In Part 1 of a new series on Home and Community Based Services (HCBS), we explore the history of institutionalization in the US and its lasting impacts on the health care system. Stay tuned for Part 2, where we’ll discuss the modern HCBS system and what’s keeping so many people from accessing it.
Here’s where I got my shirt! Not sponsored, I just love shouting out disabled artists 🙂 https://www.teepublic.com/user/dissentclothing
Transcript
Hello and welcome back to the Not Dead Yet vlog! My name is Jules Good, I use they/them pronouns, and I’m the Assistant Director and Policy Analyst at Not Dead Yet. [VISUAL DESCRIPTION].
Today we’re talking about one of the most important issues facing the disabled community right now: access to long term services and supports, or LTSS for short. More specifically, we’re going to talk about the importance and availability of Home and Community Based Services, or HCBS. HCBS are what allow disabled people to live outside of institutions by providing us with support for daily living. But because of severely underfunded programs, home care provider shortages, systemic inequities, and needlessly complex processes, hundreds of thousands of disabled Americans are unable to access some or all of the HCBS they need. An estimated 655,000 Americans are waiting for care. This video will be part of a series on HCBS.
Today, we’re going to talk about what HCBS is and why it is so important.
First, a little history. HCBS has only been available as a care option under state Medicaid and Medicare programs since 1983, and was only implemented by waiver until 2005 when it became a formal Medicaid State Plan option. It is still mostly provided via waiver, which means that HCBS is administered as an exception rather than a rule. This is a fundamental barrier to access. Even though HCBS is widely considered to be far better for the health of disabled people than institutionalization, we constantly have to defend ourselves from being institutionalized. In other words, institutionalization is the default, even though it’s the worst option for the vast majority of disabled people.
And that’s really quite ridiculous when you think about it. Imagine if you were allergic to peanuts and the only food available in your work cafeteria was a pb&j. In order to get anything else or even bring your own lunch, you have to fill out a million forms, consult several agencies, and wait months or even years for someone to decide whether or not you can eat something different for lunch. That’s a really inefficient system! If there were more options in the cafeteria in the first place, or if you were allowed to bring lunch from home, this wouldn’t be a problem! Institutionalization is like that pb&j. It’s what our policies were designed to fund, and now getting funding and structural support for anything else is an uphill battle. We’ll talk more about barriers to accessing HCBS in the next video in this series, but understanding this inherent flaw in how HCBS is set up is crucial to understanding what it is.
So what services are provided through HCBS? They’re typically broken down into two categories: health services and human services. Not all of these services are available in every state or even in different places within the same state, but these examples will give you an idea of the types of support HCBS can theoretically provide. Health services are assistance provided for hygiene, medical safety, and basic care. These include things like medication administration, dietary management, wound care, occupational/speech/physical therapy, and, for people expected to die within a certain amount of time, hospice care. You know, really superfluous, unimportant stuff (sarcasm).
Human services help with things like personal care, such as dressing and bathing, transportation to appointments and other activities, cleaning, meal delivery, and financial management. By providing these services in a person’s home, we keep them from having to live in a nursing home or other type of long-term care facility. This means, ideally, that they can maintain their connections to their family and community and have more independence to do the things they want to do. It’s important to remember that while we advocate for HCBS, most HCBS programs are not perfect. The system has a lot of problems and there have been far too many stories of abuse, neglect, and insufficient care. But the alternative of institutionalization as a default for disabled people is far, far worse.
The US has an insidious and often under-discussed history of institutionalization. We’ll start in the 19th century, where poor disabled people were relegated to poorhouses, or public congregate housing. They basically lived in stalls which were appallingly dirty and rife with disease. This is where disabled people went when they didn’t have a wealthy family to keep them locked behind closed doors. There was a popular practice in the early 19th century called “warning out and passing on”, where someone in a town could look at a disabled or otherwise “deviant” person and tell them to leave. If they didn’t, they’d have the disabled person forcibly loaded onto a cart and dropped off in the next town over. Disabled people were treated like animals, but even worse, because there was no presumption of innocence– we were considered impure and morally corrupt because that was the only way people devoid of scientific reasoning could explain away our conditions.
By the mid-19th century, bigger warehouses for disabled people came in the form of asylums, which were like poorhouses but with staff supervision. One of the most influential figures in making the shift from poorhouses to public institutions was Dorothea Dix. Most of us learned about Dix as a champion for the mentally ill who documented the injustices she saw in prisons and poorhouses across the country and reported them to Congress to inspire revolutionary reform. And while in some ways her work did improve conditions for disabled people by forcing policymakers to confront our humanity, it was still rooted in the idea that disabled people needed to be kept mostly separate from the rest of society.
Over in Germany and France, influential educators like Johann Jakob Guggenbühl and Edouard Seguin started training schools. These schools were often in remote places, like Guggenbuhl’s Abdenberg school atop a 4,000 ft peak, and were meant to cure children of their disabilities through exercise and education. The idea behind a lot of this was that disabilities, particularly cognitive disabilities, were the result of a weak central nervous system, and that if you exercise enough and try really really hard you can overcome them. I’m so glad that we as a society have moved past that attitude (sarcasm).
These European notions of “humane treatment” made their way to the US, which is how we got institutions like the Perkins School for the Blind directed by Dr. Samuel Gridley Howe that aimed to teach disabled people skills to integrate with the rest of society. Training schools in the US had a mostly educational focus but still relied on the fundamental idea that disabled people could be treated, changed, and ultimately cured.
Unfortunately, “treatment” was an incredibly loose term. Sidenote: If you want to learn about the nitty gritty of this, I highly recommend reading Mad in America by Robert Whitaker, which goes through the history of mental healthcare in Western society. Once children became adults and left the training schools, there was nowhere for them to go. Their hometowns still didn’t really want them, and with the Civil War raging on by the latter half of the 19th century, no one was really invested in caring for the people whom society considered to be a bigger burden in already burdensome times. As a result, disabled people ended up back in poorhouses and jails, which was the very problem the training schools were trying to solve. It was clear that adults with disabilities needed support, too, not just the kids. Unfortunately, the “solution” we came up with was to warehouse disabled people in custodial institutions. Education and community integration was no longer the priority– now, the goal was to keep disabled people away from society and exploit them for cheap labor. Institutions received public funding despite their disgusting conditions by arguing that providing disabled people with shelter and relative “safety” was a service to society. Dr. Howe from the Perkins School was one of the first high-profile people to recognize the dangers of this. In an address he made at the groundbreaking of a new institution that he tried really hard to stop from being built, he said:
“As it is with individuals, so it is with communities; and society, moved by pity for some special form of suffering, hastens to build up establishments which sometimes increase the very evil which it wishes to lessen…There are several such already in this country; and unless we take heed there will be many more. Our people have rather a passion for public institutions, and when their attention is attracted to any suffering class, they make haste to organize one for its benefit.…But instead of first carefully inquiring whether an institution is absolutely necessary, that is, whether there is no more natural and effectual manner of relieving the class; and afterwards, taking care that no vicious principle be incorporated into the establishment; they hastily build a great showy building, and father within its walls a crowd of persons of like conditioned infirmity; and organize as community where everything goes by clock-work and steam.”
Translation: Institutions can do more harm than good, even if they don’t mean to. There might be better ways to help disabled people, but we never really explore them because we’re so jazzed about building more flashy institutions where we can exploit disabled people for labor.
So by this point we have a ton of money being pumped into these Shutter Island-esque asylums while families are begging for support from the government to provide for their disabled loved ones at home. Again, I’m so very glad we don’t have that problem now (sarcasm). Disabled people who were still living outside of these facilities were scapegoated for pretty much everything going wrong in society, which is why eugenics became so much more mainstream by the early 20th century. Many immigrants were turned away from Ellis Island for being disabled, and Black and Indigenous people living in the US continued to be segregated and harmed because they were supposedly naturally and incurably intellectually inferior. Well into the 1970s, the Black Panther Party considered allyship with institutionalized people a priority, and fought against the psychiatric abuse of incarcerated people in addition to advocating for transparency about the dismal conditions in many of California’s nursing homes. Their praxis of collective liberation necessitated the freedom of their most vulnerable community members, and they understood racial and disability justice to be tied.
The dominant narrative around disabled people throughout most of the 20th century was that we were dangers to ourselves and society at large, and therefore any measures used to keep us away from society were acceptable regardless of the harm they caused– we’re good Christians after all, we can’t just kill them (sarcasm)! A dangerous mix of pity, fear, and the assumption that disabled people couldn’t possibly know what is best for us paved the way for the systemic inequities we continued to face from this point on– forced sterilization, disproportionate rates of incarceration, filicide, and, yes, assisted suicide and euthanasia– but we’ll talk about that one in depth a little later.
This is a very basic overview of a long and complex stretch of history, and there’s a lot I left out. I highly recommend scrolling through the Minnesota Council on Developmental Disabilities’ excellent web project entitled “Parallels in Time: A History of Developmental Disabilities” if you’re interested in a more complete timeline, as well as the book Black Disability Politics by Sami Schalk. We also can’t talk about this history without mentioning the Olmstead decision, which was a monumental case in which “the Supreme Court decided that states must provide long-term support services (LTSS) in the community in certain instances in order to be compliant with the Americans with Disabilities Act mandate that public entities administer programs in the most integrated setting appropriate to the needs of qualified individuals. The Department of Justice and several Circuit Courts expanded the Olmstead decision to apply to individuals who are at risk of being institutionalized, but are not currently living in nursing facilities.” Lois Curtis, a Black disabled woman, was the lead plaintiff in this case. To give you an idea of how recent all of this is: she passed away just last year at the age of 55.
My point in going through this history is to show how the segregation and mistreatment of disabled people has been normalized in society to the point that receiving services in our own homes and communities instead of in institutions is seen as a privilege rather than a right.
Now you might be thinking– “modern institutionalization surely can’t be that bad, right? It’s not like people are still getting electroshocked and lobotomized in state funded institutions anymore. What’s so bad about a disabled person living in a place where healthcare is theoretically always available to them?” Well, while the ice picks have defrosted and the ball gags stored away for a few decades now, there is still an ugly reality of abuse, neglect, and subpar care in modern institutions– in fact, the Judge Rotenberg Center in Massachusetts does indeed still use electroshock “therapy” on some residents.
The COVID-19 pandemic has been an unfortunate example of the problems with institutional living. According to the Kaiser Family Foundation, as of 2022 there were 1,157,714 people living in certified nursing facilities in the US. This includes people in skilled nursing facilities for shorter term rehabilitation, as well as long-term residents. Even though this is just 0.3% of the population, COVID deaths in nursing homes account for 23% of all COVID deaths in the US. That’s an absurd proportion. And even if you account for age, 19% of COVID deaths among people 65 and older were people living in nursing homes. There are a multitude of factors that contribute to this, ranging from subpar vaccination rates among nursing home staff and residents at the beginning of the pandemic to hospitals discharging COVID-positive patients to nursing homes because they had nowhere else to put them. I could make a whole other video just about COVID in congregate care settings, but my point for now is this: these facilities are meant to be the place people go when they can’t receive appropriate medical care or LTSS at home. They are supposed to be safe. In an unprecedented global pandemic, you would think nursing homes would be the most cautious, clean, protected places a person could go– but this couldn’t be further from the truth. They faced staffing shortages and periods where they ran out of PPE. They received limited guidance on and enforcement of testing protocols. Instead of tightening restrictions and precautions, the Center for Medicare and Medicaid Services, which oversees certified nursing facilities, waived many resident protections and barred advocates and evaluators from visiting.
Meanwhile, the director of the CDC, Rochelle Walensky, was seemingly fine with the fact that the most vulnerable people were the ones with the highest mortality rates, saying “The overwhelming number of deaths — over 75 percent — occurred in people who had at least four comorbidities, so really these are people who were unwell to begin with — and, yes, really encouraging news in the context of Omicron.” The separation of disabled people from society at large created a convenient way for everyone to ignore the tragedy of our disproportionately many deaths; so many in our community were out of sight and out of mind. And no matter how nice a facility claims to be, how many “services” it provides, how much it claims to value the “dignity and autonomy” of its residents, institutions make us more vulnerable by virtue of separating us from everyone else. And THAT is why home and community based services and supports are so, so crucial. We need to be part of our communities, to be seen as fully human, to have the chance to not only survive but also participate in all of the beautiful things that make life worth living. HCBS, when it’s working the way it’s supposed to, gives us that chance.
That’s where we’ll stop for part one of this series. Next time, we’ll talk more specifically about current barriers to accessing HCBS in the US, as well as the dangers that assisted suicide policies pose in a system where people can’t get the care they need. Thanks for watching. If you’d like to learn more about us and the work we do, please visit www.notdeadyet.org . See you next time!
