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DDS day programs appear to be left out of the staff testing requirement for COVID-19

August 31, 2020 5 comments

While it’s very good news, as we reported last week, that the Baker administration is finally requiring testing of staff for COVID-19 in group homes for people with intellectual and developmental disabilities, it appears the administration’s directive does not apply to staff working in day programs.

We have expressed our concern to Department of Developmental Services (DDS) Commissioner Jane Ryder 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 as a whole.

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

In July, the administration ordered day program providers to require guardians to sign a form releasing the providers from legal liability if persons with developmental disabilities contract COVID-19 in the reopened programs. In early August, Ryder implied that the state would change or eliminate the form. 

However, it is still not clear whether the form has been eliminated or changed, or whether forms that guardians have already signed remain in effect. Ryder hasn’t responded to questions we emailed to her on August 12, seeking clarification of her statements about the release form.

Day program staff not included in testing directive

As we reported last week, the Executive Office of Health and Human Services (EOHHS) issued a directive on August 14 that requires “baseline testing” and potentially biweekly retesting of all staff in the DDS residential system for COVID-19. The baseline testing must be done by September 15.

The directive was issued after months of criticism from COFAR and other advocates that the lack of mandatory staff testing was potentially putting thousands of residents of DDS group homes at risk. The directive defines staff as including all direct-care personnel and physicians, nurses, therapists, technicians, and all others who can potentially transmit the virus to residents.

The staff-testing directive, however, specifically applies to “group homes and residential treatment programs funded, operated, licensed” by DDS and other EOHHS departments. It does not refer to day programs to which thousands of group home residents are taken on a daily basis in normal times for skill-development, recreational and other social activities. At this time, we don’t actually know how many day programs are operating or how many people are attending them.

In an email sent on Friday (August 28) to Ryder, I asked whether mandatory testing of day program staff was being considered, and why day program staff were not included in the testing directive. Ryder has not yet responded to that query.

Administration recognizes a COVID risk in day programs

In the wake of data showing declining rates of COVID-19 infection in the DDS system, the administration gave the go-ahead in July to providers to reopen the day programs, which had been shut since March. At the same time, however, EOHHS 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…

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

In an 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),” and that it was “not (intended to) operate as an assumption of risk or release from liability.”

Ryder said the administration would revise “guidance on reopening the day programs” in order “to eliminate the reference to the acknowledgment of risk form.” She didn’t explain the change further. But as of today (August 31), the guidance, which is dated July 2, had not been updated.

As noted, we’re happy to see that the administration has taken a major step to address the risks of infection in group homes by issuing a directive regarding staff testing in those facilities. But in not including day programs in that directive, the administration has failed to address a major source of that infection risk.

It’s akin to locking the front door against intruders who mean to do you harm, but leaving the back door wide open.

We hope this isn’t a case of a reluctance to spend the money. But even if it is, whatever the cost of implementing a staff testing requirement in day programs might be, it would likely be far less than the cost of implementing that requirement in the residential system. More importantly, it will potentially save lives.

Baker administration finally requiring DDS providers to test all staff for COVID-19

August 27, 2020 5 comments

In the wake of months of criticism for failing to make testing of staff in group homes mandatory, the Baker administration has issued a directive that requires “baseline testing” and potentially biweekly retesting of all staff in the Department of Developmental Services (DDS) residential system for COVID-19.

The baseline testing must be done by September 15. It’s not clear whether biweekly retesting, or “surveillance testing,” of staff throughout the system will actually go into effect. Under the directive, none of the state’s five Emergency Medical Services (EMS) regions currently meets a threshold of positive cases among residents that would trigger the ongoing surveillance testing requirement.

The directive from the Executive Office of Health and Human Services (EOHHS) defines staff as including all direct-care personnel and physicians, nurses, therapists, technicians, and all others who can potentially transmit the virus to residents.

The directive is dated August 14, just a few days after COFAR reported that even the administration of Gov. Ron DeSantis in Florida had begun requiring testing of staff in group homes in that state.

Based on a FAQ document accompanying the directive, it appears the Baker administration in Massachusetts has abandoned its mobile testing program with Fallon Ambulance Service, which apparently never achieved the expected testing rate. The residential providers must now engage their own testing providers and labs and testing supplies, and will be reimbursed by the state for the costs.

As of August 11, Fallon Ambulance had tested 21,600 residents and staff in the DDS system since the company began the mobile testing effort on April 10.  But the company’s testing rate had slowed to less than 100 tests a day since mid-June, according to DDS data. Of the total individuals tested, some 2,000 staff and 1,700 residents had tested positive for the virus since early April.

Based on the DDS data, more than 800 residents and an undetermined number of staff have still not been tested for the virus.

Prior to the latest directive, DDS did not appear to have a coherent testing or retesting policy. Not only were staff not required to be tested, but there was no clear retesting policy even for residents.

Under the new guidance, testing of group home residents will actually remain voluntary on the part of guardians. However, testing will be required of all residents in a group home if there is at least one positive case in the residence.

Staff tests done on or after August 1 can count toward the baseline testing requirement, according to the directive. Staff tested prior to August 1 must be retested for the baseline requirement. There is apparently no testing requirement for staff that previously tested positive for COVID-19 unless they develop new symptoms.

Given that all EMS Regions of the state are currently well under the positive incidence threshold of 40 per 100,000 residents, the directive only appears to require surveillance testing of staff  in group homes if a positive case of COVID-19 is identified in a residence during the baseline testing or at any other time.

DDS provider seeks assistance in testing from Marlborough Hospital

In the wake of the DDS directive, at least one DDS provider sought supplies last week from Marlborough Hospital to test 75 staff and 42 residents as of the September 15 deadline, according to an email forwarded to COFAR.

In response to the provider, a Marlborough Hospital administrator stated that the hospital has “a process already set up” with the Broad Institute in Cambridge for testing supplies, analysis and results reporting. “We will make it as easy as possible for you,” the administrator wrote.

The DDS provider stated that the actual testing would be done by RN consultants who work for the provider part-time.

The Broad Institute, which is affiliated with MIT and Harvard University, states on its website that it has been working since March with the state to process COVID-19 test samples from patients across New England. The website states that tests take approximately 12 hours to complete “as teams at the testing center apply additional automation.”

The new EOHHS testing directive and policy are necessary steps

We are glad to see that the Baker administration has finally recognized both the need for mandatory testing of staff in the DDS residential system and for a clear testing and retesting policy for the system. Up to now, the lack of both of those things has put the thousands of residents and staff in the system at risk.

A coherent and workable testing policy is essential, particularly if a second wave of the virus were to hit the state before a vaccine is made available.

Why the media won’t cover issues of concern to people with developmental disabilities

August 24, 2020 25 comments

Whether it’s due to “cancel culture” or a misguided ideology that the largely privatized system of care in society is functioning perfectly for people with intellectual and other developmental disabilities, the mainstream media these days just don’t seem interested in reporting about the system.

For a while now, we’ve been debating why it is so difficult to get media coverage in Massachusetts, in particular, of issues of concern to this group of people and their families and guardians.

A letter sent to the New York Times may provide one answer. In the August 20 letter, 75 organizations and leaders in the disability community critique that newspaper’s apparent lack of interest in covering “serious issues facing those with significant intellectual and developmental disabilities.”

The Times has apparently not yet published the letter, which is sponsored by the nonprofit National Council on Severe Autism (NCSA).

The letter points out that the Times, while recently honoring the 30th anniversary of the signing of the Americans with Disabilities Act (ADA), failed to include virtually any mention of persons with intellectual or other developmental disabilities. Yet the paper published over two dozen articles over the past few weeks about people with a wide range of other, non-cognitive disabilities.

As the NCSA’s letter to the Times notes, “the full story” in honoring the ADA would include those people with profound intellectual and developmental disabilities. But in doing so, the Times would have to acknowledge that this group of people do not have “the autonomous decision-making, independent living, and competitive, minimum-wage employment that are the cornerstones of the Disability Rights movement.”

The letter ties the Times’ disregard of the developmentally disabled to “cancel culture.” The letter states:

It is ironic that the Times has excluded the most disabled from its ADA coverage exactly as a debate about “cancel culture” has embroiled this newspaper and others. Severe intellectual and developmental disability should be a bipartisan issue — we, the undersigned, represent the broad range of the political spectrum. But because our stories don’t fit the progressive left’s disability narrative, they have been effectively cancelled — exactly by those who claim to care most about this vulnerable population.

We think the disregard of the developmentally disabled is evident in the mainstream media as a whole. The media buy into an ideology promoted by much of the disability advocacy community that no one, no matter how low their measured cognitive functioning may be, has limits on what they can achieve in the community system.

The problem is that this is an absurd position, and it leads to basic contradictions between the ideology and reality. People with intellectual disabilities do have limits on their ability to function in society. Rather than confront that contradiction, the media appear to have chosen to ignore people with cognitive disabilities altogether.

When we raise issues about the need for institutional care or sheltered workshops for those with intellectual disabilities, the media in Massachusetts don’t want to hear about it. It doesn’t fit the narrative that there is no one who is incapable of functioning perfectly in the community and working in mainstream jobs.

We recently reported that the Baker administration discussed reducing public reporting of data on testing of individuals and staff in DDS-funded group homes for COVID-19. Although we tried to bring our concerns over that issue to the attention of the mainstream media in Massachusetts, no media outlet has run any articles about it.

With only the occasional exception, the mainstream media in Massachusetts do no more than scattershot reporting even on the tragic and ongoing problem of abuse and neglect in the DDS system.

Community-first ideology pushed by successive administrations and corporate providers

Perhaps not coincidentally, the ideological position that the community system of care is working perfectly for everyone fits with a decades-long push by successive administrations in Massachusetts and corporate providers for more privatization of the DDS system. According to the ideology, clients in privatized, community-based residences are completely integrated with their communities and can reach their full potential there, unlimited by institutional constraints.

But while the community-based system has meant more state-funded contracts for providers and skyrocketing pay for its corporate executives, the system has largely failed to integrate its clients, and is beset by a bottom-line mentality that provides low pay, training, and supervision of direct-care staff.

Systematic reporting on inadequacies in care in the privatized system, or on a lack of adequate testing in that system for COVID-19, is not desired by corporate, state-funded providers.

Absurd position that autism is “perfect”

The letter to the Times pointedly criticizes an essay that the newspaper published in July that illustrates the ideology driving media coverage today. The essay by writer Madeleine Ryan, the mother of an autistic child, is titled “Dear Parents: Your Child with Autism is Perfect.”

In it, Ryan stated, “Your child might be verbal, nonverbal, aggressive, passive, introverted or extroverted. It doesn’t matter.” She added, “Your child is perfect. Be skeptical of what doctors, teachers, family members or friends say to the contrary.”

The letter to the Times includes a response to Ryan’s piece by Amy Lutz, founding board member of the NCSA and parent of a severely autistic son:

[Jonah] will never go to college, hold a job, see the world, or have a romantic relationship. He will always require round-the-clock supervision, because he has no safety awareness: he doesn’t look before crossing the street, despite years of instruction; and in one terrifying moment, he tried to jump off a cruise ship because he wanted to swim in the ocean… Jonah’s experience is just as important…and must not be elided from the narrative in favor of some kind of fantasy autism nirvana.

The letter further quotes Lee Elizabeth Wachtel, Medical Director of the Neurobehavioral Unit at the Kennedy Krieger Institute and an Associate Professor of Psychiatry at the Johns Hopkins School of Medicine:

When an autistic child has permanently blinded himself from self-injury, broken his teacher’s arm, or swallowed multiple toothbrushes and required emergency surgery, there is nothing perfect or magnificent about it, and it must be remedied.

Warning in the Olmstead decision

The letter to the Times notes a warning by Justice Anthony Kennedy in the Olmstead v. L.C. U.S. Supreme Court decision, which cleared the way for expanded privatization of care of the developmentally disabled. In a concurring opinion to the Olmstead decision, Kennedy wrote that:

It would be unreasonable, it would be a tragic event, then, were the (ADA) to be interpreted so that States had some incentive…to drive those in need of medical care and treatment out of appropriate (institutional) care and into settings with too little assistance and supervision.

Unfortunately, that is exactly what the ADA and the Olmstead decision itself have been interpreted by the media and many advocates as allowing.

Both the ADA and Olmstead are being used as covers for the real attitude toward the developmentally disabled on the part of the media and so many others in positions of power — they just don’t care.

After long fight by advocates for Nicky’s Law, key state lawmakers seek postponement of its effective date

August 21, 2020 2 comments

The chairs of a key state legislative committee are seeking a nearly year-long delay in establishing a long-sought registry of staff found to have abused persons with developmental disabilities in Massachusetts.

The delay would postpone the effective date of Nicky’s Law from January to November of next year, leading to objections from COFAR and other advocacy organizations that have fought for implementation of the legislation.

State Representative Kay Khan and Senator Sonia Chang-Diaz, the House and Senate chairs of the Children, Families, and Persons with Disabilities Committee, are both reportedly seeking the delay in implementation of the law at the request of the Disabled Persons Protection Commission (DPPC).

The DPPC, the state agency charged with investigating abuse and neglect of disabled adults, was put in charge of developing the registry under the new law.

A staff member for Khan declined yesterday to say why the DPPC, along with Khan and Chang-Diaz, are seeking the delay. “We appreciate your concern and are having further conversations,” the staff member wrote in an email in response to COFAR’s query.

On February 13, 2020, Governor Baker signed the bill into law. The legislation establishes a registry of names of employees of the Department of Developmental Services (DDS) and its providers who have been found by the DPPC to have committed acts of substantiated abuse resulting in serious physical or emotional injury.

Currently, persons applying for caregiver positions in the DDS system must undergo criminal background checks, which disclose previous convictions for abuse and other crimes in Massachusetts and other states. However, even when abuse against persons with developmental disabilities is substantiated by agencies such as the DPPC), it does not usually result in criminal charges. As a result, those findings of substantiated abuse are often not made known to providers or other agencies seeking to hire caregivers.

We have long maintained that these problems have gotten steadily worse as functions and services for the developmentally disabled have been steadily privatized over the years without sufficient oversight of the corporate provider-based system.

Last year, we analyzed DPPC data on a per-client basis of more than 14,000 abuse complaints in the Fiscal 2010-2019 period. That analysis underscored the relative dangers of privately provided, but publicly funded care. We have reported over the years on abuse and poor care are problems that involve providers throughout the system.  

An abuse registry is needed as soon as possible in Massachusetts. At the same time, we think this registry is only a start. Ultimately, the executives of the provider agencies need to be held accountable for the bottom-line mentality in many of their organizations that fails to provide resources for training and supervision of direct caregivers.

We are asking people to call the offices of the Senate and House chairs Children and Families Committee at (617) 722-1673 and (617) 722-2011 respectively, or email Senator Change-Diaz at Sonia.Chang-Diaz@masenate.gov or Rep. Khan at Kay.Khan@mahouse.gov.  Please ask them for a justification of their plan to delay the implementation of Nicky’s Law.

Baker administration backtracking on COVID liability release forms for DDS-funded day programs

August 18, 2020 8 comments

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.

Florida moves ahead of Massachusetts in testing group home staff for COVID-19

August 11, 2020 4 comments

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.

EOHHS emails show apparent consensus on reducing public reporting of COVID-19 data in congregate care facilities

August 5, 2020 7 comments

Internal emails in June among the Baker administration’s top human services administrators reveal an apparent consensus to reduce public reporting of COVID-19 test results in congregate care facilities.

That consensus appears to have led to decisions to stop publicly reporting cumulative COVID testing data and not to report test data on provider staff working in group homes for persons with intellectual and developmental disabilities. For reasons that are unclear to us, the administration publicly reports only the number of staff testing positive in state-run group homes.

In one email, a senior manager at MassHealth appears to have wanted to “sunset” congregate care reporting in general. That was apparently just as Governor Baker was signing legislation into law that would increase reporting requirements about COVID-19 infection rates in congregate care facilities.

COFAR received a total of eight emails last week in response to a Public Records Request filed with the Executive Office of Health and Human Services (EOHHS) on June 25. Our request was for records bearing on an apparent decision to change the reporting in EOHHS’s online Weekly State Facility Reports from cumulative or historic COVID data to “current cases.”

As a result of that change, only a handful of DDS clients are now reported as being COVID-19 “positive” in each EOHHS weekly report, and the number of deaths is only listed for patients who died in the previous seven days. This version of the EOHHS weekly report from May listed cumulative testing data and a cumulative total of deaths.

The current EOHHS weekly reports do list numbers of clients who have “recovered” from COVID-19, but the notes to the reports indicate that this is not cumulative data. As noted below, it does not appear to be possible to compare the public EOHHS data with data provided to us directly by the Department of Developmental Services (DDS) in response to email queries.

The June EOHHS email discussion is concerning to us because it appears indicative of an overall lack of transparency by the administration in its response to the pandemic, particularly with respect to DDS clients.

On August 3, I emailed Health and Human Services Secretary Marylou Sudders, inviting her to respond to a series of questions we have about the emails.  Among our questions is why, in the midst of a pandemic, would administrators at EOHHS be discussing and agreeing on ways to reduce reporting about the pandemic to the public?

Sudders has not responded to my email.

The eight emails we received covered four-day period from June 10 through 13. Sudders herself was not included in the email thread, which included close to a dozen officials in some cases.

The people on the thread include Monica Sawhney, who is MassHealth chief of staff, and Daniel Tsai, who is assistant secretary for MassHealth. Others include Catherine Mick, EOHHS undersecretary for human services, Lauren Peters, undersecretary for health policy, and Alda Rego, assistant secretary for administration and finance.

All of the EOHHS emails concern what Sawhney described as a “proposal for our public data reporting going forward.” She didn’t specify on the thread that the data reporting specifically referred to COVID information. However, we are assuming that’s what this was all about because the emails were provided to us in response to our request for internal documents concerning COVID reporting.

The emails include the following:

  • A June 11 email in which Sawhney wrote the following to nearly a dozen EOHHS officials:

Thanks all for the feedback. Below is an updated list with a couple of open questions. I’m also attaching here a proposal for the dashboards starting next week. You’ll see we are moving away from cumulative data and toward snapshot/weekly. This is how we are already reporting the inpatient psych data. Please review and provide any feedback by tomorrow. We can also discuss on our call tonight. Thanks! (my emphasis)

The dashboard proposal was not included in the documents provided to us by EOHHS. There is no explanation given in the above email or any of the other emails as to why EOHHS was moving away from cumulative data.

  • An email dated June 13 in which Sawhney stated that all EOHHS agencies “should continue to collect vendor staff and client-level data (outside of facilities/congregate care) internally, but do not need to report it to EOHHS” (emphasis in the original)

Both the recommendation to stop reporting cumulative data and to exempt test results of vendor staff from public disclosure appear to have been adopted.

That changeover in reporting apparently occurred sometime in late June, apparently just about the time the emails referred to above were being sent.

  • An email, dated June 10, in which Sawhney stated:

I would like to clear up for each agency what data we want them to continue to report to us, what they should be collecting internally but do not need to report up, and which reports they can stop completing altogether. (my emphasis)

  • A June 10 email in response to Sawhney in which Martha Farlow, ACO Policy and Contracts senior manager at MassHealth, wrote:

I have also gotten questions about whether agencies need to continue the “congregate care” report (I believe the one Joan Clowes was compiling). I think that could be sunsetted.

As noted, Governor Baker signed legislation into law on June 8 that would add requirements for reporting COVID data in congregate care facilities, although DDS group homes are not included in those requirements.

  • A June 11 email In response to Farlow’s email, in which Catherine Mick, EOHHS undersecretary for human services, wrote:

In lieu of the congregate care reporting, could we ask each agency to just submit agenda topics for cross discussion?

  • A June 11 email, in response to Mick, in which Sawhney stated:

I think as long as they’re still reporting the qualitative information, they don’t need to report the congregate care quantitative information through this report any more.

  • The same June 13 email in which Sawhney stated that, “Agencies do not submit daily tracker to EOHHS going forward.” (emphasis in the original).

In my query on August 3 to Sudders, I also asked what the purpose is of moving away from reporting cumulative data and why the administration would not continue to present cumulative data in addition to current data.

How, I also asked, can epidemiologists draw conclusions about the progress of the state’s response to the pandemic without cumulative data?

Also, why would reporting on congregate care data need to be eliminated or sunsetted? And why is data on staff working in corporate provider or vendor-run group homes not reported?

DDS data is different from EOHHS State Facility Weekly Reports

As a result of reporting changes made and differing reporting policies within the administration, the data we have gotten as a result of direct requests to DDS is different and, in many cases, not comparable to the data provided in the EOHHS Weekly State Facility Reports.

For instance, the latest EOHHS Weekly State Facility Report, as of July 28, lists a total of 10 “current (COVID-19) positive client cases” in all DDS-funded group homes, and a total of 1,355 “current clients recovered.” It also lists zero deaths in the past seven days.

However, data provided by DDS as of the same date, July 28, lists a cumulative total of 1,606 group home residents as having tested positive for COVID-19. There is no clear way to compare the cumulative total of the 1,606 positive-testing clients in the DDS data with the 1,355 “recovered” and 10 currently positive clients in the EOHHS data.

Also, the DDS data notes that a cumulative total of 1,864 state and provider staff have tested positive in DDS-funded group homes as of July 28, and that there have been a total of 104 COVID-related deaths in the DDS system.

The EOHHS data, as noted, does not report the cumulative total of deaths or the number of positive-testing staff in provider-run DDS group homes. The July 28 EOHHS Weekly State Facility Report states only that less than five staff are currently positive in state-run group homes.

We suggest that people to call their legislators and urge them to push for better public reporting of COVID-related data in the DDS system. You can refer to our blog post here at cofarblog.com. You can find your local legislators at this site.

For too long, DDS clients have been treated as an afterthought in the administration’s response to the COVID pandemic.

 

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