COFAR blog

Throughout the COVID-19 pandemic, we have questioned overly restrictive and sometimes contradictory family visitation policies imposed by both the Department of Developmental Services (DDS) and its residential providers.

What seems surprising is that now, with most residents in the system apparently having been vaccinated, those restrictive and contradictory policies appear to be continuing.

In response to a query sent to our members last week, several said they were continuing to be sharply restricted or even prohibited entirely from entering group homes in which their loved ones are living. Some of those family members are nevertheless allowed to take the residents home for visits.

As we have reported, while most residents of group homes and developmental centers in the DDS system appear to have been vaccinated, a significant percentage of staff have not been. Yet, the restrictions on visitation or contact appear to be aimed exclusively at family members and guardians of residents.

“To hold families and guardians to a higher standard than direct care is unfair and makes no sense,” said Thomas J. Frain, COFAR Board president. “Family visits at this time should not be any more restrictive than they were before the crisis. But some residential managers are clearly using COVID restrictions as a weapon to control family access to their loved ones.”

In an email sent Monday (May 17) to DDS Commissioner Jane Ryder, I asked why visitation restrictions were still ongoing in residences in which all residents have been vaccinated. Ryder, to date, has not responded.

DDS visitation guidance, dated March 19 of this year, continues to give providers discretion to limit the number of visitors and restrict visits under any circumstances the providers deem pose a threat to safety. The guidance document states that any such restrictions should not be arbitrary.

While the March guidance does allow visitors who are fully vaccinated to meet with vaccinated residents in their rooms, it states that providers must restrict all visitation if any staff are infected or presumed infected within the past 14 days. It apparently doesn’t matter under the policy whether all residents have been vaccinated or not.

Family members and guardians cite arbitrary restrictions

A number of other COFAR members said this past week that they have been subjected to differing and sometimes seemingly arbitrary restrictions on visitation.

Colleen Lutkevich, COFAR executive director, said all residents in her sister’s house on the Wrentham Developmental Center campus have been quarantined from May 11 through May 21 because two staff tested positive for COVID. Yet, all residents have been vaccinated, she said, and none are currently testing positive.

Frain said he, himself, was subjected to what appeared to be an arbitrary restriction by staff after his brother experienced a medical emergency in his group home in March. Frain had entered the residence along with ambulance personnel to attend to his brother.

When the emergency was over, Frain said, he was singled out by two staff members and told he alone must leave by the back door of the residence because he hadn’t been tested on entering for COVID. Frain said he complied with the order, but feels it was unnecessary and was possibly an effort to personally humiliate him as a family member.

One COFAR member said that even though her son has been vaccinated — and she believes all other residents of his group home have been vaccinated as well — she and her husband have not been allowed to enter the residence. Nevertheless, she said, they are allowed to take their son home for overnight visits.

“It makes no sense,” the COFAR member wrote in an email. “At least we can be with him, so I really can’t complain, but it would be nice to see what is going on in the house.”

As is the case with a number of families, the COFAR member said she needs to go through her son’s clothes for the seasonal change to spring.  Because of the no-entry restriction, the staff brought his belongings to the backyard. “I cannot bend over,” she wrote, “so it was difficult.”

Yet we were told that in another group home even unvaccinated family members were allowed inside to their loved-one’s bedroom to change his wardrobe to spring.

Another COFAR member, who wanted to change her son’s clothing from winter to spring, said she is currently allowed to enter the residence once a week.  She too can take her son home at any time.

Another provider requires a week’s notice prior to visits by family members. In yet another case, visitors are allowed in the house, but only for a maximum of 30 minutes.

COVID infection rates not correlated with restrictions on family visits 

State data show the rate of COVID infection in the DDS system among both residents and staff declined earlier this year, reaching lows at the end of March. But since then, as recent weekly online state facility reports show, the decline has stalled, and rates of infection have held steady.

As of May 11, 10 residents and 14 staff in the state-operated group home system continued to test positive for COVID. As of that date, 37 residents in provider-run group homes and an unreported number of staff continued to test positive.

There were as many as 5 deaths among residents in the group home system due to COVID in the seven days prior to May 11.  No data on COVID-related deaths are available for staff.

While administration officials have not responded to our requests for comment on the matter, we think the decline in the COVID rate in the DDS system from January through March was largely due to the vaccinations of most of the residents and at least some staff, which began in January.

Although data is lacking, we think the continuing presence of at least some COVID in the system since the end of March may be due to the apparent continuing resistance of a significant number of staff to getting the vaccine.

As far as we can tell, residential DDS providers have continued to impose the same types of restrictions on family visits that they imposed prior to the first vaccinations in January. So, we don’t see that those restrictions as related to the decline in COVID rates since January or to the continuing presence of infection in the system.

It’s time, as Tom Frain said, for DDS to issue new, unambiguous guidance to providers to restore visitation policies to what they were prior to the pandemic.