COFAR blog

[Update: We have been informed by DDS that they are preparing a statement in response to our concerns about the lack of information on COVID-19 cases in group homes, and are hoping to get it to us by today (April 7).  A DDS official said the Department has information on the number of COVID-19-positive cases in group homes. That information is reported to them by providers and local boards of health, but it is not part of the daily Department of Public Health report.]

The state Department of Public Health posts daily updates on the numbers of deaths in Massachusetts and the number of persons infected with the coronavirus.

But virtually no information is available on the number of persons with intellectual and developmental disabilities who have died or been exposed to the virus.

As a result, we asked DPH Commissioner Monica Bharel in an email today (April 6) for a breakdown showing the numbers of deaths of residents of group homes and Intermediate Care Facilities (ICFs) funded by the Department of Developmental Services (DDS).

The daily DPH updates include numbers for residents of “long-term care facilities,” but those facilities are defined as nursing homes, rest homes and skilled nursing facilities.  Other forms of congregate care, including DDS group homes and public housing, are not part of that total.

So far, we received a response to our email from Marylou Sudders, Secretary of Health and Human Services, essentially denying our request for that more specific information on DDS facilities. We had cc’d Sudders in our email.

“At this time, the daily reporting is what the Department of Public Health that is made public is what is able to be reported,” Sudders wrote back. (Yes, that was her verbatim reply.)

Sudders added that she was referring us “to EHS (the Executive Office of Health and Human Services, which is actually her agency) and DDS for more specific information regarding congregate care facilities.”

In a further response to Sudders’ message, COFAR Executive Director Colleen M. Lutkevich wrote that, “This appears to be a circular conversation, and my frustration as the guardian and sibling of a severely intellectually disabled resident in DDS care… grows by the hour.”

Lutkevich noted that “we have consistently been unable to get accurate information from either DDS or EHS, the agency that you, yourself oversee.”

To the extent that DDS has given out information on deaths and infections, it has been in response to queries from news outlets. In those cases, the information has been given directly to those media outlets, not to the public as a whole. DDS has not responded to our own repeated requests for information.

Families and caregivers seeking information

We have been raising concerns for the past two weeks that the roughly 10,000 residents of DDS group homes are particularly vulnerable to a possible flare-up of the coronavirus.

Every day, we receive calls or emails from family members and persons working in the DDS system saying they are getting little or no information or guidance from the department regarding the crisis.

While the daily updates from DPH on deaths and infections is enormously helpful to the public, that information has limited value to persons with loved ones in the DDS group home system, in particular.

The posted DPH data break the numbers of confirmed cases down by county, age, gender, and in what DPH terms “long-term care facilities,” which are defined as nursing homes, rest homes, and skilled nursing facilities.

In our original email today (April 6) to DPH Commissioner Bharel, we noted that the April 4 DPH update stated that 480 residents of “long-term care facilities” had tested positive for COVID-19, and that confirmed cases were reported in 94 such facilities.

As of April 5, that number in DPH long-term care facilities had risen to 551 persons in 102 facilities.

We specifically asked for daily updates on numbers of deaths and confirmed cases in DDS-funded group homes and ICFs.  “The lack of that information has contributed to uncertainty and anxiety among families and caregivers of DDS clients,” we stated.

Most group home residents not being tested

In her response to Sudders, Lutkevich noted that DDS is not testing group home residents unless they have COVID-19 symptoms.  But many DDS residents cannot advocate for themselves, she said.

Nursing home residents can say when they do not feel well and usually can take their own temperature.  “They can accurately report,” Lutkevich said. “Our folks cannot, and so between the disability they face and DDS’s decision, or inability, to test, this leaves our loved ones ripe for the taking by COVID-19, leaving no evidence behind of why they are ill or have passed or if they are in danger in the first place.

“There is no time here,” Lutkevich’s email added.  “Our loved ones may be dying without anybody reporting that they died from this virus.  That seems very wrong to me.  DDS homes are being targeted with historical neglect and irreverence in the face of a deadly disease.”

Information coming from the media

The latest numbers we have on cases and deaths in the DDS system have come from the media. WGBH reported on April 3 that two DDS clients had died from COVID-19 infections.

In addition, DDS told WGBH News that as of April 3, an additional 67 individuals receiving DDS services and 71 employees working for DDS providers had tested positive for COVID-19. The news station noted that was a roughly 50% increase in positive cases among DDS residents from figures reported to WCVB just one day before; and a nearly 70% increase in infections among employees.

Lutkevich maintained that in a broadcast by WCVB last week, it appeared that Arc Mass Executive Director Leo Sarkissian, who appeared on the broadcast, had “very specific and granular information about statewide group home infections.” But Lutkevich noted that Sarkissian is not a state official and “is not empowered by the law to disseminate healthcare information.  He is being informed by corporate providers who have a relationship with Arc Mass.

“So, in the present environment,” Lutkevich added, “corporate providers are sharing this very important information amongst themselves, but families and guardians and the public generally have no idea as to the coronavirus’s impact on the DDS group home system.

“I urge all of you to rethink your reply and to do the right thing to help our families,” Lutkevich concluded.

This is not a time for the administration to hunker down and circle the wagons. They should be doing all they can to share information and show families and workers that they care.