Deaths of people with intellectual disabilities in Pa. went unreported, says federal regulator

Companies that help Pennsylvanians living with intellectual disabilities failed to report two deaths and thousands of other “critical incidents” in 2015 and 2016, according to an audit by a federal inspector general. The same audit concluded that state officials failed to ensure those companies followed the rules.

Critical incidents involve things like abuse, neglect, an emergency room visit or the death of a developmentally disabled person who receives Medicaid benefits, according to the report by the U.S. Department of Health and Human Services Office of Inspector General. Medicaid rules require such incidents to be reported to the commonwealth within 24 hours, and state law requires suspicious deaths to be referred to police.

In failing to oversee those caretakers, known as home and community-based providers, Pennsylvania was out of compliance with federal Medicaid rules, the OIG says in the report made public Wednesday.

Abuse, neglect and deaths

Home and community based providers received $2 billion in taxpayer funds last year in Pennsylvania, according to the state budget.

Because the state failed to monitor them, state regulators weren’t able to help people who may have been mistreated, said Nicole Freda, regional inspector general for audit services.

“The community based providers did not report thousands of the critical incidents, emergency room visits and hospital stays,” Freda said. “As such, with that information not being available, the state wasn’t able to act on certain things.”

In one example, a man with intellectual disabilities who was in the care of a community based provider was taken to the hospital where he was found to be dehydrated. The next day, the same man returned and was diagnosed with “bedsores and recurrent dislocation of the pelvis.”

Those two hospital visits—never reported to the state—came less than two weeks after a previous critical incident that involved criminal neglect.

In that incident, the man’s mother pushed him in his wheelchair to a park and abandoned him. The man, who is called “the beneficiary” in the report, sat there for five days.

“According to the medical record, law enforcement found the beneficiary covered by a tarp, leaves, and sticks and bound so that the beneficiary could not communicate. Law enforcement brought the beneficiary to the hospital, where he was diagnosed with adult nutritional neglect and assault (criminal neglect),” the report states, adding that the man’s mother had previously tried to drown him by leaving him in a bathtub with the water running.

If the two hospital visits had been reported, someone might have checked in on this man to make sure there was no further mistreatment, Freda said.

In two instances, the state failed to ensure a provider notified police and the state Attorney General about a suspicious death.

In one, outlined in the report, a person with intellectual disabilities died after choking on food. A care worker called 911, but the person died later in the hospital. The provider and the state determined the death was the result of neglect, but they never contacted police.

“Because this case was not referred to law enforcement for further review and investigation, the state agency did not ensure that other Medicaid beneficiaries with developmental disabilities were adequately protected” from similar incidents, the report says.

The OIG’s office said the audit was spurred by Connecticut Democratic U.S. Senator Christopher Murphy’s 2013 letter to the U.S. Health and Human Services Inspector General, in which he raised concerns about deaths tied to abuse, neglect and medical errors. Similar audits have been done in several other states.

Companies remain secret

Both the OIG and the state Department of Human Services declined to name any of the community-based providers that failed to report critical incidents.

At the U.S. Dept. Health and Human Services, spokeswoman Erika Yepsen said company information was excluded from the report to prevent a potential breach of patient information. The state Department of Human Services did not respond to a request for more information about the companies.

Rehabilitation and Community Providers Association CEO Richard Edley said he hasn’t received the report and didn’t know what providers failed to report critical incidents. Nonetheless, he said, the report’s findings were troubling.

“You can’t have much more of a vulnerable population than people with intellectual and developmental disabilities,” Edley said. “So, all protections are needed, and we support that.”

Many improvements have been made since the incidents in the report happened in 2015 and 2016, he added. “The Office of Developmental Programs within the Department of Human Services has spent a lot of time with providers looking at reporting standards, reviewing statistics, reviewing trends.”

No system is perfect, but community-based care provides more oversight than institutional settings, said Sherri Landis, executive director of The Arc of Pennsylvania, which advocates for people with developmental disabilities. People in a community setting interact with a lot more care providers who are all mandated to report critical incidents.

Landis noted that community based providers assisted 43,000 people in 2018. About 14,500 of those people live in group homes. Many more are able to live with family members or on their own through home and community based programs.

The federal report becomes public at a time of heightened debate over the best ways to care for intellectually disabled people. The state Department of Human Services last August announced a plan to close two state centers, Polk in Venango County and White Haven in Luzerne County. The state legislature has voted to keep them open. Democratic Gov. Tom Wolf has said he’ll veto the bill if it reaches his desk.

Landis said she feared that people would see the findings of the report within the context of that discussion.

“There’s no argument that the community system can be improved,” Landis said. “But it’s the best choice, and we’re constantly working to make it better.”

State following OIG recommendations

The Office of Inspector General has made recommendations on how to improve services and will follow up with the state, said spokeswoman Erika Yepsen. The federal Centers for Medicare and Medicaid Services will also monitor Pennsylvania and will later report back to the OIG, Yepsen said.

In an emailed statement, Department of Human Services spokeswoman Ali Fogarty said for the most part the state agrees with the inspector’s recommendations and is following them.

“The Department of Human Services (DHS) is committed to continuous improvement in our oversight responsibility to ensure that people served by these programs are receiving the care they need and deserve. Over a period of several years, DHS has worked closely with the OIG on its multi-state review of systems for monitoring and reporting critical incidents involving Medicaid beneficiaries with developmental disabilities.”

Fogarty said new regulations will go into effect in February “that will strengthen the department’s ability to enforce incident reporting requirements and implement sanctions for noncompliance, expand the types of incidents that require investigation by a department-certified investigator, and require review and analyses of incidents and conduct and document a trend analyses at least quarterly.”