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Death haunts mother who can't get answers

Fellowship Story Showcase

Death haunts mother who can't get answers

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Tom Corwin wrote this article, originally published by The Augusta Chronicle, as a 2014 National Health Journalism Fellow. Other stories in his project series can be found here:

Girl's death among 500 in one year in community care

Supreme Court ruling fuels push for community care 

A look at 'unexpected' deaths in community care homes

Georgia still not meeting care goals for disabled

Jessie Evans becomes emotional as she holds a portrait of her son, Cornelius James Evans, taken when he was 5 years old, at her home in Donalsonville, Ga. JON-MICHAEL SULLIVAN/STAFF
Jessie Evans becomes emotional as she holds a portrait of her son, Cornelius James Evans, taken when he was 5 years old, at her home in Donalsonville, Ga. JON-MICHAEL SULLIVAN/STAFF
The Augusta Chronicle
Saturday, March 28, 2015

Cornelius James Evans was never supposed to be in facilities where he was shuttled back and forth before he died under circumstances that his mother, Essie, is still trying to understand.

“They did not want to take care of my baby,” she said. “He was not supposed to be there.”

Cornelius had just turned 18 when he died, before his mother could establish formal legal guardianship, and the Georgia Department of Behavioral Health and Developmental Disabilities is now using that to deny her a copy of its investigation into his death.

Cornelius was one of 500 people who died in 2013 while in community care under the auspices of the department. A rash of deaths and failure to meet other standards prompted the department in 2013 to suspend the wholesale community placements it agreed to under a 2010 settlement with the U.S. Department of Justice. Despite that, another 498 of its patients in community care died last year.

Cornelius was one of 82 in community care who was listed as an unexpected death in 2013, which means there has to be a state investigation into the death; there were 141 such deaths in 2014. The Augusta Chronicle was able to request the state investigation into his death but the copy was heavily redacted, did not include his name and shed little light on what happened to him once he was sent into state care. His mother could not get even that.

There were obvious problems with Cornelius’ muscles when he was born in Tallahassee, Fla., on Jan., 25, 1995. A muscle biopsy yielded a diagnosis of mitochondrial myopathy, a condition where the powerhouse of the cell is dysfunctional and results in muscle weakness to varying degrees. Other doctors, including a consultation at Children’s Hospital of Georgia, would call that diagnosis into question and Evans does not believe that was correct.

Throughout his life, Cornelius needed help with the most basic of functions and had to be repositioned every few hours to help prevent bed sores. According to the state investigation, he could take some liquids by mouth but was a risk for choking. Cornelius had to be positioned upright or at an angle to prevent fluids from collecting in his lungs and he couldn’t cough very well, Evans said.

He also suffered frequent seizures and was on a number of different medications. Cornelius was “non-verbal” according to the state, but communicated to his mother through other sounds.

Beginning in his childhood, Evans battled with the state to get help caring for Cornelius at home.

A photograph of Cornelius James Evans (right) hangs in the home of his mother, Essie Evans, in Donalsonville, Ga. JON-MICHAEL SULLIVAN/STAFF

“I begged and I begged and I begged,” she said.

Evans sued and won, but the state appealed it and delayed the care, according to Not Home, a documentary on children like Cornelius who were being cared for in nursing homes because their parents could not get the state to support their care at home. Eventually, Evans said, she got approval – but there was a catch.

“We got approved for the Medicaid waiver program,” she said. “But the thing was they didn’t have anybody to provide the service. I said, ‘Now, you’re telling me out of all of southwest Georgia, all of these programs I have a list of, some local, some just miles away, that no one can come in here and give me help for my child?’ ”

Cornelius needed round-the-clock care and Evans tried providing it herself.

“I worked day and night,” she said. “I was told I couldn’t leave my house. I had to stay here 24 hours a day. I had to be here to administer his medication around the clock.”

Her daughter, Terria, had some training as a nursing assistant and she pitched in, along with Evans’ son, Morris Jr. Evans continued looking for part-time help because they were all “exhausted, stressed out,” she said.

Essie Evans talks about her son, Cornelius James Evans, at her home in Donalsonville, Ga. JON- MICHAEL SULLIVAN/STAFF

But in November 2011, Terria died at age 23 and the burden fell more heavily on the rest of the family. Eventually, Evans’ back and body were ruined from constantly lifting and shifting and repositioning her 130-pound son. She reached out to the state for respite care, and Cornelius was picked up on Feb. 11, 2013, and taken to Benchmark Crisis Home in Naylor, over an hour away.

“My son left here in good condition, good spirits, good health, good everything,” she said from her home in Donalsonville. But what was supposed to be, in her mind, a couple of weeks turned into four months.

Evans said she would call the center and the phone would ring endlessly without anyone picking up. She said she got the police in nearby Valdosta to go and verify that there was someone there and to pass along that she was trying to reach them. She did get through finally in mid-June and asked that the phone be placed by her son’s ear so she could talk to him. Even over the phone, Evans said, she could tell he was not feeling well.

“I said, ‘Cornelius, you listen to mommy, baby. You’re my big man. I love you so much and I miss you,’ ” she said.

Evans claims she begged the center to take him to the hospital, but it wasn’t until June 18 that Cornelius was taken to South Georgia Medical Center after running a fever for a few days, according to the state investigation. He would stay there until July 12, when he was transferred to a “swing bed” at Brooks County Hospital in Quitman to get post-hospital nursing care for 14 days. Evans said she had begged for him to be sent to Children’s Healthcare of Atlanta, where he had been seen before.

“Why would you all take my child out of a state hospital where all of the supplies and facilities and staff he needs to work with him (and send him) to a little local hospital?” she said.

A photograph of Cornelius James Evans is displayed in the home of his mother, Essie Evans, in Donalsonville, Ga. JON-MICHAEL SULLIVAN/STAFF

The staff assured her he was being prepared to come home, Evans said. But within a couple of days, Cornelius was having trouble breathing and was sent back to Valdosta. In less than a week, his prognosis was so poor that the hospital called Evans to get her to approve a do not resuscitate order. He died just before 1 a.m. July 20, 2013. The cause on his death certificate is cardiorespiratory arrest and respiratory failure, followed by aspiration pneumonia, caused by fluid or food being sucked into the lungs.

Evans doesn’t see how that could happen “unless they were not suctioning” fluids out, she said.

“He couldn’t really cough on his own. You had to suction him.”

She said she asked for an autopsy but was refused. State policy on unexpected deaths, like Cornelius’, require the provider to ask for an autopsy, but none was performed.

“You tell me why,” Evans said. “I would have had to pay for it. I would have paid.”

Many of her questions remain unanswered and Evans breaks down into tears as she thinks about her son’s last hours.

“He was my baby,” she said. “I wanted him in my arms when he passed. They took that away from me.”