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COVID-19 Raises Health Concerns For Vermonters With Disabilities, Older People

A sign for Genesis outside Burlington Health and Rehab
Elodie Reed
VPR File
Burlington Health and Rehab is one of the nursing homes with a deadly COVID-19 outbreak.

Note: Our show is produced for the ear. We recommend listening if you can! But we also provide a transcript below for accessibility and reference. 

People in long-term care facilities like Burlington's Birchwood Terrace and Burlington Health and Rehab are at high risk for COVID-19. Both facilities have had outbreaks and deaths due to the coronavirus. Vermonters with developmental disabilities are also concerned for their health and getting the help they need during the pandemic. This hour, we get an update from the Department of Disabilities, Aging and Independent Living, as well as hear personal stories from the Vermont community. 

Our guests are:

Broadcast live on Monday, April 20, 2020 at 1 p.m. Rebroadcast at 8 p.m.

The transcript

Disclaimer: Transcripts are generated using a combination of speech recognition software and human transcribers. They may contain errors, so please check the corresponding audio before quoting in print.

Jane Lindholm: This is Vermont Edition. I'm Jane Lindholm. As we know, advanced age is a risk factor when it comes to COVID-19. And people who live in group settings like independent senior living or assisted living facilities are at additional risk because of the close quarters.

One of the state agencies that helps to address issues that aging Vermonters face is DAIL. The Department of Disabilities, Aging and Independent Living. Today on the show, we're going to talk about how DAIL is helping people in lots of different kinds of situations, access the care they need, the assistance they require, and figure out what to do about unemployment and all the other things Vermonters are dealing with during COVID-19.

But before we hear from some of the other voices today, let's get an update from the commissioner of the department, Monica Hutt. Commissioner Hutt, welcome to the program. 

Monica Hutt: Thank you so much for having me. 

Jane Lindholm: So has DAIL played a significant role in the state's response to COVID-19? Because, you know, the press conferences that have all of these members of the administration, DAIL is not a frequent contributor, but I imagine behind the scenes you're still doing significant work. 

Monica Hutt: That's absolutely true, Jane. And I think the department itself has been engaged from the very beginning, sometimes feels like this is really the only thing we're talking about. And that's been true since, well, gosh, early March, middle of March. And we've been doing that really in partnership with our sister agencies.

So working with the Department of Health and working with the Department of Mental Health and really closely with the secretary's office, because as you well know, older Vermonters or minors with disabilities. Certainly that's our primary population and our primary area of focus. But they connect to the state government in a lot of different ways. So recognizing that we are not an island when it comes to these populations and that we need to connect across the board has been critical. 

Jane Lindholm: What are the people who are in the populations you serve reaching out to DAIL for help with? 

Monica Hutt: Oh, gosh, that's a great question. So I think about it in two really distinct ways. First, are all of the individuals, individuals with disabilities themselves, individuals, families of individuals with disabilities are older Vermonters. We certainly hear from them directly and have been working with our providers and our partners in the community to meet and address their needs to answer questions.

But also, we've got a lot of providers in our network at DAIL. And so we have been working closely with those providers to answer their questions, to offer guidance and direction, to push out information from the Department of Health, from the CDC or from CMS around Medicaid, but also to craft guidance and direction and offer suggestions and and practices from DAIL ourselves. So it's really those two big population groups, individuals themselves and families and all of our providers. 

Jane Lindholm: And can you give me a couple of examples of, you know, either one of those groups, what people are reaching out about, like "I don't know how to do this," or "I'm struggling with this."

Monica Hutt: Yeah, sure. So when I think about our residential care providers, so nursing homes, but also our smaller residential care facilities or therapeutic community residences, lots of guidance about how to do it, how to manage a residential setting in terms of best practice when residential settings can sometimes be very small. So how do you handle isolation? How do you handle cohorts in the staff? How do you get that protective personal protective equipment, PPE that you need? What is the most up to date guidance? Can you sort it through? Can you make it clear and easy for us to understand what I think about some of our older Vermonters?

It's questions around Meals on Wheels and how do we continue to get those delivered to us and for the providers that are delivering Meals on Wheels, how do we do this safely? What would you suggest? What kind of equipment can we use? Are there standards that we can promulgate so that we're keeping our volunteers and our staff as safe as we're trying to keep the individuals that are receiving services for individuals with disabilities. Especially those that are in services with our designated agencies or specialized provider agencies.

It's trying to understand how service delivery can continue in more creative ways and what that looks like and what the standards are that we're holding our agencies accountable to. It has been you know, you name the question and I feel like we've gotten and tried to answer it or at least have tried to figure out where the best answers are and push those forward. 

Jane Lindholm: Commissioner, one of the things that may be different for some people, when we're talking about elderly Vermonters and aging Vermonters, is that there are a lot of aging Vermonters. You mentioned Meals on Wheels, but who live independently, not necessarily in a group setting, but who really rely on services, whether it's somebody who comes in to help with health care or with cleaning or whether they go to somewhere to have.

A social setting during the day and some care and a lot of those things have changed. If they're accessible at all, certainly going to a center is not necessarily accessible for an afternoon. So how are you helping people get the services that they need or that they have relied on at the very least for perhaps years? 

Monica Hutt: It is such a great question. And I think it's indicative of two really important learnings that we've done and had through this process. The first was recognizing that our populations, the populations that we are focused on a deal are probably most vulnerable to this virus and that we needed to be really creative and aggressive in thinking about how to do business differently.

And the second being that the long-term care, people tend to talk about long-term care as primarily facility-based. But in Vermont, we have to remember that we've done a really good job at making sure that people can stay in their own homes and in their own communities and still really receive the care that they need to be independent and to stay active and connected to their community.

And it's been interesting to work with the Vermont Department of Health and our hospitals and all of the guidance and realize that we had to broaden all of it to include these community based settings. So working with some of the entities like home, helps to define what are really essential services and how do you deliver those safely.

When I think about the work that we've done with some of our designated agencies, shifting populations a little bit, but also considering how we provide long term care to individuals with disabilities, working with those agencies to think about really creative ways to connect and stay connected. And that's true across our older Vermonter communities and also our Vermonters with disabilities really using the telephone and Facetime and Zoom or whatever the other platforms are to connect with people in their homes without actually physically being present.

In a lot of instances, though, that care does need to continue to happen in homes. Sometimes it's critical physical care that still needs to take place. And so setting the guidelines for what those essential services are and really encouraging people to think about how that can happen.

I had a really interesting conversation last week with some representative from our home health agencies and they talked about being really intentional, about setting the schedule for home care. Recognizing that if they knew that somebody might be symptomatic or showing signs of being positive, that they might change the time for those visits in one section of the day so that workers were not moving from that one setting to another setting and creating more opportunities for transmission of the virus. So there's been a lot of energy and work about how to keep delivering services.

Some wonderful stories from some of our area agencies on aging in senior centers that are doing things remotely or by video or driving. By the way, that home delivered meals are continuing to flow, even though there can't be as much contact between the volunteer driver and the individual receiving the meals.

Just many different strategies around how to keep essential services flowing in. And with all that, I suspect that we're still missing things, that there are still things that are not working as well as they can and should. But this has never been more true, the analogy of building the plane as we're flying in. So we learn every single day and modify and work with providers to modify every single day. 

Jane Lindholm: I read in VTDigger from Grace Elletson that you and the state requested a waiver from the Centers for Medicaid and Medicare Services to reimburse family members who are caring for children who have disabilities, who might usually have some in-home help with that. And instead, the family members are having to shoulder that care burden. And have you gotten that? Are our family members going to receive compensation for the additional work they're doing? 

Monica Hutt: Yeah, we have had to be really creative about how to do that. But we did seek permission from CMS and we received permission to do that. And so we pushed out, I think April 10, is actually guidance to families and to providers with three different strategies embedded in it that would enable families to utilize the dollars that are in their service packages that are being used right now since services can't be delivered. So to convert those dollars into almost a difficulty-of-care payment for families, kind of a stipend.

That was one area of focus and then another area where there was just if there were no dollars to convert, that there could be a pure stipend to families. And then finally, some additional dollars to a specific program that is typically utilized in home. So we tried to again be comprehensive and think about it a couple of different ways, several different ways for that to happen for families, because they do have kids. Whether those are young kids or adult children at home right now for obvious reasons and for good reasons, but trying to make it as easy as possible for them to have what they need to continue that care. 

Jane Lindholm: We got a note from Susan in Mount Holly who e-mailed in about what it appears to be age discrimination to her, she says, by virtue of age:

"I'm a member of the 'most vulnerable portion of the population.' And I'm beginning to sense the faint whiff of forthcoming discrimination regarding that group as we do move forward and open up our society more and more. No one should be so foolish to think that restricting the right of free movement based on just one criteria will stand. I'm happy to stay home and do my bit to flatten the curve now, but I will refuse to be placed under some sort of soft house arrest for a crime I have yet to commit based solely on my age."

Commissioner, how are you seeing that? I mean, there is a lot of concern for aging Vermonters because the older you get, the more of a risk factor it is to have a severe case or to die from COVID-19. And yet, you know, there is this sense of you can't just quarantine all older Vermonters while younger Vermonters get to go out and lead their lives at some future potential point. 

Monica Hutt: I absolutely haven't heard anything like that. And I cannot imagine at all that Gov. Scott's administration would support anything that looked like that. I think that we have to remember that age is a factor in this virus, not simply because of the chronology of it, not just because of the years, but because it tends to create some complications and underlying health conditions. I think it's compounded by any kind of underlying health conditions.

And so I certainly can imagine that we would continue to encourage people to to be maintaining social distance, to be cautious. You know, there may be some continued conversations about wearing masks in public if you feel like you are at particular risk. But I know that the goal is that Vermonters will move forward altogether as we do this and we will, you know, make allowances and hopefully support people to stay as safe as possible.

But, you know, I think that even the way that the Stay Home, Stay Safe was worded was really a request to Vermonters to do the right thing. And I imagine that that's exactly how we'll continue. I can't imagine there being any specific discrimination. That's just not something that we would tolerate here in this state. 

Jane Lindholm: Let's go to Kristina, who's calling in from Barre. Hi, Kristina. Go right ahead. 

Caller, Kristina: Hi. I guess a couple of the big concerns I had was the no warning of shut out from my parents. I had actually seen her the night before and then got an email the next day that this place had closed down, that no one could come in. I bring stuff that, tried to bring my mother a little bit of joy, DVDs, good tissues and a bag of mints. But if people can order all the stuff from Amazon, I don't understand why I can't deliver and I don't know, having quarantined the bag of mints for three days or whatever and then give them to my mother. 

Jane Lindholm: So, Kristina, it's not that you want to be able to, I mean, clearly, you'd like to be able to see your mother in-person and maybe give her a hug or something. But you're saying you can't even deliver supplies to her that get delivered through somebody else at a later date. 

Caller, Kristina: Correct. There's a sign up there that they're not accepting any care packages at all. 

Jane Lindholm: Got it. And so your mother is in a care facility. 

Caller, Kristina: She's at a nursing home, yeah. 

Jane Lindholm: Yeah. So, Kristina, thanks for your question. What do you think about that, Commissioner? 

Monica Hutt: So I think it's a great question. And again, things have evolved over time. One of the things that DAIL has done is has we've hosted long-term care, residential facility, phone calls, three of them, two dates where we have collected as many questions as we can from that provider community and then brought experts from the Vermont Department of Health, the epidemiology team and our own division of licensing and protection, our survey and certification surveyors, our nurses there on the line to answer literally question by question.

In the very first call we had or the second call, you know, there were 45 or 48 different questions that had come in. And we are hosting our fourth call next week. And one of the questions that came up in call number two or call number three was specific to this idea of could the virus exist on surfaces, on plastics, on cloth, on packaging, and some really direct questions and conversations between long-term care facilities and our experts about what to do with things that were coming into the facility.

So certainly there's been no guidance or direction that we've issued that says care packages can't go in. We have offered some guidance and direction about how to safely handle those packages and to make sure that they have time for any virus that might be contained on the surface of things to dissipate or how to clean them off. It's a great if the timing is wonderful. I can make sure that we address this in our phone call with our long-term care provider system next week just to reassure them yet again that there is a way to handle that safely, because I'm sure that people do want to communicate with loved ones and to send some supplies into the facility. And I got to believe that for a facility, it'd be great to have some some support and some extra items coming in.

I'm also really cognizant of the fact that they have been also accommodating new information literally day by day. You know, one of the things that we hear from our long-term care providers all the time is that there is guidance that's coming from the CDC, from the Vermont Department of Health or DAIL on almost a daily basis. And in the middle of caring for people reading all of that can be really overwhelming.

So we're trying to make that really simple. And it wouldn't surprise me at all if people were erring on the side of caution. But that's something we can address in that call next week for sure. 

Jane Lindholm: Thanks for the call, Kristina. I hope it gets easier and I hope you get a chance to connect with your mom one way or another soon. We got a note from a listener who writes:

"In March, with no notice, visiting nurse and hospice ceased providing homemaking services to people. It was helping through the Choices for Care Moderate Needs program. This has left us with many unmet needs. It's even been almost impossible to get trash removed. When will these services be restored and couldn't this have been done in a way that didn't leave people with no help?"

Monica Hutt: Again, I feel like I'm gonna be a little bit of a broken record because the guidance has been upgraded and changed and evolved over time. We did issue memos, memos that the department did to talk about essential services and to really help our provider community to draw distinctions between essential care and non-essential care.

There are certainly some components of the homemaker program that people are talking about in that note that may not have been deemed essential in the first version of our thinking. And as again, as we've continued to evolve, you know, you do recognize that if somebody really can't get trash removed on a regular basis, that can become dangerous very quickly. And so that could become and could certainly be deemed essential service.

I think that home health has worked really hard to keep up with this. And I think we can continue to reach out and clarify as much as we can, recognizing that overall we're really trying to prioritize safety, safety for both the individuals who are receiving services, but also for those workers who are going in, not certainly considerate of their personal safety, but also recognizing that they move from from individual to individual. And what we didn't want is to create opportunities for those staff themselves to become carriers of a virus as they moved from one vulnerable person to another.

So the importance of the essential services is really to make sure that that kind of work was happening only when it was critically necessary. There are certainly pieces of it that are still being delivered. And if there is a need to clarify something that's critical for someone, you know, we are happy to take phone calls. We're all operating remotely, but still getting phone calls. And we can address individual situations if they need to be addressed and are happy to do that. 

Jane Lindholm: Joining us now is Max Barrows. Max is outreach director for Green Mountain Self-Advocates. That's a peer-to-peer organization that helps people with developmental disabilities advocate for themselves. Max Barrows, it's a pleasure to have you on the show today. 

Max Barrows: Thanks for having me. 

Jane Lindholm: Can you talk a little bit about what your work is with Green Mountain Self-Advocates and what you're doing right now to make sure that people are getting the assistance they need? 

Max Barrows: Yeah, I can do that. So here's the thing about the stuff that gets the assistance that they need. So right now, there is so much information about the coronavirus that is not easy to understand. And, you know, we as people with disabilities are having a hard time learning what we need to do.

And for example, when we were told to stay home, a lot of people with autism took that literally and didn't realize that it was OK to go outside of your house. And others were worried that, you know, the police would arrest them if they didn't follow the rules. But now, more than ever, we need people in our lives to take the time to often explain exactly what's going on in a way that we can follow.

And that is one reason why we have been doing so many Zoom meetings, video chat through computer with members of people with disabilities within our organization, within our you know, within Vermont, in our local groups around the state. And just making it easy, making it easy for people to understand.

And also just you know, we also have made a booklet about the coronavirus and we made them easy for people to understand in that way, like with meanings of words that may be, you know, tossed around and stuff. And even just, you know, just simple explanations about what the coronavirus is and what to do and stuff like that. So, yeah, we've been really getting the word out that way. 

Jane Lindholm: Max, how can people get access to that booklet that has the explanations and the definitions of words? It sounds really helpful. 

Max Barrows: Our website has it up.We have all of what we've created up on our website And you will see it when you click into it. And it's pretty much the first thing you'll see when you click in. 

Jane Lindholm: You mentioned, Max, for some people with autism, for example, they took the governor's order to stay home really, literally. You have autism. Is that something that you experienced as well? 

Max Barrows: You know, that's a good question. At first, I was probably wondering what that meant. But then like, I on my own and I can't speak for everyone on the spectrum, but on my own, I kind of was like, OK. It does seem a little bit like too much to say, stay at home. But I think what I kind of figured out also with the help of my parents, like just you know, it doesn't mean like you can't go outside and take a walk or enjoy the fresh air.

But I think it's just the way it's been presented, like through the media and stuff like that. I think it has a little bit more of an anxiety producing way of how it's presented in terms of like, you know, an order like stay put and don't move. As for without much, you know, explanation as to what that really means, I think that's why people on the spectrum and even people with disabilities just thought, "Oh, you know, we have to stay. We can't move. We have to stay right in place and we can’t move."

Jane Lindholm: You know, I'm wondering, you mentioned that a lot of the meetings you're having, Zoom meetings, video conference meetings and doing things in different ways that are not face-to-face. And, you know, I imagine for people who are non-verbal or have limited verbal ability, or don't feel comfortable with that technology, that could be a hurdle for them.

On the other hand, maybe for some people, it's great not to have a literal face-to-face interaction, but to be able to do things over technology while still seeing people. What are you experiencing and seeing others experience like that? 

Max Barrows: I think that a lot of people are beginning to use this kind of technology now that we are staying at home. You know, I noticed that our groups like, you know, first of all, like I said, we have Zoom meetings talking about the coronavirus. We do a few a week, one for the state of Vermont. And then we've done even, I've just seen this across the country like, you know, reaching out to people nationally about the coronavirus and also like people in our local groups that make up our organization. They have like we usually have meetings, that now they're beginning to use this kind of technology we are using kind of having that feeling of like, we can still stay connected even though we are not seeing each other in person.

I think a lot of people are beginning to tap into the technology of the video chat on computer as to, you know, meeting frequently and just also saying hello to each other just on an occasional basis, just to make sure because I know it it's happening all over the place, you know, with family and friends and all that. So I think this is all it's like a good time for people to learn and also to take advantage of the technology in this way, even though we're still aware that not everybody has access to it.

And also, you know, may still have that as a hurdle. But the way I see this is like, you know, I think it's great to stay connected. And I think that, you know, talking to people and just still advocating about what is needed out there in the way that we've been doing in this very, very, very uncertain time. 

Jane Lindholm: Max, we have Monica Hutt with us, who's the commissioner of DAIL, the Department for Disabilities, Aging and Independent Living. Is there something that you would like to see from the state response that you think you're not quite getting yet? 

Max Barrows: Oh, God. I would probably say we appreciate, you know, the developmental service agencies and I think, honestly, we, like we appreciate the developmental service agencies, they are using Zoom and to others being creative and ways to help us out. I would say that one thing that I would really call after the save is like I think that honestly, you know, what we've seen and one thing is the challenges. You know, the agencies have been told to leave it up to them to kind of come up with guidance to how to deal with this. And what I would like to see is the state, you know, kind of come up with the rules for the agencies instead of leaving it to the agencies to do so.

Like I would say like that would be something that I would, you know, really would like to see instead of, you know, the developmental service agencies having that left up to that. It would be better if the state were to come up with, you know, some guidelines and some rules about how the agency should, you know, deal with this time of uncertainty. So that way, agencies will have a direct knowledge of how to go about serving, continuing to serve people in this time of uncertainty. 

Jane Lindholm: Well, Max, thank you very much for talking with us. I really appreciate you sharing your perspective. 

Max Barrows: Oh, well, no problem. And I'm glad that you had me on as a guest to talk about this. 

Jane Lindholm: Yeah, me, too. That's Max Barrows, and he is outreach director for Green Mountain Self-Advocates, which helps people advocate for themselves. It's a peer to peer network in this state.

Monica Hutt, you know, Max was saying it would be maybe beneficial to have some clear guidance that cuts across all of the various agencies and different advocacy groups because it's difficult to have a sort of a piecemeal approach. Are you hearing that from other places as well? 

Monica Hutt: It's a great question. We have set out a lot of direction and guidance for our providers across the state, but also it's not untrue when Max says that we have tried to create some flexibility for providers to really work individually to decide what makes the most sense and how to deliver services in this unique environment. And the entire system, frankly, is built on really looking at individual needs and trying to meet those needs and meet folks where they are.

But I have heard Max, on behalf of self-advocates, expressed that same sentiment before. And so one of the things that we did in response to when I heard that from Max initially, which was several weeks ago, I think he spoke to that in House Human Services in testimony at one point in time. We did clarify, just as one example with our providers, that case management contact did have to happen on a weekly basis. Initially, we had left it a little bit more open ended and asked agencies to determine what made the most sense individually.

But hearing that feedback from our self-advocacy community, we did make a change and require that case management occur on a regular basis, on a weekly basis at minimum, and more frequently if necessary, because we wanted to make sure that people were being connected with them, that there was clarity about the needs from the developmental disabilities community. 

Jane Lindholm: While we're talking about developmental disabilities, let's talk with Kirsten Murphy. Kirsten is executive director of the Vermont Developmental Disabilities Council, which is a statewide board. It identifies and addresses critical issues affecting people with developmental disabilities and their families. Hi, Kirsten. Nice to talk with you. 

Kirsten Murphy: Hi. Nice to be here. 

Jane Lindholm: So Max brought up some of the issues that he's been experiencing and some of the work he's doing with Green Mountain Self-Advocates. Are you hearing similar things or are there other things that are also of issue to you? 

Kirsten Murphy: Yeah. What we've been incredibly busy and getting involved in issues that sort of crop up that we had never anticipated. I know the one that Max has spoken about in the past is this issue of hospitals making it an exception if somebody needs to come into the hospital, whether for COVID-19 or another health reason and there's somebody with a developmental disability. We think that should be an exception to the visitation policy, and that that individual should be allowed to have someone with them, because so often people with developmental disabilities really need an advocate to kind of translate between them and the medical people. So some hospitals are allowing that, but it's not a consistent policy.

And so we've been doing some work around that particular issue. Yeah, I think, you know, I spend a lot of time talking to my members, which is a very diverse group of members. And that helps me, you know, as good a job as everyone's doing. I find pockets of tremendous need. You know, we can debate what services are essential. But when my member who lives in a very rural part of the state has his service hours cut in half, and that means he only gets one shower a week, that, you know, I think that's pushed off the meaning of senseless. That's something too too minimal. So, you know, whether the things come up, you know, whether it's on an individual level or more of a systems issue. 

Jane Lindholm: What about for families and caregivers? What kinds of concerns and stresses are they expressing to you? 

Kirsten Murphy: Well, I've certainly been helping families and they've done a beautiful job. Parents advocate for some financial relief because, you know, families all of a sudden have children home full-time, who used to have a lot of special services in schools. And then, you know, there might be an adult with a developmental disability who's moved back with parents for the time of emergency or who used to have a day program or other things to do in the community. And that's not able to happen right now.

So these families are very stressed, and it has a direct financial impact for them because often somebody has to take time away from paid work. And so the state's been incredibly responsive in using what flexibility they have to try to do some short-term relief for those families. But there's no sugarcoating it for some families, as creative as the state is, you know, there are individuals who just need one-on-one, high-touch kind of care. And, you know, that can't necessarily happen right now. So there are some pretty, pretty stressed folks out there. 

Jane Lindholm: Yeah. And so, you know, what happens and what do you do to help? And how do you reach out to people who are in that kind of situation where, you know, that the the mental health and the needs of not only the person who usually receives the care, but of the family caregivers who are not receiving that wraparound care, and that one-on-one relief are just I mean, yeah, it's more than just stress, isn't it? 

Kirsten Murphy: Yeah, it is. And I know, I think that the longer term mental health impacts from this as well as the kind of regret that may happen to some kids who have special education, and it's not easily delivered online. I think that, you know, we're going to be dealing with this for a while.

Thankfully, Vermont has a really great network of peer organizations, whether that's family to family, self-advocate to self-advocate like Max was talking about. And we all need that component of our safety net as along with all the work that the states and agencies are doing. 

Jane Lindholm: That's Kirsten Murphy, executive director of the Vermont Developmental Disabilities Council. Kirsten, I really appreciate you talking with us. 

Kirsten Murphy: Thanks so much. Have a good day. 

Jane Lindholm: And let's go to Zach, who's calling in from Montpelier. Hi, Zach. Go right ahead. 

Caller, Zach: Hello, I'd just like to make an observation, well, a few observations. I do think there's a vulnerability out there for us in the disability world because we suddenly do have to rely on other people suddenly, particularly if we become ill. That's one of my concerns. I have taken this rather seriously most of the time for the last 31 days. Here are the concerns I have. I'm following as an advocate issues that the long-term care facilities and as well as the mental health facilities, particularly in my capacity as the Vermont Psychiatric Survivors Board Chair. 

Jane Lindholm: Yeah, thanks. Zach, I appreciate you staying with us and sharing your concerns and your questions and good luck to you. Let's talk now with Laura Siegel. Laura is secretary for the Vermont Association for the Deaf, and she's going to speak with us through an interpreter with Sorensen Video Relay Service. Hello, Laura. It's nice to talk with you. 

Laura Siegel: Same here. 

Jane Lindholm: And so, again, you're hearing Laura through an interpreter here, so there will be a little bit of a delay. But it's so great to be able to talk with you, Laura. I'm curious what you're experiencing that feels different right now than perhaps before the coronavirus pandemic. 

Laura Siegel: Sure. So there are several things. For example, the masks, many deaf and hard of hearing people struggle with lip reading. And that becomes quite a barrier. There are a few other things during the governors conference and they first started, they didn't have any interpreters there. And so we had to reach out. We sent a formal letter to them to try and get a sign language interpreter on stage. I did notice that the president of the United States still is not providing a sign language interpreter for his speeches.

But that said, I've also noticed that our organization is providing weekly blogs on Facebookand Facebook Live to sort of answer any possible questions that the deaf community might have. And also on that note, I've also seen quite a few concerns with the speed of the interpreters. I've noticed there's quite a lag with telehealth. And often doctors' offices aren't really equipped on getting a virtual interpreter. And so we know, we typically have a live interpreter come in to appointments, which is not possible right now. And so we're just trying to get a hold of every agency to make sure that everything goes through smoothly and that people are aware. 

Jane Lindholm: Yeah, I imagine that right now having to do so much over the phone or even through video conference makes all of that really challenging. How are you accessing an interpreter like how we're doing this today? Because, you know, it is important to be able to communicate and to be able to deal with health care issues or to get information. Can you talk a little bit about how this interpretation service works? 

Laura Siegel: So here in Vermont, we have interpreter referral services, which would refer to different offices to be able to reach out to local interpreters throughout the state. Unfortunately, since the coronavirus crisis has started, many interpreters have started working remotely for safety reasons. That's been quite a challenge. 

Jane Lindholm: Yeah, it's interesting. I mean, it's just great to be able to speak with you and to do a radio show is so difficult to be able to make sure that we get your voice in, your voice can be heard. So I'm really glad that we're able to do this.

I'd love to ask you a little bit more about masks, because you're right. It's not something that a hearing person would necessarily think about the inability to communicate or to read lips. If that's how you communicate when people are wearing masks, how do you address that issue if you're out and about? 

Laura Siegel: Really, it goes down to gesture and writing notes back and forth, if that's possible. That can be a challenge since we have to stand six feet apart and we can't pass paper back and forth anymore. So we have to be more creative in how we communicate. And here in Vermont, I typically use a volunteer to help me go food shopping and that typically helps, but has really limited my ability to go food shopping recently. 

Jane Lindholm: Have you felt any struggles with isolation or loneliness throughout this pandemic? 

Laura Siegel: Oh, yes, yes, definitely. I just graduated from my master's program and I'm in the process of looking for a job, but I can't really do much right now. So as a single deaf woman with no children, I definitely feel isolated with my friends and family.

But thankfully we've been able to keep touch the Skype and Facetime and Zoom. I can't imagine, back in 1918, when the flu pandemic was going on, how people were able to deal with those sorts of feelings. It's amazing how much technology has changed. 

Jane Lindholm: Yeah, it really is incredible. Congratulations, first of all, on your master's program. That's very impressive. But I wonder also if you are worried about trying to enter the labor market or enter it in a different way with your master's, whatever you were looking to do when so many people are out of work and are going to try to be entering the market as well. 

Laura Siegel: Yeah I've already felt like I've experienced some instances of discrimination. And especially with everything going on right now in the labor market being what it is. It's just been absolutely crazy. Like, I want to go work. I want to be on the front line, but I'm stuck at home. 

Jane Lindholm: Well, Laura, I really appreciate you talking with us. Thank you. And good luck. 

Laura Siegel: Thank you. Thank you for having me. I appreciate it. 

Jane Lindholm: Yes, and thank you so much to your interpreter, too, with Sorensen Video Relay Service. Really appreciate both of you being on the show today. And let's turn now to that was, by the way, Laura Siegel who's secretary for the Vermont Association for the Deaf. And let's go to Marsha, who's calling us from Barre. Hi, Marsha. 

Caller, Marsha: Hi, Jane. And hi to your guests. Thanks very much. I'm a senior with disabilities. I'm legally blind and hard of hearing. And my quick question is, because I don't have a computer or an iPhone and that, and I basically get all my information from the television and radio when you guys are doing a wonderful job.

But a quick question is, because I know time is short. I had heard about a program years ago to call and get either an amplified cell phone or a computer. So I chose the phone. But now I'm wondering, given the situation now and the greater emphasis on a computer, if it's possible to also get a computer, I have a monitor and a large print keyboard that hopefully will be compatible. So I was wondering if anything expanded out. And also if it is, is there any way to reduce the cost of the Internet connection, and the money that we have to pay whoever gives us the internet? 

Jane Lindholm: Marsha, thank you very much for your questions. I appreciate that. Monica Hutt, any way for Marsha to be able to get a computer at lower cost and maybe to be able to access the internet at low cost. 

Monica Hutt: Well, I'll have to be honest and say that I'm not sure about the internet question, although I know providers across the state have been in all of our utilities and I believe that includes the internet, have been trying to reduce the costs of that for people or will forgo that.

I would ask Marsha to get in touch with DAIL and have her put in touch with our division for the blind and visually impaired, because there may be a way to support what she's looking for or even a loan of equipment through this crisis, through our independent living program with the division for the blind. So Marsha can get in touch with DAIL and ask for connection to the division for the blind. We can talk about that more specifically for her. 

Jane Lindholm: Marsha, stay on the line with us. We're gonna get your information and see if we can connect you with DAIL and also see if we hear from any internet service providers who talked to a couple a few weeks ago who are trying to help people who don't have internet be able to access it. And perhaps somebody in your area can help you access the internet at a lower cost or free, you know, especially under the circumstances. Thank you for your call. And stay with us.

Monica Hutt, anything else that people who have questions should know about where to reach out and how to reach out and the various ways they can do that? If you know calling isn't good for you or if writing isn't good for you, you know, how do you manage to get in touch with DAIL if you have needs? 

Monica Hutt: Well, definitely. Calling would be the starting point. And you just, of course, said that if calling isn't good for you, how do you do that? We have a web presence as well as a phone presence. And like I said, we're all still working, albeit from different home offices across the state, but all still reachable if you call the DAIL main line number. There's always somebody that will pick that up.

We also have had since the very beginning of this a team of DAIL staff who are part of the call center for the Vermont Department of Health. But any calls that are related to disability or long-term care gets shunted over to our team and we respond so that we know where we're getting people the right information as quickly as possible. So that's certainly a way to continue to get in touch with us. 

Jane Lindholm: Well, we'll put all of that information on our website. That's Monica Hutt, commissioner of the Department of Disabilities Aging, and Independent Living often known by its acronym, DAIL. Monica, thank you very much. 

Monica Hutt: Thanks so much for having me. I appreciate the opportunity to get this information out. 

Want to get in touch with DAIL? Visit the department's website by clicking here or call (802) 241-2401.

Jane Lindholm is the host, executive producer and creator of But Why: A Podcast For Curious Kids. In addition to her work on our international kids show, she produces special projects for Vermont Public. Until March 2021, she was host and editor of the award-winning Vermont Public program Vermont Edition.
Emily was a Vermont Edition producer at Vermont Public Radio until September 2021.
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