Wendy, why is implementation taking so long? I know there is a lot of frustration on the part of advocates and state policy makers, too. So I want to kind of put into contact, if I can, take a step backwards and put into contact what's happening here. Unfortunately, when many of their states issued their plans, they issued them at about probably the worst possible time. They issued them recently, and kind of at the same time that we were hearing about the doom and gloom of state budgets, it really, really was a tough year this year in the states. Almost all of the states are experiencing revenue shortfalls, and it's not just the shortfalls. As Jo alluded to, it was Medicaid, in part, which we were hearing a lot about in our shop. Medicaid, just to give you an example, grew 25 percent from FY 2000 to 2002. That's compared to only a 5 percent revenue growth. So if you look at a lot of the recommendations that came out from the task forces, they dealt with Medicaid, because Medicaid is such a major, major public payer for long-term care services. So a lot of the recommendations called for an expansion of Medicaid. Unfortunately, these recommendations came out at the same time as this Medicaid cost expenditure information came out. And so states were doing the opposite this year. They weren't expanding Medicaid. As you can see from the slide here in slide 8, 47 of 49 states either took action this year or are proposing to take action to reduce Medicaid expenditures, to get down -- to control the costs there. Now, most of this dealt with reducing prescription drug costs and holding provider rates flat, but here again, just kind of bad timing. When I read these plans, it is quite clear that in order to implement Olmstead, we're going to have to increase the number of waiver slots through the Medicaid program. And we're also going to need to increase the residential settings that are available for people with disabilities. And in order to do that, you're going to need new state money. Again, this wasn't a great time to be asking for new state money. And if things weren't bad enough, at the exact same time -- and now I'm talking from slide 9 -- we had September 11th. So there were new resources when it came to health care, but a lot of those went to terrorism and state safety type issues. The ray of hope, as Jo said, was the federal System's Change Grant monies that went out to the states. That is what in fact we're seeing states using in order to implement some of their Olmstead recommendations. So let's go ahead and skip to slide 10. What I'm going to do now is talk about some of the legislation that we are seeing, and notice that it says at the top that it's some 2002 Olmstead legislation. It's important to point out that there is a very preliminary analysis because we still have some states in session and some states going into special session. However, the majority of states are out of session. So I can speak with some confidence of the trends that we're seeing. And in fact, actually as an exercise, why don't we go back -- before I continue with slide 10 -- let's go ahead and go back to slide 5, recommendations. Given what I've just told you about the budgets and kind of the doom and gloom we've had this year, you can go through the recommendations and can you see what we are seeing and what we're not seeing in state legislatures. Housing for example, we are not seeing any legislation around housing or transportation for that matter. Why? Well, with housing, you're talking -- I'm certainly not a housing expert, but you're talking about federal funding there instead of state funding in many instances, and more importantly, when we're talking housing and transportation, you're talking about implementing very, very expensive recommendations. Assessment: yes, we are seeing some -- we did see some legislation around assessments because that's relatively inexpensive, and it's so crucial to implementing the Olmstead Decision. Family centered planning and assessment, waiver program expansions, huge recommendations in the plans for expanding the waiver programs. Unfortunately, we're not seeing a lot of that -- I mean, very, very, very little in the 2002 legislation. Again, it was a matter of finances. Transitioning individuals from institutions into the community -- that would have been recommendation five. We are seeing some of that, and I think that's because of the federal System's Change Grant monies, workforce. That even though -- that legislation is quite expensive dealing with the workforce, I think we are seeing some of that and we are seeing some of that because the shortages are just so unbelievable. Slide 6: Data collection, yes, we're seeing some -- we are seeing some movement there, and I think we're seeing it within existing resources. We're seeing agencies address that. 8, yes, we are seeing consumer provider kind of education and outreach. Again, it's relatively inexpensive, especially compared to housing and transportation. So now that we've kind of gone through that exercise, let's go back to slide 10. I will tell you exactly what we are seeing. Study commissions, there are five states that -- who I have just read all of their laws very recently that have enacted legislation to have a task force or a study commissioned to put together a plan. That's New Hampshire, New Mexico, Oklahoma, Vermont and Virginia. Consumer direction -- I was really pleased to see this. We did see some consumer direction legislation. Colorado, Florida and Maine are either going to issue vouchers or they're planning to issue direct payment to people so that they can hire and pay for their own services. Again, we're seeing this because it's relatively inexpensive. Give the people the money, you're not talking about high administrative costs and at the same time it addresses the worker shortages. It lets the consumers hire their own providers. So that I think why we're seeing that. Slide 11: Again, I think I kind of went into this. We're seeing some legislation that I think resulted from the system's change grants that went out. In addition to seeing the consumer direction piece, we're seeing some nursing home transition legislation, working on transitioning people who are currently living in nursing homes into the community. Assessment: consumer information and outreach, we saw some legislation in this area. This year, thanks to legislation, which was sponsored by Dell Gat Hubbard in Maryland, nursing home residents now are going to receive a one-page information sheet on home and community-based services. Assessment: Florida, as well as Mississippi addressed the assessment issue, and in particular Mississippi's was a little bit different in that it addressed the MR/DD population, mental illness and substance abuse. And then finally on slide 12, we saw some states addressing the issue of consumers' confusion and having to go to so many different agencies and so many different places in order to get information about home and community-based services, and to be assessed. And so we saw Mississippi and Florida here are examples enacting legislation around single point of entry. Again, Mississippi, the same legislation dealt with mental health, MR/DD, substance abuse, and Florida's enacting a telephone number, 2-1-1, to provide information to consumers about home and community-based services. Just very, very quickly, slide 13, kind of the big picture items that I wanted to stress to you. As Jo said, we're clearly in the early stages of implementing Olmstead. So even though in the short run right now I haven't seen a huge impact on people with disabilities, that doesn't mean that in the long run, it won't be. I think what we're looking at here is a very incremental type situation where Olmstead is going to take years and years and that the plan recommendations in many of the states will take -- will be phased in over a number of years. The wonderful thing, as Jo said, is that we have seen activity in at least 42 states; and in these states it's basically because providers, consumers and state officials, not just from the health department, from a variety of departments, to come together and discussed these issues. The federal government has also done its share by revising its policies and offering the states all kinds of flexibility and it's given them money through the System Change Grants to develop innovative solutions and I really believe they are going to use this money and begin to implement some of the recommendations. Slide 14: I just want to end that if you all want to get more information about what's happening in your specific state or the states that are bordering yours,looking for different ideas, here on slide 14 I've listed our exact link to the study. And as Jo said, I just want to echo that, I think it is important to get involved. It's very, very important that consumers are at the table and are participating and it's not too late. I think we are in the early stages of Olmstead implementation and activities, and in fact, one of the most important things that I think we've done here is that in our report, in the very back, we've got a list of contacts for every state. So you don't have an excuse. I would suggest that you all go to this list of state contacts and call up the person in your state or people in your state and get involved because we can all benefit from your involvement. With that, I would like to turn it over for questions. Operator: Those on the phone lines if you have a question at this time, please press *1. I think there are no -- our first question comes from Damon Gregory. Caller: Good afternoon. I would like the web site address for what's going on in Florida and the surrounding states. I was unable to get that. I know you said you had it in your presentation. Wendy: Sure. I'm sorry. This is Wendy. Let's go ahead and give you the direct link. You can go directly to our web site which is http://www.ncsl.org and then /programs/health/forum/olmsreport.htm and it should take you right there and in the back there is a state by state write up so you can go into Florida and see that. The other easier way might be to go to ILRU 's website, which is http://www.ilru.org, and go to the Web cast and they have -- they have listed before Jo's presentation and my presentation, they've got the direct link there so that's just one click of the mouse there. Caller: Thank you. Jo: Also, I wanted to follow up. From our Olmstead site, you can access any of the Olmstead plans that are currently on the web. We have a list and a link to those. Caller: How updated are those sites? Jo: I mean, they are state sites. Caller: Okay. Jo: So I'm assuming they are as updated as the state's plan is updated. Wendy: The other thing is, stay tuned, because we're issuing a new study so we'll be doing a new write up of the Florida activities that will come out in the fall and so be sure to check back with us in a couple of months. Operator: We have another question, one from Kevin. Go ahead, sir. Mr. Larkin? Caller: I'm speaking in behalf of Kevin. How are you doing? I was hoping that you could repeat the web numbers that you just gave out a few moments ago. We have some hearing impaired people and we were also wondering if you have any type of transcript available of this conference that could be mailed to us? Wendy: Yes, we can do that. We will get a list from the conference call organization, and if you would let them know before you hang up today that you would like the transcript or if you want to call ILRU directly after the call. We'll be glad to mail you the hard copy transcript. Not a problem. Caller: Okay. Can you give us that phone number. Sharon: The phone number is (713)-520-0232. Caller: Could we have those web site addresses again, please, so we can try to look up Olmstead on the web, please? Jo: Okay, this is Jo. Our general website for Olmstead is http://www.nscl.org/programs/health/disabil2.htm Sharon: All of that information is listed in Wendy's presentation. It's the very last slide. So in the power point version or the text version, slide 14 has those addresses that you're requesting. Caller: Thank you very much. Sharon: You're welcome. Operator: Our next question comes from Patty McDonald. Caller: This is Patty McDonald and I'm in the state of Washington. I was just wondering how realistic is it to expect that at a federal level they may consider changing the way that payment is made for home and community services and maybe flipping it, maybe making nursing facilities and other institutional settings waivered services. And also we do have an Olmstead plan, sorry. Wendy: This is Wendy. And it's interesting because I gave a talk just last month and I got the exact same question. I can never predict what I think the feds are going to do and as Jo said, we represent state legislatures. So I am probably not the best source on this, but that, to be quite honest, Patty is not something I would hold my breath over. Caller: I understand. Wendy: I'm not very optimistic. Jo: Patty, this is Jo, in discussions in some of the meetings I've been to, that question has come up and I concur with what Wendy says. I don't think that's on the front of the fed's agenda. Caller: I've been disabled for 21 years and they said that ADA was out of reach, too. Jo: I'm not saying -- if that's the buttons that need to be continually pushed, but I haven't heard of anything dramatic changing, but again, we aren't -- and we aren't the ones who are tracking the federal information as much. Caller: This is Kathy Cochran from Washington State also with Patty, and I think that we certainly do need to keep those buttons being pushed because it's at the federal level that sets the tone, and they are setting the wrong tone when they -- when they fund or make a priority of institutional settings rather than community living, and it not only affects all of our funding streams and our ability at the state and local levels to fund community services, but it sets the wrong tone. Wendy: Kathy, this is Wendy and first I wanted to thank you so much for being our state contact for the state of Washington. Caller: You bet. Wendy: We really appreciate it. Without you folks, we really would not know what was going on at is the state level. So first of all I have to thank you. The second thing is, not that I'm disagreeing with you, but if you look at when the laws were set in place - Caller: I do. Wendy: Our long-term care system at that point in time in the mid 60's really was nursing homes. Caller: Yeah. Wendy: So realizing the long-term care system, the legislation at that time really addressed our long-term care system, which was nursing homes. Well, now as you know, we have all of these alternatives, but once legislation is in place, particularly at the federal level, it's really hard to change things. I'm not making excuses, but I just wanted to kind of point out and I'm not disagreeing with you I wanted to point out the reason why there is and it's called "an institutional bias". Caller: You bet. Wendy: In legislation - Caller: Because that's so much a barrier for all the efforts states are trying to do and we're trying not to work in an environment that's 40 years ago. Wendy: Right. Jo: This is Jo, and I will say Kathy, Patty, I don't know if you've looked at the new templates - Caller: Yes, we have. Jo: That's one effort. It's not addressing directly the institutional bias, but I think it does provide an opportunity to somewhat show an effort to simplify a waiver process. Caller: Uh-huh. Jo: I think that at the state level there is an opportunity to be more creative. Caller: Yes. Jo: And to look at things in that order may be - Caller: If I could just jump in real quick though on this last session you had mentioned how a lot of the states were having significant budget issues. Home and community services took quite a hit here in our state and the nursing facility services did not. And Caller: That's pretty standard around the nation. Caller: I don't know if that's standard around the nation, but it makes it just very difficult when you're trying to be creative. Wendy: And it's interesting for another project that we had. We looked at 2002 legislation and -- I'm sorry -- 2001 legislation and budgets, and interestingly, the trend that we're seeing since you brought up nursing homes, the trend that at least we saw last year, it will be interesting to see it now this year, is that the nursing home cases, the number of people in nursing homes remained relatively flat. However, the reimbursement rates went up. Caller: Yes. Wendy: So I think we didn't go into the reasons for it, but obviously there were a number of nursing homes across the nation that were going bankrupt and a lot of things happening, but it's interesting, the case loads nationwide, we did not see that those were going up. So I think we're making -- I think there are inroads being made. Caller: Yes. Caller: And Jo: And I also think that came out in the national data with the numbers being 71 percent in institution and 29 percent in home and community-based services as far as Medicaid, long-term care dollars, and the numbers are changing 2 to 3 percent a year. So over time there is a shift taking place. It's just sometimes so incremental that it's hard to see a change. Caller: Well, thank you. Operator: Our next question from the phone lines comes from Ann Marshall. Go ahead, ma'am. Caller: Yes, this is Ann Marshall in Alabama. Chairing our state's assessment committee and we're one of those states that you've hit the nail on the head. We're not only struggling with revenue shortfalls, we are one of those states that has to pay back Medicaid monies, that is making it really difficult for us. Let me ask you, have you -- one of the things that we're really trying to focus on in the assessment is making this part of an outreach tool to get the information about home and community-based services out to people in nursing homes and to our institutional settings. And really focusing on some training and person-centered planning and getting those embedded in state service areas. Do you know of any states that have done anything really creative as far as like agencies doing a memorandum of understanding around principals of assessment? I met with Tony Records a couple of weeks ago in Washington at our meeting. I work with them. Have you heard anything about states doing anything really, really innovative around assessment? Wendy: Jo, you want to go ahead? Jo: No, you can go. Wendy: Since you - Caller: Since you said outreach could be done with available monies and that is what we're trying to look at right now. Wendy: I know the example I gave was Maryland and they are making it mandatory that for every person going into a nursing home is they get a one- page information sheet, and what I need to do is, quite honestly, I'm not in my office right now. What I need to do is go back in my office and in fact -- in Jo's very last slide, you've got my contact information and I can go state by state and give you some examples of some innovative things happening, but what I can tell you off the top of my head is that I think you're on kind of the same track as a lot of other states, and you know, I was tending -- when I first read the plans I kind of went, okay, assessment. Okay, and then you've got data collection and then you've got consumer information and outreach, and really what it is -- and single point of entry, making sure that information referral, and really Caller: We've got all of those pieces into the draft. Wendy: And I think that you hit -- you're absolutely right on. What I think states are doing is they're combining all of that. Because they all feed into each other, you know, you're looking at not just assessment, but you're looking at also at the same time assessing -- you're not only doing family centered assessment, but you're doing planning and that's consumer information. And you're doing it in a way that you're not making it go to a million agencies. So again, I think that you are going where a lot of states are head nothing that direction and ki put you in some contact with some states that have done it well. Wisconsin is the one right off the top of my head -- because they've been inundated with their family care program. It's a much bigger program and half of their family care program deals with information and referral and assessment and they have an 800 number and all of that good stuff. The second part of their program is a pilot program in some of their counties dealing more with kind of a managed care component. But it would be interesting for you maybe to follow their -- the information referral part. The other state that comes to mind is Michigan. They have a program called Mi Choice. It's spelled MI like Michigan, and then Choice. It's kind of like information referral over the phone line and not just here are some contacts, but people can request an assessment. So I can give you more information though. Caller: Great. Jo: And I wanted to follow up on what Wendy said. The piece of assessment has so many implications and as these plans are taken to the legislatures, because the assessment piece in these kind of budget times, legislators are going to want to know what are we dealing without there? What is going on? How many people? And so the assessment piece really is I think a key in these plans, and obviously states and the data collection and some of the systems that are in place to collect it, it's a struggle right now, but I think as Wendy said, you're on the right track and really working with that because it's a piece that is going to answer many of the immediate legislative questions. Caller: Well, I think one of the most important things we did in Alabama -- we got one of the Robert Wood Johnson Foundation planning grants. One of the biggest -- one of the biggest accomplishments I think was done is we do have strong consumer and family participation. And on my committee, it's at least 50 percent and I'm a consumer and family member also and working with the protection and advocacy program. We've sort of pulled every piece of it together which hasn't made the discussions very easy, but I'm very excited about that part, but the assessment piece was beginning to overwhelm me a little bit, but I'm beginning to get some hold on it with the discussion that you've had today. It's been very good. Jo: And it also might be worth talking with Richard Petty at a later date or Susan Reinhardt. Maybe they've seen some questions on this in their technical assistance that we haven't seen. That's just another resource for you. Caller: All right, thank you Wendy: And I want to give you some information on California, too. Sharon: Jo, and Wendy, let me get some of these e-mail questions out because they're bombarding me and we'll go a different direction. There is a question that might be of use to many of you in the audience, and does NCSL receive any type of funding from CMS or other sources to serve as a resource regarding Olmstead implementation and, if so, how could we access your consultation or services? Wendy: That's a great question. We do receive grants, and in fact, we are working now under a grant from CMS on the Olmstead Decision, and it funds many of our activities, and we are available to speak to groups, to consult, and in fact we have definitely done so. In fact, with the training session that is we spoke about earlier, and so please feel free to call either Jo or me, and in fact you've got our contact information on Jo's last slide, contact information. Please give us a call and we'd love to help out in any way we can. Jo: And if I could mention one thing on that, we view your role as very important in this process, and you all may have information that we don't have, and we want to, you know, be involved and be accessible to you all. So I can't emphasize, this will not happen without effective communication from the consumer advocates, and we want to help you figure out how to work with your legislature, if that's the question, or whatever the case may be, please contact us. Sharon: Thanks, Jo. Another question is, are you tracking any relationship between increases in community-based care and reduction in nursing home beds? Wendy: No, we're not doing that. Because we represent the state legislatures, we're following really the public policy and the state funding, but we're not -- we're not following those hard data sources. Sharon: All right. This is an OSHA question, and it's regarding OSHA regulations that have been waived for employers who allow disabled staff to work at home. Is this a step forward or back for people with disabilities and would workers at home not be covered by these regulations? Jo: I am not an employment expert on the OSHA. I think that that is somewhat out of our realm. Sharon: Okay, great. Wendy: It's certainly out of my realm, too. Sharon: Okay, another one is please explain more about how vouchers or consumer directed payments for care go with work shortage issues. Wendy: It's Wendy again. I can address that. The way that these programs were described in legislation is that the consumers would receive either a voucher or would receive direct payment, and then could use those funds to either hire their own workers or pay directly for their own services. It addresses the workforce issue because under the traditional service programs, there is much more administration involved. The consumer does not have the choice and flexibility, for example, to hire a family member, a friend, a neighbor. With these programs, it not only gives the consumer that choice and flexibility, but it also, from the state perspective, puts on them the -- they are the one who is directly hiring and firing the worker. So therefore, the state wants relief from that activity. Now, it's important for me to say the state at the same time -- in the legislation and in fact there are several consumer directed programs throughout the states. There is some oversight by the state, but for the most part, these programs address not only workforce issues, but really what we're hearing from many consumers, and that is that they want to have more control. They want to be able to hire the people that are caring for them. Jo: And just to expand on that, the oversight usually comes through a fiscal intermediary that's handling the tax part of it and taking some of those responsibilities, but certainly the hiring and firing and the expansion of the Job pool, of the applicant pool, you know, traditionally they are having to work through home health agencies who are scrambling to find employees, and it's really a very effective way to increase the applicant pool, give more empowerment to the person with the disability and also help them work with a fiscal intermediary that can help them with employment taxes and workman's comp and any of those things which in the end usually will save the state some money. Sharon: I have another question. This is from Oregon. Oregon is very good at funneling money away from nursing homes. However, we can't seem to get the legislature or governor to actively invest in alternatives to nursing homes. Funds for home care workers are scarce. Is there any way that we can use Olmstead to motivate the state to positively go forward to provide for our care? Jo: I can take a shot at this one, Wendy to start. Wendy: okay. Jo: I think the first thing is that Olmstead is an option. It's been a mandate by the Supreme Court. I mean, the audience to this Web cast certainly is much more voiced in their advocacy and how they approach that, but part of what we are educating legislators about is to say Olmstead is here, whether you think it's a good thing or a bad thing, it is now a mandate to the states that must be dealt with. That, to me, is a message that we've been trying to give. Also the message that Olmstead is not just for people with mental retardation or mental illness, it is for all people with disabilities, and it has a very broad scope to address and encourage states to look at their long-term care systems. But Olmstead is not optional. Implementation is a mandate and the office for civil rights is implementing it and tracking what states are doing. Sharon: Wendy, did you have anything - Wendy: The only thing I would add is I believe that Oregon is one of the states we very recently contacted, and somehow in my head I think there is something going on. It's not coming to me -- I'm not sitting at my office right now. So if the person who asked that question, if he can give me a call at the office again, my contact information is in Jo's slide and I can kind of tell you what exactly that I know of is happening in Oregon and which way it's moving in that regard because I think -- I believe -- I mean, don't quote me here, but I believe advocates are using the Olmstead decision to try and move things a little farther along? That area. Sharon: this is regarding the National Governor's Conference that just took place. They mentioned that Medicaid budgets were addressed in that conference, but was Olmstead addressed at the conference? Jo: I don't have any information on the National Governor's Association's meeting. I don't know exactly what was addressed. Wendy: this is Wendy. I do know as the person e-mailed, I do know that they did address that, but I don't know about Olmstead, either. Like Jo, I didn't go to that meeting. Jo: If I could follow up on that Sharon real quick. At our meeting, we will address Olmstead and home and community-based services in the Medicaid session. And we are also having a smaller session dealing specifically with Olmtead, which will be with the Olmstead advisory group. So we are addressing it several times at our annual conference next week. Wendy: Our meeting will be in Denver next week. At NCSL we have an advisory group specific to the Olmstead Decision. I don't know whether the governors did or did not address it, but thanks, Jo, for following up on that. We certainly are. Sharon: I wanted to see if there were any other callers that might have questions. Operator: we have another question from Patty McDonald. Caller: Hi, we do have a program where individuals under the waiver can hire their family members or, you know, the provider of their choice, but it's through case management and so on. And also there is a state law that has disqualifying crimes for workers in any part of the industry, including some institutional industries. I'm just wondering, do you know how many other states have the requirement for background checks to be run and do they have a list of disqualifying crimes? Wendy: Patty, this is Wendy. In my office I have the list of states and the statutes of the states that require criminal background checks on nursing home employees. But I don't - Caller: Not home and community-based? Wendy: I don't have that, but I'm sure somebody must have -- I'm sure somebody must have collected that information. But our organization has not - - is not an original source for that. We've not gone out and actively collected it for each state, but it might be out there somewhere. So it's just a matter of -- Patty, why don't you call me in the office and I'll see if I can make some phone calls and see if I can get that for you. Caller: Sure. Thank you. Jo: Patty, this is just anecdotal, but in the reading that I've done on some of these consumer-directed issues, when I've read about the fiscal intermediaries, that has been something that's mentioned that they help with the background checks. So I don't know if that's a formal statute or, you know, a request, but it's out there like Wendy said, she can help you find that. Caller: Thank you. There are many people that are for background checks and so on, and then of course there are advocates that find that could also be a barrier, especially when it's a family member who has a disqualifying crime and so on. So here, it's a state law, so it's not much of a choice there, but I was just wondering if any other states did that and what their experiences were. Wendy: Patty, I'm glad you just said that. You took the words out of my mouth. You hit upon it with the background check. You've definitely got the plus and the minus. So the issue is very tricky. Caller: Yeah, it is. Sharon: Do we have any more callers? Operator: There are no more questions from the phone lines. Sharon: Okay, I do have several other questions that have come in, Wendy and Jo. The issue of permits of approval or certificates of need for institutional facilities and home health impacts states efforts to better balance institutional and community-based services. Has the NCSL done any research on how states are handling POA/CON. And how many states have done away with that requirement? Wendy: we haven't done that work. I'm sorry, it's Wendy. We haven't done that work, but we -- there is Tom Piper who is the head of the CON Program in Missouri. He collects like on a quarterly basis information on all of the certificate of need (CON) programs, and not only with nursing homes, but home health, et cetera. And he would have the latest, and so whoever again sent that e-mail, if you want to contact me, I can give you the contact information or give you the latest on each of the CON programs. Sharon: We're about coming to a close. Are there any other callers that have questions? Operator: again, if you have questions from the phone lines, press star 1. Wendy: I will say as a follow-up while we're waiting for people to ask questions, if we have any last minute ones, I will say with the CON, in terms of CON's on nursing home beds, we are not seeing a reduction those. For the most part states are keeping an eye on those in terms of nursing home beds. That has been a useful lever for states or mechanism in order to control the supply. Operator: We have a question from Mike Connors. Caller: Yeah, my question was as you say the Olmstead Decision is law of the land, but implementation has been very slow, and states are struggling to deal with their Medicaid budgets. When do you see things picking up and what things need to change in order for implementation to actually happen the way it needs to? Wendy: Hi, Mike, it's Wendy. I don't -- I'm going to be kind of pessimistic here. I don't think that things are going to pick up next year because from all of the reports that we've been getting at our shop, from our fiscal officers, your fiscal year 2003 looks like it could potentially be worse than this past year. So I'm not hopeful for a huge financial turn around in the short term being next year. And so given that, I think you're going to see implementation of plans, but I think you're going to see implementation with the recommendations that are fairly low dollar or that state agencies can do within their existing budgets. So like this year, the reason I really talked -- about I mean my whole purpose talking about the 2002 legislation that we've seen so far, I think this is clearly going to be a trend. I think you are going to see states continuing with the study commissions. Again, it's me looking into a crystal ball, but I -- I mean, my guess is you're going to see more consumer direction. It's very popular with consumers. Advocates are pushing it. It deals with the worker shortages. It's relatively inexpensive so I think you'll see more vouchers and direct payments for services. I do think you're going to see the ray of hope, the new money that we got this year for Olmstead was through the federal System's Change Grants. So I think you'll see some kind of exciting demonstration type projects, and if any of those can prove to be cost neutral, I think you might see some states expand those. I think we're going to see a lot more, like the woman from Alabama, she just discussed their task force that they're having dealing with assessment and consumer information, and outreach. I think that's a trend. I think we're going to see states doing that in the short term, too. So I think in data collection, those types of things, I think we're going to see in the short run. Caller: So creative ideas, but slow implementation? Wendy: I think so. Caller: Can I ask one other quick question? Wendy: Sure. Caller: You indicated that two additional states have developed task forces or study groups of some sort. What are the two newest states? Wendy: In legislation I know it's the five states that I have listed. It's - Caller: I'm talking about -- I don't know that necessarily you had indicated there were 40 states in total, but since December you had got responses back from a couple of additional states that may or may not have been established through legislation. Wendy: Right, and of those, I need to look at my list of 40 from the last one and compare it were these five states, but it's two of these five states that are listed, I just need to compare my old list with this new one. The difference is -- the reason we've got five listed here instead of just two is some of the states had a more informal work group or task force and they decided to pass legislation. So three of those -- three of the states listed made it more formal and Virginia, I know, because I live in the state of Virginia. I know Virginia is one them -- will be one of the brand new commissions that didn't have anything before. And so that leaves one of the other four states there that would be it. Caller: Thank you. Jo: Mike, I wanted to give you a few numbers in what Wendy had mentioned and one big number that our fiscal department, to give you an idea of what's going on out there, as far as income tax returns this year, which is another real indicator of funding for states, as you can imagine, they were down 26 percent in the revenues that were brought in from income tax returns. So we're estimating that the budgets that were approved this year, most states will be going back to their 2003 budgets and looking at them again with the fact being that the revenue did not come in on April 15th. Caller: Because a lot of that means that since there is not going to be a lot of new money available, that the money that needs to be available to implement Olmstead is going to have to come from existing institutional care rather than just fresh new dollars? Jo: I think there are not going to be very few or any fresh new dollars, especially in the Medicaid area. And so if there are ways to transition that money in states that have -- where there is a lot of money in institutions, that -- you're absolutely right. That may be. How that is done will really vary across the nation. Wendy: and Mike, this is Wendy. I'm not even very hopeful that we're going to see that happen. I know a lot of people heard it -- I haven't bought into it is my problem. I heard a lot of people say we need to shift our dollars, we need to close institutions and use that money and shift it more into home and community-based services. You know, I wish it was that easy, but that's really an over simplification because you can't just close down facilities and leave people without any kind of home and community-based service infrastructure or services. And then say, okay, now we built that up. Unfortunately, in the short run, I think you've got to develop your home and community-based service systems and supports and have both going for a while in order to shift -- in order to shift people and move to more of a home and community-based service setting. And then you can begin to analyze closing down institutions, but you can't just close down institutions and leave people with nothing. Caller: I wasn't trying to suggest that through my question, but if you have to build a home and community-based service system before you can help people getting out of institutions and there is no money available, you've got to start somewhere. Jo: Absolutely. Wendy: Mike, to answer your other question, i just looked at the 40 states we had before that we were saying had task forces versus now the 42, the two new ones are Vermont and Virginia. Sharon: Jo, Wendy, Thank you both. We have just about run out of time today so we'll have to wrap. Wonderful Job, the both of you. I wanted to let every one know that today's presentation will be archived tomorrow at our web site at http://www.ilru.org. We hope you'll join us again. We have two additional Olmstead Web cast/ teleconferences slated for later this year. September 25th, we're going to be addressing assisted living versus community living, and then October 9th, we're going to talk about nursing home transitions. We'd love to have your feedback. So please fill out the evaluation form on our Web site, and again, we want to thank everyone, especially those people who made this presentation possible, our funder the Rehabilitation Services Administration that's a part of the U.S. Department of Education, and this Web cast would not be possible without the efforts of our ILRU in-house staff, Marj Gordon, Dawn Heinsohn, Rachel Kosoy, Mark Richards and the technical expertise of Rob Dickehuth and our real-time captioner, Marie Bryant. Thank you again and have a good day. Wendy: Thank you. Jo: Thanks.