The following is a response to David Axelrod’s op-ed in the New York Times entitled “When it comes to people like my daughter, one size does not fit all.” Image Credit: Disabled and Here.
The Alliance for Citizen Directed Supports is deeply concerned with Mr. Axelrod’s position supporting unnecessary and harmful institutionalization of citizens with disabilities in the United States. We, the Alliance, were founded in response to a dangerous resurgence of large, segregated settings for people with intellectual and developmental disabilities and rhetoric such as Mr. Axelrod’s supporting such settings. The Board of The Alliance is made up of a diverse body of professionals and disabled people representing diverse racial, ethnic, and cultural communities. Some of our disabled members have experienced segregation, including residing in large institutions. Our large, shared knowledge and experience base informs our opposition to Mr.Axelrod’s position.
While we respect David Axelrod as a person, father, writer, and scholar, we found his Op-ed in the New York Times deeply troubling, misleading, and harmful to many disabled people in the United States. We acknowledge that as President Obama’s chief of staff, Mr.Axelrod contributed to a major victory for citizens with disabilities – the passage of Rosa’s Law, which ended the usage of the “r” word from federal health, education and labor policy and replaced them with people first language. However, his New York Times piece, which promotes large, congregate settings, has the potential to “turn back the clock” on disability rights and justice.
We write this in the hopes of explaining how our dedication to improvement to, expansion of, and support for self-directed care provided in one’s home and community is a positive step forward. Our commitment to it is not based on unexamined “dogma,” as Mr. Axelrod states, but based on the dignity and justice disabled advocates are demanding for their own lives, and rooted in our shared humanity.
Moving Towards Acceptance and Inclusion
We make no presumptions of Mr. Axelrod except for one that is likely shared by many parents. Our children are deserving of all the wonders the world has to offer and yet the world with its ugliness and violence is not deserving of our children. We do firmly believe that the path forward is not to cloister or segregate people based on one core element of identity, disability, to keep them “safe” from the world, but to help make the world to be better, kinder, and more able both to serve and receive the gifts and talents of disabled children. That can only come from meaningful inclusion and the sharing of care and compassion.
Mr. Axelrod writes “But now the ideal has hardened into dogma: All larger communities are bad. All small, neighborhood-based group homes are good.” That is not what is said now in policy or advocacy. Though housing and size of residential settings certainly matter, care and support are not locations; they are relationships. Inclusion does not come from the dismantling of walls alone, but from building real relationships and authentic engagement in the world. That includes relationships with non-disabled people. There are decades of compelling research that demonstrate individualized home and community-based supports are associated with greater health and safety, choice and control, and other outcomes related to well-being that stand in stark contrast to large, congregate institutional care.
The Brutal History of Segregated Institutions
It is important to address Mr. Axelrod’s last question that reads, “Instead of judging by size, isn’t the right path to fully fund an array of high-quality options and afford people like Lauren the dignity of choice and the happiness they deserve?” in more detail. To do so one must understand the history and impact of institutions for disabled people, especially those with intellectual and developmental disabilities, on people themselves and society at large. No amount of home renovation will make a home built on a toxic history “high quality” in any way that is scale-able or sustainable.
Mr. Axelrod rightfully describes the brutal history that has led to the “debate” between self-directed and community-based supports and large, congregate care settings. He writes, “the debate is rooted in an ugly history. For generations, Americans with intellectual disabilities were too often sent to large institutions where they were warehoused, abused and deprived of the opportunity to live their fullest possible lives.” For generations, families were told that not only would their loved one with a disability be safer and have a better life at large, congregate institutions but their family too would be spared the burden of their impact on the family. Society too was told that disabled people have “special needs” that can only be provided in “special settings” and that society would be protected from their “deviance.” Many institutions were touted as places where people with disabilities prefer to be with little regard to the reality that there were few if any other alternatives. Some had horseback riding, gyms, and pools as well. Willowbrook, one of the most harmful and disturbing of these institutions, had horses on their property at times as well as a pool, but this doesn’t excuse the abuse that occurred there.
Today’s Institutions Remain Harmful
The marketing and rhetoric promoting institutions of the past mirrors that of today. When institutions of past generations were reserved for those with families with resources of wealth, time, and attentiveness, some residents, likely lived for a time in relative ease despite not having choice over with whom they lived, who touched their body to provide support, how they spent their day, what they ate, or worse, and if and or how they contributed to their community. Many, however, did not find safety, care, or ease, and as large facilities became ubiquitous models of care for disabled people, many lived lives of terror. Many institutions, including Willowbrook regardless of the presence of gyms, pools, or well-manicured grounds, were rightfully labeled as “snake pits” and filled with abhorrent patterns of abuse and neglect and the lack of dignity that comes from being denied agency and authentic connection.
Unfortunately societal support for institutionalization, rather than supporting disabled people in their communities, then continued without the input, consideration, and talents of disabled people. This has been a self-reinforcing cycle of lack of societal acceptance used as a reason disabled people should live segregated lives. And the lack of visibility and input of people with disabilities, especially those with cognitive disabilities, has further reinforced this cycle.
Dignity for Disabled People
Happiness is not always a marker of dignity. Dignity, perhaps joy, and perhaps real social change come from authenticity and real engagement in and connection to this messy world and other people in it. Segregated facilities and institutions of the past and present are a bit like an amusement park.
Take, for instance, a desire to travel to Paris. You are told by the people who control your life, that based on your “special needs,” if you go to Paris, you won’t be able to get out of the car. They tell you that you can’t eat in the shops or go to the museums. You might say, “wait a minute, my needs have nothing to do with that. I can do those things,” but the person who controls your budget and life says that it is. Instead, they say you can go to Disney World and see a replica of Paris in the United States with a French restaurant. Perhaps that then becomes your “choice,” despite it being a forced choice based on a false premise. You go to Disney World, and you see a replica of the Eiffel Tower and eat French food but it is not the same and there is something real missing.
Large, congregate, institutions often function like this. People live in “home like settings” or “dorm like settings” and spend their days with only a small number of tasks and activities to choose from. It’s not the same as living in their chosen communities with freedom over their life choices. And while this replica of life may initially seem clean and shiny with attentive staff, soon as more people with disabilities come in and attentiveness and resources too often quickly wane. And this poor imposter of life becomes even more dehumanizing and often abusive.
Disability Advocacy and Research
Advocates involved with the Disability Rights, Disability Justice, and Neurodiversity movements have worked tirelessly for decades though to interrupt this cycle. Any gains have only been won by hard work, and in constant threat of being rolled back. In response to this advocacy, new funding streams were opened to support alternative models of care to help meet the needs of disabled people, which are no more “special” than anyone else’s needs. The need for love, connection, health, basic resources, and a sense of meaning are not unique to people with disabilities. And there has always been a range in how those needs are met. Just as most who are aging do not want to live in a nursing home, most people with disabilities do not want to live in an institution. Though early policy shifts did focus more on size of the residence as opposed to meaningful inclusion and quality of care, there was a recognition early on that institutional thinking and exclusion can persist in smaller residential settings. We do not want or advocate for smaller institutions, even institutions of only one person. We are advocating for dignity of choice, control, and authentic engagement and connection.
Size of the residential setting, however, is not insignificant. Though the data is flawed and limited, some research shows that larger, cognate settings have unique features that make abuse more likely to occur (see Thornberry & Olson, 2005). Beyond size, individualized community-based care is significantly associated with greater choice over where people live, how they are supported, and what opportunities they have for everyday choices like what to wear, do, eat, etc. (see Stancliffe et al, 2011; , Tichá et al., 2012; National Core Indicators 2019). During the Covid-19 pandemic, size of the residential setting was highly correlated with sickness and death of people with IDD, with those in smaller settings, with more control over who came into their home, significantly less likely to contract COVID, become ill, and die (see Landes, Turk, & Wong, 2021).
Regardless of the size of the setting in which people live, loneliness and violence are still pervasive in the lives of people with disabilities, especially those with intellectual and developmental disabilities. Abuse and exclusion occur at least in part due to the dehumanization of disabled people, as well as underpaid, under-trained, under-valued, under-vetted and under-supervised care staff. Addressing these root causes requires meaningful engagement and contact with the community. Addressing workforce issues is the only path forward, and that cannot happen in segregated settings.
Thankfully, there is a growing shift from the disability services system, largely funded by Medicaid, from large congregate settings to individualized, community-based, and self-directed services. And disabled people are helping to transform our society into one that is more accessible, more diverse, and stronger. And yet those changes are painfully slow for many disabled people. New pieces of legislation to expand Home & Community Based Services Medicaid funding criticized by Mr. Axelrod, including the Better Care Better Jobs Act, are attempting to do this, though the Better Care Better Jobs Act is not aiming to close settings such as the one that Mr. Axelrod’s daughter is living in.
A problem with one of the challenges of continuing to pour public funds into large congregate settings is that it segregates disabled people from society. This segregation is based on a history of eugenics: the belief that disabled lives are less valuable than non-disabled lives. We cannot continue to allow this dangerous history to determine public policy.
The Path Forward
We have a long way to go in creating a service system that supports freedom for all disabled people and treats their lives with dignity. Disabled people with support needs benefit from living in communities they choose. There they can live lives with authentic, loving connections, and contribute to their communities. We cannot go backward to systems rooted in segregation and eugenics. The path forward is one paved with an understanding that our world is better with disabled people in it, that we are all inherently interdependent and we are all better together. And the course of that path must be determined by the leadership of disabled people.
by the Alliance for Citizen Directed Supports:
David Savarese, Board Co-Chair
Marian Frattarola-Saulino, Board Co-Chair
Nancy Weiss, Board Treasurer
Caitlin Bailey, Board Secretary
Amanda Rich, Board Member
Anita Cameron, Board Member
Edward Willard, Board Member
Kyla Mundwiller, Board Member
Lateef McLeod, Board Member
Lydia X. Z. Brown, Board Member
Priya Penner, Board Member
Elayne Otstot, Communications and Member Engagement Coordinator
Kayley Margarite Whalen, Digital Strategy Consultant
Jordana Qi, Graduate Student Intern