ASHLEY BROMPTON: Good afternoon, everyone. Thank you for joining us on our webinar today. My name is Ashley Brompton with the Center on Victimization and Safety at the Vera Institute of Justice. I would like to welcome you to today's webinar. We are pleased to bring you this webinar as part of our 2020 End Abuse of People with Disabilities webinar series, and welcome to Zoom. We are so excited to have our first End Abuse webinar on Zoom today. We do ask that you bear with us as we go through growing pains with a new platform. We are going to try to smooth this process up as much as we can over the next few webinars. But please just bear with us while we're going through some of that, figuring out what the best way to do this for our audience is. But we so appreciate you coming today. We have a few quick logistical things to go over before we begin the session today. Today, we will have American Sign Language interpretation, Spanish language-- OLGA TRUJILLO: Uh-oh. [KEYBOARD KEYS CLICKING] OK, so Ashley is a little frozen right now. And so I know Ashley was going to talk about the fact that we have Spanish language interpretation as well. Oh, there's Ashley again. Hi, Ashley. [LAUGHS] ASHLEY BROMPTON: Sorry about that. I am back. I apologize for that disruption. As we all know, more than ever, technology is a challenge. I want to make sure that we didn't miss anything. So I'm going to backtrack just a tiny little bit. We do have captioning available today. If you would like to turn your captioning on, please click on the little arrow next to the closed captioning symbol at the bottom of your screen. You can either select Show Subtitle View or View Full Transcripts. Once you do so, the captions will appear either below the videos or to the right of the videos if you chose the Transcript view. If you were using both the American Sign Language interpreter and the captioning today, we recommend using the View Full Transcript view. 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The webinar recording and materials will be posted on our End Abuse of People with Disabilities website within two weeks. You should have received an email today reminding you about this session. In that email, it should have also included a link to materials. That link to materials would include a PDF copy of the PowerPoint, as well as a record of attendance for today's session. You can download those at anytime by clicking on that link in that email. We're also going to put the link in the chat. But please note that the links in the chat are not clickable. So please go back to that reminder email that you should have gotten from Zoom. And to make sure that you are able to access the materials, we will also put that link in the follow-up email that you're going to get from Zoom. So if you didn't see it in your reminder, you should see it in the follow-up email that you're going to get from Zoom as well. And again, that will include a copy of the PowerPoint today and the record of attendance for this session. Our presenters today are Olga Trujillo and Kelly Israel. Olga Trujillo is an attorney, speaker, and author who, in 1993, was diagnosed with dissociative identity disorder. Her experience over the past 30 years has been an attorney for the US Department of Justice and a consultant to many local, state, and national organizations. She is the co-founder of Latinos United for Peace and Equity, a national nonprofit that provides training and technical assistance to help enhance services and responses to survivors of gender-based violence. Olga is an internationally sought speaker and author and is featured in the video A Survivor's Story, a documentary and training video based on her personal experience of violence. Her memoir, The Sum of My Parts, was released by New Harbinger Publications in October 2011. It has been translated into Japanese, Chinese, and Spanish. Olga is one of only a handful of people in the United States that speaks and trains internationally on dissociative identity disorder from a lived experience. Kelly Israel is a policy analyst at the Autistic Self-Advocacy Network's national office. She works to advance the legal, legislative, and administrative policy objectives of ASAN. She is a graduate of American University Washington College of Law and served as student attorney in its disability rights clinic. In that capacity, she was legal counsel for clients with disabilities in a wide variety of cases, including special education and Americans with Disabilities Act reasonable accommodation issues. She also worked for other public interest organizations on issues such as the death penalty and guardianship in the United States. Her chief interests are in the education of children with disabilities, supported decision making as a viable alternative to guardianship, and the overcriminalization of people with developmental disabilities. Before I pass it over to Olga and Kelly, I want to share a little context with you for this webinar today. As we were working on our response to COVID-19, we realized that we needed to think about both individual and systemic advocacy strategies and tools and resources that advocates and people with disabilities can use to ensure that they're able to receive access to services, particularly health care services, during this time. So in thinking about individual advocacy and systems-based larger advocacy, we reached out to Olga and Kelly to talk about different pieces of what that might look like and to provide tools and resources for you as advocates and for people with disabilities to ensure access to services and health care. We think that this webinar is going to hopefully provide you with some tips and tricks and resources that you can use and some advocacy points that you can use when you're dealing with situations that are coming up for your clients with disabilities during this time. I'm going to first turn it over to Olga, and she is going to talk a little bit about individual advocacy. And then we are going to pass it over to Kelly for the second half of the presentation. And with that, I am going to turn it over to you, Olga. OLGA TRUJILLO: Thanks so much, Ashley. And thanks, everyone, for being here. I'm really excited to be here. I'm also really excited to hear your presentation, Kelly. It's super interesting to me. OK, so Ashley is going to be advancing the slides. So I will ask her to periodically as I go through my presentation. So we're going to talk about strategies for directly supporting survivors with disabilities during COVID-19. And then let's move to the next slide, Ashley. So before I go into my slides, I wanted to give you a little bit of context about where this kind of information is coming from. So as Ashley noted in my introduction, I was diagnosed with dissociative identity disorder, also known as DID, in 1993. And if you've never heard of it, in the past, it was called multiple personality disorder. And at the time, I went to see-- I went to see a really amazing clinician and did a tremendous amount of work on this. And so the PowerPoint and the presentation that I'm about to do is from a lived experience of DID and a lot of other co-occurring conditions like anxiety disorder, but all mental health-based disabilities. And so I'm going to walk you through my experience of it. Because what I've learned over the past few years is that my experience of it might be because I have DID, but other people have to do similar things with the disabilities that they work with each day. So, OK. So that's a little bit about me and DID. And also, if you have any questions about the disorder in particular, I'm really, really happy to answer them. OK. So when we're talking about COVID-19 and we're talking about people with disabilities, there's one thing that I've noticed across the board, and I've experienced myself, which is this health crisis and the economic crisis that came with it and all the ways in which people are addressing it or not addressing it is challenging our coping strategies. And so I wanted to go into a little bit about the coping strategies that a lot of people employ. And when I say-- I'll just say a little bit tongue in cheek, but not tongue in cheek at the same time, when I use "our," "we," and "us," I'm not talking necessarily about myself but about people with disabilities. So I'm including myself into it, but I just wanted you to know because we're talking-- because I have DID that I'm not referring to myself in a plural sense. OK, so there are strategies that we employ each day that help us move through the day and help us move through the world. And those strategies that I've learned to rely on for over 25 years are similar strategies to what other people with other cognitive disabilities and mental health disabilities also do. So one of the big things is creating routine. And it's a huge asset because when you're doing-- if you have a certain routine, then when you're having a hard time, that routine is very comforting. And you can go through the motions of getting up each day and doing the things that you normally do. There is calmness and a sense of peace in a routine. The other thing that I learned to do was to limit stimulation. And that can be like a little bit of everything. It can be how much is going on at the same time, which is a big thing for me. So I'm not a multitasker. I try really hard to focus on what I'm doing when I'm doing it. I can pay attention to and actually have to pay attention to what's going on around me, which is why the more that's going on in front of me makes life really difficult. And that's true for a lot of people with mental health issues. So limiting how much you're doing and taking in really helps with that constant assessing. So for me, I'm constantly assessing for safety. It's my routine. It's my every day, and it has been since I was a kid. And so the more that I'm-- the less that I'm sleeping, the worse that I'm eating, the more that I'm stressed, the harder it is to take all that in. So limiting stimulation really helps with that. So I manage how much is going on around me. And I'm pretty good at it now so I don't even notice it anymore. But right now, that's a little bit different. Like, routines are a little bit different, and stimulation is a little bit different. So let's move to the next slide. So managing tasks and schedules and not multitasking is like an everyday kind of thing. One of the best things that I've learned about myself and, in turn, other people that have experienced trauma and other mental health issues is that predictability is everything. Like, knowing what to expect makes things so much easier, and all these things kind of play into each other. So you can see how learning what to expect and having things be predictable would be really hard right now because things are very uncertain. So that's going to kind of kick up-- it's really hard to have that as a coping strategy right now when things are so unpredictable. And then the changing conditions, constantly changing conditions are creating challenges for me and a lot of other people that have benefited from the predictability, the routine, the limited stimulations. OK so let's move on to the next one then. So the consequences of these changes means that many of us are experiencing a lot more stress. And sometimes the stress isn't so much because our lives have changed so much but because of the uncertainty. Or in other cases, there is no way to have that same routine. And so then it creates a level of stress that's really hard to describe to people because everything seems OK, but that routine that provided you comfort is no longer there. So it can be really stressful and disruptive. I've also noticed that, in my own experience and other people with disabilities, that it kind of creates chaos in our lives. And for me, it's mostly in my thoughts. It's very chaotic because it's kicked up a lot of the DID symptoms. And let me stop there for a second while we do an interpreter change. Awesome. OK, so for me, there's a lot of noise basically going on in my head right now because all my coping-- all my coping strategies are really challenged right now. And so because I've had, like, basically 30 years or so of doing this kind of management work to get through my days, I'm better able to manage things and kind of stabilize and center myself. But it really is one of the most difficult challenges that I've had in that period of time, and I imagine for other people as well. It challenges our ability to think, our ability to relax. It creates all kinds of fear and worry. And in some cases, the fear then kicks up that response in the brain that kicks in the fight, flight, or freeze. And then we're constantly heightened. So let's move to the next slide then. And on top of that is it's kicking up for a lot of people anxiety and panic. And it's leaving us feeling exhausted, unfocused, at times manic. A lot of people that I've been talking to-- I do a lot of peer support. So a lot of people that I've been talking to have been talking about being caught up in a loop of irritability, distrust, and tension. And it makes it hard to get up each day and get through our day. And then a lot of people who have a dissociative disorder like I have or other trauma disorders are noticing more heightened dissociation, meaning that they're distancing themselves from their daily experiences. They're pulling away and just going through the motions of their-- of whatever it is that they're doing and not tracking it. And that's an instinctive-- that's an instinctive response to being overwhelmed, that your brain just kind of kicks in and does that. So let's move to the next slide then. So there's a lot of things that you can do as advocates to help people who might be struggling in the way that I'm struggling. And again, a lot of the things that I'm talking about are things that I'm helping people, in terms of the people that I help, with with peer support and also that people close to me are helping me with. So the first thing is have a conversation with the person who you're working with. So have a conversation with the survivor who might be struggling right now, and ask them how you can help. So hear from them first. If they're caught in a place where it's really hard for them to articulate what it is that they need, then these are some ideas of how you can help. And these are things that you can ask them about and then get their input. So first thing is helping them and supporting them in regaining a new routine, because it's not going to be the same routine. A new routine is going to be really big. So by doing that, you want to have a conversation with them about what their routine looked like before, what their life is right now, and how you can create a routine for them now. It'll take them a little bit to be able to get that routine in place so that it provides comfort again. And then see what aspects of the previous routine can you build back in. So I'll give you an example. I get up each morning, and I feed our dogs. I let them go out first to pee. And then I feed them, and then I get myself a cup of coffee, and I go back to bed, and I check my emails. That's something that I can keep doing. And it's a really nice way to kind of start the day in a slow, centering way. So if someone has a routine that's like that, where they get up in the morning, they take a shower, or they get up in the morning and they get a cup of coffee, like anything early in the day that you can keep in place will be really helpful for setting their day in a kind of safe and stable manner. The other thing is to be patient with people and with survivors in particular as we settle into routine. It's going to be disruptive. We're going to be frustrated. We're going to withdraw at times. We're going to struggle. So be patient, and remind us to be patient with ourselves, that this is hard for everyone and that this is just what it looks like for you at this time. Help us as we figure out how to comply with new requirements. So the social distancing requirements, the wearing masks requirements, it can be a bit overwhelming when-- and then I live in Wisconsin where the state was asking us to stay home. But then the Supreme Court ruled that we don't have to stay home. So there's a lot of confusion by county by county and city by city what the requirements are. So helping us figure out how we comply with them and also figuring out whether they're possible for us. For some people, they can't wear a mask. Some people, it's really, really triggering to have something over your nose and mouth. And so coming up with strategies that may help them still get what they need at the same time as not violating some of the requirements that we have in our areas. Going to the grocery store is an incredibly challenging thing for me. And I've managed to do it really well over the past. It's been a challenge again, in part because there's new lanes-- one-way lanes and stuff that at the time at the grocery store can be a little overwhelming for me. So having those conversations about the specific aspects of what someone needs to do and how you can help and how the things-- how changes might have taken place. So for example, what I ended up doing because it was so stressful is in my small town of about 500 people, we have a grocery store that allows people to order online and then go, and they'll put the stuff in your car and then go home. And that's been really helpful for me. It's also a little bit inconvenient because if they don't have stuff, they want to substitute things that maybe you don't want or you just don't get some of the things that you feel like you need. But these are really helpful things to just kind of think about and walk through with someone and have a conversation with them. And then you want to do this kind of carefully too because it can be overwhelming to have too many details and try to figure out too much at a time. So do this slow in terms of what are the kinds of things they're worried about and how you might be able to help them plan for it. So let's move to the next slide. Another thing-- oh, yeah, so this is-- so help us plan and create predictability at a time of great uncertainty. So this has been a really huge issue for me. And if you've heard me on any other webinars, I've been talking about this the whole time, which is the health care issue. And that's why I'm really excited about Kelly's presentation. But first is, like-- so help us plan and create predictability around personal care, meaning things that we really need to get done. Like, OK, we need food. If we are able to work, how we're going to be able to do that. The basic necessities of life. So kind of place-- like, kind of parse this out. I, at times, need my partner, who is really amazing, to help me figure out how to focus some days and help me prioritize what my day might look like on days where I'm really struggling and then also a lot of times to just say it's OK that I'm struggling, and I don't have to be perfect. So those are some things that you might be able to do with someone who's struggling in this way. Around the health care issue, help people to plan. If they get sick right now, how are they going to address going to the hospital or going-- or contacting their doctor? And have them plan if they can contract the coronavirus and get COVID-19, how will they approach getting care for it? It's a really important conversation to have. And I developed a resource that the National Resource Center for Reaching Victims has on their website. And it's basically the process under which I developed a plan. Anyway, so I'll give you that. And it's very, very detailed that'll enable-- it'll give you some help in having this conversation with folks. In the beginning, it might be really, really stressful for someone to think about this. So give them some time to kind of just think about it. But having some predictability about how this will go is really helpful for folks. And then have a plan in place for quarantining if someone gets sick. So what will they do if they get sick or someone in their household gets sick? What kind of configuration do they have to be able to stay safe? It's a really important one. OK, so then let's move to the next slide. The other ways in which you can help folks is around some of the financial issues that are coming up for people. So we've had to apply for unemployment insurance in Wisconsin because my partner's business, it's the kind of business that you need to have people be able to gather in person to do. And I'm a lawyer, and I think I'm pretty smart. And the unemployment insurance forms and process is extremely confusing. So if you know someone who is a survivor who's having some challenges, you might want to walk them-- walk through that with them and help them think that through. Again, helping people focus to be able to work, helping them plan their work in chunks of time if they can and, again, getting food. Those are all really important ways that you can help someone at this point just kind of get through their day. And as people do this over and over and over again, they're creating a new routine. And again, these are conversations that would take time to have with someone. Don't do it all at once, and be open for them to come back to you. So let's move to the next one. OK, so one is remember we are super capable and functioning people. And usually, I have a slide here with Mr. Incredible from the animated film The Incredibles because we are really pretty amazing that we get through our lives on a daily basis and make incredible contributions to the world. So it's good-- it's easy, though, to forget that when you're struggling. And this kind of crisis, people that never struggle are struggling. So there's no shame in that. And in fact, it's really awesome if you can catch yourself early enough and center yourself and ask for help. I found that that's actually brought people a lot closer to me. I think they get a better sense of who I am as a person. We might do things differently than other people do, but we're still here, and we're still doing it. And that's really important. We're all going to do things a little bit differently. When I talk about DID at conferences with other people with DID, my process and my journey has been way different than a lot of other people, and they're all good. And then again, help and support us with that in mind, that we are super capable and functioning people, that we might do things differently, and we're still here doing it. So, OK, I think this might be my last slide, but I'm not sure. Do I have one more? Oh, here we go. So support us. Oh, yeah, so this is really important. So support us because it's really easy to get caught up in the fear and be worried. So there are a lot of things that I'm worried about right now that I cannot control. And so I try really hard to let that stuff go. I can't control who runs our governments. I can't control whether other people wear masks. I can't control other people's interpretation to what's going on, right? Those are all things that I'm worried about. But I can control whether I have a plan or not about how I move forward. I can control asking for help to do that. I can control trying to get groceries, those kind of basic things. So I try to focus on the things that I can and let go of the things that I can't. And that's an important thing to help people kind of maintain some stability in their life and limit some of the chaos and also some of the overstimulation. Support us in our planning over what we can control. And again, the health care piece is really big right now. And remind us that we don't have to be perfect. And remember that we're not going to be perfect. So I had this conversation with my partner today. This is kind of a hard day. And I'll just say for a lot of people that have experienced trauma, this place right now that we're in where some of the country is in place and not really supposed to be out and other parts of the country are out, there's a match for trauma in the past. And I've talked to quite a few people that are struggling with this. So this is the time where it's good to remember that we're not perfect, and we're not going to be perfect. And it's a good thing to help us be kind to ourselves when we're not. OK, so next slide. Oh, yeah. And this is another resource that the National Resource Center for Reaching Victims has on their website. Grounding techniques are really, really helpful. So what happens a lot of times is the fear or anxiety or anger builds up in someone, and then we might do this instinctive kind of dissociation. Or we might get triggered and have flashbacks or just kind of go away. And helping someone to come back to the present and be in their body is really helpful. And grounding techniques are real simple. It's helping someone by taking breaths in slowly to help ground their-- slow down their breathing and deepen their breathing helps with panic responses. Then helping people to sense themselves back in their body. So meaning like when someone-- let's say someone is sitting in a chair. And talking to them about what they can see or what they can feel is really important. So the things that they might be able to feel is parts of their body in the chair. So asking questions about, can they feel their hands on the arms of the chair? Can they feel their back against the back of a chair? Can they move their head from side to side? Those are things that can be helpful, the things that someone can see. And if it's a person that can't see, the things that they can hear that are going on around them. That brings them back into their surroundings. So that's a really good technique to use to help us stay grounded in times of high stress, fear, and anxiety. I've been doing this a lot for myself, and my partner has been helping me with it as well. OK, let's move to the next slide then. All right, so I hope that-- I kept thinking, I think that's the end of my slides. It is the end of my slides. So we're now going to listen to Kelly Israel. I hope that those tips for helping someone who might be struggling right now, I hope they're helpful. And then Kelly's going to talk to us about some of the policy work that she's been doing. So I'm going to turn this over to you now, Kelly. KELLY ISRAEL: Has the interpreter switch taken place? Got it. OK, thank you for the introduction there earlier. As stated earlier, my name is Kelly Israel, and I'm a policy analyst at the Autistic Self- Advocacy Network. Now I notice the discussion on me talked a lot about me but not a whole lot about ASAN. So I am going to explain it. ASAN or the Autistic Self-Advocacy Network is a 501(c)(3) nonprofit advocacy organization created by and for autistic people ourselves. That means that everybody at our organization, especially right now, is autistic themselves. And we are advocating for autistic people. In short, we are an all autistic disability rights organization advocating for the self-determination and civil rights of autistic people at the local, state, and national level. As you might expect, we have, like all other disability rights organizations, become deeply committed to ensuring that the toll the COVID-19 is taking on disabled lives is known and the rights of people with disabilities during this horrific pandemic are respected. So let's get right into it. Turn the slide. It is absolutely critical that people with disabilities, our caregivers, our friends, and advocates of all kinds be provided with accessible information COVID-19 and equally accessible resources on how to fight and-- fight for and advocate for our health rights during this pandemic. People with disabilities-- and whether we're called high-risk populations, the most vulnerable, whatever, that is referring to us-- we are disproportionately likely to get infected with COVID-19 and disproportionately likely to die from it. Like, I'm running ASAN's COVID-19 tracker right now, which you can find on our website. And long story short, even if people with disabilities and staff members get COVID-19 in equal numbers in the same setting, guess who's more likely to die from it? Us, people with disabilities. Many of us do get COVID-19 and have to be hospitalized are also losing access to critical medically necessary services and supports. And we're cut off from the support networks that help us understand the health care decisions we need to make. Many people with IDD need their supporters, their friends, and their family members present so that they can have critical decisions in health care settings explained to them. But we are being deprived of access to those supporters, access to connect to our communication needs, auxiliary aids, services, et cetera. Next slide. Nonetheless, as always, our needs during the pandemic are being neglected. One, there is very, very little cognitively and physically accessible information out there on what COVID-19 is, what to do to stop yourself from getting it, and how to fight for your rights. For the record, physically accessible means things like screen reader accessible for blind and visually-impaired people or closed captioning or transcripts for the deaf and hard of hearing. Cognitively accessible means that the average person with an intellectual disability or a person who doesn't speak English very well can probably read or understand what you've written or said. This usually means offering accompanying graphics and other visual aids, as well as creating a version of your text that's at a fourth or fifth grade reading level. Two, state and local advocates-- that's many of you on this call-- often lack critical information, tools, and resources that may be utilized to defend your clients and constituents, i.e. what to do when someone's denied access to a supporter at the hospital, what to tell their clients or other people they are supporting, how to stand up for the health rights of your clients and constituents, and the advocacy tools you can use to do that. But you know what? That information is out there. People with disabilities, lawyers, advocates, family members, caregivers, and concerned citizens have all been hard at work producing it. There are advocacy tools, resources, a legal knowledge base, and disability accessible resources that you can use to defend the people you support and maybe even yourself. So I'll be spending most of my presentation introducing you to some of the tools and resources out there that you may not have heard of. If you have a copy of the PowerPoint, you can click any hyperlink listed in there to get access to the resource immediately. Switch slide. OK, the first set of resources I'd like to talk about today is resources that explain the COVID-19 pandemic in plain language. People with intellectual and developmental disabilities-- for short, people with IDD like me and many others-- and other cognitive disabilities must understand what COVID-19 is, how it is transmitted, how to protect against it, and how to protect themselves. We can't just be left in the dark. Because if we don't have access to that kind of information, we're pretty likely to make a lot of mistakes, like underestimating the severity and importance of social distancing, fail to acquire basic personal protective equipment, fail to wash our hands and clean ourselves regularly and clean the house regularly. So we have to have access to plain language resources on COVID-19. So what's plain language? The short version is that plain language is a governmental and policy standard for simple writing. Simple writing helps people with cognitive disabilities understand what's going on. Most of the time, you really don't need to use big words or complicated conceptual concepts to understand what something is. We use big words out of habit instead. We're encouraged to use the full breadth of our vocabulary, and that makes it really hard for people with intellectual and developmental disabilities to understand what's going on. So the federal government, via the Plain Writing Act of 2010, created standards for plain language writing that the whole federal government has to adhere to. You could-- and frankly, we recommend you do-- also use a standard called Easy Read, which is an even simpler language style with accompanying pictures. So to give you an example of what Easy Read looks like, all of ASAN's major tool kits on its website are in Easy Read. So let's provide you with some existing plain language resources for people for intellectual and developmental disabilities on COVID-19. For example, as you can see on this slide, ASAN produced a plain language video on COVID-19 that you can access from the slide. It describes with accompanying pictures what COVID-19 is, how it's transmitted, and what you need to do to protect yourself in the simplest language possible, with visuals to help direct. Change slide. Green Mountain Self-Advocates and ASAN together produced a comprehensive guide to the coronavirus pandemic for self-advocates, which, again, you can access on-- it's on the accompanying slide. We often refer to people with IDD and people for intellectual disabilities and people with developmental disabilities-- people for mental health disabilities do this, too-- we often refer to ourselves as self-advocates, hence the name of the guide. The guide covers a diverse variety of topics, including what the coronavirus is and how to protect yourself from it in simple language. We're going to come back to this guide later in the presentation because there's also some other important stuff it covers. Change slide. So of course, people with cognitive disabilities and their advocates and caregivers aren't the only folks who are really concerned about the knowledge base of people of disabilities around COVID-19. In fact, a number of disability rights organizations have released instructive guides for the people they serve or their caregivers on COVID-19. As you can see-- oh, I'm sorry. Let me repeat a bit. In fact, a number of disability rights organizations have released instructive guides for the people they serve or their caregivers on COVID-19. As you can see, for example, there's a National Down Syndrome Society Q&A on COVID-19. And there's a wheelchair and assistive technology precautions resource on COVID-19 as well. And there's even the Spina Bifida Association's guide to COVID-19 and spina bifida. You can find a lot of these resources on the American Academy of Developmental Medicine and Dentistry is Resources page. That's the American Academy of Developmental Medicine and Dentistry. You can find them-- you can find the Resources page by going to the American Academy of Developmental Medicine and Dentistry's website by clicking the-- and by clicking the Coronavirus dropdown link and then clicking the Resources tab. Slide 6. So now I'm going to talk a little bit about some basic advocacy tips for discussing and advocating for the health care rights of people with disabilities during the COVID-19 pandemic, whether you yourself are a person with a disability or whether you're an advocate of some kind. One, your legal rights and those of your clients are not waived just because of COVID-19, not even if you or your client get COVID-19. Hospitals, whether public or private, are subject to Title II and Title III of the Americans with Disabilities Act. The Americans with Disabilities Act, as many of you probably know, is the nation's main bit of disability rights legislation. Title II prohibits discrimination against people of disabilities, including the withholding of medically necessary care on the basis of disability in state and local government-run hospitals and clinics. Now Title III does the same thing in hospitals or clinics operated by corporations and private companies, whenever those are open to the general public, which is-- let's face it-- all of them. And Section 504 of the Rehabilitation Act, which prohibits discrimination against people disabilities in a way that's pretty analogous to the ADA, applies to federally funded and run hospitals and clinics. In short, you or your clients have rights no matter where you go for care. Slide 7. The ACA and Section 504-- that's Section 504 of the Rehabilitation Act, as I said on the previous slide-- prohibit discrimination on the basis of disability in the provision of health care services. Now, this can mean a lot of different things. But several prominent disability rights attorneys have argued successfully that this prohibits hospital or state triage policies that discriminate on the basis of disability. Now you've probably heard about this issue somewhere before. But in short, hospital triage policies are like state rationing policies for health care. Before the disability rights movement and the health care advocacy movement got involved, there were state and hospital triage policies out there which straight up said that when deciding who gets care in an emergency, like the emergency we're having right now in the form of the COVID-19 pandemic, people with disabilities would be given lower priority. For example, Alabama's policy straight up used to say that people with significant intellectual disabilities and people with Alzheimer's disease would be unlikely candidates for ventilator support during rationing. Needless to say, that did not make many of us happy. So now there are several comprehensive lawsuits on this subject alone. Due to these lawsuits and due to the stringent efforts of advocates and the federal government, HHS recently put out a bulletin on the civil rights of people with disabilities during the COVID-19 pandemic, which specifically prohibits this kind of disability rationing. And it was in part put out thanks to the efforts of health care advocates like you and people of disabilities like you. So when in doubt about whether it's a good idea to press that disability rights apply during this pandemic, just remember that positive results can happen. Change slide. Oh, I'm sorry about not bringing up what HSS stand for-- stood for. I'm used to saying it reflexively. So the Americans with Disabilities Act and Section 504 of the Rehabilitation Act also mandate that people with disabilities must be given access to effective communication. So legally speaking, effective communication is, in fact, actually a legal standard under the Americans with Disabilities Act. It means that communicating with a person with a disability at the public entity or a place of public accommodation-- in other words, in the COVID-19 context, state-run hospitals and privately-run hospitals-- communication with people with disabilities who are receiving care from those locations has to be just as effective and proficient as communicating with a person without a disability. This also means that in most public spaces, that is, spaces covered by Titles II and III, people with disabilities have to be provided access to any auxiliary aids and services or modifications to policy and practice that they need in order to communicate. So under Title II specifically of the Americans with Disabilities Act, the one that applies to state-run hospitals and things run by the state and local government, Title II requires that priority be given to the person's preferred method of communication. So for example, if you are going into a state-run hospital or locally-run hospital and you ask for a sign language interpreter specifically and you're deaf, they have to give priority above all to getting you a sign language interpreter. Under Title III, the business or place of public accommodation at least has to seriously consider it. They're encouraged in the words of the law, not me, to give it primary consideration. So you should use Titles II and III to argue. You can and should argue that this means that under the Americans with Disabilities Act, people with disabilities or yourself who has a disability must be provided with proper sign language interpreters, argumentative and-- augmentative and alternative communication devices, so on. Lettered words, typing, typing, communication machines, as well as other-- as well as your communication aids in hospitals. Next slide. So the Administration for Community Living, or ACL, has released a list of resources that people with disabilities and health care advocates can utilize to define and defend the rights of people with disabilities. It's fairly comprehensive, fairly thorough in terms of what's out there right now. You can click the hyperlink and get a look. The American Psychological Association has a "How disabled Americans can cope with the COVID-19 crisis" page, which shares a lot of good resources and strategies for Americans with disabilities in terms of finding out what they need to do in order to manage themselves and their affairs during COVID-19. DREDF-- that's the Disability Rights Education and Defense Fund-- has released "Know Your Rights to Medical Care-- COVID-19," which also conveys a lot of the information I've been trying to share in this PowerPoint. Pausing. Has the switch happened? Awesome. So reasonable accommodations and supporters in hospitals, that's my next subject. People with disabilities, as I have stated, under the Americans with Disabilities Act and Section 504 have the right to the reasonable accommodations and reasonable modifications to policy and practice to receive the same quality of care in hospitals as people without disabilities. Now for some people with disabilities, that necessarily and also involves access to their personal assistants and supporters in hospitals. Because how were you going to get the same quality of care as people without disabilities if you don't even know what's happening around you? That's where supporters come in. People with intellectual and developmental disabilities often bring supporters with them to doctors, to medical visits of all kinds so that the person can explain to them what's happening, what the treatment plan is, et cetera. Nonetheless, personal care assistants and supporters have reportedly been denied access to their COVID-19 positive clients in hospitals, despite the person absolutely needing access to these individuals in order to either take care of their physical needs with respect to the personal care assistants or understand what's going on with respect to the supporters. A lot of disability rights organizations have been extremely concerned about this, including the Autistic Self-Advocacy Network. The following best practices-- advocacy steps, I'm going to call them for some reason-- and resources will assist you in helping you or your client obtain these kinds of services. So let's start with advocacy step one, convey information on you or your client or your constituent's needs in medical settings. So sometimes the only reason that the hospital is failing to provide a person with a disability with a supporter or personal care assistant is because the person with a disability has not laid out what their needs actually are and why these are medically necessary or necessary for ameliorating and managing their disability supports, services, and reasonable accommodations. So sometimes the disabled person just needs a clear cut way of stating that their supporters and reasonable accommodations are medically necessary services. So Green Mountain's Self-Advocate's Guide to the Coronavirus-- remember, I mentioned this guide earlier. I told you it'd be coming back-- contains a plain language medical information form which a person with a disability can fill out. The medical information form allows a person with a disability or their supporter to fill out the form and list what their needs are in a health care setting, what kind of care they don't want to receive, what medications they need to take, whether they need a supporter or family member to come with them, that sort of information. Stony Brook University also created a form that people with disabilities can fill out that describes their support needs in hospitals. And Stony Brook University's form, while less plain language accessible in my opinion, is customized by state. So you can download a Stony Brook form that corresponds with any state in the union where you happen to need supports in hospitals. And some states and state hospitals and state organizations have released their own resources, like the Illinois Council on Developmental Disabilities My Health Passport, which, in my opinion, is more accessible and is generally a high quality resource to be used for this purpose. Next slide. So advocacy step two is requesting a change in hospital policy. So sometimes the hospital is going to refuse you even if you ask very nicely and very clearly. Hospitals can be dicks. So if a request for reasonable accommodations does not work, people with disabilities and their advocates may need to request and justify a change in hospital policy. This means that they talk to a representative of the hospital directly and show them through policy and/or legal argument why their request should be granted. Green Mountain's Self-Advocate's Guide to the Coronavirus contains a template letter. And this template letter is a letter to either hospital staff or hospital directors to request a policy change in the hospital that allows them to bring their supporters or personal care assistants into the hospital or, I believe, simply get a reasonable accommodation. On the subject, it may also be useful to show the hospital or clinic the opinions of prominent provider and medical provider organizations on the subject. So the American Academy of Developmental Medicine and Dentistry put out a policy brief on the rationale for revising hospital no visitors policies for COVID-19 patients. When arguing that you or your client should get access to supporters in hospitals, utilizing their policy brief as evidence that, hey, the medical community is behind having a reasonable modification to this policy for people with certain disabilities might be useful. Next slide. Advocacy step three, collaborate with disability rights organizations. This should arguably be pursued at the same time as step two, but I liked the structure here. So sometimes asking them and providing support for your point that a person with a disability should be allowed access to a supporter in a hospital is also not going to work. In that case, you should probably work with people who are coordinating around this very issue. ASAN-- that is the Autistic Self- Advocacy Network, the organization I am a part of-- and many other organizations that are part of a multiple organization collaborative known as the Consortium for Citizens with Disabilities-- let me actually type that out so you can look them up-- have released letters to state governors and hospital administrators detailing the legal and public policy rationale for allowing reasonable modifications to hospital no visitors policies. So if I were you, if your own efforts have been in vain, reach out to these organizations to request advice on what to do next and use their policy briefs to make legal arguments that access to reasonable accommodations, auxiliary aids and services, and reasonable modifications to hospital policy is mandatory under federal disability rights law. You might also-- if you're advocating for a specific person or are a person with a disability yourself, you may want to reach out to your state's protection and advocacy organization. Every single state has a protection and advocacy organization. It helps to support and provide legal advice and-- legal advice and advocacy advice to people with disabilities who are running into a disability-related policy or legal problem. The best way to contact the P&As is to contact the National Disability Rights Network, or NDRN. I'm going to type that as well. Under the Member Agencies tab on the National Disability Rights Network's website, you can find a list of P&As, one for every state, and their contact information. It's a dropdown menu, and-- it's a dropdown menu where you have to click the state-- the state's name in question. You may also be able to reach out to a legal aid organization in your state. These are collectives of disability rights attorneys and lawyers and sometimes paralegals who are providing pro bono legal services to people with disabilities in that state. There's usually a legal aid organization in every state, too. Next slide. So access to government benefits during the COVID-19 pandemic. Many people with disabilities and their caregivers and their supporters have been concerned that they will be unable to access government-funded long-term services and supports during the COVID-19 pandemic. To clarify, long-term services and supports, or LTSS, are services that are usually Medicaid or Medicare funded that are provided to people with disabilities over a long period of time. They usually involve-- like I said, they're usually government funded, and they usually involved personal care assistants or other individuals helping people with disabilities with daily tasks in their lives, whether that's job searching or cleaning their house or managing their medications. Lots and lots and lots of people with disabilities who have trouble with daily living tasks use LTSS and actually rely on them in order to remain in the community. Other people are worried that they will not receive their COVID-19 stimulus checks due to the receipt of Social Security. The Green Mountain self-advocate's plain language resource has advice on both what to do concerning long-term services and supports, although I will admit that the disability advocacy community is still trying to figure out how to advocate around these, what to do concerning how to get your stimulus checks if you are on Social Security, and how to get unemployment benefits if you have recently become unemployed. When advocating around this issue, the Center for Public Representation-- I'll repeat that. The Center for Public Representation, or CPAR, has a COVID-19 page. And that page contains information on legislation, public policy, CPAR's efforts to oppose waivers of Medicaid-funded services like a lot of long-term services and supports-- that's right, the federal government and the state governments are attempting to waive peoples' rights to long-term services and supports while the pandemic is going on-- and ways to get involved with CPAR and other disability rights advocacy organizations efforts. Flip slide. So just to close out my presentation, always remember, during the worst of times, people have disabilities, all of us, we have rights, and these rights are worth fighting for. Thank you, everyone. ASHLEY BROMPTON: Thank you so much, Kelly. This is Ashley again. I am putting up your email addresses right now. I know that there were some requests for follow-up and some requests for additional information. So these are the best ways to contact both Olga and Kelly. I know that this was a lot of information today. There was a lot of really concrete information. But it was a lot of information. And so please know that as you're going through the PowerPoint, if anything else comes up for you, you can contact either of our presenters. You can also email us at cbs@vera.org, and we would be more than happy to help you as well in weeding through some of this information or finding which resources might be best for you. I'm looking at some questions right now. And we actually had several questions about what to do for folks specifically who use lip reading as a way of communicating, which we know is a small portion of people. But there are still some people who really rely on lip reading. And I don't know if either you have any ideas around masks and what that might mean for people who use lip reading as a way to communicate. OLGA TRUJILLO: Yeah, Ashley, the thing about masks is-- and I'll just say this as well for people who-- there are some people who can't put a mask on obviously because they're not physically able to put a mask on. And then there's people that get triggered by masks who may end up having kind of panic symptoms. And then there's people who might not be able to communicate because of the mask, like people who are deaf who might not be able to communicate, right? And then lip reading. So the masks are-- we're asking people to wear masks-- communities are asking people to wear masks to prevent the possible spread of the virus. But it's not-- so what I would recommend is if you cannot wear a, mask then do not wear a mask. But then limit when you are out where you're going. Keep an eye on where you're going. And then I would have-- and this is not a requirement at all. But right now, things are kind of tense out there. I would have something in writing. Like, I created a card for people that have DID to give to a health professional, for example, that says that they have DID, who their clinician is, who their support person is should they need that health person to get-- for that person to get some support from them. Like, please call them if, you know. And I think you could create a card that says you are unable to wear a mask right now, and medically-- or something like that so that if you're challenged, that you can provide information about the fact that you're unable to wear a mask right now. You don't necessarily have to say why you're unable to wear a mask. But I like to go back to the law and say, I have a disability and cannot wear a mask right now. But I would-- because although there's kind of-- it really varies across the country as to whether it's a requirement or not. Not everyone is wearing masks. Like, if 60% of the population wore masks, which is not what's happening in my area, then we're going to curtail the spread of the virus. But if you can't communicate or you're going to have panic attacks or any of those things by wearing a mask, then you shouldn't wear a mask and then have something to notify people should you be challenged by it. That would be my recommendation. And that's me living in a town of 500 people where when I go to the grocery store, I'm one of four people wearing a mask, except for all the employees. ASHLEY BROMPTON: And, Olga, this is Ashley. While you were talking and providing that great input, we had a couple of participants share something that they learned on an earlier session that we had that people are developing clear masks that sort of facilitate the ability to use lip reading. And so that's an option. But people are-- there's a little bit of chat in the box about how it is harder to come by. Those masks are not easy to come by. They're more expensive they're more limited. So just a lot a lot going on there to unpack. I do want to open it up for the audience. Well, I know Olga has something to add. But while she's speaking, if anyone has any other questions, please feel free to enter them in the Q&A pod so that we can address them. OLGA TRUJILLO: There's a little bit of issue with the clear masks, meaning what they're made out of, because some people are having trouble breathing in them. So just be mindful of that. Breathing is a good thing. ASHLEY BROMPTON: Thank you, Olga. That seems like an important thing to note about those masks. I'm just looking to see if there are any other questions. While we're waiting for any other questions, let's do a final interpreter switch. I know we're almost done. But just in case any other questions come up while we're waiting for those questions, we'll do another switch OLGA TRUJILLO: I wanted-- if it's OK, I wanted to jump in for a second. The information that you provided, Kelly, was awesome. KELLY ISRAEL: Oh, thank you. OLGA TRUJILLO: Yeah, and I was curious-- sorry, Ashley. I hope it's OK that I'm not-- I'm kind of-- I was curious. So I live in a really small community, as I've mentioned a few times. KELLY ISRAEL: Yeah. OLGA TRUJILLO: When I first moved here-- like, I grew up in DC and worked in the federal government and all that stuff. So when I first moved here, I, like, was my DC lawyer self. And I realized that I was ruffling a lot of feathers. And so my approach with a hospital in my area is calling them and asking them what their policies are around COVID-19 because I was trying to figure out a plan for myself, because I'm a person that needs a support person at the hospital, and then asking them if they knew whether Wisconsin had a policy or not about that and what exceptions were there under the Americans with Disabilities Act and stuff like that. So they didn't know anything about any of that because they're overwhelmed and not the most sophisticated hospital system in the world. But I started that way to not ruffle too many feathers in case-- because they remember who you are. Like, you can go places here, and people are like, oh, that's all Olga, that kind of thing. So I was curious, like, if you all are coming across like some smaller rural communities being a little more difficult to work with or easier to work with or any of that. KELLY ISRAEL: I mean, truth be told, because I am-- because I am not of the two attorneys the one who has been collaborating on a lot of the disability-related complaints that are being sent around, I'm not entirely sure how rural communities are being affected and whether they're a little bit more difficult to get with the program. But I honestly suspect that. Because, like, just speaking on a completely different subject, in small communities or small states, it is just surprisingly difficult to get people to realize that rules from the federal government apply to them. There is such a thing as person-centered planning, and people are supposed to have it. Like, I queried a provider once in-- I won't explain the context for legal reasons-- who didn't even know what person-centered planning was, let alone providing conflict-free case management. And I think that the same kind of issue is going to come up during the COVID-19 pandemic. And I'll be damned on how to deal with it, except stating that under the law, you are required to provide auxiliary aids and services and reasonable accommodations. OLGA TRUJILLO: And I think that-- so what I was-- what I do in my community is I call and inquire first and try to be really friendly and helpful. And then if there isn't kind of a willingness to look, I do the more heavy-handed the law says this, and you need to do that. KELLY ISRAEL: Yeah, it's why the very first advocacy step isn't breathe down their necks and destroy them in my presentation. It's maybe they just need to know what you actually need in order to obtain care. Maybe they just need to realize that access to a supporter who can tell you what's going on is actually, in effect, part of your care, and you can make that argument. OLGA TRUJILLO: Right. ASHLEY BROMPTON: Great. I think-- KELLY ISRAEL: It is an argument that you need to make, to be clear. Some medical providers are probably going-- are probably going to think of supporters as not being medically necessary for your care just because they're not really medical. But if they're necessary for you to make decisions about your care, I think you can actually make that argument. You can also make the argument that they're a necessary reasonable modification to a no visitors policy or reasonable accommodation. I wish I could give you a more clear cut answer on that. But I'm a lawyer. And so we try every angle we can to get our clients what they need. ASHLEY BROMPTON: This is Ashley. Thank you so much for that. I think this is one of those rare days in our presentations where all of the panelists are lawyers. So there is a lot of it depends answers that happen. KELLY ISRAEL: Yeah, it depends on what you think will work to get the hospital to let the supporter in. ASHLEY BROMPTON: Exactly. KELLY ISRAEL: I can give you a couple of possible options you can use, but I can't say for sure which one of them will work. ASHLEY BROMPTON: Yeah, and this is actually-- again, I think that that just really puts a fine point on this idea of we really need to meet people where they're at, not only the survivors and people with disabilities that we're working with, but also the staff members at hospitals and other medical facilities and other service providers, recognizing that systems are stretched really thin right now. And so I think just having a recognition of that and trying different avenues and getting creative in your advocacy is a great point to make. KELLY ISRAEL: Yeah, I mean-- yeah, I would be inclined to express it as a reasonable accommodation or reasonable modification to policy on my end. ASHLEY BROMPTON: Right, absolutely. And with that, we are going to wrap up. It is just about 3:30, and I want to make sure that we have time for the closing. I cannot thank you both enough for being on today. We've got-- I don't know if you all were looking at the chat, but we got tons of thank yous. People are e-mailing me already with positive feedback. So we really appreciate you spending some time with us today. It's always a great day when we can get really concrete strategies and concrete resources and have some tools in our toolbox to work with. So we appreciate both of you so much for being here. For the audience, we do ask that you complete a brief survey. The link is in the PowerPoint. But when I end this session, the survey will automatically pop up. So if you don't mind just completing that survey, it really helps us learn about what you liked and didn't like, what we can improve upon for the future, particularly given that this was our very first webinar on Zoom, and we want to make sure that we continue to meet your needs throughout the webinars that we host moving forward. As a reminder, the recording of this webinar, all of the PowerPoint materials, and the transcript will all be posted on our End Abuse of People with Disabilities website. We do-- it's going to take a little bit longer than it did when we used to use Adobe Connect just because we need to do some work on the back end to get the video up on the website. So for those of you who are used to seeing it within 24 hours, I would say look at more about a week probably before the recording is up. In the meantime, if you would like to access the PowerPoint or you need a record of attendance, the link that was in the chat today will take you to those documents. The link will also be in the automated follow-up email that you get from Zoom. So make sure you actually look at that email. It might go to your spam. So make sure you're looking for it if you're looking for that link. If you cannot find that link, feel free to email us directly at cbs@vera.org, and we'd be happy to help you out. Thank you all so much for attending today and spending some time with us. We really appreciate it, and have a great day, everyone.