1 Webcast: Eight Years After Olmstead. Presenter: Cathy Chambless. >> JACQUIE: Good afternoon everyone. Welcome to today's webcast: Eight years after Olmstead, presented by Cathy Chambless. This webcast is being sponsored by National Institute on Disability and Rehabilitation Research, NIDRR, who funds your host for today's program, the DBTAC Southwest ADA Center. I'm your moderator, Jacquie Brennan, and I'm with the ILRU project Southwest ADA Center. I'll be assisting with today's presentation. Before we get started, I want to go over a couple of housekeeping issues. For those of you on the webcast today, to submit your questions, click on the E-mail button on your screen or you can E-mail them directly to webcast@ilru.org. Also, Cathy wants to invite participants to share Olmstead initiatives in which they are involved. Cathy will pause from time to time to take questions, so please feel free to submit your questions by E-mail as you have them and we will make sure that she addresses those questions. If you have any technical difficulties today, please feel free to call us at (713)520-0232, and again thank you for joining us today, especially today on this first day after the holidays. Now I'm pleased to introduce our presenter Cathy Chambless. Good afternoon, Cathy. 2 >> CATHY: Hi, Jacquie. So I guess we're ready to go? >> JACQUIE: Ready to go. >> CATHY: Okay, thank you so much for inviting me to talk about the Olmstead versus L. C. and E. W. decision. This was a very momentous U.S. Supreme Court decision that came down in June of 1999 and it's been more than eight years now since that decision and because of the nature of that decision, we want to reflect from time to time on how much progress has been made in making advances for people with disabilities living in the community. I thought today what we would do is review the Olmstead decision. Look at it from the point of view -- first of all, looking at what did the decision say very briefly. Many of you might be familiar with the Olmstead decision, but briefly go over some of the legal concepts that were presented in that decision. And then look at what has happened, how some of those standards have been interpreted by other courts since that decision came down. We will only spend maybe a third of the time today discussing it from a court perspective, and then I want to spend another third of the time talking about it from a policy perspective from an executive -- the executive branch or the implementation side from both the federal and state government and how they have responded to this decision in terms of policies. And then lastly, I want to focus on promising practices that have been developed in the states in collaboration with the changing federal policies and what we've seen in terms of the progress made for improving opportunities for community living for people with disabilities in the states. So that's what I'm hoping to cover today. 3 As Jacquie said, I really invite people to call in or E-mail questions to Jacquie and I will stop periodically to respond to those as much as I can and also I'm really interested in hearing any involvement that you have, any initiatives that you're involved with in your state, your community that are involved with developing community living opportunities for people with disabilities. That's, I think, one of the main things I'd like to do is for us to share our experiences and how we see Olmstead being played out in our communities. To start with, I first of all want to look at the title of this decision that came down in June of '99. Olmstead vs. L.C. and E. W. I have to remember to tell our technician to move the slide. Let's go to slide 2. Is it working? >> JACQUIE: I'm not sure, Cathy. Keep talking. >> CATHY: Some of you may not know who Olmstead was. The name Olmstead is the last name of the commissioner for the department of health and human services in the state of Georgia. And this is a Georgia case that went all the way through the state courts of Georgia and the district courts and then was heard by the U.S. Supreme Court and Tommy Olmstead was the commissioner who ended up being the name on the appeal. The initials L. C. and E. W. stands for the two plaintiffs who were institutionalized in Georgia institutions for many years. Lois Curtis and Elaine Wilson, and if it were my choice, I would call this the Lois and Elaine decision, not the Olmstead decision, because these are the two brave women who put their names on the court suit and were the people who represented thousands of 4 other individuals who were unnecessarily institutionalized and said we want to go to court and are willing to go to court for our rights that we do not feel like the state is violating our constitutional rights and in 1999 the U.S. Supreme Court agreed with them. So Lois and Elaine, Lois Curtis and Elaine Wilson, prevailed in this decision; but for whatever reason, Tommy Olmstead gets his name on it. So we will refer to it as Olmstead because that is the term use in the a lot of the federal policy documents that talk about the Olmstead plan and other things that we'll talk about; but I just think it's a real interesting piece that these two women were the ones who actually prevailed and have made such a significant difference in the lives of many people with disabilities in the last eight years. So it looks like our slides aren't moving. I will try to -- there is not that much on them, but I will try to summarize for you what it is. So during this webcast, what we're going to cover, we're going to look at the Olmstead decision and the legal framework that was laid out in that decision. Some of the issues -- the key issues that the courts have tackled since that decision came down. We're going to also look at some key executive branch policies since Olmstead and then review prom tinge practices around the country and hopefully have some participation from you about your experience in trying to influence policies around this community living. So what did the Olmstead decision actually do? It was -- the decision actually interpreted a segment of the Americans with Disabilities Act. It was looking at the ADA section that talks about the most integrated setting, that people with disabilities must be served in the most 5 integrated setting possible. And this was a right laid out for them in the ADA. So the court interpreted this most integrated setting provision in regard to institutionalization, that's what the case was about, the two women who were kept in the institution in Georgia even though the professionals who worked for the institution said these women should not be -- should not have to live here. These women should not be institutionalized, they should be able to live in the community with support. And the state of Georgia said we don't have enough money to do that and so they went to court to fight it. And Lois and Elaine won. So what does this mean? This provision of the ADA, most integrated setting provision, and the Olmstead decision is covering Title II of the ADA. Title II covers government services or public services that are administered by states and local entities or any organization that operates government services by contract. So what it says is that a covered public entity, that means a state or local government, must make reasonable modifications in its programs and activities to avoid discrimination unless it can show that making those modifications would fundamentally alter the nature of its service, program or activity. This is a very important segment of the majority decision of the Olmstead decision that states must make reasonable modifications of its programs in order to avoid discrimination. And if they can't make them, then they have to show that these are fundamental alterations. I'm going to talk about those two concepts in a few minutes. Basically, the Olmstead decision established two legal principles that are 6 fundamental to public services for persons with disabilities. First of all, medically unnecessarily -- excuse me -- medically unnecessary institutionalization of persons with disabilities who desire to live in the community is illegal discrimination. So that's the first principle that if it can be shown that it's not necessary for them, then they -- it's illegal discrimination. And secondly, that public entities have a legal obligation to remedy such discrimination through reasonable modification. Yeah, those are the two points in the decision. So we've seen that in eight years after this decision came down there have -- the environment for people with disabilities has shifted in many important ways. We've seen measurable progress in adapting housing, transportation and health care programs to the needs of persons with disabilities. That's some of what we're going to talk about today. The progress that's been made is somewhat evident in the courts, but it's more evident in emerging federal and state legislative investments in community integration. So first of all I want to focus on core issues and before we go there, I want to see if there any questions. Jacquie, are we having any headway on moving the slides? >> JACQUIE: Yes. They are apparently moving in one of the players, but not the other. So it depends on if people are watching it in Windows Media Player or RealPlayer. >> CATHY: I see. >> JACQUIE: That's what I'm told. Now it has caught up and I see it in both players at this point. 7 >> CATHY: Okay. Because for whatever reason my browser just totally shut down and so I don't have anything in front of me. >> JACQUIE: Okay. Well, what number of slide do you want us to be on? >> CATHY: I would like it if you'd go to slide 9. >> JACQUIE: We'll get there. >> BOB: That's where are. >> JACQUIE: Eight years after Olmstead the environment has shifted. That's what the slide says. No, we don't have any questions in yet, Cathy. >> CATHY: So what we're trying to look at -- and the topic that I was asked to speak about today is to get a sense of how far we've come and where we're going in terms of making progress for allowing people with disabilities to live in the community and have them less likely unnecessarily institutionalized. And that's the focus. First of all, before we go into this whole arena of court decisions, I need to say that I'm not an attorney and I'm not going to cite case law for you, and it's sometimes hard to do that when you're talking about court cases or actually policy that comes down from the courts because of course courts can only give opinions on cases that are submitted to them and it's always in individual circumstances, but we're trying to glean from the whole of all of the decisions that have come down where the court seems to be going -- the courts plural seem to go going with this. So I'm going to try to summarize that, but by saying I'm not an attorney, I'll tell you that I am a generalist who has -- who likes to read this kind of stuff and 8 so I'm kind of a geek that way, but I also -- my experience is more from the administrative branch, from working in states -- in a state that administers programs particularly in the area of Medicaid. So that's my bias is the importance of looking at how policies not only Medicaid policies but state and related policies in the area of housing, transportation and other kinds of health care services support community living. With my bias being that Medicaid is (inaudible) the policy that needs to be focused on if we're going to understand supports for community living for people with disabilities. But let's start first with the court issues, and I want to focus on three concepts that have -- three terms that are important in these court decisions and how they've been interpreted since the Olmstead decision. And so we're on the next slide. It's like a title slide. It just says court issues. The three areas are, first of all, understanding the difference between reasonable modification versus fundamental alteration. And this is -- we want to look at where does the court seem to draw the line between what is required of a state to do versus what would be too much and going too far for a court to require, and that is the area of fundamental alteration. We want to look at that issue. The second issue is looking at reasonable pace, how are the courts deciding what is a fast enough pace, how quickly do states have to address their waiting lists, what are the courts saying in regard to that. And the third issue is how do you measure community integration? How do they decide if something sin tee great or not? I just want to focus on 9 those, and again I'll try not to spend too much time on these issues, but it's important to start with this as a framework so we can move on and look at the other policies because they are all based on this and what the court said. Okay, let's move to the next slide. Reasonable modification versus fundamental alteration. So the ADA requires government entities under Title II to make, quote, reasonable modifications, unquote, in programs and activities if in order to avoid discrimination. So what these reasonable modifications are, are basically things that are fairly easy to accomplish and that can be accomplished in a relatively short time frame through either formal or informal public agency action. Courts cannot compel states to make fundamental alterations. That's going too far. A fundamental alteration is what is an indispensable -- it's something about a program that's indispensable to its nature. In other words, we're talking here about institutions. If the state is saying we cannot address waiting lists because -- or we cannot address them in the manner and the pace that advocates would like because we are obligated to serve the people who are already in these institutions. If a state says that's a fundamental alteration, that we are unable to take money out of our institutions because if we did, then these institutions would close and that would deprive all of those people who are being served in those facilities -- it would deprive them of their services and what we've committed to them. So if a state makes that claim, that it would be a fundamental alteration to close institutions, then the courts cannot require that they do that. And so this is where it's important to know 10 where is the line between reasonable and fundamental. If you go to the next slide, one way that a court may require that a state may make a modification is if the state has shown to have a history of waiving its own requirements and its own program rules. If they tend to have policies that they don't always follow, that they don't -- that they always find exceptions to, then that is strong grounds for an individual in a court case to say, well, they have policies, but they don't follow them anyway, and so it's really not a fundamental alteration to expect that they will do this. That is one thing that the courts look at. So on the next slide, where it says changes that are fundamental -- so what can advocates do who say, you know, if the courts are not going tho help us in this regard because they are saying that to take people off waiting lists, to close down institutions, that's considered a fundamental alteration, what are we supposed to do? Well, that's where it requires long term advocacy for -- or advocacy efforts with the legislative branch and in the executive branch because fundamental alterations really are things that cannot be accomplished in a relatively short time frame through kind of informal appeals through the executive branch, through your state government or your local programs. And so that's where today looking at this issue of the progress made in states, it's important to decide where can we bet focus our efforts to make these kinds of changes. Is it appropriate and when is it appropriate to go to court and when we would get redress from the courts? And when is it better to look at long term advocacy with the legislative and executive branches? I want to review or look at -- if you go to the next slide -- the 11 statement in the ADA final rule. There is a -- this is a quote out of the regulations that promulgated the ADA. And it says in the integration is fundamental to the purposes of the ADA. Provision of segregated accommodations and services reel gates persons with disabilities to second class status. So that is a very strong statement and that is the actual rule that the court decision was based upon. It's very clear that Congress was saying in enacting the ADA that segregated accommodations were not permissible, that really treated people with disabilities as second class citizens and it was not -- it was the purpose of the ADA to try to abolish that kind of treatment. And so the court found in their majority opinion on the next slide, they said that states had to follow that rule, but that they gave some leeway to the states. They kind of put some boundaries around a state's obligation. When I use the term state, I'm talking about any government entity that's covered under Title II. It could be local government. It could be again a contracted program that administers state services, but they are all still obligated under these same requirements that in the decision that the majority stated in Olmstead is, first of all, that the states do not have to provide public services at all. They don't have to provide nursing home services. They don't have to provide Medicaid, but if they do, and those are state discretions, but they do, then they have to be nondiscriminatory about that in regard to those programs. The decision also said that states can't be required to make an accommodation if it would mean a potentially harmful reduction in services to other needy individuals with disabilities. So this is the out that 12 states have if they can say that by increasing community services and addressing waiting lists of people with disabilities who would want to live in the community, if that means reducing services to other individuals, then that could be a fundamental alteration and that states can defend their actions by saying that, by saying that, well, it would be harmful. However, and another way that a state can defend itself is if they have an effective plan. They call it an effective comprehensive plan. In some cases it's also referred to as an Olmstead plan that a state develops to identify individuals who would like to transfer out of institutions and into the community. The state shows they have a plan and that plan is making progress, then that can be a defense against a lawsuit under the ADA in regard to the integrated setting provision. But how other courts will interpret that language in the majority opinion, they tend to look at a broader context of the needs of all persons with disabilities and not just those individuals who are in an institution and wanting to come out or on a waiting list and wanting to have more services, more let's say Medicaid support, personal assistance, assistive technology or other assistance for them to live in the community, but this court will not just focus on the needs of those individuals, but will look at a broader context. But what it does is cases decided under the ADA and also its predecessor 504 of the Rehab Act prior to the ADA, court cases decided under these laws suggest that a finding of exclusion and segregation will trigger closer scrutiny by the courts. That a state can't say we don't have the money to do that, that that will not get them off the hook, but 13 the courts will, nevertheless, look more closely at those cases and require a state to defend themselves. Although courts will not go so far to require a state to say close down an institution -- courts have not gone that far under this provision under the ADA. So it's -- it's kind of hard to -- it's a mixed bag. Let me put it that way. The legacy of Olmstead is somewhat positive in terms of making progress in the courts in upholding this decision by the U.S. Supreme Court, but nevertheless the courts have been very, very cautious in mandating that states make fundamental changes to their programs, that they've bench more likely to defer to the state governments in terms of their own decision-making saying, well, they need to decide where the program money goes and how fast they need to address the waiting lists. So that's kind of how the courts have been responding in the last eight years or so. If you go to slide 16, there is a graph there and it's looking at how the states are doing and what I did was I just took some data on how much money had been spent by Medicaid for institutional services in comparison with community services. And we took the year 1999 because that was the year of the decision and we looked at the most recent year for -- that we have data for Medicaid institutional expenditures and you can see the trend, however slight, is moving in the right direction. That the total amount of expenditures for nursing facilities is going down. It was 80.4 percent average that was across states and territories, 80.4 percent of expenditures on nursing home and community supports. 80.4 percent went to institutions in 1999 compared to 71.4 percent in 2006. So you can see the trend line is in the right direction. However, the pace is really slow 14 and for people who are proponents of having much more funding go to institutions or, excuse me, go into community support, it's too slow, but at least we can see the trend is in the right direction and there is a number of initiatives that I'll talk a little bit about today that are helping make that happen, helping that trend. I don't know if there are any questions on those graphs -- >> JACQUIE: We have a few questions. Can I take some? >> CATHY: Let's pause and take a few questions. >> JACQUIE: Can courts order states to distribute resources differently like to ask for the state to expend the Medicaid budget for waiver programs? >> CATHY: The only way I can answer that is to say it's not whether the courts can or not, it's whether or not they have determined that to do so would be a fundamental alteration. They cannot require it. And generally courts have stayed away from mandating states to spend their Medicaid money in any particular way. They really tend to shy away from that. However, if in a court case there has been established a pattern of segregation and discrimination, if the case that is before the court shows that there is -- you know, this history of discrimination and unnecessary institutionalization, they can require that a state come up with a plan for how they are going to do that and how they are going to modify that, how they are going to address that discrimination, but as far as ordering specific Medicaid funding for certain things, that's really out of the court's jurisdiction. It's out of their authority to do so and they generally tend not to do that because that is the legislative branch's 15 authority to do that. And so courts very rarely -- well, they just don't like to do that and there is not really any examples in the case law since ADA -- or I'm sorry -- since the Olmstead decision where a court has done that. So I guess the answer is no. >> JACQUIE: Okay, in my state we have a waiting list for home and community services that is nearly ten years long. Isn't there some limit on this under Olmstead? And this is from Texas. >> CATHY: Oh, yes, Texas. Thank you. I was going to talk about Texas a little bit later. It all depends on -- if you look at the language of the court, it all depends on the -- how if the state is making any progress, if they are showing that they have a sincere and focused effort to plan to change that heavy duty institutionalization, I'll say Texas is a good example of a very highly institutionalized state that over 90 percent, at least several years ago, over 90 percent of its Medicaid funds that went to support people with disabilities who needed institutional care were going to people in institutions and I know that has changed relatively recently with a lot of work from advocates, particularly in the money follows the person initiative, but as far as if ten years is too long, the courts have not said that there is a limit. They haven't said, well, ten years is too long, or five years is too long, or 50,000 people on a waiting list is too many. They look at a pattern of action on the part of the state. Is the state making a sincere effort? Are they involving consumer advocates in the plan? Are they involving all of the partners, not just say a Medicaid agency, but all of the partners that need to be at the table to develop a 16 viable community plan such as the transportation authority, the housing authority t other public programs in the community that are necessary to provide the kinds of supports people need. Are those people at the table in developing a plan that's realistic and is the waiting list moving? Is it at all decreasing? If it's not, then I think that a court might look at that and require something, but again, the standard is not real high. It isn't saying -- the courts didn't put down a hard and fast standard, but it's more of a balancing kind of how are you doing now compared to how you were doing five years ago? Looking at the pattern over time and is it improving? So that's all I can say about that. >> JACQUIE: In the graph, does that refer specifically to nursing homes or other residential programs also, like group homes? >> CATHY: Okay, good question. And I was just going to explain that. The graph represents all Medicaid expenditures for individuals who meet nursing home level of care. The bottom part where it says under 1999 where it's 80.4 percent, that represents nursing home only. The upper part in my slide is red or it says 30.6 percent. That represents community supports. That's everything that's not nursing home but that would be for example home and community-based waiver services are included in that 30.6. So we can see that 30.6 increased to 38.6 from 1999 to 2006. So that's a real positive trend. It's just not very fast. >> JACQUIE: Right. >> CATHY: It is moving in the right direction. I hope that answer your question. >> JACQUIE: Between 1999 and 2006 what was the change in overall 17 expenditures on both community and institutions together? >> CATHY: That's a really good question, and I think what I will do is refer you to the document that I use for this and it's in the reference section at the end. You can download the slides or you'll get to it at the end, but Steve Gold put out -- it was actually an E-mail bulletin just a couple of weeks ago and he had analyzed all of the Medicaid expenditure data and the figures are actually in his report. So I'll refer you to that. I don't have that at the top of my head. >> JACQUIE: Can you comment on instances of denial of Medicaid services to people moving out of institutions into a private housing setting where many are having to seek legal advocacy to pursue administrative appeals to overturn denials? Basically, they lose services they were otherwise getting while in a care facility. Aren't those types of denials of support services, like attendant or in-home nursing care, having an adverse or negative effect on actually moving people from institutions into the community? >> CATHY: Wow, that's a complicated question. And maybe you can help me understand -- I think are you asking -- are you saying that a person who is appealing for an increase in community supports is losing the support they are getting in an institutional set something. >> JACQUIE: I think they were getting services in a care facility that they can't then get when they move to private housing. >> CATHY: Oh, yes, that's true. That's the tricky thing about making a transition is that very often -- in some instances it may be the same provider, but in most instances, it's not going to be the same 18 provider and, therefore, the transition has to be complete so that -- in other words, an individual cannot continue to receive services from the nursing facility while they are also getting services from a waiver because the way that Medicaid has k toured it and the way the states have structured it is they are two separate pots of money and they can't draw from both. I hope that -- I don't know if that answers your question. So if a person is seeing a medical doctor through the institution and they need regular physician visits and prescription medicine, but they need that same thing and maybe they want the same doctor when they move into the community, they have to make those arrangements to pay for that doctor and that prescription medication out of another pot of money. They can't go through the nursing facility to receive that. It's just the way that they are paid. It's very possible, and Medicaid will allow that, it's just that it's bureaucratic rig ma role that takes a lot of transitional paperwork, if you will, to make that happen. >> JACQUIE: So you're saying that they don't actually necessarily reduce services when they move into private housing, it's just that they have to go about getting those in a different way from a different -- >> CATHY: It depends on what it S. in the examples I used those are medical services, physician and prescription would come out of the Medicaid state plan and those would be available to an individual no matter where they live if they are still eligible. If it was other kinds of services -- >> JACQUIE: Like attendant. 19 >> CATHY: Then that's a whole different thing and it really depends on what services are allowable under the waiver. And the important thing to remember is that community services are not an entitlement. They are not -- so it really depends on the person's need and on the availability of that in the community and so it's very often -- it's very likely that that whole thing is going to have to be negotiated and made available. That's why transition is very fragile sometimes, moving from an institution to the community. It has to be lots of up front planning on the individual level and identification of those supports in that community. You can't just transfer it from the institution to the community. >> JACQUIE: Right. One more question: Can you give me an example of a case or situation where a state wasn't required to make an accommodation if it would result in a potentially harmful reduction in services to other populations? >> CATHY: Well, I think that there is a lot of examples of -- I think the fact that -- let's take Texas for an example. I think there is something like 55,000 people -- let me see here. Even though -- yeah, I'm sorry, I'm going to look this up because I think it's a good point here. That even though Texas moved out something like 11,000 individuals in five years as a result of their money follows the person, they still have 88,000 individuals who are still residing in nursing facilities. So it's like even though -- it seems like 11,000 is a lot of people to move from the institution. There is still a very high number of people who are remaining. Jacquie, you're going to have to repeat the question for me. 20 >> JACQUIE: Okay, can you give me an example of a case or situation where a state wasn't required to make an accommodation if it would result in potentially harmful reduction in services to other populations? >> CATHY: Okay, so my example was that many states have not been required to wholesale close down their institutions because of all the individuals who continue to be served in those institutions. Therefore, the amount of transfer of resources from the institution to the community is very limited unless states actually increase the amount -- the total amount that they have allocated for disability services, then they are not going to see much progress. The only way to really move -- unless you put new money into community services, you have to take the money from the existing programs and states are very reluctant to do that and the courts are allowing them to do that. They are saying they don't have to do that. So that's an example where many states have been allowed to not make those changes because they say we will be decreasing support to other individuals and we're not willing to do that. So states have been able to get a way with that and not clues the institutions. Any other questions? >> JACQUIE: I think that's it for now. >> CATHY: All right, thanks. Good. Keep sending your questions and I will try to respond to them. Let's see, we were on the graph and that's slide 16 on mine. I think you're one off from mine. Okay, the next slide says defining reasonable pace and I just want to quickly -- actually, because of the time, I think your questions are really good and I think maybe I don't need to go into 21 such detail on some of these. So I'm just going to quickly go over the next couple of points on defining reasonable pace and measuring the community integration, the next two slides say that when it comes to reasonable pace, the courts have been reluctant to say what's too slow. They've been reluctant to say as long as a state has a plan, however ineffective it, however weak it is, as long as there is any progress at all, they are willing to say that's a reasonable pace. And they have been unwilling to come into a state and say you're moving too slowly. Now, that's in the last eight years. It may be that in ten or 15 years when states haven't made much progress that courts will come in, but up until now they are not willing to say that. Another area that courts have looked at has to do with measuring community integration. Very few of the post Olmstead cases -- actually none of the post Olmstead court cases have dealt with the definition of what is integrated. An example of that is -- for example, is a person living in an apartment on the campus of a state mental hospital, is that integrated? What if a person is living in a group home? They believe they want to live in their own apartment, but they are still in the community, but they are in a group home and they feel they are not integrated. Is that enough for a court to say that person must have their own apartment? These are areas that the courts have not dealt with, and they really are areas that really beg to be interpreted, I think. But if you look at cases from other areas of disability law, the courts typically use a balancing test to arrive at an answer. In other words, they look at the evidence of that individual, if that individual has 22 been integrated, and they try to use -- I'm sorry -- if that individual has been segregated and isolated and if the court determines that there is objective evidence of that isolation and segregation, that they may find for the plaintiff that integration has not been achieved. But again, it's looking at a balancing test between what that individual wants versus what has been done in the past. So there is another whole issue in terms of individual assessments, and that has to do with if a person is living in an institution and they want to move out to the community, there is a kind of assessment they call a liberty assessment which means that a person is segregated and they want to be free from the institution. That's a different kind of assessment. In that case, the state has an obligation to identify the supports needed by that person to live in the community. This is a very individualized process to find housing, to find transportation, to find meaningful activity for that person and the kinds of health care and social supports that they need. Another kind of assessment is called a coverage assessment, and that is when an individual needs -- seeks benefits to live in the community. In other words, they want personal assistance or they need more personal assistance than they are currently getting or they can't remain living in the community. Those are different kinds of assessments, and in that case a state would look at what other individuals with comparable needs are getting and so those are -- the courts will look at those two different kind of assessments and there is a whole range of case law around those issues. 23 So just to sum up on the court side of this, the Olmstead legacy in the courts, if you move two more slides -- >> JACQUIE: The slides are moving even if you can't see it, Cathy. We're on a little bit of a delay on the posting end, but they are moving. >> CATHY: I finally got my screen back up again. >> JACQUIE: Excellent. >> CATHY: Basically the courts are very aware of the limits of their own power and they are limited by the law and by the Olmstead decision and they are going to intervene only when the totality of the facts suggest that there is great stagnation and total lack of movement in a state for I am moving opportunities for living in the community. So it has to be pretty egregious before a court is going to come in and say you will change this program, this policy, you will say this to a state. But if a court sees any kind of forward motion, even if it's very slow, they don't interfere with the state's decision and so they just basically don't interfere with that. So then that takes us to looking at the executive branch issues and if you go to the next slide, we're going to look at what's been happening on the executive branch side in regards to progress under -- since Olmstead. We're going to look at some federal policy statements that have been made. We're going to look at some community integration knish representatives that have come down from the federal government and then I want to discuss briefly the key role of Medicaid in achieving the goals of the ADA. In the past eight years, we've seen considerable interest and movement 24 at both the federal and state government levels of government in the policy making arena that really support the goals of the ADA., but they are beyond the reach of the courts. So, in other words, this is more in the area of what the courts would call fundamental alteration that have been going on in the executive branch that have been really promoted on many different levels from the federal government and the state government and we can see much more tangible progress I think in this area if we look at these specific policies. And this is where we can really gauge progress better I think in looking at improvements in community integration. So there have been some key policies since Olmstead. Again, 1999, June, the Olmstead decision was issued and in 2000 President Clinton issued five joint Medicaid director letters. They called it guidance to the state Medicaid agencies on how they could comply with Olmstead. There were a series of these letters that came out from the Clinton administration and this was in the last year of Bill Clinton's administration where they issued these directives that had the force very policy that really tried to tell states this is what -- the direction you need to be going. And so they would -- some of the interesting aspects to these letters -- actually the very first letter was issued in January of 2000. So about seven months after the decision came down, and one thing that came out of this -- it was from secretary Donna Shelayla was the secretary. The states needed to provide opportunities for individuals with disabilities and their representatives to be integral participants in the plan development. This was a very significant statement because it recognized that this kind of dramatic system change 25 was not going to be possible unless people with disabilities were at the table to help plan. That the individuals needed to have opportunity to make informed choices regarding how their needs can best be met. And this needed to happen at the planning level as well as the individual service delivery level and the very first federal policy directive that came out recognized that and subsequent ones supported that also. Following that, the last year of the Clinton administration when President Bush took office, then starting in 2001 there was a number of things that came down from the bush administration in regard to Olmstead and specifically something you may all have heard of called the New Freedom Initiative. The New Freedom Initiative was a comprehensive plan aimed at insuring that all Americans had the opportunity to participate fully in community life. So this was an executive order. It actually came out 69 of the office of the president, but it required many different state departments to work together to coordinate the use of existing resources and to modify policies. It required departments of health and human services, justice, education, labor, housing and urban development and Social Security Administration. All of those agencies were asked or were required to work together to try to implement the New Freedom Initiative and this took the form of a number of different grant programs such as the Real Choice Systems Change grants. There was a whole series of grants that came out from Medicaid. A whole series of grants came out from housing and urban development. There were one or two initiative that is came out of the Department of Transportation, and again, a lot of times you can see when new administrations take office and especially when there is a change 26 of party like there was in 2000 and 2001 when the Bush administration took over, oftentimes you'll see a lot of rhetoric, a lot of new language, new titles put on the similar initiatives and so New Freedom Initiative was not substantially different from a lot of initiatives under the Clinton administration, however, over the last four or five years -- well, eight years actually since the decision, but seven and a half years since the Bush administration took office you've seen that some of these initiatives were -- you might say window dressing -- but many of them had resources attached to them and opportunities for states to take advantage, but with the philosophy of the Bush administration being to devolve a lot of responsibility to the states, the way the New Freedom Initiative has tended to work is that it would put money out there for states to take advantage, to incentivize states to change their policies, to be more community friendly and a number of states have taken advantage of that. Other states that didn't have a lot of extra resources or didn't have a lot of maybe innovative leadership were less like lick to take advantage of it. So the routes of Olmstead have been very mixed depending on the wealth of the state and the amount of leadership shown not only from state leaders but also from advocates. I want to pause for a minute and ask for any questions on what I've talked about. >> JACQUIE: Sure. Does the fed allow for increasing a state budget, say, for example to states like Texas that receive an influx of people from Louisiana after the hurricane? What happens when there is an emergency situation like that in a state when there is already a very long 27 waiting list, et cetera? >> CATHY: Yeah, wow, that's a good question. I know that there was some temporary funds, quite a bit of funds, but again, these temporary funds that were allocated as a result of the fact that it was an emergency and the people had to relocate to many different parts of the country. And Texas was probably the hardest hit, no doubt about it, in terms of having people move both temporarily and permanently into the state. And, therefore, compete with other long time residents or longer term residents of the state of Texas for the services. So the answer is that there is often a little bit of money put into because of the emergency, but in the long run, it's going to come down to the existing infrastructure that a state has say in their Medicaid program or in their other permanent state matching programs and how much they can accommodate and the answer is it's not easy. Some of it can be alleviated by the fact that some of these people who are now coming to Texas are able to work and pay taxes and, therefore, the tax revenues rise to a certain extent and, therefore, there can be more money put into services, but in general, it just puts a greater burden on those people who are already there. I'll just use an example. I know that for about two years after Katrina there was additional funds, emergency funds, allocated say to Utah, the state where I live, for individuals that came and there was something like 400 or 500 people. Nothing compared to Texas, but there was additional funds that went to offset the costs the state had for serving those people, but that's gone away, and so now it's just whatever other programs are there. So it's a real issue. 28 >> JACQUIE: Are states required to include in their Olmstead plans a way to identify people who may face institutionalization unless they can receive services in the community? >> CATHY: States are required in their Olmstead plan to identify people who are institutionalized and I don't think they are required to -- although some states are also including people who are at risk of or who are likely to need institutional level of care, but I think it depends on the interpretation of the state. It's not -- the guidelines for developing Olmstead plans is not that specific. >> JACQUIE: Yeah. One more. Would a state be required to adjust its budget by taking money from other agencies or programs to meet Olmstead obligations? >> CATHY: The way that question is phrased, would a state be required -- and I think if you're talking about the courts requiring them, I would say no because, again, taking money from other agencies, from other state budgets, that sounds like a fundamental alteration. If you're talking about on a state level if can an agency do that, can a legislature do that, then the answer would be yes. A legislature could decide to reallocate funds from one state agency to another if they felt that the needs were greater in one area or it could be the services could be delivered more efficiently or effectively, then, yes, legislators could do that; but as far as requiring Anne Derr an Olmstead plan from court perspective, no, they would not. >> JACQUIE: I have one more -- now two more that just got hand to me. 99 percent of program funding in Tennessee goes to institutional 29 care in 2008. Advocates need advice on how to deal with these issues. What have other advocates in other states done? Tennessee had a plan formulated for years. State officials dragged their feet and the problem in my Humble opinion, the industry behind the scenes who manipulate tax dollars into their nursing homes, how do we as advocates break their grip on our resources? >> CATHY: Wow, we could have a whole webcast just on that. That's a great question. Wow. How do answer it succinctly? It's not a new problem. You really put your finger on it that there are some huge corporate interests that have a very strong investment in keeping the status quo. And that generally these are people who have money. They have very strong economic interests and you're fighting that with individuals with disabilities who tend to be poor and not have a lot of power. So the way you do that and the way other states have done it at least in my observation is you've got to unify, you've got to develop a strong coalition among your disability advocates including the community providers, including family members, and anybody else to kind of expose these economic interests. I don't know, but I would just say whatever you can do to develop a strong coalition, a very broad-based strong coalition, and go after it and be persistent and don't take no for an answer. >> JACQUIE: I understand that many state funded or contractor nursing care facilities are lobbying state legislatures to limit who gets to move out of a facility for the reason that nursing care institutions are losing money or contracts with the various agencies that support people with severe disabilities? 30 >> CATHY: And what's the question there? >> JACQUIE: There really isn't a question, but I guess if you have a comment on that. >> CATHY: Yeah. In fact, that's really along the line of the previous question, too. There is just tremendously strong corporate interests and, you know, I don't know short of major campaign finance reform, I'm not sure how you address that from a systemic point of view. Yeah, it's a universal problem. >> JACQUIE: Okay, that's all the questions I have here now. >> CATHY: Okay. Well, just to finish up on the executive branch because I want to move into the promise and practice thing, I just have a few comments on why Medicaid is really integral to the achievement of the ADA most integrated setting requirement, and that is for a number of reasons. People can access Medicaid regardless of their health status. So it's available for people with disabilities, with chronic disabilities, so that they can't be excluded because of preexisting conditions like so many private insurance can. So it's crucial in covering people who don't work, can't work, or have no connection to employer-sponsored coverage, that's one reason Medicaid is so critical. Secondly, Medicaid has a very wide breadth of coverage and it protects against high out of pocket expenditures. In other words, there is limits to how much you can pay for copays and things like that under Medicaid. So that is also an access issue. And also thirdly Medicaid is increasingly investing in home and community-based services so we can see -- we've seen in the chart that we looked at earlier that the amount of money that is 31 going to home and community-based services has been increasing and that's -- that trend is continuing up until now. So that's a really important thing is those are kinds of services such as personal assistance and assistive technology and many other kinds of therapies that don't have limits to them are not available in private plans. And so that's why Medicaid is so critical for people with chronic disabilities and long-term care needs. Fourthly, and again this is similar to the other point, is that the rules of coverage are unlike those in other typical commercial insurance coverages. For example, they don't have arbitrary coverage limits and they don't have like flat dollar limits on coverage treatment for mental illness or conditions like that. So that's a reason why we really need to direct our advocacy toward making sure Medicaid continues to be the safety net, the basic core of services for people with disabilities. So I want to move to the last section of the slide show where we talk about promising practices in states and I've pulled some examples from the web, and also just from my knowledge about things that are going on in different states to just kind very get the conversation started about what are some really interesting things that are going on in states that they are doing in order to really substantially increase the community supports that are out there. So that people can live in the community and have the kind of supports they need in order to have a descent life and they don't have to be confined to an institution. So we're going to briefly cover housing, transportation, looking a little bit at health care, specifically personal assistance and then talk a little bit about employment and health 32 care coverage. And this is going to be the part where I hope people can jump in with examples of what you're doing in your states. So I won't talk too much, but you'll have to talk through Jacquie. I want to talk first of all about just an example from Illinois. Let's focus on housing first. There is a program in Illinois that was started called the homeowner stipe coalition for people with disabilities. It was first started with funds from the Real Choice Systems Change grant and it intended to allow people to purchase their own homes by receiving counseling. They would get pre and post-purchase counseling. They would get education on being a home buyer. They would get assistance for down payment and closing costs. If they needed any modifications in their homes to make it accessible, they would assist with that. they would get classes in home maintenance and they would get some kinds of support for in-home services. They would provide individuals with information if they wouldn't to apply for a mortgage and they had say SSI or Social Security, how could they -- with that nontraditional source of income -- how could they qualify for a mortgage? How could they get money for a down payment if they had limited income? So these are all kinds of services that were provided by this home ownership coalition. And it was many, many different organizations that were partners including disability service providers, assistive technology organizations, area banks, mortgage lenders and realtors and other community stakeholders. So that's a really interesting example of communities in Illinois who started this program. Another one I'll mention and then I'll ask you for examples in housing 33 is in Massachusetts, and it's a registry for accessible housing. One of the big problems for people with disabilities who need an accessible home is how do you find a vacancy in a home that is accessible and where do you go to find that information? So in Massachusetts they set up a database where -- and they actually passed a law that property owners and housing managers had to list their properties if they were accessible units, they had to list them with this registry, and that they had to inform anyone who had notified them in the past 12 months that they need an accessible house that a vacancy exists. If they have a vacancy in one of those accessible units, they must notify people that they knew that were interested in that. And they had to hold this unit open for at least 15 days and during that time they could rent it to a person who had a disability and needed an accessible feature or they had to leave it open for at least 15 days. And that actually was a law that was passed in Massachusetts. So those are a couple of things going on in regard to housing and making homes available and accessible for people. Any comments, Jacquie, from anybody on housing? >> JACQUIE: We haven't gotten any. Sorry. >> CATHY: That's okay. I'm just seeing how this is going to work. One other thing that South Carolina did, was they actually hired a specialist in home modifications to improve the quality of the modifications that whether being paid for by Medicaid waivers. So Medicaid waivers were being asked to fund ramps and lifts and home modifications and they were paying a lot of money and they weren't sure of the quality. So they decided to hire someone with special training to actually review the 34 plans and approve the specifications for ramps and other home modifications so that the contractors could make bids, informed bids on these modifications and so that's one way of making the money be used more effectively and for the right type of changes that people needed. One last thing I'll mention about housing is that the housing and urban development agency, HUD, actually issued an executive order recently. I think it was in October of 2006 the secretary of HUD released an order saying that the public housing authorities needed to work with the various Medicaid entities, agencies, to implement money follows the person legislation under the president's New Freedom Initiative. So, in other words, sometimes it seems like -- and very often it is the case -- that federal agencies kind of run independently of each other. There is a recognition that a lot of these programs have to work together or it will never happen on the ground where people live. And so this was one area, and if you look on your slides, I made or wrote down the url references for all of these promising practices. So if you want to look at that document that describes this practice, this report, whatever, then hopefully you'll have the resources to do that from the slides. So if there is no other comments on housing -- >> JACQUIE: No. >> CATHY: Let's move to transportation. The one program that came out of the federal Department of Transportation that seems to have a lot of promise for community living for people is called united we ride. And this is a coordinated transportation program first started with an executive order -- well, actually, it started through the Department of 35 Transportation and it came out of an executive order issued by President Bush in 2004 mandating coordination among various federal transportation funding programs. So the united we ride includes 11 different federal departments working together to provide community human service transportation. And an example of where it's working really well is in Illinois and there is, let's see, 11 different counties I think it is -- anyway, there is an area of Illinois and it covers multiple counties. I'm not sure how many it is, but it is called rides, RIDES, an acronym, that provides all of the human service transportation -- here it is -- in nine counties. They coordinate transportation for aging adults, people with disabilities and the general public. So it isn't just exclusive so-called quote special needs unquote transportation, but it's for anybody who lives in these rural counties and it was originally designed to be demand response which means that people would call up when they needed a ride, but later they decided it would work better to be on a flexible route. So they run on a route just like a bus service, but they can deviate from the routes if it's within a mile or so of the route. There is certain guidelines for that. But they go to every area of the community. They go to shopping centers. They take people to doctor's offices and so it actually combines affixed route and a demand response system and the unique thing about it is that it doesn't just -- it's not just services for people with disabilities or people who are aging who go to a senior center or, you know, who have certain qualifications, but basically people who don't qualify in one of these categories pay a fee just like you'd get on a bus and pay a bus fare. 36 So it's a way of really recognizing that everybody that lives in a rural community needs transportation and this was a way of using public resources that previously had been segregated for people depending on their groups, their age group or their disability group and it's saying that everybody needs transportation, so let's have a totally en tee great system. And if anybody is on the phone from Illinois and knows about this, I'd be curious to know how well it's working because it sounds like a great system, but I do know that a number of communities have been using united we ride money for developing similar kinds of coordinations for things like just fixed route or -- what do they call it -- deviated route transportation. So any comments on that on transportation? >> JACQUIE: Not on transportation, but we do have another question. Whereas MiCASSA was designed to get people with disabilities out of nursing homes in the final months or weeks, the cost of care on exponential and people who are frail and have other disabilities need to be constantly monitored and do end up living out their lives in nursing homes. What's the option for them, especially financially? >> CATHY: Okay, well, I think in all of our zeal to help people live in their own homes, we're not saying there isn't a place for people with very frail health needs to have the kinds of 24/7 care that they need and that there will probably always be some need and there will be need for people who have those kinds of intense medical needs. And so I don't think that there will ever be a time when there is not community resources for individuals like that. I think that the issue has been that that's been the only option in many communities for so long that our communities 37 haven't evolved to develop the kinds of supports that people need in their own homes. But even individuals with very frail health and who need 24/7 companionship or care or specialized medical treatment, there are still options -- many other options for them to have that kind of care even in their own home, but again it just depends on how creative and how -- what kind of options there are in a community; whether or not that can be accommodated or not, like with telemedicine or new kinds of technology that is evolving. So I'm not sure if that answers the question, Jacquie? >> JACQUIE: I think it does. We don't have any other questions or anything right now. >> CATHY: It looks like we've got about ten minutes left, Jacquie? >> JACQUIE: Right. >> CATHY: On the slides and even though they may not be up -- people can download this afterwards, can't they? >> JACQUIE: Yes. >> CATHY: I would encourage you if you want to research some more of these promising practices on each one of the slides I've listed a url and a source for these reports. Now, you'll notice that many of these come from a particular website called hcbs.org. That's home and community-based services website. It's a program that has -- or it's a technical assistance project that has cataloged a lot of these projects that states have been developing in community services and it's just a wonderful resource for finding examples of all kinds of innovative, creative things that states have been doing. I'm not going to be able to 38 go through all of them, but one that I will talk about is the personal assistance program that's going on in Washington state and what's unique about that is that Washington state has really expanded their personal care service under the Medicaid state plan which is different from the waiver. The state plan allows state to expand beyond individuals needing nursing home level of care, but to other individuals who may or may not even be at the level of needing nursing home, but they can receive personal care in the home including some kinds of medical services as well as personal assistance. So it's called personal care service or PCS under the state plan. So the state of Washington has really expanded in that area that's somewhat unique because most states have gone with a waiver option and waivers are limited to individuals needing nursing homes on level of care. So it just allows them to be a little bit more broad-based in who they serve. I will -- let's see -- I'm skipping around here just because I don't have enough time. I also mention a big problem that is occurring all over the country, and that has to do with the shortage of home and community-based workforce individuals who are willing and are paid adequately in order to provide personal care or home-based care to individuals with disabilities in their homes. There is a huge problem with not having enough skilled workers and that the pay is not adequate that people are attracted to stay in that kind of work. And so the federal government has -- and also some foundation grants like the Robert Wood Johnson Foundation have a number of grand in order to improve direct service workforce and they call them the direct service workforce 39 demonstration grants. Arkansas is an example of where they have developed an initiative to try to recruit and attract people -- workers to profession or to the occupation of providing personal assistance and personal care to individuals at home and companionship to individuals with disabilities who are living at home and wanting to get out in the community., but it's a very, very complex issue. It has to do a lot with the demographics of the working age population decreasing, and the fact that the baby boomers who are increasingly needing long-term care are, you know, increasing demand for the workers, the fact that the pay is low, the wages are stagnant and at the low end and they are having to compete with the private sector jobs that are maybe at the low end of the pay scale but they are considered more desirable because of the pay. I mean, like working at McDonalds is sometimes seen as more preferable to being a personal assistant. So anyway, states have decided to address this problem with looking at recruitment and retention programs and developing career ladders, looking at unionizing, at developing associations of workers, there are a number of ways that states have attempted to address this and a lot of the information is contained on the websites that I list there. It's a huge issue. It's one that I'm working on here in Utah because I'm concerned about it. So anyway, I feel like the rest of this I'm just going to let you look at it and pursue that as you want, but in sum, I think I'll just make a comment that I think that there has been progress in the last eight years primarily from my perspective it's primarily occurred at the federal and state level in policy making where there has been a concerted effort to try 40 to increase the supports to individuals with disabilities living in the community. It's been very slow. It's certainly not fast enough for people like us who are impatient to see much more significant progress and much more significant change in values as far as the rights of people to be integrated and part of their community and have a quality of life that you can have by living in your own home in the community as opposed to living in a total care institution. So we've seen some progress. More needs to be made, but I think that there is some initiatives that are in progress in many states, and if you want to get involved with that, if you haven't already signed on, that you can find them and it needs people. It needs advocates who care about this to sign on to work in these committees, in your community, to make things happen. And that just would be my recommendation to -- if you want to know where to start if you haven't been acquainted with it, then go to some of these websites and do a search for your own state, your own community and I think you'll find a lot. A lot of active people involved in initiatives going on that I think you can get involved with. So I'll just leave it at that. Jacquie, do you have any other questions or any final comments? >> JACQUIE: No, I think -- we actually got a couple of questions in here at the end, but we're really out of time. So we will respond to those after the webcast. But I just want to thank you again, Cathy, for this great webcast. I think the people really did learn a lot and it was really an interesting topic to revisit so many years after its passage and see -- or after the case and see that we still have so far to go even with as far as we've 41 come. I want to tell everybody to please feel free to share the archives of today's presentation with your colleagues. They will be available tomorrow at ilru.org and please don't forget to complete the evaluation on the webcast page because we're really interested in getting your feedback. Thanks to the National Institute on Disability and Rehabilitation Research, NIDRR, our sponsor today. We hope you'll join us again on January 23rd when the webcast speaker will be Beth Sufian. The opinions and views expressed today are those of the presenter and no endorsement of the sponsoring agency should be inferred. And finally, this webcast would not be possible without the efforts of our webcast team: Rob Dickehuth for his technical expertise and our captioner today Marie Bryant. Thanks again for joining us. Have a dazzling day.