Deaths Largely Not Investigated

By Beth Musgrave, The Lexington Herald-Leader, Ky.

Jan. 7–She started crying shortly after 8:30 p.m. Her stomach hurt, she said. She couldn’t sleep.

Staff at the group home in Christian County who were paid to take care of the mentally retarded woman gave her Pepto-Bismol and checked her blood sugar. By 11 p.m. she was unresponsive. By 10:45 the next morning, March 21, 2005, she was dead.

Doctors at a Hopkinsville hospital suspected that an untreated infection shut down her kidneys, according to state documents.

But no one will know for sure what happened or whether the woman’s death could have been prevented. According to state documents, no autopsy was done. The Department for Mental Health and Mental Retardation, which polices community-based services for the mentally disabled, did not investigate.

The woman, whose name was not released, is one of thousands of mentally disabled people who received care in group homes paid for by Medicaid. And she is one of 146 people who died over the past five years in the Supports for Community Living program, a network of 137 agencies that provides community-based services such as housing and counseling to 2,874 mentally disabled Kentuckians.

Since 2001, the state has initiated on-site investigations in only 18 of the 146 deaths in the community living program, a Herald-Leader investigation found.

Long-term mortality rates for mentally disabled people in community facilities are unknown. The department only started tracking deaths of the mentally disabled in the community in 2001.

Thirty-eight of the 146 deaths since then were unexpected or sudden, according to the reports providers sent to the department. Those deaths include a woman who came back from a short walk, collapsed and later died. In another case, a man slumped over at the breakfast table, uttered the words “Oh me!” and stopped breathing. Four people died after choking. Nine died of cancer, and in at least two cases the cancer was detected too late to treat.

If any of those 146 people had died in a state institution in Kentucky or if they had died in similar community-based programs in other nearby states, their deaths would have been investigated. Ohio investigates every such death. Indiana investigates all unexpected or sudden deaths as well as deaths caused by pneumonia or choking. Both states have panels that review all deaths of the mentally disabled who receive community-based services to detect problems, trends and possible wrong-doing on the part of providers or family members.

Those who receive services in the community die at roughly the same rate as those who live in Kentucky institutions, statistics show. Yet deaths in state-run institutions trigger an automatic investigation by the Office of Inspector General with the Cabinet for Health and Family Services. Kentucky Protection and Advocacy, a state agency charged with representing the mentally handicapped and mentally ill in Kentucky, is also notified of all deaths in institutions. A mortality review board, made up of doctors and other specialists, also reviews all deaths in institutions.

But the same review process doesn’t apply when deaths occur in Kentucky’s privately run, community-based care facilities. In those cases, only deaths deemed suspicious trigger an on-site investigation. Staff from the Department for Mental Health and Mental Retardation, a department with the Kentucky Cabinet for Health and Family Services, say all deaths are reviewed, and some of the 146 deaths did trigger other follow-up besides an on-site investigation.

Still, the lack of in-depth investigation of deaths in the community is a gaping hole in Kentucky’s protection of the mentally disabled, said Marsha Hockensmith of Kentucky Protection and Advocacy.

“It’s about improving the quality of care,” said Hockensmith. “One big reason to investigate these deaths is to make sure that you don’t have a staff person who is doing something wrong.”

The issue takes on added weight because the Supports for Community Living program, which began more than two decades ago to move people from traditional institutions into the community, will only grow. More than 2,800 people are on the waiting list for services.

Meanwhile, more residents are moving out of the troubled Communities at Oakwood in Somerset — the state’s largest institution for the mentally retarded — and into community care. And the state estimates that as many as 10,000 mentally retarded people are living with aging parents and may soon need more intensive, community-based services.

Community care is also big business. Medicaid pays on average $60,000 a year per resident to community care providers.

But before the system gets bigger, it needs to get better, advocates say.

Information not shared

A thorough review of deaths could help care providers know what to watch for and possibly prevent other deaths, Hockensmith and some providers say. But providers say information gleaned from investigations isn’t always passed on to them.

In 2003, Robert Gene Diamond, 28, died at a staffed home in Laurel County after being placed in prone restraint — meaning he was placed face down and held by two staff members — after he tried to run out the door of his home. That technique had already been banned in many states after a 1999 report by the U.S. General Accounting Office linked the use of prone restraint to deaths.

Two years after Diamond’s death, Todd Johnson, a 34-year-old mentally disabled man, died at a group home in Morehead after being placed in prone restraint.

It was only after Johnson’s death that the Department for Mental Health and Mental Retardation banned the use of prone restraint in community homes.

Tammy Woody, who later took over as executive director at New Foundations in London where Diamond died, said that until Diamond’s death she never would have thought that prone restraint could lead to death. Woody and other providers the Herald-Leader spoke to were often unaware of the results of investigations into deaths at other agencies. Woody and Hockensmith say that’s important information that could help providers.

“The more information that we have, the fewer mistakes we make,” Woody said. “I think most injuries are truly accidental. We want to know what we can do better.”

Betsy Dunnigan, of the Department for Mental Health and Mental Retardation, said that after Diamond’s death the department encouraged providers not to use prone or supine restraint and told providers it was because there had been a death. The department is trying to use quarterly meetings with providers to pass on more information, she said. But those meetings are not mandatory for providers.

Dunnigan said all deaths are reviewed by staff and some trigger follow-up, including phone calls and technical assistance. Of the 146 deaths, at least 30 involved some other follow-up besides an on-site investigation, department records show. The department is also working to try to get the mortality review panel, which reviews all deaths in institutions, to look at deaths in the community.

The biggest obstacles to expanding the responsibilities of the mortality review committee have been money and time, Dunnigan said.

The department also recently added more staff to review cases involving death and other serious incidents including hospitalization. It also has revamped its database to better track problems and incidents.

Department nurses reviewed the death of the woman who had complained of a stomachache and found that staff in the home had responded appropriately — they had checked the woman’s blood sugar and called paramedics when she was unresponsive, Dunnigan said. The department decided not to investigate. The coroner ruled that the woman who collapsed after taking a short walk, probably died after a blood clot from her leg traveled to her heart. There was no way that the staff could have predicted that would happen, and the department decided not to investigate, Dunnigan said.

Poor training

The cases in community homes that have prompted investigations show some disturbing trends. Staff are sometimes poorly trained to perform basic, life-saving procedures, a review of the investigations shows. Of the 18 investigations, department investigators found that an agency did something wrong and issued citations in 10.

In many cases, the department had cited the agency in previous annual reviews for similar problems. And in one death investigation, department investigators suspected that the agency might have tried to cover up possible wrongdoing on the part of its staff by leaving out key information, a charge the agency denies.

In at least four investigations, staff either failed to perform life-saving procedures or were negligent in providing basic health care.

On Jan. 1, 2003, Mary Beth Fryrear, 23, who had trouble swallowing, choked on a piece of tangerine that she wasn’t supposed to have. Staff at the privately run Community Alternatives Kentucky home in Elizabethtown where she lived performed abdominal thrusts and struck Fryrear on the back to try to clear her airway. But they failed to perform CPR when Fryrear lost consciousness, the department investigation showed.

The coroner ruled that Fryrear choked to death. The emergency room doctor found chunks of tangerine in Fryrear’s throat, the autopsy showed.

In another case, Linda Gayle Whitt, 53, fell outside her Lexington staffed residence on a frigid February day in 2006. She was left on a cold driveway for almost 45 minutes, investigators believe. It wasn’t until three and a half hours after Whitt fell that she received medical attention for hypothermia. She later died of complications from surgery to warm her blood.

Community care providers say that although there have been mistakes in the past, staff members are adequately trained. Sometimes, they said, no amount of training can prepare a staff member for a crisis.

The staff member who failed to perform CPR on Fryrear was a former military combat nurse, said Dan Baker, an administrator at Community Alternatives Kentucky, a division of ResCare, a Louisville-based company that operates 13 Community Alternatives providers in Kentucky. ResCare is one of the largest providers of community-based services in the state.

“We can try to train and retrain, but you don’t know how people are going to react until they’re actually in the situation,” Baker said.

The home where Todd Johnson died after being placed in prone restraint was also operated by Community Alternatives. In that case, investigators said that staff members who restrained Johnson were not properly trained in the technique. Company officials dispute that finding.

Baker said the Community Alternatives homes were using restraint techniques that were approved by the state. After Johnson’s death, the company developed its own restraint curriculum and banned prone restraint in its homes.

Rose Johnson-Bohr, Todd Johnson’s mother, said she does not blame the staff at the Morehead residence for what happened to her son. Johnson, who had brain and central nervous system disorders, sometimes became violent and manic for no apparent reason and had been restrained on other occasions, she said.

“I think they did what they had to do and they did it in Todd’s best interest and in the best interest of everyone in that home,” Johnson-Bohr said. “I have nothing but admiration for them. They are the ones that take care of people that most of society has shunned, and they don’t make a lot of money doing it.”

Providers say the state’s death investigations don’t show how many times a quick-thinking employee saved the life of a person in community care. Or the number of times staff members advocated for changes in medication or more tests that ultimately saved or improved the quality of life of people they care for.

“In the last three years, throughout our agencies, there were at least 16 incidents where we have performed life-saving measures that have saved people’s lives,” Baker said. “Those are the kinds of thing that you don’t hear about, that we don’t get measured on.”

Failing to fix problems

Department of Mental Health and Mental Retardation records show that agencies can struggle, sometimes for years, to fix problems after a death.

The Community Alternatives facility in Elizabethtown was cited for failing to turn over all of its internal investigation to department investigators in Fryrear’s choking death. The facility was also cited in follow-up reviews for failing to report incidents to the department, turning over information late and for failing to train staff.

After receiving the agency’s initial report, state investigators were not going to launch an on-site investigation of Fryrear’s death. The state did identify some training issues and recommended technical assistance. According to department documents, investigators received an anonymous call saying that the report was incomplete and had been altered at the direction of company administrators. Department investigators asked for the full report from the company’s internal investigator, but the agency refused, saying it was protected by attorney-client privilege.

When questioned by state investigators, the company’s internal investigator admitted that there were “holes in the report,” which did not include conflicting information from the three staff members who were present when Fryrear died.

Baker adamantly denied that anyone at ResCare or Community Alternatives Kentucky tried to alter the internal report so the department would not initiate an investigation.

The company’s Elizabethtown facility, in follow-up annual surveys, continued to have problems with reporting information to the state, records show.

Baker acknowledged that there had been problems at Elizabethtown over the years.

“We have made significant changes there,” Baker said. “We have changed leadership. Over a period of time, there was staff that needed to change, and that was done.”

Other providers have also struggled to correct problems after being cited by the state.

New Foundations, where Diamond died, was also cited in follow-up annual certifications for its use of restraint. Woody said New Foundations has spent thousands of dollars retraining staff on crisis behavioral management. Restraints — physical holds of any kind — are way down at New Foundations homes, Woody said. In its last annual review, the agency received no citations, which is rare.

Department for Mental Health and Mental Retardation officials say they realize that getting providers to make corrections sometimes takes too long.

Dunnigan said the state wants providers to stay open. Thousands of people are waiting for community-based services. “We always focus all of our efforts on monitoring and technical assistance to help the provider make the correction and stay in business,” she said.

The department has terminated agencies for poor performance in the past. Over the past five years it has terminated 10 providers and is in the process of terminating an 11th.

The department has revamped its orientation process for new providers, and is working to post information online so consumers can make wise decisions when picking a care home. Many of the providers involved in death investigations were not allowed to accept any new clients until the department was confident that changes had been made. The department is also looking at other ways to increase compliance, including monetary sanctions.

“There are a lot of discussions, nothing has been finalized,” Dunnigan said. “Typically, if you don’t go after their money, it takes longer to get corrections made.”

News Researcher Linda Niemi and staff writer Steve Lannen contributed to this report. Reach Beth Musgrave at (859) 231-3205, 1-800-950-6397, Ext. 3205, or bmusgrave @herald-leader.com

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Copyright (c) 2007, The Lexington Herald-Leader, Ky.

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