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 June 2, 2020

Residents in DDS facilities test positive for COVID-19 at a higher rate than general population

Residents with intellectual and other developmental disabilities in group homes have tested positive for COVID-19 at a higher rate than the general population in Massachusetts since the end of April, according to an analysis by COFAR.

The numbers appear to underscore the importance of testing all staff and maintaining safe conditions in the homes, particularly as the administration begins to loosen lockdown restrictions in coming weeks.

COFAR analyzed cumulative testing data provided by both the Department of Developmental Services (DDS) and the Department of Public Health (DPH). DDS tracks testing data for residents and staff in its residential facilities, and DPH tracks and publishes testing data for the general population on a daily basis.

COFAR found that on a cumulative basis, the COVID-19 positive rate of DDS residents was 18.4% between April 23 and May 26, while the positive rate in the general population was 12.5% during that same period. That’s a 47% higher positive rate for DDS residents.

The number of deaths in DDS group homes has been lower on a percentage basis than in nursing homes, but that death toll is continuing to rise. As of May 28, there have been 87 deaths in the DDS system, up from 78 deaths ten days earlier.

It is not clear why the death toll has been relatively low in the DDS system. But it should not come as a surprise that the conditions that have caused the quick spread of the virus through nursing homes are similar to those that exist in DDS-funded group homes. Group homes are small, household sized facilities in which DDS residents have been locked down since March. As such, a virus can spread quickly in a group home especially if it is introduced by an outside source — namely staff who are, in many cases, not being tested.

In the period between April 23 and May 26, Fallon Ambulance Service tested a total of 4,500 residents in both DDS group homes and the two developmental centers. During that time, 826 DDS residents tested positive, according to the DDS data.  That appears to be a cumulative positive test rate of 18.4%.

During that same period, a daily DPH website document shows that 320,243 members of the general population were tested in Massachusetts, and that of that number, 39,928 had tested positive — a cumulative positive test rate of 12.5%.

Meanwhile, a May 21 letter from the Disability Law Center in Massachusetts, a partially federally funded nonprofit organization, echoed many of the concerns COFAR has raised with regard to testing and safety conditions in the DDS system. The DLC letter to Dan Tsai, assistant secretary for MassHealth, called for mandatory testing of staff in the DDS system, better training of staff in using Personal Protective Equipment in group homes, and better reporting of data by DPH.

More information about the methodology of our analysis of the DDS and DPH testing numbers 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.