Dignity Delayed, Part One

CHAPTER THREE, PART ONE

Presenting: Dignity Delayed

Content: discrimination, medicaid cuts

Featuring:

• Main Voice(s): Emerson Cram 
• Special Guests: 
  • Mary Helen Kennerly 

Highlights
This chapter tells the story of how the Disability Advisory Committee came into being because of a random encounter between V Fixmer-Oraiz and Seen and Heard, an activity group focused on disability advocacy. Join Emerson as they explore how Seen and Heard’s self-advocacy joins a long legacy of disability rights organizing in the United States. Learn about Seen and Heard, Judith Heumann, and the ongoing struggles to integrate disability into public life.

Conclusion
Seen and Heard’s impact on project design coincided with the period of privatizing Medicaid in Iowa, a moment reminiscent of the era prior to deinstitutionalization. The fight for full inclusion persists.

Transcript
For a full transcript of this episode, visit: disabilityecologiespodcast.buzzsprout.com

Credits
Episode written and narrated by Emerson Cram, University of Iowa. Recorded with Riverside FM. Production and Sound Editing by Maura De Cicco. All media clips are used for educational purposes only. Sound effects licensed through Pixabay.  

KWWL, “‘Healing Trail Opens at Johnson County Historic Poor Farm,” November 15, 2023.
C-Span, “Discrimination against the Disabled,” Senate House Labor Subcommittee Hearing, 27 September 1988.
Patty Berne and Stacey Milburne, “My Body Doesn’t Oppress Me, Society Does,” Barnard Center for Research on Women, May 9, 2017.
Des Moines Register, “Disabled Iowans say Medicaid firms Cutting Care,” 16 March 2017.
Zach Boyden-Holmes, “Mom Hopes for Delay of Medicaid Privatization,” The Des Moines Register 4 December 2015.
Who13, “State Auditor claims Iowa’s privatized Medicaid illegally denies care,” 20 October 2021.

Funding
Research, writing, and production have benefitted from generous support from multiple sources, including: the National Communication Association’s Karl R. Wallace Memorial Award; UI OVPR Arts and Humanities Initiative Standard Grant; UI Provost Investment in Strategic Priorities; UI College of Liberal Arts DSHB Humanities Scholar; CLAS Summer Humanities Award.

Special Thanks
With thanks to Maura De Cicco; University of Iowa Departments of Communication Studies, Gender, Women’s & Sexuality Studies, and American Studies (Especially Angie Looney, Kembrew McLeod, Eric Vázquez, Naomi Greyser, and Hallie Abelman); V Fixmer-Oraiz; Kim Painter, Johnson County Recorder; the 2024 Colby Summer Institute in Environmental Humanities Seminar, Claire Fox; Teresa Mangum; Jennifer New; Phaedra C. Pezzullo; Constance Gordon; and Jesse Waggoner. 

Audience Participation

• Call to Action: Do you have a poor farm or county home story to tell? Reach out to our team to learn more about how to share! 
• Support the Show: Share this episode with friends and colleagues, & stay tuned for future episodes. 
• Follow us on Social Media:
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Transcript

Transcript for Disability Ecologies Podcast Chapter Three, Part One: Dignity Delayed

Mary Helen Kennerly, 0:07: 
And I did not realize until I emailed with V recently, how much that kismet conversation in the parking lot of the poor farm really changed how all of this unfolded, how the project management unfolded. They told me that they had not realized at all what it would mean for a place like this to be inaccessible to some of the very people who would've been served there, to refigure it and not involve people with disabilities and mental health diagnoses fully, just how problematic that would've been and just how much of a historical injustice that would've been. And this is why Seen & Heard matters. We just went to a space and were ourselves and said things that were not intended to convince, but that were just true. And they completely changed the thinking of the project manager who's now a supervisor.

[audio of guitar strumming that slowly fades]

Emerson Narrates, 1:19:  
Although I barely knew Mary Helen before our first conversation, I immediately knew upon meeting that she was a force of change. Mary Helen (or May Hay, as her friends know her) is a person with a deep well of joyful compassion, who demands dignity for her people, and who contains an energy that could ease or galvanize anyone in her orbit. Over the course of her adult life, Mary Helen has been a creative writer, a strident advocate for disabled people in official and unofficial ways, and now she works within the community as a marriage and family therapist. You just heard her recollect a pivotal encounter with V Fixmer-Oraiz, the site’s former project manager, and now Johnson County Supervisor, in addition to Supervisor Lisa Green-Douglass. When that moment unfolded on a random brisk autumn afternoon in 2018, Kennerly was working in the day program for Systems Unlimited. Systems, as it’s known in the community, provides support and individualized social services for people with developmental disabilities and mental health needs. Those services include day habilitation, group homes, and opportunities for peer socialization in various group settings. Founded in the 1970s by a coalition of local parents, Systems emerged as a counter to hospital models and instead favored living settings with the least number of restrictions as possible. 

As she remembered it, that “kismet” conversation between herself, Green-Douglass, Fixmer-Oraiz, and a crew of individuals then known as “Seen and Heard” was the conclusion to one of many of the group’s excursions into the Iowa City community. Seen and Heard was the name for a daily activities group at Systems; activity groups are a required component of day habilitation, which focuses on peer socialization, skills, and community interaction. Given the political fights that helped shaped disability politics in the years prior, and Mary Helen’s own investments, Systems invited Mary Helen to focus her group’s goals on advocacy, in addition to meeting needs for personal care and daily activities. 

In the wake of new federal, state, county, and city policies that would challenge organizational funding, Seen and Heard provided a space for members—all connected to Systems—to practice self-advocacy, joining a long lineage of people active in disability rights and liberation. Some of those new policies included Iowa’s privatization of Medicaid in 2016, and the switch to managed care organizations, which arrived on top of a litany of unfunded mandates. Each of these events prompted Mary Helen to sink deep into the world of advocacy to support Seen and Heard’s members.

Mary Helen Kennerly, 4:41:
As we began feeling more and more political pressure in the field is when I turned from music, drum circle, karaoke, snack, walking club, foraging time to maybe we need to get out and make a little bit of noise. Maybe we need to say something about what's happening, just one thing after the other politically, from unfunded mandates to the start of managed care. And so that's when Seen & Heard was born.

Emerson Narrates, 5:08:
As this chapter details, the encounter that day outside of the historic asylum was also the beginning of something much bigger, and less sporadic or driven by unfolding crisis. That day, Seen and Heard would also pave the way for the creation of a new county-wide group grounded by the site’s history and renewed purpose. That group would be called the Historic Poor Farm’s Disability Advisory Committee, also known as the “DAC.” As you will learn, the DAC sparked new relationships that rerouted the project master plan and would leave a lasting imprint on the land. 

KWWL Anchor,[1] 5:53: 

A new walkway and trail is now open at a Johnson County Historic Site. The Healing Trail is a half mile paved path around the Johnson County Historic Poor Farm. That site was established back in the 1800s to care for low income and mentally ill people. In turn, those people completed farm chores. The county says the trail’s features are intended to promote contemplation and decompression following tours of the historic asylum building. 

Mary Helen Speaking to Crowd, 6:21: 

Problematic history, and that the poor farm model was standard for the time was not reassuring for the disabled folks. I think what our DAC, incompletely though, I speak for it, hoped to do was create the inverse of that. A landscape shaped by disabled people’s needs.

Emerson Narrates, 6:38: 

That was May Hay, speaking on behalf of the Disability Advisory Committee at the ribbon cutting of the “Healing Trail,” one of the many outcomes of the DAC’s guidance to the project planner. In that clip, she emphasized something crucial: need. 

We may all be familiar with different registers of that term: we have biological needs that must be met to stay alive, like nutrients and drinkable water and safe and secure housing. Those needs don’t cease when we enter public spaces, but many people often find meeting those needs to be unnecessarily challenging. Exclusionary design is everywhere but also at times imperceptible. Sara Hendren, an expert in disability design, asks us a seemingly simple question: “who is the built world built for?”[2] Every day, bodies encounter a world fundamentally at odds with our bodies, and we might experience smooth “ease” or “awkward” jostling. Built environments are reflections of who their designers imagine will use, occupy, or move through those spaces. And when a limited set of physiological, cultural, or familial needs shape that imagination, there are always people whose needs are rendered “burdensome.” That “burden” is a consequence of social segregation.  

You’ll remember from earlier chapters how one impact of anti-dependency thinking included the creation of the idea that, for the public, certain needs of certain people are burdensome. Even trying to find the etymological root of the word “need” raises my eyebrows, as I follow a chain of terms like “hardship,” “danger,” and “duty.” There is a reason why those committed to telling the story of disability history have used terms like “misfitting,” or “maladjusted,” or friction. Exclusionary design so often assumes a default of needs to what Aimi Hamraie calls “the normate template.”[3] The normate is imagined as a standardized user, but Hamraie shows how that standard is based on a myth. This template for default simply cannot capture the wider range of needs that any body or mind might have to participate in public spaces, and to be in community. So, when Mary Helen asked the audience that day to consider “need” from a different vantage point—not as “needy” or as a waste of effort or time—it was a significant reorientation. She invited us to think about in her words, a “landscape shaped by disabled people’s needs,” designed in dialogue and by those most impacted. Those needs included bathroom access, surfaces to wheel around, and gorgeous ramps designed for the most supportive of wheelchairs. They also include the more immaterial needs of recognition, acknowledgement, and dignity. 

I stood in the crowd that day, listening to Mary Helen recount her memories, and to Supervisor Lisa Green-Douglass speak on why the name “Healing Trail” was so crucial. At the conclusion of the speakers, we collectively celebrated Kevin—one of the first Seen and Heard and DAC members—wheel up to cut a ceremonial red ribbon. In the near distance, Grow Johnson County’s food production fields were on their way to resting for the coming late fall and winter. The confluence of the two held something together that I still sit with today: what happens when our communities center living need —in landscapes or food systems—that inescapable reality that connects all living beings? What if we can do so in ways where no one is imagined as a burden? What if it’s possible to design a world where there’s always enough? Where people are valued as innately whole, not based on external metrics of “worthiness”?     

In the first chapter, I shared why sleuthing for pieces of the poor farm’s documented history was so vexing. That was especially true for materials that might document the perspectives of those who spent part of their lives here—be that inside of the asylum or one of the later versions of the county home structure. I also discussed why restoring the asylum building was a meaningful way of preserving the wear traces of residents. In Chapter 2, we learned more about the poor farm’s cultural, social, and medical pathways, or the various reasons why someone would be sent to the farm by the overseer of the poor or Board of Supervisors.  

This chapter tells the story of the Disability Advisory Committee: from why it was created, to how their recommendations impacted the site, and their still ongoing work as of the fall of 2025. Because of their efforts, Johnson County has the only remaining structures of an historic poor farm, a unique piece of disability history. This now creates the grounds of a site of conscious to inspire future community building, reflection, and action. I’ve worked alongside people in the DAC since 2022, when the group reconnected after the very debilitating early years of the COVID-19 pandemic. From our work, I’ve lingered with how we can tell stories about disability across the site’s local food projects, even in ways that seem at first unrelated to how we might know or understand disability. In all, I find myself asking: when we choose with intention, to commit time and energy, to restore dependency as a relationship to life, rather than cost or stigma—what other futures become possible?

[transition into running Introduction, with guitar strumming and soft ooo vocals underneath Emerson’s spoken narrative]: 

Disability Ecologies is a podcast series dedicated to telling the story of the Johnson County Iowa Historic Poor Farm throughout its lifespan: from its origins to attempts at preservation to the still unfolding dynamics on site today. My name is Emerson Cram, I’m a place-based researcher and storyteller based in a small college town in the midwestern region of the United States. Since 2019, I’ve worked alongside community members and county administrators to tell the story of the historic poor farm’s history, its planned transition into a national historic site, and a vibrant place for building connections to land and people through local foods. As a note on content, throughout each chapter, you will encounter historical language that describes disabled and “mad” people (or those who might otherwise be called mentally ill). This language is outdated and pejorative by modern standards. These terms and the content overall may feel triggering to some listeners. I’ve chosen to include terms within the historical record of social services, psychiatry, and social sciences because they are windows of meaning into the period, and it’s also important I be honest about what the historical record shows us about our past. [End running introduction].

Emerson Narrates, 15:59: 

Seen and Heard’s 2018 visit to the poor farm asylum came at a time of massive ground shift for those working within Medicaid funded services like Systems. Medicaid and Medicare originated as the “Social Security Amendments of 1965,” and paved the way for health insurance programs for those with limited income and the elderly. Iowa had a notable role in these shifts in national disability rights policy. They include the “Katie Beckett Waiver,” which passed in 1982 after President Ronald Reagan learned of Katie’s story.[4] Katie acquired encephalitis as a toddler, which required extensive time in hospital settings. When she was released to go home, she continued to need medical care, but Medicaid did not provide coverage for non-institutional settings. Katy’s story resulted in the waiver, which has since enabled Home and Community Based care, where individuals can receive supports in the least restrictive setting. Another Iowan—Senator Tom Harkin—authored and was the lead sponsor of the Americans with Disabilities Act of 1990, which turned 35 in late July 2025.  

But before there was Senator Tom Harkin or Katie Beckett, there was a U.S. disability rights movement. At the Senate House labor subcommittee session on the ADA, a woman named Judith Heumann of Berkeley, California’s Center for Independent Living spoke of the need for the legislation based on her experiences with disability discrimination:

Judith Heumann,[5] 17:54: 

When I was five, my mother proudly pushed my wheelchair to my local public school, where I was promptly refused admission because the principal ruled that I was quote a fire hazard endquote. I was forced to go on home instruction, receiving one hour of education twice a week for three and a half years. Was this the America of my parents’ dreams? My entrance into mainstream society was blocked by discrimination and segregation. Segregation was not only on an institutional level but also acted as an obstruction to social integration. 

Emerson Narrates, 18:30: 

By necessity over the course of her life, Heumann became a self- and community advocate, most notable for her activism in 1970s of San Francisco. In 1977, Heumann lead over one hundred disabled people in what is now known as the “504 sit in.” The action, which stretched over 26 days, occupied the federal Health, Education, and Welfare Federal Building, located in the city. The reason? Implementation of Section 504 of the 1973 Rehabilitation Act, which would prohibit discrimination of disability in programs receiving federal funding—was intentionally delayed, enabling ongoing discrimination. 

Recalling Heumann’s ADA testimony, discrimination could mean unusable public transportation, recurring barriers to enter public buildings or to move up and down their floors. These are all examples of exclusionary design, which function to diminish efforts of social integration. Activists believed occupation could mount the necessary pressure for actions of implementation, and their gamble would ultimately succeed. Those who engaged in the action were supported by a broad coalition of movements who delivered food and other supplies, including the Black Panthers and United Farm Workers, collectives with whom disability community had already forged social bonds.[6] 

Heumann and so many others not named here are some of the precursors of advocacy premised in inherent dignity, and the indignity of social segregation. Their work was deeply informed by the cultural energy of the civil rights moment of the 1960s and 1970s. Movements did not only forge social bonds with each other; members interfaced across movements and built powerful coalitions. The Panthers met people’s need for sustenance because of Brad Lomax, a Black Panther and disability rights organizer, who had multiple sclerosis and used a wheelchair.[7] He was an organizer with deep knowledge, and the relationship he forged between the Panthers and the sit-in energized the protest, feeding their fight for nearly a month. 

504 was a commitment to naming the “social model of disability.” One central goal of the social model is to ask how built environments themselves produce conditions that are disabling. Here are two luminaries of disability culture reflecting on their own relationships to the social model and the language of “impairment.” The first speaker is Stacey Park Milbern, a Korean American disability activist, and founder of the Disability Culture Club. The second speaker is Patty Berne, a Japanese Haitian queer, and non-binary artist, who founded the performance group “Sins Invalid.” 

Stacey Milbern,[8] 22:06:

So, if you and I go into a building, and there’s no ramp, typically people would say the problem is that we use wheelchairs. Whereas the social model of disability would say the problem is that the building is not accessible. And it doesn’t seem like a radical concept, but it changes the fundamental way we think about disability and the work that we need to do to include people with disabilities. 

Patty Berne, 22:29: 

People often don’t understand ability to be within this kind of context and access to adaptive devices and where we are located economically. You know when I have my access needs met, I’m functionally not disabled, you know? But when places have stairs and everything is built for people that stand so I can’t see anything, and you know it’s a really dark environment, so I can’t anything, because as you know, as you get older, your vision changes. So, in an environment like that, of course I’m disabled. 

Stacey Milbern, 23:05: 

I really like separating out impairment from disability. So, impairment as, you know, like physical or neurological manifestation—like what’s real. I have a physical impairment. And then disability is like what society creates as barriers because of the impairment. So, like, as you were saying, if we’re in a place where my access needs are getting met, my impairment is not so significant. But when it’s not, because society doesn’t want to, then that’s the problem. So, I think it’s important to really think about disability and the context of what is disabling, like the environment……

Patty Berne, 23:47:

My body doesn’t oppress me….my body’s fun. But, society, that can be incredibly oppressive. 

Emerson Narrates, 23:56: 

Although the U.S. disability rights movement provided a language for legal recognition and accommodation in the context of health care, employment, education, and transportation, the fight persists even today. Over decades, disability rights activists confronted the cultural stigma attached to disabilities and the oppression that would symbolically and literally separate the disabled as a class of people. The irony of doing so is that this world is one taken for granted by those not yet disabled. The economics of disability, much of which was created at the onset of the poor farm era in the U.S., often rely on the assumption that people are “burdens” on systems designed for efficiency. This myth does not fall evenly along the lines of race, class, labor force, or nationality, however. 

A different generation would deepen an analysis of disability oppression, asking how systems of power shape the intersections of disability, nation, race, class, and geography. Berne and Milbern, joined by Mia Mingus and Leroy Moore, would call this analysis disability justice, and they would also emphasize how disability becomes a resource of radical creativity as a life necessity for navigating the world. Rather than deficit thinking, disability justice celebrates the asset of disability for community building, creative strengths in making the care webs critical to meeting collective needs. 

[audio of crowd chanting: “This is What Democracy Looks Like!” with a tambourine in the background. Speaker yells, “Show me what democracy looks like?” Crowd answers, “This is what Democracy looks like.”]

In Iowa, the ground shift of the early 2000s hit public support systems with a fury. Some of those events were specific to Johnson County, and others were statewide. In 2013, SEATS, a paratransit system, was embroiled in a controversy about who should provide funding—surrounding cities of Iowa City and Coralville or the county. From the vantage point of those at Systems, the impact wasn’t simply an “inconvenience” to someone’s day based on bus schedules. Paratransit is a form of disability design mandated by the ADA; and it is access that preserves independence when transportation systems are not designed for disabled people’s needs. Anything from fares to its overall availability will impact someone’s quality of life, from one’s ability to pay, to the ability to attend community events such as religious services that newly fall outside of paratransit service days. Then Supervisors framed their difficult budget choices as reluctance to continue “subsidizing” a program for the cities, even pitting SEATS against the broader funding picture for health and human services. City and community leaders challenged the county’s “subsidizing” perspective, noting it was at odds with an orientation that recognized mutual partnership in meeting citizen needs with public funds. 

For folks like Mary Helen, threats to services like SEATS necessitated rooting into the longer history of disabled advocacy, as much as they were also reminders that those most impacted by policy changes are rarely if ever making those decisions. 

Mary Helen Kennerly, 28:07:
It feels like I was a part of a very particular moment, but I also want to say that I'm pretty sure political pressure, political shifts, unfunded mandates have been the reality for anyone working in this field since it began. I mean, it is a field that's shaped by policymakers who aren't stakeholders. 

Emerson Narrates, 28:27:
The privatization of Medicaid in Iowa—which transferred federal dollars to private insurance companies—took an enormous toll on those providing direct support, who were committed to give care with dignity. In 2015, then Governor Terry Branstad announced his intention to turn Iowa’s Medicaid program over to Managed Care Organizations, or MCOs. These are private-for profit insurers who Branstad insisted would create efficiencies, lower costs, and improve the quality of care. The shift took place in April 2016. From the beginning, Medicaid beneficiaries spoke about their fears of privatization. According to a Des Moines news station covering protests, many feared the plan would rob them of choice in selecting providers, especially for specialist care with the Mayo Clinic in Minnesota.[9] 

In the years since, Iowans have found that privatization did not save money, nor increase quality of care. In fact, many care providers missed paychecks. For those needing care, supportive time in home settings met new arbitrary limits that did not align with actual needs. 

Jamie Campbell, interviewed by Des Moines Register,[10] 30:00:
I was injured in a high school wrestling accident in December of 1988. With my injury, I’m a quadriplegic, which means I’m paralyzed from the shoulders down. CDAC program was through a health and disability waiver. And it has somebody come in for 5 hours a day. 

JANA CRISWELL, interviewed by Des Moines Register, 30:24: 
CDAC is Consumer Directed Attendant Care. And in Jamie’s case, he’s a quadriplegic, so I come in and I do anything that Jamie cannot do and since he cannot move from his shoulders down, that is everything. 

Jamie Campell, 30:41: 
The changes that I got someone here 5 hours a day, and they cut it to a little over 2 hours a day. And for what they want to be done, there’s no way I can get everything done in 2 hours that we were doing in 5 hours. I haven’t seen any benefit the way Medicaid was before to the way the MCOs. Without the CDAC program, a big possibility I’d be in an institution or a facility like a nursing home. I don’t want to be in a nursing home. I’m still relatively young, I’m only 44 and feel like I’m still giving back to society as much as I can. You know, school board, I help teenage kids and do some tutoring. So, I feel like in the nursing home, I wouldn’t be able to do that stuff. 

Jana Criswell, 31:49: 
Since the MCO took over, I think it was April, and from April until now, there has not been a consistent month where I’ve been paid on time. Currently, they are two months behind on my pay. It’s a rewarding experience to be able to help somebody stay in their home, but since the switch from Medicaid to the MCOs running the program, it’s not efficient, and it’s not something I would want anyone to get into. The point of having a job is to get paid, and if you’re not getting paid, then it’s too difficult to deal with. If my hours get cut, I will stay here as long as I can. For instance, I’m actually down to the 2 hours a day, but I’ll be working the 5 hours for him. So, I’ll stay here as long as I can, but I am going to start looking an additional job. 

Des Moines Register, 33:01: 
So, you’re going to stay for 5 hours even though you’re only getting paid for 2? 

Jana Criswell, 33:04: 
Correct. 

Des Moines Register, 33:06: 
How can you do that? 

Jana Criswell, 33:08:
How can you not?  

Emerson Narrates, 33:10:
But even before those changes went into effect, families could sense how difficult care access would become. At the end of 2015, another Iowa family talked about how access to their preferred providers meant decreasing their child’s medications, and most importantly, keeping him out of long hospital stays. This translated into saving thousands of dollars for both their private insurance and Medicaid:

Kelly Ramus, interviewed by the Des Moines Register,[11] 33:43: 
He is…a child that comes from the foster care system. And experienced trauma. And has experienced exposure to drugs. And with that has created irreversible damage. But what we can do is help him be successful. I’ve tried to contact three out of the four MCOs. Traynor was pre-selected for Well Care of Iowa. And I contacted them, and I asked about 8 different providers, and none of them had signed up at that particular time. And then I also tried United Health Care and Amerigroup. And again, Traynor’s providers were not on that list. If he doesn’t get the services that he needs to help him be successful, that’s potentially what we could be looking at. My concern is, with the disruption of services, what’s the backup plan for our families? 

Emerson Narrates, 34:50:
What’s important to note here is that private companies acted with the belief that services were burdens on the bottom line; those providing support did not share that belief, in fact, they tried to compensate for it in ways that were far beyond their individual capacity, exhausting personal energy or incomes. Mary Helen shared what impacts of privatization that she witnessed during her time in the field: 

Mary Helen Kennerly, 35:23: 
I definitely, three years later, saw the effect of privatization on both the company and on the people it served. And we got 90 days behind on billing. We're not paid for 90 days. When it became clear that it wasn't even in the pipeline, the MCO's pipeline to be paid, alarm cries were raised, the boss was on the phone, the owners of the company were on the phone every single day just trying to get some kind of movement. Both owners mortgaged their homes to fund the company and keep paying us. And it was a smaller operation, basically they had to move most of the staff to part-time just to make it work even once money came in. And that meant that everyone who was full-time had to manage double the caseload, and people got less time and staff were more stretched, and we couldn't take new clients. And I think ultimately that destroyed that company. 

Emerson Narrates, 36:31:
In 2019, State Auditor Rob Sand called for a detailed audit of the new system, then three years in operation. That report in 2021, ultimately revealed an 891% increase in illegal denials of care. Here’s Sand speaking about those findings in 2021.

WHO13 News Anchor,[12] 36:59:
Auditor Sand joins us this afternoon to talk about what exactly this audit found. Appreciate you being here, and the upshot is that you found the number of Iowans being illegally being denied service is up 500 to 890 per-cent? Not cases, but percent? 

Auditor Rob Sand, 37:18: 
That’s right, Dan, yeah, thanks for having me. What we saw was in the last three years of publicly run Medicaid to then the first three years of privately run, the number of times that independent judges overturned denials of care—meaning they said this was wrong to deny this care, we’re going to give this person their health care back, increased 891 percent. The number of times that they agreed with the denial, that they said this is reasonable, this is appropriate, this reduction of care we are going to uphold went down 72 percent. There’s really no explanation for this other than these companies that are running the program were more willing to take bad cases all the way to a judge.”

Emerson Narrates, 38:02:
The cascade impacts of privatization were broadly negative, so much so that Managed Care Organizations seemed to start embodying their historical predecessors of large institutions. Because of impacts to funding, staff time and patient numbers, these settings became increasingly restrictive. Mary Helen continued:  

[soft waves of music underlay Mary Helen’s narrative] 

Mary Helen Kennerly, 38:29:
And the thing about privatization, and this is a slow thing, like some policy changes are, it makes it impossible for small operations to survive. And it is a kind of re-institutionalization. And, ultimately, when you have to have the kind of cashflow and buying power and ability to take a hit that you're required to with these MCOs paying the way they do and the way they don't, that all you've got are really, really big companies and what does that sound like? And it's like they're forgetting where we've been. It used to be sure, it was really efficient to run institutions, and that was cost-effective, and we made some changes based on humanitarian reasons that lawmakers are in the process of undoing without realizing it. 

[audio of music fades into the background]

Emerson Narrates, 39:23:
In the wake of all these drastic changes and more fights on the line, when Systems pitched an outings-based advocacy group to Mary Helen in 2018, she took up the task with enthusiasm. In their early days, Seen and Heard made their way into spaces in the community, which at times was a reminder of how few accessible options were available. By accessible, I mean large spaces where people and their chairs moved around, sound moves freely rather than through hushed glances and stares, and people can be public together, interacting with community members. The few options available in Iowa City recall for me how Heumann witnessed the absence of social inclusion. They also highlight how the relative invisibility of disabled people from public space remains with us even now.

You can continue listening to this story, with Chapter 3, part 2, next, on Disability Ecologies.

[1] KWWL, “‘Healing Trail’ opens at Johnson County Historic Poor Farm,” 15 November, 2023, https://www.kwwl.com/news/healing-trail-opens-at-johnson-county-historic-poor-farm/article_4078adfa-83bc-11ee-b9a9-3f008b08a559.html.
[2] Sara Hendren, What Can a Body Do? How We Meet the Built World (Riverhead Books, 2020), 17.
[3] Aimi Hamraie, Building Access: Universal Design and the Politics of Disability (Minneapolis: University of Minnesota Press), 2017.
[4] Sara Basehart, “Disability History: Medicaid Home and Community Based Services,” Independence Now 11 November 2021, https://www.innow.org/2021/11/11/disability-history-hcbs/.
[5] C-Span, “Discrimination against the Disabled,” Senate House Labor Subcommittee Hearing, 27 September 1988, https://www.c-span.org/program/joint-committee/discrimination-against-the-disabled/2484.
[6] According to this interview with Heumann, disability community already organized with Black Panthers and the United Farm Workers. Interview with Judy Heumann, Able South Carolina, no date, https://www.able-sc.org/resource-library/uncategorized/transcript-interview-judy-heumann/.
[7] Sami Schalk, Black Disability Politics (Duke University Press), 2022.
[8] Barnard Center for Research on Women, “My Body Doesn’t Oppress Me, Society Does,” 9 May, 2017, https://www.youtube.com/watch?v=7r0MiGWQY2g.
[9] Jacob Peklo, “Iowans head to the Capitol to protest Medicare, Medicaid Privatization,” We Are Iowa 24 February 2016, https://www.weareiowa.com/article/news/local/iowans-head-to-the-capitol-to-protest-medicare-medicaid-privatization/524-91827414-b3b8-4751-a937-149d942ad861.
[10] Des Moines Register, “Disabled Iowans say Medicaid firms Cutting Care,” 16 March 2017, https://www.desmoinesregister.com/videos/news/2017/12/22/disabled-iowans-say-medicaid-firms-cutting-care/99285806/.
[11] Zach Boyden-Holmes, “Mom Hopes for Delay of Medicaid Privatization,” The Des Moines Register 4 December 2015, https://www.desmoinesregister.com/videos/news/investigations/2015/12/04/76807434/.
[12] Who13 “State Auditor claims Iowa’s privatized Medicaid illegally denies care,” YouTube 20 October 2021, https://www.youtube.com/watch?v=Vl57QAw_kSk.