Information on the Coronavirus and Persons with Developmental Disabilities

We have established this new page on our website as a resource for families seeking information about the coronavirus and how to advocate for their their loved ones in the care of the Department of Developmental Services (DDS).

We will be updating the page periodically.

Press Release, August 6, 2020

EOHHS emails show apparent consensus on reducing public reporting of COVID-19 data in congregate care facilities

Despite the passage of legislation in June to increase public reporting requirements for COVID-19 in congregate care facilities in Massachusetts, top human services administrators in the Baker administration appear to have reached agreement at that time on a proposal to reduce transparency regarding COVID-19 test results in those facilities.

That apparent consensus in internal emails reviewed by COFAR appears to have led to decisions in June to stop publicly reporting cumulative COVID testing data and not to report test data on provider staff working in group homes for persons with intellectual and developmental disabilities in the state.

The email discussion is concerning because it appears indicative of an overall lack of transparency by the administration in its response to the pandemic, particularly with respect to Department of Developmental Services (DDS) clients.

COFAR received a total of eight emails last week in response to a Public Records Request filed with the Executive Office of Health and Human Services (EOHHS) on June 25. Our request was for records bearing on an apparent decision to change the reporting in EOHHS’s online Weekly State Facility Reports from cumulative or historic COVID data to “current cases.” 

The emails refer to a “proposal for our public data reporting going forward.”

Apparently as a result of the reporting change, only the number of currently positive DDS clients are now listed in each EOHHS weekly report, and the number of deaths is only listed for DDS patients who died in the previous seven days. In contrast, the administration provides daily online reports showing both current and cumulative positive test results for individuals throughout the state, including the number of individuals tested.

The reductions in reporting requirements for congregate care facilities appear to have been implemented at the same time that Governor Baker was signing legislation into law that would increase reporting requirements about COVID-19 infection rates in congregate care facilities.

The EOHHS emails include the following:

  • An email dated June 13 in which Monica Sawhney, MassHealth chief of staff, stated that all EOHHS agencies “should continue to collect vendor staff and client-level data (outside of facilities/congregate care) internally, but do not need to report it to EOHHS” (emphasis in the original)
  • A June 11 email in which Sawhney wrote to nearly a dozen EOHHS officials, stating, “…we are moving away from cumulative data and toward snapshot/weekly.”
  • A June 10 email in which Martha Farlow, ACO Policy and Contracts senior manager at MassHealth, wrote, “I have also gotten questions about whether agencies need to continue the “congregate care” report. I think that could be sunsetted.”

Both the recommendation to stop reporting cumulative data and to exempt test results of vendor staff from public disclosure appear to have been adopted.COFAR sent an email query for comment on August 3 to Health and Human Services Secretary Marylou Sudders, but Sudders hasn’t responded to it.

More information about this matter can be found in our blog post here.

General information about the coronavirus and DDS

If our loved ones are lucky enough to have close relationships (and unfortunately some do not), these are existential relationships and should be taken as seriously by DDS, providers, and staff as are all other protections.

Information about positive tests

If a resident of a DDS facility tests positive, or if a resident is exposed to the coronavirus and exhibits signs of fever or respiratory infection symptoms, cough, shortness of breath, or sore throat, we recommend that family members and guardians be informed immediately.

Pursuant to Massachusetts General Law, c. 19B, s. 1:

DDS shall take cognizance of all matters affecting the welfare of the persons with an intellectual disability or persons with a developmental disability.

A primary function of DDS is to make sure its residents are protected, whether in a state-operated group home, a corporate-operated group home or an Intermediate Care Facility (ICF).

DDS regulations (115 CMR s. 9) defines a “serious risk of harm” as “a significant exposure to serious physical or serious emotional injury.”

If your loved one tests positive for, or is exposed to the coronavirus, you, as a guardian, have a right to know about it.

Keeping residential facilities clean

We are recommending that DDS make every effort to ensure that:

  1. All residential facilities are relentlessly cleaned;
  1. All staff are repeatedly reminded about hand washing;
  1. Windows are kept open, weather permitting, so that the group home residents and staff are breathing fresh air;
  1. Residents are taken outside into the fresh air and sunshine, weather permitting.

Information from the Department of Developmental Services (DDS)

The following is a link to information provided about COVID-19 on the DDS website:  https://www.mass.gov/news/coronavirus-update-for-individuals-and-families

In addition, the following is a link to additional information about the virus from the Department of Public Health: https://www.mass.gov/info-details/covid-19-guidance-and-directives#for-congregate-care-programs-

We have raised concerns that the information and guidance available from DDS and other state agencies is unclear and inconsistent. We are urging DDS to develop a single, comprehensive plan for all contingencies involving residents of all types of facilities in the DDS system.

You can also send questions or concerns to us by emailing either Colleen Lutkevich at collen.lutkevich@cofar.org, Thomas J. Frain, Esq. at tjf@frainlaw.com, or David Kassel at davidskassel@gmail.com. We will forward your concerns to DDS.