Understanding the New CMS HCBS Settings Rule: An Introduction & Overview

Hello and welcome. I think we are going to get started now. This is the CMS home and community-based services & settings regulation, an overview and introduction. We have a great program prepared for you today. My name is Ari Ne’eman. I run the Autistic Self Advocacy Network, national advocacy group run by and for autistic adults working on advocacy on the broader intellectual and developmental disability community. This Webinar is sponsored by a wide array of partners, ASAN, the collaboration for the promotion of self-determination, the three major DD network partner associations, the Association of University Centers on Disability, the National Disability Rights Network, and the National Association of Councils on Developmental Disabilities. It is the first of five Webinars we’ll be
doing. Each of them will be Tuesdays from 1:00 to
2:30 �Eastern start time. And it is my pleasure to welcome you and provide a little bit of background as to the history leading up to the new settings regulation. CMS has been working on the issue of defining home and community-based services for quite a long time. This process formally began in June of 2009 when CMS issued an advanced notice of proposed rulemaking which solicited comment from the broader community on what types of services should be considered home and community-based and what types of services should not fall into that category. From the very beginning, CMS was acknowledging and articulating many of the concepts that we see in the final regulation. For instance, in the 2009 AMPRN, CMS was talking about the distinction between provider-owned and non-provider-owned controlled settings and recognized that the separation of real�estate and service provision was one factor among many that might influence decisions about what standards a provider needed to meet in order to be considered truly home & community-based. In 2010, circumstances arose that really drove home the point that a federal standard for what could and could not be funded under the home and community-based services waiver emerged. In Missouri, the State of Missouri, decided that they were going to close an institution called the Nevada Habilitation Center and take the residents of that institution and place them in a series of large group homes on the grounds of that institution with the same staff with the same location around which they wanted to put a fence and refer to it as a “gated community.” The disability rights advocacy organizations, including many who are represented on this Webinar wrote to CMS and urged them to deny Missouri permission to take that step. And CMS eventually did so. But there was a recognition that these types of gated community proposals, the establishment of large congregate residential settings that providers were attempting to fund through home and community-based services funding were popping up across the country. So that added another element into the conversation on what would need to feature in this role on what was and what was not home and community-based service provision. CMS went through two notices of proposed rulemaking, one in April and�– one in April�2011 and one in April�2012 and issued a final rule in January�2014. You’re going to be hearing from speakers on the substance of the rule and the work that is being done by a wide variety of stakeholders in the developmental disability community on the rule. I want to speak briefly to how the self-advocacy movement, how people with developmental disabilities have been approaching the issue of home and community-based service provision over the course of that five-year period when CMS was preparing to issue this regulation. In 2010, the Autistic Self Advocacy Network, the National Youth Leadership Network, Self-advocates Becoming Empowered convened a summit called “Keeping the Promise” to identify self-advocate perspectives on what was and what was not home and community-based services. We brought together self-advocate leaders from across the country, conducted a survey with self-advocates with a wide variety of different experiences and residential day and employment services and articulated that we felt that the definition of “community” needed to incorporate definitions around physical size and structure, that large congregate settings could not be community-based but that the definition of “community” needed to be broader than that. That it also needed to be multidimensional and speak to the kinds of rules and restrictions or personnel freedoms and access to support necessary in order to allow people to be truly integrated into the community. And as you’re going to hear, that really is a common theme within CMS’ final rule. The regulation was issued on January� 16th, 2014. It applies to all HCBS funding entities. And now to tell you about the substance of this regulation, I would like to introduce to you Alison Barkoff, director of advocacy for the Bazelon Center for Mental Health Law. Alison, take it away. Thanks, Ari. I’m going to spend a little bit of time today talking about the real opportunities that the HCBS settings regulations bring, and I’m going to talk about how to align that with some of the other activities that states and advocates have been involved in relating to community integration and Olmstead compliance efforts. I just joined the Bazelon Center as director of advocacy after four years in the federal government where I was fortunate enough to be working on Olmstead enforcement for the Department of Justice as well as spending the last year of my time working with CMS on these HCBS regulations. So I’m going to spend a little bit of time talking about how those two pieces fit together with some common themes. Next slide, Ari. Next slide should be showing. Thanks. Just to start off with some common ground about what I think probably all of us who are involved in this field are trying to achieve, you know, what is our vision for people with disabilities? And certainly as I articulated in my advocacy work, it’s the basic premise of trying to support people with disabilities to have lives like people without disabilities. And so that means opportunities for real integration, people to have real choice and independence in all aspects of their life. And we really are talking about not just where people live but how they spend their days and how do we make sure that people are really a part of the fabric of their community. Obviously, the quality of services is incredibly person and we need to have services that is meet people’s needs and what goals they’ve set for themselves through real person-centered planning. So as I’m going to talk about today both the HCBS rule and Olmstead are really are some incredible tools to work towards this vision. Next slide. So I’m going to start talking about the HCBS settings rule and just to emphasize how the rule and Olmstead really kind of align. I just want to touch on a couple of places where CMS articulated the goal and purpose of the rule. You know, one reason for the settings regulations is to ensure that people who get services through HCBS programs have full access to the benefits of community living and CMS articulated that the settings rule is an opportunity to further expand meaningful community integration and supporting the goals of Olmstead, and they see the rule as a way for states to further their obligations in complying with Olmstead and the requirements of the ADA. Next slide. And as Ari mentioned, you know, this rule went through a series of ANPRNs and MPRNs and it moved very much from what is not community to focusing on really what are the qualities of people’s experiences in having a real community experience. So unlike other contexts in Medicaid regulations that really focus on the name or the type of service or setting, this really is looking at how people experience community in a multidimensional way. And as Ari mentioned, it applies across the HCBS authorities. That’s 1915(c) waivers, 1915(i) HCBS state plan services which is a pretty new authority and one that new implementing regs just came out and the new Community First Choice option. Next. So what did CMS say kind of the positive characteristics of home and community-based settings are? Again, they focus on the quality of individuals’ experiences. And the requirements for settings include that, first, it is integrated in and supports access to the greater community. Secondly, that it provides opportunities to seek employment and work in competitive integrated settings. And I think that point is going to be really important when we talk later about day service settings. Opportunities to engage in life and control your own personal services. Third, that people are able to choose among settings options. Think one thing that’s incredibly key and advocates really need to focus on including that people are given an opportunity for non-disability-specific settings. So, again, when we talk about choice, the context is people need to be given an opportunity to be in settings when they are not with people with disabilities. Next slide. Again, ensuring people receive services in the community and have the same degree of access and people who are not receiving HCBS services. Focusing on people’s experience in terms of having rights of privacy, dignity, freedom from coercion and restraint. In terms of the goals I talked about and the vision for our system, settings need to optimize individual initiative, autonomy and independence in making life choices. And, finally, again going back to choice, people need to be given a choice regarding their services and supports and who provides them. Next slide. So as Ari mentioned, the rule does make a distinction between provider-owned residential settings and non–provider-owned residential settings. And so there’s some additional requirements for residential settings that are owned by a provider. That is where the housing and services are connected. And I will just quickly go through those. But in these settings, there has to be a lease or a lease-like legally enforceable agreement. People have to have privacy in their units and lockable doors. People must have a choice of roommates and the ability to decorate their own units, people must be able to control their schedules including access to food at any time, have a right to visitors and the settings must
be physically accessible. Another issue that CMS really struggled with and got lots of comments about is how do you deal with situations where there might be some need based on a person’s individual circumstances to have, for example, restrictions on access to food or other types of requirements. And CMS set a pretty high bar in order to require any modification of these settings. And it has to be supported by a specific assessed need of that actual individual. And it has to be justified in the person-centered plan. Alternative strategies have to have been attempted and exhausted and there must be periodic reviews. Next slide. So in addition to saying what is community, in part, driving from the experience of Nevada in Missouri, the situation that Ari spoke about, CMS said there are some settings that because of kind of�– enough concerns that they could be segregating to people, we’re going to be presume that these kinds of settings cannot be included in HCBS programs. And the only they can be included is if the state itself through a heightened scrutiny process presents evidence, actual evidence, that the setting does, in fact, meet all of the HCBS characteristics I went through and does not have institutional qualities. And those couple settings are facilities that provide inpatient institutional services, settings on the grounds of or adjacent to a public institution�– that’s like the Nevada situation�– and this broad category that is called settings that have the effect of isolating HCBS recipients from the broader community. And I think there is where there’s a lot of room for advocacy. Next slide. So what are settings that isolate? CMS since the rule has come out put out additional subregulatory guidance on a number of different points and they do have guidance on what they mean by settings that isolate. It includes a non-exhaustive list of characteristics of settings that isolate. This particular part of the guidance applies to both residential and non-residential services. And so these settings include settings designed specifically for people with disabilities or even settings that are designed for specific disabilities. So ID/DD settings, for example, settings that are comprised primarily of people with disabilities and staff providing services, settings where people with disabilities are provided multiple types of services on the same site, settings where people with disabilities have limited interaction with the broader community and settings that use restrictive interventions. Next slide. And in the context of residential settings, they did give a couple of specific examples and described what it was about these settings that made them isolating. So they talked about disability-specific farms. Again, that those are places where primarily people with disabilities they spend their time there, they work on the farm. They receive services on the farm. Any time that there’s any, quote-unquote, community, it is by coming in to the community. Outside world comes in, not very often people going out. They are isolated. Gated disability communities, many have similar characteristics of only people with disabilities, multiple services there and people spend most of their time on that particular campus. Residential schools. And then they talked about congregate, disability-specific settings that are co-located and operationally related and gave an example of a turnaround on a street that may have multiple group homes that are all together where they’re run by the same people. They’re staffed. Activities are planned together. Again, these are some examples. They did say they would be providing further examples of non-residential settings that isolate, but they made clear that the general characteristics on the last slide apply and so people really need to be focusing on that. Next slide. So I want to briefly talk about transition plans. I think for those of us who have been involved in system change work, I think we all understand these kinds of things if they’re meant to be meaningful and really if there is an expectation that our existing systems don’t completely meet these rules, which certainly is my experience, then states need to be given time to come up with a concrete plan of addressing settings that don’t meet these requirements and either bringing those settings into compliance or transitioning people who are in those settings into settings that do meet those requirements. So the CMS regulations allow states to come up with transition plans, and there’s different timing. All plans have to be submitted by a year from the effective date, which was March of 2014. And for some states, that time period for submitting transition plans may happen earlier because of state submits renewals or amendments on existing waivers, then it tees off the process for statewide transition plans. And, again, the thought is depending on the circumstances, states may need as long as five years is the time frame that’s laid out in the preamble to the rule to bring states�– their state systems into compliance. And CMS, I’m not going to go into a lot of detail on this, has been issuing some subregulatory guidance about transition plans, some exploratory questions and tool kits to help guide advocates as well as states in putting together those plans. Next slide. I think an important piece, an incredibly important piece, that I know both from an advocacy standpoint as well as others from within the government that’s incredibly important, there is obviously some incentive for states in their transition plan to be talking about how most of their system may already be meeting this, but we need to have public input to make sure that CMS and states get the entire truthful picture of what’s happening. So states have to take public notice. The full plan must be available to the public. And the states have to substantively respond to the plan. This is a critical opportunity for advocacy. Next slide. So I just want to touch on a point or two because I know others are going to be talking about this. But it is incredibly important for you to engage your state now and try to push the key stakeholders who are involved in the transition planning process and not just seeking public input after the plan is complete. Self-assessments and paper reviews should not be enough, and it is incredibly important for you to push to get information from consumers, family members and advocates who are familiar with the settings and that your state does some onsite visits to verify information and a work plan is not a final transition plan. So I just want to�– Ari, if you could go to the next slide, I want to just really quickly go through how Olmstead is aligned and can be aligned with the HCBS regs. Next slide. So as many of you know, Title II of the ADA prohibits discrimination by public entities and requires states and other public entities to provide services in the most integrated settings which is defined as the ability of people without disabilities to interact with people with disabilities. Next slide. And so the Supreme Court’s decision, which we all have been working towards implementing, held that it violates the ADA to unjustifiably segregate people with disabilities and that states must provide community-based services when services are appropriate, people don’t oppose community-based treatment, and when community-based services can be reasonably accommodated when you look at the entire disability system. I just want to highlight Olmstead applies to all facilities, services and programs that are funded or designed by the state, not just those directly operated and that Olmstead does apply not only to people in but those at risk of entering segregated settings and programs. Next slide. So what I want to highlight here is we have very developed case law as well as guidance from the Department of Justice about what integrated settings are. And I just want to highlight it because there are some�– a lot of similarities, and it was purposefully done between the ADA definition and the HCBS settings requirement. So an integrated setting is one that provides people with disabilities the opportunity to live, work and receive services in the greater community. Those are settings located in the mainstream society, offer access to community activities, give people choice and daily life activities and provide them with opportunities to interact with people without disabilities. These are many of the same types of HCBS settings characteristics and some examples are scattered sites supportive housing or supported employment in a mainstream job. Next slide. And in contrast, what is a segregated setting? Again, these qualities developed through case law and DOJ guidance. They are very similar to the characteristics of settings that isolate. And, again, these are settings that have institutional qualities like people primarily are exclusively with people with disabilities in congregate settings, regimentation in daily activities, lack of privacy and ability to freely engage in community activities, and settings that provide for daytime activities primarily with other people with disabilities. And, again, some examples are ICFs, nursing homes, adult care homes, sheltered workshops and segregated daycare settings. So just to touch on�– because I think this is incredibly important as you advocate in your state�– there has been successful challenges under the ADA and Olmstead to a number of residential settings. And those hopefully are the very same ones that you’ll be able to push in your states’ HCBS transition plan. So obviously ICFs, psychiatric hospitals, nursing homes, adult homes, board and care homes. And, again, the types of remedies in ADA settlement agreements I think are the types of settings that you should look to as examples of integrated settings. So that’s integrated housing, like scattered site supportive housing and supported apartments. Next slide? On the non-residential side, there has been successful ADA litigation around sheltered workshops and segregated day programs. And, again, as you are looking at your state transition plan, I think those are places where you should spend a lot of energy really thinking about are these settings that isolate and should not be included under HCBS programs. And, again, kind of on the integrated side, the expansion of individual integrated, supported employment and integrated day services has been the remedy. Next slide. And so I think just the last point I want to make is it is incredibly important that you try to align states’ transition plan process with your Olmstead goals. And so it is incredibly important that you see this as an opportunity to move towards real integration and further Olmstead compliance. But people need to understand the real risk that if CMS approves the transition plans, the very settings advocates or the Department of Justice has been challenging under Olmstead, this really could undermine Olmstead efforts in your own state and nationally, even though certainly the case law and DOJ guidance is clear that the standards and the requirements under ADA and Medicaid are independent. But because they have so many of the same concepts, I think it is really important for you to think in a big picture about how do you use HCBS and Olmstead and really think about aligning those goals. And with that, I will turn it back over to Ari to bring on the next speaker. Thank you. I noticed we’re getting a number of questions. We’re going to have hopefully about half an hour for questions at the end. So don’t go away. And we are keeping track of all of the questions that you type into the questions window. So please feel free to continue doing that. And we will take as many of them as we can once we reach the Q&A portion. With that, it’s my pleasure to introduce my colleague Samantha Crane, director of public policy with the Autistic Self Advocacy Network. Sam? Hello, everyone. I’m Samantha Crane. And I’m going to be, first of all, thank Alison very much for her detailed overview of both the regulation and the sort of theory and activism that went into passing this regulation. I want to move on and talk a little bit more about what advocates can be focusing on in the public comment periods and in the process of reviewing these transition plans. This ties in with a tool kit that we’ve recently published on the home and community-based services rule. Our tool kit includes guides for advocates on how to move the ball forward and try and make sure that the HCBS regulations are implemented in their state in a way that really gives the fullest effect to the regulations. Back to the first slide. Okay. So�– I’m sorry. I’m trying to figure out the slides. So our major concerns are as Alison pointed out, many of the states have only submitted sort of preliminary plans to plan which don’t include detailed information about what will be considered home and community-based services. In addition many of these plans to plan are really hard for lay people and especially for people with cognitive or developmental disabilities that affect their reading comprehension. It is very difficult to process. And many of the transition plans have focused almost exclusively on residential services in part because the states are awaiting further guidance from CMS on how to apply the new rule to non-residential settings. As Alison pointed out, CMS has pretty much just said, look, the rule applies to both residential and non-residential settings. So it shouldn’t be the case that states would not know how to apply it in a non-residential context. But we are seeing some states say that, that they don’t want to plan their non-residential transition services plan until they get to the non-residential settings guidance. Can we go back a slide? The states�– in the case of residential settings, one of our major concerns is that states will focus almost too much on the specific detail that Alison described of the regulation as it applies to provider-owned residential settings. And those details�– those sort of detailed extra requirements are meant to be on top of substantive broader requirements like integration. But there’s a serious concern that states will see these as interchangeable. And if you meet the requirements, for example, residential choice, privacy and autonomy, at least in the case of a provider’s on the books compliance and the provider’s description of their own policies that that’s going to be enough. But if you have a group home that has a policy to allow people to have visitors or that allows people to lock their doors, it’s still not going to be in compliance with the new regulation if it’s physically isolated, if it is understaffed and can’t actually accommodate flexibility and choice in resident’s schedules or if residents are nominally given choices about what to eat or what to do during the day but it is from a limited menu. These are things that are very difficult to avoid in congregate settings and one reason why we would want states to be moving away from group homes, away from just trying to get their group homes to comply and instead focusing more on expanding scattered site non-disability-specific options. We want advocates to push to make sure that states are not�– are really conducting a more broad, holistic reevaluation of their residential services. Next slide. In terms of employment services, we are seeing from some states a focus on this idea of maintaining a continuum of settings without addressing the sort of subregulatory guidance substantive requirements in the regulation that these settings be actually integrated to provide actual opportunities for competitive integrated employment. We saw in the state of Wisconsin, which we will go into in more detail, the state claimed that it should be able to use funding for sheltered workshops. Can someone put their speaker on mute? So using state claims that they should be allowed to provide services and sheltered workshops and have those be funded through HCBS funding simply because, well, we have a range of services and supported employment services are among those. But the regulation itself specifically says that all HCBS-funded services themselves have to meet basic integration requirements and provide opportunities for competitive integrated employment. It is not enough that just some of your HCBS services meet 8b these requirements. All of them have to. And we need to make sure that advocates know that and are armed with this information when approaching their states. Next slide. Similarly with non-employment day services. We want to make sure that states don’t take the position that it’s enough for a day services provider to take people on group excursions into the community out of�– especially when the choices are limited to a certain menu of options each day. When you have an identifiable group of, say, five people with developmental disabilities all going to the museum at one time and they’re mainly interacting with a staff member, that’s not the same degree of access to the community that people without developmental disabilities or without other disabilities would have. And we need to make sure that people get their states to move instead towards self-directed, non-group-based and non–center-based day services. Next slide. We know that size matters. The research shows that when you have a smaller setting and much of this research is on residential settings, but it is also true in day settings. When there is the more people you have in the setting, the less choice and control people have and this is across every level of intellectual disability. The research clearly shows the scattered site housing is preferable to congregate housing or even clustered housing. When you cluster people with complex support needs, you actually reduce the ability to provide services with the level of choice and control. For example, if you have a group home that serves maybe six people and you have one staff member that’s supposed to be helping all six of these people go out into the community and do their errands during the day, then you’re just not going to be able to do that because there will be people who want to go out at the same time, there will be people who want to go to different places at the same time or if someone wants a meal at one time and they want their individual meal when somebody else is using the kitchen, it becomes very difficult. Similarly in congregate settings, we have seen only a 5% graduation rate from congregate employment settings to competitive employment. Congregate employment services are much more effective. Next slide. And there are other thing, not just about size that are going to matter. So a provider-owned residential setting, even if the person is in their own apartment, the fact that the apartment is owned by the provider is going to change the dynamic and the ability of the person to exercise maximum control. Now, the CMS regulations allow�– they are clearly contemplating someone might be in a provider-owned setting but they recognize when that is the case, there is going to be a need for added protections. You want to make sure that people have a choice of roommates, access to phone and Internet, access to visitors, choice of�– where and when they are going to engage in day activities and what activities to do, privacy and much more. These are the things that we’re seeing in the regulations and there are things that we need advocates to be really paying attention to when they are evaluating settings that exist in their state and providing feedback. Next slide. So we need to make sure that we use�– as Alison said, there are a lot of different sources of law that advocates can use. There’s both Olmstead and regulations and just sort of substantive policy issues like cost effectiveness and effectiveness research and sort of more empirical research that people can bring to bear. So people should use all three of these or at least consider using all three of these tools when advocating for changes in provider models. Next slide. So how�– how are people going to know how to participate in this process? So as Alison pointed out, states have to make these transition plans available for public comment. The dates are all different for every state. So we recommend that people use HCBSadvocacy.org to find the transition plans in their state. Find out when the deadlines for those plans are. Find out when the comment periods are. And find out which state administrators to send their comments to. This can be kind of hard to navigate for lay people, so we included sort of a detailed step-by-step instructions in the tool kit for advocates. Again, that’s available at autisticadvocacy.org/hcbs. Next slide. Here’s an example of a state response that you can sort of use as a model for what you might see when you’re looking at your�– when you’re looking at your state transition plan. Tennessee took the new regulations as sort of an opportunity to introduce a new model that they had been working on. They submitted a concept paper for the model on May�30, 2014. And according to their concept paper, they’re going to introduce a new program called Employment and Community First CHOICES. That’s both sort of a housing-first and employment-first model, and it’s geared toward promoting both competitive integrated employment and independent living at the first and preferred option for all people with intellectual and developmental disabilities. It is going to be operated as a managed long-term services and supports program. Next slide. Consumers will be able to choose from three models of service delivery which ranges from consumer direction, where the person manages their own support budget to a health-home agency with choice where a person sort of chooses a provider that will direct services. And then there’s also the basic management LTSS package. Next slide. It’s going to include preparation and transition services to people under age 21. It is going to provide employment supports even if they are not at the nursing facility level of care. And it is going to first target all new enrollment into the HCBS program, but then it’s going to be expanded to all HCBS recipients. Next slide. Wisconsin, on the other hand, reacted a little bit differently. They haven’t yet submitted this as part of their transition plan, but they sent a letter to CMS asking permission to allow HCBS funding of sheltered workshop and facility-based day hab. They have under the assumption that this was part of a range of options and that people should be able to choose non-integrated settings and still have them funded by HCBS. It was pretty clearly not within the text of the regulation, and it earned significant opposition from disability rights organizations. But CMS has not yet responded to the letter. Next slide. So when you see as these two responses illustrate, there might be very differing contexts in which you’ll be submitting�– or advocate be will be submitting to comments to CMS and to states on transition plans. There might be a very well-fleshed out plan to completely overhaul your services system or there might be a sort of an attempt to lawyer around with it and try and come up with some justification for continuing to do the same old thing and say that it is complying with the new regulations. So people really need to be on top of it, and they need to be submitting very detailed responses to states, especially to ones that seem to be planning to mostly keep the same providers and same settings. So, for example, you want to make sure that the states are interviewing service recipients and not just facilities. This is something that Alison pointed out. It’s very crucial that you don’t have people simply self-reporting that they comply with the rule. You want to make sure that advocates are talking about specific settings, especially ones that it looks like might be trying to continue operating under the new regulation or to continue operating with minimal changes. So if there’s a group services provider, a day habilitation provider, a group home provider in your area that you’re familiar with, don’t hesitate to sort of name it and talk about, you know, which provider seems to be doing it right, which ones are doing it wrong, which ones seem to have a disconnect between their brochure descriptions as you might call them and what they’re actually doing and the actual experiences of service recipients. And we want it make sure that all stakeholder groups are going to be included in this discussion. We know that providers are going to be well-represented in the process but self-advocates and families, unless there’s significant outreach and significant education, their voices might not be heard as much. Next slide. Alison kind of already explained the interaction between HCBS and Olmstead. But it is important to know, as she said, Olmstead applies to all state-funded services, not just home and community-based services. So a lot of the time when you bring up Olmstead, you can kind of get that to apply to a wider range of service options and don’t hesitate to bring it up in the context of HCBS because as she noted, the final rule is explicitly designed to sort of align with the principles of Olmstead. Next slide. So the new CMS rules, as she said, the terms of the Olmstead settlements are going to give very concrete examples of what is compliant and what is not compliant. Next slide. And there are going to be cases in which you can use Olmstead to sort of fill in gaps left by the final rule. So, for example, let’s say that the state provides compliance services to a small population of people on a HCBS waiver and there’s a long waiting list, you can use Olmstead to argue that because if the individuals on the waiting list is at risk of institutionalization or other kinds of segregating the state is violating Olmstead and they should actually be expanding the HCBS program, expanding people’s access. Next slide. Here are some examples. I’m not going to go into them too much because Alison gave a pretty good overview. But if you would like to look up Olmstead litigation in your state, there’s one from New�York called United�States versus O’Toole which is a residential services case. United�States versus Virginia, which covers residential services and day services. And United�States versus North Carolina, also another residential case. All of these settlements required states to develop scattered-site supportive housing. Next slide. On the non-residential services side, you can look to the Rhode�Island case which was just settled which requires a phaseout of sheltered workshops. United�States versus Virginia which, as I said, requires states also to provide supported employment to people with ID/DD. And lane versus Kitzhaber which is a pending case but the Department of Justice has already issued a findings letter saying that segregated employment services violate the ADA. So if you are trying to get the state to stop funding segregated services as part of their HCBS program, pointing out that it also violates Olmstead is going to be very helpful. I think I am now at the end of my slides. Is that right? Yes, indeed. Thank you so much, Sam. And it is now my pleasure to hand things over to the next speaker, Esme Grant from the National Association of Councils on Developmental Disabilities. Thanks so much, Ari. This is Esme Grant. I’m the director for public policy on National Association of Councils on Developmental Disabilities. In order to allow for questions, I will keep my comments very brief today. We will be talking a lot more during the next four Webinars of this series. This is really just meant to be an introduction Webinar of this five-part series. So I really just want to do a basic introduction of, first of all, who the DD network is and then, secondly, our work on the HCBS role to familiarize yourself a little bit more with how we’ve been involved and some of the things we’ve done since the rule came out. My partners from the other organizations will be speaking a little bit as to what they’re doing. I want to just give a basic overview of who we are all are. I mentioned the DD network. That’s comprised of three different arms of the DD Act, and that’s the Developmental Disabilities Assistance and Bill of Rights Act. It is actually a piece of legislation that’s about 50�years old. It just celebrated its 50th anniversary last year and initially was formed in order to take a deeper look into how people were being treated and the services that were being offered in institution. It then developed into a legislation that allowed people to be further integrated into the community and be part of greater society. So the three arms, as I referred to them, are the DD councils, the developmental disabilities councils which is like the community arm. It is made up of experts in the field and also family members and people with disabilities themselves who can weigh in on what’s going on in the local community around developmental disability issues. And then there is the UCEDDs, University centers for excellence in developmental disabilities, who focus on the research part of this partnership and then finally the protection & advocacies which are really the watchdog unit of this to make sure that the laws that we in order to protect people with developmental disabilities are being complied with. If not, they’re making sure that they’re pointing that out and doing the right oversight. Moving onto the next slide, I want to talk a little bit more about the DD councils, then allow my colleagues at the national associations to talk a little bit more about what they do. Each of these arms have a national association. I represent the national association for the DD councils. And there is a DD Council in every state and territory and that’s true for the UCEDDs as well as the P&As. They have a full-time staff and they have a council made up of governor-appointed citizens who volunteer to serve, the majority of whom are family members or people with developmental disabilities themselves which is a very important component of what the councils are and do. And then I just put our mission statement on this slide to just give you an overarching idea of what NACDD does. We serve as the national voice of these state and territorial councils for developmental disabilities and we serve them in implementing the developmental disabilities act, promoting the interest and right of people with developmental disabilities and their families. One the ways we do this is through this HCBS rule. Ari, if you could actually move forward to slide 57 where it talks about the DD network rule on HCBS. What we did is we partnered with the P&As through the National Disability Rights Network and the UCEDDs through the Association of University Centers on Disabilities, we partnered with all of the national organizations over the DD Act’s program to really work on the HCBS rule. Initially, this started with our concern with segregated housing. The DD Act is focused on integration, so we wanted to look more towards integration and really the power of this rule in order to achieve that. Actually, back in December�2010 when there is advanced notice of proposed rulemaking, we submitted a lengthy formal comment to CMS from our combined national association. I’m not going to dive deep into it because we are running a little bit short on time. But we wanted to make sure that when CMS came out with this rule, that they were aligning the definitions of inclusion and integration with the DD Act and that they were also meeting expectations of the ADA and the Olmstead decision which Alison and Samantha reviewed. We also wanted it make sure that they were recognizing the research demonstrating the benefit of community living. This really is credited to a lot of the UCEDDs who are coming out with a lot of this valuable research. And then, finally, we wanted to make recommendations for defining home and community-based living arrangements for individuals with developmental disabilities. We actually went quite thorough into those recommendations describing what we believed, for instance, making choices about your daily lives and what it did not mean, what it meant to fully participate in the community and what it did not mean and so on and so forth. And then in May, after the rule had emerged in January, in May�we created HCBSadvocacy.org, a wonderful site with tracking tools and information that my colleagues from AUCD will describe a little bit further. I wanted to add on that in June after we started to see implementation of the rule take place, we saw a few issues and wanted to make sure we were on top of them. AUCD, NDRN issued a letter making a couple of points including CMS should send a strong message to states on stakeholder engagement. Input is a requirement of this new rule, and we wanted to make sure that was being conveyed very seriously. We also asked that the states get more guidance that there wasn’t enough guidance for states to fully implement the rule so we really urge them to release more. We also wanted the federal agencies to speak with one voice so that we could all have reliable information coming from multiple sources. And furthermore, to�– for CMS to ensure transparency as the transition plan that were discussed by Samantha and Alison are emerging, we want to make sure they’re easily accessible to folks, that you can find them and you don’t have to dig for them. We really wanted that message coming from CMS so people could have all the access that they need. I will wrap it up there. We will be talking more on the next Webinar. So I will pass it off to my colleague Elizabeth Priaulx from the National Disability Rights Network to talk a little bit about what the P&As are doing. Yes, thank you, Esme. This is Elizabeth Priaulx. I’m with the National Disability Rights Network. I will be able to talk more about what we do in the fifth and final Webinar. But right now I want to talk specifically about the P&As and why all of my colleagues here have mentioned when they mentioned stakeholder input, self-advocacy input, family member input, each of them have also say “and P&A input.” So I just want to provide a little bit of understanding of what that is. Protection & advocacy agencies are often confused with adult protective services or other kinds of state certifying agencies. And that is not what we’re talking about. Protection & advocacy agencies are actually federally mandated and federally funded. There’s one in every state. And if you will switch to the next slide, please�– okay. There is one in every state and territory just like the DD councils and the University Centers on Excellence. But what’s nice about the protection & advocacy systems is they are cross-disability. And they have unique and incredible access authority to any setting where a person with a disability receives services and that would include not just ICF or state hospitals but also jails, prisons, homeless shelters, sheltered workshops, schools, any place where a person with a disability, any disability, could receive services. The protection & advocacy programs have the authority to go in and provide legal advocacy monitoring and to investigate for potential abuse and neglect. We also have the authority to do the full range of legal advocacy options, so that includes basic information and referral about laws you’ve just heard about, the ADA integration mandate and enforcement of the Olmstead decision. And it also�– I did want to say just we partner quite well with the DOJ. Most of the cases that were mentioned earlier by Samantha actually began as P&A cases, and the DOJ intervened and then did investigations. And so it is a great cooperative arrangement there on Olmstead enforcement. But for these purposes, I want to mention investigations of abuse and neglect and facilities. That is a standing priority for every protection and advocacy program. And other�– and we also have the authority to investigate abuse and neglect in community-based settings and settings like sheltered workshops. And we would consider failure to comply with the new HCBS rules as a form of neglect and definitely an area where we needed to provide legal advocacy and education so that individuals living in these settings knew that they, first of all, may have a right to a more integrated appropriate setting and then also that these settings must comply with the new rules. So if you go to the next slide�– actually, I have already gone into that. So you can go into the next slide, if there is one. Okay. So I wanted to go over some of the community-related monitoring that we can accomplish. We work on discharge planning and transition monitoring. And that’s a very important element of these new regs. We work on alternatives to guardianship and promoting supportive decision-making and monitoring representative payees. And I put that in there to show that we are already going into very small settings where an individual might just have a representative payee. And while we’re in there, we are able to familiarize ourselves with the rules of these settings so that we can look at things like Samantha said where people might be given individualized service plans but then you might notice a policy on the door of the refrigerator which says, you know, no access to this type of food because somebody in the setting has PICA. And that would be the kind of thing that a protection & advocacy program would know to have a red flag. You know, are these�– are there rules and policies in the setting which actually might contravene another person’s individualized service plan and then other issues. When we go in and we only see one service provider but six individuals, just like Samantha said, does that really allow for choice as written into an individual service plan? One of the reasons why it’s important to have a protection & advocacy agency as opposed to just the state certifiers is because we can become familiar with what it means to have full autonomy and person-centered services. So I’m going to stop now. But I just wanted to encourage folks to make sure you’re familiar with the protection & advocacy agency in your state. It will most likely be called a disability rights and then the name of your state or disability legal center or something like that. Call them up. Ask them what they’re doing in regards to providing comments and advocacy related to the HCBS rule and offer to help them in any way if you are familiar with settings which are technically receiving HCBS services but may not be complying with the rule. If you are developing a coalition, please invite your protection & advocacy agency to join. And, remember, that protection & advocacy agencies have unique authority to monitor settings long after the state transition plan is developed. So if you are talking with your state about ensuring long-term monitoring, you might want to contact your P&A and ask them for advice on what types of long-term monitoring could be available. So thank you for the chance to describe our program. Rachel Patterson, you have the final word. I will turn it over to Rachel. Sorry. I’m Rachel Patterson. I am from AUCD which is the Association of University Centers on Disabilities. Our members are the third part of that DD network that Elizabeth was talking about, the experts in DD. You can see our mission here, they primarily engage in research, education and service. And that means a lot of things. From the research standpoint, they do the type of research that people have improved outcomes in smaller educational settings. They also educate students and community members through training. They educate graduate students who are going on to maybe some clinical professions or into other advocacy-type organization, supporting people with disabilities. They also conduct community trainings and technical assistance to do things like help people understand the room or help people understand their services, help them through an IEP which is an education process. They serve a lot of different functions to support people with disabilities and their families through that research, education and service. On the next slide. It shows just some of our other members which just means to show you that they exist in every state and territory. Here we’re talking about the University Centers for Excellence in developmental disabilities. Those are often co-located with two other programs. One is the leadership education in neurodevelopmental and related disability which is primarily a graduate training program, although they are expanding to include many other people that they are educating. It is gaining leadership both in clinical and non-clinical professions in the needs of people with developmental disabilities and their families. And the intellectual and developmental disabilities research centers, which are the biobehavioral hard research science centers. These are the kind of places where they use basic research of what you think of as transition scientific research to solve problems like: Why do people with down’s syndrome get Alzheimer’s so early? Those are the kinds of things they investigate from scientific data. We are here primarily talking about the University Centers for Excellence in DD however. You can go on to slide�– two slides ahead. Yeah. There we go. Back one. Last, we are going to talk about HCBS advocacy. And I hope this is something people have a moment to explore. These are just screen shots of our Web site. And as Esme said, when the rule came out, we started really thinking about how we could get involved beyond commenting. And a lot of our members were saying we really want one place where we can go and just figure out what’s going on, get information from the state, get information from advocates, get information from the federal government, know what’s happening. So we created a Web site with a page for every state. You can click on the state in this map or select the state from a list. And it will tell you a couple of things. It posts dates and deadlines for when states have posted transition plans, when comments are due, when they’re holding public meetings, official documents from the state that they have put out about the HCBS rule; resources from state-based advocacy organizations and other organizations that may be interesting; and also any local news about the rule and its implementation. In the news section, we include news articles and opinion pieces. And we have included articles that are supportive and not supportive of the rule because the goal is to give people a snapshot of what’s happening in their state so that they can have one place to go to be informed. Excellent. We also post on every page the dates and deadlines. Whenever a state has a comment period open, it’s posted on the Web site. We’ve also posted some information about when states are expected to be submitting waiver applications. If you remember from earlier in the PowerPoint, they talked about how�– when a state starts to submit a waiver, that triggers their need to write a transition plan. This is designed to help state advocates get some kind of a better idea of where their state is in the process. And, finally, on the next slide, we also have both national resources and federal resources. And those are different, and I’ll tell you why. The national resources are from advocacy organizations, things like the ASAN tool kit is now posted on that page, tools and information and resources from other advocates about how to best get involved, what you can do to help make this rule and its implementation even better. On the next page�– sorry, back one slide. To learn about the new rules is our federal resources. And this is only for information directly from the federal government. And we separated those two things for a reason, because, you know, if you’re reading something from CMS, that’s something you can take to your state and say CMS says this. This has its logo on it, and this is what the rule really says. So we wanted to make sure it clear that when CMS says something, it is pretty serious and it is something that states need to pay attention to. And, finally, on the next slide, we’ve also created an email box. The point of this is that HCBS advocacy is something that we’re pulling together and we’re putting all of our effort into it. But there’s a lot of states out there. So what we’re hoping is that advocates in states can let us know when transition plans are posted, if they hear about it, when the state does something interesting, when there’s news reported on your local news station. We will try to help you stay informed and hopefully you will help us inform everyone else. It is kind of a community effort. We have built it this “if you build it, they will come.” And so far it is working out. We’ve got really, really good input into the email box of folks letting us know what’s going on so we can then post it and let other state advocates see what’s happening in your state. We are moving right along to questions. That’s the end of my section. Thank you. Thank you, Rachel. And thank you to all of our esteemed speakers for sharing their expertise with us. I would like to go straight to questions. The first question we are going to be taking is directed to Alison. The question states: It appears that CMS has accepted the state transition plans from Iowa and Georgia. But these plans seem to be basically plans to plan. Are these sufficient transition plans? And is CMS ultimately going to be expecting more? What will they be expecting? And how will that be enforced? Again, Rachel is probably the person that can be the person to talk about specifically what states has done. I can touch on the plans to plan. What CMS has said in numerous public places and in some of its tool kits is that any time there is a substantive change in a plan that there will have to be public comment on that. So right now for states that were in the first wave coming in on the early side before there’s been lots of guidance out, many of these plans do contain kind of benchmarks and how we’re going to go about assessing. Absolutely states will need to put together a plan that buckets settings into the ones that do meet, the ones that don’t meet, the ones that are in the presumptively non-HCBS if they want to put some through the heightened scrutiny process. All of that will need to go through public comment again. So, again, Georgia and Iowa, they will have to go back. CMS will require a full substantive plan, and I’m not sure we’ve heard from CMS definitively around time frames. But many of those work plans do contain time frames and they should include kind of what the next steps in the process is. I will also jump in and add that Iowa has submitted a plan for, from what I know�– Iowa has submitted a plan for one of its waivers but that is not a statewide transition plan. They will need to submit more plans for additional waivers, and depending on what CMS says, may need to submit even more. Excellent. The same questioner was also asking about where he could find more information about the research that Samantha mentioned showing the drawbacks to congregate settings and describing why scattered site housing is preferable. Sam, could you speak to that? Sam? Sorry. I was on mute. I had to unmute myself. That research is in our tool kit. We actually included as part of the tool kit a research brief that really focused on the studies showing that people in more scattered site, smaller housing environments had better choices and better outcomes. And we’d also encourage people to check out the national core indicators data which we also mention in our tool kits. That data allows you to look at outcome measures for specific states that are participating in the NCI program. And those measures allow you to sort of look at outcomes like the degree to which a person chose what to do with their day and disaggregate that by the kinds of settings in which people live. Excellent. And the tool kit that Sam mentioned is available at autisticadvocacy.org/hbcs. And the national core indicators data is available at nationalcoreindicators.org. Let’s take another question here. One of the questioners is asking, is it permissible to allow states to pay room and board costs directly to provider group homes. Payment that is given to providers but not available as a subsidy to individuals essentially incentivizes people being placed in disability-specific group homes rather than scattered site housing. Will this continue to be permitted? I think what they’re getting at, rather than room and board more formally, is incorporating in the group home rate costs associated with maintenance of residential group homes and not making that available via a rental assistance program. Alison, Sam, could either of you speak to that issue? I’m happy to jump in again. As Ari referred to, one can’t use Medicaid to pay for group homes. But we have heard about some states that do give subsidies to congregate living that aren’t available if people were living in their own homes. Those are things that have been�– people are looking closely at challenging under the ADA and under Olmstead and I think those are really viable if the stated has a system that leads to segregation of people. On the other hand, if we’re talking about the HCBS regulations, I’m not sure the regulations themselves say anything about state funding towards housing. And so, again, I think these are tools that have some�– lots of similarities but also have some differences and these HCBS regs really only apply to the Medicaid funding pieces. But someone else can jump in if they have a different view of that. Another thing to keep in mind is that some of these subsidies are going to come from H.U.D. funding. And there are a few H.U.D. funding streams that are statutory and that tend to favor or that are often interpreted to favor congregate settings. But there are a lot of other H.U.D�– sources of H.U.D. funds that H.U.D. has explicitly said can’t be used to support low-income housing projects that are targeted primarily at people with disabilities unless those projects are based on sort of reserving individual scattered units, accessible scattered units for people with disabilities in order to promote integration. So there are some�– even when there are some funds available for�– that seem to favor congregate housing subsidies, there are other sources of funding that are going to really become available when a state shifts toward a scattered site model. We have a question from somebody referencing the issue around choice of roommates, in particular in the provider-owned setting requirements. They ask: Does roommates mean a person actually sharing your bedroom, or could it also mean a person who is living in your home using the same kitchen or shared spaces and so on and such forth? Basically, are they only talking about roommates or also housemates as well? This question has come up and, again, I think in the context of the rule, it certainly is discussed a lot around a person’s individual unit and sharing that space. There’s a whole different place and requirement around people being able to choose whether or not to live alone or with a roommate at all. I do think certainly best practices and even if it’s not just choice of roommate but looking at people having choice in their daily lives and autonomy, being able to choose with whom you live is incredibly important. But I do think that, again, that choice of roommate is in the context of a sharing unit. But I think there are other places in there that certainly have the implications of broader being able to choose your housemates and other people with whom you live. And that certainly is true in the context of having to be able to have a choice to live without people without disabilities, i.e. a non-disability-specific setting. Alison, I was just wanting to add a word or two on that. I think that every person here knows that oftentimes because there isn’t enough community-based services and supports to begin with, the choice to have a roommate are not have a roommate is a false choice. We’ve brought that up to CMS and I’ve been told that, you know, if a state has some options for settings without roommates, that that might be sufficient. So I am not getting the impression that they are interested in expanding this to perhaps the unit even though that may certainly be best practice like you said. I would be interested to hear, Alison, if you disagree with that because the impression I’m getting is we know it might be a false choice, so, you know, we’re just going to be make sure that states have some options. Yeah, I think it is all of our role to make sure that these words have meaning. The words are in the reg itself. Certainly, it is incredibly strong about people being have a choice of roommate is incredibly strong that people must be given a choice of a non-disability-specific setting. In the place where it does talk about people being able to have their own place, it does recognize that may depend on the individual finances of people because as we talked about earlier, Medicaid can’t pay for room and board. I think our role as advocates is to make sure these words have meaning and to push and make sure that these are real options for people. And if they are not, it needs to be pointed out to your state and to CMS. I would agree with that which is one reason I was so upset by what I heard by CMS, and I think it is something we should all try to push for and make sure the rules are actually enforced. One thing we recommended in our tool kit is to make sure that something is a real option, taking into account the individual resources of the service recipients, when the state has an option to live without a roommate or in one’s own place, there should be efforts to make sure that the rent in those places is within the amount that the person can afford given their SSI or other disability benefit allocation so that when we read the phrase “taking into account someone’s personal resources ,” we think that should mean you are actually taking it into account in terms of deciding whether or not you’re even providing a real choice and not simply saying, well, we offered this option but only for people who have more money than SSI gives them so they’d have to be supported by their families. So possibly our final question, depending on how long it takes to answer it, we’re hearing�– this questioner is hearing from many people in their state that a number of settings, specifically gated communities, farmsteads and similar large congregate settings are being planned or in the process of being constructed by family groups. What should they be doing about that with an eye towards building recognition that these settings will not be able to receive Medicaid waiver funding in subsequent years after the full implementation of the rule? I will start off with that response by saying definitely go to HCBSadvocacy.org to track when the public input�– when there is opportunity for public input on your state’s transition plan. We’ve discussed this before within the DD network, that it is really important if you aware of those new construction and new developments that you point them out in your comments and, also, I think you know we’re collecting data on that as well. I know Elizabeth at NDRN would like to receive that information. Definitely share it with us as well. We would encourage you to put that into your comments to the state transition plan so they are aware of these settings. Now, it may be that these developments are not planning to receive HCBS waiver funding and they can’t exist based on other funding and private funding. But I think it is extremely important regardless for those to be pointed out during that stakeholder input. I completely agree with Esme. I would like to add, too, that it is important to monitor those settings long range. While they might be originally funded through charitable donations and not through waiver funds, oftentimes what will happen is the�– because of a dearth of home and community-based services available in a state, a state will begin to allow what used to not be allowed as home and community-based services and begin to consider that home and community-based. So it is important to continually check on how those services and settings are funded. We continue to have a lot of really great questions being asked but unfortunately we are out of time. I encourage the questioners who would like to follow up on these items to check out our tool kit at autisticadvocacy.org/hcbs or take a look at HCBSadvocacy.org. I would also like to encourage all of our audience members and their friends, family members, professional contacts and just plain acquaintances to consider joining us for the rest of our Webinar series. Our next Webinar will be on October�7th. And, once again, it will be from 1:00�to 2:30�p.m. from Eastern Standard Time. Its focus will be on the application of the new HCBS settings rule to housing and residential service provision. This Webinar will be made available online, and you can receive a copy of the PowerPoint slides by emailing [email protected] advocacy.org. The full recording of the Webinar will be made available as soon as it is fully captioned and will be posted on the ASAN YouTube page within the next several weeks. We’d like to thank you all so much for joining us and, once again, thank our esteem the speakers for sharing their expertise. We hope you have a wonderful afternoon and continue the great and important advocacy that you have come here to support. Thank you so much. And please have a good day.

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