Judy Mark  0:05  
Welcome, everyone. We are about to get started. We're going to wait one minute to allow people to join. For those of you who need Spanish translation, we are going to be putting the phone number for you to receive your translation, to get the translated Spanish translation, through a backline. Lorna, I'm going to unmute you. If you could tell folks how to get on the back line. It's also located in the chat. Lorna, are you there?

I'm not hearing her. Sorry everybody, but if you are online...Oh, there she is. Great. Okay, go ahead Lorna

Lorna Silva  1:01  
[Lorna repeats Judy's previous message in Spanish] That's it.

Judy Mark  2:00  
Thank you very much. Welcome everybody. This is our fourth webinar. As with the previous webinars, we will be recording this, so you can share the link with others. You can find all information about all the webinars we've had as well as the resources we've been able to gather for the disability community at our Disability Voices United Coronavirus Resource website, which is disabilityvoicesunited.org/cv, like for Coronavirus. We will also be placing this information in the chat and people can ask questions in the chat about their connection. Maybe if they're having problems using Zoom. That's really what the chat is for. If you have questions that you would like to pose to our speakers or our presenters today, please try to do that through the q&a section, which you would find by scrolling down to the bottom of your screen. It's much easier for us to answer the questions in q&a, so that we can sort of monitor whether they've been asked. It also gives us the ability to have any of our presenters answering questions. So please try to use the chat for just kind of making comments about the use of the zoom webinar functions. Okay, so let's get started. My name is Judy Mark. I'm the president of Disability Voices United. I'm also a parent of a 23 year old son with autism. And I wanted to start by giving some personal experiences that we've had this week, which have been extremely stressful. But I'm hoping that we've learned something from it and that maybe I can share it with everyone. Unfortunately, one of my son's two care providers tested positive for COVID-19 last Sunday. And obviously that put us in a tailspin. We were with this caregiver whom we love very much. We were with her 10 hours before she developed her first symptom, which according to healthcare professionals, means that we were clearly exposed. And really learned...I have a lot of lessons that I'm going to try to share in basically one or two minutes. Although I plan on having a webinar in the next few weeks, where we actually talk with families who've been personally affected by COVID, either in their own home or with their family member. So the thing that I can tell you is that it is actually not that easy to get a test. Even though President Trump says anybody who wants to test can get a test, it's actually not really true. And then when you can get a test, it's actually not that easy to get the results quickly, which of course, is incredibly important. Let me actually go to the tail end of the story first so that nobody is freaking out. We've all got tested in our family, my son's other care provider got tested, and all of the test results came back negative. So we are all healthy and we are all safe. Our care provider is ill with COVID-19. She is very young and so she's very healthy and is having a mild case of it. And we...all of us expect her to fully recover over the next couple of weeks, although she has been in self-isolation and in bed for the last nine days. So it has actually laid her up for nine days even though she's quite young. So the lessons learned is that it getting tested and getting those results rather quickly is really important. Number one. Number two, we were not prepared with protective equipment in our home. Immediately when we were trying to get started protecting ourselves, we immediately started wearing the masks that...Even within our home, we had to self isolate from each other. I have an underlying health condition, so I had to isolate from other family members, which you could imagine is incredibly hard. And we were lucky enough to have a space in our home where I could do that, but we know not everybody does. You need to think about that in advance in case this happens to you. Where would you go if you need to self isolate? Um, I can tell you that in our personal experience, we reached out to our regional center to get some of that personal protective equipment and were turned down initially to get provided any of that equipment, which is extremely frustrating on our part. But we were able to move forward by having others step in, such as my son's day program and the Department of Developmental Services, who have really great advisors there who can really help walk us through what we needed to do to stay safe. And I thank them deeply from the bottom of my heart actually. So, you know, you need to have your circle of support out there right away so that you know what you're doing before it gets started. And before you are actually facing this kind of crisis. The one thing that I can say that we're really proud of is that we have been able to show that hand washing works, keeping your counters clean and your doorknobs clean really works. And taking all these protective measures, because we are considered having been definitely exposed and the fact that no one in our household tested positive shows that all of those proactive measures really works. And we are religious about washing our hands constantly, and being on top of our son to wash his hands well. So just wanted to give that update. And you know, we'll talk about it more in the future. We feel we dodged a bullet. We're Jewish, and we feel that the plague passed over our house on the first night of Passover. And so we are, you know, really happy that we can report good news. So I also wanted to report to everybody a survey that we've been doing with the community about how they are experiencing this crisis and the shutdown. And we've asked a number of questions, we want to encourage people to fill out the survey because we're going to continue to keep it open so that we can get more and more results. But I wanted to share at least a few preliminary results. So especially within the context of what we're going to be discussing today, around people's rights to services, to education, to supports during this time. So I am going to attempt to share my screen and show you a few slides that we can go through. Okay. I can see Tauna very easily. Tauna or Andy, can you shake your head if you can see the slides well? Okay, good. Thank you. So, these are the results as of today, the surveys been out for about a week. What kinds of disabilities did responders have? Pretty much the variation of disabilities that exists in the world, from Autism Spectrum Disorder, cerebral palsy, all the various developmental disabilities. We had a fair number of people blind, who identified with blind or low vision, deaf or hard of hearing, with physical disabilities, mental health disabilities. We had a number of people with epilepsy and chronic illnesses.

We have some specific questions for regional center clients because the space that DVU works in primarily is in the in the area of people with developmental disabilities. A high percentage of our respondents were regional center clients or their family members. And we saw some concerning data. We hope that this has changed. But 47% of the survey respondents have not yet been contacted by their service coordinator to ask how they're doing, which is something that concerns us because we had heard a commitment from the Association of Regional Centers early on that that was what was expected. That service coordinators were going to call through all of their clients to ensure that nobody was falling through the cracks. So we're going to certainly share this information with the regional center agencies. There was a small, there was a small percentage, I would say less than 30% so far who asked for more services. But of those who asked for for more services during this time, 28% were denied. And the reasons were concerning, mostly because the staff of the regional centers were out and not returning their phone calls or getting no response. Their coordinators, the service coordinator's sick. They were told you already get enough hours or you're already receiving some services. And so, you know, we're hoping to bring that to the attention of Department of Developmental Services as well. Okay, there we go. Hold on, did I, okay, perfect. For those adults who are in day programs who are regional center clients. Almost all of them told us that their day programs had closed because day programs are historically congregate settings. And so if you're in sort of this group setting, the programs are going to be closed. But of those that were closed, 56% of those respondents said that they're not getting any services whatsoever. And the reasons are that the day programs are closed, and they can provide no services or the respondents didn't understand that they can ask for some services. And that if may they've been offered somebody to come into their home and they felt uncomfortable with that, because they didn't want to be exposed. We wanted to let you know because this is about people's rights, that day programs are allowed to be billing for any absences right now and are not really losing money, at least currently, under the COVID crisis. And so, if you are a person, if you're a family member or you're an individual receiving services through a day program, you should be asking for these services to be provided. You can have them done remotely, you can have them done in your home. There are lots of things day programs can do for you besides being in the home. They can help you with your grocery shopping, or they can do a physically distance walk in the community. They can be working on your health passport or other kinds of important documents, helping you to create a safety plan. So lots of things they can be doing for you. They're getting paid to work for you. So let's ask them to do that. For students with disabilities, what we found. A significant number of our respondents were students with disabilities or family members of students. 52% of these students are not receiving any educational services at all. That was very concerning to us. Either the Special Ed Department said they're not going to provide them, the services were cancelled without replacement, they're not yet being provided online services, the student has no access to a computer, no training for devices. The Zoom meetings are totally ineffective for non-speaking students who struggle to type. So we're hearing these concerns. Next week on Wednesday morning at 9am, we're going to be doing another webinar completely about special education. And so we'll be getting into those issues a lot more deeply. There are a lot of issues with technology and communication needs. 19% of the respondents said they have no access to technology and in order to access online services and education. So I mean that's a pretty significant percentage. So to say we're putting everybody online and yet if you have no access to technology, that leaves out, you know about a fifth of the of the people who responded to us. For those who use AAC or augmentative alternative communication, about a quarter of them can't access their communication supports. Many of them because they have no access their communication partners which are often in the school setting, or they have broken community communication devices, and they haven't had them replaced.

There was a lot of clear of problems that families were facing because of the crisis. 28% overall and 78% of Spanish speakers report that they are worried about not having enough money to pay rent as a result of the crisis. 26% overall worry about not having enough money to pay for food with 88% of Spanish speakers reporting that. We also saw that 38% of survey respondents are experiencing mental health issues as a result of the isolation or as a result of having to stay home. And those include...we asked them what that meant to them, and that includes increased existing issues such as anxiety, depression, and obsessive compulsive disorder. Social isolation obviously increases stress and upsets people, and it keeps them away from their support staff. People are having difficulty understanding why their routines have changed and when they can return to them. I think we've heard a lot from people, including our last week's webinar, that not having an end date to all of this has been very stressful for a lot of people with disabilities. We've seen reports of discrimination. 7%, which isn't a lot, but any I think are problematic, are reporting that they've seen experienced discrimination based on the race. These were primarily Asian Americans who report that when they leave their home that they've been called names or that they've experienced some kind of nonverbal cues of racial discrimination. 7% of respondents report that they've experienced discrimination based on their disability. Many of them are saying it's in health care, but some also report in education that they feel that the education is not making things accessible to them. Finally, they have concerns about health care. 35% of respondents don't know what they'll do if someone in their household gets Coronavirus. They have no plan at all. 68% of respondents are concerned that their family member would not receive appropriate health care if they were infected. And particularly if they landed in the hospital, and that the big concern comes when the family members cannot stay with their loved ones who may be needing assistance. We've heard that not only if they get Coronavirus, but if they have another need to go into the hospital, we're hearing that hospitals are not allowing family members to stay with their loved ones. And if this is their only way to communicate, they're concerned about accessing ASL interpretation services, and fear of medical discrimination, and not receiving life saving care during the pandemic.

All right, I'm going to stop sharing the screen. I'm going to look just quickly to see if I can answer. Um, somebody was asking to go back to the 88% of Spanish speakers report that they're worried that they cannot receive, they will not be able to pay for food during this time. So that just means that we all need to step up and provide them with the availability of food banks. And that's another thing we really are calling on regional centers to be able to do. To be able to do that research and service coordinators to be able to provide that local information of where food banks exist within those geographic areas that they serve. So I have to admit that none of that surprised us and it certainly not going to surprise these amazing presenters that we have today who are in the trenches representing these commmunities. And so I'd first like to introduce our first speaker. His name is Andy Imparato, and he's the executive director of Disability Rights California. And he's going to sort of set the tone for where we're going today. Go ahead Andy.

Andy Imparato  19:13  
Thank you. Can you hear me okay, Judy? 

Judy Mark  19:15  
We sure can. 

Andy Imparato  19:16  
Well, first, let me just say you set the tone for us. And I think your survey results are not surprising, but they are sobering. Especially the information about people being afraid that they're not going to be able to have food for their family. We're certainly seeing that across the state and across the country right now. At Disability Rights California, one thing I want to be clear is we are open for business during this crisis. All of our employees including Zeenat and I who are on this call today, are working from home. We recognize that our advocacy is as important as ever during this crisis. We have a lot of good information, as does Judy, on our website, which is disabilityrightsca.org. And we have the ability to do intake over the website and over an 800 number statewide. And I'll put all this in the chat, but it's 800-776-5746. And we are prioritizing, you can imagine, the vast majority of the intake that we are getting now is COVID-19 related. And and we are prioritizing responding and trying to help people in whatever ways we can. Even if they're not looking for legal representation. Judy asked me to talk briefly about some of the things that we're hearing and I want to touch on maybe some things that Judy didn't bring up in the response to her survey. A big concern is what's happening to people with disabilities in any kind of a group setting. So if you're in a state hospital, if you're in a developmental center, if you're in a jail, if you're in a detention center. You know, you are at greater risk, and the shortages of protective equipment, and the ability of these these places to screen their own employees, and try to protect the folks in the population is a serious concern. And you kind of add to that the state, in an effort to protect people in a lot of these settings, is preventing people from being discharged during this crisis, which prolongs the fact that they're at this greater risk. So this is a serious concern on multiple fronts. And, you know, I think Judy's respondents are mostly people living with their families. And I just think it's important to recognize there's there's other populations in the state who are at very high risk who are not able to live with their families. And those are groups that that we at Disability Rights California, are concerned about and doing advocacy around. Judy touched on this, but there's a lot of issues with the direct support workforce. It feels like this crisis is shining a spotlight on problems that are only worse during the crisis. So the fact that we don't have an adequate direct support workforce, and we don't pay them what they deserve. And we don't pay backup and don't have backup systems that work well in an emergency. All of that is very evident across the state right now as families struggle. What happens when your direct support worker gets sick, as Judy described? What happens when they don't feel safe to show up for work, and aren't showing up for work, and kind of where are the backups that that can be accessed readily by families across the state? There's also an issue around shopping for food and basic necessities. There's a lot of policies, from grocery stores across the state to have special hours for seniors and for people with disabilities or people who are immunocompromised. When caregivers try to take advantage of those special hours because it's safer for them to do the shopping than it is for the people they're taking care of. Some of them are getting stopped by the grocery stores and questioned. And we don't have a system yet across the state for caregivers to be identified and be able to take advantage of those hours. So we've been advocating at Disability Rights California that caregivers be explicitly included in the special shopping hours. There's also, you know, Judy talked about the fear of access to COVID-19 related health care, but there's also the fear of access to every other kind of healthcare during this crisis. You know, people that have chronic health conditions need to be able to get access to their medications, access to their treating professionals, and in a crisis like this, some of that capacity gets taken up by the response to COVID-19. And these these issues, I think, are going to get bigger as this crisis continues, in terms of just general access to health care.

There's also, you know, just the issue of families in crisis dealing with non responsive bureaucracies. And to the extent that there were underlying bureaucracies that were not particularly accountable are responsible for this crisis. The crisis creates an excuse for not responding to people. And this is the last time that we need people to be offering excuses. We need to get creative, we need to innovate solutions. And this is something that I know, Disability Rights California really wants to work closely with Judy and other organizations across the state to document what's happening. And that's why this survey that Judy did is so important. We need to document what's happening. And we need to use that to try to make these these bureaucracies more accountable, not just during the crisis, but after it's over. Judy mentioned this, there are serious concerns about medical rationing. Disability Rights California pushed hard for the governor to issue a policy on that. And I know another speaker is going to talk about that later. But this is something that we're very concerned about across the Protection and Advocacy Network, not just in California. And it's something that we want to hear about if it's happening on the ground in hospitals. As Judy mentioned, serious concerns about children not getting appropriate education in distance settings and serious concerns about the digital divide. And what that does to people having access to employment, education, telehealth, you name it. The underlying digital divide is creating a much more serious barrier for people to access a variety of services during this crisis. We're hearing confusion about who gets stimulus checks and how the stimulus checks are going to interact with disability benefit receipt. And we've got some information on about that on our website, but I know we're getting a lot of intake around those issues. There's concerns about not enough protective equipment for families and direct support workers. There's concerns still about not enough COVID-19 testing available for people who have been exposed or think they've been exposed. There's a concern about just aging caregivers, and what happens if one of them gets sick, and just the kind of the resilience of families that are at risk of having the caregiver not be able to provide the care because of COVID-19. And then there's concerns with immigrants and other folks kind of on the margins of our society, who are afraid to show up and get a computer for their kid to be able to use to access education. Or afraid to access the various relief programs that are out there. So that's, that's kind of off, you know, at the very high level, some of the issues that we're seeing at Disability Rights California. It's kind of amazing to think about how quickly this came on us. And we're trying to think a lot about the long term impact of the economic downturn that we're seeing in this country, what it's going to do for revenues for the state of California, what that's going to mean for budgets for the services that people with disabilities rely on for support. So we feel like there's there's a need to both kind of respond to the immediate crisis, but also prepare for a long term battle to protect the civil rights and basic health and dignity of people with disabilities across the state of California. So Judy, I'm gonna turn it back to you. But I just want to thank you for your personal leadership. And you have a long term relationship with Disability Rights California. I'm new, but I'm very grateful to have partners like you on the ground.

Judy Mark  27:51  
Thank you, Andy, and we are thrilled to have you in California now. Your timing is kind of perfect. So thank you, Andy. I'm just going to look to see if any questions came directly to you. And there is a question. I'm not sure if you've heard anything about this. The media is reporting huge gaps in access that have impacted African Americans. That has equated to disproportionate number of deaths in this community. Do you have any statistics on how this has impacted underserved groups? I'm not sure that you have statistics, we're not the ones keeping statistics of people who test positive, but I don't know if you've heard any kind of differences in racial disparities.

Andy Imparato  28:36  
I mean, I think you know, Judy, there's an underlying problem with disparities in services that families get from regional centers that's been well documented. There's also a lot of national attention to the fact that African Americans especially are dying at higher rates when they're exposed to this virus. So yes, I mean, this is stuff that we're paying attention to a Disability Rights California. There's good reason to assume that both the increased risk and the underlying disparities in who gets services are creating a serious problem for the African American community in California. And it's something that, you know, we want to address. There was a public health leader who's focused on disparities in Los Angeles, who was interviewed on NPR about this this morning. So it's definitely an issue that's getting a lot of attention in the African American community. And I think there's an opportunity at Disability Rights California and the other groups that are represented on this call, to do targeted outreach to make sure that those communities are getting the right kind of advocacy and the right kind of information to help them advocate successfully for the services that they need in this crisis.

Judy Mark  29:47  
Thank you. So we also got an additional question about people who are undocumented, and I know that you did mention that in yours. But I think as we go through all the other speakers, if you have information on how the issues that you work on are affecting people who are undocumented, you know. you could mention that as well,

Andy Imparato  30:07  
Judy, just one thing I want to quickly say on that. Disability Rights California is funded to advocate on behalf of people with disabilities in California, including people who are not documented. So I just want to be clear in case people are worried about eligibility for services. We are available and interested in serving immigrant populations, including folks who are not documented.

Judy Mark  30:34  
Great, thank you so much. And I just want to also mention that Kelly Coulter Reyes has joined us, he's from DVU. And also asking my friends who are texting me who are on this webinar, stop, as I do every single time. And so Kelly is going to be monitoring the q&a and the chat. For those of you who are Spanish speaking if you would like to ask a question and you're monolingual Spanish, feel free to write the question in Spanish in the chat or in the q&a. And Kelly will go ahead and translate that and provide that to the speakers. We're going to move on to our next presenter. She is Dr. Alicia Bazzano, who's the Chief Medical Officer of Special Olympics International. She has a long history here in California having been a physician for people with developmental disabilities and the founder of the achievable clinic for many, many years. And actually is one of the founders of Disability Voices United. So we love her very much. But she is now a bigwig in Washington DC at Special Olympics International, and we are really honored that she could spend a little time with us to talk about what she's been hearing, sort of both nationally, internationally and how people are accessing health care. Thank you Alicia. Oh hold on unmute. You have to unmute yourself, Alicia.

Alicia Bazzano  32:01  
Yeah, yeah. Right. Perfect. Thank you. Sorry about that, Judy, thank you very much. I absolutely hold DVU always in my heart. And I'm so lucky that I was able to be there at the start and see what an amazing organization you created. And all of this whole team there and all of the supporters around the states and around the country, actually, who are cheering you on and participating. So I'm just incredibly grateful that you even gave me the opportunity to be able to speak. And I do want to give a bigger perspective that perhaps...I definitely want to focus on what we have heard from people with intellectual disabilities, and try to represent that. And also to put it in context of what we know about health, the health of people with intellectual and developmental disabilities. And we know that's long standing. So what we're seeing now is very much that people with intellectual developmental disabilities are vulnerable. They're one of the most vulnerable populations to COVID and the effects of COVID. And we know that not only is this because of any certain conditions, but primarily it's because of lack of access to healthcare. So a lot of the echoes of what Andy was saying, this really represents a long term substandard quality of care and substandard access to care for people with intellectual disabilities, which has already affected length of life with issues, such as preventable deaths. Now we know that in the US one of the top causes of preventable deaths is sepsis. It certainly is pneumonia, aspiration pneumonia, both of those are actually obviously going to be exacerbated in COVID. We know that getting that access to care for a lot of other conditions that are associated with COVID and worsen COVID, like obesity, like heart disease, like lung disease, and like diabetes. Those are all also more prevalent in people with intellectual and developmental disabilities. And they don't get the care. We aren't able to access as families care and for various reasons, and we aren't able to access the supports that actually make our lifestyles healthier, to be able to even support our own health and the health of our loved ones. So we are hearing stories. We're hearing very similar to what was in that survey. I'm sure many of you saw in the New York news that there was a group home in which there were a number of people in the about 30s. About 35, 39 people who were infected in one setting, including eight care providers, and direct service providers. And all of them were hospitalized, were actually, they actually had difficulty separating and doing some of the things that we know are going to prevent COVID. And so, and in addition to all of that, we also have some particular vulnerabilities in particular diagnoses. So, for example, some people with Down syndrome might have more low tone in the airway. Some people with cerebral palsy might have low muscle tone or sometimes that can result in some scoliosis, which can put you at higher risk for pneumonia. So that combination of factors, but especially the lack of access to care is really creating this very, very difficult and vulnerable situation. We know that people with intellectual disabilities are at risk for - and developmental disabilities  - are at risk for respiratory illness, as I mentioned. Pneumonia, influenza. Deaths from pneumonia and influenza that are just just higher. And we don't have the data yet. But we certainly have some indications that it's still this way with COVID, like the data from New York, indicating that people with intellectual and developmental disabilities are five times more likely to get COVID. When they basically surveyed, I think it was the DD agency, essentially, the roster of that, to determine diagnoses. And it's much much higher than the general population, and then they had a five times higher death rate, mortality rate as well. Those are preliminary findings. We're not doing that even yet in California, nor around the country. And I think that we do need to do that to get better understanding. But in the absence of that understanding, we absolutely need to do everything that we can to prevent any worsening access to care, any more discrimination. And so there are directives. Obviously, you probably also understand that certainly there are instances where we've been looking and very concerned about not getting access to treatments, not getting access to nasal swabs, and other, and chest x rays and so forth that are needed. And similar to Judy's experience, even when you do, it still takes a very, very long time to be able to get the results. And we know, we've heard from New York to Australia, that this is happening. And we've seen the policies too that are allowing this to happen. We saw that in Alabama, with their crisis directives around, specifically around rationing of ventilators. And there has been a response to that. So while we know that people with intellectual and developmental disabilities are often left behind, especially in any kind of humanitarian emergency like this. And we all experienced this. There are directives that actually are on the national scale and the California scale which are prohibiting this discrimination. And we can actually use those. So I want to make sure everybody's educated on them and then think specifically about how to go about it making sure that you're able to advocate on your own behalf, on behalf of your loved ones. 

So the directives from both California and the US are centered on provisions that are already in the ADA, the Americans with Disabilities Act and in the Affordable Care Act. And they prohibit discrimination in health programs and activities against any particular group, including developmental disabilities, including disabilities in general and developmental disabilities. So it specifically says that no one should be denied medical care on the basis of stereotypes or judgments, or essentially any reports of disability. So that's first of all. Secondly, these directives specifically say, Yes, we recognize that the healthcare system is in overwhelm, that we need quick and efficient care. That it is a crisis. of care, but we still must have fairness, equity, the values that we see in our own civil rights documents. So dignity, the same dignity and worth as everyone else. And we can take these as directives that we can make sure that everybody is aware of. And when you are going into a situation in healthcare to try to advocate for yourself, a couple of areas that I've been thinking about, that we've been working on at Special Olympics that I think are relevant here. One is, we've been working on a self advocacy toolkit for individuals and for families in healthcare settings, and that is coming out next week. But in the meantime, I think that there are four simple things that we can actually concentrate on within the healthcare system. So one of them is making sure that we are able to advocate for communication. So that if, so just as Judy was saying, there are difficulties with making sure that you have a communication device or an interpreter. But definitely there are directives that are requiring that. So both at the state level and at the national level. So if you need a picture board, if you need an augmentative communication device that is in this directive. And secondly, in terms of having a support person, that's the second area that I think that we can work towards and make sure that... It is not directly in the directive, but it certainly is within the bounds of the ADA and the Affordable Care Act, that if you need that support, to be able to, number one, communicate and number two make decisions, then you should be able to have that support. And I've seen circumstances and actually, in my own life, in which I haven't been allowed to be in the hospital for my own family member. And what we've tried to do when it's necessary, is to use the phone and FaceTime. I'm not recommending that as a rule. I do think that there is more that we could do. And in particular, that these directives do support that. But in cases where it's not, it's not readily apparent and you're trying, I think that at least being able to do that on FaceTime can be helpful. A couple of other areas...we've talked a little bit about the personal protective equipment and the family caregiver protocols. The CDC has come out with those and we can use those also to work with our healthcare providers. And then finally, telehealth. So, I know that Judy, you've talked a lot about not being able to get access. The barriers to telehealth are down now. And this is something that I just want everybody to know that you should have access to your providers using telehealth. That may not be possible in all cases, but it can be possible using the phone. And I would really suggest that you work with your regional centers, but also your typical healthcare providers and just get out there and ask. So those are some areas that I think that we can work on but there's so much more that we actually need to be doing. And I think banding together to be able to push some of these barriers, because they're the same barriers that we've always had. They're just still in place. There's still really, really prevalent. And although we can use these directives, we need to be educated to do that, and really be empowered to do that. And I think the strength in numbers is how to do that empowerment.

Judy Mark  44:15  
Okay. Thank you so much, Alicia. A couple of quick questions that people have asked. People wanted a little more specificity when you were talking about how children with underlying health issues, and people with intellectual and developmental disabilities, have a higher risk of either contracting COVID or having a poor outcome. Could you give a little bit more detail on that?

Alicia Bazzano  44:46  
Yeah, so first of all, we don't have national studies showing this yet. And I have worked with the CDC and there is actually now a question on the form that states give to the CDC. But the numbers that we're getting are very, very low. So we know that the states are overwhelmed, they're not filling out those forms properly, and it's just not going to work. And we may never, we may not during this pandemic actually be able to get the data that we want. Special Olympics is actually doing a survey globally similar to what you're doing to try to get at those questions, because we're not getting the answers yet from CDC. So it's very difficult because we don't have that data. We do have the study from New York. And I'm hoping to work in other states and other places to be able to get that, but we do know some things. I had mentioned about Down syndrome. I had mentioned about CP, but there are other underlying conditions that have to do with the social determinants of health, specifically around - you had mentioned - but group homes. So these are, by definition, big groups of people who, because they can't do social isolation, or what we're all calling physical isolation, because it's a lot more difficult to do, that confers increased risk. Because of some of the challenges to be able to get even the typical health care earlier. People with intellectual disabilities and developmental disabilities may go longer with symptoms, or their symptoms might not be recognized. So I will let you know, there are definitely cases that we've seen in which people have gone in for care and said, I've got these symptoms and gone to one or two, or even three healthcare providers and not gotten tested and not gotten the diagnosis, when under other circumstances they might have. But because there are communication barriers, because there are these inherent biases and judgments, they're always in existence. We know that that's been happening as well. Does that answer the question?

Judy Mark  46:56  
Yeah, I mean, I think it's, I think it's a complicated question. Just a quick question somebody had: is HIPAA still in place for telehealth?

Alicia Bazzano  47:07  
So, the HIPAA regulations are suspended if in good faith, the medical provider is trying to give care during this time around COVID. So, there haven't been reports of massive violations of HIPAA, but you are allowed to use zoom calls or use WebEx to deliver that care. In other circumstances you might not be able to. So that's where we've seen primarily this work being done, is to bring down the barriers to the access to care. Because that's been such a problem with being able to roll out telehealth on a large scale. Now, I will say that we are moving all of our work that we usually do in healthcare. I don't know how much familiarity there is, but we do health services, including screenings, including dental, vision, hearing, physicals, and mental health. All of that are emotional wellness. We do all of that in person and a lot of our events and we're moving all of that online. And we already have some resources on fitness and wellness and emotional health already on our website at specialolympics.org. But we're moving a lot of that to telehealth as well. And I think that the entire, you know, everybody in healthcare is in this position where we're all trying to move as much as we can online. So even physical therapy, we're looking at how do you do that in the telehealth environment, mental health, etc. Dental, we can't do everything but we can certainly try to improve the access to care even on dental hygiene and so forth.

Judy Mark  48:54  
Great, thank you. Perfect. Okay, we're gonna.... I think those are the questions directly for you. But I'm sure we will have more. I'm going to move on to the next speaker. Thank you so much, Alicia, our next speaker and we're also really honored, another national leader, is Tauna Szymanski. Tauna is first and foremost a parent, just like I am, of a person with a disability. But she is also the Founder, Executive and Legal Director of Communication First, which is a really incredible organization that fights for the rights of people with communication disabilities to have access to communication supports. And we wanted to ask you a bit about the work you've been doing and what you've been hearing as well, Tauna.

Tauna Szymanski  49:42  
Okay, can you hear me?

Judy Mark  49:44  
Yes, we can. 

Tauna Szymanski  49:45  
Right now so Judy asked me to do some slides, and I see maybe I'm the only one you asked to do slides, because I may be the only one. But I've got slides, I'm going to try to share the screen here. And can, can you see that? Yeah, good. Okay, I see nods. All right. So as Judy said. Well, first of all, thank you so much, Judy, for organizing this and your leadership on this issue. I'm honored to be invited to speak to the webinar today on these issues. So I was specifically asked to talk about impacts and rights related issues for our community that we focus on at Communication First. We're a really new organization. So for folks who haven't heard of us, or don't know about Communication First, I just wanted to introduce the nonprofit. We are a cross disability organization, meaning that we focus on...or sort of the population we focus on, is anyone in the United States who cannot rely on speech to be understood. So that could be regardless of cause, if you're born with it, if you acquire a disability or condition later in life, and regardless of the types of communication supports you might need. We estimate that there are about 5 million people in the United States who fall into this category. Some people may temporarily not be able to speak or have sort of intermittent ability. Some may, you know, with age related conditions acquire some sort of speech loss. And the other sort of portion is the population that Disability Voices United and Special Olympics, for instance, focus on, so people with intellectual and developmental disabilities. We only formally launched about six or seven months ago, so we're a pretty new organization. We're nationally focused, including California. And we're also led by and for people with disabilities and family members, as opposed to the professional side of things. We're very much a rights and policy, advocacy-focused organization, in contrast to sort of direct service provision, and sort of how to use augmentative communication, that sort of thing. So much more on the rights and policy side. You can check out our website if you'd like to know more about the organization, we're at communicationfirst.org. So just a little more background about what sort of motivates us as an organization. You know, just all of this is made a lot more salient just in the last few weeks, but just how essential communication really is. And I think that's one of the things we're working on is really, if you haven't ever not had the ability to communicate with speech, you don't really think about how important communication is. So it really takes being in the shoes, I think to really understand it. I've just thrown a couple of quotes from folks in our community, including the first two from my colleague, Bob Williams who's really, he works for communication first. And he's an AAC user himself. And he has written that "Communication is a basic human need, a basic human right, and more than this, a basic human power." He's noted that "oppression can only be imposed when people lack an identity they name, lack agency and lack voice." And then Matthew Hodge says, "Communication is life. If you can't communicate living is almost impossible." I was building the slides from something else I presented a month ago, and these quotes just really jumped out at me as having so much more meaning and different meanings just in the last in the last month. So I thought I'd throw them in there just to help frame our issues and just really how vulnerable our community really is.

So some of this has already been covered, but just to sort of go over the unique impacts to our community of folks who, who rely on AAC augmentative communication to communicate. There's sort of two categories: One, if you haven't been affected with COVID-19 so this, you know, barriers to communication, other essential supports, we always had those issues, they're just even more critical now. And this includes folks who can't come to the home, who can't provide hands on communication related sports supports and other disability related related supports. It includes barriers like not being able to get access to an AAC device that you may have had at school, or if you're having issues, technical issues with repair or charging or whatever else or software issues, not be able to get that hands on support there. So increased barriers to being able to communicate during this time. And as a result, greater barriers to being able to express our needs, our preferences, our concerns, our symptoms, as was just mentioned, our fears. Greater barriers to take advantage of all these online virtual social opportunities, and then most critically, I think, to advocate for our own selves and our rights and our interests. So those two things sort of go hand in hand, if you have a barrier to accessing the communication supports that you need, you're going to have a barrier, you know, being able to express yourself and communicate your own needs and preferences. Obvious sort of access barriers to K to 12 distance learning opportunities that many, if not most school systems have begun providing. So you know, while some folks who have IEPs are able to get services and supports that they need online, so many folks in our community rely on one-to-one aides, just because of the significance of their disability support needs. And it's impossible to to access those accommodations. So folks in our community who really need full time support person just to turn on that iPad that the school sent home. You know, they're relying...you know, that's just a huge barrier that they're not able to access, that school districts aren't able to provide. So, you know, in the absence of all those usual supports and services if character caregivers, usual paid caregivers and support providers aren't able to come to the home, family, caregivers are often needing to leave their jobs, take leaves of absence, and to step into provide those services. A lot of these I have mentioned already mental health impacts, obviously disruption to routines. What we find is, you know, if you can't rely on speech to communicate, people make assumptions about your ability to understand what's going on around you, and your sort of fragility and ability to deal with information. And so oftentimes what we're hearing is people aren't being told what's going on, they may hear snippets of Coronavirus and COVID. But they're you know, they're not giving...entire...of why their entire lives have changed and why their routines have changed and why they're not being...or why they're not able to see folks that they normally see. So that's getting to...

Judy Mark  57:19  
Donna, can I just ask you to... the interpreter, the Spanish interpreters asked you to just slow down a little bit, your speaking. Thank you.

Tauna Szymanski  57:26  
Perfect, Yup. So that is contributing to greater confusion, anxiety and of course fear that the caregivers they do have. Now family caregivers generally, that what will happen if they get sick, and of course obviously even greater social isolation than then they experienced before. The safety and physical health impacts, you know, the shortage of protective equipment, personal protective equipment, and the lack of access that our community is being provided even when we often need that equipment more because of our often high physical support needs that we need on a daily basis. There have been some efforts to try to designate personal care attendants and direct support professionals as critical care health care workers so that they are able to get be in that front first line of folks who get access to PPE. We're concerned about the increased risk of neglect and abuse that that is occurring due to both greater caregiver stress but also to this increased isolation and confinement that everyone is experiencing in part because - not just due to caregiver stress, but also due to lack of sort of people checking in frequently and stopping by and neighbors, you know, keeping an eye on things and that sort of thing. We are also concerned about, you know, in part because people are having to leave jobs to take care of family members. You know, unique impacts in our community, greater economic impacts, I think on our community and concern about access to food and nutrition. Particularly because it's difficult to get to a grocery store, especially if you know...a lot of grocery stores, at least in our area, only one person can go in. So if you are at home with one caregiver, how is that going to work when you need full time support? So a lot of sort of things that people don't necessarily think about that are uniquely impacting our population, because of our high support needs. Then this additional concern that was already mentioned, this very significant risk of being institutionalized or re-institutionalized in group facilities or nursing homes away from your home and community, where of course, as we've seen in the press, there is an extremely high risk of exposure to geting the Coronavirus. And then of course, just the usual issue with such institutions with higher rates of abuse and neglect. So then the sort of other side of things is if you are a person with communication support needs, who does become infected with COVID-19. You know, the two big issues we are focused on is this this question of being denied access if you need to be hospitalized to the communication supports that you might need when you're in the hospital to communicate your needs, the pain, your preferences about things. And to ask questions about what's going on and about the care that is being given to you. And it's helpful to remember that, you know, as a patient... and Alicia can speak to this... But doctors have an ethical obligation to seek informed consent from all of their patients. Even if they have disabilities, and, you know, the only way you can actually get informed consent is to communicate it. And if you don't have access to your communication supports to do that, there's not just a legal issue there with preventing access to communication, but there is an ethical issue that healthcare providers are having to deal with in that in that instance. So we've found it helpful to raise both of those issues, the legal rights issue, but also the ethical issue that medical providers are obligated to seek that informed consent. And that's another reason that communication supports really need to be provided. And then the second big area that we're concerned about is this medical rationing issue, which refers to the instance where people with disabilities are going to be discriminated against in hospital settings when resources like ventilators and intensive care unit beds are short, right? They're scarce. 

So if there's only 10 beds, what's going to happen, who's going to get those? And we've heard so many stories about the default policy being, We're just gonna make assumptions about the quality of life of someone with a disability and about their potential to live longer lives, and we'll just discriminate against them based on all these assumptions. That is completely illegal. That can't happen. And luckily, I think that disability community has done amazing work over the last two weeks in particular, making that known and taking legal action and being quite successful so far, with getting getting a lot of those policies changed. So just bottom line is, you know, without those communication supports and a hospital, you can't advocate for yourself and people will make assumptions about you. So we think as an organization, it's critical to really focus on... if you are going to be hospitalized, and you are a person who can't rely on speech to communicate, thinking about what you need in order to do that and thinking also about this question and the reality that some hospitals are attempting to bar people from going in. For good reason, I think, you know, there's a good reason to have that policy that no, you know, family members can accompany a patient in. There are legal arguments that can be made reasonably that it would be a reasonable accommodation to be accompanied by a support person who can help communicate. But think about all the various things that you might need in that situation to be able to communicate your needs. And so we put together, Communication First put together a couple of weeks ago, a communication rights toolkit. I included the URL there on the slide. And it covers basically your legal rights in hospital settings both on the communication support and accommodation issue, but also to include the discrimination medical rationing piece. Because we know that, you know, our community of people who cannot rely on speech to communicate, even among the group of people with disabilities and aging people. I mean, they will be the first really even among the disability community, almost certainly to be discriminated against in receiving medical treatment, in no small part because they can't advocate for themselves without communication, right. So both of those issues are addressed in the toolkit. It includes not just a plain language summary of your legal rights and links to the actual laws, which can be printed out and shown to healthcare providers in the hospital, but it also includes a one page form that we encourage all of our community members to print out, to think about, and to fill out now while you're healthy. And to list all of the communication supports and accommodations you might need in a hospital setting, and to think through what would happen if you aren't going to be allowed to have your XYZ person accompany you, who understands your communication needs, or what happens if that person gets sick and actually, physically can't be there with you. What are your sort of plan B's and C's and D's on getting access to communication. The toolkit also includes just some tips on how to advocate for those rights, how to file a complaint, numbers to call, that sort of thing. And it also includes links to communication boards, picture boards, health passports and similar resources that others have put together. And we are updating this as we learn from experience. So if you all have comments on it. If you've had personal experience in a hospital as an AAC user, and were denied communication sports or were given them, it would be great to hear from you about those experiences so we can make this as useful as possible. It's been translated so far into Spanish and Chinese. And if folks are interested in helping us with other languages, we'd love to have that assistance. So in addition to the toolkit, the US Department of Health and Human Services Office of Civil Rights. Gosh, about a week, two weeks ago now tomorrow, I guess... issued a guidance document on Disability Rights during COVID-19 to clarify the medical rationing issue and also address some communication access issues. 

Unfortunately, the very first edition of that, the very first version, actually left out our population. It was unbelivably offensive and blatant to us. It listed people with vision and hearing disabilities, but completely left out the third category of folks who can't rely on speech to communicate. We advocated fairly quickly as soon as we saw that, and within a couple of days they issued a new version, luckily, explicitly affirming the legal obligations of healthcare providers to provide the effective communication supports that not just blind and people who are deaf and hard of hearing and low vision have, but the those that people who have speech disabilities might need. And then specifically, it talks about addressing the needs of people who use AAC and and have impaired sensory, manual, and speaking skills. We are just as of yesterday, beginning to collaborate with the Partnership for Inclusive Disaster Strategies on their hotline. They have a COVID-19 healthcare support advocacy hotline, which actually was something...this was developed several years ago after a hurricane. I can't remember which one, but they've turned...the focus now is on the current situation. And we are partnering with them to ensure that communication support and rights questions that come into the hotline will be fielded. So we're sort of building up a team of volunteers, lawyers, and communication support professionals that can field and respond to hotline inquiries that come in to that toll free number. And also to the email for people, obviously, in our community who aren't able to speak, email maybe easier to to access. So this is the first time I'm actually announcing that publicly, but we'll be starting to do that probably next week. And then the final thing we're working on is really focusing a lot on national legislative and policy advocacy, largely partnering and working with other national disability rights groups to work on ensuring that US Congress adopts legislation that really adequately protects the unique needs and service requirements of our population. We're currently looking at the fourth COVID bill that is already starting to be worked on, but it likely will be passed the last week of April or first week of May. So we're focused on that. And in that regard, just some things that you all can do if you're interested in taking action. Number one most important thing I think right now, is to make sure folks, your legislators know what your needs are and what your unmet needs are. They are not hearing from our population from folks who need AAC or for people with IDD generally about what's going on, what your fears are, what, what's going on with your direct support provider situation? Are you facing being institutionalized? And what do you need to ensure that doesn't happen? So folks are being encouraged to develop short videos, take selfies or write a few sentences. Tweet them directly to your members of Congress, send them to your local media, email them directly and just tell your stories. And it is more than ever, because this is such a new situation. People really need to hear about actual stories from people on the ground. So we strongly encourage folks to do that. And if you need some help with that, please do not hesitate to reach out to us and we may be able to help you put together short messages on that front. Sign up for our newsletter on our website if you'd like, and you can follow us on social media. And if you would like to volunteer or tell us your story more privately about how you're being impacted, or if you need help advocating for your communication rights and in a hospital setting or otherwise, or to ask any questions, please don't hesitate to email us at info@communicationfirst.org. That's it for me.

Judy Mark  1:11:23  
Thank you so much. I have a couple questions, but I believe that...Alicia, Dr. Bazzano, wanted to also comment on something that you were talking about. So go ahead Alicia.

Alicia Bazzano  1:11:39  
Yes, if you don't mind. I really, really appreciate all the work that you're doing. And I think it's critical. And especially I want to echo some of the things that you mentioned with regard to the Partnership for Inclusive Disaster Strategies, which we're also part of, as well as the health passports. I want to speak just for a second not as an advocate and not as a family member, but as a healthcare provider. And here's, here's the thing. No one in...no health professional, no one in the healthcare setting ever wants to be or should be put in the position of making decisions that are going to discriminate against a population, any population of people. This situation is a crisis, and it stresses the entire system. And it's a system that actually has never really been educated on people with intellectual disabilities. 80% or more of healthcare providers out there have never ever had exposure or training on people with intellectual disabilities. So it is incredibly difficult to be in the setting where there is no education that's going on for that. And as difficult as it is, I want to suggest that one of the things that we can do as patients and family members, is actually in the moment try to educate our healthcare providers so that they aren't looking through the lens, so that they do suspend those judgments. We all make judgments immediately when we meet someone. This is just part of our prefrontal cortex. But when we can take those preconceived notions and judgments and leave room to understand an individual, understand their situation, their values, who they are, that's when we can actually get to a much better situation and that care that we're looking for. So what I'm asking is take the steps to educate and there are kind of like four different areas to do that, I think, before we get to the point where we need to be calling disability rights and trying to get to this situation. Because as hard as it is to do this kind of education, it's even harder when you're in a situation that becomes adversarial. So the first thing you can do is to very kindly say, it would help me if I could have my provider or sorry, I could have my support, I could have my AAC. Because even doing that will get you further in the door. And reminding the healthcare provider, You know, a lot of times people use jargon. I use jargon I'm sure and in some kind of way that I'm not capable of but actually coming at the situation as, Can you slow down? Can you use different language? So that we all come to a shared understanding. The second thing after communication is that support person. And again, I mentioned, you know, working within the system, your individual health provider isn't going to be able to totally change things up to make sure that you're able to be in person when the whole situation is set up where that may not be possible. But at least you can work with the person and work with that healthcare provider in front of you. The third thing is, you've mentioned and Judy's mentioned a couple of things in terms of preparation, but I would say, really try to prepare for those healthcare settings themselves. Think about preparation, look online for what a video looks like for a nasal swab, so that if you do need to get it, at least the person who needs to get it understands what it is. And there are a number of videos that actually explain that. Explain how to do the nasal swab, explain the chest X ray, explain what's going to happen. So that preparation. And the last point is really to try to talk about, just that you had mentioned, but I'm going to echo it again in a little different way. Try to talk about the notion of informed consent, the need for informed consent, in terms that are going to be, Hey, I would like to make this decision in the best way possible, and I need all the information. Or if it's not me, then my support person needs that information in a way we can understand. So let's try to do this together. So I guess what I'm getting at is we can come alongside the healthcare system, which is going to get at least some way forward, especially in that individual situation. I've been struggling to try to think about how to do that because it really is a struggle, but that's what we've come up with in kind of, in our self advocacy toolkit, at least some of that.

Tauna Szymanski  1:17:02  
Yeah, we're hoping to get some real life stories from folks who are being admitted because my imagination and my next door neighbor is actually an ER doctor and he reviewed our toolkit graciously before and from a healthcare sort of ER frontline perspective. And he thought he learned a lot actually just reading it. But we're trying to get - I'm imagining just panic in the situation where people are emotionally fraught, and the healthcare workers are exhausted and so it's not going to be, Let's sit down and spend two hours talking about what my communication supports are and how I can be helped, that sort of thing. So I think we need to refine it, as, you know, as experience sort of dictates. But yeah, it's hard to imagine - all of this is also new for everyone so...

Alicia Bazzano  1:17:46  
Yeah, and just, we at Olympics are doing a very, very large campaign to train healthcare professionals. And we've been doing this for years and years and we've trained about 280,000 healthcare professionals on IDD. But specific to COVID, that should be coming out in the next couple of weeks, in the next week, to specifically get at this. Because it is an emergency situation, that's exactly what you're talking about.

Judy Mark  1:18:15  
Thank you. There's a bunch of questions, but I want to get through the next two presenters, and then I'll go back to some of the questions for both of you. Our next presenter is Janeen Steele, also a bigwig in the field and really honored and thank you for joining us. Janeen is the executive director and founder of the Learning Rights Law Center. And I know that you have a lot that you have to cover today. But for everybody who maybe joined us late, we are doing our webinar next week, which is going to be Wednesday at 9am, is all completely about accessing special education during this time. But we felt that it was important to get some of that information out this week in this week's webinar. So thank you for joining us, Janeen.

Janeen Steel  1:18:59  
Thank you so much. And thanks everybody for being here. And it's nice to meet everybody. And I'm going to be brief because you do have another training. So I think that I'd like to highlight what we're doing and sort of what we're seeing. Learning Rights Law Center is located in Los Angeles. We are open and we are all remote. You can still access our services and what we're doing in response to, you know, advocating on behalf of students with disabilities, regarding education access, is, you know, developing a brief service and counseling advice for students that have education issues. Because there were tons of issues happening prior to the pandemic, but now we've seen an increase of other issues. And so we're developing, you know, resources and support to respond to that. And one thing else Learning Rights does is a large training program that we have, and we provide training for families about their rights. We've had to suspend all of those in person trainings throughout Southern California. And we're working to put them online. And so in the chat, I'll put my email and our website so that way as we are developing some online training, both about just basic rights, but also about, you know, how to access distance learning, what does that look like. Parents still have all the rights to have their IEPs in California, there's just been two areas where they've waived timelines. And that is for getting records for students, and providing an assessment plan. But other than that, all federal rights are still in place. The biggest issue is accessing anything at all. I think this survey that you had in the beginning was exactly what we're seeing, which is just not having access to instruction, not access to related services, not understanding how, you know, communication with families that are monolingual Spanish-speaking, making sure that they have the equipment. So I really appreciated the discussion about technology. Because there was already a barrier and misunderstanding prior to COVID-19. Prior, we had problems getting access to technology and training for parents. Well, now, it's worse because now you've got families that may not feel comfortable getting a computer and accessing it and having their child work with it. So there needs to be additional training which parents can ask for. They can ask for the technology that they need. You can ask for an IEP right now. The other thing we're doing is continuing our legal advocacy. We represent, we see about 700 families a year in the office, we've converted it to be by phone. So we're doing that as well as our legislative education. Because one of the big issues is that I think if there's nothing else that that is important for me to talk about today, is that everybody should be aware that, to oppose any waivers to special education law or any IDEA laws. Because that, you know, Betsy DeVos has to report back to Congress about whether or not to recommend any waivers. We've opposed it. I think a lot of the community is starting to speak out. But there's no reason to waive any rights under the law right now because it's about figuring out how to implement the IEPs as you have them. If they need to have some amendments, there's a lot of flexibility in the law. There's no reason to suspend anything. And so I think that that's one of the most important pieces. And then, if families have questions, I think definitely getting on the webinar next week, we'll have questions. If people want to call our office. And as we're developing some of our resource guides about navigating distance learning for students with disabilities, we're going to be uploading them both to Facebook as well as our website.

Judy Mark  1:23:35  
Thank you. Fantastic, really, really helpful. So bottom line is for those families who have children who are still in school, you should be getting your services. You should be demanding this.

Janeen Steel  1:23:47  
Yeah. And then it doesn't have to look the same. Right? It can be you know, if you have an hour of speech, it can be teleconferencing. You can have... there's a lot... just look at the IEP and think about how it could be done for distance learning. And I think that, you know, it's time to be creative, but it is not okay to not get anything. And it's not okay, well, from what I'm hearing is to say, We're going to call you, and those calls don't happen. And so I thin the biggest problem is that there's just a lack of providing services. It's all over the place. There's nothing, there's no continuity of who's getting what from our experience.

Judy Mark  1:24:31  
Yeah, um, you know, in our community, Janeen, we're hearing a lot. And my son is now out of school. But I think if he were a younger child, there's no possible way he could have accessed his education and his therapies through an online...He was not able to sit still long enough to be able to access it. And you know, I'm really, really concerned that we're going to enter the fall. We don't know what's going to happen in fall, but hoping that we are entering the fall and all going back to school, that they will be so incredibly behind, having basically been out for six months. So, you know, what should parents do?

Janeen Steel  1:25:13  
So one is trying to get what you can now, right. You know, advocate for the distance learning and navigating as best you can with the system. And contact people that are, you know, that are advocates in the community to see what you know, what they recommend, how to navigate, because I think that's the big issue. The second thing is, you know, there's been some recommendations and guidance put out and compensatory education is something that can be asked. That's one of the things we don't want waived. That's one of the risks we don't want, because there will be a gap. Any student that has a loss of instruction. There's going to be a gap when they return, especially for students with disabilities that may have a harder time recouping that prior information or knowledge. They may need more time to kind of ease back in because it's also a lot of trauma going on. So there's guidance to not waive any of those rights that include compensatory education and also discuss that. So there can't be a wholesale, just I'm not going to provide anything. And there has to be a discussion about how do you transition back as well.

Judy Mark  1:26:35  
Thank you, Janeen. Alright we have a couple more questions for you, but I'm going to go on, so that we get all the speakers out there. And then I'll be throwing back a bunch of questions to you. Thank you, Janeen, that was fantastic. Our final speaker, Zeenat Hassan, who's a staff attorney at Disability Rights California. And we really asked her to come on because we know certainly from our survey, our initial survey results, that we're hearing a lot of people are having significant concerns about being able to pay their rent. And she is the housing expert at Disability Rights California. So thank you for joining us.

Zeenat Hassan  1:27:12  
Thank you. Can you hear me okay? 

Judy Mark  1:27:14  
Yes, we can. 

Zeenat Hassan  1:27:15  
Yeah, thank you. I would not say I'm the housing expert, but I think I know enough. But thank you for that. So I appreciate having the opportunity to talk to you today. Because housing right now is complicated. And the reason for that is the rights that tenants are entitled to are a combination of federal, state, and local protections that all mesh together. So the specific protections that a tenant is entitled to varies widely across the state, depending on where you live. One thing that I really want to emphasize today is that despite what you might have heard on the news or on social media, there is currently no statewide moratorium on evictions or on rent payments. What we do have are some procedural protections on the state level. And we do have that being supplemented with some local protections. But nothing that we've seen right now is a true moratorium on evictions on rent payments. And the reason that distinction is important is because, one issue that I think a lot of housing advocates are concerned about, is once the state of emergency gets lifted, we are going to see a tsunami of eviction cases flooding the courts. Because you are going to have this backlog of several months of cases that haven't progressed suddenly making their way into court. And a huge part of those are going to be backrent cases for big amounts of money. So for folks who aren't able to pay their rent right now, there's currently no rent holiday. So even if you are entitled to local protections, or your landlord just says, Hey, it's okay, I'll give you a couple months, those months are going to add up. So that's something to keep in mind as we as we move forward. So what I'd like to do with the time we have is to run through the three statewide protections that we do have that apply to everyone. I'll say a quick note about local protections that may apply to you. And then I'll end with with some pieces of advice.

So the three pieces of protection that apply statewide. There are two executive orders that pertain to eviction. And there's one set of emergency rules from the Judicial Council, which is the governing body that decides rules for how all of the courts in California operate. And I'll take these in chronological order so that hopefully it'll make more sense. So the first executive order pertaining to evictions, that is N-2020, which was signed on March 16. That executive order empowers local governments to adopt substantive protections for non-payment of rent cases that are related to a loss of income related to COVID-19. So that executive order in and of itself does not provide any substantive protections or changes in the law. It just empowers local governments to enact those protections if they want to. The second executive order pertaining to evictions was signed on March 27. And that is N-3720. This is the executive order that was very widely portrayed in the media as an eviction moratorium, and it is absolutely not in any sense of the word. So what that executive order does do is, typically in a non-payment of rent case, when a landlord files the case and gets a summons and complaint. They serve it on the tenant and the tenant only has five days to file a response. What this executive order does, is if that eviction case is for non payment of rent, and the non payment is related to loss of income because of COVID-19, it extends the deadline to file a responsive pleading from five days to 60 days. The problem with that order is that the way it's drafted isn't actually workable, because the the only way for a tenant to inform a court that they are entitled to that protection is to file an answer. And if you don't file that answer in five days, a default is going to get issued against you, which is where you lose your case automatically and the sheriff gets a writ to lock you out. So you end up with this like, circular situation where, if you as the tenant are entitled to these protections, you have to file an answer with the court in five days, telling them that you're entitled to 60 days. So it creates this really weird situation that isn't actually workable in practice. The other protection that that executive order gives is in cases where a tenant has lost their eviction case and a writ has been issued. That executive order directs the sheriff not to actually execute the writ, so not to perform the lockout of the tenant, if their eviction was for non payment of rent due to loss of income from COVID-19. The problem with that is when a sheriff gets a writ, they have no information about the underlying basis of a case. All they have is a document from the court that says such and such tenant lost their case, here's the address, you're entitled to lock them out. So that protection is essentially unenforceable because the sheriff has no way of knowing what the underlying reason for the eviction cases is. So luckily, what we do have is the third statewide protection, which is the judicial councils emergency rules that were published on April 6th. So these, again, are not a true eviction moratorium, but they do actually have some really, really good protections that get us pretty close to what a true moratorium would look like. So these emergency rules apply to all eviction cases that are open, and they do a number of things. So one is that they still allow the landlord to file an eviction case, but the court will not issue a summons on the case unless the eviction is necessary for public health and safety. So what that means is, the summons is the legal mechanism by which a court directs the tenant to file a responsive pleading. So if a summons is not issued, all that's really happening is that the landlord is getting in line in court to litigate their case, when the state of emergency is lifted, but the clock doesn't start ticking on the tenants deadline to actually file a response. So another thing that the local rules do is that it prevents a default judgment from getting entered unless the tenant missed all applicable deadlines, and the eviction is necessary for public health and safety. So this gets around the problem that we addressed with that second eviction order with the sheriff. So this basically says, you know, if you miss the deadline to respond, you still are not going to get a default judgment issued against you, unless it's actually necessary for public health and safety.

The last thing that the emergency rules do is that for all cases that were pending before these rules went into effect, it extends the deadline. Or excuse me, it pushes all trial dates out for 60 days at least. So that delays the process significantly. But again, it's not going to stop the process. It's just slowing things down. So those are the three protections that apply statewide. These may be supplemented with local protections based on where you live. And so I don't think we have time for me to go obviously into detail through all the jurisdictions, but to highlight for you some protections that you should be aware of, on the county level. Many courts, each court has the power to adopt their own rules about how much they're going to operate during the state of emergency. So some courts have virtually shut down except for things that absolutely have to be done. Others are continuing to operate as much as they can, but are moving towards like an online or telephone appearances as opposed to making people come to court. So that's important to know what your court is doing. Because if there are hearings or deadlines coming up that aren't addressed in those Judicial Council emergency rules I mentioned, the courts, local rules are going to tell you whether any of those deadlines are suspended or if your case is actually still going. The other protection on the county level to be aware of is that many sheriff's departments have made a commitment not to execute lockout orders, not to execute writs of possession, during the state of emergency. And that's a power that they have sort of in their capacity as Sheriff that's separate from what other branches of government are doing. So that also varies from county to county. But right now, I think I'm accurate to say most counties, most sheriff's departments have extended that protection in most cases. And then finally, on the municipal level, many cities are adopting ordinances that actually have substantive protections in them. So for example, some cities have adopted local ordinances that extend the period in which a rent payment is due. Others have prohibited the filing of UDs all together unless it's absolutely necessary. But those protections vary widely across the state. So I think one thing that's important to remember is, all of these protections are in addition to, not instead of the Fair Housing protections that people with disabilities already have. And so I can't emphasize to you enough when I was an eviction defense attorney, reasonable accommodation requests were my single favorite litigation tool. Because they give you so much power and creativity to really craft relief that a tenant with disabilities may not be entitled to. So don't forget that you always have the right to request a reasonable accommodation that is different from or more expensive than the protections that have already been enacted with respect to COVID-19. And I will do a quick plug for the National Housing Law Project. On their website, they have published a really good memo that summarizes California's fair housing laws, and how those should be applied during the current pandemic. They've also produced good sample reasonable accommodation request letters that have the law built into them. So those are especially useful for tenants who may not have access to an attorney. They've got a good toolkit right there. So the last thing that I will say is, I really want to emphasize how important it is to get good quality legal advice. Right now, there is so much misinformation about tenant rights. And unfortunately a lot of it is coming from sources that are genuinely reputable. So please do not believe what you are reading in the news or on social media about moratoriums. If you think you might be in trouble with your landlord, or you might have any landlord tenant issues, please, please, please contact your local Legal Aid office. Of course, you're always welcome to contact Disability Rights California as well. But please do contact legal counsel because that's who's going to give you a really accurate picture of what protections apply to you specifically in your situation.

Judy Mark  1:38:23  
Thank you, Zeenat. Quick question that came up. All this information that you provided, is this available on the DRC website? Or did you sort of collect it from various sources? 

Zeenat Hassan  1:38:33  
I collected it. Yeah, this information is all over the place. But what I can do is I've got the three, those three statewide protections, as well as the National Housing Law Project memo, and a really good summary by the Western Center on the Judicial Council rules, that I can distribute. So I think those five documents together will cover everything I've said.

Judy Mark  1:38:58  
That would be amazing. And then we can share that with the people who are here on the webinar as well as on our website, our Coronavirus website. So we have a bunch of questions, some of which are for you Zeenat, but also some for other speakers. So I'm going to go back to Dr. Bazzano, if she's available. Because the big questions that have come out from what you've said, what Tauna has said, that is really, I know a personal stress for me as well, is what are the rights of us as family members to be able to be present in a hospital room if our loved one is hospitalized? And when I ask you this, I'm not just talking about for COVID, because obviously our children and if you're a person with a disability, have higher rates of hospitalization generally anyway. And so you know, what if our child suffers a seizure, and has to be hospitalized. Or one of our staff members here, her son just broke his arm. I mean, just something really basic that can happen to people. I mean, what are our rights to be in a hospital room at this time?

Alicia Bazzano  1:40:14  
Thank you. So there are in a number of states including California, crisis standards of care. And those crisis standards of care change what are the typical standards of care. And in this case, a number of the hospitals that have made policies with regard to not allowing people to come to their hospitals, and to be present, have done this under the crisis standards of care. However, they don't necessarily specifically speak to our population of people who are in need of a support person in order to communicate, in order to support decision making, and out of medical necessity. So currently we in California, do not have a specific order to this. However, just today in New York, and I'm pretty sure due to a good deal of advocacy from family members, from individuals, just literally while we've been on this call. There is now an order mandating that family members who are support people for people with developmental, intellectual and developmental disabilities, must be permitted at the patient bedside. So what I would say is that currently, California is silent on this particular issue. However, and so what has happened is you'll see policies that are being made by the hospitals and the health plans and the systems in place. However, I think this would definitely be an area ripe for writing to the governor and discussing this with the policymakers and really for advocating for this. And we probably would get a response pretty quickly especially since New York has already done this.

Judy Mark  1:42:29  
Yeah, I mean, this is hot off the press. So obviously this is something we will get out. We will email it to everybody, get it up on our Coronavirus website, as well as, you know, certainly engage with other statewide, California statewide advocacy organizations, like DRC and the State Council, to advocate for something similar to be passed. And obviously all of you who are on this webinar, we'll be reaching out to you try to make phone calls to do this. But Tauna, I don't know if you want to add anything here.

Tauna Szymanski  1:43:04  
To clarify, there is a legal right as a person with a disability to have a...So if the policy is no family members, no friends, whatever coming in, there's a legal right under the Americans with Disabilities Act to request a modification to a policy, if that is what is needed to ensure that you have an equal opportunity to access whatever the entity is providing to other people without disabilities. And it would be an easy legal argument to make, and with a straight face, that in order for me to benefit from the medical treatment you are providing to other people in this hospital who don't have disabilities, I need the presence of this person, who is the only person in the world who can help me communicate, who can help me understand what is going on, who can help me stay calm. Because of my disability related emotional anxiety issues, if my disability is anxiety, for instance, or if my disability is communication-related, I need this person to support me. So there is a law, that law is already there that has not gone away as a result of COVID. So even if there's policies saying that this isn't allowed, the law trumps that. And it's a federal law; it applies everywhere. And you can argue that the issue is people, health care workers who are not familiar with the law may push back, and then you have to advocate, hence the the toolkits that people are putting together. So it is definitely better to have explicit statements obviously, from the States or hospitals. And also we've heard that some hospitals have actually put out specific statements about how they're dealing with patients who have intellectual or developmental disabilities. So I would highly recommend that for folks who are healthy now to look into all the hospitals they may end up in, if they get it. Look at those policies. Inquire ahead of time while you're healthy. What is your policy on this? I'm just trying to be prepared here and maybe educate them ahead of time. Well, if I get this and I'm going in, this is what I'm going to need. Can you, you know, can we talk about that now before it's an emergency kind of thing. But just so you know, the law would allow this, but you do have to sort of argue it. And the other thing to argue for is not just the presence of the person, but to give them full PPE while they're present, obviously, to protect them. So.

Judy Mark  1:45:27  
Thank you. We have a couple of questions for you Zeenat about... So I think that you said this, but I just want you to reiterate it, um, that people who lose their jobs because of the COVID crisis and can't pay rent have some protections to delay their rent payments. Is that correct?

Zeenat Hassan  1:45:50  
They may depending on where they live, yes.

Judy Mark  1:45:53  
Ordinances, okay. It's local ordinances.

Zeenat Hassan  1:45:55  
Yeah, I will just add. So in terms of the statewide protection from the executive or orders, those do have a documentation requirement. And that's an additional issue that we've been seeing. So it's not enough just to explain to your landlord that you lost your income, or that there's been lost income due in some way to COVID-19. You have to provide documentation before your rent is due. So that obviously creates issues for people who are self-employed or get paid under the table or undocumented. So yeah, so be aware that there's documentation requirements.

Judy Mark  1:46:28  
And if a person receives, this is like on section eight, but they lose their job or their income changes, they have a right to alter their section eight payments, correct?

Zeenat Hassan  1:46:40  
Yes. So that. So generally under section eight, if there's a substantial decrease in household income, you can get a recertification. And HUD has actually adopted a streamlined process to do that specifically for COVID-19. So yes, there is.

Judy Mark  1:46:54  
And HUD is the Housing and Urban Development Department of the federal government. Okay, this, I'm not really sure who's going to answer this question, but it might be me or it could be Andy. There was a question of why regional centers along with the State Council of Developmental Disabilities are not procuring and providing personal protection equipment, PPE, such as mask, gloves, and sanitizers to individuals with disabilities so people can pick them up rather than hunt them down in stores and stand in line. So I personally know a lot about this having experienced it in the last week. I can tell you this for sure that the Department of Developmental Services at the very beginning of this crisis over a month ago procured hundreds of thousands of PPEs for regional centers. And for their own use in congregate settings like intermediate care facilities and other developmental centers. And Regional Center, every single regional center, all 21 regional centers have these supplies. And they are available to you if you need them and you have been exposed in any way. Now, what I'm not suggesting is that everybody calls the regional center and try to get the supplies as a prevention measure, because that means they'll get rid of all their supplies and they won't have enough for everybody. There's not supplies for every single, for all 350,000 people served by regional centers, there's just definitely not enough supplies. But there are, I am convinced there are enough supplies for people who need them. And so while we were turned down by our own regional center, I can tell you that regional centers now have been told very explicitly, that if a person has been in contact with a COVID-positive patient, that regional centers are absolutely supposed to be providing them with PPE equipment. I can also tell you that in many cases, service providers and been given this equipment by regional centers, and so you might be able to get it from your service providers as well. You should not be having to scour and pay exorbitant amounts of money online. I don't know if Andy or anybody else wants to add to that, but you...And by the way, DDS has a hotline as they've told us on a couple of our previous webinars. And they also have a website that provides all this information with their hotline number. So if you are having any concerns that your regional center is not providing you with the support that you need, you should really call DDS. I can tell you personally, they have been unbelievably incredible with our family. And I want to be very publicly thankful to them for that. Another issue that has come up and I don't know who here would be able to answer that. I've been hearing this pretty, these stories intermittently, around State of California, that service providers. So these are direct care professionals who are driving on their way to work, sometimes in the middle of the night, sometimes during the daytime, are being pulled over by police and being asked where they're going. We have not been hearing this consistently, and certainly not in every jurisdiction. But we have heard enough of these stories where I am concerned. And so I don't know if anybody wants to answer that. I can certainly...Raise your hand if you want to answer it who's on there. I can certainly talk about this. Or Andy, I don't know if you've heard about this and want to maybe mention something that you know about this?

Andy Imparato  1:50:42  
Well, let me just say, it's crystal clear under the state policies that a service provider direct support worker is providing an essential service during this crisis. So if somebody gets pulled over, the important thing is to have some way of proving that they are providing that service. And so what we did for our own employees is we produced something that any of our employees can print out, that says that they work for Disability Rights California, and that, you know, the return was made, that the legal services we provide and the advocacy are essential services. So getting something like that from whoever's paying the service provider that shows that they are a legit direct support worker, should help them. I mean, it's it's bizarre to me that anybody thinks that that's a good thing to do in this crisis, is pull people over in the middle of the night and ask him where they're going. But to the extent that there's overzealous law enforcement, I think the solution is people knowing that they have a right to do it, and having some way to prove that they're a direct support professional.

Judy Mark  1:51:49  
So while we're on that topic, we have a similar question. We know that you were talking about advocating with grocery stores to ensure the caregivers can also be put in that, those early times. And is there some sort of ID or something that people should be carrying to prove that they're a caregiver or a family member?

Andy Imparato  1:52:14  
These grocery store policies are store by store. So unless we can get some state direction to the grocery stores, we're kind of left up to their own policies, what they're going to allow or not allow. But it kind of goes back to what Tauna was talking about. We have a right as members of the public to get services from grocery stores in this pandemic. And there are some people who, the only way they're going to be able to access that, is by sending other people to get it on their behalf. Or having it be delivered to them, because it's too much of a risk for them to go to the grocery store. So it's a matter of asking for an accommodation from the grocery store to enable them to access the goods and services that are essential during this pandemic. And when we sent our letter to the leaders of all the grocery stores, that's the argument, we were making the letter. That under the ADA, you need to modify your policies so that they're going to work for people with disabilities in this crisis.

Judy Mark  1:53:15  
Thank you. There's a question for a Janeen. If a parent has requested an IEP, with their district, is that not possible to happen at this time?

Janeen Steel  1:53:29  
So there's nothing, they still have to respond, the rules are still the same that you have the two options, either they have to...The district would have to respond to say, they're going to fund that assessment. Or they have to file to defend their assessment. Those legal requirements haven't changed. The issue sometimes comes now where students have been awarded an independent assessment, and it's very difficult to do, and you know, observations or some of the parts of the assessments. So some of those assessments may take longer, but those don't have timelines, like typical assessments. So there still has to be a response. And we always recommend independent assessments. If you're going to request, make sure you put it in writing. That it's a requesting independent at public expense, and that you disagree with the district's assessment that you're challenging. And so once that's been done, the legal requirements to respond are the same. It's the same now.

Judy Mark  1:54:34  
Thank you. Zeenat, there's a situation here in Southern California that we've gotten a number of questions about that is a housing issue. However, it is more that it's not directly about what's happening with this Coronavirus crisis. However, having this crisis is making it so much worse. And that is, there's a group of people living in a mobile home park in Southern California if you've been, who've been displaced and then replaced into their mobile parks because of... And the gas has been turned off. So they have no heat and it's quite cold where they live. And they have no heat and they're not able to cook, which what's happening is that they're now not really staying inside as much. So under normal circumstances, under normal circumstances, this would be an incredible crisis. But then when you add that you have to practice physical distancing, you're talking about now it's a significant crisis on these families. So there's a lot of families that live in this mobile home, but there happens to be, I think, six or seven family units who have a child with a disability, as well as others living in this park, who are elderly and senior who have other disabilities as well. So we're talking about rights of people, who generally have rights to have their gas turned on, but also the rights of people now under this COVID crisis. Wondering if you could offer any advice you may have, I'm also going to really recommend they contact you or others at DRC to potentially help them through this.

Zeenat Hassan  1:56:16  
Yeah, my first thing I was gonna say is call DRC. I'm really sorry to hear about that. That is an exceptionally upsetting situation. I mean, I don't know what much I can say, except for the fact that that should not be happening. That violates a variety of housing laws in a number of ways, and I think it's hard for me to give some specific advice if I don't know more about the details. So I would say briefly, contact us so we can figure that out.

Andy Imparato  1:56:45  
And Judy, I can just add, this is Andy, that Elizabeth Gomez and others, probably you, have called this to our attention. And I know that our intake is in communication with at least some of those families. I saw an email about that earlier today. Thank you for flagging it.

Judy Mark  1:57:01  
Okay, great. So we have actually a bunch of those families on this call right now. So we're gonna try to help you. We really are. We really are. So if somebody, this is for Janeen again. If somebody was supposed to have an IEP, and the IEP just never happened in the last couple of weeks, what should they be doing right now?

Janeen Steel  1:57:27  
I think the main thing is, you know, put in writing to request to the district. If they're providing any distance learning to any students, they still have to provide specialized instruction. They still have to hold IEPs, there's no changes to that. I think that there is an understanding that everybody...no one planned this, it's going to take a little while. But I think flag it, make sure you put in writing that you... find out the person's email if you can get ahold of them, call a case manager. And request. If they don't hold it, and refused to hold it, then the same, the same complaint processes in place. If you file a state complaint, the California Department of Ed has... The governor has... there's been an extension to their requirements for investigation. But that still is effective because just filing it flags sometimes where like somebody will pay attention because there's been a complaint file. But I really think it's follow up. I think just like in before the virus and before the pandemic, you have to be proactive and make sure that you're following up. And I think now more than ever, because it's, you know, there's so much going on and people are juggling. And so I think it's follow up, and then keep track of you know, who to call. And they're supposed to be still holding IEPs, scheduling them. They can do them by phone and still have the team members present.

Judy Mark  1:59:06  
Great, thank you. I know that there is a few other questions, but some of them...I want to apologize if we didn't get to everybody's questions. There's some some reasons I choose questions, some questions rather than others. These webinars, I should just say, generally are specifically for people with developmental disabilities -  or people with any disability. Let me rephrase that people with any disability and family members. So oftentimes we get questions from service providers that are completely legitimate questions, and very valid concerns. And we're so appreciative that service providers come on to our webinars because I think there's still a lot you can learn and a lot of regional center staff come on as well and DDS staff. We so appreciate you being on it. But we are trying to target questions and answers from the people that we represent. So they may be some of the reason. And then there's other people who were asking kind of more specific medical advice. And I don't want to put Dr. Bazzano in the position of offering any specific medical advice when she may not know the individual. So that is kind of the reason. But what we're going to do is get this out on our...get this webinar recording out on our website within the next 24 hours. It's also, we have a YouTube channel, you can search for Disability Voices United on YouTube. And all of our webinars are on there, including a nifty video that I made, because I'm the most uncrafty the person and cannot sew anything. And I teach you how to make a cloth mask by using just folding techniques, which apparently I at least have that skill. So you can see all of our videos there and want to thank our illustrious panelists. You guys were incredible. Hopefully everybody's going to stay safe. We will be back with you. And we'll send out emails to everyone about our next webinar, which will be Wednesday morning at 9am, specifically about special education. And we have incredible panelists for that, including not only people from the California Department of Education. But we have teachers who are doing it the right way. We have, we have school district leaders, we have researchers in distance learning, who have been doing this for many years that are now really coming to the forefront. So thank you all. Just to let you know, we have two more planned - we're doing one a week. The following week, we're going to do one on racial and ethnic disparities and how we're seeing that play out in the COVID crisis. And the following week, we're looking at doing one on the self determination program for those of you who are in that, and how that is working out. So thank you all for joining and we look forward to seeing you again next week. Stay safe everybody. Bye bye.

Transcribed by https://otter.ai