COFAR blog

Although we have been getting data and responses from the Department of Developmental Services (DDS) to questions about COVID-19 testing results in group homes, no one in the administration is saying why the testing has been going slower than projected, and no one seems concerned about speeding it up.

According to the latest data we have from DDS, which was as of Thursday (May 21), the Department’s mobile testing provider, Fallon Ambulance Service, had tested 16,200 residents and staff, most of them in group homes throughout the system.

While that may sound like a lot, Fallon, a Quincy-based company, began testing on April 10, and has been averaging under 400 tests per day since then. DDS Commissioner Jane Ryder stated early on that Fallon had the capacity to perform up to 1,000 tests per day.

At this point, six weeks into the testing program, Fallon has tested about 65% of what we had estimated to be a total of 25,000 residents and staff in the DDS system. As we understand it, there has been no retesting of any of those persons living or working in the group homes, although we have heard that some people have been periodically retested in the Wentham and Hogan developmental centers.

Our estimate of the total number of staff in the DDS system might be low. WCVB Channel 5 news reported last night that there are a total of 34,000 staff working in the DDS system. If that is the case, Fallon has tested only 35% of the total number of residents and staff in the system.

The number of residents tested, in fact, stayed the same between Monday (May 18) and Wednesday. As of Monday, 5,600 residents and 10,200 staff had been tested throughout the DDS system.

As of Wednesday (May 20), DDS data showed the number of residents tested had remained at that same 5,600 level, while 100 additional staff had been tested. It would appear from those numbers that between Monday and Wednesday of this week, Fallon was averaging only 50 tests a day, and the company tested only staff during that time.

Despite the slow pace, the actual results of the testing continue to be important and concerning. More than 3,300 of the total staff and residents tested — or nearly 21% — have been found to have COVID-19. And the DDS data shows that more than 50% of the provider-run group homes in the state have now reported cases of the virus in their residences.

That data only underscores the importance of conducting the testing on a more timely basis.

We first raised a concern about the apparently slow pace of the testing process about a month ago. We also expressed a concern at that time — the first of many times since — that the testing process was voluntary for staff in the group homes. Apparently little or nothing has been by the administration to address either of those concerns.

Neither DDS or EHS commenting so far on the slow pace of testing

When we got the data from DDS that as of Monday, only 15,800 persons in the DDS system had been tested, I emailed DDS Ombudsman Christopher Klaskin to ask if Fallon was still the only company doing the testing. We heard reports that at least one other ambulance company was interested in supplementing the testing done by Fallon.

Klaskin wrote back to me on Wednesday, stating that Fallon “is the only provider contracted to perform mobile testing for DDS and several other EHS (Executive Office of Health and Human Services) agencies.”

Given that Fallon had by Monday been on the testing job for 39 days and was thus averaging only 405 tests a day since starting, I asked Klaskin whether any other companies had expressed interest in supplementing the testing, and why Fallon was still the only company doing the work. Klaskin declined to respond to those questions, saying Fallon is contracting for the work with MassHealth, which is part of EHS, and that I should direct my questions to them.

So, on Wednesday afternoon, I emailed EHS Secretary Marylou Sudders with essentially the same questions, and asked whether the state was seeking to contract with any additional companies to undertake the testing. Thus far, I haven’t gotten a response either from Sudders or from Jessica Lyons, the communications manager for MassHealth, whom I had also emailed on Wednesday.

Also on Wednesday, I filed a Public Records request with EHS/MassHealth and DDS, asking for the contract with Fallon for testing in the DDS system, and any related procurement documents and memoranda that address the need for the procurement, the scope of the services, the projected costs, timelines, and capacity of the company, and any applications filed by any other companies to undertake or supplement the testing program.

Testing is a critically important part of the process of getting us through the pandemic with as little additional loss of life as possible. The Baker administration has made testing a priority, and Massachusetts has, in fact, acquired a reputation as a leading state with regard to testing its residents overall.

But when it comes to ensuring the speediness and thoroughness of testing of persons with intellectual and other developmental disabilities and their caregivers, the state has once again fallen short. And no one in the administration appears to be willing to acknowledge or discuss it.

While testing of staff for COVID-19 remains voluntary in group homes funded by the Department of Developmental Services (DDS), state guidelines appear to require testing of staff in small facilities in which at least some individuals are symptomatic.

Meanwhile, a state senator, who filed a bill (S.2657) to make testing of staff mandatory in nursing homes, is reportedly supporting mandatory staff testing in the DDS system as well. A legislative aide to Senator Jamie Eldridge said Eldridge supports amending his bill to make testing mandatory for DDS group home staff.

Eldridge’s legislative aide said he notified the Legislature’s Public Health Committee of the senator’s support for that change. Eldridge’s bill is currently in the committee.

While DDS started a mobile program more than a month ago to offer tests to every resident and staff member in its residential system, DDS has stated that the tests are voluntary for staff. In addition, DDS has no current plans to undertake periodic re-testing of either residents or staff.

We have repeatedly raised the concern that staff are potentially the main source of introduction of the virus to group homes, in which residents have been locked down from nearly all visitation since mid-March.

As a result, even as the rate of COVID-19 cases among all residents of the state has started to taper off and Governor Baker has introduced a detailed plan to reopen the state’s economy, the number of COVID-19 cases in the DDS system appears to be continuing to rise rapidly.

As of May 11, the last day for which DDS provided data to us, 1,000 provider-run homes in the DDS system were reporting positive COVID-19 cases. That is nearly 50% of the total number of provider-run homes in the system, and that was up from 900 homes reporting positive cases as of May 7.  We are asking DDS for more up-to-date figures.

Despite the voluntary nature of the staff testing in the DDS system, COVID-19 testing guidelines from the Department of Public Health (DPH), dated May 13, state that “all individuals” who have “close contact” with persons showing symptoms “should be tested” for COVID-19.

Under DDS’s own guidelines, group homes appear to be a type of facility in which close contact is unavoidable. Those guidelines define “close contact” as “living in the same household as a person who has tested positive for COVID-19, caring for a person who has tested positive for COVID-19, or being within 6 feet of a person who has tested positive for COVID-19 for about 15 minutes.”

As a result, the DPH guidelines would seem to require that all staff be tested if they are working at least in those group homes in which one or more residents are symptomatic.

Also, guidelines from the federal Centers for Disease Control (CDC) identify “workers in congregate living settings” as a “high priority” for testing if they themselves have symptoms of COVID-19. Other persons in that high-priority class, if they have symptoms, are residents in those facilities and hospitalized patients.

DDS, however, is not requiring group home providers to test staff even if the workers have symptoms. While those staff are precluded from working in the residences while they are ill, they can return to work three days after recovering from their illness without necessarily getting tested.

Guidelines have some apparent contradictions regarding staff testing

Despite the clear-sounding statements in the guidelines regarding staff testing, DDS may consider that it has some leeway in complying with those statements because some seemingly contradictory language can also be found in those same documents.

For instance, while the DPH guidelines state, as noted, that anyone in a residence who has close contact with a symptomatic individual should be tested, the same guidelines also contain the following statement:

Asymptomatic individuals can be recommended for diagnostic testing at the discretion of their healthcare provider, a state agency, or an employer. Individuals are encouraged to confirm with their insurance whether the test will be covered.  (My emphasis)

That language in the latest DPH guidance seems to directly contradict the previously noted language in the same document that states that “all individuals” having close contact with persons who are symptomatic “should be tested.”

Meanwhile, despite the CDC’s guidelines that refer to staff with symptoms as a “high priority” for testing, another set of CDC guidelines allows infected healthcare staff to return to work without necessarily getting tested. Those latter guidelines and guidelines from the Baker administration’s COVID Command Center both appear to leave it to the discretion of the provider or individual state agencies as to whether to re-test staff returning to work after they have recovered.

Both the CDC and the state COVID Command Center refer to “test-based” and “symptom-based” strategies for returning to work.

Guidance sent by DDS last month to all group homes appears to adopt the “symptom-based strategy” for allowing a staff worker who has COVID-19 symptoms to return to work after they have recovered without being tested. Under the DDS guidance, that worker would be prohibited from working in the group home for three days after recovering from the illness. If the staff worker were to be tested at any point and the test was positive, that worker would be excluded from work for seven days from the date of the test as long as the worker showed no symptoms.

In neither of those cases does the DDS guidance require testing or re-testing for COVID-19 before that worker can return to the group home or to one of the state’s two developmental centers.

DDS has stated that “very  few” staff have so far refused to cooperate with the testing program; however, we have received a number of reports from family members of some group home residents that none of the staff in those homes, or very few of them, were being tested.

The situation is different in nursing homes in which staff testing is required if the nursing homes want to receive grant money made available last month by the administration.

DDS Ombudsman Christopher Klaskin maintained last week that DDS “continues to follow the CDC and DPH (state Department of Public Health) guidance for testing in our group homes.”

Klaskin added that both the CDC and DPH “differentiate between nursing facilities (which are health care facilities) and congregate care settings (like group homes), so operational protocols issued for these two systems are different.”

In our view, however, the CDC guidelines do not appear to differentiate between healthcare facilities and congregate care settings, but rather state that workers in both types of facilities either are or potentially are priorities for COVID-19 testing.

As a result, I wrote to Klaskin on May 13, asking why DDS does not at least require re-testing of group home staff before returning to work after those persons have previously tested positive or had symptoms.

In a related development, we have written to the chairs of the House and Senate Ways and Means Committees and to a key senator, asking for a change in a separate bill (S.2695) that would require DPH to publicly report testing data on residents and staff in DDS group homes.

The bill, as currently written, requires DPH to collect and report data on residents and staff in nursing homes and other DPH long-term care facilities as well as correctional centers. But the bill does not mention DDS group homes.

As we’ve said before, we are concerned that even as Governor Baker cautiously reopens the Massachusetts economy based on encouraging data on the incidence of COVID-19 in the population of the state as a whole, the administration does not appear to be showing the same caution or concern for clients in the DDS system.

At the very least, DDS should adhere to written federal and state guidelines regarding testing of group home staff.

We are encouraging people to call the Public Health Committee, and urging them to support an amendment to Senator Eldridge’s bill (S.2657) that would make testing of DDS staff mandatory.  The phone numbers are (617) 722-1532 for the office of the Senate chair of the committee, and (617) 722-2130 for the House chair.

It appears that the Baker administration is examining what has been termed “encouraging” testing and hospitalization data on COVID-19 in considering whether to reopen the Massachusetts economy.

We hope the administration will consider, among other things, testing data in the Department of Developmental Services (DDS) system. If not, this could be another example of the apparent disregard the administration has shown for the risk the virus poses to people with intellectual and other developmental disabilities.

Over the past weekend, the Massachusetts State House News Service reported that the administration was looking at  “a number of (COVID-19) metrics considered key to resuming economic and social activity…” That data “showed positive signs” in the most recent report from the Department of Public Health (DPH ), the news service stated.

According to the News Service, the number of COVID-19 patients hospitalized in Massachusetts has declined in 10 of the last 13 days.

But the data isn’t encouraging in the DDS group home system. So, we are concerned that reopening the economy may add to the risks that residents and staff are facing in DDS group homes, in particular. If numbers of COVID-19 cases are still rising in the DDS system, it would have safety implications for all residents in the state.

Data from DDS show that the number of DDS provider-operated group homes reporting residents testing positive rose from 800 to 900 homes (out of 2,100 homes) in a four-day period, from May 4 to May 7. Eight additional residents and four additional staff tested positive at the Wrentham Developmental Center during that period, while the numbers at the Hogan Regional Center held steady.

Meanwhile, DDS is continuing to test residents and staff more slowly than planned, and the Department still has not made testing of staff mandatory.

Rate of testing in DDS group homes may be stalling

While testing all residents in all demographics is crucial in determining whether and when to reopen the economy and end the lockdown, the rate of testing in the DDS system does not appear to be meeting early expectations. In fact, it may actually be slowing.

Fallon Ambulance Service started testing group homes and developmental centers throughout the DDS system a month ago, and was supposed to be ramping up to 1,000 tests a day.

However, as of  April 29, Fallon was performing an average of only 405 tests a day, according to numbers we’ve analyzed from DDS. A week later, as of May 7, Fallon was actually performing an average of only 396 tests a day.

DDS reported that as of May 7, Fallon had done about 11,000 tests since starting on April 10. We are estimating that there are as many as 25,000 residents and staff in the group home system.

So, at that rate, it would still take Fallon at least another month to test the entire DDS system, and that doesn’t count retesting, which they apparently aren’t doing at all. In other words, more than half of the total residents and staff in the system still apparently have not been tested even once.

On a related note, we received a response on April 29 to a Public Records request to DDS for records on testing timelines and plans for testing all residents and staff in the system. DDS said they have no such records. They also have no records regarding the total number of staff in the provider system.

Seeking mandatory testing of staff

We also submitted written testimony today to the Legislature’s Public Health Committee to urge the adoption of legislation that would make it mandatory for staff in DDS facilities to be tested for COVID-19. As we have reported, staff are currently not required to be tested in the DDS system — a situation that leaves the residents in the system vulnerable to infected staff members who may well be asymptomatic.

The Public Health Committee is currently considering a nursing home safety bill (S.2657), filed by Senator Jamie Eldridge, which would require testing of all nursing home staff for COVID-19. We are urging the committee to amend the bill to include a provision for mandatory testing for all staff working in DDS-funded group homes.

As we understand it, the administration actually issued a requirement last month that all staff in nursing homes be tested. However, no such testing requirement has been imposed for staff in DDS facilities.

Questions about compliance with DDS guidance

We are also concerned about a possible lack of compliance among DDS group homes with the Department’s guidance on admission of staff and possibly visitors to those facilities, and on social distancing among other issues concerning care and conditions.

We received a report that staff from one group home took one or more residents to another of the provider’s group homes during the ongoing lockdown, and may have also admitted several people into a group home with no clear purpose for being there.

Late last week, we asked DDS whether the Department has policies or procedures in place for monitoring compliance by group homes with the Department’s guidance regarding the admission of staff into facilities, social distancing, proper use of personal protective equipment, and related issues.

A one-page guidance document sent last month to all providers by DDS states that there will be no one admitted to any facilities except for medically necessary reasons. Any visitors or staff must be screened and have no flu-like symptoms or a fever over 100 F. In addition, all staff should wear face masks during their shifts.

While it is important that DDS has issued this guidance, it means little if the Department has no way of determining whether the management and staff in the widely dispersed system are complying with it.

In sum, the well-being and even survival of people in the DDS system depends on the quality, speed, and thoroughness of the ongoing COVID-19 testing. The current state of that testing in the system raises many areas of concern for us.

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.