People with intellectual and developmental disabilities, known as I/DD, are overrepresented behind bars. We go to Oregon, where case managers translate their needs for a system where the proper diagnosis is the difference between incarceration and freedom.
People with intellectual and developmental disabilities, known as I/DD, are overrepresented behind bars. One reason is that police officers, lawyers, and correctional staff don’t always know how to meet their needs. Reporter Cheryl Green brings us to Oregon, where case managers translate their needs for a system that’s not set up to accommodate them -- and where the proper diagnosis is the difference between incarceration and freedom.
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.”
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.
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
department 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
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
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.
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.
Green: 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.
Music break
Miller: Cheryl Green is based in Portland, Oregon.
Music break
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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.
Citation:
Green, Cheryl. “When Disability Requires a Different Approach.” 70 Million Podcast, Lantigua Williams & Co., July 22, 2019. 70millionpod.com