COFAR blog

Although the pace of mobile testing for COVID-19 of residents in group homes funded by the Department of Developmental Services (DDS) appears to be picking up, the testing of staff in those facilities is reportedly haphazard.

That is because it remains voluntary for staff in DDS-funded group homes to be tested even as the Baker administration has moved to make testing of staff in nursing homes mandatory.

This is one of a number of signs that the administration is treating people with intellectual and other developmental disabilities differently than it treats the elderly and other vulnerable populations. The administration, in fact, appears to be placing a lower priority on protecting people with intellectual and other developmental disabilities from COVID-19 than it places on other populations.

We have raised repeated concerns that:

• COVID-19 testing is not mandatory for staff in DDS-funded group homes, and there are currently no efforts underway to retest either residents or staff in the group homes on a periodic basis.
• Fallon Ambulance Service is increasing the pace of its testing in DDS facilities, but is still apparently too small a company to undertake even an initial round of testing in a timely manner. As of May 4, Fallon had tested roughly 10,000 residents and staff — a rate of about 400 tests a day since the testing program began on April 10.
• The National Guard, meanwhile, is reportedly being used to test residents and staff  in nursing homes and other long-term care facilities overseen by the Department of Public Health (DPH).
• The state Department of Public Health (DPH) posts daily updates on the numbers of deaths in Massachusetts and the number of persons infected with the coronavirus. But while these updates include numbers of persons in “long-term care facilities,” we have been informed that DPH defines long-term care facilities as nursing homes, rest homes, and skilled nursing facilities. DDS group homes are not included in that definition.
• There is no inclusion in the DPH updates, much less a breakout, of the numbers of  persons in the DDS group homes testing positive. Group homes are nevertheless long-term care  facilities that function as the homes of close to 10,000 persons throughout the state with I/DD.

On April 28, State Representatives Kay Khan and Josh Cutler, the House chair and vice chair of the Legislature’s Children, Families, and Persons with Disabilities Committee, expressed concerns similar to ours in a letter to Health and Human Services Secretary Marylou Sudders. Representatives Khan and Cutler stated that:

….information about the impact of COVID-19 on the Department of Children and Families, the Department of Developmental Services, the Department of Mental Health and the Department of Youth Services congregate care facilities is lacking. The number of positive cases and deaths due to COVID-19 are rarely mentioned in (Governor Baker’s) press briefings.

We have never, in fact, seen DDS Commissioner Jane Ryder or any other DDS officials present at any of these briefings.

DDS-funded group home testing of staff remains voluntary

The state engaged Fallon Ambulance Service last month to undertake mobile testing of an estimated 25,000 residents and staff in DDS-funded group homes and in the Hogan and Wrentham Developmental Centers.

Last week, Christopher Klaskin, the DDS ombudsman, said that the Department was “exploring” the possibility of making testing of staff mandatory, but also said that “given contractual relationships with unions across state government, the development of any mandate of this type requires input and approval.”

Klaskin did not specify whose approval would be needed. When I pressed him on that question in a subsequent email, he responded that “unions are one of several stakeholders whose input (not approval) would be needed for this type of requirement.”

We are continuing to seek an answer from DDS as to whose approval would be needed to institute a mandatory testing requirement for staff.

Klaskin also maintained that “very few” staff in group homes have refused to be tested. However, we received reports this past weekend from family members of residents in three group homes who said that while the residents were tested there, few, if any, staff were tested. Each family member was told that the reason for that is that testing of staff is voluntary.

Laura Watkins, whose son Kyle is in a group home in Framingham, said on Friday that all eight residents of the facility were tested last Wednesday and that seven of them, including her son, tested positive.

Watkins said she was told by the house manager that Fallon didn’t test any of the staff in the group home. She estimates that there are as many as 25 staff, including day program staff who are now supposed to come into the home for day activities.

Michael Person, whose daughter Maria is in a state-operated group home, said he was informed on Sunday that residents of the facility were tested on Thursday. He was told that Maria had tested negative. When he asked about testing of the staff, he was told no staff were tested because it was voluntary.

“I do not understand this,” Person said in an email. “There are three shifts going in and out of the group home, seven days a week, and it is optional for them to get tested. Does that make any sense?”

In an email to COFAR on Saturday, the mother of a resident in another group home said she was similarly told that while residents of the facility had been tested, none of the staff, other than the house manager, were tested because testing of staff is voluntary. Yet, she said, the staff “are the only people who could carry the virus into the home…It makes no sense to me.”

Continuing lack of personal protective equipment and training in DDS group homes

Watkins said she believes a factor in the spread of the virus to all or nearly all of the residents in her son’s group home was a lack of personal protective equipment (PPE) in the residence. She herself brought in handmade masks for the staff on March 22.

It was only on April 16, she said, after the state issued revised guidance, that the provider, the Justice Resource Institute, provided N95 masks to staff in the home, but no other PPE. Even so, the staff were still short eight masks.

It’s not clear that the staff are using gloves either, Watkins said. She suggested that the state’s COVID-19 Command Center send teams into all of the group homes to train all staff on PPE and other issues. “I’m finding that nobody knows what to do,” she said.

Number of group homes reporting positive cases is growing

As of May 4, a total of 890 DDS-funded group homes were reporting positive COVID-19 cases — a positive test rate in the group home system of 38%. That was up from 770 homes reporting positive cases as of April 29, just five days earlier. The positive test rate at that time among all group homes was 33%.

Also as of May 4, a total of 1,127 residents and 1,223 staff in the group homes had tested positive, while 48 residents and 69 staff had tested positive at the Hogan Regional Center, and 41 residents and 42 staff had tested positive at the Wrentham Center.

There had been 44 deaths due to the virus in the DDS system as of May 4, up from 37 deaths as of April 29.

Crisis standards of care are a step in the right direction

On April 23, I listened in on a teleconference of the state Public Health Council’s monthly meeting, which touched, of course, on a range of issues relating to COVID-19 and the protection of residents throughout the state from this disease. In one respect, it was heartening to hear during that discussion that in developing crisis guidelines, an effort was made to level the playing field in allocating resources such as ventilators to persons who are seriously ill with the virus.

As we understand it, the rule now for getting a ventilator if there is a shortage is that there has to be a reasonable probability that the person will be able to survive for five years. One of the doctors on the teleconference call said this change was adopted to give equal access to ventilators and other “scarce resources” to people with disabilities.

While we appreciate that acknowledgement of the importance of equal consideration of persons with intellectual and other disabilities, we hope we can impress upon the administration the anguish that family members and guardians are feeling during this crisis.

DDS families are struggling with restrictions — as are family members of virtually all persons in long-term care facilities — on having any contact with their loved ones. But the DDS families have the added stress that comes with feeling that, overall, the administration has dismissed their concerns.,

At the very least, we think there needs to be mandatory testing of all staff, and periodic retesting of all staff and residents in the DDS system. In addition, the families in the DDS system are entitled to the same level of daily information that is being made available to families of all other long-term care residents.