Health

Pandemic cut a deep swath through NC’s centers for people with intellectual, developmental disabilities

COVID-19 was reported in more than 1,100 residents, many with profound disabilities, and staff. Public health leaders want to learn lessons from the rampage, which came at higher rates than in the other states’ facilities.

By Thomas Goldsmith

As Christmas 2020 approached, so did a surge of the novel coronavirus that was to bring more than 1,100 cases to North Carolina’s three state-run residential centers for some of North Carolina’s most vulnerable people.

Residents and staff at the state-run centers that house people with intellectual and developmental disabilities had seen 367 cases of COVID-19 among staff and residents by early December. But three months later, by the first week of March, the institutions had reported an increase of more than 270 percent. And a higher rate of infection took place at the N.C. centers than at equivalent centers in several other states, according to researchers tracking these outbreaks.

For public, private and nonprofit public health leaders charged with keeping vulnerable people safe, the onslaught of COVID-19 became a nightmare of growing intensity. The residents of facilities such as Murdoch Developmental Center in Granville County, with 458 beds, have “severe and profound disabilities” that mean many are unable to walk, communicate by typical means and frequently have uncontrolled seizures.

Facing a need even greater than that of the general population, administrators found that demand far outweighed the supply of brand new COVID-19 vaccines available for this population.

“At the very beginning, between January and February, we were only getting access to a few hundred vaccine doses each week,” Lisa Macon Harrison, public health director for Granville and Vance counties, said in a telephone interview. “And the demand for those few hundred doses was tens of thousands of people who qualified for those doses.”

Trying to protect residents and health-care professionals was “devastating” in the early days of the pandemic, said Harrison, who worked with state officials tasked with assigning vaccine-dose levels per county.

“I remember clearly being on the phone with the state on the day that we realized that there was an outbreak,” she said. “It was really a challenge to make sure that we fulfilled our role at the local level when we were completely understaffed and overrun with the onslaught of demand for vaccines that was happening.”

At the 358-bed Caswell Developmental Center in eastern North Carolina, six residents died of the disease in February alone, state records show. In addition to Murdoch and Caswell, the state operates the 285-bed Riddle Developmental Center in Burke. The facilities are formally called ICF/IID or Intermediate Care Facilities for Individuals with Intellectual and Developmental Disabilities.

“There definitely were large numbers of cases at all three facilities,” said Kristine Sullivan, supervising attorney for the investigations and monitoring team at the nonprofit advocacy group Disability Rights N.C.

Teamwork among federal, state and county public health officials has mostly contained outbreaks at the centers and their approximately 875 residents since April. But the unprecedented nature of the pandemic meant that the professionals who reacted to it received striking insight into possible outbreaks to come.

Shows the front of a three story brick building with a portico featuring white columns holding up a white pediment.
With 458 beds, the Murdoch Center, in Granville County, houses hundreds of North Carolinians who have profound developmental and intellectual disabilities. The COVID-19 pandemic meant that, at times, the facility struggled to keep residents safe from the virus. Photo credit: NC DHHS

“Certainly when we look back, we can see all the things we needed to do faster, better and stronger,” Harrison said. “But at the time we were running as fast and building as quickly and being as strong as we felt like we could every day, so it’s hard to answer that question now in hindsight.

“Certainly there are lessons learned and we’ll be talking about those lessons learned for the rest of my career, about ensuring we do a better job.”

These lessons may need to be learned – and implemented – more quickly than first anticipated as a new, more transmissible COVID-19 variant crosses North Carolina.

COVID “like wildfire” at Murdoch

Murdoch‘s campus is organized among eight divisions, once known as cottages, on a total of 240 acres. And with facility-wide cases spiking by more than a third from March to early May, one Murdoch division seemed more vulnerable than the rest.

“COVID came into one of the homes that happened to have some really medically fragile folks and it just spread like wildfire,” Sullivan said.

Administrators took appropriate action — all the measures that Disability Rights would have suggested, she said.

State Department of Health and Human Services spokeswoman Catie Armstrong said the Division of State Operated Healthcare Facilities (DSOHF) initiated steps including:

  • Prevention of the spread of COVID-19 through “rigorous infection control protocols” as recommended by federal and state agencies;
  • Keeping up with COVID-19 trends both in the DHHS facilities and in surrounding communities where infections can originate;
  • Educating staff about the risks of the virus, the ways that it spreads, and means for staff to avoid infection while at work and at home.

As in other long-term care facilities such as nursing homes, a major issue during the pandemic became staff reluctance at the developmental centers to accept the urging of DHHS to receive COVID-19 vaccines.

Who gets care at NC’s developmental centers? The Centers for Medicare and Medicaid Services is a federal program that certifies, regulates and oversees facilities such as Murdoch, Caswell, and Riddle centers. The agency works nationally with more than 100,000 people who have intellectual disabilities, and in most cases, additional physical problems. “Many of the individuals are non-ambulatory, have seizure disorders, behavior problems, mental illness, visual or hearing impairments, or a combination of the above,” according to the CMS description of such Intermediate Care Facilities for Individuals with Intellectual Disabilities. “All must qualify for Medicaid assistance financially.” — Centers for Medicare and Medicaid Services

Despite opposition from some staff members, a midsummer push by the state’s hospital association and six major hospital groups joined with state DHHS’s drive to increase staff vaccination levels.

DHHS recently announced that vaccinations at state-operated health facilities overall have reached all residents and 77 percent of staff.

Kody Kinsley, chief deputy secretary for health, said in a press release, “Our facilities are leaders in caring for people with complex needs, and our staff have heroically protected the people they serve and each other from Day One of this pandemic.”

“Mouthing behaviors”

Caring for people at the developmental centers, many of whom can’t walk or communicate typically, poses challenges under routine conditions, said Dr. Carrie Brown, chief medical officer for Behavioral Health and Intellectual and Developmental Disabilities for NC DHHS.

“There are certain areas on campus that support individuals who have a lot of mouthing behaviors, or that require a lot of physical assistance,” Brown said in a telephone interview.

“Mouthing means putting things in your mouth and not necessarily being able to resist the temptation to put things in one’s mouth. From an infection control standpoint that is challenging.”

Additionally, clinicians and staff at the developmental centers have had to meet the needs of people who move about on the floor, or those who can grab at staff masks, or face coverings, she said.

“There are individuals that require a lot of physical assistance and that does present a unique challenge in the situation of this particular virus,” Brown said.

In fact, a patient’s disability may keep him from understanding that pulling a mask from a staff member’s face will increase the risk for COVID-19 exposure, she said.

Cases, deaths by the numbers: During the pandemic, seven residents and two staff members died of COVID-19 at Caswell Developmental Center in Kinston, where there were 448 cases. Five more residents died at Murdoch Developmental Center in Butner, with 493 total cases, while the Riddle Center in Morganton marked 206 cases with no deaths.— NC Department of Health and Human Services

Where to now?

As a complex, more transmissible threat from the Delta variant takes hold, the previous outbreaks of hundreds of cases at each of the centers show how hard it is to fight the disease as it infects large concentrations of people. Even as the response to outbreaks continues, new approaches will be required. Harrison compared it to fixing a plane in flight.

“Anytime you see an outbreak like that with those numbers, knowing that it’s a group of vulnerable adults, it’s eye-opening and shocking,” said Heather Burkhardt, executive director of the state NC Council on Aging. “And you want to know that everything is being done to ensure their safety.”

As the pandemic continues its unpredictable course, the three state-operated centers remain home to hundreds of people with intellectual and developmental disabilities, some with complicated behavioral problems and/or physical conditions that cannot be treated outside the institutions.

“We put a whole bunch of people in one place and one gets sick, the likelihood is it’s going to get passed on,” said John Nash, executive director of the ARC of North Carolina. “This is not rocket science anymore. This is pretty straightforward. It’s going around.”

As in other contexts, the pandemic pointed out problems with health-care settings and methods already seen in less stressful times. Advocates for people with disabilities said that the state DHHS should never have put together so many people with developmental problems.

“This illustrates a challenge that is posed when you have a large number of individuals who are vulnerable in a congregate setting,” said Sullivan, from Disability Rights N.C.

Public health leaders must juggle several factors that can pull and tug at resources. In Murdoch’s case, one of those was a COVID-19 breakout at a federal Bureau of Prisons complex, also in Butner.

“If you look at our Epi curve of cases, there’s this huge blip of what was happening at the federal prison, right before all of that happened at Murdoch,” said Harrison, the local health director in Vance and Granville counties.

“So we had already been providing the prison with infection control, updates and consultation. At the time I had two communicable disease nurses, a total of 12 clinicians across all nurses and social workers and physicians and physician assistants.”

Delta changes the game

Potential keys to ongoing combat with COVID-19 in the time of Delta and other variants are:

  • Monitoring changes in the virus
  • looking out for other developments that can affect treatment
  • openness to new approaches
  • making sure that adequate human resources and crucial hard supplies are available and financed

The pandemic, already changing shape, will compel the worlds of science and medicine to keep examining the disease’s short- and long-term impact on people with disabilities, said Jennifer Mahan, director of public policy at the Autism Society of North Carolina.

“We don’t really understand what other things might be going on,” Mahan said in a phone interview. “Many people with autism have co-occurring conditions. They have underlying genetic issues that we don’t even know how they might be affecting their infection rates.

“It’s being studied, but it’s certainly not something that is easy to study amid the focus on getting a vaccine and people’s exposure. This is all too new.”

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