 Welcome, everyone, to another crisis conversation live from the Better Life Lab. We're thrilled to have a great panel and we're really excited to hear from you all in the chat, hear your perspectives. Today we're going to be talking about something that is pretty much something we haven't really talked about or really confronted in the United States and that is elder care, long-term care. We talk about we're having this aging population, we're going to have this elder care boom and a crisis, and yet there's very little that we're talking about it aware of it and the pandemic has just brought it crashing center stage. And so now we're talking about how we're not prepared, how the nursing home population makes up less than 1% of the United States population and they make up a disproportionate share of the fatalities from COVID-19. We're going to be talking about home health. That's what we're focusing on today, which was seen as an answer to nursing homes. And that's an incredibly difficult job. Most home health workers make very little money. They are sort of the working poor in many ways, don't have access to benefits or paid vacation or paid sick time. And yet what we're focusing on today is that it's very different in one place and that's Washington state. And so I think what I'm excited about today is that we'll be talking about a real challenge, but through the lens of a place that's really working hard to try to figure it out and maybe has lessons for all of us. So what I want to do is start with Brittany Williams. Brittany, thank you so much for being on the on the panel today. What I'd love for you to do your home health worker. What I'd love to do is start with let you introduce yourself, tell us where you tell us where you are and and then tell us your tell us your story tell us about being a home health worker where you are in Washington. Yes. So hi everybody. My name is Brittany Williams. I am a home care worker in Seattle, Washington. I work as an agency care provider and also through DSHS as an individual provider. And so it's really interesting I've been doing this for six years now. I also serve on our executive board for our union. So I get the opportunity to see the situation from the viewpoint of caregivers who are getting supplies and PPE through their agencies and caregivers who are having to fight the state for literally every single thing. So, Brittany, if we could, if I could interrupt you for just a second, you know, for the people who can't see, you know, on the on the YouTube video here. Where are you, you're sitting outside. Can you tell us a little bit about where you are right now. So right now I'm at one of my clients with one of my clients right now. She allowed me this time because she knew how important it was to share this story. And so I'm actually on the balcony of her apartment complex. And I just, I'm very grateful for her because, you know, it's clients like her who are supporting caregivers to make sure that not only the clients are protected but we're protected as well. So, you know, so Brittany, so you've been in Washington state for about, you know, a couple of years you were saying, and one of the things that really struck me when we were talking before is that there's a fairly decent wage. And you have some benefits that carry the home health aides and care care workers in other states simply do not have. Can you talk a little bit about that and what that means and in terms of helping you, you know, not only have good work but also support your life. So I'm a third generation caregiver and my mom and grandma does the same job in Arkansas where there are no unions for caregivers. They're up here we have we won a starting wage for $15 for caregivers. They don't have that we have health insurance for caregivers they don't have that we have We have the first of the first in a lifetime retirement plan for caregivers. We, we provide our caregivers with a free parachute. These are things that Arkansas caregivers don't get. Wow. And I'm very blessed and fortunate for that. So when you talk to your mom and your and your grandmother and you talk about what you know your situation there, you know, kind of what do they what do they think or what did they say, how do they react to the fact that you have sort of the beginnings of decent work if you will decent and dignified work. The conversation is more with my mom because my mom actually was used to live here. And she was here during the fight for 15 and March down to CTAC. And so when she moved back home to help my grandma with the planes down there. She literally went from almost $20 an hour back down to $11 an hour. And it was really heartbreaking to her to see the conditions that people are accustomed to working in. Wow. Well, thank you so much for sharing that Brittany. Peter, let me go to you. So, Peter, I want to make sure I get your title correctly you're with the Catholic Community Services of Western Washington, you're the director of long term care. So you've just heard from Brittany so you know she there in Washington state she makes a fairly decent way she gets paid time off she has retirement she has health insurance. She has paid training. You know that there's a really very unique relationship between management and the sort of the private sector as well as the state. I want to talk about you tell us more about Washington state and, you know, and if it if it's so terrible in Arkansas and other places how did, how did things get better in Washington state. Well it's, it's, I would say it's a 40 year overnight success story because for 40 years with DSHS Department of Social Health Services, the governmental entity that the interacts with the feds have taken a lead for 40 years. They've worked on planning this it's constant constant tinkering they've worked with nonprofit associations with unions, especially yes you use 775 they work with local area agencies on aging. And in our state. For our clients, we offer very similar services in many respects the same as what you see in a nursing home. Many clients are bed bound, any toileting bathing transfers. They have to have a high level of need to even get on the program. It's one on one care which is one of the bigger things we actually hire a lot of caregivers used to work safe for nursing home because they were tired of the eight or 10 or 20 people they saw every day. They just wanted to work for for one person. And it's also a fraction of the cost of nursing home so it's something people want it's it's that offers at, I think some pretty good employment opportunities as Brittany had mentioned all the benefits. And it's also much cheaper. So the, the, the states like the taxpayers like it. It also has all of our caregivers I mean when this, when this virus started. It was, we were set up really well to whether the pandemic because our caregivers, as Brittany can attest to. They are taught infection control is drilled into our heads. Every caregiver has 75 hours of training they have to go through. They have to become a certified home care aid, which is like a CNA certification that might be one of the few in the country that actually do that. And as part of that certification you actually have to have pass a written test and a skills test which includes proper hand washing. So when all of this came up. We simply sent a memo to all of our staff saying, remember what you're doing, keep on doing it, because it was almost exactly word for word what the CDC was saying that we should do. We ship a DSHS. I can't say enough about them. They have been incredibly nimble. Most times the government gets a black eye for being a giant bureaucracy, but they've been very nimble, very precision like on what they've been doing. They informed us right away when there was deaths in the nursing home. I think it was 10 o'clock at night, all 50 home care agencies were notified. They set up a weekly meeting. Almost immediately, we change things around and stop things here. We stopped in person assessments in home visits with the clients, just to limit the amount of bodies that we're moving back and forth. We stopped taking clients to the store, which I know a lot of our folks that we serve did not like, but just like a lot of things, a lot of things that we're doing, nobody likes it, but we have to do it. Anyway, we've asked caregivers to take their temperature before they go in to ask the client their temperature, all of these things that we're all doing now. We've asked them to do local health districts if somebody did become ill. And at the beginning, I think everybody thought they had it. Because everybody with a fever or sniffles kind of panicking and we've, over time, I think we've got it down pretty well and how we handle it. The most important thing DSHS did was allow, I mean, most folks are working from home. Our caregivers can't work from home, except they change the rules to allow our caregivers to do things like do welfare checks to call up clients, maybe do, maybe do their laundry, maybe do things as much as they can possibly from their own home. You can't do personal care from home, but so DSHS has just been incredibly helpful in trying to change things. Well, that's great. Well, thank you so much, Peter. Let me go back to you, Brittany. So Peter said that because there is this training because you've got this, this sort of management and labor relationship in Washington State. It's pretty much up to speed. So what was that like for you transitioning from regular care into the pandemic? You know, you know, did you feel ready? And then did you all get the protective gear that you needed? You know, what was that like in terms of protecting your own house so that you could also protect others? So I'll talk about it from the two different aspects of it on the agency. Well, across the board, yes, we were already knowledgeable on how to protect ourselves. Like Peter was saying, we've been trained. We actually, every year we're required to go back and take 12 more hours. So we were up to part on that. Now on, and as far as the agencies have been amazing across the board, as I say, I sit on the executive board. So I'm able to see what each agency is doing. And they've been amazing. I wish that the people at the federal level could run the government. Like our agencies have been stepping up to the ball play. On the IP side, it was, it was a whole, it's a whole nother game. It's sad to say it took the state two weeks before they even acknowledged that we needed face mask for the independent caregivers, the IP caregivers, and they have slowly but surely started to roll out face mask to all the IPs. You see, I work for, they, like I said, they're just like Peter's agency, they stepped up, they made sure we had face mask. No, it wasn't a lot, but they did what they, what they could, and just they've been building up on it to now that you get a full PPE bag which consists of face mask hand sanitizers, a bar of soap paper towels, disinfectant spray to clean down surfaces and stuff. So this is what it looks like. Wow. Well, thank you, Brittany. Alright, so now Steven, let me bring you in at this point. So you're with PHI. It's a, where you really research and look at these elder care long term care issues you've just written a report I put the link of to it into the chat. Yeah, and it's, it's called we can do better. So what I'd love for you to talk about now we've had Brittany and Peter talk about their experience in Washington state, and even Brittany saying she wished the federal government was as effective as the state government which is, you know, we've got so many people who like love to hate on the government and public policy so here you've got people saying great things about how the government works. Can you put Washington state in this larger perspective. What is it that we're facing as a country. How are we facing it or not and kind of where does Washington state and what they're doing where did they stand relative to other people. In so many ways, Washington state is a national leader in job quality that's thanks. In part, as Peter mentioned to strong leadership in the state government, and also is as Brittany cited their strong leadership among caregivers in the union, working together with employers in the state to really build these decent high quality jobs with effective training and higher wages. Nationally these things are so lacking. This system is largely dependent on Medicaid, which unlike Medicare and Social Security has to compete with all of these other budget priorities and state legislatures every year. These programs are viewed as serving people who are living in poverty and people with disabilities who are largely undervalued society. And often these Medicaid programs are losing those budget battles and not getting the level investment that they need to support a quality job. But there's another societal aspect to it related to the people who do this work caregiving is viewed as part of the uncompensated domestic responsibilities of women and for these reasons these jobs are lacking in respect to the extent that they are deserved. These jobs are often performed by people of color and immigrants who are again society marginalized and these jobs again are undervalued and under compensated for those reasons. And then a third element to this is that this is a highly fractured system where we've seen this explosive growth in the home care field and unlike Washington state. Many other states might not even know who the agencies are that are delivering these services. So all of these factors combined mean that when we're facing this pandemic. All of these challenges are especially highlighted because we don't have the funding to afford these crucial things like personal protective equipment or training on assisting people during a pandemic or hazard pay, or any of the things that workers need to be successful in the field. And at the end of the day, go ahead, Bridget. Let me interrupt you there you say we can't afford it and I guess what I'm wondering is, is it a choice that we have chosen not to invest in it. And you know, because if we can, when you look at the size of the federal government and what we choose to invest in I guess that's, I just kind of wanted to interrupt you is that really that we don't have the funding for it or we have made the choice that it is not important enough to invest in. That's an important clarification. When I say we are referring largely to employers or to these government agencies who are running these programs. But again, the lack of funding the system is reflective of our values and how much we value this work, despite the fact that these services are so critically important to all of us because many of us will develop disability at some point in our lives and if we love will. And at those points in time we're going to have to turn to the the strong paid caregivers like Brittany and others. But because these jobs are so poorly structured and the system above them isn't supporting them well. It's very likely that when we need those workers the most, we're not going to be able to find them. Well, you know, it's it's interesting to listen to all of you, you know, just from a from a personal perspective, my father, the last five years of his life he passed away not that long ago. He was bedridden he'd had three strokes. My mother was also, you know, in her late 80s she couldn't do all of that work. And we relied on in home, a home healthcare, you know, in home aids. And you know, when he passed away, his final moments, thankfully my mother was there, but also his, his home health aid Priya from Ghana. So, you know, this work is so vital it helped him, you know, have quality of life it helped him stay alive and, you know, you develop these really intimate relationships and and she was there. You know, and it's final moments on earth. So, you know, when you talk about what we value, you know, it's, it's astounding to me that this is that that this incredible value is not reflected in our national policy or in our debates. You know, that this is seen as sort of this uninvisible labor of love, which, which really doesn't reflect the fact that so many people so many families are working. And that they just you just don't have that person to take care of everything at home in the way that maybe many families or some families did, you know, 4050 years ago. One thing I'd like to bring up at this point in the last few days, there's been sort of an explosion of news. There was a home health aid in New Jersey, who now faces criminal charges. She was apparently she tested positive for COVID-19. She went to give care. The elderly person she was taking care of then contracted COVID-19 and passed away. And so now she's facing criminal charges. So Peter, let me let me go to you. You know, is that a fair response? Is this a, you know, is this a fair thing to to blame on a home health aid? What does this say about our larger system? Well, it's it's interesting that this news is popping up about individual home health aids, perhaps getting a suit or in trouble. When you have the opposite end, which is many of the for profit nursing home industry is there being exempt from being held accountable from lawsuits and you've got one group individual people, all of us through this pandemic, I think our heads were spinning. First, it's one thing, then it's another. It's hard to figure out what, you know, what all the facts are. But what I do know is anybody in this business has good communication on what infection control is what you need to do. So the companies that own these for profit nursing homes, they're not being held accountable for something that they should know. And yet we're holding individual people accountable. And I find that to be very disturbing. What about what about you, Brittany, you know, when you heard that news, you know, you're on the front lines there, you know, you need to be thinking about your own health but protecting the people that you also work with, you know, what what do you think about that that, you know, the the state could charge a home health aid face criminal charges and the situation. I feel that it is very irresponsible. I totally agree with Peter on the this bias situation where the nursing homes are getting basically away with murder, but you want to, you want to point out caregivers. It has been scientifically proven that people can be asymptomatic, not even know that they have it, and they're walking around. So are you going to tell me so are they're going to tell me now that every single person that comes in contact with COVID is going to be charged our face murder charges. That is, I think their focus is way off, way off. Thank you so much for that Brittany is Stephen let me bring you into this and I neglected to introduce you last time properly so let me do that so you're Stephen Campbell. I'm a data and policy analysis with PHI and the author of we can do better how our broken long term care system undermines care. So Stephen, let me ask you that that same question because it is really quite disturbing to see that, you know, many of these caregivers. They don't have access to something like paid sick days or paid family leave. And so for many of them, if you're asymptomatic you don't know that you've got the virus. Many of them there were there like Brittany's mother, they're making poverty wages really $11 an hour and if you don't have access to benefits. You really have to make a choice do I do I go to work do I stay home and then how do I pay my bills. And then that does put the people who who rely on the care at greater risk so it seems that there's something really systemically wrong here. And you were saying that this is there are a couple other cases as well. You know, talk a little bit about what you're seeing happening during the pandemic that kind of really show the system isn't isn't really working. Right. Well, I mean certainly this the story is is a tragedy right I mean this is a death that could have been prevented. We're to prevent harrowing situations like that in the future we need to write, ask the right questions. And I don't think the right question is how could this person be so irresponsible to do this. You know, without more information I'm not going to make any sort of blanket statements about who's at fault, but I think the right questions are. So, for example, this individual wasn't wearing PPA PPE, the personal protective equipment, does she have access to personal protective equipment, and if she doesn't, why not I mean it's her agency not getting the equipment that they need. Maybe this person wasn't aware that they had paid time off available to them, or even if they did. And I'm not surprised that their employer was going to respect that right and not commit wage theft, and also was this individual confident that if she did take time off because of her positive coven diagnosis. Was she confident that someone would be there to take her place in the context of a nationwide workforce shortage. The job seekers being told it's not safe to leave your home. We're having serious pipeline issues and workforce supply issues that were already happening before this sort of narrative around home care workers and direct care workers as villains in the field as sort of widespread fraud and abuse is just not reflective of the truth the predominance of workers in this field are folks like Brittany who are really in this pandemic laying their lives on the line. On behalf of their clients and their loved ones and they may not have a choice around taking time off because of their own economic instability. There's so much broader context around these sorts of tragedies that are happening in the field. And if we don't ask those questions around what can we do better. We're not going to make the meaningful changes needed to support both consumers like the person who passed away and workers like the person who inadvertently was a conduit for the virus. Well thank you for that Stephen. Brittany let me go back to you. You know you talk to your mother and your grandmother in Arkansas so you know you know what you know the experience of home health workers are in other places. What would you hope that will learn out of this pandemic what would you hope that from either from your experience in Washington state what do you what do you hope or what do you think needs to change so that more home health workers would have the experience like you do where you do feel supported where you do have decent pay where you do have the equipment that you need to do your job to protect yourself but also to protect the people that you're caring for. What do you hope that will learn out of this pandemic. I appreciate Stephen and everything he's saying and I also want to make this note so that people will understand caregiving is a job that we have to be there. But if we don't have legitimate reason for not being there we can actually be charged with neglect with our clients we cannot leave this is a job that you cannot leave your clients uncovered. So that is one big thing that I feel like should have been put in that news report. The other thing is it is amazing to live in the state of Washington but at the same time we got to be better with the process we have to be more expedient with the process because with one caregiver I won't say her name but when the PPE finally got to her it was actually too late her and her son had already contracted it. Oh wow. So are they okay now. You know they have to go through the process. They're in our prayers and everything. But the thing is we have to we have to stop just assuming stuff. And like Stephen said we have to look at the broader picture caregivers are just as important as the frontline workers. You know the frontline workers are the ones saving life caregivers are the ones maintaining life. Yeah and as we are maintaining life. It's not fair just to protect the ones saving it you have to protect the ones maintaining it because we have to go to the stores we have to go to the pharmacies the laundry match. We have to go interact with all these places that our clients can no longer go. Wow. And you don't know who you're coming in contact with Bridget is it can be very scary. I can only imagine. And you have so many like it was said earlier 80% of our caregivers are female a large chunk of more people of color. A lot of them are like my grandmother are in that age group that is more susceptible to getting this disease. And so we have to just bring a more wider focus that we are the maintainers of life. If you want to know what a caregiver is that it in a nutshell we are the maintainers of life. Well I love that. Well, that is a probably the best place to end this conversation is that, you know that we need to be thinking and valuing not only those who save lives but those like Brittany, who maintain lives and those like we had Maryland, last week who is also a home health aide in, in Texas who doesn't have paid sick days, and that what you're doing is incredibly valuable and important work. So I'd like to thank all of the panelists for being on the part of this conversation today. Thank you so much Brittany Steven and Peter. We're so happy to have all of your perspective and experiences. Thank you to all the participants who have signed on. And I'd like to also thank my great better life lab team, New America, New America events and my producer David Shulman. We hope you'll join us again next week we're going to be looking at the emergency paid family and medical leave act that Congress passed, and looking at there are some, some people who have it and it's really helping their lives and their people who do not. And we'll be exploring that kind of have and have not attention next week so we hope you'll join us again. So thank you so much and stay healthy and safe. Wash your hands. We'll see you next week.