The incident has alarmed other residents and sparked a debate about safeguarding vulnerable people in the healthcare system

On a cloudy afternoon, Karina Cesena is sitting on a wall outside Hacienda HealthCare in south Phoenix. She’s probably craving a cigarette, a habit she’s picked up since her daughter, Jazzmyne Morris, suffered brain damage in a severe asthma attack four years ago. Cesena is wearing a Mickey Mouse hoodie and orange pyjama bottoms. She’s been sleeping in her daughter’s room for days, she says, ever since she heard that another Hacienda resident, who has been incapacitated for 26 years, gave birth to a baby boy on New Year’s Eve.

The woman’s name has not been released and available details are sparse. The woman is 29 and a member of the San Carlos Apache tribe, whose reservation is about an hour and a half south-east of Phoenix. She has lived at Hacienda since she was three, non-responsive as the result of a near-drowning.

And she is a new mother. Although her medical condition requires round-the-clock care including bathing, dressing and checking for pressure sores, it’s possible no one noticed or documented the physical changes in the body of a 112lb woman.

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On Saturday John Micheaels, a lawyer for the woman’s family, said she was not in a coma but has “significant intellectual disabilities” and does not speak but has some ability to move, responds to sounds and is able to make facial gestures.



“The important thing here is that contrary to what’s been reported, she is a person, albeit with significant intellectual disabilities. She has feelings and is capable of responding to people she is familiar with, especially family,” he told the Arizona Republic newspaper.

Authorities have announced no suspects and a Hacienda spokesman, David Leibowitz, refused all comment. “There simply isn’t time to do interviews, so we’ve turned down all requests,” he wrote in an email. Hacienda’s chief executive, Bill Timmons, has resigned, and on 16 January the state gave Hacienda two weeks to put a third party in charge of operations.

DNA samples are being taken from staff. A former county attorney has been called in to lead an investigation.

Advocates, state agencies and elected officials are trying to figure out how the cracks in the system got so big that this woman and her baby slipped through them. Struggling to find other states to use as models for reform, leaders in Arizona are having difficulty assuring families their loved ones are safe.

Cesena first heard what had happened when she saw a headline on a television at the Ronald McDonald House, where she was staying. Now she leaves her daughter’s side to smoke, to buy cheese and coffee and to talk to as many reporters as she can. At first she wants to trade her story for a link to her GoFundMe page, explaining she’s desperate to get Morris out of Hacienda and needs money to do so. When she hears there’s no guarantee of that, she talks anyhow.

“Let’s catch this fucker,” she texts, offering to meet outside the facility.

From the street, Hacienda looks shabby but well-kept, a complex of ageing stuccoed buildings with red-shingled roofs and portables added on. This is a rough part of town but a beautiful one, abutting South Mountain, close to Sky Harbor airport.

There’s a park across the street and near-constant comings and goings, as staff change shifts and visitors arrive. Cesena says there has definitely been an increase in traffic in the last couple of weeks. She says security was always lax. “I used to walk in, walk out,” she says; they didn’t ask her to wear a badge. Even after the birth, she says, she walked right past police detectives who didn’t ask for ID.

Last year, the Arizona legislature defeated a measure that would have required video cameras in facilities like this one. Jon Meyers, executive director of the ARC of Arizona, a state chapter of a national organization that advocates for people with intellectual and developmental disabilities, did not support the measure, citing privacy concerns.

“You can’t put a video camera everywhere,” Meyers says. “This is a little more nuanced than that. We have to be more creative. We have to recognize – and I hate to say this – we are never going to 100% prevent these things from happening.”

Facebook Twitter Pinterest Karina Cesena attends to her daughter, Jazzmyne Morris, who is a resident at the Hacienda HealthCare home in Phoenix, Arizona. Photograph: Courtesy Karina Cesena

But, he says, Arizona can do much better. Earlier this month, Meyers got in touch with the national office of the ARC, asking for a list of places that keep clients with intellectual and developmental disabilities safe. Ariel Simms, a senior program manager in Washington DC, wrote: “I’m not aware of any state that could serve as the model for other states in this area. Many, like Arizona, are in the process of recognizing this as a problem.”

New Jersey and Massachusetts have made some strides, she wrote, but issues of abuse and neglect have largely not been addressed.

Last year, National Public Radio reported US Department of Justice figures showing that people with intellectual and developmental disabilities are seven times more likely to be sexually abused than others. Advocates say that figure is actually much higher.

Nora Baladerian, a psychologist and director of the Disability and Abuse Project of Spectrum Institute in Palm Springs, California, says she wishes the Hacienda incident was isolated.

“It is much more common than people know and we don’t even expect it or suspect that that could happen in a licensed facility that looks so proper. This is a problem nationally … and in other countries as well.”

Arizona has long been known for poor social services, ranking at the bottom when it comes to funding education, providing for people with mental illness and helping children in crisis. But the irony is that the state has a reputation for providing top-notch services for people with intellectual and developmental disabilities.

Earlier this month, Arizona once again ranked No 1 in a national report released by United Cerebral Palsy (this year, the American Network of Community Options and Resources also participated) called The Case for Inclusion, which measures everything from overall health and safety to efforts to keep people with intellectual and developmental disabilities at home.

The report bases much of its results on the length of waiting lists in each state. Arizona circumvents this challenge by making it very difficult to qualify for services, advocates say. In any case, the report is often held up by state officials as a blue ribbon.

But no one is crowing about the UCP report this year. A new legislative session began this week, and several lawmakers are sponsoring bills designed to begin reforming the system. First up, fix a 1997 law that exempted Hacienda from state regulation.

“Predators embed themselves in these facilities because they know they are wolf among the sheep,” says Democrat Jennifer Longdon, a freshman member of the state House.

“From a legislative point of view there are a number of things we need to do,” she adds, “including requiring comprehensive rape crisis services and appropriate oversight of agencies, as well as awareness training and reporting, things that people assume must be in place. Turns out, they’re really not.”

For Karina Cesena, none of this can come fast enough. She is terrified and she says her daughter is too. She describes the process of explaining what happened to Morris.

“Her eyes just got so big,” she says. Her daughter’s hands began to tremor, signaling a seizure. She has many seizures a day.

She lives a floor above where the woman who gave birth lived, in a different setting because she is making progress, Cesena says.She cannot walk or talk, but she is aware of her surroundings.

Cesena lives in Parker, in northern Arizona. She brought Morris to Hacienda because she read good reviews online. At first, she says, she was happy. When staff members left and the level of care declined, she says, she brought her daughter home. But it was too much. Now, she’s not sure what to do.

The clouds over Hacienda HealthCare turn to rain, and Cesena pulls her hoodie over her head. It begins to pour. She says goodbye, turns and walks inside.