The Department of Justice and Olmstead: Current cases and decisions

Presenter: Renee Wohlenhaus, Acting Section Chief for the Disability Rights Section DRS of the Civil Rights Division in the United States Department of Justice

April 7, 2011

Lewis Kraus: 

Hello, everyone, and welcome to the Center for Personal Assistance Services Webinar. I'm Lewis Kraus, the director of training and dissemination for the center.

Today's presentation, the Department of Justice current cases and decisions is another in a series of webinars hosted by the center.

First I want to give a little information on how this Webinar software works. The Webinar will be audio with slides. For those who want or need captions to support the audio, you can select the CC button at the top of your screen. If you prefer to listen by phone, use the telephone handset button in the audio window and you'll be connected to the teleconference or dial the number and pass code that we gave you in the e mail.

If you're using the computer audio, please uncheck your audio, that's the microphone button at the bottom left of your window. It should be gray, not yellow. I have actually disabled all those, so you probably don't have any audio at the moment. If you are on the telephone, please mute your phone.

The presentation will take about 30 minutes, maybe a little longer. We will then open the floor to questions at about 15 minutes before the hour.

Because of the size of the group, we are going to take only written questions. And you can write to us I'm going to open up for a moment and show you the window on the chat window on the left hand side of your screen. It will probably be best if you send message to moderators. There is a pull down there for moderators. If you have an issue during the talk, send a message to me or the moderators through that chat window. When there is question time, send that to the chat window as well. I'm now going to put the screen back all the way up.

Okay. The Center for Personal Assistance Services is funded by the National Institute on Disability and Rehabilitation research in the U.S. Department of Education. It is a five year research and training center based at the University of California San Francisco.

The first center was established in 2003. The current funding cycle began in fall of 2008.

The goal of the PAS center is to improve the access, quality and cost of PAS for people with disabilities to live independently, comfortably and safely in the community and to function in society including employment.

The center is conducting research in the following five areas:

• Need for PAS
• Home and Community Based Services
• Workers and Caregivers, that is the PAS Workforce
• Economics and Workplace PAS and
• And Emergency Preparedness

The Center has a few major collaborators besides the University of California of San Francisco with Charlene Harrington, as the principal investigator, the Center on Disability at the Public Health Institute in Oakland, California. The Topeka Independent Living Resource Center in Topeka, Kansas. PHI, formally known as the Paraprofessional Health Care institute in New York. Research Triangle Institute in Washington, DC, and the Burton Blatt Institute in Syracuse, New York and Washington DC.

Co hosting today is the DBTAC Pacific ADA Center, which is part of the national network of ADA centers across the country. There are ten regional centers that offer technical assistance, materials, and training. There is a toll free hot line for anyone who has questions about the Americans with Disabilities Act, which is, 1 800 949 4232. The Web site for the Pacific ADA Center is on your screen. www.adapacific.org.

Today's speaker is Renee Wohlenhaus. Renee is the Acting Section Chief for the Disability Rights Section of the Civil Rights Division in the United States Department of Justice.

The Disability Rights Section enforces Americans with Disabilities Act, the ADA, and coordinates enforcement with other federal, state and local agencies protecting civil rights of persons with disabilities.

Before joining the Civil Rights Division in 1994, Renee was Senior Trial Attorney in Federal Programs Branch of the Civil Division where she began as counsel in 1983, defending a broad variety of statutory and constitutional challenges to federal laws. Regulations, programs and policies in federal courts, excuse me.

Renee began her career as a trial attorney in the Office of General Counsel, the United States Department of Agriculture from 1980 until 1983 defending the Food Stamp and Child Nutrition Programs.

So, without further adieu, I'm going to turn it over to Renee. Renee, I'm going to open up the phone line. Renee, are you there?

Renee: 

I am. Thank you, Lewis, for the great introduction. I appreciate it. I appreciate very much the opportunity to join everyone today.

I will tell everyone up front that I am perhaps somewhat personally technically challenged. Lewis has been a huge help to me in being able to present this Webinar today.

We will go through slides on the PowerPoint. There will be time for questions at the end. I will, let you know when we move to the next slide. I apologize to others who are more technically savvy. We have the combination my somewhat limited technical skills and justice department's security screens that make these events always an adventure. But it's great to be here, and I'm looking forward to sharing with you some of the latest news about our Olmstead enforcement work.

As Lewis mentioned, I'm an Acting Section Chief for the Disability Rights Section. We have, since the passage of the ADA, been responsible for enforcement of the ADA and Section 504 of the Rehabilitation Act and other related disability statutes, most recently GINA, the newest disability statute to hit the books, and we are excited about all of the increased amount of enforcement work we have been doing the last couple of years, specifically with regard to enforcing the supreme court decision in Olmstead, which we will talk about today.

I will let you know up front the slide presentation presents sort of the basic points and we will try to expand on that with some examples of things going on in our section right now. Olmstead is, as I said, is a top priority of this administration. The Department of Justice and the Civil Rights Division and HHS Office for Civil Rights Organization are working together in an unprecedented way on an issue that has become a priority for both offices and is a priority for the White House.

Olmstead enforcement and getting folks out of institutions, whether they be nursing homes or hospitals or large group homes and living in the community independently is a top priority for us in terms of all kinds of enforcement work that's ongoing.

The ADA is the statutory basis for community integration rights and responsibilities. The Supreme Court Olmstead Decision interpreted the ADA and we will talk more about that as we go on.

We have lots of other work we do besides Olmstead work, and we try to as much as possible integrate all our work so when we have complaints that might involve Olmstead claims or issues that come in, we will pay attention to those both in whatever area the complaint raises which might be something as basic as architectural accessibilities to a hospital, let's say, that might, then, lead us to something that looks like an Olmstead problem. We are trying to pursue those complaints in the context of all issues they are raising, but with special attention now to making sure we are doing the most we can to get folks out of institutions and living independently.

We will move on to the next slide. Civil Rights Division is headed up by Assistant Attorney General Tom Perez. Tom has made it a great time to be working in the Civil Rights Division. He is supporting our work wholeheartedly and particularly the Olmstead work.

The Disability Right Section is the primary enforcer of the ADA and we coordinate work of other federal agencies. We are the crossing guards, you could say, for all the work going on in any number of federal agencies right now in this area. We are doing our very best to take down silos and cooperate and coordinate in a more effective way so complaints don't get lost and more work gets done.

With regard to this particular area of enforcement, we work very closely with the special litigation section in the Civil Rights Division. There are the Housing Section, Education Section and the Criminal Section all have work within the Civil Rights Division that overlaps with our Olmstead work and we are coordinating in ways I think that are unprecedented, including even sharing attorneys in some cases on important litigation that crosses over in various areas of interest.

Finally, last but not least, we have been doing a huge amount of outreach with U.S. attorney projects we had in this office since the '90's trying to coordinate and train and bring along and support work of disability rights enforcement in each individual federal district.

The United States attorneys have wholeheartedly signed on to this enforcement work. We are adding more offices all the time. For those of you who have historically perhaps not had a working relationship with your local United States Attorney's Office, I encourage you to reach out to them. They are all eager to hear what kinds of complaints are out there and what they can do to support the work that we are doing at headquarters. Virtually every office has expressed interest in playing a part in this important initiative.

Moving on to the next slide.

Explains a little bit about what is going on at the Office of Civil Rights at HHS. That office has for some time been active investigating and looking into complaints against states and localities and even in some cases providers of services who receive federal funds. The Office of Civil Rights is located in the Office of Secretary at HHS. They have regional offices around the country, which is also a good way for local advocates and individuals who are interested in these problems or issues to make contact directly with the federal government. They are in San Francisco, Kansas City, Atlanta, Boston, Chicago, they are in most major urban areas spread out across United States. OCR does a lot of work in this area. They also have other responsibilities in addition to the work enforcing disability rights laws. They do a cross section of work in the entire panoply of civil rights statutes. We work with them on particularly closely on 504 and ADA Title II in the areas of health care and social services. That has become the focal point for launching our shared responsibilities under Olmstead enforcement.

Moving to the next slide.

We have been working especially hard recently to get the input from HHS into the work we are doing now. We share briefs with them and share letters of findings, we talk strategy with them to make sure we are being consistent as much as possible within the United States Government. Investigations we are coordinating several of them we are using investigators from OCR and taking the information they share with us and using that to develop arguments we are using in litigation. We are sharing training resources, and we are as much as possible trying to make sure we can be one stop shopping for people who have complaints and not create obstacles.

Moving on to the next slide, the community living initiative of President Obama has laid out in this slide. We have had the Olmstead Decision since 1999. In honor of the tenth anniversary of the decision and the 20th anniversary of the American's with Disabilities Act last year, ADA, last year, the president signed his initiative on community living which gives us the extra motivation to go out and make sure we are doing the very best we can to get folks out of institutions. This is a top priority with the disability rights community and one we are taking this extremely seriously. The president has been very supportive and throughout his administration we have met with consistent support and cooperation. The secretary of HHS, the acting general counsel at HHS as well as all the folks we are working with in HUD and some of these other agencies have completely consistent viewpoints that this has to be a top priority of this administration.

Moving to the next slide.

The justice department right now is involved in this number in this first bullet keep growing. We are involved in litigation in more than 20 states right now. We have investigations in ongoing matters in another 10 or 15 states so we may or may not be in litigation some time soon in those extra states as well. OCR has pending right now and currently open 30 major Olmstead complaints and several statewide compliance reviews. Those are mainly run out of the regional offices at OCR with coordination and support from headquarters at OCR and from the Department of Justice as well. The investigations and cases cover every topic from large adult homes to hospitals, to detention facilities, to public hospitals, we are looking at nursing home issues, we are looking at any situation where a person with a disability is unnecessarily segregated from the community and not offered the opportunity to choose to live independently wherever possible.

Moving on to the next slide.

It provides the statutory authority for our work. This is the statutory language from Title II of the ADA, which is the foundation for the Olmstead decision.

You can read it. It says, "no qualified individual with a disability shall by reason of such disability be excluded from participation and/or denied the benefits of services programs or activities of a public entity or be subjected to discrimination by any such entity."

Our interpretation of the language here at the justice department is reflected in a regulation that was promulgated back in 1991 and that's on the next slide. The regulation language is there for you to read. It's a 28 C.F.R. section 35.130. It says, "A public entity shall administer services, programs and activities in the most integrative setting appropriate to the needs of qualified individuals with disabilities."

This is the language the statute and regulation or the language that the supreme court based its opinion on in the Olmstead case, which further fills out the mandate for our work in this important area.

The next slide explains another important regulation related to our Olmstead enforcement work. This regulation says that a public entity has to make reasonable modifications in policies, practices or procedures when necessary to avoid discrimination on the basis of disability. Unless an entity can demonstrate that making the modification will fundamentally alter the nature of the service program or activity. That second bullet there is the defense that a state or local government would have if it was charged in a lawsuit, for instance, that they were violating the ADA. Essentially the only defense in an Olmstead case that a state or local government has available, is that they're providing housing and support services in the community would be a fundamental alteration. What that typically boils down to in most Olmstead cases is an argument that either the state or locality has no such community services available, which I don't think that is true in any of the 50 states anymore, or, alternatively, that the cost is prohibitive that the state would fundamentally alter its entire budget structure to underwrite the cost of community living.

The good news is for us is that in virtually every state, the analysis demonstrates that living in the community is much less expensive than living in a large institution. When you do that cost neutrality comparison for providing services in the community, you often come up with factor of five or ten times more expensive to live in ICF/MR or a nursing home or whatever facility you want to mention, virtually every time you do that analysis you come out with a cost that's less in the community, if you are doing a fair comparison. Now, one of the situations we run up against when looking into these fundamental alteration defenses is, a state will sometimes say, it's much less expensive for us to provide services in the nursing home, and what we find when we look at those situations, is that typically those nursing homes are not providing any sorts of essential services that a person with a disability needs to avoid deteriorating. So that the requirements of the Medicaid act which is the basis upon which the person's nursing home is being paid for the Medicaid act says you cannot put someone in a nursing home and have them not be provided the necessary services. You get into situations when evaluating fundamental alteration where you have to sometimes go in and prove to the court that the state is not providing adequate services in the nursing home and that they are obligated to do that by law. Once they do that by law, the cost of the nursing home is indeed once again more expensive than providing those very same supportive services in the community. We find that over and over again. Obviously, these are litigation issues and problems in enforcement we are continuing to develop as we go along and bring more cases.

Turning to the next screen there's a brief summary of Olmstead decision. The Olmstead case involved two individuals, L.C. and E.W. who were confined in a Georgia state run psychiatric hospital. They sued the Georgia officials who were responsible for mental health and developmental disability system. They argued that the state's failure to discharge them from the hospital and provide them services in the community once their treating professions determined that place was appropriate violated Title II of the ADA. That case wound its way up to the supreme court. It was decided in 1999. Since then there have been a series of cases across many of the United States circuit courts and Courts of appeal and the United States District Courts, we have not seen a case go back to the supreme court challenging or refining or narrowing in any way what the Olmstead decision held in 1999. This is very much the law of the land. And very much the mandate for our ongoing enforcement work.

The next slide describes a little more detail how the Olmstead holding ruled. That there was a violation of the ADA. The holding says that states cannot unnecessarily institutionalize persons with disabilities and they cannot serve them in a situation that is not the most integrated. In other words, states have the affirmative obligation to provide services in the most integrative setting.

Turning to the next slide, talking a little about what segregation really means in this context. We hear about segregation a lot in the civil rights division, and depending on which sphere you're talking about, it could mean something different. For our purposes enforcing ADA and the rehabilitation act, segregation means unjustified isolation. We believe that that is discrimination on the basis of disability. Institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions about that person is so isolated or incapable or unworthy of participating in community life. That is the key holding and the basis upon which the supreme court issued the Olmstead decision. It is one of the common myths and stereotypes we still run into when we try to go out and do enforcement work under Olmstead. There are, not surprisingly, perhaps, a very large number of people who don't understand that virtually everyone who is in a nursing home could live in the community with appropriate support.

Finally, confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contact, work options, economic independence, educational advancement and cultural enrichment. We have a case we participated in some of you may have heard about in Alabama involving a plaintiff, Mr. Boyd, who is a young man and is trying to finish his college education. He was in a car accident, was severely disabled as a result of the car accident. Because he could not get his family did not believe they could provide him the services he needed in the community, he was placed in a nursing home before he turned 30. This young man is in a situation where he wants to go out and take classes, finish his college education. Come and go at times when he chooses to come and go just like any other 30 year old would. Because he is in a nursing home he is locked up and essentially cannot get out at night, can't get to classes he wants to take. Has all sorts of deprivation in his choices about how he chooses to live his life. These are the kinds of cases we are looking to bring and places where we're hoping to get remedies for people.

Turning to the next slide.

We say community placement is required when an individual can handle off benefit from community placement when transfer is not opposed by the affected individual, and where community placement can be reasonably accommodated, would not impose a fundamental alteration. As I said earlier, we believe that virtually all individuals in nursing homes in many places could be served in the community with the appropriate support, as long as those persons choose that alternative, we believe the states have to be about making that option available to those people.

Turning to the next slide.

We are going to start talking a little bit about some of the cases we have been working on. Just to give you a flavor of the kinds of cases we are bringing and what they involve. Olmstead applies to both public and private congregate care settings in a state's treatment system. Olmstead and early ADA community integration cases focused primarily on large, state run psychiatric hospitals, ICF/MR's and public nursing homes. We like to talk about that around here as sort of the first generation of getting folks out of institutions, moving people out of large state run mental hospitals was sort of what was happening 20 years ago, 20 plus years ago. That moved then into the next generation. Often the first move was to get people out of large state hospitals and then into large group homes. In many cases those large group homes had a lot of the same characteristics as those large state hospitals. Those often were not integrated into the community. People did not have choices about when they came and went, when they ate, where they chose to socialize, any of those things. Getting folks out of large group homes and nursing homes has sort of become the second generation of a lot of our Olmstead work.

Olmstead principles and ADA community integrations requirements apply to private facilities where the state or local government through its administration, planning, and allocation of resources promotes the segregation of individuals with disabilities in private facilities. ADA regulations cover government's administration of these programs.

The best example of this principle is the case that is pending actually right now in second circuit Court of Appeals, United States Court of Appeals for the second circuit. This is the DAI, disability advocates, inc. versus Patterson. Which I guess now is versus Cuomo. Since Governor Cuomo has taken over in New York. This case is a huge and important precedent. The district court in this case held that the city of New York and the state of New York had a responsibility to move individuals out of large adult homes in the New York area. These are facilities that have between three and five hundred people in them, terrible conditions. People not being able to come and go. Locked wards. Food, only offered at limited times. They're only allowed to stay in the cafeteria 20 or 30 minutes at a time, could not socialize with friends. Medication is being administered as people stand in line waiting for it. No opportunity much to get out of the building, and if so, generally only in large groups, on buses, that sort of thing. Very little integration into the community.

Second circuit heard argument on that in January. We are waiting to hear what the decision will be on the appeal. We are anticipating a decision coming down on that sometime in the not too distant future. I would assume before end of this year we will have a decision from second circuit in that case.

There is another case about nursing homes that was before Patterson, this is out of the district court in Massachusetts. The Rolland case. That case remains on the first circuit.

Turning to the next slide.

In addition to folks who are in institutions, Olmstead also applies to people who are at risk of entering an institution. Besides focusing on individuals currently in an institution, later cases have developed the principle that Olmstead applies to anyone who might be subject to being institutionalized because of lack of available services. Things like being on a wait list so long you deteriorate and need the support services but you cannot pay for them because you are not receiving waiver services under Medicaid and therefore you have to go into the nursing home. That is one classic example being at risk. There are situations as the bullet suggests where needed services are only offered in institutions and are not offered in the community at all. There are situations cuts in community services, adult day care cases, for example, where services are being provided in congregate situations during the day, social situations during the day, and individuals return to their homes at the end of the day, a lot of those services with tight budget situations are being cut. Particularly in California there have been a lot of cuts to adult day care, and I'm sure it's happening in other states as well because of all the desperate economic times as seen over the last couple years. Cutting those services often means individuals who could otherwise be quite successful living in the community may not be able to continue to be in the community without those services. Those cuts tend to lead to the risk of institutionalization.

Individuals are required in some states, Florida is one example, and some other states are doing it as well, are saying, we will set up a waiver program for individuals with disabilities to move into the community, but we won't consider them eligible for that move into the community until they have voluntarily gone into a nursing home 60 or 90 days. We view that as unacceptable institutionalization under Olmstead. Even short periods of institutionalization can lead to deterioration, isolation and illegal discrimination. That is the third scenario there.

Turning to the next screen.

Talking about specifically about some of nursing home cases we have been working on, OPA v. Connecticut, we filed a brief in that case seeking community services for individuals with mental illness in nursing homes and who could be served in community settings. That case, the court certified the class about a year ago in that case. Actually the state of Connecticut is now in settlement discussions with the plaintiffs there. We will see how that case turns out.

The next bullet talks about Hiltibran versus Levy a case in Missouri. I think is a really good example of some of the work we have been doing. There the state was requiring nursing home placements in order to receive incontinent supplies. If you are over age 20 and living at home, you had to pay for your own incontinent supplies if you were the same individual but living in an institution, the state of Missouri would pay for your incontinent supplies. We were able to convince the court that something as relatively inexpensive in terms of health care costs, as incontinent supplies, could have such a substantial effect of one's ability to stay in the community that it was unreasonable and illegal under Olmstead for the State of Missouri not to provide incontinent supplies to persons living outside of institutions as well. The court there said that not giving incontinent supplies to people in the community put them at risk of institutionalization. One of the important points to take from that case is, it doesn't matter, we are not talking only about large items like very expensive medical care or personal care services, even things as important and yet not as expensive, things like incontinent supplies can make the difference between whether or not someone can live successfully in the community.

Next slide talks about our involvement in some other cases. We will go quickly through those and take questions.

We have done a lot of work in Florida in a variety of cases. We had some success there. The Haddad case is one I like to share with people. It is a compelling story. Miss Haddad was injured in motorcycle accident about three years ago. She was married at the time and became paralyzed. Her husband continued to provide her basic services so she could stay in the community. Within about a year or so they got divorced. Her husband was ready to move out of the home. She was unable to get approval to join the Medicaid Waiver Program to stay in the community in Florida. Her husband continued to stay at the house even though they were divorced. After a few months, he left the house and her adult son moved back in and was providing all her personal care services. And including her bowel regimen and bathing and all personal services were being done by her adult son. He was able to do that for almost a year. Then his job situation changed. He was no longer going to be able to provide those services for her. The state of Florida told her she would need to go into a nursing home for 60 days before she was eligible for community services. We argued to the court that was unnecessary risk of institutionalization and that even 60 days in a nursing home would cause further deterioration and was illegal under Olmstead. The court agreed with us. Miss Haddad has been able to live successfully in the community. She has personal care services under the waiver program. We had a positive outcome there.

In another compelling case, in Cruz v. Dudek, we have been working with persons with spinal cord injuries in the southern district of Florida. The court there recently denied a motion to dismiss. We are continuing to litigate in Florida on a variety of issues including the Long versus Dudek case, which is written about on the second bullet on the screen, which is a class action challenging institutionalization of individuals in nursing homes who could be and want to be served in the community. This is people who are already in institutions trying to get themselves out of institutions. Cruz v. Dudek is more at risk of being institutionalized case.

Let's turn to the next slide.

We have examples of the Office of Civil Rights at HHS, complaint resolution. As I said before, HHS has been stepping up their enforcement as well as DOJ's enforcement continuing to increase all the time. They issued a letter of findings on an at risk of institutional case for lack of attendant care services. They have been doing several statewide compliance reviews based on complaints about lack of providers. And they have been working on mutually or simultaneously, I should say, working on individual complaints and also working on systemic complaints, statewide complaints. They are looking at individual complaints like the third bullet describes. An individual residing in 700 bed nursing home who they were able to get on to a waiver program as a result of their work.

The next frame talks about Olmstead plans and what the law requires. Part of what the Olmstead decision held was each state needs to develop a plan for providing more in services in the community to demonstrate that the trend is moving in the direction of getting folks out of institutions. The key decision in this area is Fred Alverson's department of public welfare in the third circuit. In that case the basic essentials of a state plan were that there had to be a time frame or a target date for placement in a community setting. It has to talk about the approximate number of persons to be discharged during each time period. There has to be eligibility standards for community based services. And a general description of the collaboration required between the relevant agencies. One of the things we are learning is that courts tend to be fairly supportive of an argument by a state if the state can demonstrate that they are taking substantial action towards coming into compliance with Olmstead. There is a recognition on the part of a lot of courts that this is not something that's necessarily going to turn on a dime. That said, there are very few states that we've investigated so far that can even satisfy the requirements under Fred L. I would say a large number of states still have not even begun to adopt an Olmstead plan to set any kind of framework or standards or criteria in place for what they plan to do to enforce Olmstead. That is an important thing for states to be focusing on. They need to be setting some parameters and setting some goals. Getting their programs in place so they can demonstrate that their waiver programs under the Medicaid act are designed to maximize the option for people to be in the community. The more we work on these cases, the more we realize that a certain amount of technical assistance and education of states is helpful. We are trying to do that along with all the other work we are doing to get more states to do what they need to be doing.

Along those lines, the next screen, talks about and provides Web sites for information that may be helpful to states and information that anyone who's interested can certainly get on the Internet and pull up and read more about what your state can do to do a better job with compliance under Olmstead and what you can do to maximize Medicaid reimbursements so that states can get people into the community and get them out of institutions.

We are working night and day, literally, around the justice department and HHS to get this initiative really running effectively and full speed ahead as quickly as we can. We are taking complaints from anybody who has an Olmstead issue they want to raise with us. If you would like to reach us the best way to get ahold of us is probably through our Web site. It is www.ADA.gov. You can find all our technical assistance materials there. You can find the Olmstead compliance reports. You can see cases we filed. You can find settlement agreements there. There is a link at the opening of the page the HHS Web site as well. That is probably the best place to reach us. If you want to send me an e mail, e mail me at Renee.Wohlenhaus@USDOJ.gov. With that I would be happy to take questions.

Lewis: 

Thanks so much for that, Renee. That was a great presentation.

I'm going to do this in two different ways. The people who are on the Webcast, if you would write to me, I'm going to open this up now. I want you to go into that chat window. If you have a question, write and send to moderator. And then you can put it in there. I have put on that chat window the address of the Web site that Renee gave us, www.ADA.gov and also her e mail address.

While people are writing their questions the people on the phone line, let's take we have to figure out how to do this so everyone is not talking at once. The people whose last names are between A. and G. in the alphabet, if anyone has a question, please ask that now.

Hearing nothing.

We will go H. to M.

And N. through S?

And T. through Z.

Okay. So we have some questions for you, Renee, here on the chat window. The first one is from John Hough of NCHS.

Thank you for an outstanding lecture. In the new healthy people 2020 objectives for improving our nation's health status during the next decade, in the chapter on disability and health objective DH 12 reads, reduce the number of people with disabilities living in congregate care residences. There are separate sub objectives reducing that number among both adults and adolescents. Can you think of ways in which Olmstead enforcement activities or the effort to find the most integrated setting might help us achieve that objective. Thank you.

Renee: 

Absolutely. I think depending on which states we're talking about, lots of states have closed their traditional large institutions, large hospitals we talked about before. What we are learning, group homes and the definition of what a group home is, varies dramatically from state to state. Group home situations typically are for adults. So we are talking about the adult population here. In our investigations we are seeing group homes of 20 or 30 and more people. And they are being relabeled. They were the kind of institutions that would be considered a nursing home or an ICF/MR, but due to creative labeling, I would say, they are deemed by some people being referred to as community integration. We believe that if you're not talking about a situation where people have the freedom to come and go make their own choices, and to live with roommates of their own choice, we are not in a situation where we satisfied Olmstead. I think looking at group home arrangements is one typical way to do a better job towards getting people integrated into the community. I might note for those of you interested HHS has an NPRM, Notice of Proposed Rule Making coming out about the definition of community. It may be published. I have not checked in the last week or so. I knew it was getting final intra government clearance. If it is not out already, it is coming out literally in days if not weeks, I think, assuming the government does not shut down. I would encourage anybody who has an interest in these issues to look at it. One of the things they are talking about is criteria to describe what it means to be community living. In other words, just because someone calls a group home community living doesn't mean it really satisfies what HHS or DOJ would say what it means to be integrated into the community. In other words, for those places where we are sticking people into these congregate living facilities that are large and not truly integrated, that's something we would like to see changed. We are working hard on that in a number of different states. In some places we are doing statewide agreements. If you would like to see what one of those looks like, we have one from the state of Georgia that's on our Web page. One of the criteria in the Georgia agreement says that we don't want to see more than in any congregate living situation, we don't want to see more than 20% of the population as persons with disabilities. Persons with disabilities who choose to live in such a facility will get an opportunity to live with persons without disabilities. Like anyone else gets to choose what kind of living arrangements they want to have. That's one characteristic. That's one place to look. Group homes. And the tangent of that is go look at HHS proposed regulation and comment on it. That will have a big impact.

In terms of the population of young people and folks under age 21. Those problems and issues come up in a slightly different way. EPSDT program which is part of the Medicaid program assures provision of appropriate medical services for people under the age of 21 living at home. What we are seeing is that a variety of different issues are coming up around that. In some states the state wants to do the same thing they do with the adult population, which is to say they will allow those services to be provided at home but only after you agree to apply for and/or be placed in a state school. That'a an unacceptable choice as far as we're concerned, for kids even more so than for adults. I think I mentioned earlier that the state of Florida with its provision saying folks have to go into a nursing home for 60 days before getting services in the community is unacceptable. It is at least as unacceptable if not more so to do that for children and young people in a community, which is what some states are doing saying you can't have EPSTD services unless you go into the state school for awhile. That's a big problem for kids.

There are the other situations for children where kids with emotional disabilities and mental health issues are not able to get the kind of full wrap around set of services they need in the community and are being told, "oh, your problems are too complicated. Your psychological or emotional disabilities are too complicated. You will have to live in some hospital somewhere, an institutional setting in order for us to moderate your meds and provide the services you need." That's simply not true in most cases. In most cases with appropriate wrap around services with available case workers who can manage services in the community services in the community, there's no reason that we need to be sending young children off to large state hospitals in another state far away from home and out of their school routine and out of their network of friends and family. We are filing a brief today in a case challenging the states' administration of EPSDT services. That brief will be on our Web page by the end of the day if you want to look at ADA.gov. That's another example of where to look for problems and ways to get better integration into the community.

Lewis: 

Great. Thank you.

So, we have several more questions. We might go longer than 12:00 o'clock. One question was, will slides be available after the Webcast. The presentation is archived. The audio, the slides, the transcript, that will be on the PAS Center Web site under Webcasts. You can go there. Also, before you leave, if you leave while questions are being answered, if you would not mind going to our feedback page which is listed on the screen, www.PASCenter/webcast/feedback.php. That will help us improve our future Webinars.

Next question for Renee is from Laurel Mildred. How can we find out more about whether our state's Olmstead plan meets the criteria of Frederick L.

Renee: 

That's a good questions, Laurel.

The first thing you can do, the CMS Web page www.CMS.gov has all states Medicaid plans. If you need to find out what your state's current plan is, you can do that on their Web page. I think I take back what I said before. It is www.HHS.gov. You have to go to CMS web page inside the HHS web page. They are moving toward complete online transparency for operation in the Medicaid program, which is a huge improvement. First thing to do is see what your state plan provides. We cannot make a guarantee 100% of everything in every state is up on those pages, but CMS is doing a really good job getting that stuff online. They have a link on their Web page if you have a specific question I think you can navigate your way around to get more information if you need it that isn't provided there.

The other really wonderful resource in most communities is to go to your protection and advocacy organizations in your local community. Their national organization is NDRN. If you want to find out where your local protection and advocacy organization is which are individually funded legal practices that do a whole lot of Olmstead work and a whole lot of work just in general educating the public about Olmstead, you can go to www.napas.org. You can find out where your local protection and advocacy organization is and they can also help with this.

Lewis: 

Yes, and let me put in a plug also for protection and advocacy information if you want those resources on the PAS Web site, PAScenter.org, you would go into the state information link. There's all sorts of information there by states including agencies that deal with PAS and those protection and advocacies or resources are listed there.

Renee: 

I can't overstate how great they are. You have a wonderful Web site too, Lewis.

Lewis: 

Thank you. Next question from Martha Carstensen.

Who can make an Olmstead complaint? Is it only those individuals who are served or can an agency like an independent living center make a complaint?

Renee: 

Absolutely. An independent living center can absolutely make a complaint with the justice department. I believe that is also true at HHS. I have not gotten that question before. HHS is also on the line. I believe the same is true there. You can send it to us and we will look into it. From individuals or groups.

Lewis: 

Next question is from Deborah Leuchovius.

Are you finding an increase in the number of young adults forced into nursing home situations as they age out of programs serving children that provide home care services? Doesn't that make them as risk?

Renee: 

Yes. That is a very good point. We have actually filed some briefs and litigation in Illinois on young adults aging out of EPSDT services once they are older than 21. We are working with states and I know CMS is doing the same thing, we're trying to come up with a better transition system so that individuals who age out of EPSDT don't go from basically having 100% of their medical needs met to, in some cases, with some waivers, even if you're lucky enough to get on the waiver, you're not getting the kind of complete coverage you get as a young adult. We have been working to try and he help do more by way of having for those individuals who have very high needs in order to stay in the community, giving states help with designing waivers that are usually for a small number of people, because we're talking about the very top percentage in terms of need, but individuals who can stay in the community successfully, those are people who are typically the most impacted by aging out of children and youth services. Although, this is a big, big priority for CMS right now and working with states. They have been doing some "dear Medicaid's director guidance" on this particular issue.

Lewis: 

The next question is from Krista Kramer.

Have there been updates to Medicare homebound regs or is that an area that is still providing services in a way that isolates people?

Renee: 

I'm not entirely sure of the reg that's being referenced there. But I do know that between Olmstead and the Affordable Care Act, HHS is rewriting virtually all their a substantial number of their regulations are being redone to implement the Affordable Care Act. Which has its own improvements, I think, in many ways in terms of enhanced services that will be underwritten under ACA for persons with disability. I cannot say specifically because I'm not entirely expert on the Medicare regs, but I can tell you that virtually everything is being looked at HHS in this area.

Lewis: 

Another question coming from Diana that asks something else that someone might be interested in.

The state of Ohio is proposing 8 percent cut in service plans for the first year of the budget and a 15% cut the second year. There are 35,000 people on this over for aged and disabled people 60 and over. Is this something DOJ would be interested in?

Renee: 

As a matter of fact today we are filing a brief today on a different case challenging a similar sort of formulaic cuts in Louisiana. There is a case down there called Pitts, and we're filing a statement of interest. It is probably being filed while I'm on this Webinar. Our view is, a state can't make across the board formulaic cuts that put people at risk of institutionalization without doing individualized assessments and having reliable information about what the consequences of those cuts will be on on particular individuals. We recognize states are in difficult financial times and both justice and CMS have been working with states to help come up with ways to meet their budget without discriminating against persons with disabilities. I think the problem that we have is when they make these across the board percentage cuts, especially when they are dramatic indeed, without looking at what the actual effect is, you, by definition, are going to be putting a large number of people at risk of institutionalization.

Lewis: 

Dale McIntosh Center is asking, regarding the transition from skilled nursing facilities to assisted living, is that considered, is that considered institutionalized on the federal level?

Renee: 

That is a good question. A lot of good questions coming in. One of the issues addressed in HHS Notice of Proposed Rule Making coming out this question of definitions and whether or not assisted living is integrated in the community. One problems is, there's not always an agreed upon understanding about what each one of these terms mean. In my understanding of what "assisted living" means, we are usually talking about a facility that's a lot like a nursing home. That may not be what other people mean when they say "assisted living." I hesitate to rely on that one term.

Notice of proposed rule making that HHS is putting out is proposing criteria for how we define community living, assisted living, so we have terms of art that we can use across the board to have some sort of more consistent way of talking about all these things. I think a lot will ultimately ride on what the outcome of this rule making process is. For anybody who has an interest in this, I strongly encourage you to get on HHS Web page and respond and provide comments on these definitional issues. These will drive a lot of decisions about Medicaid and personal care services and what it means to live in the community from now into the future.

Lewis: 

Okay. We have another question from Barbara Fowler. Is there anything that can be done for a child who went into juvenile hall from a group home, returns to a group home and then returns to juvenile hall. The child has a diagnosis of alcohol related neural developmental disorder which causes him to be become reactive when pushed. Because of his disability, he will likely be unable to get out of this revolving door.

Renee: 

This is a story I heard it is just heart breaking a story we hear a lot about kids disabilities. We recognize that even for a child who has an IEP under the IDEA that notes for the school system or whatever facility the child is operating in that they have a disability that might cause some sort of emotional outbursts or physical reaction, they are often being deferred into the juvenile justice system. It's an issue that we're looking at at justice. It's hard to say about any one particular case without knowing all the facts in the case what the right answers are. What I would urge you to do in addition to looking at our Web page, I know this is a very important issue right now that's being researched and a lot of lobbying effort is being done by National Association of Mental Illness, NAMI. I would strongly encourage you to go on their Web site. I know they have a lot of great material on this topic. That's www.NAMI.org.

Lewis: 

Okay. Next question from Donna Nichols. I assisted an individual a few years ago to file a complaint with OCR. She was under 63 and could only receive an average of 2 and a half hours a day of personal care services in her home. Only because she was under 63. The response that came back from OCR was, "because that is the rule in Missouri with DHSS." This seems like a perfect opportunity for Olmstead to change this rule. I felt OCR dropped the ball.

Renee: 

Again, it is hard for me to comment on individual cases without knowing all the facts. I think you should if you think this is an ongoing issue and something you would like us to look at, feel free to send us the complaint. You send through the directions on our Web page or to me directly at my e mail address. We will certainly look at it if this is an ongoing situation. It is not I make no guarantees on any of these individual complaints. They always vary from case to case. We have a lot of ongoing work in Missouri right now. Both in the Disability Rights Section and Special Litigation Section and we have attorneys here who could look at that complaint and give some sort of response that might be helpful.

Lewis: 

Amanda Heystek asks a question. Florida has 19,000 on their wait list for an I/DD waiver. They also did an emergency 15 to 40% provider rate cut. In three days, ten agencies have closed their door. They are moving one person to a state run DSI as "respite" because they cannot find a group home. Interested?

Renee: 

Absolutely. Send it to us. We're doing a lot of work in Florida right now. We have several attorneys who are quite familiar with things going on in Florida. Please send us that.

Lewis: 

Next one is Shelly Wood.

I work in a Day Service Treatment Facility. We have lost people to nursing homes in the past from our sheltered workshop to nursing homes because the waiver list does not move fast enough to keep them home or out in the community.

Renee: 

I'm sorry, Lewis. Is there more to that? Or is that a comment?

Lewis: 

That seems to be all that is there.

Renee: 

I think that's a common problem. The wait list moving slowly is an issue that we've been looking at. Part of the at risk of institutional cases that we have briefed in the past, state administration of wait lists is challenging on many levels. The state of Florida in the litigation we've been involved with there in the Haddad case, the woman who was injured in the motorcycle accident, we got involved in that lawsuit. The state insisted they could not even give the court numbers about how many people were on wait lists. They could not tell where people were on the wait list or how fast the wait list was moving. The judge basically said, I want you to show up I think it was a week later, a relatively short period of time, the state came back with some, although still not a perfect set of evidence, about how the wait list was moving and who was on it. They had more data than they originally provided. We are making wait list administration one of the priorities in our Olmstead enforcement work. We recognize that there are not too many states out there now who are doing a great job with management of their wait list. It is a problem on two levels. It is a problem there are not enough spaces in waiver program so the lists are goo long, and there's another problem with just the basic management of these wait lists. We are trying to look at that and get states to do a better job of managing those wait lists so people have a better idea when services might be available. We know, for example, just based on experience, that in a lot of states the DD waiver wait lists get very long because families who have children who have developmental disabilities might put their name on the wait list years in advance in anticipation of their own mortality or not being able to support their children. There are times when the wait lists have safety registrations on them. There are other times when wait lists are filled with literally thousands of people who need services immediately. States have to do a better job for their own administrative reasons and for the benefit of the people who are on the wait list. Because we are going to come and start looking at these wait lists and try to get these states to give us a better sense of how well they are providing their services. We are always interested in hearing complaints about these issues. HHS, OCR has compliance reviews in several states right now where they are looking at similar issues. We know this is a problem. It's not always a problem that has a perfect solution and given the overlap, in some states, the overlap of a series of waivers that might all have wait lists and for some of those wait list waivers, they might be overlapping wait lists because sometimes in a state a person can qualify for more than one waiver. It's a complicated problem. We certainly appreciate that. We know that states have a challenge on their hands, especially if they haven't done a good job managing the wait lists in the past. Nonetheless it an essential piece we think it's an essential piece of management of the Medicaid program and these waiver programs. And HHS is moving states in that same direction through their technical assistance and their "Dear Medicaid Director" letters, and they are offering states resources in management administration that haven't been available in the past from CMS. So everybody recognizes this has got to be a priority that we have to look at that in terms of improving the provision of these services.

Lewis: 

That's great. Thank you, Renee. I know you have another appointment.

Renee: 

Yes. I have another conference call at 3:30. Let's take another question then I should go. I have to be in another building for another meeting.

Lewis: 

Here we will take one more from Dan Florio: Would you give some clarification off the "general" duties of states to make progress toward de institutionalization under Olmstead versus the de institutionalization of individuals? I'm particularly interested in guidance for cases where home services and supports would for an individual be more expensive than a nursing home.

Renee: 

Starting with the tail end of that first, the home services being more expensive than in the nursing home is often only true because of incorrect calculation of what the costs are in the nursing home. Oftentimes care in a nursing home does not include the services that we are pricing to do the comparison for community service. That is a starting point and one that needs to be addressed and something we are looking at when we bring new cases. CMS is always happy to invite technical assistance on how to properly calculate the cost of care.

The second piece of that is that within the nursing home system and administration system, the PASRR regulations under the Medicaid Act require that before a person is actually placed in a nursing home and intermittently once they are in the nursing home, they are supposed to be evaluated for appropriate services to make sure they are not deteriorating or getting inadequate services under the Medicaid program. States have an obligation under the PASRR program, which, frankly, a lot of states are not doing a very good job with, to constantly evaluate, regularly evaluate and track what are appropriate services for a person who is in a nursing home. It's important as advocates we recognize that we have to compare apples to apples here. Just because somebody's is in a nursing home does not mean you are entitled to stop providing the kinds of services they need to avoid deteriorating or losing skills they are otherwise capable of doing. That is the first place to start.

Now, how to go about making the argument on cost neutrality for fundamental alteration defense is a complex and interesting question and one that I'd be happy to talk about at more length if you want to get in touch directly. The other place to go with a lot of really good resources on this is on the national health care health law policy web page, NHeLP.org. They have a lot of great resources about how to look at what is the proper way to evaluate cost neutrality and cost of nursing homes. Advocates in that office are also very helpful and responsive on this issue.

Lewis: 

That's great. I want to thank you, Renee, for a really excellent presentation. I think the fact we still have several questions means you have touched something with these people. For those of you whose questions we did not get to I apologize. I suspect that if you wanted to write your question in an e mail to Renee at her address that would give her a chance to answer it in a time frame where she is not rushed.

Renee: 

That would be great.

Lewis: 

Thank you all for coming out and spending time here today. Please do go to our feedback page and give us feedback. Once again, Renee thank you so much.

Renee: 

Thank you, Lewis.

Lewis: 

We will see you all at the next Webinar. Thank you. Bye bye.