Friday, October 6, 2017.

Medicaid Waivers Webinar.

The following transcript was generated by realtime captioning, an accommodation for people who are Deaf and hard of hearing. This lightly edited transcript is not a certified record and cannot be used in proceedings as an official transcript or record.

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AMBER SMOCK: Hello, everyone. This is Amber. I think we have a couple of minutes before the webinar will start. I see that the CART is now in action. Let's go ahead and wait just a couple of minutes before we get started today. Thank you.

AMBER SMOCK: This is Amber Smock speaking. Good afternoon to everyone who has joined the call so far. I see we have about 34, 35 people who have joined us. Today what we're going to do is I'm going to start off by giving a little background on why we are having this webinar today and then I'm going to turn it over to our presenters John Jansa and Carrie Chapman who will give you the scoop on understanding and acting on Medicaid policy.

My name is Amber Smock, and I'm the Director of Advocacy at Access Living. Part of what I do is I coordinate a working group called Disability Power for Community Integration. And that is a working group of lots of different disability advocates across the state and in Washington, D. C. who are dedicated to furthering opportunities for Medicaid home and community based services so that people with disabilities can live as independently as possible in the communities that they wants to live in. But one question that people sometimes have is what is a Medicaid waiver, where does it come from, who writes it, how does it get approved, can they get rejected? Do people with disabilities get any say in these Medicaid waivers?

And I think often I interact with grass roots people with disabilities who know what Medicaid is but aren't quite sure about what the community based services waiver is or how they get their services. The interesting thing is people with disabilities can determine the rule of the waivers. But the question is where do we get the tools to understand that, what sort of information do we need to know? So I'm very happy today that we have two experts on Medicaid policies who can help us understand a little bit more what are some of the key waivers that affect people with disabilities who want to get home and community based services and where do they come from, et cetera. And so right now we have changed our slide and you can see that we have four parts to our webinar. We have the introduction, we will have a summary of the waivers and talk about the waiver process and then we will have questions and answers.

We will hold questions until the end or ask in the chat box or email asmock@accessliving.org. You can use the chat box on the screen if you have questions. I will turn it over to John Jansa from Health and Disability Advocates, and Carrie Chapman from the Legal Council for Health Justice. All of our organizations are based in Chicago but to different degrees. John and Carrie would you like to get us started?

JOHN JANSA: That would be great. Thank you, Amber. This is John Jansa. Carrie will be joining on in a little bit as we move our way through the agenda but my role in this discussion today is to talk about Medicaid waivers in a broad sense to give everyone hopefully a base understanding of the waiver process, how it works, and really what we're hoping to accomplish today and what Amber said is we really want to set the stage so everyone here who is on the call understands that there is a role for advocates to play, and we want to make sure that all advocates across the country get a chance to take advantage of that role and make the change that's needed in our state's Medicaid systems.

So I think what we have to start when we're talking about Medicaid waivers is why is it important to understand this process? Amber did a very good job explaining that she gets questions and certainly I think Carrie and I both get questions from people trying to understand what waivers do and why do they exist. Again, we are talking about Medicaid, so waivers really start at the state level. Medicaid is a state and federal partnership but Medicaid is as a program is run at a state level so the state decides whether a waiver should be written. And I will explain a little bit more about what a waiver is and what it does in a little bit.

A state decides to write a waiver based on a number of different reasons. They may have budget needs or budget constraints that force them to change how they run their Medicaid program. The federal government may tell states you need to start focusing on this aspect or that aspect of Medicaid policy, but very often advocacy at a local, state, or even federal level can drive the creation of waivers. And, in fact, advocates have played a critical role in shaping federal priorities. Money Follows the Person came about through advocacy at the federal level. Money Follows the Person was a critical piece of Medicaid policy that helped push for more community reintegration for people with disabilities.

The Community First Choice Option is a Medicaid waiver, and that was created again through strong advocacy at all levels. One thing to keep in mind and one of the reasons why as we came together to discuss this topic, and I think a lot of you know this as well, there has been a lot of talk about waivers under the current administration, and the reason why is that while the federal government may have not done the best job in their eyes changing health care at the federal level, they are now looking and pushing states to make changes at the state level. And so while the federal government's attempts have somewhat failed, the states are very capable and willing to pick up the slack. So issues like work requirements for people on Medicaid, making people on Medicaid pay a small premium or cost sharing like in Indiana they have this program called HIP 2.0. These are the types of things that waivers could establish in states. And so what we want to do is educate you on what the public input process is when waivers get written so you can push for or push against changes in your state's Medicaid system.

So let me take a moment to just do a brief background on Medicaid itself. Again, this is a program created in 1965. Medicaid and Medicare [Audio difficulty] Including people with disabilities. So in essence Medicaid is the program that pays for the health care for a large portion of the population here in the United States. The money that gets spent a combination of state dollars and federal dollars. One of the things you learn about when you are working in Medicaid is you will hear a lot about the federal match or the FMAP. When people talk about the federal match what they mean is the portion of state spending that the federal government will take on. States are not responsible for spending 100% of the Medicaid dollars. There is a ratio or a proportion. Very often it is 50/50, state and federal money to pay Medicaid bills but it could be more or less depending on the program. So why do waivers exist in the first place and how are they created? Waivers exist as a way for states to customize their Medicaid program. Every state when they create a Medicaid program, they create a state plan. It is their plan for how they are going to run their Medicaid. That plan has to be approved by the federal government. Waivers were created because while plans can be created, Medicaid programs change over time, and there has to be a way of building some flexibility into how states change and adjust their Medicaid programs. So waivers are a tool that gets used in order to customize their program. They're called waivers because when they are approved, waivers have the power to waive the federal requirements that the federal government imposes on states for their Medicaid program. What the federal government tells states is you can create your Medicaid plan, but you have to do certain things.

You have to make sure that people -- that if people are eligible for the services, they get the services. The federal government tells states, you have to have services that are comparable across populations. You have to make it available to everyone in a state. That's what Medicaid is supposed to do. But waivers are a way for states to say we want to create a new set of services but we don't want it make it available to everyone. We only want to make it available to a small slice of the population or we only want to do it in one part of our state. That's what waivers do. Waivers gives states that flexibility. And waivers have changed and expanded over time. Waivers can tackle a specific issue like states want to create more and home and community based services so they will write a waiver to it. There are waivers that can tackle a broad goal. For states that have seen managed care come in, states create managed care very often by writing a waiver, changing how they run their Medicaid system. It is important though to remember that states can write whatever kind of waiver they want but at the end they have to work with the federal government, the Centers for Medicare and Medicaid Services or CMS and CMS must approve these waivers. States don't just get to do whatever they want.

Moving on. So what I would like to do now is take a second to go through as an example different types of waivers. And I wanted to make sure the slide says it is incomplete list of waivers. This is not a comprehensive list of the types of waivers. There are lots of different types. But the ones I have listed here are some of the major types of waivers that states use. 1915 (c) and 1915 (i) tackle the issue of home and community based services. The 1915 (k) is the Community First Choice Option [which creates an entitlement for services]. Section 1115 and 1332, those are waivers that are more broad. Medicaid demonstration waivers and state innovation waivers. We will talk about that in a bit. [1915 (i) is not a waiver but like the 1915(k) is state plan services and entitlement]

But 1915 (c) waivers I think many are familiar with or heard the term before. That's a very common waiver that states use to build home and community based services.

So it allows states to provide services to those who qualify for institutional levels of care. In other words, when a state creates this waiver, they are creating a set of services that are available to people that would qualify for institutional placement and instead those people would be or are eligible for a set of home community based services. And it very often targets specific populations based on age or diagnosis. And states can have more than one 1915 (c) waiver and states can have more different types of waivers. States have sometimes dozens of waivers that are available depending on the state. All of these waivers, again, can be customized to how the state thinks it is most important.

It is important to note, too, that waiver categories can be created based on legislation. The Affordable Care Act when it was written allowed for the creation of new types of waivers [or state plans]. The 1915 (i) is one of those. It is a different type of home and community based service [state plan] and allows the state to build home and community based services into their state plan versus as a separate waiver program.

We don't have the time to get into the reasons and details behind why that is important but the basic gist is by putting these services in a state plan it means now you can't limit those services by the number of people. It saves money in the long term, and so it is a way of providing those services to a larger group of population. In fact, the 1915 (i) also expanded the types of services that could be offered. And I want to just make a comment. I appreciate people have already started writing questions. This is great. We are going to make sure we get to these questions at the end. And I see Carrie, our other presenter, she has already included a link where you can see at least in Illinois what waivers are currently offered. Every state and their Medicaid agency should have a list of the waiver programs that your state offers.

1915 (k) is another [state plan]. Again this was created to allow for an increased federal match for home and community based services provided under a state plan [and to create an entitlement]. What that means is it is a way to incentivize states. The federal government says, look, if you create this -- if you sign on to this Community First Choice Option, if you create it and write it the way we want you to write it, we will fund your services at a little higher level than we would normally. It is a way the federal government can incentivize states to make changes. The federal government has a lot of power to do that. And that power can be used to get states to create things like a community first choice program, but keep in mind federal government could also say hey, we will give you an increased federal match if you decide to write a waiver that forces people on Medicaid to work to stay qualified for Medicaid.

So 1115 waivers, these are broader waivers that get written, allow for broad changes to Medicaid policy and they can apply to large geographic regions and populations. 1115 waivers can expand Medicaid eligibility, provide new services, change the way services are coordinated. And when we say change the way services are coordinated, we are talking a lot about managed care. So very often if you are living in a state that has managed care, there is more often than not a 1115 waiver sitting in your state Medicaid office that explains why they made that change to managed care and what they're hoping to achieve by having this waiver included in their Medicaid plan. But that's not the only thing 1115s can do. We highlight here a graphic where you can create 1115 waivers to Medicaid expansion, public health crisis, substance abuse coverage, family plans services, et cetera.

And then there is 1332 waivers. And again this was created as part of the Affordable Care Act. And I can say what's being discussed now around 1332 waivers really has to do with -- 1332 waivers are being identified as a way for states to change or adjust elements of the Affordable Care Act. So when states start talking about maybe changing individual and employer coverage mandates, in other words making it mandatory for people to purchase coverage, when the federal government talks about shifting that over to the states, they're saying we want the states to write a waiver to waive those coverage mandates. Or when they have been talking lately about making it so that states have control over what plans have to cover when it comes to pre-existing conditions, what the federal government is saying we be want states to write waivers that would change how coverage is administered in their state.

You know, I was thinking about this slide before the webinar today, and I guess this -- part of the reason why we included this slide, it is almost like we are preaching to the choir but we did want to stress that there is such a critical importance to getting engaged into this process. And I guess that's why you are all here today is to learn how to get more engaged in this process. But we do want to stress that, you know, it is so important to get informed about the drafting and the public commenting processes. We're going to do our best to educate you today, but it really takes your individual effort at the state level to learn better how your state handles these processes. Every state's Medicaid agency is a different entity. The websites are different, the people involved are different, their priorities are different, and it really is up to you to take the time to learn these processes at the state level. When you get up-to-date on these processes, then you will learn how to provide your input. How can you learn how to support the waivers that expand care? Support the waivers that meet the goals and objectives of advocates in the city and town and county and the state where you live. Your input can fight against waivers that reduce care, that restrict access, that put your state on the wrong path. One of the most important things we want to stress, Carrie is going to do a real good job, I think, of getting into this in more detail is any successful engagement strategy includes connecting with the people had in power. And connecting with them before waivers get written. I mean there is a formal process to waivers and you should be notified by your state Medicaid agency when these waivers are being written, but very often the best advocacy occurs before those waivers even get started. And we will give you at the end of our presentation we do have some links to some national Coalitions that can guide you and kind of get you up to speed on what's happening in your state so you can be made aware of what could be coming down the line.

So at this point, and again I want to say I'm really happy to see some of the back and forth and the comments that are going on. This is great. Keep it coming. But at this point I'm going to switch gears, and I've teed up Carrie enough I think it is time to bring her in and I switch over to Carrie Chapman. I will run the deck and if I miss a prompt let me know. Over to Carrie.

>>CARRIE: Sounds great. Can you hear me, John?

JOHN JANSA: Yes.

>>CARRIE: First I ask everyone's forgiveness. I am generally a very fast talker and I am going to try to be slow and clear today because I feel like there's virtually nothing more complicated than the Medicaid program. And I will also add the caveat at the beginning that once you know one state's Medicaid program, you know one state's Medicaid program. So for some of you, some of what I say may seem a little bit generic but that's because a lot of the rules and law related to these waivers vary state-to-state, and so I'm trying to give the most general pieces of information that will apply to everybody. Let's recognize that your state may do things a little bit differently.

So just to go over generally speaking the Medicaid waiver timeline, in general, there is -- someone gets the idea to have a waiver. And again as John has said, I consider waivers to very much be two-sided coins. On the one hand, they are a waiver of federal law and protection for Medicaid beneficiaries. So there is always a danger in a waiver because federal law tends to be very robust and very protective, and as soon as you start to waive it, you put people's rights at risk. So, for example, you need a waiver to use managed care. And I think we've all experienced that managed care can have some ups and a lot of downs. So as a legal aid lawyer which is what I am, I'm always thoughtful about waivers. Because you're waiving rights and protection.

On the other hand, as John noted really importantly, the way we deliver medical services and support services is changing over time. And the federal law doesn't change very much. And so I think all of us are very supportive of people's rights to independence and to agency and to self-determination and able to be where they want to be in their home or another setting. And without the flexibility of waivers, we couldn't move those Medicaid dollars out of an institutional setting. We also in Illinois and in most states waive the income requirement for some of our waivers. So folks who otherwise would be over-income for Medicaid services are able to get them as a result of waiving the income limits that are in federal law. So again a waiver -- you just have to be very watchful about waivers. And this timeline on the rest of my talk are designed to help you feel empowered to do that.

So someone gets the idea for a waiver, a draft is created. The state agency -- the state Medicaid agency is almost always one of the main drafters although sometimes there have been circumstances where advocates have drafted a lot of waiver language and presented it to the state. Once that draft is completed, then the state has to post it for public notice and comment. And there's a 30-day public comment period, so the state has to post it. They have to advertise it. They have to send it out. If they've got email lists, they have to put it out through their website, if they have a Medicaid advisory committee they have to publicize it and folks have 30 days to comment on it. The waiver is reviewed by CMS. The federal Centers for Medicare and Medicaid services oftentimes negotiated there. At the end of the negotiate period they accept it or reject it. If they accept it the waiver policies are implemented. I'm going to talk a little bit more about each of these steps in detail.

I will say that in some states, specifically on 1915 (c) the public comment periods vary a little bit. I will try to be specific about those as I go along. John, if you can go to the next slide.

So who decides a waiver is needed? Oftentimes it is the Medicaid agency. Either as a result of needs that they are seeing themselves through program or because of needs that's being raised by external groups. And they can be very practical reasons. Here's something that's unusual to hour state and we want to -- our state and we want to try to address it. Here is an innovative idea we have for service delivery and we want to implement it in our state. Sometimes they see a systemic problem and they want to try to address it through a waiver. What we are seeing now and I think what we're going to continue to see more of over the next through-and-a-half years are very politically driven waivers. So people who want to change the Medicaid program not based on evidence about what makes a Medicaid program well or evidence about what makes people well but based on idea logically what they think public benefits should look like and the fact they think public benefits should be limited. Only the state Medicaid agency actually has the authority to present an official waiver request draft to the feds. So it isn't something that can be entirely created but in the advocacy community and -- but we can have an influence on it but we can't propose it to CMS. It has to come through the state Medicaid agency. But what we can do is think about our concerns, gaps in service, and ways in which the current program disempowers beneficiaries rather than empowering them and we can pressure both our single state Medicaid agency and our elected official on the need for a waiver.

And we want to say elected officials generally legislative members don't have direct authority over the single state's Medicaid agency. It is an executive branch agency in every state. But our elected officials can do a number of very powerful things in the world of labor. So they can do things like hold subject matter hearings on a particular aspect of the Medicaid program and bring people to testify who say yes, in fact, we need a waiver for that and here's some ideas.

So if you have elected officials from the same party as your governor, they may be able to influence your governor to influence the agency to initiate a waiver. And vice versa, to challenge a waiver. So if your single state Medicaid agency propose as bad waiver, then your elected officials are an avenue for pressuring the agency and pressuring the governor to either pull that waiver or make changes. So signs that a new proposal is near. This is really just a call to keep your ear to the ground. Under federal law your state Medicaid agency has to have some kind of Medicaid advisory committee, and they are supposed to make those meeting notices publicly available and they are probably subject also to

whatever kind of sunshine law you have in your state and open meeting acts laws you have in your state. Going to your single state Medicaid agency's website and looking for the Medicaid advisory committee that exists and going to those meetings or sending ambassadors to those meetings. Sometimes it will get into the press and so you guys have probably heard a lot about potentially kind of limiting 1115 waivers that states have been proposing or are proposing now to CMS now that they think CMS will be friendly to those limiting waivers.

You guys may have heard that yesterday the Trump Administration denied Iowa's 1332 waiver request, which I have to tell you I didn't love, and but it is disturbing that the administration would kind of dismiss a 1332 waiver request. So you can tend to see, you know, the trend in waivers in the public media. And then there's some great websites. There's a list of them at the end---health and disability rights sites like the National Health Law Program (nHELP), Justice in Aging, Empire Justice out of New York. You knee the evil Medicaid walk [?] those of us who spend all of our time up to eyeballs in Medicaid. Look to national organizations to keep us posted about rumblings about waivers. Probably the most important thing that you can do is build a relationship with the staff of your single state Medicaid agency. So try to connect with those folks and have them let you know when a waiver is coming.

So, again, the key players are your single state Medicaid agency. In Illinois it is the Department of Healthcare and Family Service, DHFS. There can only be one single agency. That is a federal law, federal center for CMS and state legislators can be key players. The most key players are you guys. Here is the most obvious way and the clearest way to have an impact on the waiver which is through the use of the publication of the waiver for public comment.

So for most waivers, 1115 and 1332 absolutely. The state Medicaid agency has to announce the draft of a new waiver and that draft has to be fairly specific. So it has to have key details, where you can get a copy of the whole waiver, contact information for the subject matter experts at the agency and instructions how to provide feedback with the deadline for it. So this is the first opportunity that you have to make substantive comments on a waiver. As a slight aside note, 1915(c) waivers the federal law encourages public input and requires that in the waiver request the state report thousand they got public input -- how they got public input but it doesn't require a notice and comment period. So in Illinois, for example, some of our home and community based service waivers actually they follow the public notice and comment period and others, like our HIV waiver has sort of stakeholder groups and surveys that they do and gets public input that way. So to know whether you are going to have a notice and comment period on a 1915 (c) waiver you have to look at your state law. For 1115 and 1332 waivers publication of the draft waiver and a 30-day comment period is required under federal law.

So we can go to the next slide. Sorry, you already did, John. Where are public notices posted? Generally agencies post them on their website. They may -- they either have to publish them in the state's administrative record. So kind of like the Federal Register most states have an official record that they publish about proposed rule makings, proposed waivers, agency-level changes. And in Illinois we have an Illinois Register that's published weekly or newspapers if your state doesn't have that. And this is how they have to try to disseminate it. They have to try it get it out on email list serves if they have them and make it publicly available as much as possible.

And you can find waivers that have been submitted on the Medicaid.gov website. So generally there is a 30-day public comment period. It is important to know anybody can get on a waiver. You don't have to be an advocacy organization or a MCO. Individuals can comment just as well as anyone else. And it is really important because as we've noted, we expect some very restrictive waivers to be coming down the pike, and so it matters that people come out in force to object to those waivers. The state needs to hold two public hearings on separate dates and separate locations on their 1115 waivers and so coming out and providing public testimony can be a very valuable thing to do. You can sometimes coordinate that with a press event and it is even more powerful. And if CMS changes the waivers significantly they may order the state to do another comment period. And so Susan just asked this is slide mostly about 1115. The public comment period for 30 days is 1115 and 1332. Whether your particular 1915(c) waiver for your particular population has a 30-day comment period is up to the state. So again in Illinois some of our 1915 (c) waivers have a 30-day comment period and some have another for public input.

So there's also a federal public comment period, and so when CMS decides it has a quote, unquote, complete application, they may have gone back and forth with the state a little bit on whether the waiver is complete or they want more information, but when they decide that it is complete, then a 30-day federal comment period applies. So they will put it up on their website, on the CMS website and tell you how you can comment. They review and publish all comments and they are posted to the final waiver and they're part of the administrative record for each waiver application. So the reason I included that in this slide is I think right now it is very important for us even when we feel like the tide may be against us in a certain waiver, so we feel like our state a proposing something bad and we think that this current administration CMS will approve it we create a strong record so as we watch how the waiver plays out we can say we warned you about this and were worried about it, et cetera. Eventually there will be a different administration and we want to have that pathway for change made clear to the next folks. And you are not limited on commenting on your state's waiver. There is no [requirement that] you have to be a citizen of the state. Or that you have to be a member of a Congressional district. No. You can comment on anyone's waiver. Oftentimes the national groups comment on a waiver. But I think if we see something particularly concerning out of a sister state on an issue of disability rights, that it is a very powerful message to send to the federal government to say we are not just looking out for people in Illinois. We are looking out for people in Montana. If Montana proposing a bad waiver for people with disabilities you care about it.

So what to include in the comments. You've got a lot of choices here. Sometimes what I do in the comments, for example, if I were commenting on another state's waiver I might be really generic and just be like this is against the spirit of the Medicaid program. Here's some statistics as to why this is just bad policy and that would be the end of my comment. Sometimes I might put in my comments a question. I don't understand how this is going to work. It seems to me if you do "A" then "B" is going to happen. How are you going to deal with "B"? "B" is something that's ridiculous. I generally do try to cite best practice, evidence-based practice, any statistics I can get my hands on so it doesn't just sound what I'm saying I don't like this because me, Carrie, thinks it is not a good idea but to gather information from experts to say hello, this is a bad idea. I might also actually go line-by-line and edit. So I might say you should take out this piece of information, you should add this piece of information, very specifically. And the more the waiver affects me, the more likely I am to do strike out and additions in my comments. And again, this is somewhat a document that's intended to persuade. It may be very useful to talk about what you like in a waiver, even in a waiver you overall don't like.

Because agencies respond better with some positive feedback. And then -- particularly if they make a change based on feedback in different iterations of the waiver. Thank you so much for making that change. I was really concerned about that, and I'm glad to see that your new proposal has taken X out. I also want to talk about. But again, anyone can submit comments. There is no, you know, there is no bar that you have to meet in order to submit comments. The point is to hear from the public, to hear from the people who are going to be affected by the waiver. John, if you want to go to the next one.

So it is really important, I think we've all seen this and the disability community I think has been a leader in showing this. I have been awed by the power that the disability advocacy and disability community have shown over the past eight months that head count matters. So oftentimes even if a national organization that you like and you're affiliated with submits public comments and you think that's great. That's everything I would ever want to say, you may want to both sign on to their comments and take some portion of them for your own. I've never seen a national organization that didn't say please take our comments and incorporate them into your comments. Because they actually count how many responses they get. So in addition to reviewing content, head count matters. If you want to write a letter as an individual citizen and get like-minded people to sign on to your letter who might never kind of take the time and energy to put in comments themselves, that's great. Again, you know, national organizations will always tell you take stuff from our comments. Specificity is powerful. It makes it clear you know what you are talking about. So to either be able to refer to data and statistics or even your own personal experience in a very concrete way. You made this change and this is how my experience was diminished or my health diminished or health care access was less. That's really powerful. And if you are either writing as a person or on behalf of a social service agency kind of explaining this is why my voice matters. My agency serves people with X issue and we have 20 years of experience doing this. Or I have been parenting a child with, you know, X and Y medical complexities or I'm a person with this health condition and this is how the waiver is affecting me. That context really is powerful.

So the public comment period comes basically after the drafting is done, but as John said previously really the best time to have the greatest level of influence is when the draft is being created. So again, that's when using relationships with your single state Medicaid agency to be like wait, don't do this or this is a bad idea or a good idea this is when a subject matter hearing by an elected official might have a lot of influence, lots of testimony at that subject matter hearing about what the content of the waiver should be. Public pressure, pressure through the media. We know you are drafting this waiver. We're very concerned about it. Here's why. Before it becomes a complete draft is when you have the most power to change it. Next one. Public commenting is not the only way to have a voice. Please stay in touch with agency leaders, organization leaders, leaders at your single state Medicaid agency, elected officials about your story. Keeping that present for people, reminds them that they need to use the power they have as well as you using the power you have to make sure that we keep good waivers and don't have bad waivers.

Submit editorials and letters to the editor and use social media as you guys have all seen and many have done recently. Getting letters to the editor, getting editorials, talking to your editorial board and then just blasting it out on Facebook and Twitter and Instagram to raise awareness about a waiver can be incredibly valuable. Ask your local representative to hold a town hall on a waiver or Medicaid issue and then, obviously, grow your partnership. The more voices, more impact and the more detailed and specific and forceful your comments can be when we all join together and share information and knowledge and expertise.

You can go to the next one, John.

So again, you know, find the phone number and contact information of the writers of the waiver at your single state Medicaid agency. No who your Medicaid director is. You know, maybe in calm times when a bad waiver isn't right on the horizon is when to cultivate personal connections with your single state Medicaid agency, CMS, advocacy groups and elected officials so that then you can call on them when a waiver is proposed or being drafted. In a moment of crisis you already have that relationship. I know I'm speaking to the choir and a lot of us know to do that. Some had never really thought about cultivating relationships at their Medicaid agency. What we find in Illinois is that even though decision makers may change based on the administration in the governor's office and the party of that administration, lots of folks work at single state Medicaid agency their whole careers and those are the folks that do the drafting and developing relationships with those folks, it wouldn't work for Medicaid in a state for 30 years in general if they thought Medicaid was terrible and they wanted it to die as a program. I mean there are exceptions to that but in general those the case. Cultivating relationships with them.

There are a lot of folks at CMS right now who are lifers at CMS and while they have to follow orders of their superiors and they do not have a ton of flexibility right now to do things we might like, they are sympathetic and empathetic and having relationships with them cult mating them and keeping them can be goods. And then just make sure that you are keeping a good record of what you are doing. First of all, so you can keep good track if changes are made to the waiver over time, that you can see how it is changing. That you can prove and establish when you made comments, if somehow your comments don't show up somewhere. You know, waivers tend to sort of come back and come back and come back, waiver ideas, bad ideas come back, good ideas come back and being able to have a longitudinal record of what your position has been and what your points have been and what your evidence has been will just mean you are not reinventing the wheel over and over again.

So reasons for waiver rejection. So the approval of waivers is, in fact, a somewhat political process no matter what affiliation of the administration is. The former administration made some attempt to dissuade states from waivers that I would consider to be restricting eligibility. On the other hand, they made political compromises on waivers for Medicaid expansion. So honestly there is a fair amount of politics in approving or rejecting waivers. Sometimes waivers can be too grand in scope so Illinois had sort of a massive transformation 1115 waiver under our previous governor, and I think part of CMS's concern about it was that it was just enormously broad and complex and didn't drill down very deeply into how all the changes were going to be made. I expect that -- so the head of CMS, who may, in fact, be proposed as head of HHS basically as soon as she was confirmed, she sent out a letter saying send me all of your 1115 waivers for requirements, lockout periods, co-pays, deductibles, a parade of horribles. Those would have been rejected in the past and I think they may be approved now. So again who is in power as to whether your waiver is approved but definitely it means the stakes are higher for us and that we need to stay more vigilant about waivers. Not everything require as waiver. State Medicaid agencies can make some changes to the program just by the state plan amendment.

Every state has a state plan which is essentially the contract between the state and feds a Medicaid program. That state plan has to be consistent with federal Medicaid law but you are able to amend it provided you are not changing -- trying to change federal law. You can amend it through what's called state plan amendment process and there is really a fair amount of play in that through the state plan amendment process. There is no comment period for state plan amendment. Unfortunately, those are not very transparent processes. So resources. Again, don't do all the work. National organizations are minding the store on waiver activity in each state, and so rely on them. You can always do your homework once they've raised an issue for you. You don't have to be spoon fed everything you are saying but let them also keep oh eye on what may be coming, what may be in the draft process, and use them to help you monitor waivers, particularly if you feel like you have the bandwidth to weigh in on some other states waivers on issues that are very close to your heart. So I might care about 1115 waivers with work requirements that come from any state because that might be a huge issue for me. And so I might use one of those national organizations to help me keep my finger on the pulse of that since I live in one state and hard for me to keep up with everything.

And there you go. So again my take away is that a lot of you guys may have been engaged in the waiver process before now and fantastic. Please keep it up. This is unquestionably one of the biggest fights we are going to have over the next three-and-a-half years regarding the Medicaid program second to the budget fight and block granting but still a very big fight. For those of you who have not been so engaged in the waiver process, I really encourage you to feel empowered to be engaged. Your voice really does matter. There is nothing that's been clearer than the work that the disability advocacy community has done to demonstrate that and we just need to keep it up and keep our focus on waivers and pay attention.

AMBER SMOCK: Hello, everybody. This is Amber. Can you hear me?

>> CARRIE:Yes.

AMBER SMOCK: Fantastic. Thank you to John and to Carrie for their presentation today. I do want to note that we have an opportunity for people to ask questions. I see that we have a few people asking questions in the chat box right now. Let me see. One easy question that's happening is from Mark Morrison who is asking whether the CART is going to be available for download as well as comments and questions.

So people should know that after this webinar is over, the PowerPoints and I believe the audio and the transcript are all going to be posted on our website and shared out back to you so you will be able to access those. Plus we will post the link to those resources on the disability power for community integration's Facebook page and start getting that shared. So people will be able to access this. You will be able to download the power point. You will be able to download the transcript. You will be able to download the audio. Okay. Then there is a question of whether or not the Q & A in the chat box will be available. We can see if we can do that at the end. See if we can copy and paste that into a document for people to say. We will try our best on that front. John and Carrie are there questions you guys would like to address coming in from the chat box?

JOHN JANSA: This is John. I actually was able to pull some of the questions that came up early on in the discussion and, Amber, I want to say thank you for sort of answering those as we go. But I do have a few that I think were still floating out there.

One of the first ones actually that I want to raise, Carrie, this is for you, someone -- I apologize I didn't get the name, there was a question to say can a waiver be approved but then terminated if it is found that there are major problems or issues with it? And how would that work?

CARRIE: So all the waivers require that the state explain how they will evaluate them. So how they will evaluate whether they are cost neutral.

That's something we didn't really mention waivers can’t be more expensive. They have to be cost neutral to the original program. So that's evaluated. And some evaluation of efficacy is usually required and the state has to write in how it is going to evaluate and sometimes there is a public input portion for evaluation. Yes, I think you could pressure a state to terminate a failing waiver. And I think that may be something -- that isn't that's been done a lot before. It has been more pressure to amend the waiver, to change the waiver. But I think if we get very, very bad waivers for things like work requirements that we should gear up to how do we terminate a waiver and the place to start first is to say how is this waiver going to be evacuated to try to influence the drafting of that evaluation. And then to keep an eye on the data that comes out of the experience of the waiver once it is implemented. And then pressure CMS to say this isn't working and you should stop.

JOHN JANSA: Great.

AMBER SMOCK: This is Amber. John and Carrie I notice there seem to be questions about what do we do about states where there are waivers but there are significant wait lists for those services? I don't know if you two of you have feedback on that. I have some thoughts but I wanted to see if you have some.

CARRIE: Well, for me the challenge of wait list is what I said at the very beginning about waivers which is that they are a waiver of right. And so for most waivers, wait lists are permitted because what you are waiving is that essentially sort of that entitlement piece that comes in the federal Medicaid Act. It is deeply concerning to me when any waiver includes that, and there are a number of waivers in Illinois that do and some don't. But it is permissible. Now, that doesn't mean we are stuck with the amount of folks we have on the wait list, but as a legal matter in terms of suing and saying this waiver is impermissible, it is not because that entitlement has been waived. But I leave it to you, Amber, to talk. There is advocacy that can be done.

AMBER SMOCK: This is Amber. I know that in some states there have been efforts to go through the waiting list and to evaluate whether people who are on the waiting list still qualify. Some of those wait lists stretch back for years and years and somebody who is on the wait list now could be somebody who signed up 10, 12 years ago. Some states do have a cleaning out process but this is a difficult problem and I think Carrie's point about the waiver of right is very important.

Let's see. What other questions are you guys seeing in here?

JOHN JANSA: Amber, this is John. I will give you a second to go through the comments. I think I have some from early on. I want to actually respond, there were a lot of questions early on about how can I find these specific types of waivers? Someone had asked a question about 1915 (i) waivers and where can I find information on that? And some people were kind of enough to include links to some resources.

One of the resources Carrie brought up the kff.org has a lot of good information on waivers, and the Medicaid site Medicaid.gov does have a link -- interest is a link posted that takes you to the page you can literally select the type of waiver you are looking for and it will list all the states that have that waiver. The thing to keep in mind with that website is they will list all waivers that are approved or pending or even those that have ended. So make sure when you are looking at a list of waivers for a state, make sure you are looking for those that have been approved, if you are looking for ones that are currently in place. If you are looking for ones that are in the process, those would be pending. So those -- that's a really good resource to understand what waivers are in place.

AMBER SMOCK: This is Amber. Okay. So I would like to add a couple things about the wait list decreasing. Allen Bergman said best way to decrease wait list 1915 state waiver is lobby them for the state match. I think some disability advocates would also say we need to convince Congress to pass the Disability Integration Act to make sure people have access to home and community based services in every state and increase the momentum to make sure to decrease the wait list. There are a few different answers for how to decrease the wait list. I just wanted to put that out there.

Carrie and John, do you have an answer for this question of who monitors the state's waivers?

JOHN JANSA: Go ahead, Carrie. I was just going to say that had been asked by a few people who do you contact at CMS? Who is responsible at CMS for approving waivers?

There is definitely a structure within CMS, and I was going to kick it over to Carrie. I felt like she would be the best person to give that detail.

>> CARRIE yes or no.You're right. I should have a better contact at that start but I'm going to have to send that out later. I'm not really sure are with the starting point is at CMS. Officially CMS is the monitor of a waiver. So they are officially the waiver police, and they are supposed to be monitoring and seeing if, in fact, you're appropriately using your waiver. I think we can all imagine the two challenges with that. One is if you have an administration like we do now in CMS that they are not going to be looking at bad waivers with the same critical eye that we would like. And also they are particularly concerned about the cost. That is CMS's major focus is are you spending more money as opposed to are you serving more people?

And this is one of the challenges with the entire Medicaid program and one of the challenges with waivers as well. We basically generally have single state Medicaid agency and the federal Medicaid agency who are not particularly open to engagement with us about problems. And are very fiscally oriented and not very program oriented. But I also feel like our demonstration of power recently should make us feel differently about our interaction with those two groups when we flex our collective muscles we have a lot of power, and we need to be using the lessons we have used about that power going forwards on issues like waivers, not just program issues and not just budget issues. And so I will try to get out con tact at CMS for the waivers for folks. But it is also about the public presence. Showing up outside people's doors, writing letters, showing up at your single state Medicaid agency trying to force a meeting with the state Medicaid director, trying to meet with elected officials and using friendly ones to try to get a meeting with CMS. And coming in from a position of power and not just, you know, please, please, please, why don't you monitor our terrible waiver. But we are watching you and you need to be watching our state.

AMBER SMOCK: This is Amber. I would like to also point out, I'm not sure people are aware but there is a National Association Of State Medicaid Directors. Every single state their Medicaid director gets together with other Medicaid directors and they talk about state trends and what's working in their states and what could they borrow from each other. So something interesting that has happened is that after the great recession of 2008, there was pretty much a national movement toward introducing managed care in a lot of states. And that's where that effort has been coming from which is that the state Medicaid directors have been talking to each other about managed care, managed care companies have been selling themselves to the Medicaid directors and so forth so there has been a lot of ground swell for managed care in part because of that network. So I think it is very important to remember that the state Medicaid directors talk to each other and they pick up ideas, whether they are bad ideas or good ideas, that's important.

The other thing I wanted to mention also is that the federal election of last year after that a number of key health care staffers did leave the U.S. Department of Health and Human Services and also CMS. One of those people that left CMS is named Andy Slavitt. Andy Slavitt has been a freelance consultant I think, not sure of his day job right now but he posts all the time on Twitter about developments in Medicaid and so forth. So just remember in the current climate, yes, ask questions of people that work at CMS but remember there are people floating around now that used to work at CMS and now doing basically health care consulting and some of those people can be useful.

>> CARRIE: I second that point, Amber. They understand the inside of this and they understand who is still left there, who you might get a sympathetic ear to and I guarantee you that they want to see Medicaid a strong as robust program as the ACA survive. Another person is John Fadrow who does a lot on Twitter and podcasts. He and Andy Slavitt are people you might reach out to personally and say here is what I'm trying to accomplish.

I need an insider to tell me how to do it.

AMBER SMOCK: Just in case anybody missed it, Allen Bergman pointed out Cindy Mann is no longer are the administration and doing health care consulting work and Medicaid stuff. The key stuff we are concerned about.

Cindy Mann was there when everybody was fighting about the home and community based settings rule, et cetera. There are now people outside the government who were involved with drafting rules around home and community based setting over time, all kind of stuff. Those outside people, inside people that's important.

JOHN JANSA: This is John. The one thing I would add on that point, one of the resources we put on this presentation was a link to an organization called Health Management Associates. That is a large multi, multi, multi-million dollar maybe billion dollar consulting firm. The reason why we included that is because managed care is a business. The reason why these companies do this work is because there is money to be made from it. And this Health Management Associates produces every week a weekly round up what's going on in every state. A lot of it around managed care. And anyone can sign up for that Weekly Round-Up. You submit your email address and they will send you every week a round-up of what's happening in every state and it is a good resource to learn what states are doing when it comes to waivers and managed care moving forward. Along with timelines in terms of when these states plan to move ahead with these managed care initiatives.

AMBER SMOCK: This is Amber. I have one other thing to say. In terms of this question of accountability with the waivers and surveying people with disabilities of all kind, you know, as some of you know I work at Access Living. We take a variety of approaches to doing our advocacy work. Sometimes that may mean policy work. Sometimes that may mean media or public affairs. Sometimes it may mean community organizing, direct action, sometimes it means protests, sometimes it means working with others to pursue legal action. And I think there is a question of what is the ideal accountability. There is no ideal accountability. It is basically getting what you need. And getting what you need is not something that's even across the state but I have to say that getting what you need is done a lot easier when you cooperate or work with other people who are looking for the same thing. Not cooperate but collaborate with other people looking for the same thing.

So there is a degree to which if you want accountability we have to step up and do that work to work with each other and ask key questions and find the right people to be accountable and recognize there may come a point where there needs to be a lawsuit. There may come a point maybe you need a lawsuit but can't get anybody to take it and there may be good reasons for that. Just keep looking for ways to tell the story to different folks. I just wants people to remember it is important to remain flexible and also important to remember that you're not alone. I just wanted to weigh in with that.

JOHN JANSA: This is John. I was going to jump in here. I am still seeing a lot of back and forth which is great. I want to raise a question that was brought up earlier, and I'm going to take a stab at answering and then Amber or Carrie if you want to jump in.

The question was what do you do when the state intentionally tries to slide things through without having any public comment. I'm thinking about the managed care changes in Illinois. No public comments, no hearings, no meetings.

This is a really good question because I think we talk about the waivers as being this very important piece of the puzzle and it certainly is. But we all know that changes occur after a waiver getting approved. Once a waiver is approved, programs begin development, processes start, task forces are created, groups are formed, people try and figure out how these services are going to be administered and when they're going to start, and so while public comment around the waiver itself is important, basically the opportunity after a waiver is approved, that doesn't mean that the advocacy stops. Every state Medicaid agency will create and have advisory committees, groups, meetings, discussions, and those meetings by and large are open to the public. There are requirements around posting notices around meetings and so, again, it requires you to pay attention to what's going on at the department and attend the meetings where discussions take place around what the state intends to do. And get involved and very often on committees and task forces they require attendance and participation by people from the community. And so there is a -- very often there can be opportunities to actually sit on some of these commissions.

AMBER SMOCK: This is Amber. Carrie, do you want to say something? I don't know if you want to weigh in there.

CARRIE: No, it is okay. If you have something to stay, Amber, go for it.

AMBER SMOCK: This is Amber speaking. Hold on one second. I'm trying to scroll back on the CART but having trouble there. So I want to add though that, yes, there is a question of -- okay, let me back up for a second. If there are things being slipped through and people don't know about it, I think it is important to try to develop relationships with people who are going to be able to hear about those things, you know. So being able to be allies or stay in contact with people who are on the policy side, they do this all the time in every state. So making friends with policy people if you know a policy-type person is important. But if something is so outrageously bad that it is just completely unacceptable, you really should be talking to the press about this. You really should be trying to say here is somebody's personal story and because of the type of health care that they're getting or the type of long-term services and support or lack of them that they're getting, you know, people's lives are being screwed up. You should take that to the press because right now the public is at a point where they have been hearing constantly for months and months and months about health care and Medicaid because of the Congressional fight for health care. So right now reporters are a little more awake to these problems than they used to be. But trying to get them in the press because when things like this get in the press, it tends to get a reaction from the companies or from the state, right? Because you are embarrassing them. So just keep the media in mind as a possible tool here.

CARRIE: I would second that, Amber. When we have more friendly administrations we do more of our work internally. When we have less friendly administrations we're going to have to take our work to the street. But I think people who never really thought about these issues before are thinking about them now. So we really do have an opportunity to build Coalitions and tap into energy, to move the ball on things like waivers that the average person may have known zero about up to now and now if we say look at how they're trying to destroy Medicaid not just by defunding it but by terrible waivers they are sort of motivated to be, like, yeah, I don't want that either. And frankly, five years ago when some bad waivers were being pushed, we didn't have them. We didn't have their voices. But it is an outside game, it is a public game at this point a lot because we don't have friendly insiders as much.

AMBER SMOCK: This is Amber. One other concrete question people were asking about this question how to talk about institutional bias with policy makers. What is the institutional bias. If you say those two words most people aren't going to know what they're talking about. Working on this process with the Medicaid waivers being able to talk about the institutional bias is very important. As I pointed out on chat when Medicaid was created in 1965, you know, if you meet an institutional level of care as determined by your state, then you have a right to access nursing facility or an institutional placement. But the same is not true if you have that level of care and you want to get your services in the community instead.

So the problem is is that, you know, the Olmstead Supreme Court decision says you have the right to home and community based services if they exist. You don't necessarily have a right to them if they don't exist at all in your community, so that's a very difficult thing. So the big thing is that, you know, we have to talk about how, you know, people who want institutional placement of whatever kind have the right to get that now but that's not true in the states. That's why we need the disability integration act because that would change the right to be able to access services in your own home.

I think just making sure that people understand that the choice or the option, the option to live in an institution has always been there. It has been there, like, for 50 years. The other thing home and community based services has not been there. And we also talk about institutional bias when we talk about money. When we talk about Medicaid funding a greater percentage of Medicaid funding is spent on institutional placement than is spent on home and community based services. The Kaiser Family Foundation website has a data chart where they talk about how much is spent on institutions and how much is spent on community living. But being able to talk about the institutional bias and moving the dollars making sure that people actually have the right to access home and community based services creates the right and drives the money and expands the opportunity. It is very important.

So any other questions that people -- John and Carrie, what else do you want -- any other questions we want to answer?

JOHN JANSA: I wanted to make a comment, this is John. You know, I want to make sure that, you know, keep in mind we are sitting in our group and we are kicking around these issues that are at a really detailed level. It is important to remember that, you know, part of advocacy is educating people that really don't have much or any understanding of how any of this works. You know, there's plenty of people talked in Washington trying to repeal and replace the Affordable Care Act. Legislators were

sitting on TV saying we need to give flexibility to the state. We don't need the federal government telling states what they have to do. And people hear that and there are literally millions of people out there that believe that the federal government is telling states what they have to do and states have no flexibility in how they run their Medicaid program. We have an obligation and responsibility to explain to people in a very basic way that that's not true. And if everyone just took five minutes to look at your state and what waivers are currently in place, if you hear someone say something like yeah, the federal government shunt be telling states what to do, you should be able to come back and say do you know that right now our state has 15 customized programs around Medicaid to provide customized services to specific populations because that's what the state thought was important?

That's what waivers are. They're customized programs that states have the right to create. And if we spend some time talking about that at a basic level t is going to help people understand oh, really? So what are they trying to do at the federal level? So you can say here's what they want to do. When they say changes, this is what they really mean. But it is so hard -- like Carrie said. Medicaid can be so complex and hard to explain to people. But if we take the language that's being used and turn it around on people and say they're saying this but here's what's really happening, that can do nothing but help the process of getting the change that we want to see happen.

AMBER SMOCK: This is Amber. There is a couple more questions that have come in that I think are relevant to the topic of our webinar.

So there is a question about why is it hard for people in institutions to be able to go into the community on waivers?

I want to say this. My organization Access Living conducts community transition work, specifically we move people who live in nursing homes (not ICF-DDs) but move people from nursing homes to their own homes in the community. In order to do they have to go through 122 specific steps in order to make sure the full move is complete. And that includes being able to get a subsidy for housing, it includes housing inspection, it includes locating a place to live. It includes getting food and Medicaid, transitions from the doctor, it includes training on independent living skills. It includes, you know, countless things that are needed for somebody to move from an institution to the community because it is not a simple thing to do. So if you think about that 122 steps, that's a pretty significant amount of work. And when we're talking about Medicaid waivers, creating Medicaid waivers involving different partners and making that happen, people need to understand how complex that is and allow for flexibility so that people's individual needs can be supported. So I want to put that as an answer to one question.

Let me think about this. Angela is asking about how the budget -- the federal budget that was passed by the House yesterday and went to the Senate, yes, it has big cuts to Medicaid and Medicare. I don't think I can offer specific details right now, but it is incredibly important that a lot of the same target senators who heard from all of you during the fight to save Medicaid, those are a lot of the same senators that need to hear from you about how important it is not to cut Medicaid, Social Security and other programs in the federal budget. Housings, the HUD money, that's very important. So if you live in West Virginia or Alaska or Arizona or Texas or Tennessee, those are, again, key states because your senators need to hear from you and they may swing the difference when the Senate decides to vote on that bill. So the Senate is where the fight is at on the federal budget.

John and Carrie, are there other items that we need to answer here? Oh, I see that Allan Bergman pointed out that there are 239 different 1915 (c) waivers for home and community base the waivers. There are a lot of waivers out there but each state will have a limited number of waivers and everything. But the big thing really have to watch out for when a new waiver is created because a lot -- sometimes the people that create waivers don't actually understand how the services need to work and that's why everybody's input is so important. John and Carrie a little bit of time left if you have any final thoughts.

JOHN JANSA: This is John. I just threw up on the chat a link and I was typing out an answer. The Families USA initiatives around advocacy, around the budget process and what happens now. A lot of those Coalitions that came together to fight against the efforts to repeal the Affordable Care Act I know will continue their work to fight against the cuts that are being proposed to Medicaid and Medicare. Protect Our Care is a great Coalition that will be part of that process and there will be others. I guess if there is a good side to all of this fighting we have done there is a lot of really good Coalitions that we know are out there and will continue to fight. So get connected to them so that you can be part of the fight moving forward.

AMBER SMOCK: Carrie, any final thoughts?

CARRIE: No, I would second everything that you and John just said and just said while it is very daunting and the stakes are very high, early victories show that we can make change. This is by no means a losing battle. We need to not give up. We need to big in, because we are actually winning. Again, it has been said before and it will be said again but the Republicans said we will have a bill on the president's desk January 1, January 21, January 22 to repeal the ACA and they don't. And so I think we need to be -- to remind ourselves that we have the power. We just have to keep using it.

AMBER SMOCK: Okay. This is Amber. I want to thank John and Carrie for presenting on today's webinar. I think your background and knowledge about these issues is incredibly important. I also to thank the many commenters who weighed in or shared their thoughts while we were presenting on this webinar. I think the final thing that I would have to say just on behalf of Access Living and also and behalf of ADAPT of which I am a member is that I think it is important to remember that we are trying to defend the services we have and trying to expand opportunities we know people need. We know people have wait lists they are on. We know people are not getting the health care that they need. We need to keep fighting for those and saying hey, there is a better way to make this happen. It is incredibly important people support the Disability Integration Act was a proactive measure for expanding home and community based services. A lot of people in this country now are talking about how we need to change health care, we need to change home and community -- we need to change our long-term services and support. Our idea is let's invest in it. Let's make it happen. Let's make sure people understand how important all of this is to so many thousands of people with disabilities across the United States.

I hope today's webinar was helpful to people and offered new tools and ideas for educating and mobilizing their community. We want to thank you and thank you to the Illinois Network for Centers for Independent Living for their technical support and we will be posting the material from this webinar online and sharing the link for that with you so you can get the word out to anybody that missed the webinar.

Thank you, everyone.Have a wonderful day.Some of you have a three-day weekend and please enjoy your time off and that concludes this webinar.

Thank you.

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