To this day, Sherman Smotherman doesn't know what happened to his late brother, Jerry.
"Sometimes he ate too quickly. He had to be watched. They knew that," he said.
So why, he asks, did his intellectually disabled brother choke to death while in the state's care?
The Murfreesboro man says he never got an answer to that question. His concerns were echoed by relatives of several other deceased people whose care was entrusted to the state Department of Intellectual and Developmental Disabilities.
The agency, already faulted for "serious problems" in a recent audit by the state comptroller's office, came under fire again last month. A massive report filed in U.S. District Court in Nashville under a longstanding consent decree details dozens of cases of poor and inadequate treatment of residents in Middle and East Tennessee. Among its findings:
• An alarming increase in deaths. In group homes and residences for people with intellectual disabilities where care is provided by the state, deaths nearly doubled between 2009 and 2013, from 19 to 34 — even as the population in those homes increased only 11 percent. The state had eliminated independent, outside experts who reviewed deaths to determine whether abuse or neglect was involved. Instead, the department conducts its own review.
• Inadequate health care. Treating physicians rarely developed medication plans, and in some cases, drugs were administered on the wrong schedule and in the wrong dosages. Tests ordered by doctors were not performed, many residents did not receive proper medical care, and the use of psychotropic medications steadily climbed.
• Abuse and neglect. Court-appointed monitors documented broken bones that went undetected for days, multiple falls from wheelchairs and in showers, and one resident left for an extended period of time covered in his own feces and urine.
Conditions have gotten worse, not better. Nearly half of the residences failed to meet court-ordered standards in 2013, the report found. Two years earlier, 70 percent met the standards.
The court filing criticized the state for ending a contract in 2008 under which an outside agency conducted death reviews, leaving the state to investigate itself — or not. In one case, a 55-year-old man collapsed after dinner and couldn't be revived. Though his death was sudden and unexpected, the report said, the state did not perform a review.
Agency spokeswoman Cara Kumari said that current employees of the agency did not know why the old contract was terminated but that Commissioner Debra Payne had recently decided to reverse that action and have future death reviews done by an independent agency.
The long wait for services
The department provides services to more than 8,000 Tennesseans with intellectual disabilities, defined by an IQ of 70 or less. More than 7,100 others are on a waiting list for services. Some have been waiting since 1994.
For thousands more people with other developmental disabilities — conditions such as cerebral palsy or spina bifida — there is not evena waiting list. Although the state law that created the department requires it to provide services to this population, the state has made no effort to add services — or even assess the number of people in Tennessee with developmental disabilities. Advocates believe there may be more than 40,000.
An increasing number of people who do receive services from DIDD have been moved into group homes and community residences from large state-run institutions that once housed thousands of people. Two institutions were closed after the U.S. Department of Justice filed suits in the 1990s detailing deplorable conditions at the facilities. Two other institutions — Clover Bottom in Nashville and Greene Valley in East Tennessee — are still in the process of moving residents into homes, where typically up to four people live with around-the-clock attendants. In 2009, 749 people lived in such residences run by the state or its private contractors in Middle and East Tennessee. By 2013, there were 832.
Records obtained by The Tennessean through a public records request show that for people receiving services in those homes, it is often inadequate — and sometimes deadly. The records show that 63 unanticipated deaths at group homes and residences were investigated over the past three years. Although the reports blacked out the names of the deceased, The Tennessean learned the identities of many through death records and interviews with family members.
The state investigations found evidence of negligence by care workers in 14 cases, but families reached by The Tennessean say they were never informed. In some cases the investigators were unable to determine who was at fault and declined to issue a negligence finding.
Kumari said it is department policy to inform the family or legal representative, such as a conservator, when an investigation is launched and "to the extent possible" to give the family or legal representative a summary of the results of an investigation within 15 days of its completion.
Asked about the cases cited by The Tennessean in which family members said they were not informed, Kumari said that legal representatives were contacted except in one case in which the resident did not have a legal representative.
A delayed call to 911
Like Jerry Smotherman, many of those who died under state care literally choked to death after swallowing food that had not been properly processed to accommodate their difficulty in swallowing. Others died after apparent delays in starting resuscitation efforts or summoning an ambulance.
The report on Smotherman's death shows he was left in the care of a worker who had come to the United States on a work visa from Mexico as a manager for Tennessee Home Solutions. Though the report refers to a "language barrier," Ralph Kennedy, executive director of the nonprofit, said the worker's English was excellent.
State investigators determined that Smotherman, 56, sneaked into a refrigerator on the morning of April 25, 2011, stuffed his mouth with meat and immediately began to choke. The lone employee, who was monitoring the other resident at the time, did not realize what had happened until he heard the refrigerator door close.
The worker rushed to Smotherman immediately, but a 911 call was not made until another worker returned to the group home at least six minutes and possibly as long as 16 minutes later, the report says. Smotherman was never revived.
The original investigative report concluded that Smotherman was neglected because he and another resident were left alone with only one staff member, who had worked for the company for a little over a month. The staffing plan called for one worker for each resident.
The original report also cited the home for not having a staff member present who could adequately respond to a crisis.
A departmental committee later overturned the second finding, concluding that leaving the worker alone with the residents and in charge as a manager "certainly seemed to be a poor decision, in light of what happened, but doing so does not meet the neglect definition and is not substantiated."
Kennedy said the incident was "tragic in more ways than one." He said the worker had been fully trained to state standards.
"The investigator disagreed with my hiring decision. I guess we all have our biases," he said, referring to the report's mention of the worker's ethnicity.
"It's one of those things that haunt you," Kennedy said of the choking incident. "None of us could have foreseen that this would happen."
The April 2011 incident was not the first in which Jerry Smotherman's life was placed in jeopardy. A few years earlier, Sherman Smotherman recalled, his brother was nearly beaten to death at another group home in the Nashville area.
"He got beat up pretty bad," he said, adding that the family was never told about the results of an investigation of the beating.
Sherman Smotherman said his older brother was placed in state care as a teenager when his family could no longer care for him. After reading the state report, Smotherman said he was surprised to see that no real penalty was imposed and the company only had to file a corrective action plan.
A panel of independent experts appointed by a federal judge to monitor the agency has recommended for years that DIDD take a closer and more objective look at the deaths of people in its care.
In 2011, 2012 and 2013, the panel issued reports recommending an independent overseer review the circumstances surrounding deaths — a step state officials told panel members on Thursday that they would finally take.
The panel also recommended that the agency conduct a comprehensive review of every death in group homes, not just those initially deemed suspicious, unexplained or unexpected, that the agency provide the panel with death reviews immediately and that it make available all relevant materials, including copies of discharge papers and autopsies.
Citing the increasing number of deaths at the agency in recent years, the panel also recommendedthat DIDD follow its existing policies, which require it to conduct a comprehensive trend analysis to examine "the relevant facts and circumstances including the medical care provided, to identify practices or conditions which may have contributed to the death and to make recommendations where necessary to prevent similar occurrences" from happening in the future.
"It seemed to us that it is a high number, and it does concern us that it is an increasing number," said Jaylon Fincannon, chair of the Quality Review Panel, which was appointed by the federal court to monitor conditions for residents.
Tennessee officials say they are still reviewing the report and will decide how to address each recommendation.
Some other states are well ahead of Tennessee in ensuring independent review of abuse, neglect and deaths in state-funded group homes and residences.
In 2002, after media reports chronicled a large number of deaths in Connecticut group homes, the state's Department of Developmental Services moved quickly to strengthen internal abuse and neglect investigations. Then-Gov. John Rowland issued an executive order establishing an independent Fatality Review Board, and lawmakers followed up the next year by undertaking their own examination of the agency. In 2003 the state passed comprehensive legislation strengthening oversight of group homes.
In recent years, media coverage of deaths in state-operated homes prompted sweeping reforms in states such as Oregon and Illinois.
Strengthening oversight does not come with a significant price tag, according to the National Council on Disability, an independent federal agency that provides guidance to states seeking to reform their policies.
Tennessee already spends more for state-funded homes for its most intensive care for people with intellectual disabilities — $124,000 per individual per year, compared with the national average of $85,000. While Connecticut pays more — about $177,000 per person — Oregon, Illinois and other states have reduced costs.
'He didn't have to die'
The Smothermans are not the only family left in the dark about the results of an internal death investigation.
Adrienne Cross of Chattanooga said her family got a call early last year telling them that her nephew had been rushed to a local hospital from the Core Services of Northeast Tennessee after apparently choking. Like Smotherman, Jeffrey Kendrick was supposed to be on a restricted diet because of swallowing difficulties.
"When we got to the hospital, he was on a respirator. Basically, he was dead. We knew he had choked but never found out why or how," Cross recalled.
"We were not given any information. We got the runaround. We never got the report or found out what really happened."
She said they were told the person in charge of the investigation had retired.
Provided a copy of the investigation report on her nephew's death by The Tennessean, Cross said, "When I read that report, it just made me sick. He didn't have to die."
The report found there was no neglect because investigators were unable to find out how Kendrick got the sandwich that caused him to choke.
Choking is a well-known hazard for people with intellectual disabilities. Many require "swallow studies" and "feeding plans" that determine safe bite sizes. They may need constant one-on-one supervision during meals. Some simply don't know how to pace themselves and can choke by eating too quickly or aspirate food into their lungs, leading to infection. Others have accompanying physical problems that make swallowing difficult.
"It is really critical with people who are so vulnerable and have these kinds of disabilities to have feeding plans and for staff to be alert," said Donna DeStefano, assistant executive director at the Tennessee Disability Coalition.
State investigators found neglect in the case of a 59-year-old man who died in 2012. The Clarksville man was a resident of a home maintained by At Home Transitional Living, a now-defunct Nashville firm headed by William Byles, who also runs a bail bonding business.
"By his own admission," the report states, "Mr. Byles did not personally provide supervision to the staff providing direct care."
The report concludes that Byles and his company failed to provide staff supervision and neglected the patient. It notes that Byles and a staffer had been cited previously for the same issue with another patient. Other staffers had been cited for lack of training and certification.
Byles, in a telephone interview, strongly denied there was neglect and said the resident's death came long after the man left the group home.
"He wasn't with us when he died," Byles said.
The investigation report states that the patient had to be hospitalized after leaving the group home and died about a month later.
'Did she cry out?'
Anita Hendrixson was a resident at a home in Dickson staffed by Developmental Services of Dickson County.
Her mother, Jean Hendrixson of Burns, said her daughter appeared to be in a declining condition last spring but staffers blamed her falls and refusal to move on behavioral issues. She said at one point she found her daughter lying on the floor in her own urine.
On the day her daughter died, Hendrixson got a frantic call from a worker at the group home.
"She was turning blue. She was lying on the floor when I got there. They wouldn't tell me anything," she said.
According to the state report on Anita Hendrixson's death, she was found unresponsive in her bed early on the morning of March 24.
Though the investigators did not conclude there was negligence in the case, they did note a delay in calling 911 and that no effort was made at resuscitation.
Jean Hendrixson, like other family members contacted, said she never got the investigative report or a full accounting of what happened. She agreed to an autopsy but was told the results were inconclusive.
She said she was told that no one knew her daughter was near death until they went to wake her up that morning.
"They never told me how that happened," she said. "Did she cry out? No one has even bothered to tell me."
Katy Powers, executive director of the Dickson agency, said the state investigation showed there was no negligence and that no corrective action was needed. She said Jean Hendrixson's complaints were with the doctors who diagnosed and treated her daughter.
"We took her to every appointment. We made sure," she said.
Hendrixson said Powers' agency does a lot of good, but she remains convinced her daughter's life could have been saved.
"My error was believing people," she said.
Contact Walter F. Roche Jr. at 615-259-8086. Contact Anita Wadhwani at 615-259-8092.