As Massachusetts began to reopen a few weeks ago, there was one place above all where Craig Kinney longed to return: his group home for adults with intellectual and developmental disabilities.
Kinney is 33 and has Down syndrome and a medical history that puts him at risk for more severe outcomes from COVID-19. He’d been living out of a suitcase at his mom’s house for weeks to protect him from the higher risk of infection in group living, but he was ready for a return to normalcy. He and his mom, Sandra Heller, were just waiting to decide when it was safe for him to go back.
He returned to his private group home earlier this month. One way to make that decision, Heller said, was to track the number of cases and deaths being reported in group home settings.
“We were waiting to hear when the state started opening up, whether numbers increased,” Heller says.
For families and residents, transparency is crucial to determine the safest housing situation, but last week the state shifted the way it is reporting cases and deaths in Massachusetts group homes in ways that families say has removed key information.
The Department of Public Health over time has expanded the level of detail in daily state reports on total COVID cases and deaths in long-term care facilities like nursing homes. But for group homes, the new reports now provide less detail than they used to.
Beginning in May, the Executive Office of Health and Human Services published a dashboard — updated weekly — that tracked the total number of resident cases and deaths in Massachusetts group homes. The data was generated by the Department of Developmental Services, the state agency that supports residents living with intellectual and developmental disabilities and provides oversight in state- and vendor-operated group home settings.
But last week, the state changed the data dashboard to focus on client deaths from the past week and total current client cases, providing a snapshot of current conditions at facilities instead of providing an overview of past cases and deaths. Families and the public now must request total client cases and deaths in facilities directly from DDS, though the archives of past reports are now available online. As of June 19, DDS reported that there have been 1,581 resident cases and 99 resident deaths in Massachusetts group homes overall.
The new weekly report, for example, shows zero current infections among residents of the DDS Hogan Regional Center in Hathorne, zero deaths in the past week and 50 client recoveries. It makes no mention of the fact that the center has had 55 COVID cases and five deaths, which were reflected in prior reports.
“Why would you stop recording the number of people that had been COVID-positive and, worse yet, the number of people who had passed away from COVID?” asked Rick Glassman, director of advocacy for the Disability Law Center.
Together with advocates from several disabuiility rights organizations, Glassman met with DDS last week to discuss deficiencies in the agency’s current pandemic policy, including concerns about how the department reports COVID infections.
Currently, the state tracks staff COVID cases and deaths only in state-operated group homes, where more staff have been infected than residents. As of June 19, DDS reported 1,817 staff COVID cases and five staff deaths. But 90% of residents with intellectual and developmental disabilities live in private group homes, where total staff cases and total staff deaths are not reported.
Advocates said this is an infection control issue because staff are not required to be tested for COVID-19 to work with residents, they can work for multiple facilities, and they’re allowed to work with both COVID-positive and negative clients in the same shift. To protect residents, DDS follows public health official guidance, testing staff for symptoms before entering the facility and requiring staff members to wear a facemask when working with residents.
“The top priority of the Department of Developmental Services is the safety of individuals served and our staff during the COVID-19 pandemic,” said DDS ombudsman Christopher Klaskin.
But photos the Disability Law Center shared with DDS last month suggest not all staff got that memo. The pictures show various staff members not wearing masks while assisting residents during the pandemic. Two photos show unmasked staff members hovering closely over residents. A third photo shows a staff member with her mask pulled down while in the same room as a resident.
Since lockdown started in March, visitation has been banned in Massachusetts group homes. Healthcare workers and support staff became the only people coming and going from private and state-operated group homes where approximately 9,000 residents live. In the meeting with DDS, advocates recommended tracking staff infection data and requiring staff testing like the state does in nursing homes. The standards are stricter in nursing homes, the state said, because nursing home staff must meet additional requirements, including mandatory testing for 90% of staff, to qualify for state funding. Group homes are not bound to the same mandate.
Since April 10, DDS has tested more than 12,300 group home staff members and 6,900 residents for COVID-19 through mobile testing, but staff testing remains voluntary. Glassman said that DDS told the advocates the state will not make testing mandatory for group home staff, but the agency will consider strategies to improve PPE compliance. Glassman and other advocates recommend doing random spot checks and establishing penalties for non-compliance with PPE guidance.
A recent study showed adults with intellectual and developmental disabilities are more likely to have underlying conditions that can lead to higher risk for more severe outcomes from COVID-19. They’re also nearly twice as likely to die from the disease than adults without intellectual and developmental disabilities between the ages of 18 of 74.
“Given the shared residential setting that community-based services often operate, anyone in the DDS residential system can request testing, in addition to those who meet public health testing criteria,” Klaskin says.
He said that DDS continues to consult with the Department of Public Health and Commonwealth Medicine on current best practices to train staff and monitor infection control in group homes.
“These practices that have been put in place during the COVID-19 pandemic will remain in place as long as necessary to protect individuals and staff.”
Klaskin also said that the Disabled Persons Protection Commission is available as a third party to report complaints.
But self-advocate Donna Jay, a regional officer for Massachusetts Advocates Standing Strong, said residents living in group homes feel voiceless and fear retaliation for complaining about pandemic standards of care. She said residents also see a double standard: people with disabilities are required to wear masks and be tested, while staff — who are infected at higher rates — are not.
“People are not listening to us,” Jay said.
When Irene Tanzman found out that someone in her son Isaac’s group home tested positive for COVID-19, she suspected a staff member was responsible for spreading the deadly disease. She said she didn’t realize the standards were so lax until Isaac’s housemate got infected.
“That's when I found out that the COVID-19 testing is voluntary for staff members,” Irene says.
For Isaac, who is 32 and has severe autism and Crohn’s disease, there was concern that he might get infected. In his small group home, there are four residents and the healthy residents were quarantined in the same house as the sick resident.
Isaac tested negative, but Irene said his private group home provider never identified who brought COVID-19 into the house. Failure to track staff cases concerns advocates and leaves family members with nothing to do but wonder where the disease will spread next.
“Whoever it is that brought it in was probably someone who wasn't tested,” Irene said. “And that person is going back into the community and infecting others.”
Ashley Belanger is an intern at the New England Center for Investigative Reporting at WGBH News.