by Amy SilvermanPublished: Nov. 28-Dec. 2, 2022
Throughout history, people with intellectual and developmental disabilities — including conditions like autism or Down syndrome — were regularly sent to live in institutions, away from family and society.
That began to change in the 1960s. And in 1999, the U.S. Supreme Court ruled that people with IDD should live in the community whenever possible.
Today, fewer than 200 Arizonans with IDD live in an institution. The remaining 45,000 or so who receive caregiving services and other government benefits live on their own, with family or in small settings, like group homes.
But no matter where people with IDD live, they continue to be at risk. An investigation by KJZZ and the Arizona Daily Star found that physical and sexual abuse, as well as neglect, can occur anywhere — and often, nothing is done about it.
Hear Amy Silverman discuss the project with host Lauren Gilger on The Show
Part I: Blatant abuse
Listen to Part I
Mildred never thought her daughter would be a mother.
Then the phone rang on a Saturday morning. An unfamiliar woman identified herself as an employee at Hacienda HealthCare, the Phoenix facility where Mildred's daughter had lived since she was 2 years old.
"Oh, Mildred, I just wanna let you know, did you know you're a grandma?"
"I said, 'What are you talking about?'"
"And she said, 'Yeah, she had a baby boy.'"
Mildred remembers yelling, but almost four years later, she's not sure of exactly what she said. She does recall one thing very clearly.
"I threw my phone across the room."
Hear Amy Silverman's extended interview with Mildred
Days later, on New Year's Eve 2018, news broke that a woman with profound intellectual disabilities had given birth at a long term care facility.
Within weeks, an employee was arrested and charged with sexual assault. He's now in prison. Mildred and her family have settled lawsuits against Hacienda HealthCare and the state.
But things will never be settled for Mildred.
On a warm day in fall 2022, the older woman sits in the conference room of her lawyer's north Phoenix office. KJZZ News and the Arizona Daily Star are using her first name only, to protect her privacy. This is the first time she's spoken to a journalist.
Mildred wears a blue T-shirt and jeans, her salt and pepper hair held back by a sparkly headband. Her eyes fill with tears as she talks about her daughter, the fourth of seven children.
The girl had her first seizure when she was 2 weeks old. Mildred knew something was wrong, but she didn't know what to call it.
"I would be going to her, taking her to her appointments, and tried to explain to the doctors, the nurses, what she was doing, turning blue, shaking, her eyes rolling up," she said.
Mildred and her family live in the San Carlos Apache Indian community, several hours from any big health care facilities. Eventually, the family was sent to Phoenix, where the little girl had a seizure in front of a doctor, who was then able to diagnose her.
"I kept her home as long as I could," Mildred said. "But then she started developing respiratory problems."
The doctors convinced Mildred and her husband to put the girl in a state-funded care facility in Phoenix called Hacienda HealthCare. She was just 2 years old. Mildred describes it as the "hardest day of my life."
"I was reassured that she'll be taken care of, they'll care for her. And I did say that to them, you know, I cared for her as much as I could at home. So now you take care of her."
The girl grew up at Hacienda. Mildred was happy with her daughter's care. She kept a close eye on her when she visited, checking for sores, bruises, even ear wax. She and her husband requested that their daughter never be left alone with a male caregiver.
The family visited on Christmas Eve 2018. Mildred noticed her daughter's feet were swollen. She mentioned it to the staff. She called the next day and was told the younger woman was scheduled to see a doctor.
"And that was it. I never got a call back saying why her feet were swollen until the 29th."
Her grandson's birthday.
Mildred rushed to Phoenix.
"That's where that part of our life changed."
Her daughter was recovering in the hospital. The little boy was nearby.
At first, Mildred wasn't sure even wanted to see the infant. She prayed about it, then went to the intensive care unit, where the baby was being weaned off of his mother's seizure medications.
"He was just laying there all small, facing the other way, we just saw the back of his head. And we saw him, talked to him in Apache, apologized to him for how he came, but told him that he's ours. I said, He's going home with us. He's mine. This is my flesh and blood. No matter how he came, he's my flesh and blood."
Mildred pulls out her phone to show photos of a beautiful, healthy child with big eyes and dark hair. He loves spicy food. He's always surrounded by family.
"He calls all of us mama. Me, my older daughter, the aunties."
From his youngest days, Mildred has brought the boy along to visit his mother, who now lives in another care facility in Phoenix. He calls her mama, too.
Mildred worries about the day her grandson finds out about his father.
"Every day, every morning, every time I look at him."
In the months following the Hacienda HealthCare incident, advocates called for reform in Arizona facilities that care for people with intellectual and developmental disabilities, or IDD.
But the reality is that there are fewer than 200 Arizonans with IDD living in institutional settings. Another 45,000 live in the community – with family, on their own, or in small group home settings. They qualify for health care, job training, recreational programs and caregiving services.
No matter where they live, Arizonans with IDD are not safe — not according to reports collected by the state, which document everything from a scratch to a rape. An analysis by KJZZ and the Arizona Daily Star of more than 10,000 "incident reports" made to the Arizona Division of Developmental Disabilities in 2019 and 2020 revealed thousands of charges of neglect and hundreds of serious physical and sexual abuse allegations. Often, there's no resolution to these complaints.
Among the incident reports is one documenting the birth of a full-term baby boy to a 29-year-old woman with a seizure disorder and needs so significant she cannot walk, talk or care for herself in any way. She does respond to sound and light, making it even harder to consider that she was likely raped multiple times by a man caring for her.
Whether in an institution charged with providing constant oversight or out in the world, bad things are happening to some of the state's most vulnerable residents. Family members, advocates, medical personnel — just about anyone close to people with IDD already knows this. But it took the rape at Hacienda HealthCare to get the world's attention.
Even that hasn't resulted in much change. A task force examined the problem for years, a few laws were passed, some funding was increased. But almost four years later, a public education campaign still hasn't been put in place. It's almost impossible to find detailed information about a potential living setting for a loved one. Family members and guardians are kept in the dark about even the most basic information, something Mildred said happened to her many times.
Her best advice to other families: "Ask questions."
"Ask questions, just basically, How she's doing? What is she doing today," Mildred said. "Asking how they are as a human being."
Today, Mildred's daughter lives in a state-run facility in Phoenix. It's smaller than Hacienda, tucked into an inner city neighborhood.
She really likes quiet, her mom says.
"When we're there, we're loud," Mildred said, laughing. But it's important to her that her daughter be with her people and around her family's traditions.
"I sing to her in Apache, and I told the supervisor there at the home to play her some traditional music," she said. She bought her daughter a fancy television set and asked the staff to put in Wi-Fi.
"So they play the YouTube and they get that traditional music going on, even the crown dancing, what we do."
Earlier this year, Mildred's daughter came home for a visit. Mildred and her husband, Joe, had been chosen as godparents for a young woman in the community, and there was a big celebration. The older woman's eyes shine as she recalls sending a traditional dress for her daughter to wear.
By the time the van made it to the reservation, the ceremony was over.
"So she couldn't hear any of the music, but she was home with us and we were just all happy. Family just gathered around the van and want to take a peek at her. And she was kind of like dozing off."
The family was together. They took pictures. Mildred's daughter was never taken from the van.
"I told them, 'I don't want her getting off.' It was dusty that day. I don't want her getting sick, you know? So she stayed like maybe for two hours, and they took her home, and we were just all waving at the van," she said.
"She made it home to us."
Part II: 10,000 incidents
Hear Amy Silverman and Sam Burdette talk about the data in Part II
An analysis of more than 10,000 incident reports collected by the state of Arizona in 2019 and 2020 reveal hundreds of claims of sexual and physical abuse of people with intellectual and developmental disabilities — and thousands of instances of alleged neglect.
The Arizona Daily Star and KJZZ spent a year examining the data, obtained through a public records request. Although the reports were sometimes heavily redacted or incomplete, they painted a picture of desperation among caregivers, family members and — most importantly — people with intellectual and developmental disabilities, often referred to as IDD.
The main takeaway: Abuse can take place anywhere, and the perpetrator can be anyone.
In Arizona, about 45,000 people with IDD receive services from the state. They are referred to as "members."
Experts caution that most instances of abuse and neglect aren’t documented in the first place. The U.S. Inspector General found in a 2021 study that 99% of incidents in group homes were never reported.
Arizona officials would not comment on any specifics.
In a statement, a spokesperson for the state wrote:
“The DES Division of Developmental Disabilities (DDD) is committed to ensuring the health and safety of its members, and the quality of their care. DDD’s process is to review all reported incidents and investigate those that are quality of care concerns through its Quality Management Unit. DDD also works with providers to remediate identified issues. Health and Safety visits are conducted by clinical quality management staff for reports of abuse, neglect or any situation that indicates a potential for harm to the members in a residential setting (however, if an incident occurs in a member’s own home, DDD staff would report to DES Adult Protective Services or the Department of Child Safety as required). Appropriate measures are taken to ensure the health and safety of a member.”
Among the incident reports were allegations of neglect, including people with IDD missing medication doses, living in filthy conditions and being ignored by caregivers. In one neglect case, a person with IDD went from weighing 130 pounds to 73 pounds in a six-month time period.
Reports of sexual abuse ranged from inappropriate comments to allegations of rape.
And there were hundreds of claims of physical abuse serious enough that police officers had to get involved and/or medical care was required. Among them:
- A state-paid caregiver pushed a person with disabilities head first into a fish tank after an argument over a TV remote control.
- The stepfather of a person with disabilities was arrested for sexual abuse after the member said, "dad," "ouch," "hurt," "no."
- A person with IDD showed up to school, obviously having been beat up. When the mother tried to call the group home, no one answered. The group home didn’t report the incident or speak with DDD staff till after the mother reported the incident. The staff member was terminated.
Those claims were substantiated. Many more were not — or had not yet been closed at the time the records request was fulfilled.
According to the data, the perpetrator can be anyone — a medical professional, a teacher, therapist, friend or neighbor.
"You know, I wish I could say there's a category of person that we have to really watch out for, and then we would know what to watch out for. But it's pretty much everybody," said Nora Baladerian, a California-based clinical psychologist and creator of the Disability Without Abuse Project.
"I like to say that service providers, including psychologists, psychiatrists, counselors, of course would never, ever abuse a child or an adult with a disability. But I can't actually say that and do it with a straight face."
More than a third of the sex-abuse allegations involved a family member. From one report: "Mother kept lifting member’s gown while two staff were in the room and she was referring to his penis as his 'little animal,' and she kept stating that she was afraid something was going to happen to his 'little animal.'" She also was caught touching and/or cleaning his genitals and saying, "You better tell me you love me or I am going to spank you."
And while abuse can take place in just about any setting, group home employees account for about half the physical abuse allegations, and a fifth of the sexual abuse claims — even though only about 4,000 of the state’s 45,000 DDD members live in such settings.
Baladerian tells the story of a friend of hers whose sister has an intellectual disability. She’s non verbal and lives in a care facility. She had been acting different, kind of cranky, withdrawn — but Baladerian’s friend didn’t know why.
"One day she was on the freeway, and the hospital called and said, 'Hey, we got some lab results back from some of the tests that we did on your sister. And, um, she has gonorrhea,' and my friend just about drove off the freeway."
But even a sexually transmitted disease wasn’t enough to substantiate some reports of alleged abuse in Arizona.
One DDD member was diagnosed with herpes. She’d never been diagnosed with it before, and staff couldn't figure out how or when she contracted the virus. Police closed the case due to lack of evidence.
Another DDD member was treated for gonorrhea and chlamydia. That case was also closed due to lack of evidence, although there was suspicion of "an unknown female that 'touched' the member, and the member refuses to discuss the incident."
Allegations of sexual abuse involve everyone from classmates to friends to neighbors.
"While member was doing yard work at his in-law’s house, he went with an adult male neighbor to his home and had unprotected sexual intercourse with a woman in her 30s while two adult males and two adult females watched and/or participated."
Sometimes, it’s another person with IDD.
In one instance, a DDD member stated a man exposed himself to her and made her perform oral sex on him. The two were separated and the man was later arrested. Charges were dismissed because the man was determined to be "incompetent," which is legal speak for being unable to participate in one’s own defense.
If nothing else, these reports offered a glimpse into a world that is typically closed to outsiders:
- A DDD member and staff got into an argument. Staff hit the member with a backpack and called the member a "bitch." Staff verbally threatened the member, went to her car to get a baseball bat and brought it into the group home. Another staffer intervened; the member was not hit with the bat. The staff member was terminated.
- In attempting to get a DDD member to eat breakfast, a group home employee asked, "Are you gonna act like a cry baby today? You're 51 years old, for Christ sake." The member covered his face and began to cry. Staff yanked the member's coloring book out of his hand and used his palm to push the member's forehead back. Later, staff pushed the member's head back with force when giving medication and called the member "a little sh--." The member was later found shaking and was taken to urgent care. He was discharged with "no concerns."
- A caregiver at a day program convinced a DDD member to send them nude pictures, then threatened the member using the photos. The caregiver posted the images to the day program's website and to Facebook, and also shared them with friends.
- A DDD member informed his mother that three staff members had taken him to the restroom and touched their genitals in front of him. An investigation revealed the member was displaying more sexually oriented behavior in the weeks leading up to the alleged incident. The member had been smelling chairs where female employees recently sat, claiming he could smell their underwear. The member also would randomly say "vagina" and "penis." A detective reported that information provided to the police department was vague and said the case was officially closed. The investigation concluded that no incident ever occurred.
Again and again, families interviewed for this series said they have been unable to get copies of incident reports involving their loved ones.
And then there are the people with IDD who don’t have family members looking out for them.
Sam Burdette analyzed the data for this story. Jill Ryan and Sarah Trim contributed to this story.
Part III: Unaccountable
Listen to Part III
WARNING: This story contains graphic language some audiences may find disturbing.
On a winter night in January 2021, Michele stopped for gas. As she was waiting, she pulled out her phone to check the nanny cam.
A cartoon blared in the background, it was impossible to hear any voices. But Michele could see her 4-year-old son jumping from couch to couch in the living room of their West Valley home. (She asked that her real name not be used to protect her family.)
Michele's son is autistic, one of 45,000 Arizonans who qualifies for services from Arizona's Division of Developmental Disabilities — health care, job training, recreational programs, therapy and babysitting, referred to as respite care. A state agency had sent a woman in her early 20s over during the holidays to provide respite. Things had gone OK, so when Michele needed to take her older daughter to gymnastics, she reached out again to the young woman.
As Michele watched, the caregiver sat on a couch with her back to the camera, and did — something — with her shirt.
"At the time, I wasn't really understanding what was going on," Michele said. "I thought she had a sweatshirt on and maybe lifted her sweatshirt up to show him a Disney character or something."
As Michele continued to watch, it appeared that the caregiver was exposing herself to the little boy. After a few minutes, they both disappeared down the hall. Michele rushed home.
"I walked her to the door, locked the door and then called the police," she said.
As calmly as she could, Michele asked her son what happened. She says he told her that the caregiver put milk on her breast and asked him to suck it. Michele videotaped the boy telling her about the incident.
Michele: "A little bit of milk. On where?"
Son: "On her boobie."
Son: "Cause the taste, good with milk on it."
Michele: "And she, what?"
Son: "It tastes good with milk on it."
Michele: "Did you try that? Did she tell you to? Huh? OK. Did she ask you to?"
Son: "Uh, yeah, and I didn"t wanna."
Michele: "Did you tell her no?"
Son: "Her likes it."
Michele: "She likes it? Is that what she told you? All right, buddy. Thank you."
A Maricopa County Sheriff Office's detective interviewed the caregiver a few days later.
In a recording of the interview, the woman denied putting milk on her breasts, but she did admit to holding up her shirt and letting the 4-year-old touch her. He'd poked and grabbed her in the past, which is common for children, particularly a kid on the autism spectrum who struggled with boundaries.
"He's always like, has grabbed me, you know, my breast, and I'd thought nothing of it," the caregiver said. "I was like, oh, this is, you know, he doesn"t know what he's doing."
The caregiver told the detective that, in the past, she'd told the boy to stop.
"I don't know, this time it was just different," she said.
"Right. Yeah," the detective said. "Tell me about why this time was different."
The caregiver continued: "Well, I don't even know. Like, I hate to say, but I don't know if I was horny. Like I don't know. Cause like, I don't watch porn. I"m a clean girl, you know, I've never done stuff like that. I'm even a virgin. And I don't know, it's just like, maybe like the continuous ask, or maybe like the touch, too."
She said the boy lifted her shirt.
"I just like, left it lifted," she said. "I was like, OK, whatever. Just touch it. And I know that's absolutely wrong, but that's what happened. And then he just kept wanting to play with them, and then I let him."
Driving home, the caregiver got worried.
"I was just thinking, like, 'Oh my God, what did I just do?'" she told the detective. "I could, you know, like, go to jail for this."
Michele's son had been potty trained, but almost immediately he began having accidents. He still does. He also now routinely has violent outbursts. His big sister, now 11, is also struggling, blaming her mother for not protecting him. Michele herself has had challeges with anxiety and suicidal thoughts.
The detective gave the evidence to prosecutors — the nannycam video, an interview with the child and the caregiver's confession. But the Maricopa County Attorney's Office declined to prosecute.
Rachel Mitchell wasn't the county attorney when this happened. She is now. Mitchell wouldn't comment on this case specifically. But she did say it's hard to prosecute when a person with IDD is involved because, often, they aren't believable or aren't able to testify.
"You know, it's really unfortunate because we know that a higher percentage of people that do have intellectual developmental disabilities are victimized," Mitchell said.
She says there's also a very high bar to prove reasonable doubt in court.
"And yet you may have cases where there's quite a lot of evidence, certainly evidence that would be sufficient, that you as a parent, for example, would never want to hire this person," Mitchell said.
The report about the 4-year-old boy is one of more than 10,000 incident reports taken by the Arizona Division of Developmental Disabilities, analyzed by the Arizona Daily Star and KJZZ News. There were hundreds of allegations of physical and sexual abuse that could not be proved.
Jon Meyers heads the Arizona Developmental Disabilities Planning Council, which advocates for people with IDD. He says this kind of thing happens all the time.
"You can have a pattern of accusations against you and, perhaps there just isn't enough evidence to substantiate them," Meyers said. "And you can move from one employer to another and get hired. And if, you know, if you get accused again, you can move from that employer to yet another."
Michele's son's caregiver did not respond to a request for comment. Shortly after the incident, she resigned her position, as well as her other job as a preschool aide for kids with disabilities. But without a mark on her record, she could easily get hired again.
Michele feels let down by the whole system. Especially the fact that despite all the evidence, her son's caregiver walked away, while her family still struggles with trauma.
"I"m glad my son is safe now," she said, "but what about the other countless families that have yet to meet this, this demon? You know, like I just, I don't get it."
Michele doesn't leave her son with a caregiver anymore.
Part IV: Sex ed and IDD
Listen to Part IV
Unlike many recent high school graduates, Alex Crawford knows exactly what he wants out of life. He wants to go to college to learn how to make movies. He wants to live on his own. And someday, he wants to have a girlfriend.
Instead, he spends his days at the Opportunity Tree, a center for adults with intellectual and developmental disabilities in Avondale, not far from the home he shares with family. He has a best friend he hangs out with, but no love interests.
On a recent Wednesday afternoon, a dozen or so people gather around a table in an airy open room, decoupaging balloons as part of an art project. Several staff people sit with them. Most exchange friendly banter, some participants wander away to relax on a couch or chat with a friend. Crawford takes a break to talk about his life. He’s tall, with short dark hair and a big smile, despite his worries.
"Ever since I turned 21, it's just, it's just, everything's so different," he said. "I have autism and everything goes by pretty fast and I don't know, I don't know how strong, I don't know. I don't know if I'm strong enough to handle it."
Crawford may have a disability, but he’s still an adult.
"I'm still a person. It's just my brain just works in a different way," he said. "I'm trying to be like everybody else a little more, you know, like going out places, like being in relationships, getting a job, and um, learn to be more confident. It's what I've been trying to do. But it's hard if you keep, if you just keep doubting yourself."
That’s why people like Raylah Pillar think sex education is so important. She heads the day program Crawford attends at the nonprofit Opportunity Tree.
"A lot of it is not knowing what is healthy and just being curious … and not knowing how to ask for consent or know that you need consent or know that you're even doing something that requires that because nobody's even talked to them about it," Pillar said.
As part of an KJZZ News/Arizona Daily Star investigation, journalists looked at hundreds of reports of sexual abuse taken by the state of Arizona in 2019 and 2020. Most alleged perpetrators were paid staff or family members, but there were also reports of abuse by neighbors, friends, co-workers and romantic interests, including peers with and without disabilities.
This is no surprise to advocates, who know that more and more adults with conditions like autism and Down syndrome are living, working and looking for love in the community. That’s exactly why they want people with IDD, as it’s called, to participate in sex education programs.
In addition to learning about consent, sex ed also means learning proper vocabulary for body parts and knowing how to explain when something bad has happened.
Gianna Zola is a manager at Special Olympics Arizona. She’s recruited local athletes to participate in a pilot program called "Understanding Me, The Athlete's Guide to Navigating Healthy Relationships."
That’s right. Special Olympics is training some of its athletes in sex education.
The nonprofit best known for sponsoring athletic competitions has an entire initiative focused on health. Zola says there was no one event that sparked the desire for a program about health and relationships.
"Special Olympics is a trusted brand," she said. "It’s just over the years, having parents call or athletes call and maybe disclose something or ask questions and us not really having somewhere concrete that we could direct them to."
It’s been rewarding, Zola said, "being able to create that ourselves and then also build the network and the relationships with different organizations in the community to make sure that the services that they're offering are friendly to people with disabilities."
The pilot program began in 2019. A half dozen athletes have participated. Zola says their insights have been invaluable.
"There's so many questions that have come up in focus groups, that have come up in our virtual classes that we've hosted, questions that we wouldn't necessarily think of, but really make us think," she said. "There's a lot of excitement around learning about boundaries and what it means to have your own boundary and have that boundary protected and what happens if someone crosses that boundary that you've set — whether it's someone you know in a romantic relationship with you or a friendship or even a coworker or boss."
Among the questions athletes have asked:
- "What should I do if my ex won't leave me alone?"
- "Is it OK for men to date men?"
- "Where do you get a pregnancy test? And then once you get it, how do you take it?"
- "Is verbal abuse a part of domestic violence?"
Paul Bennewitz is a participant in the pilot program. He’s 53 and has competed over the years in track and field, swimming and basketball. He lives with his family in Tempe and describes himself as "mentally challenged."
Bennewitz doesn’t think it’s fair that students with disabilities are often excluded from sex ed.
"All the regular kids get to take sex education," he said. "But it's not offered for people with developmental disabilities."
Vanessa Robles is another athlete helping to develop the program. She’s 41 and hasn’t dated since high school, when she had an experience that she says "wasn’t great." She’d love to be in a relationship again — if it’s healthy.
"I'm looking for somebody that would, I could joke around with," Robles said. "I'm kind of a jokester in a way, in a playful way. Not like mean bullies and, and looking for who will adore me, being adored and have fun with."
The lack of sex education for people with IDD isn’t only a problem in Arizona. Nora Baladerian, a California-based psychologist and the founder of the Disability Without Abuse Project, says it’s a challenge everywhere.
"It's a huge issue in that it's very rarely done. And I think that everybody needs sex education, but it should include [a discussion about the difference between] wanted and unwanted sex."
After years of working on the curriculum, Special Olympics Arizona still isn’t quite ready to share it. Part of the problem is that there is a wide range of intellectual and developmental disabilities, and it’s challenging to modify the curriculum for athletes who communicate in different ways.
A person who lives in a group home with a lot of support for example, might have a different set of needs — and questions — than someone like 21-year-old Alex Crawford, who feels he’s ready to live on his own.
"I kind of wanna live by myself sometime. And then maybe I'll have my girlfriend move in with me," Crawford said.
He doesn’t have one now, he adds quickly. But someday. "Maybe I'll have my girlfriend move in with me so that way I won't be alone."
Part V: What next?
Listen to Part V
Ryan Parrott had the best sense of humor.
“Oh, he had a laugh that was just contagious,” said his mother, Molly. "Some of the things that would make him laugh were like people blowing their noses or passing gas. He loved the sound of a soda pop can being tapped. I have one here if I can demonstrate, but we would do this and then pop it open and that would just send him into a load of giggles, just gut-busting giggles."
When he was born two months early in 1980, Molly knew something was wrong. But it was another six months before her baby was diagnosed with cerebral palsy.
"It was recommended that we put him in an institution, and that didn't sit right with us, so we kept him at home and our family was built around him and his needs in doing what was in his best interest and keeping him happy," she said.
That wasn’t always easy.
"Ryan was like a 2-month-old infant, physically, so he couldn't hold his head up. He was nonverbal. He couldn't sit up on his own, he couldn't feed himself. He required a lot of positioning to keep his skin from breaking down. His food had to be pureed and fed to him; he loved to eat," Molly said.
"He had to be diapered and dressed and bathed and someone to brush his teeth. He was total care. So it did require a lot of lifting and positioning, and the physical aspect, but it also required a lot of human compassion and a lot of emotional support for him and you know, stimulating his mind like, like the young adult that he was. It just required an awful lot."
Molly says it wasn’t hard to know if her son was unhappy.
"He would give us the opportunity to read his facial cues, like — starting to pout or stiffen his arms and legs a little bit. But if that went unattended, he would start whining and if that didn't resolve ... then he would start screaming and crying."
But it was also easy to tell if he was pleased.
"If he wanted something or approved of something, his eyes would widen and he would smile. So we could ask him things like, 'Would you like some yogurt?' And he would smile real, real big cause he loved yogurt. Ask him if he wants any more pumpkin pie, and that would get him really smiling."
When Ryan was 22, the Parrotts placed him in a group home, a modern-day alternative to an institutional setting in which no more than three or four people live in a house with full-time staff. The idea is to keep people with intellectual and developmental disabilities, or IDD, as it’s called in the community — near family and others who can keep an eye out for their safety and help them lead good lives.
“We opted to have him in a group home that was close to our house so that we could maintain contact and make sure that things were going well and help the people that worked with him to understand how important it was to treat him as a complete and total human being,” Molly said.
It didn’t always work out that way.
"There were low points in the first group home. The caregivers there were keeping him doped up on Sudafed, getting him to an overdosed state where he ended up in the hospital and having seizures, and we weren't notified of that until after the fact. And that was not good for his health, nor was it good for, for us as his, mom and dad," Molly said. "The second group home, that went really well until the company sold out to another company. And under the new company that ran that group home, he ended up with black mold in his G-tube, ended up in the hospital."
In that home, a caregiver hit him so hard in the chest he had to be hospitalized; he was sprayed in the mouth with a showerhead as a punishment.
And in the third home, the Parrotts fought with the owners of the facility for the right to see their son at all.
“We were restricted from seeing him and going to his doctor appointments and being any part of his life,” Molly said.
Instead, they visited Ryan at a day program he attended — which is how they learned that his weight had gone from 88 to 64 pounds.
This kind of abuse and neglect has gone on for decades in Arizona, but it was not until 2018, when a woman at a care facility in Phoenix gave birth to a full-term baby boy, that anyone outside a small circle of families and advocates really paid attention. This led to calls for an overhaul of the system designed to protect some of Arizona’s most vulnerable residents. Gov. Doug Ducey appointed a task force. Lawmakers approved funding increases. State officials made charts — and promises.
But years later, caregivers are still poorly trained and underpaid. One of the hallmarks of the task force, a public awareness campaign, has not been implemented. And families are begging for help.
Earlier this year, several parents spoke before the state Senate Health and Human Services Committee. They talked about staff having sex with people with IDD, of caregivers leaving bruises on their charges, of staff shooting meth at work.
"One night staff surrounded a resident in the living room and asked him to dance naked while they egged him on and laughed at him," one mom told the committee.
“As I get older and my husband gets older, we're scared to death about what's gonna happen to us when we leave this earth,” another said.
In a year-long investigation, the Arizona Daily Star and KJZZ News analyzed 10,000 incident reports gathered by the Arizona Division of Developmental Disabilities in 2019 and 2020. DDD is charged with providing care for more than 45,000 Arizonans who qualify for services. Among the reports were hundreds of allegations of sexual and physical abuse, and thousands of reports of neglect.
The documentation is far from complete and the reports were heavily redacted. But the data still show how dangerous life can be for people in Arizona with IDD.
DDD would not comment on Ryan Parrott or any other specific DDD members or their cases.
But in a statement to the Star and KJZZ, the agency said:
"The DES Division of Developmental Disabilities (DDD) is committed to ensuring the health and safety of its members, and the quality of their care. DDD’s process is to review all reported incidents and investigate those that are quality of care concerns through its Quality Management Unit. DDD also works with providers to remediate identified issues."
The statement said clinical quality management staffers conduct health and safety visits if there are "reports of abuse, neglect or any situation that indicates a potential for harm to the members in a residential setting (however, if an incident occurs in a member’s own home, DDD staff would report to DES Adult Protective Services or the Department of Child Safety as required)."
The division is working to implement a pilot program that monitors group homes by Jan. 1, the statement said.
Ryan Parrott died from natural causes in early 2020. Molly asked the state for copies of his reports. Even though she was her son's guardian and even though he had died, she had to go to court to get that information.
The records documented allegations of abuse and neglect over several years. Only the incident in which Ryan was hit on the chest was substantiated. The rest were not, though a leg wound from a poorly fitted wheelchair, extreme weight loss and other concerns were noted. The reports are heavily redacted, making it hard for Molly to know exactly what was going on.
"It seemed as though they were not taking into consideration our duties as guardians and, you know, us being allowed to be a part of Ryan's life, let alone that we were his parents and we knew him better than anybody," she said.
In fact, advocates say the lack of transparency is one of the system’s biggest deficiencies, even four years after the rape at Hacienda. Members of independent oversight committees charged with protecting members of the IDD community say it takes months to get answers — if they get them at all.
Kin Counts is the parent of an adult son with autism and a member of the committee that oversees the eastern portion of metropolitan Phoenix. The committee sees incident reports of possible abuse and neglect in that area.
"It is very heart wrenching to read them because things that nobody can imagine actually happens to our members," she said.
But Counts says even worse is feeling powerless.
"We are not allowed to assess the details. We can ask, but most of it is said, OK, it's been done," she said. "And that's all we get. We do not know exactly what is carried on."
Since the rape at Hacienda HealthCare, there’s been a lot of talk about providing more information to the public. But that’s not happened.
The Division of Developmental Disabilities still offers no specific data about their inspections of group homes.
The Arizona Department of Health Services, charged with inspecting facilities, does not list a single enforcement action against any of the hundreds of group homes on its Az Care Check site. Although there have been no enforcement actions, says Steve Elliott, a spokesman for DHS, there were notices of deficiency. But Elliott says a computer glitch has prevented the agency from posting the notices of deficiency on the Az Care Check site. Elliott did not respond to a request to interview DHS director Don Herrington.
Az Care Check, designed to track public health licensing, does list enforcement actions taken against nursing homes, assisted living facilities and other categories — making the group home section misleading. There’s nothing posted to say that there are no enforcement actions; put the name of a group home in the field, and it appears the place has no black marks against it.
Elliott didn’t respond to a question about that, either.
Desperate to have eyeballs on their loved ones, many families have turned to video footage as a solution. Some in the advocacy community are concerned about the civil liberties of people with IDD, saying their every move should not be documented. Others say the cameras are pointless since they are only posted in communal settings, not private places like bedrooms or bathrooms, where abuse often takes place.
In one of the 10,000 incident reports analyzed for this story, a woman with a developmental disability tells staff at her care facility that she was raped by a male caregiver. There were no cameras in her bedroom or bathroom, but a hallway camera shows the man emerging from her room around 4 a.m. with an armload of sheets.
According to the incident report, the man denied raping the woman. However, he said, he had been masturbating in her bathroom.
Later, he again denied the rape to police, saying that he changed the sheets after she soiled the bed. After the police interview, he called to add that he had masturbated in her bathroom.
A rape kit detected semen. A DNA test was done — but the results are redacted from the police report. The Maricopa County Attorney’s Office declined prosecution. It isn’t clear why. Neither the alleged victim nor the perpetrator could be reached for comment.
Government oversight and transparency are important, says Raylah Pillar with Opportunity Tree, a nonprofit that serves people with disabilities.
But another key piece of keeping people with IDD safe is building a sense of trust.
"There needs to be that culture of believing people and empowering people and encouraging people to speak up when something is wrong. Whether that is an individual who is experiencing abuse, whether that is another staff member that is suspicious that something might be happening," Pillar said.
"There needs to be a community of mutual care and support amongst everybody that is working in this IDD field because this is a much more systemic issue than any of us want to acknowledge."
Molly Parrott takes comfort that, finally, Ryan was in a good place when he died. Her perseverance paid off.
"The last care home that he was in was absolutely the best. They doted on him. They kept him happy, they fed him anytime he wanted. They wouldn't leave him isolated in his room. He was a part of the household. He was part of a group of people that became more like family and friends to him than ever before. They really looked after him and kept him happy, which is all we ever really wanted, was to keep him happy, keep him healthy," she said.
"It was the little things in his life that he liked. And it's not hard. It's not hard to open up a soda pop can, it's not hard to give him a key ring full of keys to play with. It's not hard to blow your nose for him, It's not hard to take him for a ride on a bumpy road.”
If Molly could tell the world one thing about Ryan — and others like him?
"I would like people to know that even though a body may not function normally as everyone else's does, that there is still an emotional person inside that body, and they want to be treated with compassion and respect and like a real friend."
EDITOR'S NOTE: This story has been updated to correct what Arizona Department of Health Services spokesman Steve Elliott said about enforcement actions. Elliott said there have been no enforcement actions against the group homes, but there have been notices of deficiency.