Unsafe, Part 5: What Arizona is doing — and not doing — to stop abuse of disabled

The story was originally published in Arizona Daily Star/KJZZ with support from the USC Annenberg Center for Health Journalism’s 2022 Data Fellowship.

CORRECTION: Arizona Department of Health Services spokesman Steve Elliott said there have been no enforcement actions against the group homes, but there have been notices of deficiency. This story has been updated with the correct information.

Ryan Parrott had the best sense of humor.

“Oh, he had a laugh that was just contagious,” says 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 says.

That was not 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 says.

“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 was not difficult 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.”

Life in a group home

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, 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 says.

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.

“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 says. 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. Governor 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 yearlong investigation, the Arizona Daily Star and KJZZ analyzed 10,000 incident reports gathered by the state’s 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.

Powerless to help

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 difficult 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 says.

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 and 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 says.

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 says. “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 has 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 Elliot 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.

AzCareCheck, 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 did not 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 is not 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 says. 

“There needs to be a community of mutual care and support among everybody that is working in this IDD field because this is a much more systemic issue than any of us want to acknowledge.”

Peace at last

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 says.

“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.”

About the 'Unsafe' series

Until the 1960s, people with intellectual and developmental disabilities – including conditions like autism or Down syndrome – were regularly sent to live in institutions.

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 they live, they are 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. Listen to the series at tucne.ws/unsafe or read it in the Star this week.

Part 1: Blatant abuse: The mother of a woman with profound intellectual and physical disabilities who gave birth after being raped in a state-funded care facility shares her story for the first time.

Part 2: 10,000 incidents: Journalists Amy Silverman and Sam Burdette examined 10,000 incident reports filed in 2019 and 2020 and discovered hundreds of claims of sexual and physical abuse of people with intellectual and developmental disabilities and more than 3,500 instances of alleged neglect.

Part 3: Unaccountable: The abuse of a 4-year-old boy with IDD was caught on camera, and his caregiver confessed to police, but the case is among hundreds that the state could not prove.

Part 4: Sex ed and IDD: A pilot program of Special Olympics Arizona helps athletes with IDD navigate healthy relationships.

Part 5: What next? Four years after the rape of a woman at Hacienda HealthCare launched reforms, critics say the state is still not doing enough to protect people with IDD from abuse.