9-16-20-JIA



Combatting Discriminatory Crisis Care StandardsSeptember 16, 2020Presented by Gelila Selassie, Justice in Aging, and Alison Barkoff, Center for Public Representation>>Hi, everyone this is Gelila Selassie from Justice In Aging. I'm joined by Alison Barkoff, and we're here today to discuss combating discrimination and access to medical care during COVID-19. Just a quick background about Justice In Aging, we are a national organization using the law to fight senior proffer tee, to secure access to healthcare, economic security and the courts for older adults with no other resources. We've been around since 1972 and we're primarily focused on groups who have been excluded from justice, so women, people of color, LGBTQ individuals, et cetera. A couple of housekeeping points, first of all, everyone is on mute. You can use the question box on the platform for any substantive questions or technical concerns. You can e-mail training@justiceinaging if you have any problems. We have materials on our resource library and materials for this webinar under the handouts section, and we also will have a recording of this. And if you need captions, they're available and there's a link in the Dropbox to access those captions.So at Justice In Aging we acknowledge systemic racism and discrimination and we're addressing that the effects of racism and differential treatment. We seek access in the courts for lower income adults and we recruit, support, and retain staff in order to reach those goals. I'm going to turn it over to Alison to go into sort of the substantive matter with crisis standards. I think I mentioned this, but we'll say that we will save a few minutes for questions at the end, so go ahead and put it in the chat box. Alison, feel free take it away.>>Alison: Okay. Great. Thank you. And I hope everyone can hear me okay. My name is Alison Barkoff, and I'm the director of advocacy at the center for public representation. The center for public representation is a national non-profit legal advocacy organization who has been doing disability advocacy for more than 40 years. We use legal strategies, systemic reform initiatives and policy advocacy to enforce the civil rights and expand opportunities for inclusion and community participation and empower people with disabilities to exercise choice in all aspects of their lives. We are one of the legal backups to the national network of protection and advocacy agencies and work in coalition with many legal advocacy organizations on behalf of people with disabilities and older adults. I'm going to start off today giving a little bit of a backdrop kind of pre-COVID for framing our conversation about concerns about access to and discrimination and accessing healthcare in COVID.For many people with disabilities, there's a long history of discrimination in the healthcare system. Starting with forced sterilization of people with disabilities which was allowed by the U.S. Supreme Court to more recent experiences of people with disabilities being flat-out denied life-saving treatment like organ transplants, people with disabilities being denied healthcare due to medical futility laws or being steered towards healthcare options like do not resuscitate orders, all that are based on kind of the lack of value of the lives of people with disabilities. Day to day, people with disabilities literally can't access healthcare because of inaccessible medical equipment or safe situations with medical professionals and doctors who make assumptions about people with disabilities being unable to be involved or even make their own healthcare decisions, and then there are other types of healthcare policies like quality-adjusted life years, which has been used to be a barrier to things like medication for people with disabilities. So people with disabilities really came into the COVID-19 experience already having experiences with discrimination in healthcare. Next slide.The same discrimination certainly applies to other populations, and older people with -- face ageism and bias in healthcare. Many doctors and medical professionals have stereotypes about older people and their cognitive abilities very similar to how people with disabilities are often treated. Oftentimes treated medical issues are misdiagnosed or dismissed and treated as just old age, and the same problems that people with disabilities have in terms of access and accessibility of medical professionals certainly applies to older adults. And then as we've all been talking about certainly intensely over the last several months inequity in the healthcare system certainly combines to particularly impact disabled and older adults of color. Next slide.So as we are thinking about access to healthcare and discrimination I'm going to talk about the range of federal antidiscrimination laws that are important tools for stakeholders to be able to use whether it's through state-based advocacy or legal strategies like the complaints that we're going to talk about a little bit later in this webinar. So there are a couple of federal laws that apply to people with disabilities and healthcare. The first is title 2 of the Americans with Disabilities Act, and it prohibits disability discrimination by all public entities. And that includes states as well as public hospitals. Title III of the Americans with Disabilities Act prohibits discrimination in places of public accommodation. And that reaches to include private healthcare facilities. And then Section 504 of the rehabilitation act is the third federal antidiscrimination law that prohibits disability discrimination by any recipient of federal funding, and most healthcare providers and hospitals receive federal funding through sources like Medicaid or Medicare. Next slide.There are also important antidiscrimination laws that apply to healthcare for older adults, and the Age Discrimination Act is very similar to Section 504 that applies to people with disabilities. The Age Discrimination Act prohibits discrimination on the basis of age by recipients of federal assistance, so that would cover most healthcare providers, again, because of Medicare and Medicaid, and it's also important to recognize that many older adults also are protected by disability discrimination laws and qualify as people with disabilities. And then there is antidiscrimination laws, Title VI that apply to race, color, and national origin and prohibit discrimination again by recipients of federal assistance, which would apply to most healthcare providers. Next slide.And finally there is a healthcare-specific antidiscrimination law. In Section 1557 of the Affordable Care Act contains its own antidiscrimination provision that prohibits discrimination on the basis of race, color, national origin, sex, age, or disability, and HHS-funded or administered healthcare programs and activities. What's really important about all of these antidiscrimination laws and as we'll talk about with some of the legal complaints and advocacy is that they don't just prohibit intentional discrimination. They prohibit the use of criteria or methods of administration that have a disparity impact on protected groups, so that means we can look at policies that may not directly say disability or say age or say race, but when we can show that they disproportionately harm people in those protected classes we can challenge those. One thing I do want to mention is that Title VI, which covers race and national origin and color, as we're thinking about bringing litigation in federal courts, there's no private right of action, so private organizations like Justice In Aging and CPR can't bring those claims, but the federal government can enforce Title VI. Next slide.So that's kind of the backdrop before we started into theCOVID pandemic. As the COVID pandemic really began in mid March, very much people with disabilities are often kind of ca canaries and really can think about their own personal experience in discrimination and access to healthcare especially in other types of emergency situations, and as a community we really started raising red flags about what might happen. We saw what was happening in other places in the world, in Europe where people with disabilities and older adults were being deprioritized, denied access to ventilators, had high rates of death, and there was immediately a push from the community to say to H HS, the Department of Health and human services office of civil rights it's critical that there be national guidance out there to make sure that any of the types of entities that are covered by these antidiscrimination laws know what the legal requirements are around rationing of care. Very early on there was a letter from the national council on disability -- it's an independent federal agency that advises the executive branch and congress on disability issues, and they immediately said there's a dire need for this type of guidance. A national coalition, a consortium for citizens with disabilities and Justice In Aging and over 100 national disability groups are part of, again, had a huge push with HHS, and even congress saw there was an immediate need. When we didn't see that guidance coming out, we felt like we needed to show that rationing of care was not just a theoretical issue but a real issue, and advocates across the country started looking in their own states. I think many of us weren't aware that crisis standards of care had been developed. Many in the flu pandemic in the earlier times, and when we found those documents and dusted them off, we saw that many of them had discriminatory provisions in there, and so by late March disability advocates had filed four complaints with HHS's office of civil rights to show there really was an immediate need for care -- for guidance. and by the end of March HHS office of civil rights did issue a bulletin that was focused primarily on what federal laws require around disability discrimination.Next slide. So this bulletin I think is a really important document that's -- we've been able to use both in coalition, advocacy at the state level, as well as in the complaints that we have filed with the office Of Civil Rights. This guidance says that the purpose is to make sure that covered entities know their obligations under federal antidiscrimination laws that prohibit discrimination on the basis of all of the protected classes that I spoke about, race, color, national origin, disability, age, and sex, and being very clear that disability discrimination laws remain in effect during the crisis. I think there was a concern that and even some suggestions from states or hospitals that the rules were different in a pandemic, and this is very important to make clear that wasn't the case. In accordance with federal disability laws and other antidiscrimination laws, it was clear that decisions about access to care cannot be based on stereotypes, assessments of quality of life, or judgment about a person's worth tied to their disability or age, and consistent with all of these federal laws, decisions about treatment have to be based on individualized assessments based on the best available medical objective medical evidence. Next slide.In addition to the provisions that prohibit direct discrimination, covered entities also have legal obligations to make what's called in these laws reasonable modifications, to take steps to actually do things differently for people with disabilities or older adults who might need changes in policies to be able have equal access to medical treatment, and those can include things like ensuring effective communication for people who have disabilities. For people who have physical disabilities there's a need to make those kind of physical accommodations or provide assistive technology or other type of assistive devices. For people who have limited English pro efficiency, there's need provide interpreters and for people who may need, because of cognitive disabilities plain language, covered entities also have those obligations when necessary to make sure people can equally access treatment. Next slide.So that was the guidance that came out in March. That was very focused, again, on disability and age. As we know and as we saw the pandemic really play out, in large part because the longstanding historic inequities and systemic racism in our healthcare system we saw this hugely disproportionate impact that COVID has had on communities of color and particularly people who are black, and in July the office of civil rights issued a second bulletin that was focused on discrimination on the basis of race, color, and national origin that really highlighted the disproportionate impact as well as the increased need for data collection and tracking of impacts by race and ethnicity. The bulletin makes sure that recipients of federal funding know their obligations and included in that list are things like adopting antidiscrimination policies, ensuring accessibility of testing and care sites, and that includes addressing barriers like transportation that communities of color may face, and then ensuring that people of color are not denied access to ICU care or denied access to hospital administrations or subjected to excessive wait times. Next slide.And I think with that I'm going to turn it over to Gelila to talk about discrimination and crisis standards of care.>>Great. Thank you so much, Alison. Now we're going to pivot a little bit to look into some of the crisis standards of care.Sometimes crisis standards of care are usually the most common phrase. You might hear crisis of care standards, allocation for scarce resources, but it's all medical rationing. So what they are to give a bit of a background is it's a framework used by clinicians when making decisions to ration medical resources if there's not enough supply to meet demand. During COVID in particular there's concern that a surge in cases would mean rationing of things like ICU beds, ventilators and medication, but it's worth noting that other resources like blood or dialysis could also be rationed. Rationing decisions should be based on who is more likely to survive the acute hospitalized illness or injury. For example, if there's a shortage of ventilators for two patients and one of those patients is likely to die even with treatment, then it's appropriate to give the ventilator to the patient most likely to survive. What we want to make sure is those decisions as to who is is going to survive the episode is based on like Alison said an individualized clinical assessment using the best objective medical evidence not based on any general assumptions or stereotypes about a patient. One quick note is that what's complicated about these crisis standards is that they can be specific to a hospital or hospital system or states as a whole that have adopted their own statewide medical rationing policy, so that's something to look into. Here we have some resources from HHS describing the crisis standards of care as it applies to civil rights and then center for public representation and other advocacy groups created a very helpful framework to consider to look through when you're looking at crisis standards and if they're equitable. So these are the common issues that we see in crisis standards. And these are the issues that disability and aging advocates have filed office Of Civil Rights complaints on. They've filed most of these if not all. I'll go through most of these. Alison will delve into the reallocation of ventilators. Advocacy in this area is changing rapidly. I have an asterisk because that's an area that we're right now this week working on, and so it's entirely possible that in a couple of weeks we may have some established policy or re-may still be in a little bit of a haze, so we ask that you continue going back to our resources there.Most crisis standards include what's called SOFA scores as a measure of a patient's clinical progress. And so if it involves a series of tests measuring different systems in the body to see if a patient's health is declining. So it sounds objective and fair, but it can be a problem for people with disabilities because it can assign an unfavorable score based on the patient's disability and not their actual current health status. For example, a Glasgow coma scale is one part of the SOFA score. Patients with him nations to verbal or motor response can get a reduced score even if they have nothing to do with their hospitalized event. So a patient could have difficulty extending, flexing, giving verbal responses. If they were to be hospitalized for COVID under a traditional SOFA evaluation they would get an unfavorable score making them most likely to receive rationed care because of these underlying limitations, but it has nothing to do with COVID. So to resolve this we advocate for crisis standards to include modified SOFA scores or MSOFAs which are based on the patient's baseline. In the prior example the patient with a neuromuscular disorder would be given an assessment when they were admitted and then those serve as their baseline, then they'll get periodically assessed, usually daily, and they can have those daily assessments with the initial assessment to truly measure if their health is declined or at heighten risk of mortality instead of looking at their underlying disability impermissibly. Another issue we see in crisis standards is the consideration of a patient's long-term survivability, instead of looking at the survivability of a hospitalizing event crisis standards can reduce access to treatment when rationed if a patient is viewed as not surviving long term. The phrase long term can be vague. Sometimes it refers to a period up to five years, and it will always, always disfavor older adults and people with chronic illnesses. All crisis standards should have guiding principles to save the most lives, but when crisis standards use long-term survivability, we're not just looking at saving lives they're looking at saving life years which can be very ageist and ableist. Aside from discrimination to older adults and people with disabilities, long-term life expectancy is very difficult to predict compared to shorter life expectancy. There's quite a bit of data showing that doctors more accurately predict life expectancy within a few days or a few weeks compared to several months or a year. This makes long-term survivability provisions and crisis standards really problematic because survivors could be denied life-saving treatment because they inaccurately predict someone has X amount of time to live. It's also concerning because long-term survivability usually looks at underlying health conditions to determine life expectancy. And so this creates equity issues because people of color are more likely to have co-morbid conditions that reduce their life expectancy. People of color are likely to have higher rates of conditions like diabetes, hypertension and obesity and they're likely to have worse outcomes or severe complications from it. Articles have noted that these discrepancies aren't due to any sort of biological factor but due to socioeconomic obstacles that stem from systemic racism and access to healthcare. So long-term survivability decisions effectively punishes older adults by limiting access to life-saving rationed resources because of these could he co-morbid conditions. This perpetuates health inequities to communities that are already ravaged by COVID. So some crisis standards give preference to life-cycle principles which give preference to people who have not gone through,quote, all cycles of life. It's really just a justification to discriminate against older adults and it's an ideology that's inconsistent with the Age Discrimination Act and can be a little bit arbitrary if you're comparing a 50-year-old versus a 55-year-old for example. It also invites providers to make judgments about a patient and most critically it is not based on an individualized clinical assessment rather it's the opposite in making very generalized assumptions.So crisis standards also include exclusions, where if resources are rationed people who either have a particular diagnosis or belong to a certain age group are automatically excluded from receiving treatment. They may be given palliative care or discharged all together. This is very concerning. Exclusionary criteria can be broad, including people with dementia, muscular disorder or requiring assistance with activities of daily living, and it's the polar opposite of an individualized clinical assessment. Similarly, we've seen some crisis standards include age categorizations, so one category can be for people who are 65 to 79 and another category for people aged 80 and up. The 80-year-old is automatically discharged or triaged for palliative care only, but a79-year-old could get a life-saving treatment like a ventilator, so that's incredibly arbitrary and ageist and something we'd encourage you look at. Alison will also go into detail some of the resolutions in the last few weeks on resource intensity and DNRs. Some recognize the need to preserve resources which can lead to discrimination against people who are viewed as resource intensive, that can be harmful for older adults and people with disabilities who are more likely to face this perception. We've also been hearing about providers steering or encouraging patients towards do not resuscitate orders which instructs providers to -- which instructs providers to not do CPR if the patient is in respiratory or cardiac distress. We've even heard some facilities demanding a DNR prior to admission, and that basically says we're only going to provide care to the extent that we don't have to extend too many resources if you go into distress and that sort of conditional care is very upsetting. Moving on to age-based tie breakers. This is a rapidly-developing area we're working on, so there may be redevelopments we'll post about. Some crisis standards include tie-breakers provisions which would apply in a situation where two or more patients with similar assessments like with the same MSOFA score are vying for one resource, so there needs to be a mechanism to, quote, break the tie. Tie-breakers should not be based on discriminatory factors. We're waiting for some clarity regarding ageist tie breakers. We've seen where crisis standards have explicitly said that while MSOFA and other non-discriminatory assessments are done if there's a tie the younger patient automatically gets the scarce resource and in a way it's delaying the discrimination for a tie-breaker situation as opposed to the initial assessment. Other non-age-based tie breakers could be acceptable. We typically recommend things like a lottery or some other random allocation. Some crisis standards have used first come, first served to break the tie, but that can worsen health inequities since many communities already have challenges accessing healthcare. We talked about a lot of what we don't like in the crisis standards. I'll briefly talk about what we do like to see. One is antidiscrimination provisions, so this would be a statement saying we will not discriminate based on these groups. Typically that's the federally protected classes like age, race, disability, but in some states including California, we were able to get the state to expand that category to include weight and size, no discrimination based on weight and size or ability to pay, perceived self-worth, homelessness, so that's been very, very helpful because it expands the rights to those groups that aren't very obviously protected federally. We'd also like to see inclusion for training for providers on crisis standards as well as antidiscrimination training and includes a bias, you want to make sure there's reasonable accommodations especially for modifications to hospital visitation policies which Alison will go into some detail on. And then we usually like to see appeal language so that people can -- patients can appeal triage decisions. And in California we were actually able to get automatic reversals for any triage decision that is based on discriminatory factors. These standards should be publicly available and accommodating for disability or limited English proficiency. We want to make sure a person's personal equipment will be allocated and finally a guarantee that decisions are based on individualized clinical assessments using the best available medical evidence. And now I will turn it over -- back to you, Alison, to talk more about OCR advocacy.>>Okay. Great. Next slide, please. So Gelila and I are going to talk about two different strategies that we've been using as advocates. They both have pros and cons and they certainly are not mutually exclusive. We have both been trying to do state-based advocacy through broad coalition building. We're going to talk about that in a minute. But we've also been trying to use the complaint process with HHS's office of civil rights to try to create through resolutions of these complaints some kind of national precedent and standard to really have ripple effects across the country. We've joined together with national and state advocates and disability and aging and racial justice advocates together and have filed more than a dozen OCR complaints since March and they fall into three categories I'm going to talk about. The first is about discriminatory crisis standards of care. We really started off focusing on disability and that really was the grounds for the March 28th OCR guidance, but then we really broadened that out and thought about other types of claims and disproportionate impact based on age andrace discrimination focused on structural health inequities and as Gelila mentioned the impact on other types of populations whether it's based on immigration status, ability to pay or poverty, so the complaints have gotten much broader as we've seen the coalition work get broader at the state level. I'm also going to talk about hospital visitor policies and then the third category of complaints are discrimination and access to COVID-19 testing and I suspect building off that we may be thinking about similar types of issues related to vaccination looking forward. Next slide.So as Gelila mentioned, many of the provisions that she talked about that are common in states' plans have really formed the basis for our complaints, and what I'm going to focus on is actually the resolutions by the office of civil rights because I think it's an important tool for us as advocates to use and say this is what the federal agency that is charged with enforcing these laws has said at a minimum state crisis standards of care have to do, and their work has really evolved over time. Most of the work with office of civil rights often takes a very long period of time. They do extended investigations and findings letters, and we've been able to work with the Office of Civil Rights to move quite quickly given the dire needs facing people during COVID. So we filed a complaint in March, and by AprilOCR reached their first resolution. It was in the state ofAlabama where there was a policy that had the type ofcategorical exclusion of certain people with disabilities including people with intellectual and cognitive disabilities as well as people above a certain age. And the Office of Civil Rights worked with the state of Alabama. That resolution Alabama agreed to completely pull down their discriminatory policy. They put ute general policy on the grounds of non-discrimination and advocates have been continuing to work with the state on developing a more detailed plan on how resources will be allocated, so that first early resolution I think sent a very clear message that you cannot exclude people. It's not just putting certain people at the back of the line. It's not letting them get in line at all based on disability or based on age. The next resolution happened a few weeks later in the state of Pennsylvania which had a number of problematic things in their policy, some categorical exclusions. It focused on long-term survivability and other quality-of-life judgments that really deprioritized certain people with disabilities. This was the first case where OCR and a state kind of reached a resolution on the state making changes to its policy, so the good thing was that all categorical exclusions were eliminated. It went from a 10-year long-term survivability, long-term survivability was taken out. It focused on individualized assessment, no reallocation of personal ventilators, and a really positive thing in this was that triage officers had to receive training ton implicit bias and culture competency. But there were still some problematic provisions that are in Pennsylvania policy, so it allows a consideration while it's a short-term survival as we discussed earlier, that really should focus on immediate survivability of COVID. But this looks and allows a consideration of survival up to five years, and it does allow age-based cycle-of-life tie breakers. Next slide.The next case I think really was one that I'd encourage people to look at. And that was quite a good policy that came out of a resolution in Tennessee. Again, the policy that we had challenged had categorical exclusions, deprioritizing people with disability, and it really built off some of the things in Pennsylvania and took it to a new level. So not only did it remove categorical exclusions, but it addressed the duration of need and resource intensity, which is another way that people with disabilities and older adults can be deprioritized. Unlike Pennsylvania, which had a short-term survivability of five years, this looks only at imminent mortality, and this was the first policy that specifically required reasonable modifications in the SOFA tool as well as modifications to visitor policies in hospitals and all long-term care facilities. Next slide.Finally the most recent resolution -- and I'm sorry I have the date wrong on this one. That was late August is when this resolution happened just a few weeks ago. It also was a very similar policy that had categorical exclusions and long-term survivability, and I think the Utah resolution kind of took us into some new areas. As was mentioned earlier, oftentimes people with disability or older adults are steered into do not resuscitate orders or their treatment is conditioned on that, and the resolution and new plan specifically prohibits that and requires that people have to be educated about all treatment options, and then it really reemphasized some of the important points from the Tennessee resolution around no consideration of duration of need and resource intensity, no categorical exclusions, no reallocation of ventilators. It again had a really good and short short-term mortality focus, and also had reasonable modifications to SOFA. I do want to flag that like Pennsylvania it did include age as a a tie breaker, which is incredibly problematic. So those are the resolutions to date on complaints for crisis standards of care. I think they have legally some rippling effects across the country. I want to briefly touch on hospital visitor policies because federal laws do require reasonable modifications of no-visitor policies when necessary to ensure equal access. It's the thing that we probably get more calls about at CPR and through the PNA network, and there may be times where people need in-person support due to intellectual or cognitive or communication or behavioral needs. The policies absolutely can take into account safety such as requiring that in-person support have PPE, and we have seen that there are some statewide policies that exist that are quite good around hospital visitor policies, states likeNew York and New Jersey, Oregon, California, Alabama, and a few states do apply these to long-term care facilities. Next slide.We have filed one complaint, and, again, I think this has had ripple effects across the country challenging the state of Connecticut, statewide hospital policy which was narrow and excluded many people who needed in-person support. It was limited to people with intellectual and developmental disabilities who had received state services, and in June the Office of Civil Rights did have a resolution with Connecticut that required all hospitals to allow designated support persons for any type of disability, so it was cross disability, age, when people need those type of in-person support. It has specific requirements around hospitals providing PPE to support persons to keep them safe and had procedures for hospitals to use to screen support people and, also, focused on how people who are COVID positive can still get support. Next slide.There are some additional areas where we have either filed complaints or have had ongoing conversations about the need for guidance with the Office of Civil Rights. We have heard about and filed complaints about inaccessible testing programs where there is a statewide program that is a drive-thru that doesn't make accommodations for people who don't drive themselves or have access to transportation or in congregate care facilities. We continue to be concerned about how visitor policies in long-term care facilities are impacting people particularly people in nursing homes and other congregate facilities that need in-person support, and we just submitted comments and are engaging with the Office of Civil Rights around ensuring that vaccine distribution is fair and non-discriminatory and that the risk that people with disabilities and older adults and other marginalized communities face are included in this. The last thing I'll briefly touch on is making sure people understand the resolution process. This is a process, an early case resolution that OCR can use to relatively quickly engage with the state and it's more in the vain of technical assistance. There's not a formal investigation or findings letter, and the case is not involved with a formal settlement agreement. It's resolved just with a revision of the state or provider policy. Next slide.The positive of this is that with each of these OCR resolutions it's not only making a change in the state but we've been able to lift up these resolutions setting kind of national precedent and have a ripple effect across the state. And stakeholders can use these resolutions in their advocacy in states, and it's a way that we've really been building precedent for legal principles not just to be used in this context but to be used in the context of future guidance potentially around organ transplantation or medical futility or quality. Sometimes states will respond to the Office of Civil Rights even if they won't respond to stakeholder advocacy, and it is a relatively quick process. Next slide.But there are some limitations, and really the resolution depends and the quality of the resolution and what's in there beyond the kind of clear black and white violations of law really depends on the willingness of the States. While we have filed complaints, we are not directly part of negotiations. OCR negotiates with the state. We've been able to continue to have some communications with the state, but it is not our resolutions, and so OCR may agree to provisions that complainants do not like. OCR's focus is really on legal violations, and so Gelila is going to talk about stakeholder advocacy can be much broader and in the crisis standards of care, like in California and in other places, it can cover a much broader set of issues. Next slide.And I think it's back to Gelila.>>Yes, thank you, Alison. And so like Alison said, I'm going to talk about some of the examples we've had with stakeholder advocacy and then I believe Stephen will also comment for a little bit at the end. In addition to OCR complaints, you've been very involved in this sort of informal advocacy. When I worked for a state advocacy we're not necessarily working for state officials, although we can, but if the crisis standards are limited to a hospital system then we'll advocate with -we're talking about some of the more local advocates in that sense. We partner with PNAs, disability rights groups, aging advocates, and health advocacy groups, and these coalitions can be incredibly helpful to establish these improved crisis standards, and it can lead to a resolution without involving OCR. One of the first states we did this coalition-based advocacy was in California. Justice In Aging, DRC, and other groups saw problematic crisis standards that were drafted by the department of health, so we wrote a demand letter highlighting our concerns and went back and forth with the state officials and consulted with providers to make edits to the standard, and then the final product ended up much more equitable and appropriate compared to the original proposed standards. We have a link to the press release and a summary of those crisis standards. After we reviewed those initial crisis standards the next step was to find progress that could help us establish a game plan which is when we reached out to disability rights and other advocates. I'll put in a plug for Alison and my organization to say to please reach out to us to help you work on some of these issues in your state or region. We've had a lot of success. We want to make sure you feel supported and we're happy to answer questions or other comments you may have regarding your state CFC. With our coalition partners we deviled strategy that was heavy on the amicable resolution side of things, by that I mean Justice In Aging and our partners have a good relationship with this state and it seemed clear that from our initial conversations that they were very eager to work with us and quickly recognized the problems and crisisstandards. So in that instance we were willing to draft notes -- even though we were willing to draft an OCR complaint, and we did start one, I believe, we ended up not needing to file it because the state was so open to our comments and our concerns. So this is all sort of a precursor to the demand letter. Don't hesitate to utilize OCR if you need it. We often draft our demand letters and OCR complaints at the same time and hold off filing the demand letter -- or the OCR complaint until we hear back from the state on the demand letter. In the demand letter it's important to recognize the challenges of the COVID-19 crisis and how unprecedented this situation is. These are very difficult situations, and that has to be appreciated by all the parties. You also want to affirm that a public health crisis is no excuse for discrimination and you want to cite to OCR frequently because that's really the only precedence we have. The demand letter after you highlight those problems it's important to suggest a meeting or follow up with edits and recommendations to the standards so they know you're not just there to point out the problems, you're actually there to help find a solution. And Justice In Aging and CPR both have care-rationing sections on our websites with some of our past work in this area. Once we were able to make those improved edits of the standards and hopefully it gets adopted, the next step is to ensure training and compliance with those standards. In California we were lucky that the state adopted a statewide standard. It can be very localized, and so if that's the case you may have an added step of trying to encourage your state to adopt the standards statewide so you don't have different standards being applied. Next is training. Healthcare providers should be made aware and receive the new crisis standard as well as disability and aging advocates. Some advocates have developed rights sheets to make available for people who are concerned, and after that providers and advocates will also want to establish a system to monitor compliance with standards and to report any issues. One more challenge is that these standards may not be binding on local providers. They're more of a framework or guideline. So in California, we've had to shift our focus from developing good crisis standards early on and now we're in a position where we're keeping up individual provider issues and policies. Recently we had a meeting with the state hospital association in California who agreed to partner up with us, so the benefit is that's another provider network to help us ensure these standards are complied with. One of the biggest benefits to coalition-based advocacy is that as I mentioned you get expanded protections beyond what OCR would acquire. Instead of just age and race and disability discrimination, you can make sure crisis standards don't discriminate based on weight and size, ability to pay, homelessness, perceived social worth, and that's a huge, huge improvement that probably could not happen through an OCR complaint. We also were able to add provisions for antidiscrimination training, which, again, OCR will likely never mandate. Other benefits is that it's a fairly amicable process. You're two parties working together to seek a resolution, so it's not quite adversarial which can create opportunities for future collaboration between providers and disability and aging advocates on future health initiatives. Some challenges is that providers and officials are not going to engage with you, so maybe even being in denial that they will need to ration medical resources, that's a major hurdle. Actually accessing the crisis standards can be difficult. States and providers may not be willing to release them. One thing to note is that PNAs cannot use their authority to access crisis standards but again it's more work, and it would be better to make them publicly available for stakeholder input. We've also seen where hospital systems develop standards but, again, they're not adopted statewide, and they're not finding on providers, which is again very difficult. Lastly, whenever there is concerns about antidiscrimination litigation is always a great route to take. We're not suggesting that can't happen here but would be very challenging because there's no real precedence in this situation, and so with that said, Stephen, if you want to jump in and quickly talk about some of our advocacy in other states.>>Sure, thanks so much Gelila. I want to add a couple of practical tips that would like people to consider, and this is drawn from both the evolution that Alison described that has happened over the last six months from the very first complaint in Alabama to the one that was resolved recently in Utah, but it's also drawn from some very successful campaigns that have been launched in various states. The first I think is to, as Gelila was saying, think about the coalition. In Massachusetts our coalition included 42 separate partners including all legal services programs, public legal programs, prisoner rights groups, uniquely almost all the racial justice leading groups, and we had several progressive public officials. The coalition with public officials, particularly congressman Presley and others, made an enormous difference in terms of pressure, media, and ultimately success in achieving a collaborative negotiation process. The other coalition partner that was unique there and we're now building it in Texas is healthcare professionals. Remarkably actually because the healthcare professionals are the ones who have to implement these guidelines, they not only have a lot of wisdom and some fairly interesting perspectives, but they also have a vested interest in trying to make sure there is transparent consistent process. So we brought in doctors from all the major training programs in and around Boston. They formed their own healthcare alliance, and that healthcare equity group has continued beyond just this particular issues of standards of care and are touching on issues of eviction, return to school, sports, testing, and everything else. The second issue to mention, which is reflected in the coalition is the opportunity for intersectional advocacy. I think with the murder of George Floyd, the whole problem about healthcare and health inequities has resurfaced as a racial justice issue not just a legal or disability discrimination issue. The third point is, as Gelila mentioned, whether you're using OCR or state-based advocacy, every state is different in terms of who establishes the crisis standards, who implements them, whether they are subject to any kind of licensing or state oversight, or whether they are just uniquely hospital by hospital. Texas has eight regional entities, each of which have their own crisis standards. And so it becomes challenging to figure out who you're negotiating with. The last point that I think there is a strategy that you can use that blends together state-based negotiation with OCR, and that is what we did was we wrote a complaint. We actually drafted a very detailed 18-page single-spaced complaint to OCR, and we sent it to our governor, our commissioner for health, our public health director, and any number of other people including -- and said to them we'd give them a short amount of time before we filed the complaint and before we released that complaint to the press. So I think there are ways to use the OCR process as a threat. You may have to act on that threat, and you need to be prepared to do that. But it opens the door to be able to go in both directions at least sequentially. So let me stop there and see if there are any questions.>>Thank you so much. We did see questions about OCR bulletins. So we have on our resource page here links to OCR guidance as well as CPRs medical rationing page which has a host of very helpful information as well as Justice In Aging, and you can find local protection advocacy in your state with that website. So now I'm moving on to questions. We have time for just a couple. One question, Alison, this is maybe a good one for you since you were involved so early on. When we were running out of ventilators early in the pandemic were you aware if rationing decisions were made back in March on who was most worthy?>>I think a lot of what we're talking about about is these formal rationing plans. We are not aware of states that have activated their plans and actually denied ventilators based on that, and I think the kind of next generation of complaints, but we're focusing on situations we're seeing is a little more informal type of rationing of care where I think there are hospital professionals who are being conservative about making sure they're not running out of care and we're seeing whether it's through pushing to DNRs or medical futility or saying you're not really a good candidate, so I think that's kind of been the problem. The media, every time points to someone who was denied something based on crisis standard of care, we have not been able to find those cases, but we have seen a lot of cases and gotten a lot of reports of more informal care, and I think we kind of had an early bump in March over the summer when there was another spike. We had a big concern. A couple of states like Texas and Arizona were starting to go activate their plans, and we are concerned we could see another bump with that again.>>Thank you. And then another question that came up. I think this will be our last question. Has the issue of protection from liability come up in any state?>>Yeah, so I'm happy to follow up with anyone who's interested in this. A lot of us, including CPR and Justice In Aging, have been very involved in some of the concerns that have come up around liability shields. I think at this state there is about 23 states that have these type of liability shields in place in a whole range of circumstances, and that was something that was put on the stable as part of the last COVID package that did not pass congress, but it was on the table. I think we have a lot of concerns about that, not just from the rationing standpoint but actually from the standpoint of quality of care that people are receiving in a number of settings, including in particular, the high-risk situations for people in nursing homes, and both of our organizations have a lot of materials about those liability shields for people who are interested.>>Thank you. I think that's all we have for today. We will follow up with any questions that we didn't get to through e-mail, and we want to thank you all for joining us. Please don't hesitate to reach out to us by e-mail for any questions or additional advocacy. Thank you. ................
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