RICHMOND, Va. β A new report from the Disability Law Center of Virginia reveals alarming trends in sudden and unexpected deaths among Virginians with intellectual and developmental disabilities who receive state-licensed services, with advocates calling for stronger regulations to prevent future tragedies.
The report, which analyzed three years of incident reports from facilities licensed by the Virginia Department of Behavioral Health and Developmental Services, found that nearly half of the reviewed cases involved staff who delayed or failed to perform CPR or call 911 during medical emergencies.
"I believe the majority of them were preventable, at a minimum their odds of survival could have been improved," said Colleen Miller, who heads the Disability Law Center of Virginia.
The analysis uncovered troubling patterns in emergency response protocols. In many cases, staff members called supervisors before emergency services or even left the premises before calling 911.
"We found an alarming number of deaths that seemed to be related to poor staff response to the incident, either a failure to call 911, calling their supervisor first to find out if they should call 911, sometimes leaving the premises before calling 911," Miller said.
The report also highlighted repeated safety violations by some providers who faced no meaningful sanctions for their failures. Staff members repeatedly ignored feeding protocols designed to prevent choking, leading to preventable deaths, according to the report.
"We saw situations where the staff of the provider failed to follow the feeding protocols repeated times and had no serious sanctions against them for that," Miller said.
Many deaths involved individuals who had special protocols specifically designed to prevent choking on food, yet supervision failures led to fatal incidents.
"There were a number of deaths related to choking for people that had special protocols to prevent them from choking on their foods," Miller said.
The report found that death certificates often incorrectly attributed deaths to the person's disability or mental illness, conditions that Miller said are not fatal.
"There was a very high number of these attributed to things like cerebral palsy or mental retardation and those are not terminal conditions, fatal conditions," Miller said.
To address these issues, Miller is asking the state to require regular medical emergency drills in all licensed programs and enforce stronger penalties for providers whose neglect endangers lives.
"It's not really until you accumulate them and look at them as a pattern that it really strikes you how horrible this is, how awful this is, and how preventable this is, with the patterns of the things we identified these are many of them deaths that did not need to happen," Miller said.
We asked DBHDS for a response to the report.
Spokesperson Lauren Cunningham sent us the following statement:
"DBHDS recognizes the seriousness of these findings and is grateful for the dLCVβs partnership as we work together to ensure the health and safety of individuals with developmental disabilities in Virginia that are receiving licensed services. We have implemented a number of activities to address the findings, and we are planning to update our licensing regulations to address further issues. We remain committed to working together with the dLCV, providers, and caregivers on improving care and outcomes for Virginians and their families."
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