Secrecy stymies families seeking answers

Kent Edwards was seeking answers on the day last June when he stormed into an assisted-living facility in Lino Lakes.

Instead, he nearly got arrested.

Weeks earlier, Edwards had received a voice mail saying the home was investigating an incident of maltreatment involving his mother, Suzanne Edwards, who was 70 and suffered from Alzheimer's disease.

Within minutes, however, two police officers arrived, responding to a complaint that Edwards was causing a disturbance, and tried to escort him from the building.

"Where were you guys when they were abusing my mother?" Edwards recalls asking as he walked out.

The incident was the latest in a series of frustrations for Edwards, a prizewinning amateur boxer from Lakeville.

Since February, he had been trying to get details of the incident and the names of the aides who had abused his mother. The facility's managers, citing state privacy laws, refused to share even basic facts, he said. So did the police, and so did the state Health Department.

Edwards, 41, grew furious.

"Just knowing that my mother suffered, and not knowing how or why, tears at my soul," he said. "She's my mother. I love her. And I have a right to know."

Yet in Minnesota, state law often bars families access to any details about incidents of abuse and neglect.

Reports submitted by state-licensed facilities, including nursing homes and assisted-living facilities, represent the vast majority of the 25,000 maltreatment allegations received by the Minnesota Department of Health each year.

These documents, known as "facility reports," enjoy certain privileges. Compared to complaints filed by residents and families, they are far less likely to trigger a visit from state investigators. In addition, the reports are kept confidential — in fact, the facility doesn't have to notify the family when it files one. When they seek details from the reports, families say, they're told to wait for the outcome of the state's investigation.

But the department investigates only 1 percent of facility self-reports. That means the details of thousands of allegations never come to light.

"This pervasive secrecy is fundamentally at odds with the state's obligation to protect vulnerable adults," said Suzanne Scheller, a Champlin attorney and founder of Elder Voice Family Advocates, a group of families advocating for better care for seniors. "How are you possibly protecting people by not telling them what actually happened?"

State officials and representatives of the senior care industry have long argued that the public benefits from these privacy rules. Facilities are more likely to report suspected abuse, they say, if they know the information won't instantly go public.

Releasing reports immediately could have "a potentially chilling effect" on facilities in cases where abuse is suspected but not proven, said Doug Beardsley, a vice president at Care Providers of Minnesota, a trade group.

"The concern is that, if every time you start that [investigative] process you alert families, that might create a lot of concern on their part that is unnecessary," Beardsley said, pointing out that in many cases, the state does not substantiates that abuse occurred.

They say confidentiality also protects victims and their families from undue trauma and embarrassment, in cases where investigators later determine that the allegation was false and the abuse never occurred.

Yet the layers of secrecy also make it difficult for families to make informed judgments about the safety of their loved ones and the quality of their care, elder advocates say.

Had he known the scope of the abuse his mother suffered, Edwards said, he would have acted immediately to protect her and other residents. He said he probably would have hired an attorney to conduct an independent investigation rather than relying on the Health Department. He also would have warned other residents at the facility.

Instead, Edwards found himself relying on that vague voice mail left on his telephone answering machine one night after work. The 45-second message, left by the home's director of nursing, mentioned "an incident" involving his mother. The caller said the situation was being handled, and police had been notified.

Edwards didn't panic, but the reference to police worried him. He stopped by the Lino Lakes Police Department, where, he said, a detective told him that videos of the abuse had surfaced. The officer added, however, that he couldn't give Edwards any details while a criminal investigation was underway.

Frustrated, Edwards went to the facility's executive director, who gave him the number on the facility's report filed with the state. Finally, he contacted the Health Department.

He was told the report was confidential.

"I wasn't asking for much," Edwards said. "Just some idea of how badly my mother suffered."

Nearly five months passed before Edwards discovered the nature of the abuse. A former employee at the facility, responding to a post on Edwards' Facebook page, sent him a series of disturbing videos taken on a cellphone. The footage showed his mother being repeatedly threatened, mocked and humiliated by two female nurse's aides.

In one video, an aide threatened to burn her with a cigarette lighter. In another, the caregivers lifted her nightgown to expose her naked body, while making lewd comments. Videos also showed the two women restraining his mother by pushing a chair against her legs, then laughing hysterically as she struggled to get up. "You can't move, go ahead and try it!" one of them yelled.

In a deal with Anoka County prosecutors, one of the aides eventually pleaded guilty to a gross misdemeanor. She was sentenced to 12 days in jail. The other faces a trial next year.

The administrator of Lino Lakes Assisted Living said he took the incident "very seriously,'' and launched an investigation immediately. Citing privacy concerns, he declined to discuss specifics of what was found. "This incident is not representative of the service that we provide our residents," said David Jones, executive director of the 112-bed facility.

After seeing the videos, Edwards immediately packed his mother's belongings and moved her to a new facility in West St. Paul.

One afternoon last summer, Edwards appeared in the doorway of his mother's new bedroom. Draped over his shoulder was a championship belt from his recent victory at a world amateur boxing event in Missouri.

"Ma, listen," he said. "My coach, he told me right before the bell rang to remember the people who hurt you, to picture that my opponent was them."

"So did you win?" she asked.

"Yeah, Ma!" he said, falling into her arms. "I sent the guy packing back to Canada."

Two months later, Suzanne Edwards died in her bed after suffering several major seizures. Her son arrived minutes after her final breath, lay down on the bed, and wrapped her body in his arms.

Chris.Serres@startribune.com 612-673-4308David.Joles@startribune.com 612-673-7904