What’s Up WID: Institutionalization of People with Disabilities



>> Nicholas Love (Host):
Hello, everyone, and welcome to the debut episode of What’s Up WID, the World Institute on Disability’s biweekly podcast, where we’ll be discussing what’s up in the disability community across the globe. My name is Nicholas Love and I’m honored to be a director at WID and I will be your host for What’s Up WID. Our first guest is none other than WID CEO and executive director, Marcie Roth. Following the 9/11 terrorist attacks, Marcie worked to improve emergency preparation and disaster outcomes for people disabilities and build assessable disaster-resilient communities.

>> Nicholas Love (Host):
Marcie was then appointed by President Obama to the United States Department of Homeland Security, Federal Emergency Management Agency, also known as FEMA. There, she served as a senior advisor to the administrator from 2009 to 2017. She also established and directed the Office of Disability Integration and Coordination. Both at FEMA and after launching the Partnership for Inclusive Disaster Strategies, she led national and global transformation towards disability-inclusive emergency management, disaster risk reduction, and community resilience. She became WID CEO and executive director in 2019 where we are very blessed to have her, where she is bringing her lifelong commitment to advancing the rights of people with disabilities and expanding disability leadership locally, nationally, and globally.

>> Nicholas Love (Host):
Today’s topic with Marcie will be institutionalization. We’ll be talking about nursing homes and congregated settings for people with disabilities. Welcome, Marcie, and how are you doing today?

>> Marcie Roth (Guest):
Well, thank you very much, Nicholas. I’m doing just fine. Thank you very much. As we continue to address this very challenging failure of systems to do what is necessary for everyone to have an opportunity to live in our community, this is a really important topic to me. I’m glad to be here and glad to be talking about this with you.

>> Nicholas Love (Host):
Wonderful. We’re so glad to have you as well. Marcie, tell us about congregated facilities and the institutionalization of people with disabilities in the US and globally.

>> Marcie Roth (Guest):
So, many people think that this is a small and insignificant matter. The use of congregate facilities to house people with disabilities is something that has gone on unfortunately for centuries. It has never been a good place for people with disabilities to be, and for many, many years, decades, there have been efforts to replace the institutionalization of people with disabilities with community services, the kinds of supports and services that enable people with disabilities to live independently, to make choices. And yet despite all these best efforts, in the US, there are about two million people with disabilities living in long-term facilities also known as institutions.

>> Marcie Roth (Guest):
And many of these, but not all of them, are nursing homes or what are known as skilled nursing facilities. Among those two million, we’re also talking about group homes and places where people who require mental health supports are held in facilities. Then there is an additional two million people, many of whom have disabilities, who live in carceral facilities; jails, detention facilities, and other places where people are incarcerated. So, this is again not an insignificant number of people although the very humanity of these people is often treated as though it is insignificant.

>> Marcie Roth (Guest):
Globally, the institutionalization of people with disabilities is a huge number. And this includes children, babies, children, as well as older people. And just as it is in new US, in some cultures, it is far less common that people are served outside of their family home. But even in places where it’s assumed that people are not living in congregate facilities, in fact, if you really drill down, even in those places, many people with disabilities are in fact in these facilities. And the conditions, whether it’s in a developed country or a less developed country, the conditions are awful.

>> Marcie Roth (Guest):
If we weren’t already quite clear just how bad congregate living is for disabled people and for disabled people in emergencies and disasters, the last period in which COVID has taken its toll, it is more clear than ever just how bad these facilities, these institutions are for disabled people and particularly disabled people of color and other multiply marginalized people, people who are black, brown, people who are indigenous, as well as people who are LGBTQ, as well as people who have experienced extreme poverty, women much more so than men. And the facts in all of this together paint a picture of a kind of discrimination and segregation and devaluing of humanity that has been ignored for far too long.

>> Nicholas Love (Host):
Sobering, very sobering that so many people do not understand how big of an impact this has. So, during a disaster, after disaster, what’s happening in these institutionalizations and this congregate settings? Talk to me about what happens during those time periods.

>> Marcie Roth (Guest):
Well, so there are a number of really troubling issues. I’ll talk about a couple of them. One in particular is that although here in the US we have a number of laws… I think we’ll talk more about those later. But we have a number of laws that should be protecting people in disasters from institutionalization, and yet the numbers of people who are moved into nursing facilities and other long-term care facilities during disasters is actually especially disturbing. It is not uncommon that someone could be taken from their home and bypassing an acute care facility, not being provided with support in an emergency shelter setting where other members of the community might be, but may be taken directly from their home and admitted to a nursing home, for example.

>> Marcie Roth (Guest):
And this is often because there is this perception that people cannot get their needs met in a disaster in any environment other than a medical environment. This is a medical model way of thinking about disability. So if someone needs personal assistance services, if they need an accessible bathroom, if they need a place to plug in their disability-related equipment or medical devices, if their medications or disability supplies are damaged or destroyed in the disaster, all of these, rather than the planning that it takes for the community to prepare for the whole community in a disaster, it is assumed in many places that there is no other place that can meet people’s needs and so they are directed straight from home or from an emergency room or from a hospital bed into a long-term care facility.

>> Marcie Roth (Guest):
When you couple this with a number of things that happen in disasters that provide flexibilities, that are… There are flexibilities in disasters that the federal government confers to the states that very significantly cross the line when it comes to the rights, the civil rights of people with disabilities, and yet this happens again and again and again. There are unfortunately far too many examples over the period of the pandemic in which this sort of use of the federal government’s waiving certain obligations, despite the fact that there should be no waivers in disasters, there are no waivers in disasters, huge numbers of people have been institutionalized, whether it’s directly because of COVID or whether it’s been because of a co-occurring disaster, a hurricane, a flood, a tornado, a wildfire.

>> Marcie Roth (Guest):
There’ve been a number of concurrent disasters over the past year and the institutionalization of disaster-impacted people with disabilities has been higher. And after the disaster, once people have been admitted to these long-term facilities, oftentimes, whether they get lost in the system as a primary problem or whether what happens is that person’s home and community-based services are disrupted, the supports that they need have been damaged, the people who might provide those supports are no longer available, their home may have been damaged and accessible housing is particularly difficult at all times, even more so in a disaster, their employment and their ability to maintain their livelihood, all of these are disrupted, the person is in a facility and they are never again moved back into the community that they were pulled out of in the middle of the disaster.

>> Nicholas Love (Host):
So it’s like an individual is pulled into these institutions and is kind of trapped. You mentioned a whole community approach to preparation, so what should be happening during disaster to make sure that we don’t lose these people into an institutional setting.

>> Marcie Roth (Guest):
So, the process of whole community planning is one that is far less complicated than many people think it to be. One of the most key pivotal elements of it is Nothing About Us Without US, including people with disabilities at every step of the way in planning for, throughout responding, in recovery, and in mitigating what might happen so that the whole community builds a kind of resilience that benefits not just some members of the community, but in fact the whole community. So whether it’s in that community planning and the exercises that communities hold in the US and in many places around the world, there are emergency exercises that are conducted on a regular basis.

>> Marcie Roth (Guest):
And these are great opportunities for disabled people to participate and for us to be able to pose real world challenges in a sort of no-fault environment. And yet, unfortunately, in that planning, so often, rather than including people with disabilities, they use stuffed animals or they have people, actors, pretend that they’re people with disabilities. They’ll hang a tag around people’s necks that says, “I am deaf.” But these are not adequate solutions to the planning and exercising process because you need real people with lived experience posing those challenges.

>> Marcie Roth (Guest):
Exercises are an ideal opportunity to break things. Exercises are not intended for us to prove just how great everything is. When we were kids and we were participating in fire drills in school and they timed everybody and how fast can we get everybody out of the building, we didn’t inject the real world challenges that might actually teach us in a no-fault environment how to protect the whole community in that setting. So in the planning, we need to be looking at the entire process, the alerts and warnings, building evacuation, multi-story buildings, how people get from one place to another, from a building to a place of safety. What happens when people with disabilities have acute medical needs?

>> Marcie Roth (Guest):
Most of us most of the time don’t have cute medical needs, but when we do, we still need accommodations just the same as when we’re not in the middle of a disaster. So planning for meeting those accommodations as well, and then throughout the entire disaster cycle, to make sure that in that planning that we’re thinking through all aspects of the built environment, all aspects of emergency and disaster programs and services, and the imperative for equally effective communication access. Information has to be accessible, to be actionable.

>> Marcie Roth (Guest):
In a disaster, we want to be sure that everybody has the information that they need in a way that they most need to receive it so that they can take personal protective measures, so that they can help their family, their neighborhood, their community. When everybody has the information that they need, the whole community benefits from that. So, those are some of the things that should be happening. In some places they are happening, or at least they’re starting to happen, but in far too many places, they’re not happening at all.

>> Nicholas Love (Host):
I mean, it sounds so simple; inclusion, communication, preparation. It seems like a simple process. You talked a lot about it, so how has the COVID pandemic exasperated the situation in the form of people with disabilities in congregate facilities, in the non-stop admission to these facilities, and the denial of the relocation when people request it?

>> Marcie Roth (Guest):
Let me begin by saying that when we’re talking about most facilities, over the period of the pandemic, there has been so much focus on what is reported as the disproportionate death of older people, the disproportionate death of “the vulnerable, the fragile, the frail, the elderly”, which are all just offensive descriptors to begin with. But these are virtually all people with disabilities. You don’t go to a nursing home because you’re old, you go to a nursing home because you have a disability and your community has failed to plan to accommodate you and your disability.

>> Marcie Roth (Guest):
Many, many older people live at home and in their community for their entire lives, so institutions are not an inevitable part of the aging process. Institutions are what happens when the community fails to adequately meet everybody’s physical, communication, and program accessibility needs. So, since the beginning of the pandemic, a longstanding problem of infection control in congregate settings became even more deadly. So we’ve had now close to 200,000 people who’ve died in nursing homes and other long-term care facilities. Virtually all of them are people with disabilities.

>> Marcie Roth (Guest):
And the failure to provide the supports and services that these individuals should have been entitled to in the most integrated setting appropriate to their needs, which should have been a non-congregate setting, instead, most people were denied the opportunity to be in a safer environment. We all know that COVID-19 has been an absolutely horrific pandemic. It’s been absolutely horrible. But the number of black and brown and indigenous people with disabilities who have died and even more so the numbers of people of color who have died in nursing homes has been… I have to use the term genocide.

>> Marcie Roth (Guest):
People with disabilities, especially multiply marginalized people with disabilities have died in such shockingly high numbers that I don’t think there is another term that could more appropriately be used to describe the genocide of hundreds of thousands of people, hundreds of thousands of our siblings in the US. This is true globally. And based on the Centers for Disease Control and Prevention and their numbers, they have talked about 94% of the population who’ve died from COVID, not just people in congregate facilities, but 94% of the people who’ve died from COVID had pre-existing conditions, and I’m making air quotes as I say this, have had comorbidities, and more air quotes.

>> Marcie Roth (Guest):
These are words, these are euphemisms that are used instead of disability. But if 94% of the deaths from COVID here in the US, going on 600,000 people, 200,000 of them in institutions, 600,000 of them altogether, we’re talking about 94% of these people had underlying conditions. These were people thus with disabilities and these were people who had rights, and in at least far too many cases were denied their basic human rights, civil rights, to receive the services and supports that they needed to keep them safe and to protect them from COVID-19. To take that one step farther then, that unbelievable loss of life in these facilities… Well, let me back up for a minute.

>> Marcie Roth (Guest):
I talked earlier about how there are not supposed to be waivers of federal civil rights protections in disasters, in public health emergencies, and declared disasters. Despite the fact that there are not any waivers to those protections and despite the fact that the Americans with disabilities Act and the Olmstead decision that came from the Supreme Court as a result of the challenge to the Americans with Disabilities Act, there have been waivers that have allowed people to be moved from hospital beds into long-term care beds, not because there was a need for that individual to receive services in that long-term care bed, but because the hospitals needed the acute care beds.

>> Marcie Roth (Guest)
So while we’ve heard a lot of talk about alternate care settings, most of these alternate care settings were wings of nursing homes or congregate care facilities, long-term care facilities that were repurposed to move people out of acute care beds to make room for people who needed those acute care beds. As a result of the fact that people are allowed by the federal government despite those protections to be moved into these facilities, and added to that the extreme loss of life in those facilities made for a really lethal combination because those nursing home beds when left empty are financially a problem for the owners of those facilities.

>> Marcie Roth (Guest):
And many of those facilities are for-profit companies and leaving those beds empty is perceived by them to be an unacceptable status. So rather than focusing on safety as the absolute, hard stop, number one priority, there are many examples of where the priority was in filling those beds. During the pandemic, people with COVID and people who need a rehabilitation bed, not even because of COVID, those are very lucrative. Medicare and Medicaid pays way better for those folks than they do for long-term poverty rates for people with disabilities. So what then came as a result of this is that you had many, many people, either those who had COVID and were moved out of the acute care beds and into these long-term facility beds bringing COVID into the facility despite all the assurances that, no, they were being kept separate.


>> Marcie Roth (Guest):
That has not been the case. Or people who were being admitted to the long-term care facility who didn’t have COVID, who came from home, went to the hospital for some other reason, and were then transferred for post-hip replacement to these facilities and they were then admitted to a facility where COVID was rampant. As a result, even now with the successful vaccination of so many people in long-term care facilities, despite all of that, less than 50% of staff in those facilities have opted to be vaccinated, which means that those folks who were fortunate enough not to get sick before are now still at risk of getting COVID.

>> Marcie Roth (Guest):
The vaccine does not prevent COVID, it simply prevents the disproportionate impact of COVID, which is still not going to be… We all have high hopes that the impact of COVID for people who’ve been vaccinated will be less, there’ll be less hospitalization, less death. I have yet to hear anyone say that there won’t be any impact from COVID. And so again, people with disabilities are being discarded, erased, our lives are being so devalued by this constant churn. I’ve heard that over 100,000 people have been admitted to these facilities since the 1st of January. 100,000 people. It is extremely troubling.

>> Marcie Roth (Guest):
Combined with that is the very unfortunate circumstances that efforts have been made across the country, WID has been very involved in attempting to use the federal funding that is available through the Federal Emergency Management Agency, their public assistance category B, Emergency Protective Measures funding, to enable independent living centers and other disability-led organizations to assist people with disabilities who want to leave those congregate facilities. Those FEMA and the states have not allowed the use of those funds for this purpose. In Philadelphia, there were 20 people who had wanted to be a part of the transition out of those facilities and into a non-congregate setting earlier this year.

>> Marcie Roth (Guest):
While folks were arguing over whether or not those federal funds could be used for this purpose, all 20 of those people died from COVID. It is again a genocide of people with disabilities. And to this day, as we meet for this podcast, there is still no resolution in the use of those federal funds, which are being used for non-congregate housing for other people. They are not allowing for the use of these funds for people in congregate facilities because people are not considered to be “experiencing homelessness” if they’re in a facility, even this sort of facility. So, sure you have more questions.

>> Nicholas Love (Host):
You talked about the ADA and Olmstead. Can you share a little bit about how are these laws there to protect people with disabilities?

>> Marcie Roth (Guest):
The Americans with Disabilities Act and the challenge to the Americans with Disabilities Act that resulted in the Olmstead decision very clearly say that people with disabilities have a right to be served in the most integrated setting appropriate to their needs. The Department of Justice has gone on and very clearly stated that in almost every situation in a disaster, as well as not in a disaster, but in a disaster, a nursing home should never be the assumed solution. In fact, the Department of Justice back in 2007 in their ADA toolkit talked about the fact that it almost never should someone be sent to a nursing home rather than serving them in the community in utilizing the same disaster services that everybody else should be able to benefit from.

>> Marcie Roth (Guest):
The Rehab Act is now almost 50 years old and that law which… The Americans with Disabilities Act is 30 years old, the Rehabilitation Act is almost 50 years old, and that law speaks very specifically to the obligation that the federal government has whether they are conducting activities, meaning that the federal government is directly providing disaster services or whether they are funding the services of another entity, and so whether it is the federal government utilizing federal funds or whether it is the use of federal funds by those who are receiving federal financial assistance.

>> Marcie Roth (Guest):
So that could be a state government, that could be a local government, that could be a private entity, any use of federal funds requires non-discrimination, equal access, physical program, equally effective communication access, without exception. There are no waivers to that. So when we find ourselves in a situation where none of these protections are being monitored and enforced, and very clearly the numbers of people who should have had those protections based on their disability, given the fact that there are no waivers to those protections in a disaster as very clearly stated by the Department of Justice, Department of Health and Human Services, Department of Homeland Security, and in a disaster, in a… Yet again, this is in the US.

>> Marcie Roth (Guest):
In a federally declared disaster and in a public health emergency, both, there are obligations that the federal government cannot give away just because they’ve given money to someone else. So once there’s been a federal disaster declared in addition those disability civil rights laws and in addition to the overarching civil rights laws, the Stafford Act, which is the law that directs all emergency and disaster-related federal actions, calls for non-discrimination. So we very clearly are seeing a significant failure in the monitoring and enforcement of these laws. Globally, many countries have their own disability rights, laws.
Marcie Roth (Guest):

And in almost every member state of the United Nations, there has been ratification of the Convention on the Rights of Persons with Disabilities, the CRPF. And those human rights of people with disabilities include in many of the articles that people with disabilities have the human right to be free from institutionalization, to be free from being the very circumstances under which we are seeing people being held in congregate, dangerous settings. Finally, it is of the utmost importance that we move beyond these as disability rights issues, these are disability justice issues.

>> Marcie Roth (Guest):
We need to move beyond the trying to make laws work when it comes to people with disabilities, we need to instead be working for a just world in which people with disabilities don’t have to fight for rights or look to the monitoring and enforcement of laws, but rather that we as disabled people are as worthy of every opportunity as any other human being and that the environment, the world that we live in is no longer one in which we have to try and force our way into systems and laws and programs that were not designed to work for us.

>> Nicholas Love (Host):
Thank you, Marcie. I couldn’t agree more with that statement. We shouldn’t have to fight just to be part of our world and we shouldn’t be ignored simply because there’s a disaster. You’ve talked about what’s happening in other countries, share a little bit more about that. What’s happening in other countries?

>> Marcie Roth (Guest):
Yeah. WID has had the opportunity over the past couple of years to be at more and more tables where Nothing About Us Without Us has actually included WID and our voices as a disability-led global rights organization, an organization that is committed to justice for 1.3 billion people with disabilities. We have been very active in both United Nations initiatives around humanitarian action and persons with disabilities. We are excited to be leading efforts to bring Disabled Persons Organizations, DPOs, Organizations of Persons with Disabilities, they’re sometimes called OPDs, and human rights community together.

>> Marcie Roth (Guest):
One of the things that WID has been very active in the past, not quite a year, in July of 2020, after recognizing there was a very significant gap in the resources made available to disability-led organizations in disasters by humanitarian funders, corporations, foundations, and others, we launched the Global Alliance for Disaster Resource Acceleration and have been working with our corporate and foundation partners and allies to develop systems and processes that match those humanitarian funders directly with disabled persons organizations that have been impacted by disasters to support those organizations to serve the people in their community.

>> Marcie Roth (Guest):
Not from a charity perspective, not from an approach that directs those resources in a way that doesn’t support community leadership or steps in front of community leaders, the Global Alliance for Disaster Resource Acceleration intends to support the leadership of the most impacted people with disability lived experience and the lived experience of that community and giving them the resources that they identify that they need in order for them to serve their community, both disabled people and others who are impacted by disasters. As of this point in the journey, the Global Alliance for Disaster Resource Acceleration, also known as GADRA, has reached folks who are wanting to hear more about what these issues are and how they may get involved.

>> Marcie Roth (Guest):
We’ve reached people in 69 countries, six continents. And as we get closer to the end of our first year, we are very excited about our ability to make those matches and to bring together those humanitarian actors with those local disability-led organizations to make the kind of improvements and to provide a kind of resources and support that do improve outcomes.

>> Nicholas Love (Host):
That’s absolutely wonderful. It’s great what WID is doing to be part of that solution. As we’re closing this down, is there anything specifically, Marcie, that you want to talk about, share that you haven’t shared yet about this topic?

>> Marcie Roth (Guest):
I think the one thing I want to say is there is lots of discussion underway about building back better after COVID. I would like to suggest that rather than building back better, we need to be building forward better. What we were doing didn’t work. Anybody who’s not sure about that probably hasn’t been paying very close attention. If we really want to be better, we need to be building forward, we need to be building in ways in which disabled people are… Our knowledge, our lived experience, and particularly the lived experience of those of us who have been most significantly impacted needs to be what guides us to build forward better. And we at WID are learning and growing in our ability to center our work in ways that really do yield that kind of building for the future.


>> Nicholas Love (Host):
Thank you, Marcie. This has been a very interesting and sobering discussion. I really appreciate it. Thank you for your time, your leadership, your commitment to the 1.3 billion people globally with disabilities. Thank you for everybody who’s tuned in for the debut episode of What’s Up WID. We’re excited to have you join us for our next episode in two weeks. In the words of one of our founders, Ed Roberts, “We need to get out there and change the old attitudes,” so, as Marcie said, we can build forward better. Thank you.

>> Marcie Roth (Guest):
Thank you very much, Nicholas. Really appreciative of your partnership. Let’s lead on together, make some good trouble.

>> Nicholas Love (Host):
Yes, yes.


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