COFAR blog

Questions linger over a change in the way COVID-19 testing is being done in the Department of Developmental Services (DDS) system, including whether the change contains a loophole for staff testing and whether it could mean less publicly reported data.

The change in testing policy was instituted last month by the Executive Office of Health and Human Services (EOHHS), which has taken charge of the testing program. It appears DDS and possibly other agencies under the EOHHS umbrella will have little or no involvement in managing the testing.

Baker administration officials are not answering many of our questions about the new testing policy, which is outlined in an EOHHS directive last month to all residential DDS providers. The directive requires the providers both to undertake their own COVID testing for the first time and to include all residential program staff in that testing requirement.

Under the EOHHS directive, residential providers must now engage their own testing providers and labs, and will be reimbursed by the state for the costs. The directive changes a policy in the DDS system under which a single company, Fallon Ambulance Service, has been providing mobile testing to group homes around the state.

While we support a portion of the new policy requiring that residential staff undergo “baseline testing,” a number of questions have not been answered:

1. Will residents and staff actually undergo follow-up biweekly “surveillance” testing, or will an apparent loophole in the EOHHS policy prevent surveillance testing in many regions of the state?
2. Will day program staff avoid a testing requirement altogether, under the EOHHS policy?
3. Will the results of the staff testing be made public, and who will report those results?

The apparent testing loophole

While the EOHHS directive specifies that baseline testing for staff and residents in all DDS group homes and developmental centers be done by September 30, it is not clear whether biweekly retesting, or “surveillance testing,” will actually go into effect in all regions of the state.

The EOHHS directive establishes a “regional transmission threshold” in order to determine the need for surveillance testing. Each of five regions of the state is identified as either a “high transmission” or “low transmission” region for COVID-19.

High-transmission regions are those that have a weekly average transmission rate equal to or greater than 40 cases per 100,000 residents. Low-transmission regions are those that have a transmission rate less than 40 cases.

According to the directive, providers located in high-transmission regions must undertake the surveillance testing. However, providers in low-transmission regions are required only to do surveillance testing when there are individuals in their facilities who show symptoms of the virus.

The transmission rates in each region are published weekly by EOHHS. As of the most recent weekly report, dated September 16, only one of the state’s five regions met that 40-cases threshold. That was the northeast region, which had 41 new cases. The western region had a low of 15 cases, followed by the central region with 21 cases, the southeastern region with 23 cases, and the Boston region with 31 cases.

Thus, as of this month, only the northeast region currently meets the threshold of positive cases among residents that would apparently trigger the ongoing surveillance testing requirement.

This threshold requirement sounds to us like a loophole that at least currently avoids surveillance testing in most of the DDS system. DDS staff, in particular, will only need to be tested once in most regions of the state, and will not have to be retested unless the rate of infection rises significantly among the general population in the region.

It is not clear, however, that the rate of COVID infection in group homes and other DDS facilities is directly related to the rate of infection in the general population. Without regular retesting of staff, in particular, it will be difficult to identify possibly rising infection rates in the DDS system.

Day program staff left out of testing requirement

DDS staff are also left out of the new EOHHS testing policy in another respect. As we have reported, the EOHHS directive did not include staff working in day programs. It is unclear what the reason is for that omission or whether extending the directive to day programs is under consideration.

We expressed concern to DDS Commissioner Jane Ryder in an email on August 28 that a failure to include day program staff in the directive appears to leave a major hole in the testing program in the DDS system. Ryder has not responded to our message.

Community-based and other types of provider-run day programs were reopened in early August as data began to indicate declining rates of the viral infection in the state. But the administration acknowledges that a risk of infection remains in the day programs.

Although day programs have been reopened, some residential providers are not sending residents to them because of the COVID infection risk. At this time, we don’t actually know how many day programs are operating or how many people are attending them. But whatever that number is, there is apparently no requirement that staff in those programs be tested.

Public reporting requirements may be reduced

As noted, in requiring that DDS residential providers arrange on their own for COVID testing of residents and staff, EOHHS is ending the Fallon Ambulance Service mobile testing program.

While that mobile testing program has been ongoing, DDS has provided us, upon written request, with cumulative testing data for clients and staff. That data has also shown the rate of testing being done by Fallon. It is not clear that that same level of data will continue to be reported after September 30, in part, because it does not appear that DDS will have testing data after that date to report.

On September 16, DDS ombudsman Christopher Klaskin told us that from September 30 on, “providers are required to report progress directly to (EOHHS) for completion of baseline staff testing – so they (EOHHS) are collecting that data point moving forward.”

Klaskin also said that “updated numbers moving forward are only reflective of that data point and will not include surveillance testing.” He did not respond to my query as to whether this means that results of surveillance testing will not be reported publicly by EOHHS.

EOHHS weekly online testing data do not show results for provider staff 

Adding to our concern about the potential for reduced reporting of COVID test results is EOHHS’s ongoing policy of not publicly reporting the results of COVID tests done on provider staff.

While online EOHHS Weekly Facility Reports show the number of clients in DDS-funded group homes and developmental centers who are currently positive for the virus, the reports do not include the testing results of staff of group homes run by DDS corporate providers. For reasons that have never been explained to us, the EOHHS reports only provide results for testing of staff in the DDS’s much smaller network of state-run group homes.

As noted, DDS has provided us up to now with the results of provider staff tests.

As we have reported, top EOHHS administrators discussed proposals in June for reducing public reporting of COVID testing results in DDS and other congregate care facilities, including the reporting of staff testing results.

Agencies not complying with Public Records Law on mandatory staff testing records

In general, as we have reported, information about COVID testing in the DDS system has been difficult to get from the administration. We have been asking since May for internal emails and other records from EOHHS, DDS, and the Department of Public Health (DPH) on mandatory staff testing.

To date, we have received zero records from those agencies in response to our request.

On July 24, the state’s public records supervisor ordered EOHHS to clarify whether they possessed any records responsive to our request, and to respond to our request “as soon as practicable.” To date, we have received no communication from EOHHS.

In sum, the jury is still out, in our opinion, as to whether EOHHS has adopted a serious and effective COVID testing policy for the DDS system. As of now, we have substantial doubts that it has done so.

Facing criticism, the Baker administration appears to be backtracking on a requirement that guardians sign a form releasing providers from legal liability if persons with developmental disabilities contract COVID-19 in newly reopening, state-funded day programs.

It is not clear whether the forms will be eliminated entirely, however, or just changed; or whether forms that guardians have already signed will remain in effect.

Department of Developmental Services Commissioner Jane Ryder emailed COFAR last week, saying the administration will “revise guidance” on reopening the day programs “to eliminate the reference to the acknowledgment of risk form.” She added that the Department “will communicate this to its provider community.”

Ryder didn’t explain the change further.

Executive Office of Health and Human Services (EOHHS) guidance on reopening the day programs, dated July 2, does not actually appear to refer to an “acknowledgment of risk form.” As a result, it isn’t clear whether EOHHS and DDS are actually eliminating the form or revising it in some way.

In her August 10 email to COFAR, Ryder maintained that the release form was “was intended to prompt a discussion of individual risk factors (in reopening the day programs), not operate as an assumption of risk or release from liability” (emphasis in the original).

On August 12, I emailed Ryder, seeking clarification of her statements, but she has not responded.

In the wake of data showing declining rates of COVID-19 infection in the DDS system, the administration gave the go-ahead last month to providers to reopen day programs that had been shut since March. At the same time, however, EOHHS has required guardians to sign the release form, which states that those guardians:

 …acknowledge the contagious nature of COVID-19 and voluntarily assume the risk that you or your loved one may be exposed to or infected by COVID-19 by attending a (provider-run day) Program…

The form adds that the guardian “understands…that this risk may result from the actions, omissions or negligence by you or your loved one, any (provider) employee, and/or other clients at the program.”

COFAR and a number of guardians raised concerns over the release form, maintaining that it appears intended to shield providers from liability claims even when negligence is involved. At least two residential group home providers told COFAR last month they were either declining to send residents to the day programs or recommending that they not go until a COVID-19 vaccine is found.

EOHHS guidance doesn’t appear to refer to a release form

Although Ryder stated that EOHHS plans to eliminate a reference in its day program reopening guidance to the “acknowledgement of risk form,” the guidance appears to refer instead to a “Risk/Benefit Discussion Tool,” and does not appear to state that guardians must sign it.

The guidance states that day program providers must:

Provide all participants/caregivers/guardians with the Risk/Benefit Discussion Tool. After identifying participants who wish to return to the program in-person, providers should discuss the Tool with all participants/caregivers/guardians prior to their in-person return to the program. The provider must consult with them to determine if the benefits of the participant returning to the program outweigh the risks (my emphasis).

Among the additional questions that we and other advocacy organizations have are what the impact has been on clients whose guardians have declined to sign the release form. In an interview with COFAR when the release forms were first issued in late July, one day program provider said that in those cases, day program services would be “provided remotely.”

However, a number of family members and guardians maintain that it is not possible to provide day program services remotely or online. They contend that families are being forced to choose between waiving their right to sue providers that fail to protect their loved ones from COVID-19 or depriving their loved ones of all day program activities.

Is the administration now saying that families and guardians will be able to send loved ones to day programs without signing away those rights?  As is so often the case with this administration when it comes to COVID-19, we’re left with more questions than answers.

The administration of Florida Governor Ron DeSantis has had an abysmal record of dealing with the spread of COVID-19 in his state.

But last week, even DeSantis took a critical step in protecting persons with intellectual disabilities that the Baker administration in Massachusetts has so far refused to take.

According to the News Service of Florida, group homes and other facilities in that state will be required to start testing staff members every other week for COVID-19, under an emergency rule issued by the DeSantis administration. The administration will provide test kits free of charge to the residential providers.

Meanwhile, the Massachusetts Department of Developmental Services (DDS) has continued to allow COVID-19 testing to remain voluntary for staff working in its residential facilities. This has sparked continuing concern among guardians, family members and advocacy organizations, including COFAR, that without mandatory testing, staff will remain a source of potential infection of large numbers of DDS clients.

In addition to Florida’s decision to make staff testing mandatory, Florida’s use of testing kits could prove more efficient than the mobile testing system in Massachusetts in which a single company, Fallon Ambulance Service, has been traveling around the state in order to test residents and staff.

The testing process in Massachusetts has slowed to a virtual crawl since mid-May, and thousands of residents and staff still remain untested in the DDS group home system.

Beyond that, the Massachusetts DDS has no publicly disclosed plans or apparently even a coherent policy regarding periodic re-testing of either residents or staff.

In a statement last week accompanying the announcement of the staff testing requirement in Florida, Barbara Palmer, director of the Florida Agency for Persons with Disabilities (APD),  termed the requirement “a vital step to help ensure the safety of our employees and customers.”

In a communication with us on a separate issue yesterday (August 10), DDS Commissioner Jane Ryder stated that new “testing guidance for Congregate Care settings is expected to be issued shortly.” Ryder provided no specifics regarding that guidance.

Massachusetts DDS data indicates thousands still not yet tested

A total 13,100 staff in the DDS system had been tested as of July 28, according to DDS data. But it is unclear what percentage that number is of the total number of staff working in the system.

DDS apparently doesn’t know the total number of staff in the group home system. In an April 29 response to a Public Records Request we had submitted for that information, DDS responded that there were approximately 2,664 full-time-equivalent staff working in state-operated group homes.

But the DDS response stated that the Department had no records showing the number of staff working in the much larger provider-operated group home system. In order to get that information, the response stated, DDS would have to review provider contracts, which would require “substantial expenditure of employee work time.”

We have assumed there are between 14,000 and 15,000 provider staff working in group homes — an estimate based on a ratio of about 1.6 direct care staff per resident. That number, however, does not include clinicians and other floating staff.

Based on our estimate, some 2,000 or more direct-care staff and an undetermined number of clinicians and other floating staff have still not been tested for the virus in Massachusetts.  In addition, some 1,200 residents remain untested.

Despite that, based on DDS data, it appears that the testing rate by Fallon Ambulance had slowed to as low as 36 tests per day as of July 28. Between July 14 and July 28, Fallon tested only 200 residents and 300 staff.

No plans or timelines

As we have noted before, the Baker administration does not appear to have an overall plan or even a coherent policy for testing for the virus in the DDS system.

In the April 29 response to our Public Records Request, DDS stated that the Department had no records containing projected timelines for COVID-19 testing of  residents and staff in DDS residential settings.

We have frequently asked DDS for their policy on testing and retesting of residents and staff, given that residents in certain group homes have been retested multiple times while others, as noted, have never been tested. DDS has never responded to those questions.

In addition, we learned in June that despite a stated intention in April to test all residents and staff in the DDS system, DDS has actually been allowing providers to opt out of the Fallon Ambulance testing program altogether.

Moreover, DDS appears to have been largely relying for the past several months on provider reports of symptomatic residents, rather than on actual testing, in determining the number of persons in the system who are currently considered to be infected with the virus.

It is unclear whether the new testing guidance that Commissioner Ryder referred to yesterday will address any of those issues.

Legislature has also failed to push for mandatory staff testing in Massachusetts

Despite paying some lip service to the importance of staff testing, the state Legislature has done little to bring it about.

State Rep. Kay Khan, the House chair of the Children, Families, and Persons with Disabilities Committee, claimed in July that she had been advocating for increased testing in the DDS system. But Khan then apparently falsely told a COFAR member that requiring mandatory testing of staff was not allowed by statute, and that the Massachusetts General Laws would need to be changed through legislation for that to become policy.

There appear, however, to be no statutes in Massachusetts that would prohibit DDS from requiring that staff be tested. In an email to Khan on July 8, I asked if she could provide a citation of the statute she was referring to. Khan did not respond to my query. 

On May 18, we reported that state Senator Jamie Eldridge, who had filed a bill to make testing of staff mandatory in nursing homes, was reportedly supporting mandatory staff testing in the DDS system as well.

A redraft of Eldridge’s bill by the Public Health Committee did add language that would appear to include group homes in the measure; but the bill itself only states that the Department of Public Health “may require” that staff either be tested for “certain diseases” or have their temperature taken as a condition of reporting for work.  And even that weakly worded legislation has remained in the Senate Ways and Means Committee since June.

We recognize and appreciate that Massachusetts has led the way for much of the nation in its general response to the COVID pandemic. But as we’ve said before, Massachusetts has not shown the same commitment toward protecting persons with intellectual and developmental disabilities from the virus. And we, as a state, may even be in danger of falling behind a lagging state such as Florida in that regard.