Vermont Legislature SmartTranscripts:

[VL Coffin IV (Member)]: All right, we are live.

[Matthew Birong (Chair)]: Good morning, everybody. It is what day is it? It's March 11. Thank you. It's Wednesday, March 11, House Government Operations and Military Affairs. It's a little after nine. We are starting our day. We're taking testimony on Oh, it's a draft. It's an act relating to emergency management. It's draft 20 six-five 50. And we are starting off with some testimony from a related bill on H-nine zero one. Our first witness this morning is Valerie Hughes from the Deaf Independence Program Coordinator from the Vermont Center for Independent Living. Good morning. Thanks for coming in.

[Valerie Hughes]: Good morning. Good morning, everyone. My name is Valerie Hughes. I'm the Deaf Independence Program Coordinator for the CIL, Big Lots of Living Appeal Building. I'm also a Deaf. Thank you for inviting me here to help me testify on H901. I work all over the state. I'm here to just get my testimony to really emphasize the need for accessibility in emergency situations, for our Deaf, DeafBlind, hard of hearing, and late Deaf. Especially during those emergency situations. I really wanted to come here to give evidence, because typically Deaf and hard of hearing DeafBlind people are the last people to think about situations, due to the accessibility limitation we have right now. One example of that would be during the flooding in 2023, There was a Deaf person who didn't know what was happening. No weather warning, no flood warning, nothing was accessible for him to know. So he ended up being stuck at home. Finally, eventually, somebody came to rescue him, And then a few weeks later, he ended up dying. Another example would be this is from a while ago. We're thinking about E911. Before, we used to have the New England Telephone Company. I know that they collected a bunch of data on different individuals who are Deaf, hard of hearing, DeafBlind. And it was a volunteer, you know, you could volunteer that information. So that if an emergency happened or something happened, know, like if I called 911, the dispatch operator would say, Okay, so that person is deaf. Just have that information beforehand. And that information, the New England telephone company, I don't know what happened to it. Because now everything's automated. We're not using landlines anymore. Everything's wireless. We're all using cell phones, texting. But also, not all Deaf people and DeafBlind people have the money to buy new technologies that are wireless or new equipment. Because a lot of that equipment costs a lot of money. We really need to fix that. We need to investigate that. We have a video phone that will call 911. Not all Deaf people have that, because they can't afford it. Not all Deaf people can afford WiFi. Not all Deaf people have an email address. We really need to figure out how to improve the accessibility to reach all Deaf and DeafBlind folks. We need some kind of program to have financial assistance. Like, to help with emergency alerts. I know actually one DeafBlind person. And they have a doorbell system. And it works great for them. It looks like a simple enough system, but that costs them $400 most Deaf, DeafBlind people, they have limited income. Maybe like $2,000 up to $2,000 a month, between $1,400 to $2,000 a month. And that pays for rent, and food, groceries, their basic needs. So, a lot of Deaf and DeafBlind people have such a limited budget, it's hard to afford services and equipment like that. And also, typically, you need to buy other things. Different smoke alarms. Different equipment just for your home. So, we really do need to focus on the financial part of this system, as well. We also need to think about training first responders. Fire department, EMTs. So, they can provide safe and individualistic accommodations for Deaf, hard of hearing, and DeafBlind people. Does that person know sign enough? How would they communicate with that person? Can they write back and forth? Can they do text to speech? Another example I have, a born DeafBlind person. There was a tropical storm. And she was sitting and waiting for the bus outside. But the bus system had stopped due to the storm. And he had no idea. So, he went back home, because the bus never came. And then he found out that everything was closed down because of a UPS delivery person. He had no idea. UPS guy let him know. The buses didn't close. The town was flooding. He was like, Oh my goodness. Well, I had no idea. You see it on the news a lot, on TV, and they'll have captioning, which can be helpful. But sometimes the captions are so quick. Sometimes you can't always read everything. They go away so quickly. There's a restriction speaks quick. And we've advocated and asked for help for so many years. Advocating for equality, having that equity of information. I mean, you all can get the information no problem. We have to depend on someone. Get that information. Do you know what's going on? Have that community or family support. And I know where I work, VCIL, Vermont Center of Independent Living, offers captionings and ASL interpreter for press conferences. But that's the bare minimum. It's not enough. We need to have accessibility for all people with disabilities. Financial plans for people to afford phones, technology. We need that information when emergencies pop up, and we need it quickly. So, I want everybody to please keep that in mind. And some Deaf folks don't have access to language that well. Some have only up to a fourth grade reading level. So sometimes the captions are not enough. They can't read it and understand it. That's why having an ASL interpreter captions is necessary for everything. If somebody is telling Oh, a recent example also was that there was a gunman. And the police were warning everybody, Hey, stay in your home. Stay in your home. But that DeafBlind person had no idea. They didn't know they had to stay at home. And also, DeafBlind people are isolated in general from the information. And it's even more essential to miss that emergency information. And Deaf folks are not always close to their families, due to the lack of communication. Some people are lucky to depend on their families, and some people can't. Maybe their families are all hearing, they don't know sign language, and that one Deaf person only speaks and uses oral communication, it just The communication is not really there. I grew up speaking and using sign language. When I grew up and I became really fluent in sign language, I chose not to speak anymore because that's my native language, but all of you guys speak to each other. And most parents don't sign with their Deaf child. So, that relationship, that bonding, is really disconnected. Or I'll see some families that will try a little bit of sign, but it's not enough to have a full, meaningful relationship with our children. I'm a very lucky person. My mom signs, my sister signs, my children sign, I have nieces and nephews that sign, my whole family. But a lot of deaf people aren't that lucky. A lot of them don't share that experience. My stepfather was a Hall of Fame broadcaster here in Vermont. And he always made sure that I got information. He would share that to me. And I try to share it with the community. But I don't know everybody. It's impossible for just me to share all this information with everybody. And again, with my stepfather, he has experienced hearing loss now. Later in his life. He's more late deafened. He has hearing aids, and he does wear them. But when he takes his hearing aids off, he barely can hear. And now he can really sympathize with me in a way he was never able to before, about how much hearing loss impacts communication and lack of a relationship you can have with folks. And still, he always does update me on what's happening in the community and around Vermont. But just think about you. If you became late deafened, think about all the information you would miss. And I just want to thank you for letting me come here and testify in front of you. Please feel free to contact me anytime. I have a business card with my email and phone number on it, and thank you so much. Thank you.

[VL Coffin IV (Member)]: Thank you.

[Valerie Hughes]: Does anyone have any questions?

[Matthew Birong (Chair)]: I didn't. So, we don't have all the money in the whole world, but if we did

[Valerie Hughes]: I know, I know. I understand that for sure. Right. But

[Matthew Birong (Chair)]: what would be your ideal first First step, magic

[Valerie Hughes]: wand, all have all the answers.

[Matthew Birong (Chair)]: Yeah. But what would be the ideal first steps?

[Valerie Hughes]: Really, to be honest, try to improve accessibility for everyone, including Deaf, DeafBlind. We've been focusing on Deaf and DeafBlind for the last few years, and I can see how much the lack of information that they're given or accessible to. Money is the real thing. It's a huge issue right now. And I understand that. I try to get information to some of the Deaf and DeafBlind people I know in the state. But I know that there's others out there. And I don't if it's because of their If their family takes them out, if they're social, if they're friendly. I don't know. If I don't know them and I don't see them around, it's hard for me to access them and get their contact information. I think we just need to improve the system on how we can make that communication more accessible for them. Doctor. Coffin?

[VL Coffin IV (Member)]: Yes. Can I ask you in as far as emergency management, what would be a good way to implement to make sure, this is your opinion, to make sure that even local fire departments or EMS or police would know the contact? Would there be if it were voluntary allow you know, let people know that they could voluntarily let the local police department, the fire departments know that someone there in an emergency situation would need special contact, would need to make sure they knew? That something that would it's something we could do that would be a low cost effect to help people?

[Valerie Hughes]: Yeah, I mean, I think that would be great. It means that you mean that the person would volunteer that information, right, to get the accommodations with that person, whether it be the fire department, police. But you also want to include what kind of communication they need. Some Deaf people just use ASL. Some are okay with English. Some are oral and will speak There's a range of communication styles and modalities that people will use. So, when I was younger, I would speak all the time. But now, I choose not to. I don't use my voice. And especially now, I want to show people, this is me, I'm deaf, I use ASL, I use interpreters. And I will use writing back and forth. And I do have And I have some information that I'm happy to give ideas and brainstorm. I've got a balance not breaking confidentiality, obviously. But I'm willing to work with community and you all.

[VL Coffin IV (Member)]: Right. So, again, thank you for that. And what I was trying to get at was a voluntary to let them know, but in that voluntary joining with them to let them know would also include how the preferred method of contact is, how if it's ASL, if it's written in the way that would work best for the person.

[Valerie Hughes]: I think that would be awesome. That's a great idea. And, again, you just have to make sure, Any videos that you create that have captioning, have an ASL interpreter in the corner to make sure that that community has access to the information. So, they know that that survey or however you're collecting that data is happening. And they can opt in for that. And also, I know Rhode Island has a position in their state government. And that person is responsible for his name is Michael, but the last name is B A E R, Baer. Michael Baer. And he works with training other states, to go to other states about emergency management. Had to talk with deaf blind people. I know last year he did that. I think last year he talked with Elizabeth Burrows about that system, his training. So, if that's another resource, I think that we should maybe look into that, because right now, there's only two states in America that have that position, specifically. Hopefully, we can use that as the next step.

[VL Coffin IV (Member)]: Thank you. Thank you very much.

[Matthew Birong (Chair)]: Wonderful. Thanks so much for coming in. Right, so moving on to our next witness who's on zoom. It's friendly. You Larry on Nunez, who's the president of the Vermont Association of the Deaf.

[Franley Ulloa Nunez]: Hold on one moment. Just. My computer just got switched.

[Matthew Birong (Chair)]: That's fine. Take your time.

[Franley Ulloa Nunez]: He's saying, yes, hello. Thank you. My name's Franley, and I am the president of VTAD, Vermont Association of the Deaf. I started in last year, 2025. I moved to Vermont in 2023 for graduate school. So I've been in the state for a couple of years And my background moving here, I'll let you know, I am a biotech at University of Vermont, and I study emergency response and emergency management. So because we do that in the lab, we always have to study that. How we get out of the, because we are working with chemicals, we have to all train and learn what do we do in case of emergency. We all have to leave. And so I've looked at that and see how I've learned how to do that and what we've learned from that. And I see that there are some gaps in that response. And especially I see those responses for students with disabilities, for people there in the lab disabilities. And that can include deaf, hard of hearing, deaf blind, and just other students with disabilities. And I've worked with the university to try to mitigate some of those gaps and try to figure out what can we do to make sure everyone stays safe.

[Valerie Hughes]: And I've talked with

[Franley Ulloa Nunez]: the University of Massachusetts. I've talked with them about what they plan in their schools, because that's where I used to go to school. And so then when we came here, when I came here and I became the president of Vermont Association of Deaf, I saw that there are so many gaps here with helping people throughout the state with disabilities, especially those who are deaf, hard of hearing, late deafened, and deaf blind. So with this bill, I see, just like how Val just explained, all her experience, seeing what needs to be improved. And I second everything she says. Those are some of my same experiences as well. And you talked about what can we do to make sure that people, deaf people in Vermont, get that access. And I agree that there needs to be steps taken immediately. We talk about municipalities partnering with disability organizations. And I want to share one experience that I've had and that I've seen other people have as well. Now, I know state organizations and towns, municipalities, they partner together, but oftentimes it's organizations that have more of the depth of knowledge. They have the experience. They know what's going on and where sometimes the state municipalities don't have that. So that's where they need to partner together. And we don't have, and of course, at Vermont Association of the Deaf, we're going to have those experiences, but we haven't partnered with anyone. Places are not partnering with. So we've met people, we've tried to make contact, they're like, oh yeah, that sounds great. And they're like, okay, Vermont Association of Deaf, great. That's a great organization. And it starts like they want to get connected with us, but then we don't hear back. And it's like there's momentum and then it stops. And then we're not involved in the decision making. And that's where it ends up impacting the citizens here. And then we don't have emergency plans. We don't have any type of management with how to deal with getting everybody equal access. And then we don't also, when people are planning for how to make sure everyone knows that there's an emergency, they are not including people with disabilities in that planning guide. And that's one of the issues where the real the people with the experience, with the knowledge are not involved in the decision making. Right now in Vermont, we do have like a placard, a card, an emergency card that you can have like in your car, you were to get pulled over, where you can say, I'm deaf, you can point to some signs. So there is something like that, but that's it. It's just a small little placard where you just can point to some signs. So there's not anything really where they're working together with Deaf organizations, with organizations with disabilities. And what there really needs to do is, yes, we say training, going and having Deaf folks go to a firehouse, to a police station and have a four hour training. Have something where we can really, everyone can really learn from each other. And so when, for instance, myself, when if I were to get pulled over, I don't or a police officer would come to me, I don't give that plaque. I wouldn't, I don't show that. Doesn't, it's not effective. Because it's also putting that responsibility, that accountability, it's all on me. And it's not true effective communication. And we don't have that. And there's no, it's all put on the deaf person, the person with the disability to be the one that has to find out and has to say, hey, this is what I need and this is instead of trying to just survive a situation, trying to be safe and it's putting all the almost the blame on them where they have to figure everything out instead of the emergency responders working with us and trying to, and figuring out what they can do to help. And instead it's we have to now be the ones that are trying to communicate to them instead of them communicating with us. And Vermont Association of Deaf can work with the state, with the municipalities. We can give feedback to make sure we have plans in place, that there is training. And there's something that could be put in city centers to make sure that first responders have the type of plans in place that work for everyone, that work for deaf and deaf blind people with disabilities. And it's not where the person with the disability is the one that has to conform, is the one that has to have everything in place on their end for a first responder to be able to communicate. Instead, it's a true partnership where the first responders knows what they need to do already when they arrive on scene, they know what to do. They know what action they can take instead of the deaf person or the deaf blind person is the one that's supposed to somehow in that emergency also tell the first responder what they need to communicate. And so if this bill were to pass, we need to also assess emergency management plans to make sure that they are sufficient. I don't see where that's included as well, where that feedback of that, let's make sure that everything is in place and is vetted by the people that are gonna be receiving that response to make sure that it does match with what the needs truly are out there. So we do need to have someone, and it could be, it would need to be set up, some type of timeline, maybe a yearly assessment, every two year assessment, something to make sure that it is still working and if there's any changes that need to be made. We need to make sure that it functions properly for people with disabilities. So we absolutely need to have some type of assessment plan in place so that we can make sure routinely that we are checking in to make sure everything is flowing the way it needs to be. And then also how the emergency management works with health care is a,

[VL Coffin IV (Member)]: it

[Franley Ulloa Nunez]: is also something we discuss. The Battleboro Hospital Memorial Hospital, I'm not sure if you guys are aware or not of how that works, but they. Sorry, hold on one moment. So Brattleboro Memorial Hospital settled with a case that they just had for providing to provide accommodations. Interpreters, just being able to provide interpreters, because they have not been able to provide that since 2019, consistent interpreters in cases of emergency. And so now it's seven years later, and they have been struggling to be able to provide interpreters. They just settled a case. But we were not involved with and so they have to make improvements now. We deaf folks were not involved in those decisions of what improvements need to be made. So it was the hospital, lawyers discussing what needs to be improved, but there was no feedback from the people that they're trying to improve it for. The deaf community was not involved in any of the decision makings that they were making for the deaf community. And that has upset the community greatly because people are making decisions yet not involving us. And that's what I'm trying to say is that we, Val, me, other people of the community need to be involved in decisions. We need to have the assessment plans. We need to make sure that the emergency management is functioning, the plan is functioning the way it needs to be. Because without our feedback, then how are you supposed to know if it truly is effective? And like Val said, yes, there are some deaf folks who can lipread. But even with lipreading, there's still things that are missing. And if you're missing things, you don't know you're missing things. So we need to have improvements. We need to have a coordinator who understands and has an expertise in working with people with disabilities. So someone with experience, with that knowledge. And we need to make sure that someone also knows the ADA, American Disability Act, and that someone is able to have the expertise in how to provide emergency management, communication, knowledge, feedback. The deaf community has to all be involved when decisions are being made, when programs are being implemented. For this bill to have the proper representation, you'd have to have each scenario, each type of emergency would have to be studied and realized and figured out what exactly needs to be done to make sure everyone can be aware and is knowledgeable about what the next step would be in that plan. And then in closing, I was thinking of how leadership, how everyone needs to work together. How is everyone working together, but we have to also think about the individuals involved in an emergency. And I think oftentimes the individuals are the ones that get lost when plans are being made. And I see this in the school systems as well. We have about 400 students who identify as deaf, hard hearing, deaf and blind in the state. And many schools think, Oh, well, this is great. We have an IEP, Individual Education Plan for these students. We have this. They think everything is going well with that. And they're not realizing that we are still not serving those students as well. You think, Oh, we have a plan. So once we have that plan, everything's good. We'll check-in and then you just start going along. And that's what I don't want to happen here, is that we make a plan and then we just think everything's great and we're not checking in. We're not making sure if that plan is really truly working for the individuals in this state. Want to have something on TV, some type of warning system on TV, talking about the different things that we can use? Yes, cell phones are great, but we do live in a rural state and you can't always depend on Wi Fi Internet service, especially during storms, during some type of emergency situation. So just going on a cell phone warning system is just not enough. We need also warnings on TV. We need to diversify all of the warning systems because, especially because of our state, and you can't just rely on cell phones. So we have to think about all the different ways that we can make sure we are letting people know when there is an emergency. So thank you so much for letting me come here and give my testimony. I appreciate being involved.

[Matthew Birong (Chair)]: Thank you so much. Does anyone have any questions in the room? I'm wondering what going back to what you were saying about the first responders Or police officers when they interact. With deaf folks, and I'm wondering if you know if there's any like. Is there any training at all? Are they given any guidance about how to behave in these situations or what's the most useful for people or? Are they just doing this on the fly kind of?

[Franley Ulloa Nunez]: Right. I know a few years ago in New York, in Rochester, New York, I know that they did try to partner with first responders, the deaf community, and the university. And they did have some training there with firefighters, firefighters and first responders, and they did kind of have some scenarios that they played out. They would do, okay, what would they do in a national disaster? So they would have some mock drills, and they would actually do it and see what needed to change, what they needed to improve. So I know that has been done in the past in New York. But again, I don't know how funding would work for doing something like that here. I know Rochester, New York. They are pretty good with developing emergency response teams because there's such a large deaf population in Rochester. So that might be a good place to just check to see how they have worked that with training and partnership. So I know there are organizations here where maybe we could do something like that as well, where we could get together and you could have the Vermont Association of the Deaf along with the first responders doing a mock type of drill and to see how this really looks like what actually happens when you were there in emergency. So yeah, I think that would be something great to do. We have not had that here. But I know that would be something great to do. And like I said, I know other places have done it, but I mean, it would be, you could see how cell phone notifications work, how TV notifications work. But again, like I said, I hate to rely too much on just doing like cell phone type of notifications because of the spotty WiFi and internet in our state. But yeah, but to have, and because I don't even know, have first responders even met and communicated with deaf folks in the past? I don't know. I mean, because we are kind of a little bit more isolated in this state, I don't even know if they've ever even met a deaf person before. So just basic training like that of how to figure out how to communicate would be beneficial. You know, and that would just help open the doors for more support ongoing. So I think that is the first step doing something like that, a mock drills to start figuring out what needs to be done and opens that communication. And like I said, I don't know if that's something that first responders would be open to, if there'd be even pushback to that, I'm not sure. But I think that would be something that would be a first step to get that communication going.

[Matthew Birong (Chair)]: Yeah. I would hope there wouldn't be pushback for that. It's distressing to think of people isolated and vulnerable in an emergency. And I wonder this might also be a question for Val. If either of your organizations have worked with the Vermont League of Cities and Towns, it was interesting that idea. I can't remember which of you brought it up about working with municipalities. And I wonder if that is something you've tried to do before or if it's, you know, it's just an idea of possibility, I guess.

[Franley Ulloa Nunez]: This is friendly. And I. I did try to work with municipalities in the past. I mean, it's and I don't remember exactly which ones, but because they were smaller towns. And some of them, like, again, like said, they would be like, yes, great. But then there would be an issue of getting an interpreter. And so that would have to be planned out. And so again, it then goes back to the if there's an emergency, it's difficult enough getting an interpreter when you're planning a meeting, but then trying to plan one when it's a last minute thing, when it's an emergency. So there's just not a lot of coordination. There would be, yes, yes, we want to get together, and then it would just fall through. And again, it would become a whole issue of trying to schedule a get together, trying to figure out when it would work, and then it just it fell through all the time, and it just never has happened. So we I have made plans, and then it does not happen. And often it ends up being a communication issue where we both want to do it, but then there's not an interpreter available or they're not gonna get an interpreter. And so it always falls through. And it always comes back to where we don't have the funding. We don't have the funding to pay for an interpreter. We don't have the funding to implement these things. It always just comes back to funding.

[Matthew Birong (Chair)]: Yes, and that is the worst. I think we all hate that it comes back to funding.

[Franley Ulloa Nunez]: Right. And it feels like we just keep getting the door slammed in our face over and over again. And we need action. We need to set up action now. We keep having meetings and Val and I, and I know other deaf leaders in the state, we feel like we keep trying to get momentum and going and make connections and start plans. It's like we're just always the one trying to chase after everyone and then the doors are slammed in front of us. And it feels so frustrating for us trying to break through and make sure we are getting our needs met in the state and that we are aware of emergencies. We need to be aware when something's happening.

[Matthew Birong (Chair)]: Thank you. I appreciate it so much. I appreciate you coming in and talking to us about this. I think it's. You know, it's something that we weren't I was out, I won't speak for the rest of the committee, but I wasn't totally aware of how frustrating it's been and difficult, and I'm glad that we can hopefully address it now. Thank you so much.

[Franley Ulloa Nunez]: Thank you.

[Matthew Birong (Chair)]: All right. And next, we have Sarah Launderville on Zoom, the Executive Director of the Vermont Center for Independent Living. Hi, Sarah. Hi. Can you hear me okay? We sure can.

[Sarah Launderville]: Awesome. All right. So good morning. My name is Sarah Laundromville. I just sent in my testimony and I think Nick is sharing it with you. So I apologize for my delay. I'm Sarah Laundromville. I'm the executive director of the Vermont Center for Independent Living, and I'm also the president of the Coalition for Disability Rights. And I really appreciate this hearing and invitation today to testify. I appreciate the bill and how it addresses the holes we currently know are in emergency preparedness and response systems in Vermont. We believe that inclusion of people with lived experience can make our system stronger. VCIL is a disability led organization of people with disabilities working together for dignity, independence, and civil rights. We were founded in 1979 and we provide supports and programs as well as offer education, technical assistance, and systems work to enhance Vermont and break down barriers that people with disabilities are experiencing. Been involved emergency management. Sorry, my We've been involved in emergency preparedness as well as response for many years in different ways. And unfortunately, in the most recent past, we find always dealing with emergencies as they happen and working to encourage the system to change only to find that after the existing emergency, the system goes back to one that fits the need of most, but not people with disabilities. Our systems are indeed built on ableist models. Ones that favor people who can walk, who have a car and can drive, who can read or see, who can communicate by talking or hearing information, who have a place to live permanently, or who have access to cell phones, English speakers, people who understand social media, and who take the information in neurotypical ways or that their presentation fits dominant cultural norms. We set up systems and leave people out for lots of reasons, but mostly because the perception and reality that it costs money or takes effort to build something stronger. We have buildings with stairs, press conferences with no American sign language interpreters, social media posts with no visual descriptions, communication that has complicated language, complicated paperwork that needs to be filled out electronically, and systems that fail for people when seeking reasonable accommodations. Our systems in emergency response are highly dependent on volunteers, towns and people, most of who have not been educated on the Americans with Disabilities Act's requirements or even simple etiquette on how to be around people with disabilities. And in some instances, we have leadership that resent their responsibilities connected to disability altogether and discriminate outwardly to people and families with disabilities. We have school systems not providing the supports to students and schools themselves that leave students with disabilities without equal access that range from participating in a field trip to safe response during drills and actual emergencies. In recent years, VCIL has found herself at the center of conversations and complaints from disabled Vermonters around these systems. The lived experience and the inclusion of that experience in planning and implementation is something that can help change the system, but only if done in a way that doesn't minimize the inclusion of the voices or go back to a different system when the crisis is over. The problem is for years, people with disabilities have been asked to participate in this sort of work only to be met with defensiveness of people being paid to provide those services or people who dismiss the voices of those who have been oppressed or upset because the person is raising the issue and identifying something they don't understand or it will cost money to fix. When the flooding hit in most recent history, VCIL and other advocates met with FEMA every single day for three months and then tapered off to weekly meetings. We worked to ensure that our peers in the community were getting what they needed, including medication and food. We brought issues to the team as they arose and our FEMA contact for disability would help raise and help address individual issues. And we coordinated the coalition of organizations supporting people with disabilities. So many volunteers and groups stepped up too. When I remember that time, I remember all the good of people helping. But I also recall what could have been better and the complaints of people that could have been avoided had there been good practice in place or a stronger understanding of disability. In one situation, a community leader helped bring a community together by holding conversations within the municipality. We and individuals with disabilities asked for American Sign Language interpreters and live captioning through Zoom portion of the conversation. There wasn't an actual group responsible for the meeting, and that translated into nobody taking responsibility for accommodations of people with disabilities. We were told that there just wasn't enough money. Leadership asked VCIL to pay for accommodations that under the Americans with Disabilities Act that passed thirty six years ago, by the way, they were responsible for. But it got better. The city said that the community group was running the meetings and the community group said that the coalition of them, including the town, making it one of those quote, grassroot responses in which nobody was technically responsible to ensure that people with disabilities were included in that conversation in a meaningful way. Nobody wanted to take that responsibility and nobody had a budget, a planned budget that would help this group hold meetings excessively. That is poor planning. Deaf and hard of hearing individuals were actively asking to participate in the conversation and they would have been left out. And in the midst of our central office being completely destroyed here in Montpelier by the flood, just like many and moving our employees to home based work, just like everyone else, most of whom our employees are people with disabilities themselves, trying to figure it all out, we decided to pay for the accommodations even though it wasn't our responsibility. People were absolutely ready to congratulate, give awards and concerts to the able-bodied volunteers who are mucking out the buildings and homes, which I am not trying to diminish because the response was indeed great. But as we raised concerns and issues of inaccessibility, we were met with, come on, we're just trying to do the best we can, and we're all in this together. A famous quote from the most recent pandemic that the people with disabilities were also left behind it. All upholding a system that didn't really want to hear from people with disabilities and Deaf Vermonters unless it fit into a box of and not having to change the facilitation for just a few people. Around that time, we also heard from disabled people experiencing homelessness that there was a noticeable increase in quote helpers, social workers, volunteers who began showing up regularly to check on people's safety and needs. And although well intentioned, this influx had unintended impact. Some community members chose to move deeper into the woods to create more distance. Many of the helpers lacked the experience, the relationships, and understanding needed to respectfully engage with that community. And their presence felt intrusive rather than supportive. During these emergencies and the pandemic, information was not shared in accessible ways. Organizations like Green Mountain Self Advocates made accessible public service announcements in plain language. And on a regular basis, staff advocates, as you've heard today, at the beginning of every emergency continue to remind the media and the governor's office to provide American Sign Language interpreters fully on the screen so Deaf or Moderners are getting that information in real time. The fact that this is still not baked into a regular practice feels like outright discrimination to me. One TV station asked me after I called during an emergency years ago to advocate for an interpreter to be shown fully on the screen. And he said to me, leadership within our media, not to be disrespectful, but how many deaf people really live in Vermont? They had to worry about the optics of the screen instead of how to get the information to that community. That's the type of attitudinal communication barriers that cause people to die during emergencies. The pandemic has also been a place where so much has changed, but when it benefited more of the general public, the public health emergency was lifted. But even when VCIL was advocating for masking, testing, and vaccinating because our peers were still at risk, it was met with nothing. Our state actually gave away parts of the stockpile that we were begging for. We have so much information on ways we ask for help from different departments that was literally met with nothing. In order for these systems to really respond, it needs to include all parts of government because our systems of support to people with disabilities is across different parts of government, all with different experiences or plans around emergency prep and response. These examples and frankly, a lot more that are all symptoms of systematic ableism where emergency structures were built assuming non disabled bodies needs and communication styles. In terms of the bill, VCL is in support of the requirement that emergency management systems incorporate disability expertise, including people with lived disability experience and adopt the SEVIS access and functional needs framework to identify and accommodate disabled people's needs. These changes are essential and the implementation will only succeed if Vermont addresses the structural issues that repeatedly undermine safety for disabled residents. Having a focus on functional needs of the barriers that are around us for a lot of different communities of people, including people with disabilities, culturally deaf people, but also people experiencing homelessness, elders, people without transportation, etcetera. And it allows us to have important information to aid in preparation and response to emergencies. And in the written testimony, I've provided some links. In California, they developed an office of access and functional needs that you can see in the link. As we look to the failures of the current system, H901 has a requirement that emergency plans explicitly address shelter citing, universal access, accessible communication, and diverse functional needs response directly to those, and it responds directly to those failures. We really appreciate that the bill stays away from relying on disability disaster registries, which tend to put the responsibility on individuals and systems that don't always have safeguards. While some people appreciate having emergency response cards and systems around that, they need to be embedded in a way with people who are very well trained in health record confidentiality and understanding. BCL has offered skill trainings to individuals who develop their own emergency response plans, and we receive money from local businesses as well as the Vermont State Independent Living Council to support emergency kits that people with disabilities build themselves from their own personal needs, which go beyond the sort of one size fit all emergency kits that we see out there now. We appreciate the requirement that the municipalities partner with disability led organizations across all phases of emergency management, which moves Vermont towards a more just, equitable model rooted in community power, not paternalism. We recommend that that be compensated. By putting this requirement, we know that municipalities will reach out and ask for names. We already know that they're going to reach out and ask us for names of disabled residents to use that information and build their plans. The emotional toll it takes for individuals to participate in these efforts of working groups will be immense. And we have lots of examples of how people with disabilities have been used and reports are put together by the quote professionals, and then they override the lived experience expertise. As testified to earlier and in other committees over time, there's a critical missing piece that emergency systems rely too heavily on volunteers. Vermont's emergency management infrastructure, especially the municipal level often depends on well intentioned but untrained and under trained volunteers. When volunteerism is a proud part of our Vermont identity, the model has repeatedly failed disabled people because volunteers are often not trained in disability rights, the ADA, or inclusive practices. And I will say that we provide technical assistance and training, and we have partnered with all of the entities as well as the Council on Rural Development. There's still missing pieces here. Many do not understand access and functional needs of community accessibility. Volunteers may have unintentionally caused harm by making assumptions about a capacity, mobility, communication, or medical needs and breaking confidentiality. Emergency roles change frequently, meaning knowledge and training are rarely consistent or retained. And when volunteers, rather than trained professionals or disability informed staff, are responsible for evacuation, shelter operations, communication or transportation coordination, disabled people face disproportionate harm. And this overreliance on untrained volunteer labor is not sustainable and it does perpetuate inequity. This bill provisions requiring consistent standards and training, accessible communication, shelter operations, and planning created pathways to correct this. But to succeed, training must extend far beyond paid staff to include those volunteers on who municipalities rely on every day. And without training, systems designed to protect disabled Vermonters will continue to fail them. And training should be led by disabled and deaf people. To fulfill H901's requirement that people with lived disability experience participate in emergency management bodies, Vermont must ensure that participation is accessible, including remote participation, transportation supports, multiple communication formats, and flexible scheduling. And as I said, participation must be compensated. Sharing lived experience is expert labor. Stipends are essential to prevent exploitation of disabled Vermonters whose insights are foundational to implementing this bill. In Florida, Centers for Independent Living have contracted partner in the mass response work. I've included a link to their contract. And in Vermont, would look a little different. We only have one center for independent living, but we have a coalition of deaf and disability led organizations that could be connected. By providing compensation, Vermont affirms the leadership and value of the disability community members consistent with the intent. In addition, we have strong partnerships with the Partnership of Inclusive Design Strategies led by disabled people who are experts in disaster prep and response, and I encourage the committee to ask them to provide testimony on this bill. We've been involved with them supporting two important federal pieces of legislation. I've also linked in my testimony in case you don't know about them. It's the Real Emergency Access for Aging and Disability Inclusion for Disaster Act, which we call REDI, and the Disaster Relief Medicaid Act, which is very important in its derma. And we've held town halls in the past and we've gathered content that also might be helpful to the committee to have to go back and look at some of those recordings of folks with disabilities and their experiences around emergencies. There was a lot to unpack and I've tried to give you as much detail but have so much more experiences that we could share. Overall, we're very supportive of this bill that centers people with disabilities, their experiences, and move to address any inequities that far too long have caused harm to individuals living in Vermont. And I can't thank you enough for taking this up and having a conversation with us today. Thank you.

[Matthew Birong (Chair)]: Thank you so much. Did anyone have a question? Comments? Alright. Well, thank you very much. I appreciate all of you coming in, talking to us, sharing your experiences. And we're looking forward to having you back if we need more testimony and just really appreciate your time and attention. Thank you. Thank you all. All right, I think we're good. We have one minute. Do you want to take a break or are we going to keep going?

[VL Coffin IV (Member)]: If you're done with this, a testimony, it'll take us off for a couple of minutes and we can get re situated for the next All time on the

[Valerie Hughes]: right, we're going

[Matthew Birong (Chair)]: to get organized for our next witness. Thank you all so much for coming.