COFAR blog

Even as the Baker administration reports daily on COVID-19 infection rates among most of the population in Massachusetts, numbers of infected persons with intellectual and developmental disabilities appear to be being kept under wraps.

Information is coming out sporadically and anecdotally from the media and individuals on the ground.

The Boston Globe and other outlets reported this week that as of Tuesday, 276 people in Department of Developmental Services (DDS) residential settings statewide had tested positive as had 321 staff. Nine people receiving services from DDS had died from COVID-19.

Among the anecdotal information we’re getting:

• While testing was completed last Sunday of residents at the Wrentham and Hogan Developmental Centers, the staff at Wrentham apparently did not get tested, as the administration had reported. DDS Commissioner Jane Ryder said late yesterday that testing of the Wrentham staff will now take place this weekend.

• WCVB reported yesterday (April 17) that 40% of residents in three units at the Hogan Center had tested positive for the virus, according to the Massachusetts Nurses Association. The union said that 44 residents and 55 staff members have also tested positive.

While the Department of Public Health (DPH) provides daily updates on deaths and infections due to COVID-19 throughout the state, information has only been provided sporadically by the administration, and on a selective basis to the media, about the situation in the DDS system.

The number of deaths and COVID-19 positive cases in the DDS system appears to be rarely if ever mentioned in press briefings held by Governor Charlie Baker and Health and Human Services Secretary Marylou Sudders.

This raises a question whether the administration is placing a lower priority on protecting the DDS population from the virus than it is placing on other long-term care populations such as the elderly and even chronically ill.

Joe Corrigan, a COFAR member and member of the Wrentham Center Board, expressed his frustration in an email yesterday to Sudders and and DDS Commissioner Jane Ryder. He wrote,

Tell us where the decisions are being made. Tell us what the tipping point is for getting real and complete attention to (the Wrentham Developmental Center) and all DDS.  Tell us where our loved ones stand in the pecking order vs. the poor souls at soldiers homes, nursing homes.

COFAR has requested information on numerous occasions on testing results in the DDS system from Sudders and Ryder, and has gotten only limited answers and often no response. We were forced on Thursday to file a Public Records Law request with EOHHS, DDS, and DPH for records on the timeline for testing in the DDS and DPH systems.

Staff not tested at Wrentham Center

As we reported on Wednesday, the administration has engaged Fallon Ambulance Service, a private company, to carry out the testing throughout the DDS group home system and apparently in the state-run developmental centers.

However, contrary to reports from the administration, testing of staff has apparently still has not occurred at the Wrentham Center. The administration had reported that all residents and staff in the Hogan and Wrentham Centers had been tested last Sunday.

Earlier this week, a Wrentham staff member told COFAR Executive Director Colleen M. Lutkevich that, “at this time only the residents (at Wrentham) were tested.” The staff member added in an email that direct care staff were “doing a wonderful job of taking care of the residents at this time, but the reality is they are also the ones that will be bringing the virus in.  There have been several residents that have tested positive, but there still has not been any testing of the staff.”

Yesterday, a DDS official told Lutkevich that Fallon Ambulance said they “would work with us to come back to Wrentham to test the staff there,” but that he had “no specifics on when they may schedule us.” Late yesterday, however, Ryder informed Lutkevich that the testing would take place this weekend.

In his email to Sudders and Ryder, Corrigan pointed to the continued lack of testing of  staff at the Wrentham Center as a critical problem:

 I have no doubt that (administrators and staff at the Wrentham Center) are doing much with little in terms of distancing, etc. but please tell me what is the sense of testing residents without testing the staff who come and go daily and have to be the ones who brought in the virus to the already affected and, no doubt, growing number of victims.

Crisis highlights problem with privatized care

The testing problems are potentially compounded in the DDS group home system. Some 8,800 residents are dispersed around the state in more than 2,000 group homes, most of which are operated by corporate nonprofit providers to DDS. We are estimating that there are some 14,000 to 15,000 direct-care staff serving those residents. All of those people have become potential or actual targets of the virus.

No information has so far been forthcoming from the administration on how long the Fallon testing program will take in the group homes. Fallon is reportedly capable of testing between 500 and 1,000 individuals per day.  We are already hearing anecdotal reports about delays in scheduled testing by Fallon in some group homes.

Fallon is facing the prospect of having to test at least 22,000 residents and staff  in the residences.  That apparently doesn’t count the clinicians, physical and occupational therapists, nurses and others who may still be visiting those homes and might not be there when the testing is being done in a particular home.  We also have no information on testing plans for staff that is not working the shifts at the time of the mobile testers are there.

Group home model presents logistical problems

The COVID-19 crisis appears to show how potentially poorly the privatized care model is at protecting people during pandemics. DDS was reportedly able to test all residents and staff in the state run developmental centers in one day,  with the apparent exception, however, of staff at the Wrentham Center.

Due to the highly decentralized nature of the privatized group home system, it is probably impossible to do the necessary testing within a relatively short time frame unless the administration was to call in the National Guard or another source of large-scale assistance. This raises the question whether the administration considered that, and if so, why they rejected it with respect to the DDS system, but have adopted it for the DPH nursing homes.

It further appears that within the privatized community-based system, highly compensated executives should have been doing strategic planning for the potential occurrence of a pandemic such as this one, and apparently did not do that planning.

A single testing site for group homes might make more sense

COFAR President Thomas Frain suggested that given the wide dispersal of group homes around the state, it might make more sense to test all group home residents at one site such as Gillette Stadium in Foxborough.

Frain suggested that if testing at a site such as Gillette were made available and each group home took just one resident per day to the site for testing, all residents and direct-care staff could potentially be tested in as little as 10 days. That is based on Frain’s calculation that there are some 2,500 group homes in total, containing some 25,000 residents and staff.

“Instead of ambulances traversing the commonwealth, they could have put all of those ambulance people at a single testing site swabbing people,” Frain said. Some people who could not be transported, would have to be tested at their residences, and Fallon could do that.

In the final analysis, we think a quote from the late U.S. District Court Judge Joseph L. Tauro is unfortunately highly relevant to the situation today. Judge Tauro wrote:

The (intellectually disabled) have no potent political constituency. They must rely on the good will of those of us more fortunate than they, and the constitution…