Carolyn Tillman loves her job. Many would consider it thankless. And it is true that most of the people she works with cannot say thank you. Cerebral palsy, epilepsy, brain damage and other conditions can make that impossible. But, she says, in tending to a person’s every need – feeding, bathroom needs, repositioning – you really get to know them.

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Sometimes, in the “total care” room at Gompers Habilitation Center in west Phoenix, she plays music. One day, she realized that every time Don’t Take the Girl by Tim McGraw came on, a male client would start to weep.

“Not hysterically,” she says. “Very, very quiet about it. He’d start crying and kind of poking out his lip a little bit. And I said, ‘OK, maybe he’s not feeling well, you know?’ And then I noticed again when the song came on, he did it again and I said, ‘Do you not like that song?’ He put his head down.”

Tillman changed the song, and soon, she says, the man was dancing in his wheelchair.

It’s a good thing Tillman enjoys what she does, because after 15 years she makes just above the minimum wage and even with recent increases, Arizona’s minimum is just $11 an hour. Tillman takes extra jobs, working seven days a week.

Facebook Twitter Pinterest Carolyn Tillman. Photograph: Amy Silverman/The Guardian

In Arizona, “help wanted” signs are a fixture outside many care facilities. But it’s not simply a lack of dollars that challenges a system designed to protect people with intellectual and developmental disabilities. Weeks after a woman with profound disabilities gave birth to a full-term baby boy at Hacienda HealthCare in Phoenix, alarming problems are coming to light.

In the Hacienda case, Nathan Sutherland, a licensed practical nurse who had worked at the facility since 2011, was arrested and charged with sexual assault. In response, advocates voiced concern that public attention drawn to the struggling system would now inevitably wane.

‘Ready to take this on’

Asim Dietrich, a staff attorney at the Arizona Center for Disability Law in Phoenix, understands the challenge better than most. He has muscular dystrophy. He uses a wheelchair to get around and a mic to amplify his voice. A breathing machine hums while he works.

Facebook Twitter Pinterest Asim Dietrich. Photograph: Amy Silverman/The Guardian

A graduate of Arizona State University law school, he always knew he wanted to work on behalf of people with disabilities. Hours after Sutherland’s arrest, he joined other advocates, elected officials and staff in the old supreme court chambers at the Arizona capitol, for a stakeholders meeting. When Dietrich glided up to the podium, the room grew quiet.

Covered from neck to feet in a red and black checked blanket, he spoke firmly, observing holes in Arizona laws that might allow a convicted criminal to slip into a job at a high-level care facility.

Days later, the Arizona Developmental Disabilities Planning Council (ADDPC) released a report asking for new funding for awareness education and trauma counseling; for tougher mandatory reporting laws; for protection for victims who testify; for uniform licensing; and for public reporting of investigative findings at care facilities.

The Arizona Association of Providers for People with Disabilities (AAPPD), which represents Tillman’s employer among others, wants a funding increase to pay caregivers more than minimum wage.

Seeking to address some of these issues, Jennifer Longdon, a Phoenix Democrat who is the first member of the Arizona legislature to use a wheelchair full-time (thanks to a gunshot injury), will introduce legislation next week.

“I’m pleased to know that I have folks on both sides of the aisle and in both chambers and in the governor’s office who are ready to take this on,” she says.

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But it won’t be easy. In the words of Jon Meyers, executive director of The Arc of Arizona, a nonprofit which supports people with intellectual and physical disabilities: “No one was ever voted into or out of office as a result of the care for people with developmental disabilities.”

A legal mess

In Arizona, laws governing the protection of the severely disabled are a mess. Legislation passed in 1997, for example, exempted intermediate care facilities (ICFs) from state licensing. But despite their name, ICFs provide the highest level of care. Hacienda has an ICF unit: it was where the woman gave birth on New Year’s Eve.

The federal government is required to examine conditions at an ICF every 15.9 months. State officials say such visits happen about once a year. But between 2014 and 2018, Hacienda was only found to have a couple of violations of infection control practices, some fire safety concerns and some procedural errors. Even if the state had been charged with monitoring Hacienda, advocates say, there is no guarantee anyone would have been any safer.

Facebook Twitter Pinterest Nursing students listen during a special meeting of the Arizona nursing board special in Phoenix, regarding events at Hacienda HealthCare. Photograph: Matt York/AP

It is difficult to assess state-level scrutiny of facilities for the severely disabled, from day programs to group homes. Citing privacy concerns, officials at the Arizona Department of Economic Security (DES) refuse to release any incident reports, even redacted. In fact, the department denies conducting any investigations into allegations of abuse or neglect – or anything else, for that matter.

Insiders say that is far from true: such inquiries are simply not called “investigations”.

DES officials say several other agencies have investigative authority. Adult Protective Services (APS) is one of them. It does maintain a registry of caregivers who have been found guilty of crimes, but it does not record that data by facility. So in the Hacienda case, it is not possible to look for any pattern of problematic employees being hired. Also, at the stakeholders meeting at the state capitol it was revealed that, unlike the agency charged with protecting Arizona’s children, APS does not have a hotline to take complaints 24 hours a day.

Perhaps the biggest red flag is buried deep on the website of the Arizona Health Care Cost Containment System (AHCCCS), the state Medicaid system.

In October 2018, it posted a damning letter announcing its determination that the DES was in violation of procedures designed to protect quality of care. An audit performed between June 2017 and August 2018 revealed 27,000 “quality” incident reports. None were looked at by a clinician to determine if an investigation was necessary.

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Meggan Harley, chief procurement officer for AHCCCS, wrote: “Not only did these referred incidents create an immense backlog of unaddressed quality incident reports, [the agency’s] failure to timely and thoroughly review these … matters placed the health and safety of vulnerable … members at risk.”

Furthermore, AHCCCS auditors who studied incidents in June and July 2018 noted that care providers were sometimes asked to conduct investigations of themselves, and that “member behavior” – client-on-client sexual abuse, among other things – was not always reported or correctly assessed.

The investigation into Hacienda HealthCare is ongoing. Advocates hope it will shed much-needed light on what happened there and what must change statewide.

Longdon says: “This one horrific situation needs to be addressed but we need to look overall at how entire communities are being treated and cared for.”

Dietrich says the public should see the woman who was assaulted “as a human being and understand that this can be a member of our family or it could be anyone.

“It could be any of us.”