On what would have been David Cains' 44th birthday, his younger sister planned to celebrate with his McDonald's order -- a Big Mac meal, with a diet soda and a cheeseburger or McDouble on the side.
She picked up a cake decorated with a Scooby Doo cartoon, a favorite of Cains, who had disabilities and lived at the Booneville Human Development Center. That July day, Chrissie McAuliffe and the rest of Cains' family planned to celebrate "Davie's" life by telling stories about him.
Before the festivities, a difficult task was at hand.
By video chat from a car, McAuliffe spoke with the Arkansas Democrat-Gazette for more than hour about Cains' life and how he died -- after having a medical emergency while being physically restrained by the Booneville Human Development Center staff on June 13, 2020.
More than a year after her brother's death in the state-run facility, McAuliffe is stepping forward to identify him publicly for the first time, share concerns about the state's investigation and push for stronger oversight of the practice of restraining people with intellectual disabilities in facilities like the one in Booneville.
Her account came just before the state Division of Developmental Disabilities Services suffered a setback to ongoing reforms of restraint practices in those sites. An outside consultant set to recommend changes for the residential centers bowed out in August, saying he couldn't get permission from his employer to do the work.
It took state officials months to identify and hire the Pennsylvania-based expert who was meant to be a pillar of the state's efforts, with several reforms hinging on his input, as outlined in a May plan obtained through open-records laws.
A reform initiative kicked into high gear shortly after Cains died. Officials have not acknowledged explicit ties between the project and Cains' death, instead citing national reports of increased restraint use at intermediate care facilities during the pandemic.
Physical, chemical and "mechanical" restraints are in use in Arkansas' five human development centers, which house 861 people with disabilities and health issues across the state. "Mechanical" restraints are devices such as restraint chairs, wrist wraps and a padded board with straps, called a papoose board. Chemical restraints are medications.
Last September, as part of an investigation into residents' welfare at the centers, the newspaper revealed five instances where documents showed that residents were harmed or could have been hurt by restraints. One 2019 event broke a resident's arm. Another caused someone to faint after a "choke hold."
At the time, Division of Developmental Disabilities Services' director Melissa Stone said the episodes "should be categorized as abuse not a personal restraint gone wrong." Restraints are used only when people who live at the sites endanger themselves or others, she said then.
Data provided by regulators show that restraints are still used at the Booneville site, with 49 instances of personal restraint, 34 chemical restraints and five instances of mechanical restraint in August. Thirty-one people, or about 26% of the facility's clients, were restrained last month, the data show.
The newspaper first disclosed Cains' death in January, without naming him, as part of its examination. Now, McAuliffe's account and more than 300 pages of personal records that she shared provide graphic new details and corroborate a report from a federally chartered watchdog for people with disabilities that identified contradictions in official accounts.
Among them, hospital records say Cains "choked on food he was eating, aspirated and stopped breathing," not that he was being physically restrained.
A Logan County EMS record doesn't mention restraints in a five-paragraph narrative. (A previously reported coroner's record also repeats the description that Cains "was eating lunch.")
In written responses to questions, Department of Human Services spokesman Gavin Lesnick said officials "cannot speak to or verify what information was provided" to the health entities, but they do not believe there is a discrepancy with the physician's and coroner's reports. The agency "cannot advise on the specifics of how David aspirated," but he'd recently eaten, Lesnick wrote.
"David was a long-time member of our community, and we also mourn his death and are sorry for his loss," he added.
More generally, he called the review of restraint practices "critical," saying the Human Services agency wants thorough and speedy recommendations. There is still a possibility that the consultant who stepped aside could join with the state, though an appeal to his employer was denied.
"We remain committed to this effort," Lesnick wrote.
The state's internal investigation found that three staff members who restrained Cains "conducted themselves in an appropriate manner and immediately responded" to him, according to an incident report shared with a reporter. All three were cleared to return work the following week.
McAuliffe says she wants justice for her brother. She does not feel that the state's investigation, which found "insufficient evidence" of maltreatment by the staff, adequately explained why he died or accounted for worrisome inconsistencies in official records about his death.
"Just saying I'm angry and heartbroken doesn't express what I felt," she said.
"I know in my gut that my brother didn't have to die that day."
'DISCREPANCIES'
Cains' diagnoses included a severe intellectual disability, anxiety and other health issues, his medical records show. But that didn't affect his relationship with his sister, she said.
As kids growing up near Russellville, they spent a lot of time outside, playing Nintendo, riding bikes, catching lightning bugs and baiting crawfish with deli meat. Cains grew from a "funny, happy" kid to a "funny, happy" adult, she said.
Cains began living at the Booneville Human Development Center in 2007 after an experience of neglect in a home-based care setting. Although she was hesitant at first, McAuliffe said her brother thrived there. He worked at a job on-site, made friends and attended life-skills classes.
The siblings stayed close over the next 13 years. McAuliffe and her mother frequently picked Cains up from the Booneville site to drive into town for milkshakes, playing his favorite Monkees albums. To unwind, he loved his favorite shows and comfortable repeats, rewatching the same old episodes of the television programs "M*ASH" and "The Dukes of Hazzard."
"My brother wasn't just living there, and we had nothing to do with him. He was there because we felt like, at the time, that was what was best for him," McAuliffe said.
Sometimes Cains would mention being restrained, or the family would receive notification of such an incident. (Confidential behavior reports that the newspaper viewed corroborate this, with multiple incidents recorded in the year before he died). McAuliffe was troubled by the reports and said she once spoke with a caseworker about it.
On the day he died, Cains ate an egg salad sandwich and soup for lunch, according to an EMS record. A Human Services incident report said he became agitated during the meal, then put his tray away and said he needed to use the restroom.
A staff member accompanied him when Cains "became aggressive in the common area; that for his safety three staff placed David in personal restraint," according to the report. He "suddenly" threw up, defecated and turned blue, and workers started emergency measures, it said.
According to an EMS summary, first responders saw staff members performing CPR on Cains, who had no pulse and fixed, dilated eyes, they wrote. "Staff stated they found patient in hallway," and they attempted abdominal thrusts, the report read. It does not allude to the restraint holds.
A hospital record further complicates the narrative, with the physician writing that Cains had choked at lunch. He presented with a "chief complaint" of cardiac arrest, and was pronounced dead at 12:21 p.m., those documents show.
Information was limited "because the incident had occurred just minutes before," but the nursing staff did provide "pertinent information" to first responders, said Lesnick, the Human Services' spokesman.
Choking while eating is also what Cains' family thought happened at first, McAuliffe said. Her mother received a call from a Booneville staff member saying he choked and was taken to the hospital. It would be several days before the family learned -- via an investigative determination received in the mail -- of the physical restraint holds.
Had they known, their family would have requested an autopsy, she said.
"The staff who spoke with family conveyed the pertinent information available at the time, which was limited as the incident had just occurred," Lesnick said in response. "It was not apparent at that time that the hold contributed to the death, and the investigation later confirmed that the hold was done in accordance with safety protocols."
McAuliffe later approached the state's federally mandated monitor for people with disabilities to look into what happened. A Jan. 31 article in this newspaper detailed the group's findings, which similarly identified "discrepancies" in documents and called for improved investigations.
"We can only speculate as to the motivation behind such a cursory review of this death, but we do not have to guess whether the [Booneville Human Development Center] residents and their families deserved better than this," Disability Rights Arkansas' executive director Tom Masseau wrote in an Oct. 23 email to state officials with the report.
The family recently retained a North Little Rock firm, Green & Gillispie, to explore the matter, though no lawsuit has been filed. Previously, attorneys told the family that the state's sovereign immunity precedent, which makes it nearly impossible to sue the state for damages, presented a roadblock, McAuliffe said.
In lieu of the courts, claims against the state can be made at the Arkansas Claims Commission. The commission adjudicates the claims and can issue awards, which must be approved by the General Assembly if greater than $15,000.
CHANGES PLEDGED
Since last fall, Division of Developmental Disabilities Services and other Human Services officials have been consistent in promises to change and reduce restraints. A committee of advocates, physicians and other stakeholders met several times to consider the issue, and there has been some movement, a May report showed.
Changes include new tracking of cumulative data on personal restraint holds. Training on trauma-informed care began at most human development centers this year, with further training planned, Lesnick wrote in an email.
The agency purchased cameras to use at the Booneville Human Development Center -- the only such site that didn't have them -- in June, but construction contracts for a fiber-optic upgrade needed to run the devices is in the bidding and procurement process.
An expert who was asked to review the May report praised some of its points, especially a focus on training the staff on de-escalation techniques and the intent to set up video surveillance at the Booneville center.
"It's very important when you're investigating situations, including use of restraints, to be able to get that objective information, as opposed to what might be subjectively reported," said Stacey Aschemann, vice president of the independent monitoring unit at Chicago's Equip for Equality, another oversight group for disability-rights issues, in a phone interview.
McAuliffe said she hopes the state's plans include "real policy change."
"With all the response from the state, and the facility and the staff itself, that seems to me that it's not that big of a deal, it makes me wonder what's happening on a daily basis," she continued.
"If a death doesn't seem to be a big deal, how are you treating people on a daily basis with restraints that don't lead to death?"