ASHLEY BROMPTON: Good afternoon, everyone. Thank you for joining us today. My name is Ashley Brompton, with the Center on Victimization and Safety. I would Like to welcome you to today's webinar session. We are pleased to bring this to you as part of our 2021, End Abuse of People with Disabilities webinar series. 

Before we start our discussion today, I want to provide some information about the accessibility features of the Zoom webinar platform that we use, as well as how you can interact with us throughout the session today. 

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Today, we will have a bilingual space. The presentation will be in English, with American sign language interpretation. We will pause about every 20 minutes for an interpreter switch. This just ensures the highest quality of interpretation and that we're all working effectively together to have the best interpretation that we can today. 

If you have any issues with either the American sign language interpreting or the captioning, please let us know in the chat or the Q&A. We have a few people who are working, solely dedicated to help you with any technical issues you might have. 

We do value complete access in our virtual sessions. If we have a technical problem, we will pause to address the issue, if the issue cannot be resolved we may have to cancel the session. If that happens, we will send out an email to you with further information about additional details. Feel free to use the chat to communicate with each other. You can introduce yourself, share whatever you would like in the chat. 

We do ask that if you have a question for the presenters, that you please use the Q&A function. Again, you can find the Q&A by clicking the Q&A button at the bottom of their screen. That just make sure it doesn't get lost because we try to hold questions until the end of the session, and we want to make sure that as the chatter is scrolling we don't lose your question. If you would like to ask a question in American sign language, please raise your hand and one of our staff members will follow up with you about your need and give you video privilege. 

Again, we are going to try to hold questions until the end of the discussion. If there is something particularly relevant in the chat we'll raise it earlier, but we are trying to hold them as much as possible. 

Another note about the chat pod, you cannot save the chat or copy and paste from the chat. That is a security measure that Zoom puts in place. If we share links in the chat, you should be able to click on them. However, we will also share them with our participant materials after the session. So if for some reason you can't access the links that we post, we'll make sure that you get them following the session. 

Right now if you joined using a web browser, you may only be seeing the American sign Language interpreter. That is because we have the American sign language interpreters spotlighted for the recording. If you're using the desktop application which is what we recommend, you should have a few viewing options. In the upper right-hand corner of your Zoom window, you should see a button that says, View. When you click on that button and you have a few options-- you have an option that's says, speaker and an option that says, gallery. 

We would recommend selecting gallery view, that way you can see the interpreter and all of the panelists today. We will be recording today's webinar session. The recording and materials will be posted on the interviews of people with disabilities website. A record of attendance and materials from this session, including again, those links and resources, will be posted in the chat for you to click. You can click on that link, and then have access to those materials that way. 

And with that, I want to move to our session today, which is entitled One Year Later, Reflections on Sustaining Services for Survivors with Disabilities during COVID-19. I want to take a moment before we get started today to recognize the enormity of the past year for all of us. We know that about a year ago, our lives changed in ways that we could not even anticipate at the time. None of us had any idea the gravity of what was to come. 

Survivors with disabilities and service providers faced a new reality over the past year. And our community and the people that we serve have shown resilience and ongoing adaptability that we didn't even know many of us had. We want to take the opportunity today to recognize that it's been a year of us addressing this and constantly being adapting and constantly in an ever changing landscape, and to just take some space for that. 

It's OK, if you need to walk away, if you need to take some space with your thoughts or you need a few minutes. We understand that it's a lot, and we have been trying to address these issues for the past year. And we really want to look today at where we've been, what the impact has been, and where we are going into the future. 

So what does vaccination look like? What does this slow and steady return to normal start to look like when it starts to happen in our various communities. And I'm very excited today that we have three amazing panelists with very different realms of expertise, who are going to share with us some of what we have see happening in the field and some of what they've been able to accomplish. 

There is no PowerPoint for today's session. It's designed to be a conversation, an opportunity, to reflect with each other. Please feel free to share your thoughts and your feelings in the chats. And we do want to hear from you, and we want to hear what your experiences have been and not only what questions might come up, but also just what your experiences have been. 

And so with that I want to move to our panelists. And our three panelists today are Shanda Poitra Max Barrows, and Diane Clark. And I'm going to ask each of them to introduce themselves and a little bit about themselves. If you all could each just share your name, your organization, and a little bit of what you do, your pronouns, and we're also going to ask that you share a little bit of a description of yourself and your positioning currently with our audience. And we'll start with Shanda. 

SHANDA POITRA: Hello. My name is Shanda Poitra I am the co-founder and director of Turtle Mountain Empowerment Self-defense. We are located on the Chippewa reservation in Belcourt, North Dakota. I'm a member of the Turtle Mountain band of Chippewa Indians. I'm also a surgical technologist for the in house service, working in health care. My pronouns are, she and her. 

And just to give a little background as to what my program is doing to promote an empowerment self-defense, is currently training to become our own international impact chapter. The impact chapter that are mentoring us is from Boston, Massachusetts. And part of their curriculum is teaching impactability, safety, and self-defense. And what that is, is we are training to teach people with disabilities to recognize unsafe situations, and respond with effective self protective behaviors. 

Our students learn skills that are relevant to sexual violence, attempted abduction, bullying and harassment, as well as how to assert and advocate for themselves in everyday situations. Examples are like deflecting and escaping a bullying situation, assertive communication, and self advocacy. To resist inappropriate sexual touch from a caregiver or adults, including workplace sexual harassment. 

We teach effective communication and conflict resolution in the workplace and adaptive physical self-protection skills. And just to give a little description of the atmosphere I'm sitting in right now, I am in my living room, I have my sofa behind me with my big picture window. I am a Native American woman with brown hair, and I'm wearing a black cardigan. 

ASHLEY: Thank you so much, Shanda. Max, would you mind introducing yourself again, your name, your organization and a little bit of what you do, your pronouns and then a description of yourself. 

MAX BARROWS: Yeah. So I am Max Barrows. I go by he, him, his. I work for Green Mountain Self Advocates, which is our self advocacy organization in Vermont. My job title is outreach director for the organization. I provide assistance to all the groups, about 20 plus of them here in Vermont, all of which have people with intellectual and developmental disabilities, most adults but there are some groups that are made up of high school students. 

I am sitting here in what used to be my brother's bedroom, but now it's turned into an office. And I mainly have a blank wall behind me, but two things hanging up on it, a picture of former President, Barack Obama, with the word hope underneath it, which is colorful, mostly red, white, and blue. And directly behind me is a yearly calendar with one of my favorite dogs, Siberian Huskies. 

I am pretty much a person-- not pretty much, let me take that back. I have a disability. I'm on the autism spectrum, and I am glad that I get to present today on this panel. And I also work for SARTAC which stands for the Self Advocacy Resource and Technical Assistance Center. And what that is, is we are an organization where there is information that we get from self advocates for self advocates, and it helps self advocacy organizations throughout the country along with groups within it to maintain their status. So that's what I do. 

ASHLEY  BROMPTON: Thank you so much, Max. We have someone in the chat who's saying that they're a big fan of GMSA. So we'll just throw that out there if you have not had the opportunity to see some of the great works that GreenMount and self advocates do and SARTAC. And one of the resources we'll link is a link to the SARTAC resources. You'll definitely get t to see that after the webinar. We're also going to post the link in the chat at some point today. 

[INTERPOSING VOICES] 

MAX BARROWS: I'm so sorry, I forgot to say that I'm a black male. 

ASHLEY  BROMPTON: Thanks, Max. Diane. Diane, you're muted. Would you mind unmuting? Thank you. 

DIANE CLARK: Oops. Sorry about that. My name is Diane Clark. My pronouns are she and her. I'm with Hubbard House. And we're a full service domestic violence center in Jacksonville, Florida. 

We operate a residential shelter and extensive outreach services, including legal representation for survivors. I'm part of a disability grant collaboration. We've been collaborating since 2015. And our other partners are the Center for Independent Living Jacksonville, the City of Jacksonville, and the Jacksonville Sheriff's Office. 

I'm sitting in my home office. I'm a white woman with sort of shoulder-length brown hair. I'm wearing glasses and a red top. And the background is kind of a pale green painted wall. 

ASHLEY: Great. Thanks, Diane. I wanted to start out today talking about the impact that COVID-19 has had on all of us and our work and the people that we serve. And I wanted to start with Shanda. Because I think that the community that you serve has been really impacted by COVID-19, especially the program that you're running. I don't know if you wanted to talk a little bit about the work that you've done with people with disabilities and how it's been impacted by COVID over the past year. 

SHANDA POITRA: Before COVID, we were working quite regularly in the school systems, middle school, high school. We were also working with a program called [? Calyx, ?] which is for adults with disabilities. And when COVID hit, everything we were doing came to a halt. 

We're in a very small rural community. It's a 6 by 12 mile reservation. And so because it's more of a poverty stricken area, we were really lacking the resources to be able to continue our work. 

And it was difficult to try to navigate around the COVID issue with everything going virtual. Not everybody has access to Wi-Fi or a computer, laptop, or anything like that. So we have just been maintaining our Facebook page and posting on there regularly and having discussions and such things and responding to people with questions and people who needed advice. We also have a list of other resources to offer people in the community should they need more help than what we can give them. 

Yeah. So pretty much the last year, we haven't been able to really do any workshops for people with disabilities. But now, with the vaccinations happening, we do have plans to pick back up again. It's looking very wonderful. We have a home base now where we have our own studio. And so we're getting that ball rolling once again. 

ASHLEY: That's great to hear. And I think that so many of us have seen such an impact on our in-person services, things that can't be done virtually, things that can't sort of transition or weren't able to transition. And I know, Diane, that's something that you all have navigated, being a domestic violence shelter, in that some of your services have to be done in person. Can you talk a little bit about how you've been able to still reach survivors with disabilities during this time and some of the challenges you've faced? 

DIANE CLARK: Sure. Obviously, operating a domestic violence shelter is something that is done in person. And it is probably the most challenging aspect of our work and the adapting that we've done during the pandemic. We have made some first of all, one of the first things that we did was to establish a text line for our hotline, because that's the entry point for shelter. 

Also, obviously, a good bit of advocacy goes on in the hotline process as well. That was something that we had actually been planning to do as part of the disability grant. And it was accelerated because of the pandemic. 

So some of the adjustments that we have made, as most of you probably know, in many domestic violence shelters, families share rooms. There might be two, maybe even three families in larger rooms. So one of the first things that we did was to put one family per room. 

Now obviously, that has reduced the number of people in our shelter. So far we've been able to address that with shelters in neighboring communities. And sometimes we will place people in hotels, that type of accommodation. But to protect people from transmission of COVID, it was necessary to limit capacity. 

However, one of the things I think is really important to understand about the work of domestic violence agencies overall is that we do a lot of our advocacy, quote, "virtually by telephone." I mean, historically, Hubbard House actually began solely as a hotline 45 years ago this month in Jacksonville. And then we transitioned to a shelter and other services. 

So in terms of communicating with people who are not in the shelter, I think we've been able to manage that very well. Now within the shelter, obviously there's face-to-face work going on. But we have also instituted Zooming within the shelter so that a resident can meet with her case manager or an advocate via Zoom within the shelter. Face-to-face meetings are also obviously available as well. And precautions are taken, mask wearing, social distancing, limiting the duration of face-to-face meetings. 

So those are some of the things, some of the ways that we have adapted. And we had to do it very, very quickly. I think that was one of the things that was-- we had to get technology in there. People had to get cameras who didn't have cameras with their computers. So I think one of the biggest challenges was just getting everything up and running quickly. 

ASHLEY: Thanks so much, Diane. This is Ashley. We are about due for an interpreter switch. So I'm going to pause before I move on to Max. 

OK. Great. Max, we've heard from both Shanda and Diane that it seems like a lot has been changing pretty regularly, right? There's been a lot of change. Things are continuing to change. 

And it's really an ever changing landscape right now. COVID-19 just kind of has changed a lot and continues to change a lot. Can you talk about some of the challenges that people with disabilities might face in understanding and adapting to this constantly changing landscape of COVID-19? 

MAX BARROWS: Yeah. Thanks for asking that. This is an important question. 

So there are three issues I want to address. Number one, understanding information. Number two, the ever changing social rules. And number three, not getting services. 

First of all, the information coming from the medical community is not cognitively accessible. For example, the committees working on COVID at the Health Department here in Vermont have not included anyone from the disability community. From the beginning, we had to scramble to quickly rewrite COVID information into plain language. 

Basically, we have a team that goes through information sentence by sentence and rewrites the information. Then we meet with self-advocates on Zoom to focus group our plain language version to make sure it makes sense to people. For example, some of the concepts that have been confusing for people with intellectual and developmental disabilities are knowing the difference between getting a test and getting a vaccine. Another example of the confusing issue was that some people thought that getting positive test results was a good thing. 

Another challenge has been the constantly changing social rules. Like everyone else, it has been an adjustment giving up old habits and practicing social distancing. And as you know, social distancing is complicated. 

The rules may be different depending on where you live. They change based on the level of virus in your town. And there are different sets of behaviors depending on if you are at work or if you are outside. And it looks like we now need to learn a new set of social behaviors for people who are vaccinated. 

And we worry when we hear politicians talking about how things will get back to normal by the 4th of July. We understand the need to be hopeful. But we also see the need to be safe going forward. 

And my final point for this question is that we have had to learn all of this, all of this during a time when our services were discontinued. By the end of the summer, most people were getting access to some of their services only to have them stopped again right around the holidays. People with intellectual and developmental disabilities were faced with new information and new social rules to learn, and our support services were significantly reduced. So that's my answer for that question. 

ASHLEY: Thanks, Max. And I want to follow up with you. Because you were on one of our original COVID-19 sessions that we hosted last year, right around this time, where we talked about some of the challenges that people with disabilities were going to face, during the ongoing struggles that they were going to continue to face in this ongoing COVID-19 crisis. And one of the things that you talked about was the way in which people with disabilities were talked about, so the hurtful and damaging ways in which people with disabilities were talked about at the outset and now, the ways in which people with disabilities have, in some places, not everywhere, but in some places, been a little bit forgotten in vaccination prioritization. 

And you talked a little bit in that session about the lasting impact about the way that we talk about and think about people with disabilities in these conversations. And I don't know if, after a year, if there's anything you like to talk about when it comes to just the ways in which we talk about people with disabilities when we are talking about vaccination, when we are talking about going back to the way things were, or anything like that. 

MAX BARROWS: Yeah. I mean, I think I will hit on this a little bit down the road of my answers to some of the other questions, but I think that you just need to treat us as people. Because we are-- just treat us as people, because we are people. We need to be treated equally in health care, not treated as if we're not as important. And that can include some of how people with disabilities are talked about in the medical field, as well as just making sure that information is accessible for people to understand and helping us out to understand what's going on in the way we can. 

ASHLEY: Thank you so much, Max. I do want to open it up to Diane or Shanda, if you have any additional thoughts or responses to anything that Max talked about. 

Hearing none. OK. So that actually was a really helpful transition, Max. Because well, first, one of the things I wanted to do is we did post a link in the chat to The Plain Language Vaccine Guide, which I know you're going to talk about a little bit later, Max. 

But I also want to make sure that you all get the link to SARTAC website more generally. Because there's some really interesting stuff coming out of there that was created last year, that if you haven't had an opportunity to look at might be helpful for you around talking to people with intellectual and developmental disabilities about COVID in general, about precautions to take, and also some other really relevant information that is not COVID-related that might be helpful. So if one of my colleagues can help us out and just put that general-- the selfadvocacyinfo.org link in the chat for folks, that would be great. And I know that they are going to get on that. 

But in the meantime, a lot of what I've heard you all talk about is there's just been a lot of change. There's been a lot of uncertainty. There's been a lot of difficulty for survivors with disabilities during this time. 

And I know, Shanda, we had a really interesting conversation a while back about how your tribal government has really stepped up to support marginalized members of your community, people with disabilities, people experiencing poverty, people who have tested positive for COVID. I wanted to know if you could talk a little bit about how your community and your government has really stepped up. Because I think that there are some lessons learned there for other communities about best practices during times like this. 

SHANDA POITRA: Yeah. Like I said, our reservation is very poverty stricken. And so when COVID hit, it seemed like it happened so fast. And so we had to act fast. 

And luckily, our tribal government here in the Turtle Mountains were able to apply for and receive grants to get the resources that people needed, such as hand sanitizer, masks, and things of that nature. But also, while people were starting to go into quarantine, a lot of these people, some of them already did not have vehicles or different means of even finances to get resources such as groceries and things like that. And so our tribal government had developed a team of people to bring things like groceries and household items, even pet food and kitty litter and things like that you would need for the two weeks that you're being quarantined. And they would bring it to members of our tribe and just leave it on their porch, kind of knock at the door. There's no contact. 

And then they would get back in their vehicle. And then whoever's in the home can come out and grab these things. And so there was a great deal of support for not just people who were in quarantine and tested positive, but also people who were in close contact, or our elders, who are held in very high regard. People with disabilities were also held in that high regard, whereas they were brought things so that they wouldn't have to venture out on their own to get these items. 

It was also like that with the vaccinations. When that started to come out, it was our elders first, and then it went by age group, starting with elders and going down to younger and younger age groups, and also people with underlying health conditions and people with disabilities. If there were people who were unable to make it to the clinic to get their vaccinations, we have a public health department in our hospital that will reach out to these people and go to their homes or where they may be residing and provide those vaccinations for them so that, again, they won't have to venture out. 

There were care packages brought out to tribal members with things for your children, diapers, anything that you might need. Also our tribal council had began covering the Wi-Fi bills for tribal members so that they may be able to-- so our children can go to school virtually. Our school system had these little tablets, these little Chromebooks which they provided every student in the schools to bring home, of their own. And the tribal council was paying for the Wi-Fi access so that children were able to attend school, people were able to work from home, and things like that. 

So our community really-- I mean, we really stepped up. And I'm so proud to be from this community where we have a tribal council that really cares deeply about our people and makes the tribal members a priority, especially those who are unable to be able to access resources on their own easily. 

ASHLEY: And I wanted to open it up to Diane and Max, if you have anything that you would like to respond to in what Shanda said. I know that that amount of support is different than what other communities have experienced. So I don't know if you have anything that you would like to add on that? 

DIANE CLARK: Well, I would just like to add that the remarks that I made earlier about the challenges that we have faced at Hubbard House really apply to all of the survivors we serve. But survivors with disabilities have added-- I mean, there are added concerns about their being able to access services, hear about services. Because often they are already isolated, the isolation that has occurred from various lockdowns and quarantines, especially because many people fall into the category of having to take extra precautions because of underlying conditions or perhaps age. 

So I think that's one of the things that we have struggled with where it's really important to connect with community partners. For example, we're a domestic violence agency. So we work with the Center for Independent Living and other agencies that serve people with disabilities. I think that holistic approach is always important. But it's been especially important during the pandemic. 

ASHLEY: Thanks, Diane. That's really helpful. Again, just this idea of community taking care of community members and ways in which we can collectively come together to support people. Max, I just want to open it up to you to see if you have any thoughts. You don't have to provide anything. But if you have anything you'd like to share here, feel free. 

MAX BARROWS: I could just say briefly that I have seen people with disabilities rally around each other and step up during this pandemic, you know, with advocacy and voicing their concerns about what's going on in the world, making sure that we are as much of a priority as everyone else, and also making sure that we stay connected during this time of uncertainty. 

ASHLEY: And Max, I think that you brought up a great point, which is people with disabilities sort of supporting each other. We've seen a lot of mutual aid organizations popping up across the country, really focusing on people with disabilities supporting other people with disabilities. Things like going out and buying groceries for people, providing them with basic necessities, some of the stuff that Shanda talked about her government providing, we've seen a lot of community-based action and support around that as well. I do want to take just a brief moment to do an interpreter switch. 

OK. I think we're good to go. OK. 

So I want I want to continue talking a little bit about this, the ways in which we support each other and support survivors with disabilities during this time and the ways in which we've done it and the ways in which we are going to continue. So moving forward, to think about how we can best serve survivors with disabilities. And Max, I know you talked a lot about people with disabilities supporting each other. And I know that you have been working with peer-to-peer groups over the course of COVID and also before that. I don't know if you want to talk at all about what you all have done together and the ways in which you've been you've been able to support each other in those peer-to-peer groups during COVID-19? 

MAX BARROWS: Yes. So we have a three-prong approach. We started out holding virtual meetings for, number one, our existing peer group, number two, a meeting once a week for self-advocates in Vermont, and number three, two meetings a week for self-advocates from across the country. 

We reached out to people directly by calling and texting through their providers. And we announced meetings on Facebook and on our website. Self-advocates were eager to help to pass the word. And there was a scramble to access money to buy devices for people and to make sure they have internet access. The early stimulus checks came in handy. 

Let's see. The state wide and national meetings were popular because they have become a great place to meet, still are. Our national meetings always have at least 70 people and often more than 100. 

And in addition to being a place to socialize, they were an essential way to get out information that people could understand. The topics we discussed came from people directly. We would work in small groups to find out what people did not understand and then address those issues in our next meeting. 

One great outcome is that, for the first time, people with intellectual and developmental disabilities who are working professional advocacy jobs across the country, not in regular contact with each other. So the people with intellectual and developmental disabilities that work for disability organizations or have government advocacy jobs were meeting all the time. 

The regular meetings were important places to discuss the murder of George Floyd and discuss addressing racism within the self-advocacy movement. It has been a wonderful opportunity for us to learn from each other. New Yorkers and self-advocates from West Virginia have taught sessions about advocating to increase transportation. Massachusetts and Illinois and Vermont have shared resources on healthy relationships, coming out, and responding to abuse. Colorado and Missouri presented their work on students with disabilities directing their own IEPs and addressing the school-to-prison pipeline. 

It has been one year. And we continue to meet two times a week. Therefore, the list of topics being addressed is extensive. And the beauty of it is that all sessions are presented by self-advocates, people with intellectual and developmental disabilities. And IEP, for those who forgot what it stands for, is Individualized Education Plan. 

ASHLEY: Wow, Max. This is Ashley. It sounds like you are doing so much stuff. And it sounds like you all have really been able to find a bright spot in a lot of this, which is people who have never been able to create sort of coordinated responses, or really spend time on a regular basis learning from each other now have had the opportunity to really do that and dedicate space to that. So that sounds like such a great opportunity for all of you. 

MAX BARROWS: Mhm. 

ASHLEY: I do wonder, Max, if you could talk a little bit about how you all, maybe in those groups or otherwise, have talked about vaccination and talked about testing and some of the issues that have come up and how you've been able to talk about that with other self-advocates and people with disabilities. 

MAX BARROWS: Well, I can say this when it comes to vaccinations. First of all, I will say that a new study in The New England Journal of Medicine found that having intellectual and developmental disabilities was the strongest independent risk factor for presenting with a COVID-19 diagnosis and the strongest independent factor, other than age, for COVID-19 mortality. And this is not the only study pointing out how important it is for people with intellectual and developmental disabilities to get the information we need to avoid getting COVID. 

For the disability rights movement, "nothing about us without us" is one of our most important values. Unfortunately, once the pandemic hit, any good habits people had to include us seem to be easily forgotten. Government entities charged with serving people with disabilities moved-- they moved forward to address COVID without us. So on a system level, people were left out. And we were also left out on a personal level, because provider agencies stopped working and many of us lost services. We had to rely on natural supports and our peer networks to get information. 

Our response has been to create more than 13 booklets about COVID-19, written in plain language. We begin by just explaining what it is and what to do if you feel sick. We put together a glossary using easy read language to define the different words used in the medical field about COVID. 

We have booklets about going back to work, which includes a decision tree to use to determine if it is safe for you to be in public. We provided plain language information about getting unemployment benefits and what to do if you have not received your stimulus check. Let's see. We also needed to get the word out about how all of this extra money will and will not impact a person's benefits. 

Let's see. What else did we do? We made a video and a booklet to explain how someone can advocate, using the Americans with Disabilities Act, to make sure they have a supporter with them when in the hospital or going to a doctor's office. We just put together a handout about getting the vaccine. 

Now all of this information is shared by other partners. Most of it has been translated into-- I believe, yes, Spanish. And our basic COVID booklet was translated into 11 different languages. So that's what we've been up to. 

ASHLEY: Max, this is Ashley. That is just an incredible amount of resources. And I do want to encourage our audience, if you have not engaged with any of these resources, even if you don't work with people with disabilities, materials in plain language are helpful for everyone, particularly around topics that involve medical care, that involve advocating for yourself. 

Even with folks that maybe can't read the language, a lot of these resources, some of them are an easy read and have a lot of pictures. And they're really helpful resources for everyone, people who have experienced trauma, a lot of different folks. So, again, most of those resources are on the SARTAC website. I know one of my colleagues just posted the vaccine resource specifically, kind of recognizing where we are in the cycle of COVID-related events, knowing that many of our communities have really shifted to thinking about vaccination. But Max, I just can't say enough good stuff about the work that has come out of your self-advocacy groups and the things that you all have been doing. 

And with that, I kind of want to turn to Diane. Because I know that you have shifted a lot of your services to be virtual during this time, as Max has talked a lot about all of the things that they've accomplished being virtual. I wanted to talk to you a little bit about how you've shifted to virtual advocacy, and what that transition has looked like, and how you feel about it, how effective it's been, and whether you plan on continuing it. 

DIANE CLARK: We definitely plan on continuing it. And I think, basically, it's been considered a success. Of course, there are drawbacks. But particularly with people with disabilities, we serve a significant number of people with physical disabilities, some of which have been acquired as a result of the abuse. And add to that other responsibilities, like child care and transportation. 

It turns out that many of our outreach participants, survivors, many of them actually prefer virtual advocacy. And so that's definitely something that we're going to continue. Obviously, it does have its limits. And it has challenges. 

One of the things that we do-- I mean, that we've always done-- but we do it even more, I mean, to a greater extent now, is we do a specific communications safety plan that addresses when it is safe to communicate, how it is safe to communicate. Sometimes we're on the phone with people. So we're not visually interacting with them. Although most of the virtual advocacy has been done via Zoom. So it's really important, that safety aspect, because the perpetrator of abuse, they very often may be still living with that person if the person has a disability. 

We also work a good bit with older survivors who may just not have as much freedom to go to a separate room to make a call or send a text. I was involved in one case, I was consulting on one case where the woman's partner was just following her everywhere, from room to room to room. And she literally would have to try to hide herself in the bathroom in order to talk to an advocate. So I think on balance, we see it as a positive thing, one of the things that we're going to continue doing going forward, but recognizing the limitations and doing our best to make sure that all the communication is done safely. 

INTERPRETER: Sorry, Ashley. You're muted. 

ASHLEY: Thank you. See, even happens to me. It happens to all of us. 

[LAUGHTER] 

And I do a lot of these. And I still do that. The joys of Zoom is what I call it, right? It's that you're muted. We like to say we should have a Zoom bingo so that someone can collect bingo when all these things happen. 

DIANE CLARK: Dog barking. [INAUDIBLE]. 

ASHLEY: Exactly. Dog barking is the other big one that we have surprisingly not had today yet. But so it's really interesting to hear that you've been able to shift virtually. I know you talked a little bit about your in-person services and the ways in which you've still been able to safely offer those throughout this. I don't know if you have anything to add in addition to what you already talked about when it comes to in-person services? 

DIANE CLARK: Well, one thing I did want to add is that we increased pay for shelter staff during the height of the pandemic. And I think that is a really, really important step that we took. Because needless to say, they were putting themselves at risk to continue to do the work. And we felt that they should be compensated to basically some type of extra pay to account for that. So I think that is really important. 

And of course, other steps that are taken to protect staff, because you can't provide the services if staff doesn't feel safe in doing the work. And we've had really good cooperation. We try to put things, as much as possible, in terms of we're asking you as opposed to we're telling you to our survivors. It's an empowerment-based advocacy. And so we try to have as few rules as possible. And I think we've managed fairly well to have a lot of cooperation from the people that we serve without making too many prescriptive restrictions. 

ASHLEY: Thanks, Diane. This is Ashley, again. Before we move towards looking to the future, is there anything that any of you want to share about this theme of supporting people with disabilities and survivors with disabilities during this time, before we start looking towards the future currently or in the past, things that you want to share about supporting people? No one? 

MAX BARROWS: Can you repeat that again? I'm sorry. 

ASHLEY: I just wanted to give you an opportunity, Max, if you had anything to share, any final thoughts on supporting people before we move to looking to the future. It's kind of just an open question follow up if anyone has anything that they want to add. I'm not hearing anything, so I'm going to move forward. 

MAX BARROWS: Well, actually-- 

ASHLEY: Oh, go ahead, Max. 

MAX BARROWS: I could say this. Well, I'll say a little bit of it. 2020, first of all, before this pandemic even hit, like, you can imagine what a shock it was, how we felt when COVID hit and we learned that some states were establishing rules that said people with disabilities should be put in the back of the line when it comes to getting access to a ventilator and other lifesaving treatment. You know? 

I'll be honest. The trust factor has been broken with a new generation of people with disabilities. And this is having a ripple effect across lots of relationships now. 

I'm not saying that life was perfect before the pandemic. But people with disabilities were and are the poorest people in our country. Even before COVID, only 44% of adults with disabilities with IDD, age 21 through 64 were working. And this is compared to only 83% of working-aged adults with disabilities who are in the labor force. 

This is my brain. And I just forgot the last part of your open-ended question. However, I know that there's probably other questions that you were going to ask which could actually hit on the further I go with this answer, Ashley. 

ASHLEY: This is Ashley. Max, I really appreciate you sort of uplifting this recognition of the harm that has been done and things that are going to take time to heal. And I think that that is very true for a lot of people. I think we also are looking at a generation of people who are experiencing trauma and are experiencing increased mental health disabilities and other types of impact from COVID. 

And that brings me to Diane for a second, to think about the ways in which COVID-19 has created additional trauma in the lives of survivors with disabilities and how we can start addressing that sort of long term impact that Max is talking about and that others might face. 

DIANE CLARK: Well, I think, just going back to what I was saying about the isolation, during the period of the pandemic, we have also been involved in a project at Hubbard House, how to improve our trauma-informed services. So we're looking in a global sense of the agency and our community partners of what trauma is and how we don't replicate traumatic experiences in any way for the people that we serve. And I think that one of the things that has been missing during the pandemic that is really a very important part of what we do is support groups, because we provide support groups both in the shelter and in outreach. And because of the pandemic, that is something that we have suspended for health reasons. And that impacts all survivors we serve, obviously including survivors with disabilities. 

But one of the things that we do know from this work is that survivors draw a tremendous amount of support from each other and connecting with other people who have experienced similar trauma or trauma that they can identify with really helps people feel not alone it really helps decrease shame that some survivors might feel because of what they have been through. And so I think it's really difficult to replicate, to do a support group in a virtual setting for a variety of reasons. And so we haven't been able to do that. And I think that's one of the biggest issues that we've had in the pandemic. And we're all really looking forward to being able to resume those. Because we know that it's one of the most important aspects of survivors healing. 

ASHLEY: Thank you, Diane. I'm going to pause for an interpreter switch. 

And I know on this topic of starting things back up and what's going to happen, I know, Shanda, that you are also looking forward to being able to resume your typical services for survivors with disabilities and other people in your community. What are your plans moving forward as your community reaches closer and closer to full vaccination? 

SHANDA POITRA: Well, we plan to pick back up with our training and the workshops that we can provide [? without ?] our mentors. Now that we have our home base in town, we're able to open it up to workshops of different age groups and to people with disabilities. But with people with disabilities, we still aim to keep it the same as far as going to them, bringing our services up to them so that we can be in their element. Just to provide that comfort level for them to be able to practice some of the verbal and physical skills that we teach them in self-defense. And a lot of the times, their caregivers also take part in our services as well and do the program along with their clients. 

One thing that we will work on as well is getting on that virtual bandwagon as far as teaching things online. I think it's still important to incorporate that into our program, even though we haven't been able to thus far. But we have been speaking with other tribal nations throughout the United States who want access to our services as well. And with the social distancing, things of that nature, where we're thinking of creating videos of some of our techniques and some of the scenarios that we teach and just kind of talking people through it while we're showing videos in Zoom and things like that so that we can reach a wider audience through the virtual technology. And so we will be incorporating that just to become more accessible to people who can't get to us. 

Also our reservation, Native Americans in general, Native American reservations are sovereign nations, which means that we have our own little government. We have our own council and laws and things that we abide by. And during COVID, while the rest of our state had let go of their mask mandates and some of their social distancing precautions, our nation had stuck with those. 

And so we still today, even with the many vaccinations taking place, we still have a mask mandate. We still have social distancing requirements. And so we will go forward with respect to that, but also be able to open our doors to, like Diane said, to have that support system of trauma survivors having each other and being able to lean on each other. 

Because we've seen so much of that where we have our talking circles and people are more likely to open up about their own trauma when they have that support of other people. And so that's what's really lacking with this whole COVID thing with our program. So we can't wait to get back and be able to share that solidarity with one another once again. 

ASHLEY: And I know that there are a lot of people out there who are waiting for that moment as well, when we can be with each other safely in spaces to support each other in these moments. Which is part of why we wanted to do this session today, is to just recognize that the gravity of the past year and the feelings that people are processing, all of us are processing around the fact that it has been so long since many people have been able to share spaces with their support systems for various reasons. This is a question that came into the chat. But what Diane and Shanda both shared sort of brings me to it. 

And I want to field this question to Max. Someone in the audience asked about how it feels to see-- before COVID hit, the world sort of denied people with disabilities access to virtual communication sometimes. They said you had to do things in person. 

And now, suddenly, it's open to everyone. People have moved things virtually. There's more access to virtual supports and services and activities than there ever was. How does that make people with disabilities feel? And what message does it send? 

MAX BARROWS: I can answer this. So having virtual access available to us is empowering. But we shouldn't stop there. We need equity. We deserve to have the same accessibility that most others feel. 

We want the opportunity to have a chance to give back to the world. And we want to show the world that we have a lot to offer. I will also say this, that this kind of ties into one of the questions that I was going to get asked on this panel. 

People have become more savvy with their tablets, phones, and computers while staying connected virtually. People with intellectual and developmental disabilities have gotten better at meeting virtually. We are more connected with each other and more present at our town halls being held by policymakers. 

More people have stepped into leadership roles in the disability rights movement. For some people, the Zoom format has bolstered their confidence. It seems to be easier to express oneself and less intimidating than speaking in person in front of a large group of people. 

People got tired of waiting for providers to start services again. So they went back to work without their job coach. And we are pleased to report that many people found out they could work independently. 

When it comes to just changes in the world, we have learned how to do virtual medical appointments. This will help in the future when we are faced with transportation barriers. People who live on their own are now getting the support they need virtually. This has increased their independent living skills. 

With the help of [? layers, ?] we have set a firm precedent for people getting the accommodations they need while they are in the hospital. Doctors and nurses are getting better at using alternative ways of communication-- alternative ways of communication. Boy, my mouth is getting tired. 

And we now have even more evidence for why we need to close-- I'll say this-- we now have more evidence-- I just want to point this out-- that we have more evidence to close segregated settings for people with disabilities. So many people living in group homes and nursing homes have died. We have renewed our demands for people to have individualized services in the community. 

Congregate settings are not safe and must be discontinued. I know that has nothing to do with devices and all that. However, it is something that I wanted to point out about what we've learned about this pandemic, to just clump everything up together. But anyway, if that answers the questions in the Q&A box, that's what I have to say about it. 

ASHLEY: Max, this is Ashley. I really appreciate that. And you saying, let's continue to keep the virtual options open. Like Diane was talking about keeping some of her virtual advocacy going at Hubbard House. Shanda talked about taking some of their programming to a virtual platform so that more people can interact with it. 

And what I hear you saying is just the more access we have, the better. So even when we start to go back to in-person stuff, can we also maintain virtual access for people that it works out better for. 

MAX BARROWS: Yes. 

ASHLEY: I really appreciate that. Because I think that that is one of the ways in which we move forward out of this. And we have about 15 minutes left. So I do want to open it up right now to questions from the audience that might be bubbling at this point, or comments from the audience about what you all have been doing, or your reactions to this session, or anything that you would like to share with our panelists. 

I do want to open it up at this point for that. But I do want to ask one final question of our panelists today, which is what are your hopes for survivors with disabilities as we move toward whatever this new normal, or normalcy, or reopening looks like in the coming months? What are your hopes for survivors with disabilities? And I'll start with Diane. 

DIANE CLARK: Well, following on what Max said, I think, hopefully, we've learned that we can do a type of universal design for communication. We've learned that we can do digital signatures. We can do recorded consents for certain types of things that in the past we required written consent. 

Also I'd like to point out, too, that Hubbard House-- like many domestic violence centers, it depends a lot on the state-- we are under regulation by a department of the state. And so we've worked with them, there's certain rules and regulations that we've needed to adapt in order to continue our work. And so I see it that way, a more universal approach that encompasses everyone. 

ASHLEY: Thanks, Diane. Shanda? 

SHANDA POITRA: I just hope that the participants of our program can get the skills that we're teaching for self-advocacy and healthy communication and to be able to use those in what we now consider normal. I think about Max, what he said about how it wasn't very inclusive for people with disabilities, this whole shift toward this new way of life in general, social distancing and the laws and how we communicate and things like that. And I guess I just hope that, if it is becoming the new normal then, I would hope that people with disabilities are getting the services that they need and being able to understand how to communicate using these tools and technology. 

ASHLEY: Thanks, Shanda. Max? 

MAX BARROWS: So I would say that my hope is that the pandemic has taught more lessons on how health disparities impact people with disabilities. Just like people of color, there is now a stronger case for addressing systemic problems with ableism and racism in our health care system. It has been revealed how people with disabilities and survivors alike are slipping through the cracks and how easy it was for policies to be established that pushed us to the back of the line. 

And it seems now that our collective voices are saying loudly that we deserve the same treatment as every other person. We hope the data collected during this pandemic about the risks experienced by people with intellectual and developmental disabilities are not forgotten. One positive outcome is that many people with disabilities are seeing how resilient we are. Even though we lost services and supports, we kept working. We found ways to tap into natural support when living on our own. 

We must be afforded the same opportunities as everyone else and also just the dignity of risk. That was something that was lost during the pandemic. And we just need the same opportunities to make mistakes as everyone else. That's what dignity of risk means. It means allowing us to fail, the best way for us to learn. 

ASHLEY: Thank you to all three of our panelists today. I'm really glad we sort of left it with what you just said, Max. Because I think that really encapsulated a lot of what we're trying to say. There have been a few comments that have been coming in about what other people have learned. 

If you want to share what you have learned from the past year or anything that you feel would be helpful to share with our audience, I would love to hear it. Someone said that they have learned not to be ashamed to reach out for help and to know when to reach out and to love yourself and to remember that you're not alone and that you've been through things before and you can get through it again. And I think that's just really a positive, uplifting message as we end today's session. 

Another person said that they have kind of learned to really remember and reflect that all communities have people with disabilities. And we really have to think about sort of race and culture contextually. And that's something that they've learned. 

I'm just looking through. We got a couple of specific questions about access in the domestic violence shelter context. I'm seeing at least one question come through the Q&A on that. I think that's something that we would probably want to answer via email for today's session. Just because I think there's a lot of detail that would go into answering that. So Sue, I will connect you to myself and Diane to address the question that you've put in the Q&A today. 

But I think that there's been a lot coming up about the ways in which we can be resilient and adapt to all kinds of situations that we didn't know we were capable of. And the resilience of survivors with disabilities continuing to uplift that in the work that we do. Are there any final thoughts from our panelists today? 

MAX BARROWS: Sure. I can say a final thought. 

ASHLEY: Go ahead, Max. 

MAX BARROWS: We hope to return to the days of having high expectations. We need to try things out for ourselves. We want to be the ones who direct our lives. 

We appreciate all of the help we got from our families and friends to get by during COVID. But getting back to normal means getting control of our lives back. In many ways, we have learned that from all of our mistakes we have made in the past year. And we have learned from them. 

We have adopted a higher degree of independence. I'm happy to report that peer connections have become stronger. We have permanently put in place regular ways of communicating with each other from all across the country. And we continue to learn about the expertise of our fellow self-advocates and who we can call on to address so many issues. 

So my message is people with disabilities give more than we take, or give as much as we take. And our place in the community should be fully realized. And we should be given new opportunities to contribute to society. You can count on us. You just need to give us a chance. 

ASHLEY: Thanks, Max. Diane or Shanda? Nothing from Shanda. Diane, any final thoughts from you? 

DIANE CLARK: Basically, I would just like to echo what Max said. 

ASHLEY: Max, I think you wrapped it up good for all of us. You did a better job than any of us could in wrapping it up. I want to say a big thank you to Max and Shanda and Diane for being here today. I know that it's a lot to ask you to take time out of your very busy lives. 

Diane's working in a domestic violence shelter. Shanda is doing vaccination clinics, like, all of the time. Max is doing all of his peer support work. There's a lot going on for all of you all. So I just want to say thank you so much for taking the time to be a part of this today and for sharing your experiences and feelings about the past year. 

And I want to say thank you to our audience. I know that it has been a challenging time for all of us and that there is a real true thing called Zoom fatigue. There is a real true thing called COVID fatigue. And a lot of you still showed up today to be a part of this experience with us and to reflect on the past year and how we move forward. 

And we very much appreciate it here at [? CVS. ?] And we appreciate each and every one of you. And thank you so much. Thank you to our interpreters and our captionists as well. And I hope everyone has a great afternoon.