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 26 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 or Rep. Khan at  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 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.


Guardians and two group-home providers say no to day program re-openings due to COVID-19 risk

July 29, 2020 6 comments

While Governor Baker has given the go-ahead to the reopening of day programs for persons with intellectual and developmental disabilities in Massachusetts, at least two group home providers are either declining to send residents to the programs or recommending that they not go until a COVID-19 vaccine is found.

Two guardians also told us they won’t sign a form that day programs have been issuing at the administration’s direction that would absolve the providers of liability should any of the clients become infected.

The release form has been issued by the Executive Office of Health and Human Services (EOHHS), according to a residential and day program provider to the Department of Developmental Services (DDS).

Neither DDS Commissioner Jane Ryder nor DDS Ombudsman Chris Klaskin responded to a query from COFAR last week about both the release form and the safety of reopening the day programs.

Thrive and NRS both recommending not to send residents to reopened day programs

In a July 23 email to guardians and family members, an executive officer with Thrive Support & Advocacy, a DDS residential provider, stated that they had concluded that “the day program environment poses too much of a health risk to our Thrivers and staff at this time.”

The email from Denise Vojackova-Karami, vice president of developmental services, added that the planned August 3 day program re-openings would “negate the precautions we have taken thus far. This decision was not made lightly, and we will revisit it if Massachusetts virus numbers continue to decline.”

Meanwhile, Scott Kluge, director of Northeast Residential Services (NRS), a regional DDS manager of state-run group homes, stated in a July 20 message to guardians that “it is our preference that our residents do not immediately rush back to their day programs.” Kluge said NRS “would feel more comfortable …if there is a universally accepted vaccine in place” first.

Kluge maintained that NRS has an additional concern about safely transporting residents to their day programs “as there is really no way to maintain social distance while in a van.” He added that “several families have already reached out to us expressing the same concerns.”

The release form, which was reportedly drafted by a provider trade association at the direction of EOHHS, asks that 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, and that such exposure or infection may result in personal injury, illness, permanent disability, and possibly even death. You understand that this risk may result from the actions, omissions or negligence by you or your loved one, any employee, and/or other clients at the program.

Ryder has not commented

In a July 23 email to DDS Commissioner Ryder and Ombudsman Klaskin, COFAR posed a series of questions about the safety of the day programs and the need for the release form. Among our questions were the following:

  • Do you agree that in attending day programs, DDS clients face an increased risk of contracting COVID-19?
  • What is your understanding of the meaning of “voluntarily assuming the risk” of being exposed to or contracting the virus?
  • Is this agreement intended to hold day program providers harmless from lawsuits and to shift responsibility to a third party?
  • What happens if a guardian or family member declines to sign the agreement?
  • Is the agreement a de facto admission that day programs are unsafe right now?
  • Will all day provider staff be tested weekly?
  • What specific transportation plans will be implemented to protect the clients?
  • Will masks be mandatory in day programs? The agreement states only that masks are recommended.
  • How will clients without guardianship or representatives be responsible for signing a legal document?
  • Why is there an apparent rush to open day programs when clients are still largely being quarantined in their group homes?

As noted, neither Ryder nor Klaskin have responded to the July 23 query. Ryder and Klaskin have also not responded to previous questions from us about the scope of the DDS COVID-19 testing program in the DDS system.

Guardian says release form presents a false and dangerous choice

Neil Ferris, whose brother Eugene is a resident of a Thrive group home, said his brother had been attending a day program in Northborough operated by the Justice Resource Institute (JRI) for more than seven years.  Ferris termed it a “well run program with good staff and a full-time nurse.”

He added that the day program provided “a very important outing each day for socializing, having relationship with others and enjoying some fun activities..” But he is concerned that the program opens up interactions with clients from many other Metro West locations, and “raises the concern of virus transmittal.”

Without a mask requirement, Ferris maintained, the day program arrangement “places all at risk. If a client cannot wear a mask for a number of reasons, that client should not attend the program.”

Ferris said that while his 66-year-old brother needs the day program to stay active mentally and enjoy a life outside of his room at his house, “JRI places us in a terrible position. If I don’t sign (the release form), I deprive my brother of a good life. If I do sign it, I place my brother at serious risk with his many underlying health issues as almost all other clients have.”

While Andy Pond, JRI’s pesident and CEO, told COFAR that JRI would provide remote activities for clients if guardians declined to sign the release form, Ferris doesn’t believe that will be the case. “JRI cannot and will not provide any ‘at-home’ resources for those who do not sign,” he wrote in an email to us.

Ferris said he believes that JRI and other day program providers are placing their financial concerns ahead of their clients’ safety.  “They should not open day programs until such time as they can safely protect their clients, and they should eliminate the legal release absolving them of any responsibility.”

Ferris said he believes Thrive has determined that their clients should not attend day programs “because it is way to soon, safety protocols at JRI are insufficient, and some clients lack the capability to follow safety guidelines.”

Pond maintained that “our (day program reopening) process has been careful and deliberative, and we have proceeded according to the best information we have access to.”

Mother says daughter would be at risk 

The mother of an NRS group home resident said she agrees with NRS  that it will only be safe for her daughter to go back to her day program after a vaccine is developed. She said she is not only concerned about safe distancing at the day program and on the transportation van, but her daughter could not tolerate a mask for that amount of  time.

“I think asking parents and guardians to sign a waiver is ridiculous,” the client’s mother said. “That waiver would absolve them of any responsibility.”

We fully support the positions of those residential providers and guardians who think it would be best to wait for the development of a vaccine before opening day programs for DDS clients. And we support those guardians who are refusing to sign a form absolving the day program providers of liability.

What does DDS think about all of this? We don’t know. As far as we can tell, Commissioner Ryder has not even put any information for guardians and family members about the day program situation on the Department’s website.

What families and guardians need right now is information and leadership from DDS and the administration in general, and it doesn’t appear they’re getting it.

Release form sent to guardians to protect DDS day program providers from COVID-19 liability

July 24, 2020 9 comments

As day programs for persons with intellectual and developmental disabilities open as scheduled in coming weeks, guardians are being asked to sign a release form that would absolve day program providers of legal liability if a client contracts COVID-19.

The release form has been issued by the Executive Office of Health and Human Services (EOHHS), according to the Justice Resource Institute (JRI), a provider contacted by COFAR.

COFAR reviewed the form, which was provided by a guardian of a JRI client, and contacted Department of Developmental Services Commissioner Jane Ryder with questions about the form on Thursday. Ryder has not responded to our query.

According to Andy Pond, JRI president and CEO, guardians can opt not to sign the form. In that case, day program services will be provided remotely, Pond said. He said that while the form was issued by EOHHS, it was actually drafted by a provider trade association.

COFAR President Thomas J. Frain, an attorney, said he would advise guardians not to sign the form. He also maintained that he does not believe on-site day program services can be denied even if a guardian declines to sign the form.

The release form appears to be part of a trend among government agencies and  providers of all types to gain immunity from lawsuits stemming from the pandemic.

But as one advocate put it, “How can we give all providers an incentive to oversee staff and provide adequate staffing when there is no potential liability for simple negligence or even gross negligence? Some will do the right thing regardless, and some may not.”

And as one guardian stated, the form is “a legal protection document for the providers, not the clients. It forces clients and families to take unneeded risks for services.” The guardian added that he knows of no services “that can be performed remotely, as they are all group centered.”

Among other things, the release form states that:

(The day program provider) cannot guarantee that an Individual will not be exposed to, contract, or spread COVID-19. Further, attending a Program for in-person services increases an Individual’s risk of contracting COVID-19.

In addition, guardians or clients are asked to sign the form and to assert that they:

 …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, and that such exposure or infection may result in personal injury, illness, permanent disability, and possibly even death. You understand that this risk may result from the actions, omissions or negligence by you or your loved one, any employee, and/or other clients at the program.

Finally, in signing the form, the guardian or client states that they “…freely and knowingly assume the risk as described above.”

The following are some of the answers to COFAR’s questions that were provided by Pond, the CEO of JRI.  We asked these same questions of DDS Commissioner Ryder, who, as noted, hasn’t responded:

Is the release form a de facto admission that day programs are unsafe right now?

JRI is following all requirements to minimize the risk of COVID transmission at the program, although it is of course true that until there is widespread access to a vaccine, no  environment (other than isolation) is 100% “safe.”

Will all provider staff be tested weekly?

Staff will receive temperature and symptom checks prior to the start of each shift. Staff will be tested if they have symptoms or if they have reason to believe that they may have been exposed. As an agency, we recently hired a full time “covid nurse” who helps coordinate testing and consults on contact tracing, etc.

We understand that EOHHS is currently considering policies which may require periodic (sometimes called “survelliance”) testing of staff.

Will JRI report all infections to clients and representatives?


What specific transportation plans will be implemented to protect the clients?

Transportation to and from dayhab services is not provided by JRI.  We understand that transportation vendors will be following EOHHS Guidance when they resume services, including: screening  and hand-washing for drivers and passengers before and after each trip ; distancing rules on vehicles; use of masks by drivers and preferably also by riders; and cleaning and sanitizing procedures.

We expect JRI to offer very limited transportation as part of dayhab services, such as community outings, but will be following that same Guidance.   We have procedures to screen drivers and riders, for hand-washing, for mask wearing, and for enhanced cleaning and sanitizing.

The capacity of each van is limited, with a protective barrier in place between the driver and passengers, and passenger seats limited to one person in every other row.

Will masks be mandatory in day programs? The agreement states only that masks are recommended.

Masks will be mandatory for staff and recommended for clients.  Some clients are not able to wear masks because of health conditions not related to COVID.

How will clients without guardianship or representatives be responsible for signing a legal document?

Under the EOHHS Guidance, they are required to sign or verbally acknowledge their acceptance.

Why is there an apparent rush to open day programs when clients are still largely being quarantined in their group homes?

Our process has been careful and deliberative, and we have proceeded according to the best information we have access to. EOHHS permitted opening sites in early July. We will be reopening in August at reduced capacity and all clients have the option to continue to receive services remotely.

Pond added that he wanted family members with questions to “reach out to the program directly.”

The fact that the Baker administration is issuing this form to guardians says some good and bad things about the administration’s continuing response to the pandemic. It’s a good thing that the administration recognizes the continuing threat that the virus poses in the DDS system even as they assert that infection levels are falling.

It continues to be troubling, however, that the administration is not taking basic precautions such as requiring mandatory testing of staff in day programs and group homes. Instead, the strategy appears to be to protect providers from liability even if infected staff are negligently admitted into DDS facilities where they then infect clients.

As usual, the process lacks accountability and transparency. The administration wants to protect itself and its providers from responsibility if clients get sick, and the administration continues to ignore basic questions from advocates and families about their policies.



Administration keeping records hidden and declining comment on COVID-19 in DDS system

July 21, 2020 9 comments

The Baker administration seems to be going out of its way to avoid providing information to us regarding the impact COVID-19 has had on persons with intellectual and developmental disabilities in Massachusetts.

We have four outstanding Public Records Requests with three state agencies – the Executive Office of Health and Human Services (EOHHS), the Department of Developmental Services (DDS), and the Department of Public Health (DPH). In none of the cases have we received responsive documents.

Administration officials also don’t appear even to want to talk about their response to the pandemic. Neither HHS Secretary Marylou Sudders nor DDS Commissioner Jane Ryder have responded to our repeated questions over the past several months about the lack of mandatory testing of staff in the DDS system for COVID-19.

A key state lawmaker also declined to clarify her apparently erroneous remarks recently made to a COFAR member about why mandatory testing of staff isn’t being done. (More about that below.)

Ryder also has refused to respond to our questions about the administration’s apparently haphazard policy on retesting of persons in the system or the slow pace of testing of both residents and staff.

For instance, one parent of a resident in a state-operated group home said his daughter has been tested four times in her group home since April, and has been negative each time. Meanwhile, approximately 1,400 residents in the DDS system haven’t even been tested once.

We are concerned that if a second wave of the virus hits Massachusetts, DDS’s lack of a coherent policy on retesting could be tragic.

No mandatory testing records provided 

Our longest-running Public Records request to the administration is for internal emails and other documents relating to the topic of mandatory testing of staff in the DDS system. As we have reported, DDS does not require staff to be tested even though it is likely that much of the spread of the virus in group homes has been caused by asymptomatic staff.

I first asked EOHHS, DDS, and DPH on May 26, more than a month and a half ago, for emails and other records regarding mandatory testing, and so far none have been provided. The stories keep changing from EOHHS as to whether they have any such records.

First, EOHHS said in early June that they had so many records that the cost could potentially be prohibitive to provide them to us. But after I narrowed down my request at their suggestion, they said earlier this month that they have no responsive records. I filed an appeal with the state Public Records Division on July 14.

EOHHS has also failed to provide us records I requested on June 16 relating to a contract with Fallon Ambulance Service, which is carrying out the testing in the DDS system.

Among the records I asked for were records showing how much Fallon had been paid since they started the testing work on April 10, and copies of daily reports, which the contract requires Fallon to submit to EOHHS.

We have also have not yet received any records, which I asked for on June 25, concerning the online reporting system used by DPH regarding COVID test results in the DDS system. We want to know why the reporting system has been changed from cumulative data to current data, and why the site shows only currently positive cases.

DDS itself has provided cumulative COVID testing data to us, but the Department refuses to display the data on its website where the public could access it on a daily basis.

No indication whether administration has discussed mandatory testing

To date, no one in the administration has given us a reason for the decision not to make testing of staff mandatory in the DDS system.

On May 26, I asked EOHHS, DDS, and DPH for internal emails, memos and other records relating to internal discussions of the topic.

To date, I have received zero documents in response to my request. As a result, on July 14, I filed an appeal with the state’s Public Records Supervisor.

It’s hard to believe  that there have been no such internal discussions at the highest levels in EOHHS.

EOHHS story keeps changing on the records it has

On June 9, when a response was legally due under the Public Records Law to my May 26 request for documents, an EOHHS records officer told me initial searches of emails of all EOHHS personnel using the term “mandatory testing” resulted in such a voluminous number of documents that the cost of reviewing and reproducing them would be potentially prohibitive.

As a result, I agreed to the records officer’s suggestion that I narrow the requested communications to Secretary Sudders and her executive team, and narrow the time frame to a period between April 1 and June 1, 2020.

About a month went by, and I received no further word or documents from EOHHS or from DDS or DPH. On July 9, after I queried EOHHS, the records officer said he had a “responsive record” and would provide it by July 13. When no response was forthcoming by July 14, I appealed to the Public Records Division.

The next day, the EOHHS records official emailed me to say that he had been mistaken about the responsive record, and that EOHHS actually had no records that were responsive to my narrowed request.

So, in the month and a half since my original Public Records Request, EOHHS had gone from having a voluminous number of records in response to it, to having zero records after I narrowed the request according to their suggestions.

So, I asked on July 15 if EOHHS could redirect their search to the highest-level personnel in the agency whose emails did include references to mandatory testing in the agreed-upon time frame.

Secondly, I asked for an explanation as to why it had taken more than a month since our June 9 agreement on narrowing my records request to do a search of the emails of the secretary and her team, which then came up empty. To date, I have received no response to those follow-up questions. 

DPH wanted to charge us for records … then did not respond to us

On June 17, DPH responded to my May 26 Public Records request regarding mandatory testing records with a letter stating that that agency had identified more than 2,700 emails that might be responsive to my request, and that providing all of them would cost us more than $1,600.

In a June 18 email to the DPH records officer, I offered to similarly narrow my request to communications involving DPH Commissioner Monica Bharel and her executive team and to a time period from April 1 through June 1.  To date, I have not received a response from DPH to my offer, nor have I received any records.

State lawmaker declines to support claim that mandatory COVID testing is prohibited by statute

In a July 7 email to a COFAR member in response to a question about mandatory testing of staff, state Representative Kay Khan stated that she has been advocating for increased testing in the DDS system.

Khan, who is House chair of the Children, Families, and Persons with Disabilities Committee, said it was her understanding, however, that requiring mandatory testing of staff is not allowed by statute and that the Massachusetts General Laws would need to be changed through legislation for this to become policy.

We at COFAR are not aware of any such statute that would prevent mandatory testing. In an email to Khan on July 8, I asked if she could provide a citation of the statute she was referring to. Khan has not responded to my query. 

No new records provided regarding Fallon COVID testing contract

On June 16, I asked EOHHS for documents relating to a contract with Fallon Ambulance Service to test residents and staff in the DDS system. We had previously received the contract itself from EOHHS.

Among the documents I asked for on June 16 were records showing how much Fallon had been paid since they started the testing work on April 10, and copies of daily reports, which the contract specifically required Fallon to submit to EOHHS.

In its response on July 16, a month later, EOHHS provided only the same contract it had provided earlier.  The EOHHS response stated that the agency had no daily reports from Fallon, but that we should ask DPH for those.

As far as payment to Fallon, the EOHHS response stated that I should go to the Comptroller’s online database at This database, however, does not make it clear how to determine payments made to contractors.

For instance, when I did a search for Fallon Ambulance, the Comptroller’s site appeared to indicate that the last time Fallon Ambulance was paid was in Fiscal Year 2018. When I checked it, the site listed $0 paid to the company in the previous and current fiscal years.

I emailed the EOHHS records officer about the problem with his agency’s response to my Public Records request yesterday (July 20.) I have not received a reply.

DPH ignores Public Records Request regarding its reporting system

On June 25, I asked EOHHS, DDS, and DPH for documents concerning the weekly online data reporting system used by DPH for testing results in the DDS system. We wanted to know why the reporting system had been changed from cumulative data to current data, which shows only currently positive cases.

Both DDS and EOHHS stated they would provide a response by July 17. To date, however, I haven’t received that response from either agency.  I have received no communication from DPH since filing my June 25 Public Records request.

As a result, I appealed to the state Public Records Supervisor on July 16, specifically regarding the lack of response from DPH.

It’s not clear to me what, if anything, the Public Records supervisor is going to do about any of these matters.

In any event, maybe it’s just us, but is anyone else sensing a pattern here? After initially seeming responsive to our information and records requests when the viral pandemic first appeared in March, the administration has become increasingly secretive.

We are at a loss to explain this apparent lack of transparency. Overall, the administration has been getting high marks for its response to the pandemic. Massachusetts is one of the few states in the nation in which the rates of infection have been declining.

But when it comes to the DDS system, the administration just doesn’t want to answer any questions.

ACLU and SEIU surprisingly and confusingly gang up on congregate care for the developmentally disabled during COVID crisis

July 13, 2020 3 comments

The American Civil Liberties Union (ACLU) and the Service Employees International Union (SEIU) are usually strong advocates of accountability and transparency in government.

That’s why it is surprising that both of those organizations appear to be using the coronavirus pandemic to further a longstanding agenda, which we never knew they shared, to privatize services to people with intellectual and developmental disabilities.

It’s particularly surprising that the SEIU, a human services employee union that represents caregivers in the state’s two remaining developmental centers, would be on board with closing down state-run care facilities.

In a petition filed June 23 with the U.S. Department of Health and Human Services (HHS), the ACLU, SEIU, and a number of other advocacy organizations appear to start off on the right track in criticizing the federal government for its mismanaged response to the pandemic.

The petition identifies nursing homes, Intermediate Care Facilities for the developmentally disabled (ICFs), and group homes as sites of large numbers of COVID-19 infections and deaths that could have been prevented with better guidance for infection control, more testing, and better patient and worker protections.

But the petition then goes on to make a number of, at times, poorly conceived and even confusing claims and recommendations that ultimately appear intended to support a privatized care agenda.

At least some of the confusion centers around group homes, which the petition lumps together with ICFs as sources of “congregate care.”

The petition suggests that among the causes of the infections and deaths is the federal government’s failure “to divert people from entering nursing homes or other congregate settings” or to increase discharges from those settings “to the community.”

The argument the petition makes is that reducing the population in all of those facilities would “make social distancing possible.”

The petition defines congregate settings as including ICFs, psychiatric facilities, and group homes. Yet, group homes are considered part of the community-based system of care in Massachusetts and other states.  As a result, it isn’t clear what the ACLU and SEIU mean in stating that people living in group homes would be among those in congregate settings who should move “to the community.”

The petition, moreover, calls for reducing the population of nursing homes and congregate settings by 50 percent. Should HHS neglect to act within three weeks to enact that and other suggested measures, the groups will sue, the petition states.

It is unclear whether the ACLU and SEIU mean that nursing homes, ICFs, and group homes should all be emptied of 50 percent of their residents, or where those residents would then go.

VOR, COFAR’s national affiliate, issued a statement sharply critical of the petition, maintaining that:

…the ACLU has cast its net too wide, and falsely claimed to represent the interests of everyone receiving federally funded services who is classified as elderly or who has intellectual and developmental disabilities. In doing so, it apparently assumes that all such persons look and feel alike and need the same supports and level of care.

Further confusion over the HCBS waiver

Adding to the confusion over group homes is language in the ACLU/SEIU petition calling on HHS to “provide incentives to states to redesign their Medicaid programs to expand Home and Community Based Services (HCBS) and other community-based services and supports” with the goal of the 50 percent reduction in the population in congregate settings.

Once again, that language is confusing in that group homes in Massachusetts and other states have long been recipients of federal funding under an HCBS waiver of Medicaid regulations governing ICFs. In asking for an expansion of Medicaid funding under the HCBS waiver, is the petition suggesting that the money go toward care in a setting other than group homes?

ACLU/SEIU petition misreads the Olmstead Supreme Court decision

The ACLU/SEIU petition further misreads the landmark Olmstead v. L.C. U.S. Supreme Court decision, which paved the way for expansion of privatized care. Although the 1999 decision held that community-based care should be made available for those who desire it, it nevertheless recognized the role played by institutional care for those who can’t function under community-based care.

The Olmstead ruling stated that the Americans with Disabilities Act (ADA) “does not condone or require removing individuals from institutional settings when they are unable to benefit from, or do not desire, a community-based setting.”

We have asked the SEIU’s Massachusetts affiliate, Local 509, whether it is in support of the ACLU/SEIU petition. We have not heard back yet, but we hope they are in a position to disavow it.

There is a lot to be concerned about regarding the efforts of both the federal government and the state government here in Massachusetts to protect persons with intellectual and developmental disabilities from the virus. We’ve raised a lot of those concerns over the past few months.

At the same time, and for that reason, we don’t think it is appropriate for any organization to use the pandemic to support an anti-institutional agenda.

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