Access to Nondiscriminatory and Equitable Healthcare for People with Disabilities and the Continued Lessons of the COVID-19 Pandemic

LOU ANN BLAKE: Good afternoon, or good morning, everyone, depending on where you are. Welcome back to day 2 of the 2022 Jacobus tenBroek Disability Law Symposium. We had a number of really fantastic workshops this morning. I hope you were able to participate in at least one of those. This afternoon, we have our first plenary session of the day, followed by a session of workshops, and then our final plenary session of the symposium. Before we get started, a number of quick Zoom housekeeping items. If you are not actively speaking, please have your video turned on and please be sure that you are muted. 

So our first plenary session today is Access to Nondiscriminatory and Equitable Healthcare for People with Disabilities and the Lessons Learned of the COVID-19 Pandemic. And here to introduce that panel is Deepa Goraya, who is a public rights project fellow at the Delaware Department of Justice, and she is a member of our fabulous 2022 Jacobus tenBroek Disability Law Symposium committee. 

DEEPA GORAYA: Thank you, Lou Ann. I am here to introduce this next panel, which is going to be discussing the National Council on Disability's recent reports and initiatives on access to equitable health care for people with disabilities and the use -- and using the North Carolina P&A's response to medical rationing as a case study in asserting the value of disabled lives in an emergency, as well as to explain the applicable laws. And the panelists are Amy Nicholas, senior attorney advisor, National Council on Disability. R. Larkin Taylor-Parker, staff attorney at Disability Rights North Carolina, and Amged Soliman of National Council on Disability. Unfortunately, our final panelist, Ana Torres-Davis, cannot make it today because she is ill. But we welcome our other panelists and turn it over to them, thank you. 

AMGED SOLIMAN: Good afternoon, everyone. I'm going to get things started. As Deepa mentioned, I'm Amged Soliman, senior attorney at National Council on Disability. We'll share our work and then look forward to hearing more from Larkin a little bit later as well. Let me first say I wish our colleague Ana Torres-Davis good health, as she was not able to attend today. She actually was going to discuss NCD's progress report regarding COVID-19. So in her absence, we welcome all of you to go to and look up that report. Lots of wonderful information there. But in the meantime, I would say that we could say that we learned a lot of other lessons regarding health equity for people with disabilities during the pandemic, as will be a surprise to none of you. And I'm sure some of those lessons learned and the way they come into play for health equity for people with disabilities will be noted here and there throughout our presentation. 
I'd like to first go over the NCD's framework released not long ago on health equity for people with disabilities, a topic we've been working on for a number of years, which will be a shock to no one, but we began to focus on like a laser a year ago when President Biden appointed Andres Gallegos to be the new chair of the National Council on Disability. And it's our new chair's priority, among many, to address health inequities among people with disabilities. So with that, we set out to create a framework for health equity for people with disabilities whereby we present our recommendations. We formed what we call our dream team of experts in the field of health care and disabilities to help advise us and help instruct and draft our recommendations, as well as our interactions with the community. 

And we put together a framework that we believe will be very fruitful when acted upon. And after I discuss our framework, we'll start to trickle down into some of the specific reports that NCD put out, and the way those reports relate to health equity, but also the pandemic that we're all unfortunately experiencing. 
So, with that, I'd like to discuss our framework, and I'll begin by saying that there are over 35 recommendations that we make in the report, but there are four core components that we highlight, that we believe are essential to achieving health equity for people with disabilities, essentially we believe all our recommendations are essential, obviously, but these four core components we believe are where things really need to sort of... these four components need to be used as sort of a spring board, the main things that must be done, and also tend to the other recommendations that we make in our framework. I'll quickly go over those main four. And just note, again, that obviously, there's a need for this framework, in that there's over 61 million people with disabilities in the United States. Health equity certainly is an issue. And it's something that can no longer be ignored. 

We begin with the first component. It's something that many in the policy field have discussed, and it's an idea that's been thrown around for quite some time, but it really is crucial, and that is the designation of people with disabilities as a medically underserved population. Now, that's something that would have to happen legislatively. Because whereas medically underserved population designation happens through the Health and Human Services administration, and it's based on geographic locations. You know, you take a specific geographic location, you look at the population there, are there health disparities, yes, we should designate them as medically underserved. Obviously, people with disabilities live all across the United States. And of course, that's how it should be. I mean, we've moved away from the horrible extremes of locating people with disabilities in centralized locations, in institutions. So what would have to happen for people with disabilities is they would have to be designated -- excuse me for using the term, but it's a term used by law -- as a specially underserved population. That's something that has to happen legislatively through the Health and Public Services Act. We've seen this for a few other communities -- the homeless, migrant farm workers, residents of public housing -- but this is something that would have to happen for people with disabilities as well. And with that designation, there's a plethora of benefits that can be enjoyed by the population that is designated. 

So I'm going to include federal funding for federally qualified health centers, and also loan repayment programs for medical providers that agree to treat the population that's designated as medically underserved. So, you need to incentivize providers, and certainly loan forgiveness is a good way to do that. There's also higher Medicaid and Medicare reimbursement rates. Certainly a problem is that a lot of people with disabilities are on Medicare and Medicaid, and if there are not enough providers participating in those programs, then it's more difficult to find health care providers. So how do you solve that problem? Well, you increase the Medicare/Medicaid reimbursement rate. That's something you get from SMUP designation. 
And there's also federal research preference and funding, and certainly more research is helpful. And there's many other benefits beyond that. But just getting that done can go a long way in achieving health equity for people with disabilities. 

Now, that is something that has to happen legislatively. Something else that can and should happen, whether you designate people with disabilities as medically underserved legislatively or not, something that should happen either way is a designation of people with disabilities as a health disparities population. And that is something we believe can happen administratively, and a great deal of benefits come with that designation as well. That would certainly advance health equity for people with disabilities, and that's why NCD's recommendation is that that designation happen regardless of the SMUP designation. 

Health disparities population designation would happen under Minority Health Education Research Act of 2000, and it indicates that there's an overly more prevalent rate of disease, morbidity, or lower survival rates in that population compared to the health status of the general population, and that's certainly the case for people with disabilities. Now, with that designation, you get significant research funding, among other benefits. 

It also is a means by which you help encourage members of the health disparities population to enter the fields of medicine, technology, and science, so their interests can be better reflected in those fields. But beyond that, it also authorizes the Secretary to award grants, contracts, or public agreements to public and nonprofit private entities to carry out research and implementation research to reduce disparities in health care outcomes and implement culturally competent care. Now, that's crucial, and we'll get into health care curricula in a bit, but that's something that happens with HD designation. It also prompts the Secretary to convene a conference on health outcomes, including the role of education in cultural competency and publish the outcomes of that conference, which is also helpful. So these are two things that NCD believes would decrease health disparities. 

The second core component -- I apologize, I'll try not to eat into anyone else's time -- the second core component is also crucial, and that's comprehensive disability clinical care and competency training among health professionals. 

So, there are a few medical schools that train their students to treat people with disabilities. The overwhelming majority of medical schools do not have such curricula in place. The same is true for residency programs and other health care training programs, including nursing, etc. So, clearly, it's a problem. I mean, how can you treat people with disabilities if you're not trained to treat people with disabilities? And certainly, we've heard many many horror stories over the years and decades of patients that just don't get quality health care because their doctors are not trained to provide health care to them. I think of intellectual disability. The patient doesn't get a proper checkup because the doctor assumes they're not sexually active. Or the paraplegic whose doctor checks the eyes, ears, and throat, and the doctor doesn't check anything below the waist. Because they don't have the accessible equipment, weren't trained to know they need the accessible equipment. It's a real problem. 

So, something that needs to happen is standardize disability care and competence training of health care professionals. Now, there is a section in the law, Section 5307 in the Patient Protection and Affordable Care Act, and it essentially says that Health and Human Services can draft model curricula for medical schools to adopt themselves. That is a mechanism that we believe should be used. But in the interim, it's also prudent for health care professionals and medical schools to do this out of their own volition. As it is also prudent if the mechanisms we found whereby this would be a national requirement. Because essentially, as I intimated before and stated clearly, you really cannot provide equitable health care to people with disabilities unless everybody who is a health care provider is trained to do so. Now, NCD has seen some success in this area on the dental side. We have recommended to the Commission on Dental Accreditation that they change their curricular requirements nationally, stating that all dental students have be to trained to manage patients with disabilities. It's something that started in July of 2020, and we've already seen positive impact. That occurred shortly after NCD  worked with the American Dental Association to change their code to no longer avoid treating patients solely because of disability, and that change in the model code changed the model conduct in laws. Essentially, some schools would be graduating students that were not in compliance with the law, then, in a few states. So this is something we need to see happen on the medical side as well. 
Component number 3, and I touched on this before, accessible medical and dental equipment. It is a problem. I mean, obviously if a patient goes into a doctor's office or dentist's office and their equipment is not accessible, how are they going to get proper treatment? So, NCD does believe that the U.S. Access Board's 2017 standards should be adopted, and this is something that also relates to the Department of Justice, in terms of the Americans with Disabilities Act, enforcement, also, of HHS's Office of Civil Rights with respect to Section 504 of the Rehabilitation Act of 1973. 

The fourth component, I know I'm running out of time here, but I wanted to touch on the fourth component, which is improved data collection. It is a real problem. Obviously to get appropriate health care, you have to get appropriate data. So with respect to medical surveillance systems, electronic health records, things that other people haven't thought of before, data is crucial. We also want to note the National Academy of Science's comprehensive study of HHS's data systems and compliance is helpful as well. 

We'll take questions and comments at the end of our presentation, but I did say we would also discuss some of NCD's reports and specifically how they relate to health equity, and the lessons learned from the pandemic. 

Before I hand it over to my colleagues, I would like to note a report that I was proud to help NCD put out, and that is our recent report regarding oral health care for patients with intellectual and developmental disabilities, and the issue of Medicaid. So I'll briefly go over the findings of this report. It was just released. And it has some really helpful information there. And that is essentially that there is a return on investment that occurs if states and the federal government were to address this issue. So adults ages 18 and older with intellectual and developmental disabilities experience significant barriers, as I'm sure you all know, to obtaining oral health care relative to adults without IDD. Most adults with IDD rely on Medicaid for medical and dental care. Currently, 12 states do not provide adult Medicaid beneficiaries with coverage for basic dental care, exacerbating barriers to oral health care faced by those with IDD. Our report was motivated by the central research question of, should the Centers for Medicare and Medicaid Services require state agencies to implement Medicaid reimbursement and payment policies that promote access to dental care for folks with IDD, and could that ultimately be a cost effective policy in the long term? We, because costs vary by state, we surveyed a variety of state and local programs. Here's a finding I think you'll provide interesting. In the 12 states that currently don't provide dental benefits, NCD estimates the costs of providing full dental benefits to adults with IDD would be more than fully recovered through reduction in hospital admissions as a result of treating several chronic diseases that result from lacking preventive oral care. In total, the recovered costs would total approximately $27.3 million nationwide, and $8.7 million for states. The total estimated costs of providing these extensive dental benefits to adults with IDD is estimated at $19.6 million annually, with state governments responsible for approximately $7.3 million of that cost. 
Now, as I was saying before, the issue of oral health care for people with IDD, that is a health equity issue. That's how it ties in. It's something that should happen as a matter of equity, as a matter of compliance with the ADA, etc. 

But whenever you have a program that is -- that costs a certain amount of money, but you make or you match in revenue as a result of putting out that program, the same amount of money, that's a win. So even if you get a few dollars more than the cost of the program, that's certainly a return on investment. That's worth it. Aside from the health equity issue. 

So, we believe that this is something that should happen, again, as a matter of health equity, but also because it just makes sense fiscally. Because adults with IDD are 3 times more likely to receive basic dental care if they live in states with Medicaid dental benefits for the general adult population, relative to adults with IDD that live in states without these dental benefits. 

In the 12 states that do not provide basic Medicaid dental benefits to adults, 7 have Medicaid benefits for some of those with IDD, and typically serve a limited number of people each year with specific target groups who meet specific eligibility requirements. They do not provide dental benefits to all adults with IDD in states that have them. Adults with IDD are 50% more likely to receive basic dental care in waiver states compared to nonwaiver states, and even among those with extensive dental benefits, only one third of adults with IDD get dental care every year. So our report is finding that there are other problems to be addressed that remain. So quickly to go over some of NCD's recommendations that were born out of the report, our first recommendation is for states to be required to provide extensive dental benefits. Our second recommendation is if it is not required through federal law, states should have requirements through waiver programs. 

Third, funding should be addressed through state Medicaid programs, including demanding the number of Medicaid providers with expertise in treating adults with IDD, in other words, linking higher reimbursement rates to education about treating adults with IDD, and addressing transportation barriers, and improved oral care through daily providers in state programs and coordinating services between DD agencies and state Medicare providers may improve access to oral health care. Fourth, managed care needs to be tied to reimbursement rates for oral health providers treating those with IDD. And fifth, cost analysis needs to be provided and therefore expand access to operating rooms. 

More research on this issue does show return on investment in policy makers were to implement our recommendations. NCD will be following up with another report in roughly a year or less, whereby we address the Medicaid reimbursement rates and other issues regarding incentivizing providers. We look forward to that as well. But I think the fundamental point here is that health equity is crucial and needs to be addressed. We welcome you to go to to look at our framework for health equity for people with disabilities, and to look at our specific reports that delve into specific and crucial issues that are born as a matter of health equity. With that, I'd like to turn it over to my colleague, Amy Nicholas, who will also discuss other NCD's wonderful reports. Amy? 

AMY NICHOLAS: Thank you, Ged. Good afternoon, and thank you so much for the opportunity to present to the tenBroek conference today. I am excited that I get to provide you all a sneak peek at the findings and recommendations from NCD's soon-to-be-released report, Disparate treatment of Puerto Rican s with Disabilities in Federal Programs and Benefits. It is scheduled to be released in May and you'll find it on our website, First and foremost, before I get into the findings and recommendations, it seems to silly that I need to state this, but we need to understand that Puerto Rico residents are American citizens. They should be afforded the same rights and benefits as us on the mainland. Unfortunately, as NCD discovered during the research of this report, Puerto Rico and other U.S. territory residents are not treated equitably on many levels, but especially in regards to distribution of benefits that directly impact the person with a disability's health. 

Before I get into our findings and recommendations, just a little bit of a background, on the island of prosecutor, in 2017, Puerto Rico was hit by hurricane Maria, which devastated the infrastructure of the island. In the aftermath, we had 4.3 million Puerto Rican residents who found themselves in a crisis: Power outages were experienced for well over 6 months, there was a lack of food, water, and fuel supply, which left an uncertain future. Just as they were recovering from that, in January of 2020, Puerto Rico experienced a 6.4 magnitude earthquake, which further destroyed homes and businesses, decimating the economy yet again. And then a mere two months after the earthquake, COVID hit. It resulted in a mass exodus of Puerto Rican residents to the States, and because of the mass exodus, because of the natural disasters, Puerto Rico's federal tax structure, their ability to take care of their own, they're just struggling financially. And more background on Puerto Rico: Puerto Rican residents, the preponderance of disability is about 22%, which is similar to that in the States. 

What is drastically different is the poverty rate. Puerto Rico's poverty rate is at 43.5%. It is 48% for people with disabilities. The poorest state in U.S. is Mississippi. Their poverty level is 19.6%. Over half -- I mean, less than half of Puerto Rico. 

This report -- and keep that in mind as we talk about findings and recommendations as well -- I mean, this report found disparate treatment in federal programs pertaining to Medicaid, Medicare, SSI, SSDI, transportation, housing, and employment. This afternoon, because I don't have all day, or we don't have all afternoon, I'm just going to highlight findings and recommendations regarding access to health care issues. We'll start off with Medicaid. With Medicaid, as I assume many of us know, the federal government guarantees matching funds to states for qualified Medicaid expenditures, normally at least one dollar  for every state dollar spent in the program. And there are other factors depending on the state's makeup, including the poverty rate, in determining whether they receive additional assistance regarding Medicaid reimbursement. Puerto Rico is not set up that way. In fact, Puerto Rico and U.S. territories' Medicaid are funded by a block grant program. Unlike the 50 states and the District of Columbia, the federal medical assistance percentage, which is the percentage that the federal government pays towards Medicare costs, is only applied to the funds as long as there's fundings or appropriations left in the block grant funding. Once the block grant funds are exhausted, Puerto Rico is responsible for the remainder of Medicaid expenditures for the rest of the fiscal year. To give you an idea, if Medicaid was distributed in Puerto Rico as it is in the States, Puerto Rico's FMAP, the federal medical assistance percentage, would be 87%. Instead, the percentage that the federal government pays is approximately 13%. 

The Puerto Rico block grant appropriations for fiscal year 2019 was $367 million. That's million with an M. Puerto Rico's total Medicaid expenditures for 2019 was expected to be $2.8 billion. Again, as I mentioned, only 13% of expenditures were covered by the block grant, leaving 87% responsibility of the Commonwealth of Puerto Rico. And if you recall what I mentioned just a few minutes ago, they are woefully... they're not prepared. They don't have the financial capability of footing the bill for these expenses. And because of that, Puerto Rico doesn't even provide all of the mandatory Medicaid services to its beneficiaries. In fact, they only provide 10 of the 17. And NCD warned of the dangers of providing Medicaid via a block grant in a prior report entitled Medicaid Block Grant Program Implications for People with Disabilities. Stating that people with disabilities would lack insurance coverage for these services and would not take advantage of preventive services, or not at the same rate either. And, I mean, our predictions came to fruition. Because of the expanse of Medicaid funding shortfalls that contributed to Puerto Rico's debt crisis, the disparate treatment of Puerto Rico's program with regard to the States is the most significant and the primary reason for the problems faced by Puerto Rico's health care system. It has left the island in a vulnerable financial position, especially persons with disabilities, who are at special risk, who already face disparities and access to health care. NCD recommends that Congress amend the Social Security Act to replace the Medicaid block grant program in Puerto Rico, as well as the other U.S. territories, with an uncapped federal matching system equivalent to the Medicaid program provided to U.S. residents. 

And another disparity within the Medicaid program in the States versus the U.S. territories, including Puerto Rico, is the Medicaid demonstration grant, money follows the person. The MFP grant funds states to transition people with disabilities out of nursing homes back into the community. Since 2005, this grant has helped over 100,000 people transition back into the community. The grant's not available in Puerto Rico, or to anyone in U.S. territories. So NCD recommends that Congress amend the Deficit Protection Act of 2005 to extend the Money Follows the Person demonstration funding to Medicaid recipients in U.S. territories. 
What we also found as well, and has become a recurring issue, is that during and after the hurricanes and the earthquakes, when people from Puerto Rico with disabilities were displaced and they had to come to the mainland in order to receive desperately needed medical assistance, they ran into not having insurance when they got to the mainland. Because Medicaid on the island does not transfer to Medicaid in the States. It's a state-run program. So this issue places persons with disabilities who are already at a high risk with their health conditions, at an even greater risk of institutionalization once they reach the mainland of the U.S.  

So NCD also recommended in the report that Congress require CMS to establish a process for Medicaid portability among states and territories during disaster, so we can ensure uninterrupted health maintenance and medical care in a least restrictive environment for Medicaid recipients. 

Now, that's the major issues with Medicaid. We go into a lot more detail within the report. So I definitely recommend that you all visit our website to check that out in May. 

One of the other issues of disparities that we found was also within the Medicare program. Again, as we know, a federally funded health insurance program, and to be eligible, you must receive SSDI or SSI benefits. 

Well, SSI is not an available benefit for people with disabilities residing in Puerto Rico, and the alternative Puerto Rico residents with disabilities receive what is called Benefits through the Aged, Blind, and Disabled program. AABD is not equivalent to SSI, nor is health insurance part of the benefit. And that's discussed in the report as well. One of differences between the health care program of Puerto Rico as opposed to the States is the co-pay under Medicare Advantage plans. For a person with a disability under Medicare in the U.S., your co-pay for durable medical equipment is only 20%, whereas in Puerto Rico that co-pay is 50% for durable medical equipment. 

Medicare beneficiaries on the island are already unduly burdened by a higher list price for DME because of the cost of shipping. When one factors in the co-pay amount for DME, it makes for much needed DME almost unattainable for many people with disabilities on the island. 

As a quick example, in the States, a complex power wheelchair, which is something I use, the list price is $60,000. Medicare recipients in the U.S. are required -- are subjected to a 20% co-pay, which is 12,000 bucks, right? Well, in Puerto Rico, that same wheelchair essentially, the list price is less, it's $45,000. Even though it costs more for that wheelchair to get to Puerto Rico, the DME dealers collectively have lowered the price drastically in order to hopefully make it more accessible and affordable to residents in Puerto Rico. Because what happens is the Medicare recipients, remember that 50% co-pay? They're paying 22,$500 for that wheelchair in order to receive it in Puerto Rico. $12,000 for U.S. residents. $22,50000 for Puerto Rican residents. And if you remember the poverty line, the co-pay required for this wheelchair is greater than the per capita income in Puerto Rico. The per capita income in Puerto Rico is $12,000. A person needing a wheelchair should not be required to choose between food and rent, or independence and mobility. The out-of-pocket expenses for DME under the Medicare managed care program is designed to keep Puerto Rican as without access to desperately needed DME. So NCD proposes that Congress amend the Social Security Act for residents of Puerto Rico and other U.S. territories so that the benefits are equivalent to benefits provided to residents lives in the United States, which includes modifying the co-pays. 
My presentation was just a sneak peek of two of the ten federal programs and policies that NCD assessed in its upcoming report. The full report discusses the impact of the Jones Act, Puerto Rico inventory taxes, SSI, SSDI, the Nutrition Assistance Program, education, employment, housing, transportation, and emergency management. 

The anticipated release date, as I mentioned earlier, of the report is end of May. I wish to thank you all again for giving me the opportunity to give y'all a sneak peek, and I look forward to hearing you all reviewing it in May giving us your feedback. I now pass the mic over to Larkin Taylor-Parker, and thank you. 

R. LARKIN TAYLOR-PARKER: Good afternoon. I'll try to keep this brief and conversational, since we're getting toward the end of our conference and our week, and I know we've all spent a lot of time on Zoom. 
I would like to talk with you about the North Carolina P&A's response to the COVID-19 pandemic, and the entirety of our response is outside the scope of this presentation and also the time we have today. But specifically, the issue of medical rationing, the process of insuring health equity in medical rationing for people with disabilities, especially the multiply marginalized in the communities we serve, and people who have limited ability to reduce their own exposure to COVID-19, either because of things like living situation or need for personal care, or because of public-facing jobs, throughout the different stages of the pandemic, and some lessons that we learned along the way that we hope will be useful to others in years to come. 

After the initial few weeks of scrambling around, trying to figure out work from home on a scale that we had never done before, what I kind of suspected from the beginning began to bear itself out. And that was that the pandemic would hit people with disabilities, especially people with disabilities who are multiply marginalized, pretty hard. As nursing home outbreaks spread across the country, and studies came out seemingly every day demonstrating that a different group within the population we serve is particularly vulnerable to bad outcomes, like ICU admission and death, from COVID-19, we soon became involved in working on medical rationing issues. 

To our state's credit, a stakeholder group was convened pretty quickly early in the pandemic to get medical rationing considerations underway. We had three basic issues come up over the course of 2020 and 2021 around COVID and medical rationing, and the first was what we would do to allocate ventilators in the event the surge of supply would outstrip demand. 

The second, as medical device production ramped up and the ventilator concern was ameliorated was staffed beds. And the third later in the pandemic was vaccine allocation. 

So, early in the pandemic, again, thankfully before there was a significant surge underway in our state, and the situation became urgent, the state convened a group of stakeholders to deal with that initial issue of ventilator allocation, that kind of gradually morphed into staffed bed allocation, as the pressure on the medical equipment supply was relieved. 

And I think that this group did actually include many of the right stakeholders, including a variety of groups from the medical community and from marginalized populations. But the outcome of the discussions on a new set of crisis standards was in some ways not very fruitful. Not everyone who was invited to participate was necessarily fully heard, and some quasi-governmental organizations in North Carolina's medical community didn't always seem to give great weight to the concerns that the representatives of marginalized populations brought up. That led to a situation where provisions that would have had a significant discriminatory impact on disabled people got into our crisis standards. One of the most disturbing things from my organization was the use of long-term lifespan predictions, which are fuzzy, subjective, and very subject to all kinds of biases, being included as a way to ration care if medical resources ran short in a terrible surge. We pointed out our concerns that these sorts of considerations were not only inequitable and unethical, but in violation of federal law. And unfortunately, certainly not everyone, but there were some in our medical community who just didn't seem to see legal compliance as a priority. 

And that left us in a kind of limbo. The state ultimately wouldn't formally adopt these crisis standards of care. And the standards were ultimately -- I am sorry -- my apologies! I had someone pounding on my front door. I think he was lost. 

As I was saying, we were left in a kind of limbo. In which there were standards. We assumed in a bad enough surge, they would be adopted somewhere. But it was  unclear the extent to which they would be used, which could lead  to discriminatory decisions in some places and ad hoc decisions in others. 
So when negotiations informally stalled, we worked with state and national partners to file an OCR complaint. The process was long, in part because I think so many advocates across the country had to do the same thing. And... I'm glad that we filed early, by late spring of 2020. We waited, and we watched the outcomes in other states. And I'm also glad that we followed up with OCR in the winter of 2020, when late 2020, when we did enter a significant surge, and conditions were worrisome. I think we got close, probably, to formal rationing, and hovered there for several weeks. And ultimately, the resolution of that complaint led to some important changes, such as more assurances around effective communication, the removal of those long-term lifespan predictions, and a prohibition on reallocating a personal ventilator that someone brought to the hospital. And that was the resolution on the acute care rationing side of things. The vaccine allocation process, which kicked into high gear in late 2020, the fall of 2020, when it was clear that some vaccines were nearing EUA, was a messier process. Initially, we felt like it went very well. Again, a collection of stakeholders with diversity of experience and expertise was convened. We were invited and were able to speak to the needs of the disability community, and representatives of rural and poor parts of our state, communities of color, and immigrant communities also were included. 

And this time around, it really seemed like we were heard. And we were able to put a plan together that seemed equitable and workable, and, like, vulnerable people probably wouldn't be forgotten and overlooked because generally their representatives were in the room, pointing out problems with the plan and working to fix them. 

Unfortunately, vaccine allocation was subject to a lot of pressures at the local, state, and federal levels, and the process became messy because of the federal decision to slash vaccine deliveries to states that were having trouble burning their doses early on, instead of doing something like, maybe, sending help to states that were having trouble getting vaccine out into communities. 

This really punitive approach to allocation at the federal level put pressure on the state, and our initial, very equitable plan that followed the science on who was at high risk and really tried to get shots in the arms of people who needed them urgently was scrapped, kind of quietly and abruptly, between Christmas and New Year's of 2020. 

And that made early 2021, those months before vaccines were just everywhere, in the late spring, a struggle between different interest groups over doses. We scrambled to roll with the punches and advocate for people with disabilities, especially those who were front-line essential workers and those who really couldn't limit their exposure to other people because of a need for personal care in community settings, to get vaccines. 

Our plan became much simpler and much more age-focused. And that left many younger people with disabilities in community settings, as long-term care facilities had been pretty well saturated with first doses by the time the plan changed, in the  lurch in many cases. While we were able to get some equity measures back in, distribution was ultimately not as we hoped. We had to do a significant amount of education on the need for people getting home and community-based services, sometimes from caregivers, personal care assistants also working shifts from just virus-ridden nursing homes, why that was necessary too. And ultimately everyone who needed an early dose did not get one. But I think our education efforts paid off, and we certainly did see some success around opening up access for people getting home and community-based services. 

In the few minutes that we have left, the lessons that we learned along the way, I think, were to go ahead and act early. I think the most helpful things that we did, the things that were most protective of the people we serve, were to jump into rationing issues quickly, participate in the crafting of initial plans, instead of reacting later, but then following up on that initial advocacy. We were also very proactive with getting out information, and that took significant staff time, because we had to learn a lot about the virus. We had to read studies. We had to track down information from reliable sources. But as CDC messaging shifted and conflicted and seemed subject to many competing interests, we didn't feel that we could wait for it, and used social media and other methods such as creating videos to get good information out. 

I think another thing that I would suggest advocates think about for future emergencies is that it takes many kinds of experience and expertise, and strong connections throughout the region that you serve, to handle these events well. Legal work was crucial. The OCR complaint, and also some litigation my colleagues did around hospital visitor policies. 

But our communications team was important to getting information out, and our disaster relief team played an essential role in getting people with disabilities vaccinated. 

Every coalition partner we had was incredibly helpful, our biggest supporters when things became difficult, especially around issues like vaccine equity. They were absolutely critical to our success. And I think everything you can do to have relationships both with other disability issue organizations and intersectionally with other organizations working on behalf of marginalized groups, will be very useful, and it's good to build those relationships well in advance of when a crisis comes. 

My only other suggestion is that in these emergency situations, and I think this is something that we generally handled well, but we were certainly rolling with the punches and had to adopt to over time, is to recognize the need to be nimble and adaptable, the number of things your organization may not be able to control, such as changes to emergency conditions, like variants. The behavior of different levels of government, different decision makers and gatekeepers. The spread of misinformation, and other factors. And to take good care of your own staff. This certainly involved people working long hours on incredibly emotionally taxing issues. And I think it was helpful that our organization took some steps to encourage self-care and not stigmatize things like taking PTO during the duration of the crisis. And those are essential tools as well to being successful in these situations. And keeping staff able to be successful and able to continue to serve clients and constituents effectively. 

That's all I had for you today. So I think I'll go ahead and open up the question and answer portion of the presentation. Thank you. 

LOU ANN BLAKE: Thank you to all of our panel members. If you have any questions, please feel free to put them in the chat, or you can unmute yourself and ask your questions. 
KEVIN: Hi, this is Kevin Williams, can you hear me? Great, I'm with Colorado Cross-Disability Coalition. And I've looked a little bit at the website, and I was wondering about, we've run into the problem of former Attorney General Jeffrey Beauregard Sessions, wonderful guy, withdrawing the advance notice of proposed rulemaking with respect to furniture and equipment, which included medical equipment. And we certainly have had a large number of cases in which the courts say, well, if there isn't specific guidance on the issue, then there basically is not, you know, that it's not law. So it looks like you guys are working very hard. I'm trying to get that reinstated. Do I have that correct? The folks at NCD? 

AMY NICHOLAS: Ged, you're on mute. 

AMGED SOLIMAN: My apologies! I was saying, it is NCD's recommendation that U.S. Access Boards standards draft regarding accessible medical equipment should be adopted as regulations. That guidance is crucial. So that is our recommendation.  
AMY NICHOLAS: And if I can add in there, too, Kevin, don't hold me to it, but I'm pretty sure that DOJ did put this on their MPRAM for on the fall agenda, or the spring agenda! 

KEVIN: Right. My question was, has there been any response on that. Understandably, they're quite busy. But this is one of those areas that we have to just undo everything that happened in the last four years, and it's a huge one for us, because we do a lot of accessibility issues. Thank you very much. Great presentation. 

AMGED SOLIMAN: Thank you. 

LOU ANN BLAKE: Any other questions? 
Well, if there's no other questions, thank you very much to our panel members for this important presentation on a very important topic. We will go to a break until 3:15 p.m. Eastern, when our final session of workshops will start, and then at 5:00 p.m. Eastern, we will have our final plenary session. So we'll go into a break, and we will see you in about 45 minutes. Thank you.