The COVID-19 Pandemic Makes it Clear: It’s Time to Permanently Close Institutions

A blurred photo of an institution corridor.

The following post is part of our series on perspectives from disabled and chronically ill people regarding COVID-19. Content note: institutionalization

I was born into what is called the “ADA Generation.” For my entire life, the Americans with Disabilities Act (ADA) has been the law of the land, protecting the rights of people with disabilities. One of those rights is the right to live in the community instead of being forced to live in institutions. Some people might think this means institutions are a thing of the past for people with disabilities. As a survivor of institutions, I know that institutions are still alive and well today, and millions of people with disabilities in the U.S. are still warehoused within their walls. And the people living and working in institutions, alongside survivors of institutions who now live in the community, have been especially impacted by the ongoing COVID-19 crisis. This pandemic has shown that, even though it’s been 30 years since the passage of the ADA, institutions are still just as harmful to people with disabilities today.

Institutions are a perfect environment for the spread of a disease like COVID-19. The amount of staff in most institutions is not sufficient for each person living there to receive individual care. I know from my experience in institutions that none of us were allowed to be alone for an extended period of time, and most of the day was spent in one room as a large group. These conditions are commonplace for many institutions, making it impossible to self-isolate.

Last year, regular inspections of nursing homes found that over half were cited for failures to control infections, such as the flu and pneumonia, which paints a grim picture for their ability to control the spread of a highly infectious disease like the coronavirus. On top of this, some institutions are not supplying staff with personal protective equipment (PPE), like masks and gloves. That means that staff may be spreading COVID-19 between the people they work with, even if individuals are able to stay mostly within their own rooms.

We know from the numbers released so far that COVID-19 has hit institutions especially hard, putting what is already a medically vulnerable population even further at risk. Data tracked by the Autistic Self Advocacy Network found that over 60,000 cases of COVID-19 in U.S. institutions have been confirmed so far, and of those cases, over 10,000 have died. About 63,000 people have died in the U.S. due to COVID-19 – which means that about 1 in 6 COVID-related deaths came from institutions.

On top of these numbers, individual cases are pouring in of staff reporting COVID-19 outbreaks within their workplaces and detailing unsafe working conditions that might be contributing to these outbreaks. Staff members at institutions are often paid barely above minimum wage, and some also have health conditions that put them in a high-risk category should they contract COVID-19. They may feel it necessary to quit their jobs rather than keep working in such a dangerous environment. The resulting staff shortages put people living in institutions in even more danger.

Institutions isolate people with disabilities from the rest of society, which is one reason why many people might not even know that institutions still exist. That isolation is also another reason institutions can be so dangerous: if people with disabilities get neglected or abused in institutions, there may be no way for others to find out. Right now, some institutions are refusing to let anyone know details about COVID-19 outbreaks, such as how many people are affected or what safety measures are being put in place – not even the family members of the people with disabilities living there.

While the Centers for Medicare & Medicaid Services mandated that nursing homes must share data about how many people have contracted COVID-19, this mandate doesn’t apply to all institutions. Institutions for people with intellectual and developmental disabilities, psychiatric institutions, and small institutions like group homes can still choose not to share this information. Outside of what is required by the federal government, each state has widely different protocols about which institutions must share data on COVID-19, as well as what data specifically must be shared. That means that we still don’t have the full picture as to how many individuals in institutions have been impacted by COVID-19. What’s more, inspections of nursing homes have been halted due to the coronavirus – during a time when this information is needed most.

Many institutions are also prohibiting family member visits as the pandemic continues, leaving families in the dark about how their loved ones are doing, contributing even more anxiety to what is already a high-stress situation. While this may seem on the surface to be an appropriate safety measure, for some people with disabilities who rely on their families to help them communicate, this means they are left unable to communicate their needs during this time of crisis. Other people with disabilities need in-person emotional support, which is crucial to help manage the distress that COVID-19 has caused.

Even as it becomes clear how dangerous institutions are for people with disabilities during the COVID-19 crisis, some people with disabilities living in the community fear they will be forced into institutions. Shortages and disruptions to the supply chain caused by COVID-19 mean that some people with disabilities are struggling to get the medical supplies and equipment they need to stay healthy and in their own homes. In addition, many people with disabilities who live in the community rely on support staff to help with the activities of daily life, like cooking and eating, transferring in and out of a wheelchair, or traveling to doctor’s appointments. But because support staff may need to self-isolate, or don’t want to risk transmitting COVID-19 because they can’t obtain PPE, some people with disabilities are experiencing a staffing shortage. If people with disabilities can’t find replacement staff, they may be unable to live independently.

Noah Ohashi is one disabled person facing this problem.  An international student in college in Chicago, most of his support staff were fellow college students. “Because I moved from Japan, I don’t have family, so my only way to stay independent is from the help of PAs (personal care attendants)…Because of the stay-at-home order, my PAs went back home,” he told me. Even though a few weeks have passed since then, Ohashi is still struggling to get new PAs. The lack of support staff also affects his access to health care. “Because I have multiple underlying health conditions, I need to visit the hospital and get checked. But now I can’t access it, so my health is getting worse.”

“I am really worried that I might be sent to an institution because of this situation,” he continued. Ohashi also expressed fear of seeking treatment at the emergency room (ER) if he were to get sick from COVID-19, or from other health issues resulting from a lack of support staff. He worried that if he were to visit the ER, he might not be allowed to go back into the community, and would be pressured to go to an institution instead.

If people with disabilities lose access to the resources that help us live in the community, including supports and supplies, an institution may become the only option for us to receive the services we need to survive. But many survivors of institutions, like Ohashi and I, say we would rather be dead than be forced back into an institution. As we face that possibility, this pandemic is proving to be a reminder for why living in the community is so important. We know from the data and personal accounts that we are safer, healthier, and happier when we live in the community. “Congregate settings (like institutions) are not an option for me, and are dangerous for everybody,” added Ohashi.

Living in the community also gives us the freedom to control our lives. Losing that freedom is a traumatic experience, and in some ways, the lifestyle changes that COVID-19 has made necessary remind me of the trauma of my time in institutions. Following shelter-in-place protocols keeps me isolated from others and restricts where I can go and what I can do, a less severe form of the institutional rules that were forced upon me. The sense of hopelessness and uncertainty regarding when life will return to normal is similar to the time I spent wondering if I would ever be able to live in the community again. For many people, the process of quarantining or sheltering-in-place will be the closest experience they will get to living in an institution. The amount of hardship that people are facing from these temporary circumstances should make it clear that nobody should live in an institution.

For all the questions that COVID-19 has brought up about our society and life going forward, there is one thing that is certain: it’s time to make sure institutions are closed down for good. Right now, our government should be focusing on securing the funding to move people out of institutions and into the community and ensuring that those who work to support people with disabilities get paid fair wages and can access PPE. Now is the time to help all people with disabilities live in the community, rather than using COVID-19 as an excuse to force people back into institutions. As we approach the 30th anniversary of the ADA, let’s not forget that we still have work to do to affirm our right to live in the community. Securing these rights is more important now than ever before.

Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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I’m Tired of Being Accused of “Faking” My Need for a Service Animal

Brown and black dog in an orange vest that says "service dog."

This blog post was re-published on HuffPost.

Recently, while on a date, the subject of service animals came up. My date spoke of a female coworker of theirs who would occasionally bring a service dog to work. They expressed their disbelief about their coworker’s disability – an anxiety disorder – because she “seemed fine” most of the time, and didn’t always bring her service dog to work. “If she can come in some days without her dog, she must not really need it,” they reasoned.

I quickly changed the subject, too nervous to mention my own service dog, who I had left home that evening.

As a person with multiple invisible disabilities (including autism, PTSD, and anxiety), having a service dog has made a huge difference in my life. My service dog helps me get oriented to new spaces and navigate crowds and places with loud noise, and also knows how to respond if I have a flashback, meltdown, or anxiety attack in public. Having my service dog with me can make the difference between being unable to leave my apartment and going out to do daily life activities. Having the companionship and stability of my service dog also affects how much I can get done in a day; a task that may take all my mental energy to accomplish on my own, leaving me unable to do any other tasks the rest of the day, becomes much more manageable with my dog at my side.

There are times when I don’t take my service dog with me. Some days I will wake up feeling well enough to go through my standard routine (work, errands, etc.) by myself. Other times, I know I will have a human companion with me to help me through the day, who can fill a similar role as my dog.

But sometimes, the reason I don’t bring my service dog out with me is that I fear the reactions of others. Because I can “pass” as a non-disabled person, when my service dog accompanies me, it invites insensitive questions about my disability status from strangers. I’ve encountered many individuals who have the misconception that service dogs are only for people with noticeable physical disabilities, like blindness or mobility impairments. And while service dogs specifically for autism are becoming more common, organizations that train these dogs only market these services for autistic children, perpetuating the idea that autistic adults don’t need service dogs.

When faced with questions about my disabilities or the purpose of my service dog, there is always a risk that I will be accused of “faking” my need for a service dog. These accusations alone can be enough to send me into a meltdown on a bad day. It is a real option I have to weigh: do I try to go out on my own, knowing that it will take me a tremendous amount of effort without my service dog, or do I bring my service dog and risk the ignorant comments of strangers making my mental state even worse?

For many years, I internalized the idea that I should try my hardest to not “look disabled”. This idea caused me a great deal of mental anguish and lowered my self-esteem. I felt incompetent for not being able to do the same activities that others seemed to accomplish so easily. Only after I began to embrace my disabled identity was I able to look into options that could improve my quality of life. A service dog was one of these options, and having mine has given me a level of independence I’ve never had before.

I’ll never regret making the decision to get a service dog, but I also know that I will continue to struggle to validate my needs and identity as a disabled person in the face of ignorance surrounding service dogs for invisible disabilities. I can only hope that as I face the world with my dog at my side, the rest of the world begins to understand and accept that service dogs can be part of the lives of all individuals with disabilities, regardless of how that person appears.

Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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The Public Health Statistic that Fails Disabled People

Vital signs in the shape of a heart

I first encountered the term “Disability-Adjusted Life Years,” or DALYs, during my second year of studying public health in college, and as a disabled person, the concept is concerning to me. DALYs are a measure used to calculate the amount of healthy years of life lost to disease or disability. They account for the difference between someone who dies a premature death due to disease or disability in comparison to the lifespan of an average, non-disabled person. In addition, this measure also assigns each type of disability a number that indicates how a disability is perceived to negatively impact health and quality of life, and equates this number as additional years of life “lost.” In this way, disabled people are viewed as only living a fraction of a healthy life.

I do not feel that I am less “healthy” than any of my non-disabled peers, nor do I feel like my quality of life is suffering because I am disabled. With the right supports, disabled people are able to live lives just as fulfilling as those of non-disabled people. In addition, by conflating being disabled with being unhealthy, public health initiatives spend more time and money focusing on how to get rid of disability, rather than supporting the health of people living with disabilities.

I would not be the same person without my disability, and would rather energy be spent supporting my needs instead of demonizing my condition.

However, when I shared these ideas with my class, they didn’t seem to understand my perspective. As I progressed in my studies, disability continued to be discussed solely as something to be combated by public health measures, or as something that negatively impacted quality of life. Not only are these viewpoints misguided, but they are actively harmful to disabled people. When disabled people are assumed to be inherently unhealthy, it becomes easy to ignore health problems in disabled people that could be addressed. It also allows medical practitioners to stigmatize disability, leading to inadequate health care for the disabled community.

There are many factors that may affect the health of disabled people that aren’t directly related to their disability.

For instance, a disproportionate amount of disabled people live in poverty due to education and employment programs that are not inclusive, as well as social welfare programs that place income limits on disabled people.

One of the first things I learned in my studies is that “wealth equals health.” That is, people with less money are more likely to have poorer health outcomes due to difficulties accessing life necessities and comprehensive healthcare. Because of the bias of public health research, the health problems of low-income people with disabilities may not be thoroughly examined because disability is assumed to be the source of their problems, rather than poverty.

The beliefs espoused in public health research also affect how health care is practiced. One instance of this relates to sexual health, as noted in the National Council on Disability’s report on “The Current State of Health Care for People with Disabilities.” It is still commonly assumed that disabled people can’t be sexually active, so disabled people are generally not offered sexual and reproductive health services. On the other hand, when a disability is not readily apparent, a doctor may invalidate a patient’s symptoms as “fake” and withhold necessary care. Both of these perspectives stem from the belief that “disability” equals “unhealthy,” and lead to dangerous practices like organ transplant discrimination against people with disabilities, forced treatment of people with mental health conditions, and “wellness” programs that place extra cost burdens on disabled employees for healthcare. These factors can cause disabled people to choose to avoid healthcare settings, leading to even worse health outcomes.

In a way, the conversation surrounding disability and health has created its own self-fulfilling prophecy, in which disabled people slip through the cracks of the healthcare system not because of their disability, but because of the judgments placed upon them by the medical community.

If, like in my classroom, students continue to be taught that disability results in lower quality of life, then this cycle will continue. I believe breaking the cycle requires a shift in public health research, with emphasis placed not on creating a world without disability, but rather on creating a world where disability doesn’t translate to a lower quality of life. Changing this perspective will positively impact healthcare practices, and help make sure that all places, especially doctors’ offices and hospitals, are accessible and inclusive to disabled people.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.