 Good afternoon and welcome to COVID-19 and the disability experience webinar brought to you by the New Practice Lab and the American Association of People with Disabilities, AAPD for short. We are so glad you can join us today. My name is Von Tisha flood and I'm the operations manager for the public interest technology and new practice lab teams here at New America. I am a black woman wearing a black turtleneck and I have short red hair. In August of 2020 AAPD launched a research print to uncover barriers that exist for people with disabilities during the pandemic. Through interviews with stakeholders and individuals from the disability community, many of whom also work as community advocates. AAPD gathered lessons about how public programs intended to support people with disabilities must change to provide equitable recovery through this crisis and beyond. Instead of producing a report, we heard that stories of the COVID experience needed to be told from the perspective of people living with disabilities. We produced a series of stories from individuals who spoke about living independently, striving to thrive professionally and navigating this crisis. We published them on the AAPD publication page on Medium. You can find a link to that in the chat box shortly. We then tied each of the stories to an issue area and provided policy recommendations because we believe putting names and faces to these recommendations was powerful. This work was supported by Blue Meridian partners. Everyone on the panel today played an extremely important role on this project. And I'm here today with Maria Town, who's the president and CEO of the American Association of People with Disabilities. Jose Hernandez, who's the New York City Advocacy Coordinator from United Spino Association. Larry Wenger, who's the executive director of the Dale McIntosh Center. Christina Mills, who's the executive director of the California Foundation for Independent Living Centers. And Nikki Zeekner, who's the research consultant here at New Practice Lab in New America. Our topic today is support for home and community-based services, HCBS for short. Each panelist will have about five minutes to respond to some questions and there will be time towards the end to elaborate further on any points made, along with a Q&A. Before we get into the discussion, I want to share with you the five key issue areas that came out of our research. Number one, federal laws and cash assistance programs were designed in ways that perpetuate poverty in the disability community, and this has created harm during the pandemic. Number two, digital solutions enabling civic life during the pandemic are not accessible for segments of the disability community. Number three, finding direct support professionals, DSPs for short, has always been hard, but the pandemic has made it harder. Issue number four, pandemic responses have not addressed the needs of the disability community. Also, the pandemic has made the disability community less visible, which has posed challenges to the disability rights advocacy. Last number five, the pandemic has increased the need for home and community-based services. With that said, I'll start with you, Maria. Of these five key areas, can you talk to us about why support for home and community-based services is important, the COVID relief bill, and how advocacy efforts have shifted due to the pandemic? Certainly, Vantisha, and this is Maria Town from the American Association of People with Disabilities. I want to pause really quickly to make sure that we're all set up around accessibility. I saw some notes in the chat that people couldn't see the interpreter. Can folks confirm that the interpreter was pinned? Thank you. So again, this is Maria Town. I'm a white woman with long brown hair, wearing red lipstick and a black dress. Vantisha, thank you so much for that question. If you look at the history of disability in the United States, it is one of segregation and exclusion. It is one of disabled people often being hidden away, either in our own homes or within institutions. Oftentimes, it's thought that institutions are somehow safer for disabled people than living in our homes and communities. And we, the disability community, have always known that that is not the case. And the pandemic has very tragically shown this to be true. Almost one half of all COVID deaths in the United States have occurred with people with disabilities in congregate settings or folks who work in congregate settings. And yet, despite this overwhelming data showing the dangers of congregate settings, and by that I mean nursing homes, group homes, detention centers, jails and prisons and more, no COVID relief package that has passed has yet to include specific funding to help keep disabled people in our homes and communities. This is a place where we can help manage our own safety and protect ourselves from, and our loved ones from the virus. Not only is funding for home and community based services, a disability rights and disability justice issue. It is also a gender justice and racial justice issue. So funding for the direct support and home care workforce is also not necessary to make sure that direct support workers, home care workers can make wages that are worthy of these jobs. Home and community based service jobs are intimate jobs, jobs that cannot often be performed when you're six feet away, you know, these are jobs where folks are lifting individuals helping, helping people eat, people in employment. And this workforce is not thought of as a part of the health care workforce so they haven't been prioritized for distribution of personal protective equipment. They have not been afforded hazard pay or overtime pay. Thankfully, the current COVID relief package that was passed by the house and that we are hoping is passed by the Senate does include dedicated funding for home and community based services. It includes what's an FMAT bump, specific to HCBS that would allow home care workers to be paid $15 an hour, to be paid hazard pay and overtime pay, and would also provide individuals who receive HCBS more funding so that they can maintain consistent levels of support. You know, it's, as I mentioned, it's not only disabled people who are often vulnerable to COVID, because of the composition of this workforce. It has been the composition of this workforce shows that they are also vulnerable as well. And so it's this, these groups of people who are being hit incredibly hard with COVID who have yet to receive. Any, any relief whatsoever. What we hope is not only will this current package that again is passed in the house and needs to be passed in the Senate happen, but in a future COVID recovery package that addresses more long term solutions we see a greater investment in supporting home and community based services and ending what we think of as the institutional bias in the United States. Right now, it is much easier for individuals and families to get their insurance to cover admission into a nursing home or congregate setting than it is to facilitate self directed home and community based services. Again, we call that the institutional bias, and our policies need to be oriented in exactly the opposite way. What we need instead is an HCBS mandate. So I'm hopeful, given the where where our leadership is going that we will see that in the future, and it shouldn't have taken this long it shouldn't have taken hundreds of thousands of people dying. But again, as I mentioned, this was a population that was already put aside already in the shadows and so the advocacy on this. It is it has been a real, a real struggle. And I want to really thank Larry Jose Christina and so many of the other people that we talked with about this project who were able to tell us stories of survival. Right now the dominant narrative about COVID and people with disabilities and folks and institutions. It's not narratives it's obituaries. We need stories of disabled people trying so hard to live our lives so that we can determine the solutions on on our own terms and I, I'm grateful for New America and Blue Meridian partners for giving us this opportunity today. So thank you so much for all the stories that we'll share so that you all can get a sense of what those solutions are. Thank you. Thank you so much. Next slide please. There are several factors that can lead someone into a congregate setting in the first place and we developed a journey map to showcase these elements so that you all get a complete picture. So Mary, can you take us through this journey map a bit and tell us why your take on why human to center designer people to center design approach can help policy and decision makers move the needle on supporting home and community based services. Yeah, and thanks, Tisha. I'm a white woman wearing. Can you all hear me. Okay. I'm sorry to interrupt this is Maria. When we put the slide up the interpreter disappeared. I'll wait. Sorry about that you can take the slide down. So I'll just call out some factors and Nikki you can go on with some of the elements of the journey map piece. Sure. So I'm a white woman with long brown hair and a dark top sitting in front of an open window. And so just a little bit of about journey mapping is that it's a it's a visual story. That's that's really what it is underlying. And it helps us tell the story of a person as they go through a process to an to accomplish a goal. And so in our research we use journey mapping to uncover specific pain points in the process that people go through when they transition out of congregate settings and into independent living. And we also did this to, to not only see where the pain points are but then also to see where the opportunities are to address those pain points. So we use journey mapping as a communication tool. So many people that we want to look at our work and hear our stories might not know much about the process of transitioning out of the congregate setting. But we want them to stand in the shoes of those who are experiencing this. So we want to make that process more concrete. So that's what journey mapping, hopefully helps us to do. And Vantisha, just steer me a little bit, do you want me to talk about the elements or George so we part of the journey map. There's a divide between the elements so the person of circumstances that would put someone into a congregate setting was coven 19 quarantine access to visitors, advocates support families and friends for self motivation to make the transition in readiness for independent living, the infrastructures and resource policy side of the journey map that would affect someone either staying in or leaving is the caregiver availability, the length of day, the need for funds to assist with transition costs like moving and furniture things of that nature, housing availability, access to internet and information and policies that send consumers into nursing home unnecessarily. So can you just react to those elements. And I'm just checking in the chat it seems like folks might be ready for that journey map slide again so if it's possible to put it up. I think folks are interested. Yeah. Great. So, so we, you know we captured the process of how folks enter into congregate settings. And, you know, what kind of helped to transition them towards independent living and Vantisha you went through some of the elements that are in that blue section, right. It's a little bit small for me to read but I, but I know this pretty well by now so I know that's what you were talking about. And so, you know, one thing that we heard and a lot of the folks who participated we held a workshop to capture this information. So it was really short actually. We had a number of folks from the disability community who have firsthand experience with this process. Some of whom are on the panel right now had to both Larry and Christina. We, you know, we had them walk us through the journey that they, you know, that they've experienced either personally or, you know, helping somebody else go through that experience. And what we heard were that there are these factors that they're they're like the little things like if you were moving, for example, what helps you move from one state to another. There are all these little details of like knowing the new place where you're going to be living knowing where the resources are going to be. You know, and if it's if it's in a moment like we're in now, when you can't be in person with with other folks, you might have to have access to the internet to see, you know, to find an apartment to understand what the neighborhoods are like to help you get your resources. So that's kind of like what these, what these factors really were, they're really not profound. But that's kind of the point is that that it's actually really simple stuff that, you know, that's not impossible to do but it's just absolutely kind of necessary to make that transition smooth. Thank you. You can. Thanks. Can you talk to us about the CARES Act funding in the ways in which it has helped those transitioning out of congregate setting. Absolutely and thanks for the opportunity and quickly I want to acknowledge the contributions of my employees, my team to this report as well so and thank you for talking with a couple of my staff at Dale McIntosh we are the independent center serving Orange County California just south of Los Angeles. And so, last March and April. You'll recall Congress passed the CARES Act and included in that bill fortunately was approximately 80 or $85 million for independent living centers across the country to respond to COVID-19 and the needs of people with disabilities in our community. And I'm appreciative that that was made available to independent living centers as grassroots community based organizations, a majority of whom are staff are people with disabilities. We are connected to the community, we're able to provide that support, and we know the needs because we're people who have lived as people with disabilities and have this experience. So, I just want to give you an overview of some scenarios that we have encountered, and I am sure that these are not exclusive to our independent living center I know that my colleagues at the other 28, 27 centers across the state of California and around the world have had similar experiences. We've had phone calls, one for example from an 85 year old woman who had spent every dime she had to pay for attendant services, so that she could remain at home and she called us literally at 530pm the day before Thanksgiving desperate for help. We've been able to provide personal assistance services. She's independent living at home today, and is working to become eligible and get on our states and home support services program. Another example, a woman called us she's blind. Almost death in her late 60s was discharged from the nursing home with no real discharge plan. She had COVID and was recovering. She does not remember the journey from the nursing home to her home, which by the way is was not accessible. She had no food, no supports, and no help. There are countless other examples that I could talk to you about that we have been able to intervene and provide those supports for so that folks could make that transition to living in the community. Countless more that centers including ourselves have been able to support people from ever having to enter the doors of a nursing facility, providing those personal assistance services, and a number of other supports to help people remain independent. We've also been able to provide food, PPE and other supports for people who again otherwise would be at greater risk people who literally have not left their home since the pandemic began last March. And that has meant the world to those folks and been a lifeline. I'm so appreciative of the flexibility that we were given with these funds to respond to the needs as they come to us to provide support to people who were otherwise at great risk of being institutionalized and losing their independence and possibly receiving a death sentence. Quite literally. We continue to meet needs in our community. We've talked about a number of other areas, but just suffice to say that COVID continues to be just an incredible challenge for our community. I think the hardest part for us in terms of using these dollars to get folks out of facilities is, we always talked about people in our community to be unlocked away in these facilities, and we're locked out. Maybe we could go in and talk to these folks and, you know, kind of covertly handout information and talk about hey this does not need to be the quality of your life we can help you escape from here we can help you get back into the community and live independently we don't have that access anymore. And I understand why the security and safety of folks living there and increasing the risk of bringing bringing COVID in, certainly warrants, putting some protections in place, but that has been a barrier to us being able to help folks get out of these facilities. So we've really tried to focus our efforts where we can on doing that but more so on preventing folks from ever entering those facilities. Those are some areas I know we again centers for independent living continue to provide those supports and meet the needs of individuals in our community. I think that the need is more overwhelming and greater than what we have the means to support but we're certainly doing our best. We appreciate the, the ability to meet these needs in the community. More as needed, more needs to be done to not just, you know, be reactive and respond to the current crisis, but also to change the system entirely, so that we remove the institutional bias that, you know, that it's easier for people to get the supports from their insurance companies and other places to live independently and have those supports at home. Then it is to be forced to go live in a nursing facility there's just no reason that needs to happen. So I'll leave it at that thank you. I appreciate that lie. For the audience if you have any questions, please start dropping them in the chat and we'll start taking questions briefly. I'm going to start with you all just read it so we can avoid any other screen issues direct support professionals face huge challenges during the pandemic for their limited salaries. Many haven't had access to PPE or paid leave or childcare, making it hard for them to be careful and protect the people they're serving. This came from Bethany Lily who's the direct director of income policy at the art. You're featured in one of the audio pieces in this project, and we learned that you're able to obtain care you need through the consumer directed personal assistance program. Can you share with us your experience living through this pandemic, your ability to secure care that you need and why this program is essential to use successfully living independently. Yes, absolutely. The consumer directed personal assistance program allows me the flexibility of hiring my own personal attended and training them to do a nurse level of care. So, for instance, normally a person would require a nurse to come in to help change the catheter with the CB Pat program personal assistance program. I can have my personal care time and train to change the catheter or dress a wound or do something that a nurse would normally come in at $200 an hour. So now you're paying one home care person to do that, which saves money and keeps a person in the community. So that's one critical issue aspect of the consumer directed personal assistance program. What was the other question. Talk a little bit about your experience. You know, navigating through the pandemic and challenges. The global pandemic definitely the pitfalls of the entire program in the entire system in general. So in the late March, late March, late March of last year, my personal care attendant that was with me for 12 years contracted COVID. And I saw him that Friday. He said, I'm not feeling well, but I'll come in Monday because he knows how challenging it is to get individuals to cover. And I couldn't take that risk. And I told him, no, you know, something I'll see you when you get back. And two weeks after that phone call, he went on a ventilator and a week after that, he passed away. So from the moment he said that, you know, he's not feeling well. Now I needed to scramble to find someone to help. So my night aid started working seven days a week. And my weekend aid that was working nights needed to shift to days and cover, I think it was four shifts, and I needed to ask a friend to borrow one of their days to cover two shifts. So, you know, as a community, we all help each other to make sure that I can stay in the community and not going to a nursing home. And thankfully that happened. And now I found myself in a challenging position of finding someone to, I can't say the word replaced because no one would ever replace my aid and essentially my family number, but someone to cover the shift that he used to have. Now, I reached out to the company, the company wants you to fill out a 40 page application which they can mail to you. And you can mail back the best their lifetime. And in the middle of the pandemic imagine, you know, the services were even slower. I had a printer, and I was able to print it, fill it out digitally and send it back to them digitally, digitally, but they needed to be or they needs to be a mechanism for emergency. But because we're on the CD path program consumer directed program, we can take responsibility and say, I'm hiring this person, while the paperwork is being done so that we don't end up in these settings. So that's one of the things and I want to touch on something that Maria said and Nikki, where the services where for people with disabilities are always the first ones to be cut. Especially when it comes to home care services. So last year right before the pandemic in New York, there was a convening of Medicaid redesign team to cut 2 billion on the Medicare budget and it came out of home care, they restructured the eligibility criteria. So now people who would have been eligible for home care will no longer be eligible for home care under this new criteria so that would lead to more individuals leading into nursing homes. So it just like seems like we take two steps forward and three steps back as individuals with disabilities. And I could continue going in New York, the vaccination rollout. And there was a lot of ableism, there's a lot of caring about the economy and not individuals with pre-existing conditions like myself and people on this panel, you know, we have people coming in and out of our homes. And we may be able to isolate but we can't have those people isolating and they need to come into our homes to help us to keep us in our homes. So there's a lot, it's a lot. So, and again, I could continue. We'll circle back in a moment. Thank you for that. And we're very sorry for your loss. So, we saw, we just saw Texas, Texas experience a major power and water crisis. Christina, your organizations develop the Disability Disaster Access and Resources Program. Can you share how other states can replicate and implement this in their communities? Hi, thank you. I'm Christina Mills from the California Foundation for Independent Living Centers. I'm wearing a black shirt and I have a long brown hair. Pleasure to be with you guys today and very honored to also have our member Larry Wenger here. I'm from the California Foundation for Independent Living Centers. CFILC is not a Center for Independent Living. We're the association that works to represent and build the capacity of our centers for independent living in California that choose to be members on an annual basis. In 2020, we were very fortunate to launch a statewide program and we believe it's the first of its kind, Disability Disaster Access and Resources. And while I had a vision in 2019 of what this program would look like, of course, like everything else in the pandemic, it drastically changed from what I had put in a scope of work to a funder to what the reality was when the pandemic hit our state. With that said, our program is really focused on building individual and community resiliency and integration. And that has to do with all disasters and all emergencies. CFILC has been engaged in disaster work for over a decade and oftentimes partners with other national and state organizations, but really creating this program has really made a difference for so many thousands of people in California, specifically who have been impacted by what we call public safety power shutoffs in our state, where the utility companies are proactively turning off the power due to weather related issues that cause wildfires. So I know many people have been hearing about wildfires in California for quite some time. They have been providing over the last year portable batteries for folks to be able to keep their durable medical equipment and assistive technology going during the power outages, but also for those that a battery does not provide the level of support needed, offering them a hotel stay in order for them to maintain their safety, and of course decrease trips to the ER and unneeded hospitalization. But what we didn't intend was the impact that we would end up having in the COVID world. So, one of the things that our, our office also does that is really important and has been elevated and polarized during the pandemic is, we have been providing for the last seven years, internet access for folks who are low income in California. And again, it's, it's, it's not across the country. But I do think it's something that can be replicated. And while it's not perfect, it's definitely offered internet access to community members that otherwise wouldn't have been able to get online. And I think for all of us here, we, we have an understanding of how important and literally what the human divide has become as a result of having or not having internet access. And I never thought I would be talking about internet and disasters in the same presentation, but honestly, internet is everything in every conversation, more than ever because of the pandemic. So we have three main focuses when it comes to internet access and the digital divide in our state. And we've been advocating for three main priorities that I think are just again being highlighted because of COVID. And that just started as a result of COVID but things that that we've been pushing for that we're hopeful will begin to change as a result of maybe folks seeing the realities of what the internet can and leaves you out of when you don't have it. So one, the internet must become a part of the utility system. And we very much believe that while we depend, the government comes in when we, the government is supposed to come in when citizens and community members need help. And they often do that during any type of other disaster. I think because this is an infrastructural disaster, without having internet we need to talk about it as it is a human disaster when people do not have internet access. So number two, affordability, we need to make sure that low cost internet is possible. And for those around the country who are familiar with the Lifeline programs, one of the ways that we can really make the internet truly low cost is making it an option through the Lifeline program that is national through the, I believe the FCC. And then through our digital access project project we've supported thousands of individuals and securing access to the internet from their own homes, and that's given them the option to look for jobs. These are things before the pandemic but we were always pushing it for job search for education and for socialization. But during COVID we've also noticed that if you don't have internet, you lack the possibility of seeing your health care provider, because a lot of health care providers are not allowing in person visits. In a lot of states, you must have the internet in order to register to get a vaccine appointment. If you don't have internet, it's and you don't have cable television. It's not likely that you even know what where vaccines are available. Even when you do have the television you will hear it in general terms, but it's not to say that you're going to hear about specific locations, and how you might yourself individually qualifier go to get one. Those are the kinds of detailed and information that comes on the internet through searches. And that, you know, the need for increased socialization and telehealth access is at an all time high during COVID. And mental health across the board has been down because of the lack of socialization that people are having and so imagine living in your home and not being able to attend even events like this. So many of us in the workforce that do have internet access, maybe because of our jobs. We have a privilege that so many people do not have access to, and CFILC we partnered with the World Institute on disability a few years ago. And at that time, between 35 to 40% of individuals with disabilities over the age of 18 did not have access to internet in their own home. We also believe that building and maintaining infrastructure for internet access is essential. And that has obviously amplified that in all ways to not even a state like California has internet in all geographic locations, and the low income programs that we do have available through commercial plans are not offered across the state. You may be in Los Angeles and qualify for one type of low cost internet, but you may not have a lot of choices and if you lived in, let's say a rural part of the state you may have no choices at all. Or you do have a choice in the rural community, but the infrastructure isn't built out enough to allow additional subscribers to come on to the internet in that area. However, because of the CARES Act funding that Larry had alluded to and the amount of money that centers for independent living received in California, some of our independent living centers and our aging and disability resource centers have allowed and provided internet access through the funding that they receive. Some centers have purchased internet subscriptions for consumers. And what that means is they've actually paid for the bill in advance for up to one year. And that alone hasn't taken care of the issue because that's just one form of access that our community needs. And it's also about digital literacy and three, a device. So there's three factors when it comes to being able to decrease social isolation and increase all of the great benefits and services of the internet but you must have not only internet access and the capacity in your geographic area, you gotta know how to use it, and you need to know, you need to have access to a device. So in that same vein, because we've been doing affordable internet access programming in California for quite some time, we also have partnerships with refurbished computer companies. And then as a result of that we were able to provide the independent living centers. A number of hundreds of Chromebooks I actually think it's in the thousands now for individuals that otherwise would not have been able to purchase their own or get access to a device if they did have the internet. So we've provided Chromebooks and internet access to thousands of individuals during COVID. I think that that's been one of the most popular and greatest benefits of service that centers for independent living have been able to offer, especially for those of us who have underlying health conditions and are vulnerable to the pandemic. We are also incredibly fortunate to be the AT Act program in our state, which is very rare. California is the only state that AT and independent living are housed together. So as a result of that assistive technology is another priority area for us that we're always looking to do more in. And again, that was sort of the reason why we were able to leverage one program to another in order to get consumers really what they needed during COVID. And, and I think this is, you know, goes without saying but not having internet in the world today is really similar and I was trying to think of something that everybody like needs for the most part. It's like not having a pair of shoes, you can get by here and there. But if it's too cold or too hot, you're never going to know what you could have you could have had or learn because you couldn't get there. So for those of us who use wheelchairs like myself, flat tire, you know, we can get by on a flat tire maybe in our house for a little while, but if we can't get out, we're very limited. So, you know, right now the need is online access for vaccine services, healthcare, employment, entrepreneurship, socialization. And one of the big things for us is because we do so much disaster work. There's going to be an up and coming reality of internet providing alerts for natural disasters and even non natural disasters like the public safety power outages I was speaking of. The internet is your key to what's happening in the world and what you need to be prepared for. So now is the time for broadband to become a utility and for access to be continuous in order to not leave marginalized communities out. And, you know, to Jose's point like people with disabilities are constantly a part of the poverty cycle. We will never get out of the cycle of poverty and depending on the government. If we can't figure out ways to create and a robust home and community based service system and long term services and supports that allow us to gain and invest in our futures without going into the constant cycle. Thank you for your time and obviously this is a very much an intersectional issue as well, and very happy to be a part of today's conversation. Thank you. Thank you so much Christina that was such a robust, you know, amount of information you get so much kudos in the chat and thank you for being part of this project. We have 15 minutes left exactly so we're right on time and I'm going to go to some questions. And please drop in the chat links to the respective organizations and link to the AAPD publication page on medium to further read about the stories that came out of this project so I'm going to start with this question from Ivy. It says, if the US Department of Justice requires Virginia to honor the US Supreme Court's on said decision that states Virginia must provide community based services. Why are group home attendance paid more than attendance who assist individuals in their community at home and this is such a great question. We definitely talked about direct support professionals at home need an increase in pay. I will kick it over to Maria first and then we'll move to Jose me. I think, like anyone who's on this Maria. I think anyone who is on this call can answer this question very well, but the the pay rate goes back to the institutional bias that Larry and I discussed earlier in the webinar. And it is harder to to get states and insurers to reimburse at higher rates for self directed supports than it is to get to get states to reimburse for care and congregate congregate settings like group homes. And there's our again incentivize to set up these congregate settings so that they can again get a get a greater reimbursement rate. When we talk about shifting the institutional bias, it's, it's not solely about changing like the language of our policies, but really the way that people are paid. We need to make sure that if we increase rates for direct support professionals and attendant care workers that we also have the same increases that the direct benefit that disabled people are receiving is also increased so that with increased wages we do not see a decrease in in hours that an individual can receive Jose or Larry or Christina. Do you want to add more to this. I mean, I think that, you know, the direct care personnel services need to be uplifted. You know right now they are the bottom of the barrel they're not considered that weren't considered essential workers at the beginning of the pandemic, and they're usually a immigrant on educated people so you know, if the government doesn't think that people with disabilities are valued they're not going to value that people will take care of them. So, I think that that's one of the underlying causes we need to uplift the direct care services and make sure that they're paid at a rate that's above the minimum wage one so that we can get a greater pool of individuals, because you could imagine that it would have been easier for me to find someone during the pandemic with everyone out of work, not the case. You know, right now, people would probably be preferred beyond unemployment and get that extra $300 and stimulus, then work for minimum wage taking care of someone in their home. It's not a shame. It's not good, you know, right now with New York covering up the nursing home deaths, you know, people will end up in nursing homes and have a real possibility of dying. Larry, do you want to respond. Yeah, sure. I just wanted to highlight my agreement with something Jose said we literally just last week had a situation where a gentleman contacted us and said I can't find care. In Orange County, California where I'm at the wage for an in home care provider personal assistance services provider is $14 an hour. If you know anything about Southern California it's it's very expensive to live. It's extremely hard for us to find individuals who are willing to work for that wage. We need society, we need people we need Congress to value the contributions and important role of caregivers. There are folks who support your parents, your grandparents, your brothers and sisters perhaps who help sustain independence. And the need for caregivers if you know anything about, you know that that area of work in and the needs of society society is aging and the need for quality. For us is only going to increase and expand and we need to we must value that work and part of valuing that is paying a living wage. I just want to add one thing I'm sorry. At seven o'clock people in New York cheered for the sexual workers and my home care workers got up every day and risked their lives on public transportation to get to me and they should have been valued just as much as those who went into the hospitals and into the nursing hospital. This is Christine I just briefly want to add that the California auditor just did a report and I had posted on social media but in our state we have some counties that are paying less than minimum wage for care workers. That's disgusting. This is people that we depend on that deserve just as much as the next person in terms of respect and and pay and everything else but I last year or 2019 I was invited to Spain, and to speak about personal assistant services and it was so amazing to learn that our system compared to Spain is so outdated and underfunded compared to what other countries are doing. And the fact that Spain had an entire post secondary education degree set up to become a home care worker, and that the starting primary care worker straight out of college was at minimum $30,000 a year made me come home going wow something's got to change something needs to change here. And this is Maria, I'm going to sound like a broken record but I want to emphasize that the current COVID rescue package that was passed by the house. Last week I think includes a bump in Medicaid directly for home and community based services that would allow us to raise wages of care workers to $15 and above, pay them hazard pay and overtime. However, this is only this bump is only for a year, it's temporary, we need permanent solutions and I saw. This is just a question about the next, the Biden care plan, where he promised $450 billion over the next 10 years to support HCBS and the care workforce. And so we as a disability community, along with the labor community groups like SCI you and National Domestic Workers Alliance are organizing together to make sure to hold the president accountable to his promise and to ensure that this $450 billion is put towards greater community integration home and community based services and self direction of disabled people as well as lifting up this particular kind of work as absolutely and utterly essential. Thank you for that. I'm going to try to pull one more question we have about seven minutes left. So this comes from Dr. La Verrata. Why is it that people who are able to arm assist at an independent living center refuse to arm assist I guess at their programs. Even before COVID. So, Larry or Christine are you familiar with these terms. I'm not. I'm not either but I want to make sure I heard it correctly arm assist. Is that what you said. Yes. So maybe guiding somebody. Yeah they're in the chat yeah PCAs need more. Well, that's what she's saying PCAs need more. I'm sorry. I'm not familiar with that and again I'm not at a local center but I can. I'm sure with social isolation it's in social distancing I mean that's that's likely maybe a problem when folks need help with guiding with arm guiding. I could see how that might be a wellness and social distancing issue. Larry do you want to say anything else. Yeah, you know I now that you're, I'm kind of connecting arm assist. I also mean, cited guide perhaps for low vision people. And if I'm wrong and apologize but that is definitely an issue that, you know folks, I just want to broaden this just a little bit that folks with sensory disabilities be at deaf or visual disabilities, and certainly others I'm not trying to make any one disability more important or more affected than the other but it's very isolating to be in a situation where you don't have some of the senses to be able to necessarily recognize that you're too close to somebody or you know if you go to the grocery store you need to stand on, you know, squares or follow arrows and things like that around the store. And it's, you know, just my personal experience is some of the low vision, I mean it has been so isolating I have barely been out. Over the past year because of the fact that it's just so isolating and you, it's very hard to navigate or listen and communicate in a world that is right now so visually focused on watching out for other people, knowing that that person you're talking to is wearing a mask etc etc so I think that that's probably part of it that, if in fact that's what you're kind of trying to ask about it, it's just so hard right now to access the supports that you need in some cases because of the safety concerns. Yeah that's sorry about them miscommunication. So final point we have about four or five minutes left. Something that came out of our research that was very should be obvious but it was just very blaring is that in order for people with disabilities to live in the community successfully. They have to have a support system they have to have people in place who are willing to provide them with their needs would all be it family members friends, neighbors. Final thoughts on the desperate need for a solid support system at home. Jose I'll start with you. I guess it starts with organizations, you know holding support groups so that we can create those friendships with networks like I found with the friends that I have that have the same services that I was able to reach out to say I need help. So we met at support groups and you know we stayed friends. So yeah definitely, you know, family, I don't have much family to speak of you know I live in New York alone but I do lean on my friends and they're critical, I'm part of my support system. I would also, I want to add to this and just say though that everyone needs a support system supports that folks with disabilities need maybe different and unique to disability but during this time, you know everyone needs a support system. In terms of disabilities, you know our goal is to be independent and as self sufficient as possible. What we're advocating for here in the conversation today are changes to systems that will will help with specific issues connected to disability to sustain independence to to not end up in nursing facilities but but I do think it's important to stress that you know really everyone is in need of a support system during this time. And this is Maria just to reemphasize both Larry and Jose's points. Everyone needs a support system in order to survive in this world. But I think what Montisha is reflecting on and what what emerged show strongly from our research is how many systems and forces and structures make it so incredibly difficult for people with disabilities to sustain community connection and to sustain our supports, whether that's with friends or family members or a larger community. So many of our systems and institutions. Again, try very hard to segregate us because of the stigma attached to disability. Many, many folks, many disabled people don't have the benefit of Crip wisdom or Crip community and that can be life saving right. That is so much of what we do at APD at SIL United Spinal is not only make sure that disabled people have connections to the broader community and their families and friends but that are that disabled people are connected to one another. You know, we have had to be so resilient and I think one of the things that all of us on this webinar are working towards is building a world where resiliency is not required. It's a world where we can just connect, exist and thrive as we so choose. Thank you so much, Maria that was beautiful final words. Thank you all for joining today. Please be on the lookout for the stories coming out of APD and follow up with all of our panelists and their respective organizations. See you. Thank you. Thank you.