IL-NET Training and Technical Assistance Center for Independent Living Understanding the Role of the Independent Living (IL) Network Before, During and After a Disaster Presented by Ed Ahern, Jim House, Sarah Lauderville, Beth Meyer, Shaylin Sluzalis, German Parodi March 27, 2024 MARY KATE welcome everyone, I hope folks are having a good day we will get started momentarily as folks are joining. In another couple seconds I will go into housekeeping. Hi everyone, my name is Mary Kate Wells, I am the program director at NICL, the national Council and independent living and I support the IL network for logistics and these webinars you are attending. Today as a webinar is understanding the role of independent living network before, during and after a disaster. We had over 400 folks registered for this webinar so it seems to be a popular one were folks are craving information. Today's presentation is brought to you by the administration for community living at the US Department of Health and Human Services, in conjunction with the IL-NET. IL-NET is operated by ILRU in common nation with N ICL, The National Council on Infinite Living , in the logos of those are on the screen to give you a brief visual description of myself my pronouns are she/her I am a wide almost 30-year-old female wearing a black and gray sweater. And wearing headphones. Just a few housekeeping details, captions are availed today for the webinar, you can click show subtitle in your zoom menubar to turn them on, we also have captions running via AI media, the URL is too long to say out loud so we will put that in the chat. Using this link you will be able to enlarge the font, change color, contrast of the captioning. ASL interpreters are also present today and should always be visible as representing in gallery view. Let us know if you cannot see the ASL interpreters, and we also have Spanish interpretation translation available and in order to access that you can go to your zoom bar and choose the language that you would like to hear the presentation in. And I just got a message in the chat that audio – before I continue >> If anybody else is listening in and cannot hear can you put that in the chat for us. It looks like – I will reach out to the person MARY KATE we will read all the content on the slides and any questions on the chat in out loud so that folks calling in or who cannot see the visual content. Public chat is off but you are able to chat the host and panelists, we just ask you reserve the chat for technical support only and please do not use the chat to submit questions to the panelists. Too big questions, they will be saved until the end of the webinar, you are welcome to submit questions throughout the webinar and if a question is relevant on the current site it might be answered. There are a few easy ways to submit questions and if you are in Zoom you can type your question in the Zoom Q&A tab or you can email me at mary-kate@NICL.org, and if you are on the phone today you may press and *-nine to indicate you have a question if you're using a touchtone phone we ask you to limit your question to 30 seconds. I will ask at the end of the webinar if you all would consider filling out our evaluation form, we greatly appreciate any and all feedback and that will be put in the chat as well as pop up on the screen. Without further ado I will ask Ed Ahearn to turn his camera on, Ed is the aging and Disability Program coordinator in the office of infinite living and he is going to kickoff our conversation today about, before during and after a disaster event. ED AHERN good morning, good afternoon! I am Ed Ahern a 60-ish-year-old man with brown hair and a brown and gray beard and glasses and a striped shirt. I am excited to be here today. A little bit about me, I am a former CIL consumer turned volunteer turned board member turned skills trainer and in the end turned Executive Director. Following my many years of CIL work I spent seven years as a disability integration specialist at FEMA where I saw the disparity people with disabilities were facing following a disaster. I've been deployed more than 20 times. Across ACL is this strong commitment to supporting networks before during and after a disaster. Here in the office of independent living programs we are ongoing supporting our CIL networks preparing for a in responding to a disaster emergency or public health declaration. This FAQ we will talk about today, this webinar, they are just one way that we are offering support and throughout the webinar you will hear about lots of ways that there is a sport out there. I'm joined today by the coexecutive directors of the partnership for inclusive disaster strategy, since joining ACL in 2022 I have seen strong support that the partnership has provided to IL network, to partners as well as the knowledge and leadership they bring to disaster and the disability conversation. German and Shaylin would you like to introduce yourself? SHAYLIN: Hi everyone we are the coexecutive directors of the partnership for inclusive disaster strategies, and we go by The Partnership, in Short We Are the Nations Disability and Disaster Hub led by for people with disabilities before during and after disasters in and we are looking for to the discretion GERMAN: I am a brown skin Puerto Rican man and a use he/ pronouns SHAYLIN: I'm a white woman with a brown jacket and behind us is a desk with a Mandela tapestry behind us and I he's she/her pronouns ED AHERN: We will also be joined today by members of the community of the IL committee and we will let them introduce themselves during that portion but we are excited and very excited. Over the past two years we have seen increases in the number and frequency of disasters. With CIL and SILC, to examples we see the ongoing Maui recovery and public health and we are also seeing lots of centers that are still playing a very important role in the public health and COVID work that is still going on including information on testing, on vaccinations. We will start with the webinar with the discussion of the FAQ and then we will be followed by our panel and before we move on to a discussion specifically around our goals and lastly we will look forward to hearing about your experiences and answering questions or providing input on questions or feedback that you might have. Before I start I think it is important, and this is a lesson I have to learn, I frequently moving forward fast, fast, and I do not take the time to say thank you. The FAQ that we released last month was really a labor of love. We have been working on it inside of ACL and the office of independent living programs for some time but I have to thank everyone who provided feedback and guidance for us throughout this. What we have seen, you had questions, you are candid, you allowed us to learn from your experiences. We especially appreciate those who engage with us in real time during active disasters. We know how your time is busy during that, so we really do appreciate those folks, the folks in Florida during hurricanes, a few years ago we work closely with them in Hawaii and throughout the country. Today we will discuss three of the FAQs, they are a great FAQ and if you have not already had a chance to review them take a look. It really does include a lot of good information but today we will focus on this portion and focus on three questions that we think will be useful for everyone. We know that everyone is at different levels of where they go. I will jump right into this so let's go to the next slide. What role does the state plan for independent living and SILC and CILs play in emergency response, that is kind of a loaded question. Every community is different, so I will go right to Shaylin, what are some of things that SILC and CILs have been doing to Reese to prepare for response disaster SHAYLIN: People with disabilities our 2 to 4 times more likely to die or be injured in disasters than nondisabled people. That is a disproportionate impact we face before during and after disasters and emergencies. As we know people with disability make up 27% of our US population, and disasters are increasing in frequency and intensity which is driving pieces of our conversation today. To the first question that we are addressing here, what role does the state plan for independent living and SILC and CIL plan emergency preparedness one is to look at your state plan on in a minute living as a place to identify and start working on your commitment in this major area that certainly impacts all aspects of our independent living networks so we will get into some other examples throughout the day but to look at this as a way to identify that you are committed and responding to them preparing for and recovering from disasters and emergencies as an IL network. We have seen this is a way for CIL and SILCs to be assets in their disaster response and preparedness and recovery in the community's and we've also seen as a role that SILCs CILs play as a convenient to bring key stakeholders together when preparing for responding to and recovering from disasters and emergencies. You will hear from Beth Meyer from Florida state in different living counsel where she often especially in Florida and other Herrick impacted areas come together as a see hurricanes approaching and bring key CILs in areas together and key stakeholders like Red Cross another first responders to get to the same tables to address this problem to identify solutions and work on them together. We have seen similarly CILs do similar work in bringing together local stakeholders in your localized communities and other partners that help you meet the needs of the disability community throughout disasters. We've also seen in a lot of different examples and ways that we will touch upon today is ways that centers for independent living have acted as that first line response meeting the new immediate needs of a disaster and disability impacted community with things like replacing durable medical commit or assistive technology in providing information and referral services and information around the available disaster services in your community, providing that individual and of course systemic advocacy on disability rights in the context of that immediate disaster and what is happening on an individual level or systemically in the response mechanisms. And providing that peer support to local communities and working as transition people to institutions before during and after disasters. Those sound like your five core services and we will touch upon those, an emergency aspect into our core services and aspects that we do. ED AHERN: I want to add onto that, keep in mind your community is your community, your impacted by certain types of disasters, so what you do in your area may be completely different so don't feel like you need to fit in. You are the masters of your community, you have the best pulse of it so just feel free to go with your blow. What types of federally declared disasters or emergencies should CILs and SILCs consider when developing emergency operations plans or goals within the SPIL? When we talk about disasters, Shaylin will talk in a minute about federal disasters but one of the things I want to talk about is, disasters are not all hurricanes coming in and wrecking the coast or wildfires burning half the state. Emergencies and disasters are local soy school shooting, a dam breach, post of things a train derailment, are all things that may not rise to a level I are certainly an impact on the local community so back to taking an assessment of your area and what you are concerned with the needs of your community are, those are some of the ways that you can look at what you should be involved in. SHAYLIN: I will add a resource in the chat from FEMA which talks about how a disaster gets declared, and what we mean when we say the words federally declared disaster as you see it is mentioned a number of times throughout the FAQ. In short we really want to emphasize that a declared disaster really means that the local community and local government agencies have reached or exceeded the capacity to respond and are requesting a support and assistance from the federal government. That is where you see the president declaring a major disaster or different localities after an event. It can take some time for that process to take place and be declared, after an actual disaster occurs due to risk assessments and other types of assessments that have to occur for that declaration to happen. But as Ed said, these are all disasters they can really get to this point of a federally declared disaster if the local capacity is exceeded their resources and needing support from federal government. As Ed said, local response is local. Disasters are very localized and that is why it is important to be connected with your local emergency management agency and no those key stakeholders to work together and we will get into more of that soon GERMAN: Sometimes when it is that it is done not meet the level IV federally declared disaster it is important for you to if you think there is enough distraction, or need, to communicate with your emergency management agency and oftentimes that is after declared days after and you see support starting to go in. Hurricanes, wildfires are good examples, however last week there was a federal declared disaster issued for New Hampshire, rains in December and January, and just last week was declared a disaster. It is important to track the impacts in the disability community. SHAYLIN: I'm sure Ed would agree with us, overall you do not need a federally declared disaster to respond to your community's needs or support your committee so any disaster localized is important that you are involved in reaching out to your local community. ED AHERN Let's move to question three because these questions are important we will have discussions, but we think you will really find benefit from your colleagues who have experienced this. This is the number one question we get, our CIL is new to engaging a disaster preparedness response or discovery, where do we start? You start where you think you should come you talk to people, start talking about what do they need? What does your committee need and what is a historic look at how your community has fared during disaster? Lots of ways but some simple ways a couple of first steps, Shaylin? SHAYLIN: First and foremost, having those relationships with your local emergency management agency can really make a difference and one thing I have learned in a know you can relate to in different works you have done within your centers for independent living is the importance of those personal relationships with the people you know at those agencies. In making sure you have those relationships and are nurturing them so inviting them to your tables and events and vice versa, inviting yourself to their events or attending things that are happening locally within your local emergency management agency. Often times, in a role we can play as CILs is supporting those entities, creating task force or committees focused on people with disabilities in disasters and emergencies, as another example. Some other places to start out, when a disaster occurs reaching out to your local community, contacting your consumers and checking in and seeing that they are safe and if they need support with wings like evacuation, food, or water, and integrating disaster preparedness activities into your core services. Things like, when you are conducting IL skills training and cooking classes for Jebel, integrating what you could eat or how to prepare food when a power outage has occurred. that helping people think through and write out what their plan to be in certain types of disasters and who their support network is, making sure folks have copies of their essential documents, and having a list of resources and information to share in a disaster or an emergency through your INR support and also using our advocacy skills to support people with disabilities to live independently and advocating for disability rights on a systemic level. ED AHERN: As you can see, these questions on our FAQ cover a broad range of things. We can spend all day talking about it and frankly we would love to. But we want to move on to things, we will have ongoing discussions about these FAQs, there's lots of ways to get involved, you will hear more about them but what I would like to do now is shift from the FAQ and I want to begin to start to hear from our panelists. Shaylin, SHAYLIN: Thank you and to Jim and Beth and Sarah who were joining us today to share more about their experience and workaround disasters and emergencies through their statewide Independent living Council or center for independent living. We are excited to start off with Jim House from Washington state, independent living Council to talk more and share about the importance of SILCs in planning in the state. JIM HOUSE Hello! I want to make sure the interpreter can see me clearly – hello everyone, my name is Jim House. I the disability integration manager and for the coalition on inclusive emergency planning. CIEP. My visual description is I have glasses on, a white beard, gray hair. I was involved in northern Virginia, with an independent living center there and I transferred to Washington state where I dealt with accessibility and technology and other ways JENNY: Can I interrupt? It is hard to hear you, Antonio. ANTONIO Hold on one second let me make sure Jim is clear what is happening >> Can you hear me okay? ANTONIO Is this better? What about now? Okay >> Thanks guys JIM HOUSE I will go back! I will start from the top, I am Jim House, I the disability integration manager for the coalition on coalition immersive planning, a statewide advisory group and is connected to emergency planning and accessibility, functional needs, my pronouns are he/him and my visual description is I have glasses on, a white beard and gray hair and I have a dark shirt, button-down shirt. I used to work for the independent living center located in Northern Virginia, near Washington DC, and then I transferred to an advocacy organization, TDI, working with telephone access for the deaf and hard of hearing. It also advocated with the FCC in regards to communications access services dealing with captioning as well as emergency communications like 911 and information would be shared as an alert about disasters around the country and I worked in that division as well. From there I moved to Washington state as a disability advocate group in Seattle, I work with that group and that is when I also started working with CIEP. One key thing about independent living centers is people with disability have skill sets, we want to keep that in mind. I worked with the Washington State Independent living center counsel as an advocate and people who were on the panel, government appointed, 90% of them, have a disability. The Council has developed a state planning for independent living centers, also called SPIL, to be in compliance with the larger role of the CIEP, the coalition on inclusive emergency planning. That organization plays a major role in local communities, the CIEP meets monthly you via zoom, fully accessible providing sign language interpreting services and captioning and it is about 30 people joining every month. Our discussions are related to coordination, councilmembers advocating, advocacy with tribal organizations as well. And a variety of different agencies and there are usually community-based organizations also part of the stakeholders for the CIEP and other independent living centers. We have four independent living centers. And we serve 21/93 counties, we provide five services. The coordination for the inclusion on emergency planning in Washington state for independently centers started about 10 years ago. There is a discussion that started one day before the worst landslide event that hit a town called Oso in Washington, 33 people died from that event. And it wiped out whole communities there. It showed a lot of access and functional needs were not being met in general, based on what we observed during this emergency so we needed a group to really do a deep dive into what was going on around access and functional needs. Statewide disability network was involved in blue sky planning development and coordination. It was stood up during the disaster recovery and we brought skills that were necessary for dealing with and training for dealing with recovery after such a disaster. And with people who have disabilities using the idea, not for us, without us. And also statutes that applied to emergency responses and we learned from a lot of other different disasters that occurred, wildfires, and a variety of other natural disasters that occurred around the country to apply successful ASN access and function leads responses to things like wildfires, and particularly for instance Spokane Washington we applied what we learned to that situation so we have a 360 approach for the CMIST people who need access and have functional needs. It may not necessarily have a disability but they have a variety of groups for instance of people without homes or people who have no transportation might fit the bill for needing access and functional needs and it might be a temporary need, it might be a recent disability that has occurred. We are looking at the community as a whole and we are applying CMIST to it. And we invite a variety of stakeholders, those who cannot survive if they do not have access to these particular five things. C is communication, M is maintaining health, I is independence, S is self-determination, and support, and T means transportation. Using the CMIST model, like what we heard in Baltimore yesterday – I used to live about 20 minutes from that bridge so I understand the impact in that area. Also we are looking at three particular things to make sure that coverage occurs, effective communications access, programmatic access, and physical access, three areas we focus on. Regarding for effective communication, we partner with the office for the deaf and hard of hearing in developing signed emergency videos that would include captioning as well for people who may not understand sign language, and also there would be a transcript that could provide access to people who are deaf/blind, meaning they are both deaf and blind. We have learned a few things from the test run and so to make sure that it was a fast turnaround time so it could be distributed publicly and widely across the networks that were developed. Also before COVID we were in the process of developing a disaster interpreter training program and during COVID many new issues cropped up, for example, regarding technology, before COVID, we were not using Zoom and now we use Zoom daily. And how does that apply to our training? Last year we took up the issue of ASN, access and functional needs we took a trip around that, there were four of us and we wanted to – you might know Todd Howley – he works with FEMA, our FEMA go to person – and AFM specials for state management and others, the four of us went around Washington, both West and East Washington, visiting disability partners, having conversations with them and finding out how we could be of assistance around access and functional needs. And four or five months later, the wildfires in Spokane hit. Deaf people, several lost their homes, people evacuated quickly and had to leave medications that they have to take frequently, daily, so we helped replace those types of things and because of that, because of the road trip that we took, that was able to have a successful response to those wildfires that allowed us to have a successful response – no regarding programmatic access, we are increasing access and functional needs skills at the statewide level. The tribal level as well as local levels have also been increased, I will give you an example in 2022, I was involved with writing a white paper that convinced the legislatures to pass a bill setting up an AFN specialist position so we now have partnered with the emergency management and disaster preparation and focusing on having an AFN specialist and that has helped out a great deal particularly last year with the fires that took place in Spokane. There were workgroups that focused on the ESF6, emergency functions number six. Shelter and preparation for such disasters in regards to what happened, how we used our team preparing for disaster, we were able to discuss – we were able to discuss in a particular nation with Cascadia, to have tabletop discussion around the earthquake that impacted access and functional needs so we found a lot of information in regards to communication system breakdowns plus transportation during the earthquake there were lots, bridges or damage, maybe at another time it was even worse, particularly this time it was worse than what had occurred historically. And then there was the planning for calling other people back, repatriation. It was an important part of access that people come back to monitor access and functional needs and – I got your three minute warning – The third part, physical access. Having funding, but we did have funding for COVID using those funds, that was key to being able to integrate all emergency services and modify programs to accommodate access and functional needs and then there was no extra budgeting cost. People could trust emergency accessibility services as well. And that is the presentation – are there any questions? GERMAN Thank you Jim, folks you can put questions in the Q&A, and if there are further questions we will come back. Why don't we move to the next slide and here from Beth Meyer BETH MEYER my name is Beth Meyer with the Florida SILC I am the executive director here I'm an older lady with long gray hair and glasses. I'm thrilled to be here, very excited about this because this is an opportunity for us to talk about some common areas and get a common ground from ACL, appreciate all the work that has been put into this and I appreciate ACL understanding there is a need here so I think it is great. I will start with understanding your state's disaster response process and who the state stakeholders are. It is important as a SILC you have unique role that when there is a disaster to provide a communication platform for impacted CILs but everyone is a partner working together but your state stakeholders and your state partners, those people you can start developing relationship with in blue skies, before disaster. Understand the governmental and nongovernmental partners that your state relies on for assistance during a disaster, and it is easy to do, to go back and look at some of your state's communications from your governor's office. Many times we go back to an executive order from the governor and then those communications that come out of the office really does provide you a list of the people that the state is relying on the state level, to work with our counties. Counties are where the action is and that is where our CILs are so if your CILs are boots on the ground so to speak, you want to be able to take a moment and hold together some of that really important support for them to do their job. They might not have access to Internet that is reliable, but there are ways you can collectively bring that information to them. The work that the CILs do in a state at the county level is critical, as a CIL you want to be part of the solution for providing avenues for connectivity for your CIL you don't want to be part of the promise of the work that the CIL do – Your CILs are a critical part of exactly what is happening and getting the information to the community, some of the things, if you look at who the stakeholders are you might see something that was mentioned, durable medical equip it was a huge need, sometimes estate will go out and bring in durable medical equipment, we – from another state – durable medical equipment is ready to use it and to work with the community, they know their community better than anyone, why do we need someone else who does not know the community coming in and you can really lift up your CILs by providing and talking about some of the great things they do at the state level so you really want to have an understanding of that and take a moment before a disaster and talk to your CILs, what are they doing? You might be surprised and it is really great as a SILC to learn about something you maybe have no idea of some of the work that they do whether it is preparedness work, whether they are asking their consumers disaster response information or disaster preparedness information in the CSRs, these are good pieces of information because it gives you a starting point for where you need to go and what else can you do by connecting the state and the counties with our CILs so the CILs have a good opportunity to showcase the great work they are doing and it is really added value to the community because of they know the community, whether it is providing interpreter services, and working and collaborating together. In the FAQs, number three, about the CILs working outside of possibly their area, that came out of really listening because when a disaster happened we want our CILs to work together because they want to provide the services to their community. Understanding and providing as ace SILC a platform comparing peer to peer, it is not the SILC telling the CIL to do this and this it is peer to peer providing that opportunity for one Executive Director to speak to another Executive Director and you can just learn by their communications, providing that platform. So peer-to-peer, they are able to share best practices. And by providing that platform you are able to have an opportunity to learn a little bit more about your CILs and some of the work that they are doing. The state plan is critical to having objectives and activities is critical to getting your's SILC into the state emergency management table, to the table, that is a table to be at an understanding that. Use your SPIL to collect information from your CIL, to provide you an opportunity to go to the next level with your state. And ask those questions so they are able to capture the information. If they can capture the information through the SPIL you have saved your CILs time and that is important. I think I am being told by time is up – thank you so much for everything! SHAYLIN Thank you Beth for all you do we for learning the work you all have been doing in Florida around this. Next we will hear from Sarah Launderville from Vermont who will share more about the role of centers for independent living in disasters about public health emergencies and establishing networks and some examples so passing it to you, Sarah SARAH LAUNDERVILLE I am so happy to be with you today my opponents are she/her I am the Executive Director of their Vermont center for intimate living, white woman with brown hair and wearing glasses in my home office today. The role of the Center for Independent living in disaster and supporting staff, there is so much everyone has said already today it is so impactful side want to say thank you for that, when we think of a Center for Independent living in our philosophy and how the programming we know it starts with the community need, what are people with disabilities in our community experiencing and what do we do to help advocate firsts stronger citizens of is nothing more grounding that an emergency and especially if you are unprepared for the emergency. In my recent experience especially even when you are done all the prep work many things can change in a moment, people you build relationships with her suddenly not available, access to structures, technology, road, all the is not a valid and you will need to pivot. In my opinion the Center for Independent living needs to be front and center in network otherwise is everything moves it will do so without a response that is calling attention to access issues and discrimination. It will move along swiftly. We found out that part of our job is to remind leaders in those different systems that they need to be done right the first time. Outside entities will come in and support but we are the local organizations trusted group in the community that will help bridge that relationship and also make sure the outside entities are not bringing additional headache or damage to our community. Like others in the past few years we have been responding to a pandemic in the world continues to pull back funding support and policies that help protect us during this time in the emergency for us has grown exponentially. I want to say out loud and clear the pandemic is not over, while many people have moved on there is this nothing here type of attitude, disabled people are left more alone and without resources and in addition people and organizations are also being gaslight and making it even harder for individuals to survive. It is important to talk frankly about this as an emergency because it is, it needs to be highlighted in State Independent living plants and centers need to keep planning and responding. In July Vermont had a flood that forced community's and exacerbated for example people with disabilities experiencing homelessness. As a center the most important work is responding to a community need and supporting all our peers, in order to do that we need a staff that is prepared for that response. And it becomes something that cannot be overlooked is how staff are doing, and the most recent flooding the as are many buildings central office was absolutely destroyed and we are still rebuilding at this point as are many buildings in Montpelier, we spent the day trying to ensure access to food and medicine discrimination only to return to their own disaster followed, the stress levels and isolation the feeling like we are not all in this together grow stronger. I cannot stress enough how important it is to help find ways to support your staff during that time. Every organization is a little bit different so you should build that into a way that works for you. Board members are needed quickly in these situations too as part of planning it is import to build and how that might look, having access to be able to share the needs and get approval for potential large funding access to insurance and potential policy changes are very important. Having board members that are flowing the process to have an impactful conversation are also swiftly making decisions, and that is having a strong board already helps a lot. We've also learned in the different types of emergencies and disasters, people coming to help at the centers and we don't all speak the same language in a mean that literally and figuratively, it is important that in an emergency everyone is given imported real-time information in language that is accessible to them. We did a ton of work in our communities when the pandemic began from the governors conference is as many of you have, and making sure in American sign language interpreter was available and we thought that was baked into procedures and when the flood alerts began there was no interpreter at the first briefing. Sign language, live captioning, ASL, language translation services must be happening. The opportunity is lost and we know people can get hurt or die just because they don't have the same level of information as people without disabilities. They also when FEMA and other entities coming to the state there are ways they can support the work and there are limitations to that support and the time to work closely with those groups and get to know them is not at the height of an emergency, having followed relationship go a long way, holding daily check ins with the community so we were able to share real-time discrimination and shelters and our liaison help solve those issues, we got daily updates in the shelter system funding for individuals and training for our staff to help people get registered and the paperwork submitted. I want to leave you is the absolute importance of advocacy and responsible at the local level, between the example as I have highlighted with the flooding and pandemic we had an influx of helpers and volunteers, one thing we should talk about is helpers do not always ask, we know this is a community and it has been that way for people trying to help us for years but I reminded again what this looks like for us. Local volunteers do not always seem to understand accessibility including mutual aid group the ADA the needs of people with disabilities, I found it easier to deal with state and federal organizations because they are responsibility is under the law and we can usually pushback but what about that one person who volunteers to bring together a community conversation on their own time with the budget people show up but the event is not accessible. Planning needs to include ways that this does not happen, pushback aim, I'm just trying to help we need to do this quickly or we don't have any money, so you try to deal with all of that the local relationships the same time for dealing with the emergency and ensuring that everyone has their access needs met it becomes messy and in our experience long-term relationships are impacted. It is a important r that ahead of time and utilize all the important connections. Find resources, move it forward, we have done that, when our Vermont Department of health decided they would no longer offer accessible vaccines built it, the equity pandemic or data hit the road and we built home-based vaccine programs and we vaccinate in homes and facilities all over Vermont and that might not seem exceptional but when you build the program and the usual players are all against you in putting up areas because of politics it is exceptional, when the department of health, people in the community started ordering and creating hubs industry bidding high-quality and 95 masks and over the past year alone is accepted over 15 pallets which is about $300,000 worth of high-quality masks and respirators and creative partnerships with the National Guard to help distribute in prisons and congregate this facilities and we have a Google map highlighting 70+ statewide just a vision center for tests since December. When tests were no longer available we built that too since November we have been told, we keep hearing the pandemic is over, we distribute over 450,000 rapid antigen and since July over 3000 molecular tests. This is all in the past year did not even include all the work since 2020. Always a team done part-time and I will add a link in the chat so you can find the details about our pandemic equity work and that site also strandings including an emergency preparation workshop series we put on dedicated resources to plan and provide participants re-hundred dollars to purchase materials for their own kit, it was pretty widely really individualized in what people could purchase to try to make sure they were safe in their own homes pre-emergency. That was a partnership between the state Independent living Council and our center, and I think about it, thank you so much and I really appreciate being here today. SHAYLIN Thank you so much Sarah for all those wonderful examples for all that you continue to do in Vermont and also thank you to our other panelists Beth and Jim for your examples and work with statewide Independent living councils we notice a number of questions coming in to the Q&A and have been addressing some of them but please keep adding those questions as they come to you as we will have a section shortly to dive into some of these questions and answers. Next I will pass it to Ed so we can jump into the next piece of the conversation. ED AHERN Thank you so much to our speakers. Now we will get into the weeds a little bit we will dig down and start talking about some ideas for SPIL goals and you will soon learn that many goals being considered by SILC can also be individualized for use in CILs so I want to turn this over to German to talk more about something of the work that CIL and SILC have been doing GERMAN On the slide you will see that is after emergency CIL, goals, a series of bullets, getting started, how to expand on what you have in your SPIL, its own goal, objectives within a goal, and customizing to meet the needs of your community. I read them so we can all have an idea of what we will run through in the next few minutes and as some of you have been doing if ideas of what you have been including in your SPIL come to mind please add them in the chat what they look like or what they could look like that you have been thinking or learn through this presentation. thing started. If you are at that level start small, focus to understand the needs and concerns of your concerns as it relates to disasters. If you are getting started another idea is, as Ed mentioned, dedicate goals in your state plan for independent living, not only related to preparedness but response goals and recovery goals. And many of you do have goals related to COVID-19 as Sarah mentioned, pandemic continues to impact our community and disproportionately. Consider broadening those goals to encompass all types of hazards, not just related to public health emergencies. Some of you have begun some goals and objectives related to disasters in your SPIL but talking about how can we begin to expand and consider developing communication strategies To effectively reach and assist consumers during disasters. We know that staying informed and making a plan and exercising that plan is our mantra, it is important to not just do it once and put it to the side and continue strengthening all your activities and communication is crucial to keeping a community informed and let's not forget that many times emergency broadcast are not fully inclusive of our access needs so you are serving a crucial actor in disaster response when you are communicating activities in an accessible manner to your community. And strengthening partnerships with local emergency management agencies as we saw in the Q&A, some people expressed difficulty with the emergency management agencies taking us seriously. We have found things that can help is speaking their language. Asking the disability unity it is crucial we know how to address each individual, learning the lingo found for example in the national incident management system language. It can help bridge those gaps. But also, come to the table with what you have to offer, demonstrate to them how your communities are disproportionately impacted and how you are a trusted source for people with disabilities, and ultimately they need to work with you so they can do their job right. ED AHERN: As people with disabilities are aware that many times people think they know what is best for us, us as independent living centers really need to push that nothing about us without us peace, so when you hear we have got every thing covered, you have to utilize your personality skills and push back a little and say, maybe you don't. So let's work together. GERMAN: Thank you Ed, absolutely. Other areas that you can continue developing goals and objectives within goals. An objective could be contracts or memoranda of understanding, MOUs, with your local emergency management to do response activities. You work in a CIL, Shayla, SHAYLA in north central Pennsylvania! GERMAN Have they been successful establishing relationships with emergency management SHAYLIN During the COVID pandemic when COVID was made a presidentially declared disaster which allowed for additional FEMA funding to go to localities, we supported Roads to Freedom and really connecting one with their local emergency management agency, creating an MOU between their entity as the emergency management agency in order to access some of the FEMA federal assistance through a public assistance program and their work to support people in nursing homes and other facilities, relocate, transition at through emergency relocation, while they temporarily stayed in the hotels with wraparound services and other supports and ultimately transitioning that long term transition plan that is something that was a big process, a lot of work and a lot of advocacy but summing that Rose to Freedom of Stuff Has Proven Can Be Done GERMAN Thank you Shayla! Other objectives can be conduct disaster shelter assessments, shelters for people to experiencing homelessness and disaster shelters open during disasters and you can learn work with York locality to conduct accessibility assessment on them. Now we are supporting the center for independent living in Puerto Rico, to conduct this actual objective across all the municipalities. You can disseminate readiness information. And as Shaylin mentioned in the beginning, disaster related information for your consumers as they begin calling your INR. You can also provide essential services. Centers for independent living in Florida or a great example, right after the disasters they contacted their consumers, checked what would be there needs and when needed, deliver food, water, the immediate essentials. And they are able to do this by coordinating with air state emergency management agency. We heard from Florida, Vermont, and Washington. Thank you Beth, Sarah, and Jim, again! In their goals, Florida, it is goal number four, a broad ranging all-encompassing activity. It reads, disaster preparedness, response, recovery, resulting in systemic change. People with disability's will have equal access to the community resources as a result of disasters, natural or human made, civil unrest, mass shootings, technical and cyber security breaches. Vermont goal number one states, expansion of independent living in Vermont, and it has subsections, first, IL partners consider emergency preparedness for people with disabilities to be of the utmost importance and have educating sit citizens with disabilities on developing prepared his plans and information in the processes. In their Vermont SPIL it is incorporate emergency preparedness throughout the SPIL goals and objectives. In Washington first goal, Washingtonians with disability receive community integration and committee based living supports to become more independent in the community of choice through independent living. Breaks that goal into two objectives, objective one, emergency preparedness, and the other objective is they coalition on inclusive emergency preparedness. One other example we want to share with you is South Carolina goal number two, which states, South Carolinians with disabilities are prepared for emergencies. And they meet frequently and ahead of disasters and through disasters with all of their CILs and they invite public health and emergency management from state to county levels. It is a promising practice at all can begin preparing for today. In the chat, Jim does add, in Washington, be FAST team, and FAST stands for SHAYLIN Functional assessment service team GERMAN We will come back to that – these are some overarching goals and objectives within goals that you can take and customize to meet the needs of your local communities. You have heard no enough of me and we heard many great ideas from our speakers, we would like to hear from you all. And begin going into a question and answer session and some of you have put questions in the Q&A already, please keep them coming! ED AHERN: Thank you very much, German and Shaylin, one very last thing about goals and stuff, we could really be small in something as little as setting up a subcommittee to your SILC to discuss the topic it is a small step with huge impacts a very excited. We are going to the most important part of this and that is hearing from you. What we are going to start doing is answering and getting some of these questions, many have been answered, so let's jump right into them. MARY KATE We are collecting all the links that are in the chat, that has been a question, the first question I see is, how to advocate and be involved in the triage process where people with disability's may not be getting the assistance or priority? ED AHERN I will start with that a lot my colleagues jump on, it starts with the conversations, you communicating to your, showing data, the first step is bringing awareness to any because emergency management may think everything is great, so they need you as a reality check. Others? GERMAN Another idea is to communicate with who needs emergency support functions, mass care, in your state, and create an MOU with them that you will collaborate in disasters. The triage part may be couple again, I would not use that terminology but, because of the fast-moving pace of disasters in those first 12-24 hours as they are standing up shelters and allowing everyone that they can, and showed. But Florida is another example, they have written in collaboration with emergency functions six and eight, public health, to go into shelters and talk to the disability community of different access needs, and it can be a very productive relationship ED AHERN You can also add to do some disability awareness training to your emergency management structure that can be a great first step as well. MARYKATE German can you put in the chat the functional areas, six or eight to make sure folks have that reference? ED AHERN I did put a link in the chat to the emergency support functions early so it is in there as well. MARYKATE Onto the next question, this is from June, I think it is directed to Sarah, can you talk more about the daily meetings you had with FEMA after the floods, who participated, were you the convene or, can you give examples of the problem solving that occurred? SARAH LAUNDERVILLE initially, the convene or was VCIL and FEMA together we did have previous experiences from our regional person, Kate, during tropical storm Irene which devastated a lot of Vermont at the time so at that time am pretty sure the convene or with similar but it was disability rights Vermont our protection and advocacy, it could be any of them and sometimes it depends on who is impacted and not and who can step up to an emergency in that moment the building in with the other groups so what we did is we reached out to the Vermont coalition for disability rights, so the blind and visually impaired, developmental disability's counsel, psychiatric survivors group, State Independent living Council, deaf community and a bunch of state divisions as well. Initially it really was more of the disability component of those groups and I think I met Ed through that as well as other ACL folks, peter and I are program manager VCIL your find that granting the cool thing, is we started those out but then once an emergency was declared FEMA had resources to pay for our live captioning and ASL interpretation at the Zero meetings which is helpful. Then, it was really very, one of the first things was there was a pharmacy that people could not get to anymore so it was, it was really specific how do we help come together and get people prescriptions that they needed that day did not have access to. When the sheltering system got up and running we heard from a disabled person who is also trans that they were told by volunteer they could not use the bathroom that they had to use the other bathroom so we got on that and got support from FEMA around that. And then there were policies, I won't go into too much longer but I think the interesting part for me was FEMA comes in and they know what they know and they have to do, and we are here knowing just the political nature the policy issues that our state was already dealing with so the issue of homelessness in our state and the amount of people with disabilities experiencing homelessness is huge and so that whole issue exploded more so having conversations to help them understand the state of the state because they are getting their direction from state officials and not advocates so there's a lot of messiness that can come up so it is important to go forward, and I could go on but I will stop! MARYKATE We might not get to all the questions so we are capturing the men to note the evaluation link is in the chat – but back to questions – there is a question, what AFN, access and functional needs training, would you recommend to ILCs to start teaching DAFN members about? If someone from our panel – SHAYLIN I will get us started and others feel free to chime in, Ed touched on this a little bit, when area is starting with the basics, disability awareness trainings and making sure that folks are on the same page, we are not continuously using medical model approaches another outdated language that we always see in different spaces and making sure folks are understanding where we are coming from as the disability community and us also understanding their lingo and where they're coming from on the emergency measurement side and as you start building those relationships, building on those topics, moving from disability awareness to disability bias in mitigation of disability bias and going into disability rights and obligations, it is a big piece we at the partnership do a lot of trainings about four centers for independent living to continue to educate in their community's for local emergency management agencies and what we consider all of us in that the CIL and disability community of the basics of disability rights we find it is a really big value for emergency managers for us within the disability community to be hearing that information and relearning it or learning it for the first time making sure those pieces that we have touched upon even here, shelter assessments, equally effective communication, these types of pieces are being incorporated in all aspects of emergency operations. ED AHERN On the other side there is a range of courses to acknowledge that we can bring to it for you to educate your centers about disaster. His basic courses because you may want to come up to speed on some of that so there they are great resource we can provide on that as well. MARYKATE Jim, did you want to add something? JIM HOUSE Sure, in the past when we look at centers for independent living especially in, there was a center that did offer training and the training was PERF-334. That training is basically an emergency training that is provided to the community. And is almost like CERT where it would be a half-day training up to and including and it includes community members including members with disability and I think that we can have clients that come to those types of meetings. And review emergency plan as well for the upcoming year, just so everyone has an opportunity to be exposed to that information. MARYKATE Thank you Jim! I think we have time for one more question and Ed, I saw this question in the chat, how are ILCs paying for staff time for disaster related work especially for work during response recovery and I think that might be an interesting way to and the conversation. If you or a panelist would like to answer that. ED AHERN I will start by saying the FAQ does talk about how you might use your intimate living funds for disaster. As we know there is no dedicated funding for that so I would rather go to one of our presenters to give an idea of where that can, where they can generate revenue for that. GERMAN: We mentioned MOUs, they are with FEMA, networks on the reimbursement level and can be a lengthy., It is an option but not the most sustainable option. Fundraisers – in disasters, many local foundations have funds. A letter, a short letter saying, this is what you are planning to do and you need so much to accomplish it so building a relationship with a county statewide regional foundation can be helpful and we have supported many CILs here and there disaster response operation that fundraising capacity will be crucial. And I will close with, we are hoping later this year to see federal legislation to include emergency rapid funds to ACL beneficiaries similar to Florida and Puerto Rico, but in statute and as that information comes this summer we will share it with you all MARYKATE I do want to thank everyone very much for joining, and I know we did not get to all the questions but we will be adding them all together and I'm sure having more conversations about this. And I ask folks we would greatly appreciate doing our evaluation as well, Ed anything in the last 30 seconds? ED AHERN I want to say thank you, and let you know that there are vast resources out there, there are people who want to support you, organizations that want to support you and I do know the partnership as a weekly call that has tons of stakeholders and you can come and ask any question and you will probably get lots of answers so reach out to your program officer at ACL and we can help to connect you with the resource you need, thank you again and thank you to our panelists really gave a great piece of what it is really like at their. Thank you!