70 Million S2 E2 Transcript

When Disability Requires a Different Approach

Pigeonhole Episode 53

[bright ambient music]

Pigeonhole introduction

CHORUS OF VOICES: Pigeonholed, pigeonhole, pigeonhole, pigeonhole, pigeonhole, pigeonhole, pigeonhole, pigeonhole.

CHERYL NARRATING: This month, something really different. In 2019, I reported a story for 70 Million, a podcast about prison reform. I’m not a journalist, but I consider myself very politically engaged. To me, disability topics are social topics, cultural topics, and political topics.

[music fades into lo-fi chill music]

I wasn’t gonna air this episode on my own feed, though I’ve never stopped thinking about it and the people I spoke to. That includes the many, many people I recorded who didn’t make it into the episode I’m going to play in a few minutes here. But this week, I got an email from someone I’ve never met who took from the episode what I want people to take. She didn’t reach out to talk about “special needs” or inspiration. She reached out, near to tears, to tell me how the episode landed with her at this time when many in the government are doing their best to eviscerate Medicaid. This is among many other political endeavors that are ethically a complete mismatch with everything I stand for, and maybe her as well.

We know history, and we repeat it anyway because people have different worldviews, different values, and view ethics differently. Whether it’s the Nazis going for a fast elimination of disabled people through their Aktion T4 program as a practice run for the Holocaust, or the US’s slow elimination of disabled people through COVID denialism, destruction of outstanding public health measures, or removing the limited funds disabled people have to access limited healthcare, it’s the same to me. It’s an argument about finding my community to be nothing but a drain on society with nothing positive to give, and other, worse, rhetoric I don’t care to talk about here.

I’m not going to join in the rallying cry of “now more than ever” because I feel that sentiment devalues the long, long history of incarcerating d/Deaf and disabled people in asylums, warehouses, prisons, and even family homes. And the long history of fighting it. I’m posting my episode, When Disability Requires a Different Approach now even though I find the title the show gave it a bit understated. It has always, and will always, require a different approach to what we have.

I’m reading Alex Green’s book A Perfect Turmoil right now, which I encourage you to check out if you’re interested in the history of special education, mass institutionalization, and eugenics. And please find incredible research on deafness, disabilities, and incarceration through the hard work of The Marshall Project and HEARD (Helping Educate to Advance the Rights of the Deaf). There are others, but start there. [lo-fi chill music fades]

I’m sharing the transcript provided by 70 Million. The PDF they have linked on their website with the episode isn’t accessible, so I made a text version for the blog post. Also on the website, and not screen reader accessible, is a toolkit with lots of links and resources. Here’s the episode, When Disability Requires a Different Approach, from 2019.

70 Million introduction

Mitzi Miller: 70 Million adults in the United States have a criminal record. This is season two of 70 Million, an open-source podcast about how people, neighborhoods, counties, and cities are breaking cycles of incarceration—starting with the local jail. I’m your host, Mitzi Miller.

“So I got to experience the uncomfortability of just being stuffed in a cage and all of that. It was really scary.”

“We’re keeping people down there with rats, roaches. And we spend $16 million on it every year.”

“We eliminated cash bail bonds in the city of Atlanta.”

“There’s no one who has been incarcerated, including myself, who has been

helped by incarceration.”

Introduction

More than two million adults in the U.S. have an intellectual or developmental disability. Called “I/DD” for short, the range of conditions includes autism, exposure to drugs or alcohol before birth, and childhood brain injuries. These diagnoses are all different, but there are some common threads for people who have them. One is that everyday tasks can be extra-challenging: things like following instructions, filling out forms, or adapting to unplanned changes. And, dealing with police and the courts presents very specific obstacles.

Today, we’re going to Oregon, where a little over two percent of the prison population has been diagnosed as having an I/DD. That number doesn’t tell us everything; we can’t say for sure how many people either haven’t been diagnosed, or never reported it to authorities. But, for the people the state knows have I/DD, Oregon has an innovative program called Support Services Brokerage. It was first started to connect people to the kinds of services all states provide and to help with things like housing and jobs. But, the program also helps people already in jail, and sometimes, helps keep them out altogether. Reporter Cheryl Green has our story.

[Walking sounds.]

Patricia’s story

Green: I meet 40-year-old Patricia Kennaday on a sunny spring morning. She lives in a small mobile home park in Roseburg, Oregon—that was the three-hour drive I mentioned. I’m here with her case manager, Robyn Reedy, who’s happy to come out to Patricia’s place instead of meeting in the office.

Kennaday: I’m not really in a good mood.

Reedy: Aw.

Kennaday: It’s been a terrible, terrible night.

Reedy: No.

Green: Robyn wraps Patricia in a warm hug.

Kennaday: Yeah, it’s been terrible.

Reedy: Well, let’s go fix it.

Green: Patricia has long blonde hair, meticulously styled. She wears a baggy sweatshirt and jeans and makeup that makes her eyes shimmer. Inside, the dishwasher is running, but there are piles of laundry in the living room—Patricia’s been too upset to get to it. She tells Robyn that she had an argument with the mobile home park manager the night before. That’s the “terrible, terrible night” she’s talking about.

Kennaday: She called the cops on us, and so I called the cops on her.

Green: And later on, she tells Robyn, she was still upset, so she called the police eepartment again. She told the officer she couldn’t reach any of her Personal Support Workers—the people who would usually help in these situations—so, she was calling him instead. She says she told him…

Kennaday: “I can’t calm down. I’ve been trying to meditate, and I can’t even get out of my head.” He told me to put on some jazz music.

Reedy: Put on some jazz music! Did you tell him, “Wrong music?”

Green: The police don’t know Patricia as well as Robyn does, so they don’t know that she doesn’t like jazz. But, they field a lot of calls from people who don’t have emergencies, and Patricia told us that putting on some music to relax was actually a pretty good suggestion.

Kennaday: They helped me calm down last night a little bit.

Reedy: So, you’ve actually been having some good interaction with the police officers lately.

Kennaday: Mmhmm. I still had to call the non-emergency line and get the ambulance over here because I was freaking out.

Green: Patricia tells me she had a severe traumatic brain injury when she was 19. She’s never been incarcerated, but she’s had a lot of contact with police. It wasn’t so long ago that if she forgot whether she’d taken her medication, she would have panicked and called 911. That could get her charged with a Class A misdemeanor. You’re not supposed to call 911 unless it’s really an emergency.

Kennaday: But I try not to do that anymore.

Green: She and Robyn have worked hard on learning the difference between when it’s time to call 911, and when the non-emergency number is enough.

[Phone ringing]

Kennaday: Oh, that’s mom.

[Music break]

Oregon brokerages

Green: Robyn has been Patricia’s case manager for nearly a decade through the Southern Oregon Support Brokerage. Brokerages are non-governmental organizations with case managers that provide an alternative to the county-based services that every state has. A big difference is that brokerage caseloads are capped. Case managers I talked to said that having smaller caseloads can mean they have more time to spend with each client.

Robyn says she has to check in with Patricia once a month. But, she’s happy to talk more often if it helps Patricia stay focused. Every morning, she says…

Reedy: About 8:00, 8:01, the phone rings, and I’m usually shocked if it’s not Trish.

Kennaday: If it’s an average day, I only call you about five times a day. When I’m really anxious, I call you like 30 times a day….

Green: Before the brokerages opened, a person like Patricia wouldn’t have had an advocate like Robyn. Oregon had large I/DD institutions, which gained a reputation for neglect and abuse. The state started closing them in 1987. That meant thousands of people then needed to be set up with services individually. Case managers were overloaded and focused on housing people in staffed group homes and managing crises. Wait lists to get services sometimes lasted years. In 2000, five Oregon families sued the state. The result was forming the brokerages. The first clients started enrolling in 2001. Their mission was to help clients access services and live independently.

Things have changed a lot since then. The Affordable Care Act gave states a way to access more funding for I/DD. Oregon was one of the first to opt in, and now county agencies can provide similar services to brokerages. And the state no longer has wait lists.

Kimber Sieffert: People are not denied services at Multnomah County. If we get an influx of people coming in, clients coming in, then the case managers end up having to absorb that somehow, you know. And we do. My name is Kimber Sieffert, and I am a senior case manager with Multnomah County DD services.

Green: Kimber and I are talking in a conference room in the downtown Portland DD services office. Kimber says overall, Oregon’s system is really strong. But, there are holes.

Sieffert: The jails and the prisons really don’t have the kind of supports that these clients need.

Green: Kimber and many people I talked to say since not everyone with an I/DD has an official diagnosis, the number of incarcerated people with I/DD is likely higher than what’s been reported. Some people might be struggling but not know it’s related to a disability.

Sieffert: They know that there’s something that’s different about them that makes it harder for them to understand information that’s given to them or makes it harder for them to actually express themselves.

Green: From the moment a police officer approaches a person with I/DD, there can be huge consequences. Take, for example, the story of 15-year-old Sir J. Millage. An African-American, Sir’s autistic and non-speaking, which you can’t tell just by looking at him. It’s the middle of the night in Portland in 2006. He’s walking barefoot down the centerline of a bridge wearing only shorts and swinging a stick. Someone calls the police. Officers approach and address him from their vehicle. And instead of responding, Sir keeps walking. If you’re familiar with autism, walking away is understandable and not unusual. But, if you’re not familiar with autism, you might think someone like Sir is just being defiant. And that’s what happens.

The officers suspect Sir is either under the influence or mentally unstable, and they tase and beat him with a baton. He’s taken to the emergency room for medical attention. This story highlights a few things: one, that if a person with I/DD can’t explain or advocate for themselves, situations with police can quickly escalate. And two, that there are real racial disparities in who gets support. Black children with autism and language or learning disabilities, for instance, tend to be diagnosed later than white children, which can delay getting support and services. In the end, Sir Millage wasn’t arrested.

But, when a person with I/DD is arrested, more problems can arise. The mandatory Miranda warning has complicated sentences and vocabulary. That can be confusing for someone who needs more time to understand what they’re told. Every command, question, and piece of instruction is a new chance for miscommunication—same thing with bookings and hearings. That’s why a case manager like Kimber can make all the difference.

Sieffert: I’ll finally find out the name and number of the lawyer, and I’ll call them about a client that you know is in jail and you know facing hearings. They’ll be like, “Oh! He’s DD? I didn’t know that.” Yeah!

Green: Lawyers aren’t necessarily trained in how to make things clear for clients whose thinking or language skills might be impaired. So Kimber and other case managers I spoke with told me the lawyers appreciate their help.

Sieffert: “So, what can you do for him then?” [laughs] That’s what I usually hear, you know?

Green: I’m just imagining for the person who needs that kind of reiterating, if they’re going through the system and their public defender or whoever isn’t repeating and checking to make sure that they understood, I just—

Sieffert: That would be really scary to then be in that position of being in front of a judge, you know, and what’s going to happen to me? My life is in their hands.

Green: Case managers aren’t just advocates. Remember: their main job is to connect people with I/DD to services and accommodations. To take advantage of that, people have to know a case manager like Kimber is an option.

Sieffert: One of the biggest problems is they don’t know we’re there.

Green: Counties and brokerages both work to get the word out with brochures at schools, doctors’ offices, and info fairs for I/DD services. But still, not everyone who could qualify will come across a brochure. This is one reason some people fall through the cracks.

Kade’s story

Deborah: Do you want me to be here while she’s interviewing you, or do you want me to just disappear? Does it matter to you?

Kade: Not really.

Deborah: All right, so I’ll just sit in the background, and then maybe if I get too bored I’ll leave. All right? [Laughter]

Kade: No, you’ll start correcting me.

Deborah: No, I’ll make sure I don’t do that. [whispers] I promise.

Green: Kade Threadgill lives in Beaverton, just outside of Portland, with his adoptive parents, Deborah and Ron. He’s a slim man with glasses and wispy hair. When I first meet them at their house, he’s a few months shy of 25. Kade and Deborah take turns sitting on an overstuffed sofa and petting a small dog, who’s dressed in a gray and white sweater.

Kade: Ginger loves to have her belly rubbed. She’s basically my younger sister, who’s technically older than me, but in dog years.

Green: Both Deborah and Ron say Kade has always been open and sociable. Kade agrees, but…

Kade: Some people, they just didn’t understand me, and they judged me because of that. I was in depression most of elementary school.

Green: Kade’s attentive and finishes his parents’ sentences, or corrects them if he feels they got a detail wrong. Deborah tells me how growing up, Kade received extra educational supports for reading and ADHD.

Deborah: But now, he reads volumes. He reads everything. So that’s, that’s kind of what up until grade school. And then, he—

Kade: Don’t forget: you homeschooled me.

Deborah: And I homeschooled him because of the fact that he wasn’t progressing in school.

Green: After homeschooling, he went back to public school, then alternative school and private school, and finally went for a GED. After that, he struggled to keep a job.

Kade: I worked at Salvation Army for a little while, and I was at a donation pod. Some of the people that donated things, would say, they would see my expression at the item that they would donate. And, they were like, “Do you want this?” And I was like, “Yes.”

Green: But, he knew the Salvation Army would consider this stealing. Employees aren’t supposed to take donations for themselves.

Kade: I actually had to quit the job—

Green: —because he was worried about the consequences of taking donations. By the time he was 19, Kade had already been in counseling for many years. But around this time, he changed therapists.

Deborah: It was when we switched therapists and he interviewed Kade, and the second visit he said, “You know, I think Kade has some threads of autism.”

Green: Deborah says this is the first time anyone had suggested Kade might have a developmental disability. His parents took him for testing, and he was diagnosed with Asperger’s, what’s now just called Autism Spectrum Disorder. Right away, Kade’s diagnosis helped his family understand what they’d always called his “quirkiness” and why the educational services were never enough.

Revelations like this aren’t uncommon: kids with I/DD can go undiagnosed, sometimes until adulthood, if people around them don’t know what to look for.

Deborah: When we read about some of the social cues and things like that, we said, “This is it! It’s Asperger’s.”

Green: So Kade’s 19, had quit his job, gotten this new diagnosis. And, like many teens, he’s thinking about his independence. But, his parents are worried about him being able to live on his own. Since he isn’t enrolled in Medicaid, group homes with built-in structure for people with I/DD aren’t an option.

Deborah: You know, we had wanted Kade to be able to start moving out, moving on his own, but realized he needed some independent living skills.

Green: Like managing his finances and keeping track of his own schedule. So, they go to a housing conference hosted by the Autism Society of Oregon and find a table with information about brokerages.

Deborah: Then, they explained how a person gets to be with a brokerage and that they had to apply and they had to go through this process to be classified for developmentally disabled.

Green: One of the big issues with the I/DD services system is that it’s bureaucratic. To get a case manager, first Kade has to be certified as eligible through the county, not the brokerage. That process can take months. And they don’t know it yet, but for Kade, time matters.

Deborah: Where we were living, there was an apartment complex across the street, and Kade would go and he would play with the younger kids. And we said, “Kade, that’s not such a good idea, because you know you’re a teenager. You want to be a good example, but it’s not good.”

Green: One day, Kade leaves his tablet on the dining room table, and his dad spots a text from a 14-year-old girl who lives nearby. From the text, it’s clear that Kade and the girl are sexually active. She’s a minor, and at 19, he’s legally an adult.

Kade: I felt that I was emotionally, socially accepted by younger people, probably because of my maturity level at the time.

Green: Which is something Kade’s parents agree with. Later that day…

Kade: They told me that yes they were going to call the police. I was completely supportive. Once they laid out the whole situation for me, I could actually comprehend it, and I actually understood just how wrong of a situation I got myself into.

They give statements to the police and surrender Kade’s tablet. Then, nothing. A few months pass.

Deborah: So, then we get a phone call, and the detective said, “I’ve been putting off this phone call. But, the grand jury just met, and they have an arrest warrant for Kade.” We were in, well, shock is to put it mildly.

Green: As Kade’s dad, Ron, is leaving to drive Kade to the county jail, Deborah reminds him….

Deborah: I said, “Now please, please make sure that they know that he has Asperger’s. Make sure they know he has Asperger’s.”

Kade: There’s so much emotion that you don’t realize you’re going to feel when you’re actually in jail. You feel like you’re all alone. Even though I’m ADHD and I should be taking ADHD medication, because it’s a drug, they wouldn’t allow me to. And, my parents specifically told them, “He has ADHD. He has Asperger’s. He needs to take these pills daily.” If I had been in jail longer, I would’ve been able to, in a sense, file for the ability to get my medication. But, I wasn’t in there long enough to get my medication and start that process. I had anxiety attacks every single day. I would be in tears.

Green: The public information officer for the Washington County jail confirmed that Kade wasn’t given his medication while he was there. The officer told me it’s standard practice when someone’s first incarcerated if the medication isn’t for a life-threatening condition.

Kade stays in jail for two weeks while his family gets together the money for bail. Meanwhile, totally separately, the county is processing his application for a case manager. A few months before Kade’s sentencing…

Deborah: We got a report that said that yes, he qualified for developmental disabilities classification. So, with that letter, then we submitted it to the public defender. Then there were extenuating circumstances.

Green: Kade would’ve been sentenced to a minimum of five years in prison. But since he qualifies for a case manager, the court took into consideration that his disability played a role in how well he could understand his choices and their consequences.

Deborah: So, the prosecutor explained to us that he really did not want to prosecute Kade, because he realized that he had limitations. There were a lot of tender mercies along the way. We feel very grateful.

Green: The prosecutor declined an interview for this story, and Kade’s public defender wasn’t available. But I’ve listened to audio from all of his hearings. At sentencing, the public defender brought up Kade’s disability and his extremely supportive parents. He and the prosecutor agreed ahead of the hearing to ask for five years’ probation instead of prison time. In approving that sentence, the judge cites Kade’s youth and willingness to seek treatment. Kade qualifies for early release as well, and within three years, he finishes sex offender therapy and is off probation.

Four years later for Kade

It’s been four years since Kade was in jail. Now, he’s working part-time and shooting at the archery range every weekend. Recently, Kade’s decided to switch from the county agency to a brokerage to see if the brokerage might offer him more than the county can. Because he doesn’t get Medicaid, he can get check-ins with a case manager, but she can’t connect him to any other services. One afternoon, a brokerage case manager named Erin Wilson comes over to meet with Kade’s family.

Deborah: Hello, nice to meet you.

Erin Wilson: Nice to meet you, too! Who’s this?

Deborah: This is Ginger.

Wilson: Hi, Ginger!

Deborah: This is our official greeter.

Wilson: Hi.

Kade: Ginger! You don’t need to be nervous.

Wilson: [Laughs] Any other pets?

Deborah: No, just her.

Kade: No. I’ve wanted to get another pet. My mom and dad are just like, “Noooo.”

Wilson: [Laughs]

Deborah: Well, we kinda think that Kade needs to take care of himself first!

Green: Once they settle in to talk, Erin focuses completely on Kade. She takes notes on his goals, struggles, skills, and interests.

Wilson: My knowledge and experience comes from my caseload. So, if I hadn’t had to directly help someone find something, then it’s just kind of talking with my colleagues and researching on my own, too.

Green: Kade and his family are most interested in how Erin can help him prepare for a job. Only about a fifth of adults with I/DD hold paid jobs, often in food service or other entry-level labor. Kade’s applying to start an electrician’s apprenticeship.

Kade: I’m not worried about how physical it is.

Deborah: No.

Kade: I’m worried about getting the interview and—

Deborah: Right, right.

Kade: —passing the interview.

Deborah: So, those are the things that we are looking at in terms of: Do you have workshops on interviews? How do you interview?

Green: Deborah says that Kade overthinks things.

Deborah: He could actually interview himself out of a job.

Green: Deborah and Ron don’t want to be the ones to practice his interviewing skills with him.

Kade: If I was as comfortable as I am with my parents with the interviewer, I’d have no problem.

Green: He’s actually done a few job interviews, but his court case still follows him.

Deborah: You know, he’s been accepted, they sent him off to the lab work, and then they did the background check. And then, they dismissed him, which was pretty discouraging, because we were very upfront with everything.

Green: Annual surveys called the National Core Indicators suggest people in Oregon are pretty happy with their case management services overall. But, a few bills are pending that could change things. Two could expand brokerage services in different ways. But, one recently passed that narrows who’s eligible for case management. That means some people could actually lose what they have. Proposed federal changes to Medicaid could also affect funding. For now, county agency and brokerage representatives, self-advocates, and others across the state are doing outreach, testifying at the capitol, and waiting.

Deborah: So, I think what we know is that Kade’ll turn 25 in a couple of weeks.

Wilson: Yeah.

Deborah: And, so—

Kade: You think you know?!

Wilson: [laughs]

Deborah: Well, I always have to think. This is really the first opportunity that we’ve had to start exploring things that just wouldn’t have come up on the horizon several years ago.

Wilson: Yeah.

Deborah: So, we’re pretty encouraged.

Green: But then, Kade’s birthday rolls around. The family gets so involved in party planning that they forget Kade’s yearly window to re-register as a sex offender. On April 20th, Deborah’s gardening when she realizes it’s the last day he can go in. She drops everything and tells Kade to get to the police station. Kade rushes there, but they won’t let him in to register. It’s Saturday. They’re not fully staffed. On Monday, Ron drives him back to the police station, and he’s arrested on the spot.

[Music break]

The failure to register is his fourth felony. But on May 2nd, Kade arrives at court, and the DA says they’re not pursuing the case. Still, the arrest remains on his record. Deborah wraps up the story to me on the phone with her usual mix of no-nonsense focus and lighthearted laughing. “Maybe he’s off probation,” she tells me, “but he’s not off probation with us.”

The last time we talked, Kade had just started considering moving into an open room with some friends and away from his parents. He called it a scary and mysterious prospect, but a step he hopes to take soon, ready or not.

70 Million wrap-up

[Music break]

Miller: Cheryl Green is based in Portland, Oregon.

[Music break]

We’d love to hear about reform efforts in your communities, so please email us at hello@70millionpod.com. For more information, our episode toolkit and to download the transcript for this episode, visit 70MillionPod.com.

70 Million is an open-source podcast, so we invite you to use our episodes, transcripts, syllabi, and episode toolkits in your classrooms, organizations, and anywhere you find them helpful. You may rebroadcast parts of or entire episodes without permission. Just please drop us a line so we can keep track.

70 Million is made possible by a grant from the Safety and Justice Challenge at the John D. and Catherine T. MacArthur Foundation.

This podcast is a production of Lantigua Williams & Co. It’s edited by Jen Chien and Casey Miner and mixed by Luis Gil. Our associate producers are Adizah Eghan and Cher Vincent. Our marketing specialist is Kate Krosschell. Our staff writer is Nissa Rhee, our intern is Emma Forbes, and our fact-checker is Sarah McClure. Juleyka Lantigua-Williams is the creator and executive producer. I’m your host Mitzi Miller.

A production of Lantigua Williams & Co.

Citation: Green, Cheryl. “When Disability Requires a Different Approach.” 70 Million Podcast, Lantigua Williams & Co., July 22, 2019. 70MillionPod.com.

Pigeonhole wrap-up

CHERYL: I don’t think I can say it better than Kevin Gotkin in volume 190 of the Crip News newsletter. Kevin writes: “Happy? Disability Pride? The US Senate welcomed the month by staying up all night to pass a budget bill that would have profoundly harmful effects on disabled people’s lives, including over $1 trillion in cuts to Medicaid by 2034. [70 Million music fades] The bill now goes back to the US House for its final deliberation and vote.

Again, Disability Wrath Month feels like a more accurate response to the way ‘Pride’ can provide cover for true enemies of disability joy. Still, disability communities, famously ingenious, will find ways to braid outrage with celebration for what lies ahead.”

[lo-fi chill music returns]

The 70 Million story was my first and last foray into journalism. Big props to Oliver Baker for his expert writing guidance and editorial work on the episode and for driving me to interviews since I can’t drive anymore. Thank you to Grant Miller for driving me to Southern Oregon so my reporting wouldn’t be just in the Portland Metro area. Thank you to Patricia, Kade, Deborah, your families, your support staff, and again, the other families and workers I spoke to. You gave me your stories and your expertise.

This is all so much more fundamental than legal rights and benefits. This is about humanity and dignity. I feel like I can usually wrap up these episodes without much work, but my head is a complete swirl of anxious rage just trying to write a clever ending. I simply can’t condense my feelings and the ethical and moral violations I feel like I’m witnessing in this administration into a few sentences. So please visit the other resources like HEARD and The Marshall Project.

[lo-fi chill music fades into bright ambient music]

Every episode is transcribed. Links, guest info, and transcripts are all at WhoAmIToStopIt.com, my disability arts blog. I’m Cheryl, and…

TWO VOICES: this is Pigeonhole.

CHERYL: Pigeonhole: Don’t sit where society puts you.

Music in the episode:

Music track: Bored by Lukrembo. Source: https://freetouse.com/music. Vlog Music for Video (Free Download).

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