ASA Chicagoland: Caring for Older Adults in Assisted Living and Skilled Care Facilities: Policies, Programs, and What it Means to be “Safe”
2:39PM Dec 4, 2020
long term care
There's no doubt that this pandemic has had a profound impact on older adults in every place they call home. From assisted living to skilled nursing, to the home they've lived in for the last 35 years to perhaps a new Senior Living apartment, fear of getting and giving the virus has permeated every interaction between the older adults, their family and friends. And, as well as the staff who care for those individuals who are trying to support and serve them where they live, and provide them a life of dignity. Meaning, and days that are filled with grace in those early days before. Many of our members even had COVID cases. They were frantic in trying to prepare for the inevitable of getting a resident diagnosed positively with COVID.
they had no resources. We had literally sisters, and staff at Catholic at a Catholic facility, sewing and made masks, because they could not get any, they could not purchase any masks. We have retirement communities, several who were communicating with a vendor unknown to them. Unknown to anyone. In China, who promised that they could get them, pp. Here's the hitch, they had to wire. 50%. of the total order to some place in China. And they had to order mass quantities, a plane full. Essentially, we had members do that because they were so fearful. They were unable to get the resources needed. And they didn't know if that pipeline would ever open up. We had within, Illinois, church members who had relationships with local nursing homes, making protective surgical gowns, in the church basement. I myself remember going back and sending patterns of masks and face shields, that the hospital in Kirkland, Washington had were the first initial cases were they Hospital in that area had put out a pattern and a little tutorial for making this equipment. And so, you know, as I fought back in preparation for this. We've come a long way. But those were scary scary days, the population that is most vulnerable to this disease has not been made a priority. Not at all. Um, it's improved somewhat, but access to PP access to reliable and quality testing took a long time, and it's still there are still problems with that testing and surveillance, which I'll share briefly with you.
I recall back and Ruth I'm sure this is something that we've all put aside. But I remember one guidance that CMS provided was that the resident went in this is to preserve PP that early on when a staff member entered the room, wearing a mask to care for a resident, the resident was to hold a tissue or Kleenex over their nose and mouth. So that, while the staff member was in the room. And, or a towel. And that's how we were functioning. And thank goodness that we all have masks at this point. So, you know, I was looking back, thinking back to the day the governor's order came the stay at home order. Friday March 13, believe it or not. And we all went home with our laptops and our folders. And we all remember that day, very vividly. The next morning, I woke up and checked my email, and lo and behold was the CMS memo, including the CDC recommendations, saying that. No more visitors in long term care facilities in order to protect the residents. I have to say that that was truly a breaking point for me. Cuz coming from the field of aging services and working in long term care communities, or many years. I knew on a personal level, what that would mean to residents and their families, as well as the staff. And that was a very difficult day. We then needed to turn around, knowing that it was the weekend. Lots of family coming in, we had to inform our members of that, and hence life changed radically. So, our members being who they are, they took hold of absolutely every virtual device connection that they could employ to connect their resume residents with their family members from phones to iPads to a employed, everything they had to fill the gap. No, But, it provided some level of connection. So where are we now, our statistics I heard coming in. Nationally, 217,000 new cases, nationally, yesterday.
Let's talk about Illinois. In Illinois. There have been 10 point, 8, million tests conducted our total case positive cases of COVID 759,000 560-240-5882 cases in long term care. Total deaths. 12,008 30 47% of those in long term care the most vulnerable population. And then we have a statistic of probable deaths at 795 that are attributed to COVID, and that is that is statewide that is not specific to long term here. We have an Kelly participates in these calls we have weekly calls. Early on we they were twice weekly calls with the state agencies on policies, practices questions, etc. And they've been extremely helpful so that all of us could be on the same page. At the same time, hearing the same information. We had a glimmer of hope. I guess you would call it that. The Monday before Thanksgiving, Dr. Katherine Pienaar, who is with idph and is a frequent and constant contributor on our calls shared with us. The provider associations that right now. It's just the current total case numbers. Three to 4% are in long term care facilities. While that is still a lot. We were pleased that providers were having some success with the battle. And we're keeping the virus at bay. And the numbers as I have reviewed the state numbers from early on in the virus, specific to long term care communities, the number of cases, positive cases, as well as the number of deaths have gone way down, because we now have what we need to fight a virus. I think we can go to the next slide now Bonnie. So, we were, we have our law during those parts of the spring and summer. Um, and our members were able to open it open for outside visits. And thankfully the weather cooperated, and that that provided some relief to this very difficult to grasp restriction on visitation. And then in October, idph State of Illinois did provide us with updated guidance on reopening, and it is within this document that we now have the tiered mitigation approach. And as you all know, we are the entire state is in tiered mitigate tier three mitigation right now. So we are back to Florida to my slide here. See if I can read it. Um, we are back to no communal dining. No visitation. And no beauty and barber shop services. And those are hard to take no group activities. So we're back in that phase where staff are trying to find ways to connect residents with their family members, and with the holidays upon us. That will be even more difficult. But they work and have worked very hard to find ways to dispel that loneliness using the virtual programming
and entertainment, and use it, and distraction. But it is not what we would hope for are meant for those that nursing homes and assisted living. And we hope that with all of that, ahead of us with vaccinations we're hoping very much that we can get there quickly and without any further restrictions. Let's see. We're now at a point where we are getting information about vaccinations and hearing about that so we are continuing to advocate for our healthcare workers, and our residents do, in fact remain in that one, a priority category as recommended by CDC. So, we will need to monitor that and just make sure that in fact, those are the folks that are going to get those vaccines, at the first round. Oh, that's where we are right now. Oh, it's just a this is a page on our on our website. We have opened up our website. The COVID-19 resource page to non members and it's been open, I know leading h has done similar. Similarly with their website, because we have felt that information needs to be out there to whomever wants it. So we have tried to be very open with all the resources that are national and state associations have amassed over the last nine months. So I thank you, and look forward to hearing from the rest of you.
Thank you, Karen. Could you before we jump into the panel discussion, could you just briefly describe leading age and kind of who you represent and sort of what what percentage of overall nursing home residents in Illinois, your members cover. Thank you.
Okay, thanks funny, leaving ah Illinois is a trade association, and we represent all aging services across the continuum from skilled nursing care to. We have some adult day we also have a large number of assisted living communities, a large number of affordable housing HUD subsidized communities. Yeah, ccrcs, or life plan communities. And I'm sure I'm in Home Services home care or hospice, home health as well. So we really run the gamut of services that are available to seniors within, Illinois.
Thank you, Karen. All right. And as we transition it you're on mute. Thank you, Karen. All right. And as we transition to the panel moderated by Kelly Richards our state Long Term Care Ombudsman, I just want to do a friendly reminder that folks can submit questions into the chat I've seen a few come in, already so thank you for those. We do have kind of set questions to kick off our facilitated discussion but we do have some time built in to make sure to get to all of your questions as well, or to try to get to all of them we know there's a lot to explore today in the next hour and a half. So thank you for that framing and Kelly I'll hand it over to you.
Okay, good morning and thank you, Ronnie. And I will just reiterate indicated that I'm a moderator today. So, I'm also serving as a panelist so I'm going to be trying to work very hard to keep us on track with our discussion as Bonnie indicated we are allowing 15 minutes per question we have about five questions, and so each person will have three to four minutes to provide an answer to their question and I just wanted to thank Karen for setting the tone for us for this discussion and giving us an overview of the journey, thus far. So for our first question we are asking to tell us about your work, and what's keeping you up at night. So I'll jump in and for this particular one and then I'll move around through the rest of
panel members so as the state ombudsman I'm responsible for the long term care ombudsman program as well as I oversee the Home Care Ombudsman Program, and both programs are an advocacy program, and we work to resolve complaints for residents and participants, the resident and the participant is our client regardless of the source of complaint. We work to make sure that they know that they, they have rights and what those rights are for the long term care piece we go into facilities. Prior to COVID to do routine visits and to speak with residents let them know about the Ombudsman Program share information and do community outreach. So, as I think about what keeps me up at night. I wanted to share a example of a story that actually came across my desk last week. We were contacted by a mother of a young resident who has a brain injury, and the family has been very happy with the facility. Prior to the pandemic both parents would feed him provide personal care do passive range motion and help keep and help him perform active exercises, they would take him to all appointments and bring him home on weekends, the mother is a nurse who works full time and another unit of her son's facility. When the lockdown began, she was initially able to continue to assist her son, until about mid September, when they said that she could only see him for about 10 minutes per day, the resident has been quarantine eight times since Joan, and during those quarantine. He has had a diet downgrade to pureed diet. He's experienced loss of muscle tone. They put on antidepressants, then I'm able to gain weight has experienced severe contraction in its pants, and it has developed to decay. The parents work with a lawyer to push compassionate care visits, which were initially granted in mid October. However, when idph released the revised guidance, the facility interpretive guidance to narrow the compassionate care visits and the mother was no longer able to see her son. There are more details which include difficult receiving outpatient therapy, being denied participation in group activities. And the bottom line for this mother, she believes that isolation was slowly kill is killing her son. So for me it's the state ombudsman. This isolation that residents are feeling and experiencing is one of the things, among many that's really keeping me up, as well as my fellow ombudsman up at night. And this is just an example of many stories that we've heard over this period of time so I just wanted to share that and I will pass it on to be able to give us some perspective on his work and what's keeping him up at night.
Kelly Thank you so much, and I appreciate you offering that example of your work as the state Long Term Care Ombudsman. And I want to thank Diane and Bonnie and Michael for bringing me into this and I feel very flattered to be with such a wonderful set of CO panelists, my principal role these days is to serve as the policy advisor to several national organizations, including the National Adult Protective Services Association, the National Association of State legal hotlines and the American Association of service coordinators who work in affordable housing. I might mention my work with ask the service coordinators presents me with a great opportunity to work closely on housing related matters with the staff of leading h national who are extraordinary I just have to say that I might also mention and it's not directly relevant to this conversation but I'm the chair of the International Association for addiction. In this eating, or we call it i squared, which I co founded with Dave Baldrige former executive director of the National Indian Council on Aging and our work there is focused entirely on America's American Indian and Alaska Native population. Now, what's keeping me up at night well I'm going to put it into two buckets one is personal. My personal one is you know that my immediate family remains safe, especially my wife who goes to work each day at our hospital system, where she is CEO of Maryland's largest hospice and provider of serious illness care, and my 20 year old son who has a patient transporter at her hospital. He especially is on the front lines, every day, I'll certainly know that he'll remember the first body of a COVID victim, that he took to the morgue. Professionally, what keeps me awake at night is getting Congress to pass another covid recovery package that provides relief, including PP for state and local Adult Protective Services. Long Term Care Ombudsman nursing homes and others. And while we should not be surprised about what we've seen with nursing homes in this pandemic. I spent time wondering what will change with respect to nursing homes and more broadly, the way we consider older adults and public policy. Once we are on the other side of this pandemic. Thank you. Thanks, Bill.
Our next move wants to Ruth Do you want to give us a little bit of information about your what's keeping you up at night.
Sure, um, thanks to what Karen told you about. Leading Edge Illinois, I probably don't need to give you too much of it more of a description of leading edge national, basically we are the the national association that represents the continuum. We have about 5500 members and again across the continuum. And the one thing I would add to what Karen said is that he will move across the continuum to so we don't talk about, oh that's a nursing home person or, that's a person who uses this bill was talking about service coordination in housing, people, people use different throughout the trajectory of a long term care journey, people use all or many of the different services and that's kind of really important to keep in mind, which is why the continuance important, we're not talking about different, you know, silos. In, on the same campus we're talking about an integrated service function. You know, it's funny what keeps me up during the day is, and it keeps me going during the day. Like, more than coffee even keeps me going during the day is what Bill was talking about the policy challenges. When COVID first hit that trifecta it you know there's a testing peopIe, and staff testing, pp and stuff like a mantra that that is actually what keeps me up during the day figuring out how to, how to solve those problems yeah we need a release though. Yeah, we need testing to make more sense. All of those things and now let's add vaccine so that I don't know what the word is for for things when it's a trifecta plus one, but but it's it's it's now that that quad something quite four things. The thing that keeps me up at night, though I have to tell you is that I get my heart broken. Every just about every single day. And I think that my problems are nothing that the members that we support, who are are doing this work every day, and watching, watching what's happening, they're just, they're worn out, they're they're worn out, dealing with all these policy challenges, and what I'm hearing now is just a weariness. We did a I'll give you an example and then start but we had a, we did a congressional briefing yesterday to say, Hi we're still here we need a relief bill now Not, not in the hundred 17th Congress in January we need it now. And in January. I think we were prepping for it and we had to do the prep in two chunks because of people's schedules so talking to one of the speakers at home health provider in Atlanta and she said, you could just hear in her voice a really strong person usually but Dorothy just sound tired, she said, Yeah, I just, I'm having a problem with staffing right now and she told the story of one staff person who is also a caregiver. She says she's a home health professional who goes and visits people in their homes, usually about six people in one day. Right on COVID right, going from home to home to home, and. She is also the caregiver for her the informal caregiver for her dad, and she took Thanksgiving off and then when did her job on Friday visited a bunch of people, including a family where her home health patient was getting her care, and her that home health patients informal caregiver has brain cancer. And then on Sunday, she started feeling sick and on Monday, she tested positive for covid, having not she didn't have a big blowout Thanksgiving, she, she caught it from a dad. That's what keeps me up at night she said people. You know I can't get staff, they're afraid they're, and these staff are tired. She said one of my staff just had a big car wreck. Okay then we move on an hour later and have the prep call with the other speakers. And this is the speaker who runs a nursing home in Wisconsin and she said, Yeah, I'm just tired you know staff are just so worn out there, they're just worn to a thread she said and one of my staff people just had a big car wreck.
Two of us from leaving a job or sitting on this call burst into tears, you know, and I don't bring crying. I know, it's like a thing that some people do. I don't bring chronic to work with me it's just not how I'm emotionally made up but hearing that same thing twice in an hour that you that's not a coincidence you know that's because people, they're just not, they don't have anything more to bring yet they keep bringing they keep delivering that's, that's why I can't sleep at night, the policy stuff I can worry about. And in a way, I can say, okay, that'll be here for me tomorrow. So, I will stop there.
Thank you so much Ruth I appreciate you giving your perspective. The next person, I will, too, is that the camera can you tell us about a little bit about your work and what's keeping you up.
morning everyone, I'm Tamara can eska I'm a health economist and health services researcher on the faculty at University of Chicago. I have been studying long term care for about 25 years now. Usually My research focuses on a national policy level. I use large data bases and do a lot of statistics to analyze policy questions, and my main areas of focus are Nursing Home Quality and incentives for quality for example I've done a lot of work on the nursing home compare star rating system. I also sit on the panel that advises CMS on that system. I also do a lot of research on Medicare and Medicaid policy, and how those policies affect quality of care in long term care, including the nursing home, and also look at Medicaid community based care policies and outcomes of that care. Of course, since the pandemic hit. I have been focusing on COVID related research, specifically looking at the predictors of which nursing homes are most at risk of cases and deaths, and what things can be done to to mitigate those risks. I was one of the first people with our team here at University of Chicago to look at some of those questions which resulted in me testifying to the Senate Special Committee on aging in back in May. And since then, we've been refining our analyses and continuing to look at the nuances of staffing and quality and communities spread and all of the predictors of outcomes for nursing home residents and staff under this pandemic. What keeps me up at night, is, is really how little has changed since I gave that testimony in May, and I don't want to downplay the progress that has been made. Certainly, the PP and testing situation is not as bad as it was in spring, and certainly we've learned a lot
about how to control
infections and mitigate outbreaks in long term care facilities. Once the virus enters
the facility. And, you know, I think that real progress is showing somewhat in the in the numbers that were presented presented at the beginning. But, in many ways, the situation is still just as dire as it was back in spring. If we look for example at PP, we see that there are still many areas many facilities across the nation that report having shortages of peepee, and as we see so many states surge at the same time, I think that could actually get worse. Similarly protesting I hear anecdotal reports, for example of assisted living facilities and some nursing facilities around the country that, you know, despite some efforts to ramp up testing and get them, you know, rapid response machines. There are still nursing facilities that are waiting days for results, or they don't feel like they have access to rapid testing, and perhaps the most important issue is staffing, and I feel like that problem is actually getting worse. Because nursing homes report that they just can't get enough staff, even if they want to hire them right now, and all of the things we've been talking about communicating with families, you know, implementing best practices. In addition to daily care needs implementing best practices with response. With respect to the pandemic. Those things all take staff. And so I think, you know, we have far from solved that problem. And a corollary to that what really keeps me up at night is that we somehow I think there's this sort of widespread belief still that, that this is all up to nursing homes that you know if nursing home providers were only do the right thing and get their infection control procedures to be better. That, that we could eliminate that risk, and the research just chose us I'll talk more about this later. In this panel. The research shows us that that's not true that community spread is the biggest predictor of which nursing homes have cases and deaths. And there are things nursing homes can do certainly to mitigate that risk, but it's not. It's really just going to make a dent, and the risk is going to remain so you know I conclude from that that, you know, we're all in this together. It's not just about nursing home and to think that we can sort of you know force nursing homes to deal with this problem and solve it by themselves without, as a community, as a nation, trying to control communities spread. I think is a really dangerous idea.
I'll stop there.
Thank you. Thank you. appreciate your perspective. Hi Karen I know you have to bounce off in a bit. Do you want to give us a response on what's keeping you up at night.
Kelly I think she actually just dropped off.
Yeah, all right thank you move on to the next question. Thank you, Bonnie for that. And I appreciate all the responses that we've received thus far. For next question, please share a brief update on the latest relevant policies and recommendations influencing your perspective. And we wanted to have Karen start us off with that so I'll just jump in and then I'll move around through our panel. So, for the ombudsman program back in March, based on the guidance from federal CMS, I issued guidance to all ombudsman to all indoor visits. And as with many other professions ombudsman has had to pivot and shift, and be creative in terms of how we do our work as everyone should know we are not a virtual program. We are a face to face program so we had to modify how we conduct our work, and we had to move to the virtual platforms and reaching out to people via phone and trying to participate in the fit of family councils and resident councils, virtually you using email more and all of these different platforms to conduct meetings and stay connected with residents and our friends and their families. One creative way that we've also done it one of our programs as purchase, with the Kazakh money that telepresence robot to try to stay connected with resonance. However, there are many residents who do not have telephones in their rooms and several facilities in the rural parts of the state that have limited to no internet access, and then over the summer, as guidance was revised the Ombudsman began to resume in person visits. We started with window visits, then we transition into the outdoor business. And now we finally moved to resuming indoor face to face visits. It's been a challenge, to say the least for ombudsman we're concerned about the health and safety of residents, but added to that many ombudsman have risk factors themselves and live with someone else who has the risk factor so that's been a challenge for us trying to navigate through that and make sure that we're staying connected with residents. We've seen a wide range of facility responses in terms of on busman visitation some facilities have openly welcome on bondsman even trying to get ombudsman to do indoor visits before we were even authorized to enter, and other facilities have made visits are quite difficult even trying to stop window visits. So, um, however, was a bondsman explained that we are state authorized personnel, and we point the facility to the letter that my office has generated and also the guidance and federal CMS guide is most facilities have not conceived to prevent visits and they have capitulated at the state office level, I've been working I think they Karen had mentioned this earlier that I participate in weekly meetings with the associations and idph. I've been working with idph. I work with them on the route entry guidance that came out in summer, and then like I said I've been meeting weekly with idpa associations and hfsc about weekly call that initially started by twice a week and then it moved to weekly. It's been encouraging to see surveyors bagging facilities. Another challenge early on was getting responses to serious complaints when a bondsman weren't able to go into facilities and says ombudsman are regulators, it's imperative to have idpa and HFS completing the complete new survey so I'll stop there because I know I can't monopolize all the time. And I'll move on to some other of our panelists. Do you want to give us some insight regarding the essential caregiver legislation. With respect to this question.
I will Kelly, but I'd like to make some other comments before I get to that if that's okay. I'm going to date myself here a little bit. Sir, I'm going to I'm going to date myself and admit that in 1966. I'm sure many people in our audience would not even alive, easily in 1998 1966 while I was in high school, I worked in a nursing home. It was the year after Medicaid rolled out spawning the nursing home industry, as we know it today. I will just say it was a traumatic experience for me. And I often found it very ironic that years later I would become a state Long Term Care Ombudsman remarkable job that I will treasure full always Kelly as I know you will. And that then I would end up working in Congress, particularly on nursing home legislation, including the, what we refer to as the over 87 landmark. Nursing Home Reform Law.
And I sometimes wonder I'm thinking about tomorrow's comments about what has changed since May. There's a lot that I wonder about what has really changed in the last 50 plus years with respect to nursing homes, this past Tuesday, December 1, the nation's leading consumer advocacy organizations with respect to nursing home residents, including consumer voice, the National Association of State Long Term Care Ombudsman programs and others jointly sent a letter to the US Senate leadership, urging them to quote enact provisions to protect residents and workers and arrest the corona virus pandemic and quote in long term care facilities as part of the hope for next COVID recovery package. It's an excellent document and I recommend it to all of you to read it speaks to a number of issues like inadequate staffing in facilities conducting surveys investigating complaints and indirectly residents rights by calling for family visitations with residents with the proper safeguards. These are not new issues they've been with us for decades, frankly, since the industry began inadequate staffing whether nurses or CNAs or social workers, has plagued this industry since its beginning ombudsman and other advocates have continuously struggled to have the regulatory bodies, whether CMS sorts for run or HCA or state agencies do a better job of oversight of facilities in the best of times, much less a time like this, not to mention doing a better job of responding to complaints from residents and others on their behalf. We've known that the nursing home workforce, especially the CNAs are grossly underpaid, and overworked overworked, it's no surprise many have to work at other jobs, and therefore have been a major route for bringing COVID into facilities, dealing with infectious diseases is not a new issue for nursing homes in May of this year, Gao issued a report noting that prior to the pandemic 82% of nursing homes were cited for infection control deficiencies in fact the industry, at least the proprietary sector have fought requirements strengthening infection control. Not, not to get too far out there but much more broadly, however, the frail elderly and those with disabilities those living in long term care facilities have long been marginalized and rendered largely invisible. And at the risk of offending some of this audience, many of the aging fields. Fossil smart well meaning people seem to overlook the fact that there are still nursing homes and nursing home residents. I am struck by how few agent organizations truly weigh in on policy issues affecting nursing homes and assisted living facilities and those who live in them. Thank God for those that do, and that does include median age, I've got to give them their properties on this. And at the broadest level we are in a society, perhaps a world that is rife with ages, the topic too big for this discussion. So in other words, his cauldron has been brewing for a very long time, but the silver lining in this may well be the attention to what has happened in our long term care facilities, from the media from advocates ageing professionals national organizations and policymakers. We just need to tap this new increased attention to convert to sound policy and to sustain it beyond this crisis. And that brings me to the, the essential caregiver program or essential Support Program person, as, as, consumer voice calls it, it is good that some 14 states have now adopted some form of an essential caregiver program or policy, and it seems that Minnesota has really been leading the act, but it means also that 36 states have not done so. CMS has improved its guidance on visitation of residents, but it's guidance, only some states have responded favorably to that others have not. The good news is that nursing home residents and staff sound like they are now a priority for the vaccine when it becomes available. That's really good. And that's quite a reversal from where nursing home residents nursing home staff and nursing homes themselves sort of stand in the public policy I, they're not really thought very highly of, and we don't treat them in a way that would have helped to ensure this pandemic wasn't as awful as it has been in long term care facilities, I'll stop there. I think we'll come back to maybe talking about some of the policy issues that are pending. There are a number of packages pending in Congress, that would provide relief to nursing homes that would benefit residents would protect their rights, but they're pending. They've been languishing in Congress for months and months and months. And I know that leading h at their briefing yesterday to try to get something to happen. We're doing the same thing, but we could well end up with very few of those provisions ending up in law by the end of this Congress, and then we start over again in the hundred and 17th Congress. So the last point I'm going to make here. And last night when I was thinking really about precisely what I wanted to say, I made pretty detailed notes. When I got done. I had an aha moment I went, Oh my god, I get mentioned Donald Trump. Once I don't think I've done that in a presentation in four years I was very proud of that. And then lo and behold, I read an email last night about a notice of proposed rulemaking that the Trump administration has just put out the god under the radar screen,
the comment period for the first part of it is today. The fourth of December, and it's a rule, it's a proposed rule that all h h s regulations will end after a 10 year period. There's a mechanism for that to be sustained. but automatically they will end. It's. And when you think about all HHS regulations you're thinking about all the regulations for example that govern nursing homes under Medicare and Medicaid. And that's what we're talking about. And so what we're seeing is an incredible example of this President's scorched earth policy of what he's going to leave behind the the next administration could spend four years just trying to wade through what that actually means so we should be alarmed about that and comments are due today. Today, Friday, December 4, except for the provisions affecting Medicare as I understand it, there's another month for those comments early January.
Thank you, Bill. I really appreciate you giving those points and sharing that information with us, and I just wanted to piggyback off of something that bill had indicated regarding essential caregivers idph issued their essential caregiver guidance this Wednesday, and I put it in a chat for anyone that's interested in looking at the guidance I'm trying to keep track of the time, so I'm going to move on. Roof Do you want to speak a little bit about this question, and I can restate it for you if you need me to.
So about that kind of the top policy issues we're working on now.
Yes, absolutely. Latest relevant policies and recommendations. Yep, but
I want to I want to come in on two things like Bill said so I hope it's okay if this is conversational, is that okay.
I agree with so much of what you said Bill and I wanted to say that that early job in a nursing home, no coincidence there right i mean you saw I saw stuff at the same in the same time period. In a volunteer job in an ICF Mr friend of mine were like in eighth grade, my friend said hey, you want to go work I'm supporting a Cub Scout troop. In this brand new institution that just opened up a few towns over. It's actually subsequently been closed but the cub scouts were like, in their 20s. It was the most infantilizing awful. It was like was like stepping into One Flew Over the Cuckoo's Nest and it to me. I went when I 1213. That was a career maker for me and I, you know, I'm still in touch with that girl that went to that place then because and it ended is a lot of what drives me.
I'm sorry when you said the part about canceling all rules in 10 years I mean I think I was gonna say kind of the two big policy areas on my plate right now and on leading ages play have to do with kind of F let's let's call it everything COVID, and the transition. And when I say the transition I also mean in Congress because, and this is a weird congressional transition because we won't know the new Congress 117th Congress starts on January 3 and we won't know till January 5, who's in charge of all the committees and and who's the majority it'll be a slim majority but but we need to know that you know, kind of policy going forward. But I also do you mean of course the presidential transition. So, in the, in the COVID space. That probably right now the hottest fire that's burning is about vaccines. And it's the one that that is absolutely the eating up most of everybody's brain right now and with good reason. Right, so, and there been some weird. This goes back I guess to your question about the administration to Bill there's been some strange changes so for nursing homes, assisted living. Long term care which includes what they call ccrcs life plan communities so that's the Independent Living piece of it, and yay leading age we convinced them to include 202 housing places were relatively vulnerable older people live in a congregate space. The pharmacy partnership with CVS and Walgreens that was created by HHS by CDC, originally was going to be a federal distribution to those places that signed up, and 99% of nursing homes for example sign up for to cover the residence, and something happened last week with. And I'm not even sure what it was but a policy change happened that put the decision about activating the pharmacy partnership into the, into the under the rubric of under the control of governors, it would appear that most governors are. I'll call it doing the right thing and are following the Advisory Committee on Immunization Practices a sip. And I'm choosing to go first to healthcare workers, including long term care workers. And right after that, to go to, to, to residents of long term care places and up to o tos. A lot of the conversation now and and a little bit of the issue that we're working on a lot is folks in long term care we are so used to being, you know, like, I don't mean to be to be careless about the precise other way I'm saying that we're like a hangnail on health care, you know, and this is that I've been working in health care for, I don't know, whatever 35 years. And you, you go to these health care conversations and these big ones at the White House and in HHS and. And you say well how you know I'm from long term care and they go at nursing homes. No, it's bigger than nursing homes, and it's important as part of our health care system. Part of our social service system in this country, but it's always been sort of a tagline, and now because of COVID, it's not, which is a, which is a really good thing.
But we are used to being the, you know, sort of the step sister and, and being treated that way. And so I think what I'm what I've seen, among a lot of people is. Oh, now they're not going to go to long term care now the states are going to control it and what they're going to go to teachers first they're going to you know they're going to go to firefighters first. I think that when we look back in six months, and we still have people under 65 are still trying to get access to vaccines. And we say, well, so they got to, you know, the staff of hospitals and nursing homes on making this up, you know, December 10 right after the EAA having on the vaccine. And then on December 12 or 15th, they got to the residence of of nursing homes and assisted living. That's not gonna, we're gonna say why were we so obsessed with that we needed to be first, we needed to get through that gate First, the real issue. The real issue that we're still going to be struggling with then and that we are struggling with now is education. How do we get the staff in all of these places to pull up their sleeve and get the shot in their arm. And that is going to be the biggest problem that that we're going to face over the next few months. The other, the other thing I guess worth highlighting here is testing I think we need a national testing program, and that issue. Yes, we have point of care antigen testing machines that have been distributed to all nursing homes but nursing homes have to come up with the money to buy the replacement test kits. So for example, provider in Connecticut called the other day and said, for 30 tests. And I'm doing, what do they say 150 tests twice a week for 30 Test Kit refills for that machine is $850. So you talked to providers and they're spending millions of dollars, which comes from. We don't know where you know there's some provider relief but anyway so a national federal fully funded Federally Administered testing program. Which brings me to the transition. I think what we will see in the transition, the kind of change we saw in the pharmacy partnership where it was shifted to the States, I think we will see less shifting. And I'm not saying that the all of the power and control will be removed from states but I think we'll see probably an attempt to be a little more collaborative between the federal and state governments, as opposed to, pushing everything to the States. And the problem with pushing everything to the states is you have a state like Kentucky that took its cares money and decided to pay for any place where older people live together, twice a week testing.
Oh my God, that's
You have other states. You have New Jersey that said well we're gonna do testing every other day and we'll provide binax cards for the next two weeks to do that. And then, you know, and it's, we need a national test we're one country we're all in this together. So I think as we see the transition, which is the other thing we're working on now. We'll hopefully see some change in that.
Thank you. Appreciate your perspective. Um, let's move on. We're doing pretty good on time but we need to move on. I'm Dr. Tamara, I'm hoping to mess up your name I apologize, can you give us your verse. Yep. Can you give us your perspective. Thank you.
Yes, I yeah I couldn't agree more with everything that Bill said in Andrew said just now. I want to talk a little bit more about our research about the predictors of cases and deaths in nursing homes and I am talking about nursing homes here, because we have data on nursing homes right and so a lot of this is true of assisted living. There's been a few studies out there on assisted living and other settings, but the best data we have as usual is on nursing homes and so a lot of our research focuses on nursing homes using the data collected by the CDC and CMS that facilities are required to report from every state. So, over and over again, you know, starting back in spring when the data first became available, even before that we were just compiling state data and doing the same analysis but throughout this time period. We found a couple of key things.
One is that
quality of the facilities or baseline quality of the facility doesn't seem to have any predictive power in which nursing homes are going to have cases and deaths. And then, this was a surprise to many people. But, but the data are very consistent in that so whether you're a five star facility or, you know, a two star facility. Doesn't seem to make any
What we did find is, as I mentioned earlier, by far the biggest predictors strongest predictor and most consistent predictors of patients and deaths in nursing homes, is, is just community spread so where you're located. And as we've seen the virus surge throughout the country. At this point, because the surge has hit almost every area. The data shows that 98% of the facilities in the country have had at least one case. Right. And so I think that is a pretty astounding number that backs up the fact that, you know, this is not all about quality and preparedness like the entire industry was, you know, caught off guard by this incredible event, just like, you know, other healthcare sectors where as well. What we did find is certainly larger facilities are more at risk and that's very consistent and, of course, that makes perfect sense when you have a larger facility you have more traffic in and out. And we consistently find that, because it's correlated with being one of those larger facilities and because it's correlated with being in areas of high community spread. We found that race is a really strong correlate of which nursing homes have cases and deaths and these numbers about race are really astounding. So if you are in a nursing home, that is, in the top quintile of non white residents. You are, You have three times as many deaths, as in the lowest quintile. So it's a very, very strong and important difference and so you know we're probably not going to spend a lot of time talking about equity during this panel, but to me that's sort of always an element of this, both for staff and residents that as we see these devastating effects, it's not equally distributed devastating
We also found that prior infection control citations were not predictive so quality in general, it was not predictive. So it was more about size and location. This has been pretty consistent. We did find in a careful analysis where we were looking at the nuances of staffing so not just like the staffing star rating which was not very helpful and did some funky things in the analysis. What we found is that having more staff can help. Having, especially more CNAs can help. It doesn't help prevent the virus from getting into a facility, which again makes sense, you know, large, you know if you have more staff you have more people going in and out. In fact, it can actually do the opposite, and make you more likely to have the virus in your facility but having more staff can mitigate the effects, in the sense of ending up with fewer cases and fewer deaths. And so that also makes a lot of sense you know to implement the best practices right now to, you know, get all the testing done to cohort residents and separate people to have dedicated staff, caring for covid positive residents who don't have to go back and forth between, you know, COVID positive and negative resin or back and forth among different facilities. You need to have enough staff. And so that can help on the margin. Um, so there certainly are things facilities could do infection control is certainly important, having enough
staff is certainly
important. But, you know, as we've seen that, it's an increasing challenge for facilities to actually get enough staff. So, there's there's more than I will skip in the nuances of the research but those were a basic conclusion so it keeps coming back to community spread that this whole idea of that has been floating around about, you know, maybe we should just sort of let the virus rage among younger people who are not as vulnerable and protect nursing home residents, you know, that's just, you know, we've seen, we just can't do that. It's impossible
right because we're all
interconnected. And we can't protect nursing home residents without controlling communities.
What does it say about the policies, I think, um, you know, to me a lot of this comes back to sort of failure of federal policy from the outset to secure the supply chain from TPP and testing. You know, echoing some of the things that Ruth was saying, you know, we need to make sure that facilities throughout the course of the rest of the pandemic have enough access to TV TV and testing. I think some of the statements that have come out of the federal government about, you know, we're going to send out these initial supplies of, you know, rapid response testing and point of care testing, and you know send out two weeks at PBE and then it's going to be up to the free market after that is, is, you know, really misguided right because we have nothing like a free market for the supplies for nursing homes
and, you know,
procuring those supplies and paying for them. I think is all a huge challenge still, and this is where there really needs to be a strong role for policy. At the same time, given what we found in terms of the predictors of cases and deaths. I think some of the more punitive policies that have come out of federal and state governments are not particularly helpful. I think at this point in time sort of finding facilities that are not doing well controlling an outbreak and rewarding facilities that are doing better. Given how little control we think nursing homes actually have, they have some control right but a lot of it is about what's going on around them and what supplies they can get hold of. And so I think some of those cunit more punitive policies could actually backfire. And that, you know, the throat
facilities already struggling to
have enough resources. Again, the ones that are struggling the most tend to be in black and brown neighborhoods with high, high Medicaid census,
if we're going to
find those facilities, rather than giving them the resources to fight this pandemic. I think that is not helpful. Um, So, so those are I think that some of the main implications of our research for thinking about policy. I want to go back before I stop to something that Bill said about staffing and and re emphasize that. I think that, you know, when I think about, people who work in long term care facilities, you know, given that they're often working for minimum wage, with few benefits, often no health insurance. You know no sick leave. And, you know, doing a pretty challenging job, sometimes physically challenging and emotionally challenging. And, and then throw on top of that, you know, a pandemic where they're at risk of getting a potentially fatal disease and bringing that home to their families. I'm really amazed sometimes that they continue to show up. And, you know, I think that solving the staffing problems sort of rewarding those workers for the work that they're doing treating them on a par with hospital workers is in the short term, probably the most important thing we can do. And hopefully, you know in tandem with finding enough stuff. At the same time, and in the long run. I really think that, you know, hopefully, there, there is this silver lining in this crisis that it'll make people fundamentally rethink how we pay for and deliver long term care in this country, I mean it's at such a crisis that I hoping, hoping there will be this, this silver lining. I truly think that, you know, we can do what we can in the short run to solve this crisis, but we're never going to make more than incremental change in long term care. If we don't undertake fundamental structural payment reform
and figure out how to treat the workforce better. So I'll stop there.
Thank you so much for your perspective, in some of the points that you made I agree with you entirely about the staffing issue. We see that occurring today or I think is a date 11, that there are people on strike 11 facility is so that's something that we definitely need to look at and I also just want to point out and appreciate the fact that you brought up, equity, you know and I know we don't have the time to get into it now but it is something that we definitely need to look at so thank you for that I truly appreciate that. I'm gonna move on to our next question for our panel. Our next question number four. I'm jumping around, for the sake of time. What does it mean to be safe. And how do you balance concerns about social social isolation and loneliness, with containing the virus to avoid those were caring for contracting COVID, and then there's some ancillary points that we want to make but, and I'll bring that up out of the group, but I can start with you, Ruth Do you mind, starting this off on this question.
Sorry. The question was about the balance between. Go ahead. Yeah,
yeah, I'll restate it so what does it mean to be safe. And how do you balance concerns about social isolation and loneliness, with containing the virus to avoid those that would caring for COVID.
Okay so yeah this is one of the most painful painful discussions that we hear when, when we talk to people that run aging services organizations particularly nursing homes and assisted living well, every place had visitation innovations. And you know we've all been, I probably everybody on this call everybody in this room has been in conversations.
What the last
many years about social isolation about loneliness and what can we do and what are the policy levels to that and what are the operational levers for that. We've been struggling with this. This is not a new problem and then
it COVID, like, Wow.
I also have in the back of my head, And maybe this is just this is. I'm not trying to be provocative too much but I think that a problem for people in nursing homes for a long time has been the family members. They don't have a network they don't have informal people they don't. The reason that they're that they're in a nursing home is because they don't have that much family available to them, to help them or their needs are such that they're that they're not necessarily getting help from family a lot of them would not normally have had a lot of visitors. So, this is just kind of making the problems even even more significant that we're looking at, we you know it's funny one of our state exacts in another state that the Karen Messer of another state, his own mom died in a nursing home in I want to say the summer, and his, he maintained and this is a person who works in aging services serves aging services providers and watches all the policy out there. He struggled for the early part of the spring you know he said My mom is she's losing cognitive function because of being isolated. And that's what's gonna kill her. And in fact, you know, that's an anecdote it's an N of one, but we're but we're hearing that and of one. But then, then I hear these concerns about safety and health, and even, even those that are, that are trying to find sort of the nuanced solutions are struggling with this question you know if we. Here's an. I was talking before about a national testing program. So we have, we have various whether it's state or federal we have requirements for testing of staff. We do not have requirements for testing for example of nursing home surveyors, we do not have requirements for testing of staff who work in hospitals, as in hospitals, emergency rooms right, we do not have ombudsmen requirements for testing. Everyone in this country should be tested as Tamara says you know this, it's about community spread and the way, if, if nobody can't went in and out of nursing homes, there would be zero covid in the nursing homes, they wouldn't be able to do their job. But if not, COVID doesn't just spring up in a nursing home though it's coming from staff going back out into the community. And if a family member comes in. They need to be tested, just like, same way you would test staff so I think that if we had to, if we had the right tools at our disposal and the right policies in place. You could balance that and I'm thinking the same thing about the essential caregiver solution. What an awesome way to extend staff to say you know you can. We're gonna make your bubble, We're going to make your pod, and it can be that person. As long as it has the right guard rails and as long as there's a testing. If you have an essential caregiver they should be tested the same way, a staff person going in and out is, there should be no difference. And I wanted to also comment on the, on how hard nursing homes do work. You know, we, in our nursing homes, when, when you trigger, when you, when an outbreak happens you trigger a certain testing schedule. And so if you have more than 10% positivity like Welcome to the United States in the community around you, you need to be testing, at a minimum staff and residents who will allow it. You need to be testing, often twice a week, and that that's a pretty heavy duty requirement that's it that's a lot to ask right. Well, we've heard from a lot of providers who say inside my community. I'm testing like crazy I'm following all the rules I'm doing infection control. I have less than 1%. I had one person I had you know one staff person who was exposed. And that's an outbreak, and now I'm testing like that. And I got 10 15% positivity in the community around me. How do we how do we take that into account as well that so I just wanted to agree that yes, things are happening inside nursing homes that people aren't necessarily aware of in terms of infection control in good things. So
thank you for that. Appreciate it. I'll jump in and give my perspective and then I'll move on. I think this is a very great question and I wrestle with it every day I was wrestling with it yesterday as I was speaking with an ombudsman and an administrator about a situation where husband and wife wanted to visit with each other. And we need to find some balance with safety and committed me and while I agree that there's a need for physical health and safety I'm concerned about the mental health of residents that continue to take a backseat. When we see a spike in positive rates and I'm not sure what the answer is. Honestly, I'm not. But I feel strongly that allowing essential caregivers into the buildings to is a step in the right direction like this said you know taking on some of these roles that the staff there will do in terms of ADLs and in terms of the grooming and things like that so it's just trying to find that balance, um, you know, did you want to weigh in.
I was just I was just sending you a note saying, I want to weigh in. This. This is tough stuff. Obviously this is really tough stuff, finding the right balance is indeed a balancing act. But prohibiting visitation by family members or loved ones or ombudsman is not balanced. That is not a balanced approach, complete rejection of fundamental rights, the right of association with those of our choosing is not any form of balance, the balance comes in the form and circumstances as to who may visit and how such visitation can take place. Certainly some form of essential support person or essential caregiver must be allowed in 14 states have done that. I agree with Ruth, we need to also require that when visitors come, they need to be tested. They need to have the peepee they need to be. They need to be a statue, but they need to have the right to behave as staff do. I could elaborate on that but I'll leave it at that, that I want to jump to two more points about about that balance. It is imperative that ombudsmen get into those facilities. That's their job Kelly said it earlier, that is a face to face program. Every means possible must be made to get ombudsman into those facilities, they, despite heroic attempts to do things virtually creatively, you can't do it. I'm a former ombudsman, there's no substitute for being in there face to face, and having a conversation and looking around, and as a result, all the advocates at least are reporting incredible numbers of terrible things that are starting to happen in facilities, because there aren't the eyes and ears of the Ombudsman and the voice of the resident, which is what the Ombudsman represents. I think that, um, and we all been reading about the consequences of the isolation. We know it has terrible constant consequences. We know it kills. In fact, My wife runs a very large hospice said anecdotally, they're very aware of the reduction in the trajectory of diseases among their patients. In other words, they're dying much quicker than they might have otherwise, you know there's sort of a notion in hospice and I'm sure it applies in many other settings that you know mom would hang on till Thanksgiving, because of Thanksgiving. She knows the grandkids are going to get there so I'm going to hang on to Thanksgiving. They're not hanging off any longer, because they're so isolated. My mom died a year ago, in assisted living in a ccrc, I just, I am personally profoundly glad that she's not living through this right now, because this would destroy her and and and we know that's happening so we've got to have that balance but that balance has to allow for visitation, but we have to do the things from a public policy perspective, at the federal and state level and provide the tools, resources to have those get guardrails that Ruth spoke about on done.
Kelly Can I jump in on this.
um, yeah I'll just add a couple of points the way I kind of look at this is. We have to explicitly add knowledge that the goal is not zero risk of covid infection. Right. The goal cannot be zero risk we have to balance the needs for visitation for social and emotional needs against the need for infection control and and so you know it's just a matter of deciding where that where that balance should be. And so I'm just agreeing with everybody, but you know clearly there are parallels to what we're doing in the rest of society right we're willing to take on some risk so that people can go back to work we're willing to take on some risk, so that people can you know go sit outside at a restaurant right and and so you know it's clear that we also need to find a balance in nursing homes, or in long term care facilities in general. The other thing that I would say about that though, is that we have a structure in place. That really values the physical risks over the social and emotional. All the quality measures that we have in place that get publicly reported all the reporting we do on COVID. It's all about, you know, morbidity and mortality and and quality outcomes. Right. And then, you know, you think about the litigation environment as well and nursing homes, don't often get sued for residents having a poor quality of life right they get sued for bad physical outcomes. And so, you know, I think we just have to acknowledge that. You know the underlying structure, does not really incentivize nursing homes to find that right balance, and it might be skewed toward protecting the physical health. of residents against covid infection. And so this is where we really need clear guidance and policy, so that you know so that providers, and families together can sort of find that right balance. You know, even despite the structure we have around prioritizing physical health.
Can I say, you know cuz i. Is it okay if I jumped in Kelly.
Before it Rif.
Okay. Because the reason why we have that structure is because we are working with a regulatory survey insert system that was created a generation ago was created in 1987 based on a report that started to get written in 1982. That's a really long time ago. And we have come a long way in terms of what we know about quality and how important quality of life is even to be talking about this issue, who in 1982 was thinking about social isolation. You know, I mean it's we're we're in a different place and we're using this regulatory structure that has to do with. Oh I know if you don't have the right documentation. You did the right thing but if you don't have the right documentation, we're gonna find you and take money out of the nursing home. That will make things better, like that's not that worked. You know Bill and I were talking about these scarring experiences in the 1960s. That was a different timeline, it was it was a different way of of running services and a way we thought about vulnerable people, when we're better, we've, we've evolved, and it would be nice if if our structures and systems for helping people live great lives. Even when they need some help, could also evolve along with us.
Thank you for that additional comment Ruth, and jumping in Kelly's having some internet issues. So thank you, Kelly for moderating with all of those kind of pre planned questions thank you to all the panelists for your remarks I know there's a lot more to try to get get through in the next half an hour so Diane has volunteered to do her best to compile all the great questions we've been getting in the chat and ahead of time, so she will jump in now to kind of post some more questions to the group Thanks Diane.
So thank you to the panel members so far you guys have been fabulous I think, um, you know, Phyllis and Mike Guldur and I feel like our dreams have been met in terms of all the issues that we could possibly get to in an hour I think we wish that we had much more time then. Then we have. I have too many questions to ask during this next period, Kelly, are you back on or not. It looks like that, so I'm gonna jump in and start with a question that I don't want to let our time expire without asking in his advocates right now. What should we be doing. And I'll start with Bill.
Gosh, where to begin. But I you know of course I'm thinking nationally, I know there's tons of stuff that you need to do an Illinois, as well, but nationally. We've got to get in the, in the immediate term we've got to get Congress to provide relief. We just have to do that. And so I think that anything that anybody in this audience can do to try to move both your own delegation your members of the house representatives and your senators to to weigh in, to try to get Congress to pass another COVID recovery bill, either on its own or attach it to the appropriations for FY 21 which we know they have to address one way or the other because of the continuing resolution that's due to expire on, on December 11 although we're hearing now that they're going to do another short term car until the 18th of December to buy more time, we need them to take action. Work through your trade associations in your organization so they can all belong to one way or the other, from state employees all the way up to their governor who belongs to the National Governors Association your state legislators, even if they don't have influence with Republicans in the Senate. They're members of the National Conference of state legislatures, or the Council of State governments use every advocacy vehicle you have to get Congress to respond and to respond robustly with respect to providing the resources that are needed out there now. I just wanted to mention this sort of an aside, Ruth mentioned the cost of testing. I'm just going to cite some figures that my wife gave me if I can find it in my notes but she she runs she runs a large operation it's true, but her costs for testing right now are running. $39,000 a week. That's testing twice a week, I believe it is on 280 employees. That is $2 million plus per year. Her PP costs, so far in 2020 or $1. million. These are really big costs and, and we need to help, we need to help providers, and if on top of that we need to pay for testing and PP for ombudsmen and surveyors and visitors, you know, we're gonna have to pony up, and so far there's little sign of Congress wanting to pony up those kinds of resources but we've got to do some serious advocacy on every front imaginable to make that happen again. Working through whatever channels we have meeting he is out there doing it for all of those who are members of leading edge Illinois redouble your efforts, you know, members of the M for a every possible Avenue, you can. Thank you, Bill.
ready to weigh in
on either one of us, we're just we're gonna keep agreeing I betcha. I'll just say everything. Bill said and on the I don't have a whole lot more to add to that except that you guys have something. Having worked in this concrete jungle, that's down right by the Capitol for so long. human beings like three dimensional human beings with stories about what they're seeing with their eyes, telling those stories is worth, you have no idea. It's worth its weight in gold. Because, and zoom in a way, give gives you a different and better gives you better access, because what I experienced working in the Office of the Secretary of HHS was a handful of relatively wealthy people went big wealthy providers could come and visit us and tell us what was going on on the ground, and what's going on on the ground in gigantic wealthy provider organizations is not typical of what's going on across the nation with zoom. Anyone can go tell theirs can make an appointment and tell their story. So adding your voice. I'm you know and I know you guys all of us during COVID. We already are running faster than we can run and doing more than we can do already on our to do list, you know, what's keeping us up nights like everything right and every person on this call is going to answer that question I think the same way. But if you can make the time to tell your story on the hill to your members of Congress. Oh, gee, it goes, people remember though they get a picture and they remember, and certainly go to leading h.org we have an our policy Action Center. Feel free to use our action alerts we, the more people that say it the better. And the more they hear from you.
Thank you, Ruth Tamra
yeah I'm, you know, a researcher and I'm not always comfortable in in an advocacy conversation. So I'll just say one thing which is I you know agree with the need for better federal policy and everything that can be done on that front. But I would say most of what's been done about staffing has been more on a state level. From what I see various states coming up with programs to send in strike teams, or in various ways help nursing homes that are experiencing staffing shortages and having an outbreak, to sort of add some personnel, whether that's sending in the National Guard or, or other ways and so I'd say, it would be good to to keep that issue on on the minds of state policymakers to make sure that they're, you know aware of staffing shortages and and see what the state can do to help there, because that to me seems. Probably the biggest crisis in terms of all the shortages we're talking about, you know, over the course of the next few months.
Thank you so I'm gonna move on to a question that has come up in Chicago for a lot we can wb EC our public radio station focusing on the difference in density between for profits not for profits. And I'm going to add in community living this whole idea of like where are you safest and, you know, where does the data lead us in terms of balancing those concerns is that,
let me just start with measures we start with on this one Tamra I know you weighed in, and you were quoted in in that story I believe.
Yeah, um, again, I'll have very much a researcher perspective here. Um, I'm not a huge fan of for profit ownership and health care, just in general, because I think what we usually you know I'm an economist and what we usually think of is the great advantage of for private ownership is you know greater efficiency and, you know, I'm not sure we see enough efficiency benefit in health care to outweigh the disadvantages which is, you know, the free market doesn't work that well sometimes for vulnerable populations. And so with that background, I would say. There's also in the nursing home world, everybody. A lot of people have seen this research, if you look at a comparison between for profits and not for profits. Most of the time nonprofits do better on quality measures than for profits. But, you know, I can't emphasize enough that the causal links. I'm the research on the causal links behind that is really really weak. And so, you know, in many sectors, what we see is that you know nonprofits tend to sort of cater to charity care and, you know, low income neighborhoods and that's not true in long term care. And what we see his nonprofits as came out in that story and the web easy story nonprofits in the nursing home world at least really do cater to sort of more complex care. And, you know, Medicare post acute care and private pay residents and so it's really almost a different service. And for profits are the ones that have the, sort of, you know, larger high Medicaid facilities in poor neighborhoods and so it's really not a fair comparison. And, you know, once you control for all of that we're not actually seeing in terms of like a covid response we're not seeing a big difference between for profits and nonprofits, so I just would sort of caution everybody to be really careful about that is our you know is that model that sort of large census, you know, large medicalized facility. You know what we want, maybe not, but I don't know that. Getting rid of for profit status would change anything about that. So,
you know I come back to kind of what the research says that, you know, there are other predictors of, of which nursing homes are having covid cases and deaths that are actually much more meaningful, I think, than ownership. So, I'll end I'll end it there.
Yeah, I was just going to, I don't disagree with any of that it's and it's all it's way too nuanced for us to really figure it out. But I have to agree with you that paying investors, using dollars that you got from Medicare and Medicaid is probably not a good business model. You know taxpayers support those programs and they should be the dollars that that we as taxpayers pay to do that for, for our country and for all of ourselves for each other, should not be something that investors invest in and make money off of. but not that's not that doesn't mean for profit and not for profit that's just a certain subset of the for profit group. I think that I see committed providers all over I see large and small all over and I think it is. I agree with you tomorrow the other things that are, and there's so many other factors at play. You asked also Diane I think about community, and sort of community versus nursing homes and really glad you brought that up because it's all. That's why we are a continuum organization to it's. There's not a right and wrong there's not a good and bad between community and nursing homes. I don't think anybody says. Hmm, I need some help. Let's see. Should I go a nursing home or get it in the community which I don't know which would I do like nursing homes or not. I don't think anybody would choose the most restrictive most intense service setting, if they weren't driven there by need, and we will always need to have a place where people can go when they have not enough resources where they're living to age in place. Have we made the best of the aging in place thing we have not yet. I think that we can still. We still and this is not i'm not saying, I'm not being a nursing home hater. I'm just saying, I think more people, if we, if we do some major restructuring more people can be supported in community settings. If you look at the Biden platforms caregiver plan that it starts lay out a blueprint for exactly that sound away and embedded puts $400 billion over 10 years behind the plan. Of course, the devil is going to be in the details and we're going to have to start talking, all of us. Everyone in this room, needs to have some views on this and provide some input, but can we structure a really robust meaningful community system that supports people to age in place, including poor people that that are on Medicaid. Wouldn't that be awesome. That would be a really great thing and that could help us kind of fix the balance between institutional and community use.
I'm going to jump in for just a moment, if I may, this is Bill, I certainly echo what has been said about the profit making model, and what it represents and what it doesn't represent, so I endorse the comments that both Ruth and Tamra has set on this, and I'm glad that Ruth has spent a few minutes talking about the community side of things and certainly endorsed that as well. I just want to take a minute and maybe a director's to everybody but tomorrow, particularly, just this Tuesday I guess December 1, a new study was released in California, and examining COVID-19 cases and deaths in California's nursing homes by a number of researchers including Charlene Harrington. So for those of us who have worked in this field we know Charlene work from UCSF for many years but just to highlight from their study. There were four key factors that contributed to outbreaks inside nursing homes according according to the report. This is a California study ownership. Early in the pandemic case rates in for profit nursing homes were up to six times higher than rates and nonprofit and government run nursing homes, now that has that has shifted and that's one of the things they say about reports over time. These factors have shifted size is a big factor larger nursing homes with more than 99 beds had paid straights at least 55% higher than those with 68 or fewer beds in August case rates and deaths were consistently higher enlarging larger nursing home. Staff case rates are significantly higher in nursing homes that were low staffed as the pandemic progressed, nursing homes with an adequate number of registered nurses had greater protection against covid 19 cases and deaths, just to return to the proprietary issue staffing has often been a function of where you choose to spend your money. Whether it's in the number of ft E's whether it's in the wages you pay whether it's in benefit packages, you know, it's the willingness to spend the money, when the investors are saying, you know, we got returns we need returns, you know, show us the reports. And then the fourth one, and really critical particularly later in the pandemic demographics cases were higher in nursing homes at a higher percentage of black or Latino residents. In May, nursing homes with more than 2% black residents had COVID-19 case rates that were about three times higher than facilities with 2% or fewer black residents. It's just out, brand new report worth noting and I'll, I'll send a link afterwards to the report.
If I can jump in and respond to that to
most of that I
think makes makes perfect sense right and I certainly don't want to argue with the importance of staffing, I mean staffing is everything
in there. Everything
is everything. And I think, you know, as I said before, I don't think we're going to change anything more than incrementally, we can, you know, we can try, you know, 20 different quality improvement approaches, we can, you know, change all kinds of things but unless we fundamentally address understaffing and nursing homes we are never going to make substantial changes in Nursing Home Quality so I don't want to undermine that idea at all and even, you know, like I said our own research. From August was also showing that staffing makes a difference we actually found not an RN effect but a sort of total staffing or CNA effect that you know it doesn't help. It doesn't help you prevent the virus from getting in the facility but it can help mitigate a number of cases and deaths. If you have more staffing. The other thing I would say about the research is and I'll say this because I'm also in the middle of conducting a review of all the research that's been done since the pandemic started on predictors of cases and deaths in nursing homes and there are a few state specific studies, a couple of California studies by Charlene Harrington, who of course has, you know decades of experience looking at this stuff. And there was also a Connecticut study by ua Lee at Rochester, and those did find a
sort of more
correlation with quality, and with staffing than. Then, than the national studies but there's this,
this, this large
of of more national studies that because this consistently show that you know, it's all about community
yes staffing matters a little bit, but like the, the, the ownership factors, and other things that were coming out in some of the single state studies, just really aren't there, on a national basis. So yes, those things are important staffing is important. It's just all still dwarfed by communities spread so even if a nursing home is a five star facility does everything right, has enough staff. It doesn't mean the risk is going to go away and so I just keep re emphasizing at points I think it's so important. There are limitations to what a nursing home can do, that doesn't mean
those things aren't important.
So, we don't have very much time left at all and we have way more questions than I can. That we have time to answer but Mike elder had one in the chat room and I'm going to expand upon it. Also, and ask you all to respond to it, it's this balance of lawsuits and actions against facilities for poor care versus providing financial relief and, and the idea that, you know, throwing somebody a big fine at this time when they're understaffed is probably not what's going to help them necessarily improve their care. And just that whole balance of should we put a moratorium on lawsuits, what do we do. Many of you might have seen that 60 minutes piece where when the first pandemic was coming apparent in Washington State. They sent surveyors in and it took hundreds of hours of staff time depriving people of their care during that period. Ruth did you want to start with that one.
Sure, I think I want to start off saying that there are some providers that are not great. And it's really important that we recognize that and we call them out and I wouldn't mind seeing a federal quality assurance system. That didn't keep extending it and extending it and extending it and it said that if providers are not doing the right thing because there's such a. There's so many providers that do the right thing but know how to do the right thing and do it properly. I would like to see, you know, we're not ever going to have a perfect world, but I would like to see us put more energy into continuous quality improvement, the kind we're seeing now actually with with Project ECHO, you know, for years and years and years providers have been saying we need collaborative approaches to quality not punitive approaches, and what HHS is offering now is exactly that through Project ECHO where it's a 16 week session where teams have at all levels of staff, not just the, you know, CEO of all levels, calm and participate every week in, and they teach each other and support they hear didactic lectures from experts, but they also get to support each other with ideas, that's the way we need to keep on building quality. In addition to a survey system. And I think we need to not let providers that are delivering poor care or doing things that that we don't want to see. Done.
Thank you. Yeah.
First of all, I want to compliment Ruth because she gave a very balanced response on that, and that's hard to do. So that was a very good, very good response. I am and I'm glad she mentioned, you know that they're not all good out there because I, over, over my entire career in this. I've, I've really been struck by the reluctance of many in in the nursing home industry, particularly in the proprietary side but not exclusively have been very unwilling to call out the bad apples that are really rotting the barrel. They eat just their their brother, and it's very difficult to do. So a system that relies on that won't work. It just can't, but it's an important thing to acknowledge that. I think this is a time in the, in the pandemic when we have to be strategic and we have to be nuanced about our regulatory apparatus, but it is not the time to just impose on across the board moratorium on the regulatory apparatus, or on lawsuits. And I think that was underscored by Ruth's comment, there are still people that are poor performers, that would be performing poorly, with or without the pandemic. They're probably taking advantage of the pandemic because they don't have oversight. There needs to be, we need to have the survey survey system in place, we need those ombudsman in those facilities, and in Illinois, one of your biggest shortfalls In my opinion, and we could just, you know, we can have a discussion about this. You do not have access to the APS program in long term care facilities. So that means residents of long term care facilities, who are victims of abuse, neglect and exploitation, do not have access to APS, that is one of the apparatus for dealing with abuse that just isn't available to the residents of your nursing homes, or your assisted living facilities, I believe, I'm not sure about that. So, at a time when we're seeing incredible amounts of financial exploitation. I will say, just like, Ruth acknowledged as we all know there are some really poor performers and there's some real bad characters out there and continue in this business without question. There are also bad families, you know it's it's not that every family is loving and dedicated to caring to their loved ones. This is a prime opportunity to be ripping them off right now. And we know that in the elder abuse world and the APS world. their preponderance of perpetrators are trusting others include family members. So, it is not the time to relax the eyes and ears that try to monitor for both quality and monitor protecting rights, and monitor for preventing elder abuse. Thank you, Bill.
Timur did you want to weigh in on that one I have one final final question because I know we're totally running out of time right now but did you.
Um, yeah. In the interest of time, I'll just say I agree with that and I think I agree with both of those statements and I think that dealing with the sort of repeat a chronically poor quality facilities, is a long range problem, I think that'll still take a lot of work and I don't think the research indicates that those facilities don't exist, they certainly do. I just think, you know, we have to treat this pandemic as a crisis and somewhat separate. A short term prevention of deaths from the long term, ongoing quality problems. Thank you, tamaryn.
there are so many great questions, I think we need to talk about having another panel and related questions, there's questions about bullying and facilities the LGBT population and facilities. And I think, just some of the basics about that bill alluded to a little bit in terms of where does elder abuse investigations start how does that how do they relate to ombudsman I think we've improved that now Illinois, Bill, and then the role of public health in terms of doing some of these investigations and parsing that out but one question Tamra that you might be able to answer that. I think I've seen a couple coming to me on is who is keeping track of rates of infection in facilities, nationally, I think we saw that one link but also an independent living in slips supported living facilities which are supported through public aid. Do you have you looked at that at all.
So there are big holes in some of the data.
the only thing we have is the CDC CMS data that's collected on nursing homes that is medicare medicaid certified nursing homes. Many states also collect data on assisted living and other kinds of long term care facilities. And then there are projects like I think Kaiser Family Foundation and then the. The New York Times. One of the New York Times website tracking projects, also tries to compile all of that data and include assisted living as well. Your times I think there might be a Hopkins site as well. Kaiser Family Foundation and then if you're just interested in nursing homes. It's the CDC CMS data.
Thank you. I think Bonnie, that it's time for you to ramp up I think we've more than run out of time.
Yeah. Thank you Diane thank you again to the panelists. In our last 20 seconds here, we want to invite folks to share any announcements in the chat I see a few that have come in, when on Project ECHO one that all highlight that we on the rush side are hosting next Thursday that we'd love for you all to join and think you'll be interested in is a new study that a collaborative with Russia involvement carried out with trying to understand the aging undocumented population in Illinois and project demographic numbers and working with a lot of organizations to understand how we can prepare from a health and social care perspective to care for folks as they age. So you can do that chasey.org slash blog I'll send the link out as well in our follow up to register we'd love to have you join. And our next planned as a roundtable is on the first Friday of the month in february two months from, from now and that'll be exploring mortality rates and COVID-19 as Diane just alluded. There are many many kind of unaddressed questions from today and so we might consider as a committee putting together some sort of additional pop up question because we know how how timely and pressing a lot of these concerns are so if you do have any interest in collaborating with us on that we welcome your participation to let me know. As I mentioned at the beginning, early next week I will send out these slides and the recording from today so you all will have that as well as the transcript. So thank you all for your time this morning thank you again to our panelists and the organizers and we hope everyone has a safe and rejuvenating weekend.
Thank you, Bonnie.
Thank you, Bonnie Thank you Diane Thanks everybody.
everyone. Be safe.
Take care of it next year.
All right, thank you everyone I'm going to close us down. Have a nice weekend. Hey, Is it.