COFAR blog

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

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

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

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

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

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

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

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

Family members and guardians cite arbitrary restrictions

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

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

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

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

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

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

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

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

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

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

COVID infection rates not correlated with restrictions on family visits 

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

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

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

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

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

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

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

Resistance among group home staff in the Department of Developmental Services (DDS) system to getting vaccinated against COVID-19 seems to be an ongoing problem, and we’re concerned that it may be linked to the continuing presence of COVID in the system.

The latest online weekly COVID testing data for the DDS system show that while the number of infected staff and residents in the system has declined from historic highs in December and January, the rate of that decline may have stalled in the past several weeks. 

The vaccination effort in the DDS system started in December.

It is concerning that as of April 9 — some four months after the vaccination program began — less than 50% of staff in state-operated group homes were fully vaccinated, according to data provided last week by the Executive Office of Health and Human Services (EOHHS).  In provider-run group homes, only 51% of staff were fully vaccinated as of April 12. 

The data are as of April 12 for provider-operated group homes, and as of April 9 for state-operated group homes and the state’s two developmental centers or Intermediate Care Facilities (ICFs). The data were provided to COFAR in response to a Public Records Request. EOHHS and DDS provided data for February and March in response to a previous records request.

In the ICFs, the current level of staff vaccinations appears to be higher than in the group homes, but the numbers are still somewhat concerning. Some 68% of the staff at the Wrentham Developmental Center (WDC) and 66% at the Hogan Regional Center in Danvers were fully vaccinated as of April 9.

That this apparently low level of staff vaccinations is not simply due to a slow vaccination process appears to be borne out from the data. First of all, among residents of both state and provider-run facilities, the vaccination picture looks much brighter.

Among residents in state-run group homes, some 90% were fully vaccinated as of April 9. At WDC, 99% of residents were fully vaccinated, and 91% of residents at Hogan were fully vaccinated as of April 9.

In provider-run residences, 75% of residents were fully vaccinated, although18% had not gotten their first shot as of April 12.

The graphs below illustrate the differences in numbers of persons getting vaccinated among the different settings, and differences in vaccination levels between staff and residents. 

The graphs show that relatively large numbers of staff were still unvaccinated (the orange bars) in the provider and state-operated group homes, while the numbers of unvaccinated residents in all of the settings (the yellow bars) were much lower.

Data appear to show resistance by staff to vaccinations

Vaccination data regarding state-run and provider-run group homes appears to imply that there is a relatively large group of staff that are resisting getting the vaccine. 

For instance, of the 1,596 staff in DDS state-run group homes who did get a first dose of the vaccine as of Feb. 16, most appear to have gone on to get their second shot as of April 9. A total of 1,728 staff in the state-run group homes were fully vaccinated as of April 9, up from 277, as of February 16.

However, 1,966 staff had still not gotten their first shot as of February 16. And the data indicate that only 279 of those staff had gotten their first dose as of April 9. That left 1,687 staff still unvaccinated in the state-run group homes as of that April date.

As a result, the number of unvaccinated staff in the state-run group home system dropped by only 7.8% between February 16 and April 9, declining from 55.2% to 47.4%. 

Decline in COVID-19 in the DDS system may have stalled

As some staff have apparently continued to resist getting vaccinated, the rate of decline of COVID in the DDS system appears to have stalled.

For DDS state-operated group homes, a low in the infection rate was reached as of March 30, when 9 residents and 12 staff tested positive. That is compared to highs of 43 residents testing positive in January, and 111 staff testing positive in December. 

But as of April 20, the latest date for online data, the number of COVID positive residents in the state-operated group homes was still at 9, and the number of positive staff had crept up to 14.

In the provider-operated group homes, a low of 29 positive residents was reached as of March 23. That number was up to 31 residents as of April 20. No information is made available by the administration, for unknown reasons, on the number of staff testing positive in provider-operated homes.

At the Hogan Center, no staff or residents have tested positive since February; but at WDC, as many as 5 staff tested positive as of April 13 and April 20. No exact number is given for 5 or fewer persons testing positive in a given setting. Zero residents at WDC have tested positive since January.

So it may be the case that as long as at least some staff are continuing to resist getting vaccinated, the number of staff and possibly even of residents in the DDS system who get COVID may never reach zero.

There have been no deaths in either ICF from COVID since last November. But there have continued to be as many as five deaths per week in the group homes as recently as of April 13. That lower number of deaths in the ICFs may also reflect the fact that the vaccination rate among staff and residents in the ICFs has been higher than in the group homes.

We can only speculate as to whether the administration considers it a problem that the vaccination rate among staff in the DDS system is still as low as it is. Neither Health and Human Services Secretary Mary Lou Sudders nor DDS Commissioner Jane Ryder has responded to our multiple requests for comment about the vaccination process in the DDS system.

Until and unless the Baker administration decides that the public has a right to know their thinking on this, we will have to keep guessing.

Data received last week from the state show that as of early March, more than 80% of residents and a little over 50% of staff in residential facilities directly run by the Department of Developmental Services (DDS) had been fully vaccinated for COVID-19.

One would assume that by now, all residents in the DDS system and most of the staff have been vaccinated. But the numbers are almost a month old, and DDS said it does not have vaccination data on residents or staff in provider-run homes.

DDS provided the vaccination numbers for the sate-run facilities on March 29 in response to a Public Records Request we had sent on February 18.

Vaccination data also provided on March 29 by the Executive Office of Health and Human Services (EOHHS) in response to the same Public Records Request does include numbers on vaccinations of residents and staff in provider-run homes. But the EOHHS data is even more out of date than the DDS data.

A spreadsheet provided by EOHHS is dated February 23. The EOHHS data showed that as of February 23, 24% of staff and 38% of residents in the DDS provider-run group home system had been fully vaccinated. EOHHS is the state’s umbrella human services agency, and DDS is located under it.

The chart below, based on the DDS data, therefore shows the most up-to-date information we have from the administration on vaccinations in the DDS system:

On April 1, I submitted a new Public Records Request to EOHHS, this time asking for current data on vaccinations in both provider-run group homes and state-run residential programs.

In addition to the lack of up-to-date vaccination data, both EOHHS and DDS said they did not have any records on numbers of staff or residents refusing vaccinations. We think the difficulty involved in getting this information on vaccinations in the system is troubling.

Since last May, the Baker administration has been posting at least some information in its online weekly state facilities reports on COVID test results of residents and at least some staff in the DDS system. But getting information on vaccinations is another story.  

COVID test results continue to be promising

Those COVID test results continue to be encouraging, apparently reflecting the large numbers of residents and staff that have been vaccinated.

As of the March 30 state facilities report, residents testing positive in both state and provider-run group homes declined to some of their lowest levels since the COVID crisis began. There have been no residents or staff testing positive at either the Hogan Regional Center or the Wrentham Developmental Center since late February. There have been no deaths of any residents in either facility due to COVID since last November.

The numbers of infected residents and staff in DDS state-operated group homes and in the two developmental centers have also declined to all-time lows since the crisis began.

As of March 30, 9 residents and 12 staff in state-operated group homes tested positive, compared to highs of 43 residents testing positive in January, and 111 staff testing positive in December.

In the provider-run group home system, 32 residents tested positive as of March 30, compared to a high of 305 in January. As we have previously noted, no information is made available by the administration, for unknown reasons, on the number of staff testing positive in DDS provider-operated homes.

Administration won’t comment on the vaccinations or test results

In February, I emailed both EOHHS Secretary Mary Lou Sudders and DDS Commissioner Jane Ryder, asking for comment on whether the vaccines were responsible for the declining numbers of infected persons in the DDS system even at that early period in the vaccination effort. Neither Sudders nor Ryder ever responded. Why the administration won’t comment on this is perplexing.

Month-long delay in providing records

On February 18, I filed an initial Public Records Request with both EOHHS and DDS, asking for:

 1. Records and internal emails that discuss projected timeframes for vaccinating residents and staff in DDS residential facilities; and

2. Records indicating the number of residents and staff who have been vaccinated in DDS residential facilities, broken down by type of facility.

On February 23, I additionally asked for:

3. Records indicating the number of staff and residents in the residential facilities who have refused vaccinations.

As noted, neither DDS nor EOHHS responded with any records until March 29. In its response, DDS stated that it had no internal emails discussing vaccination time frames. While EOHHS did indicate that it had such emails, the agency said it would only provide them if we were willing to pay $1,150 for search and redaction fees.

Also, as noted, both agencies said they had no records on numbers of individuals refusing vaccines.

While DDS had no internal emails on vaccine timelines, the Department stated that the administration had placed residents and staff in congregate care settings under Phase 1 of its vaccine distribution plan. Phase 1 ran from December 2020 through February 2021.

What we know now

At this point, all we can say with any degree of certainty is that most of the residents in state-run congregate care facilities in the DDS system have probably been vaccinated by now. The rest is pretty much conjecture despite our repeated efforts to get more concrete information out of the administration. Those efforts have now included filing two Public Records Requests.

In a letter, dated March 24, to the “DDS community,” Ryder maintained that the administration had heard the “voice” of that community in responding over the past year to the pandemic. “Your voice was instrumental in driving and shaping these developments. You let us know when our policies and protocols went too far – or not far enough,” she wrote.

Ryder added that, “DDS remains committed to hearing your voice, and keeping you informed and engaged as we go.”

If Commissioner Ryder is truly committed to hearing our voice and keeping the DDS community informed, she can start by providing up-to-date information on vaccine distribution in the system, and by responding to our repeated requests for her comment on these matters.

Reflecting a decline in COVID-19 infection rates in the state as a whole, the latest data available in weekly state facilities reports show a drop-off in recent weeks in the numbers of persons testing positive in the Department of Developmental Services (DDS) system.

While that decline appears to be at least partly due to vaccinations that have been ongoing in the system, Baker administration officials have not yet responded to our request last week for comment on the possible trend.

Here are some COVID testing numbers in various DDS residential categories, taken from the latest state facilities report as of February 9, and from previous reports:

DDS state-operated group homes

The number of residents in state-operated group homes testing positive for COVID-19 reached a high of 43 as of January 26, and dropped to 18 as of February 9.

The number of staff in those residences testing positive reached an all-time high of 111 as of December 22, and dropped to 60 as of February 9.

DDS provider-operated group homes

The number of residents in provider-operated group homes testing positive reached an all-time high of 305 as of January 19, and dropped to 111 as of February 9.

There are no data specifically regarding COVID-positive staff in DDS provider-operated group homes.

Wrentham Developmental Center (WDC)

The number of residents at WDC testing positive reached an all-time high of 11 as of January 12, and dropped to 0 as of February 9.

The number of staff at WDC testing positive reached an all-time high of 32 as of January 12, and dropped to 12 as of February 9.

Hogan Regional Center

The number of residents at Hogan testing positive reached a high of 8 as of January 12, and dropped to 0 as of February 9.

The number of staff at Hogan testing positive reached an all-time high of 23 as of December 29, and dropped to less than 5 as of February 9.

Below is a graph showing the positive test curve for provider group home residents since last June. It’s typical of the data arc for the other categories:

Possible role of vaccinations

It appears possible that the recent decline in COVID positive test results in the DDS system is at least partly due to the introduction of vaccines in DDS facilities.

Phase 1 of the state’s Vaccination Plan included residents and staff of DDS long-term care and congregate-care facilities as priority vaccination recipients. But there has been no information provided by the administration on how many DDS residents and staff have been vaccinated so far.

CNN reported Sunday that officials were hopeful that for the nation as a whole, the continued ramping up of vaccinations was “beginning to shift the pandemic’s course in a positive direction.”

Little information available on vaccinations in the DDS system in Massachusetts

The Baker administration recently began publishing online information showing the number of vaccine doses shipped to Massachusetts and the number administered to residents, broken down by age, gender, county, race, and ethnicity. But the online data does not break the numbers down by disability or show how many people have been vaccinated in the DDS system.

On Friday (February 12), I emailed state Health and Human Services Secretary Marylou Sudders and DDS Commissioner Jane Ryder, asking whether they would agree that there has been a potentially significant drop in COVID-positive residents and staff in the DDS system.  I also asked whether that drop might be due to the vaccinations of residents and staff in the system. As noted, I haven’t yet received a reply.

The decline in positive test results could be temporary

The CNN article noted above reported that some 38 million people have received their first dose of the two-dose vaccines available to the US market, and about 14 million people have been fully vaccinated.

But the article stated that while Covid-19 numbers may be trending in the right direction now, four key factors will determine whether those trends continue. Two factors contributing to the downward trajectory in infection rates are the increasing vaccinations and a pattern of lower transmission that’s likely in the US during the spring and summer months.

Two other factors, however, can slow or even reverse the declines. One of those factors is the spread of the B.1.1.7 variant, which was first identified in the UK. Another key factor is increased behaviors that favor COVID-19 transmission such as frequenting high-risk settings, including indoor dining.

The article reported that experts believe now is not the time for the US to let down its guard, “even as a growing list of governors loosen Covid-19 restrictions.”

We will continue to monitor the state’s COVID testing reports for DDS facilities. While those reports could be more informative — they should include test results for provider staff, for instance — they at least provide measurable data on COVID infection rates in the DDS system.

We hope the administration will begin to provide similar online information on vaccine doses administered in the DDS system so that we can all better understand ongoing COVID trends in that system.

Group homes and developmental centers in the Department of Developmental Services (DDS) system have a number of options for obtaining COVID-19 vaccines and administering them to their residents and staff, as part of a major vaccination effort that officially begins this week.

In a letter to families that she issued last week, DDS Commissioner Jane Ryder termed the DDS vaccination program “complex,” and said the timing will vary by provider.

Ryder said that vaccinations of both residents and staff of DDS residential congregate care programs would officially begin this week, and that vaccinations of “home-based healthcare workers” would begin in early February.

Ryder said that latter category of staff slated for vaccinations in early February includes shared living providers, home-based respite, individual/family support staff who provide in-home services, and “participants who self-direct their services.”

Provider options for vaccinations

In guidance issued last week, the Department of Public Health (DPH) outlined three options available to group home and other congregate care providers for obtaining and administering the vaccines. Those options are “self-administration,” which involves receiving the vaccines directly from DPH; existing partnerships with pharmacies and other healthcare providers; and scheduling vaccinations at mass-vaccination sites.

In her letter, Ryder discussed the latter two methods, but didn’t mention the self-administration option. She said the partnerships apply to providers that have relationships with either CVS or Walgreens to provide and administer the vaccinations.

In some of those cases, vaccinations have already begun, Ryder said. That appears to explain an apparent discrepancy between the reports we received about some vaccinations having started prior to this week, and the official announcement that vaccinations in DDS group homes would start this week.

As part of that partnership option, Ryder said, some providers are arranging with local pharmacies or healthcare providers such as a local hospital or community health center to have vaccinations delivered and administered to residents and staff.

Self-Administration Option

The DPH guidance lists a primary option for congregate care facilities of directly receiving and administering vaccines from DPH (“self-administration”).  The guidance states that this option “is likely to be the most convenient for staff and residents and the quickest method for them to obtain the vaccine.”

However, as noted, Commissioner Ryder didn’t mention this option in her letter. In an email query to Ryder last week, I asked if that meant that none of the DDS group home providers meet the qualifications for the self-administration option, which include having the capacity to vaccinate 200 persons and having refrigeration storage capacity for the vaccines. To date, I haven’t received a reply.

Ryder’s additional points

In her letter, Ryder listed additional points about the vaccines in the DDS system:

• Vaccination is voluntary for staff and residents.
• DDS is seeking consent from legal guardians prior to residents receiving the vaccine.
• Surveillance testing and infection control measures, including the use of face masks and PPE, hand hygiene, and social distancing, will remain in place until further notice.

More information on getting vaccinated in congregate care settings is available here.

Latest COVID test results:

Meanwhile, the administration’s latest online COVID test data for congregate and long-term care facilities shows some mixed results for COVID in the DDS system. The COVID situation had looked last week as though it was improving in the system, but this past week’s report showed the infection numbers headed back up for provider group home residents and staff, and for Wrentham Developmental Center residents and staff.

Provider group home residents testing positive jumped from 236 to 280 in the week ending Tuesday, January 12. New results will be posted online tomorrow (January 20).

The latest report shows the Hogan Regional Center holding steady on the number of residents testing positive. There was even a drop in the number of staff infected, from 14 to 9 at Hogan this past week. But Wrentham saw a sharp increase in staff testing positive — from 14 to 32, while residents testing positive went from 3 to 11.

Please let us know what your experience has been with the vaccination program in the DDS system.

UPDATE to our previous Update:

Department of Developmental Services (DDS) Commissioner Jane Ryder issued a letter to families and providers this afternoon (January 13), stating that vaccinations of both residents and staff in DDS state-run and provider-run group homes will begin next week, the week of January 18.

This is in line with what Governor Baker announced today (see below), but seems to contradict information earlier this week from DDS that the vaccinations were starting this week.

We have also heard from some families of group home residents who were informed that vaccinations were starting this week.

Ryder also stated in her letter that vaccinations of home-based healthcare workers will begin in early February. For DDS, that includes shared living providers, home-based respite, individual/family
support staff who provide in-home services, and participants who self-direct their services.

Ryder also forwarded guidance from the Department of Public Health on vaccine distribution in congregate care facilities.

Elizabeth Morse, DDS deputy commissioner for operations, had stated in an email on Monday that the vaccination program was starting in DDS congregate programs this week.

Morse said a “small amount of vaccines” were previously distributed to the Hogan Regional Center and Wrentham Developmental Center “to help get the vaccine clinics set up.”

Governor provides some details

In a news briefing today, Governor Charlie Baker said the vaccines would be administered in congregate care settings starting on Monday, the 18th. However, as noted, Morse said the vaccination program was starting in the DDS settings this week.

According to The Boston Globe, the governor said congregate care facilities “can administer the vaccine in multiple ways.” Those facilities can self-administer the vaccine on site if they meet certain criteria, work with an existing pharmacy or provider to provide the vaccinations, or use mass vaccination sites such as one opening Monday for first responders at Gillette Stadium.

Earlier this week, we heard from a number of family members of DDS group home residents that the vaccinations were scheduled to start this week or next week for both residents and staff.

The providers were still waiting earlier this week for guidance from DDS on the vaccines. One family forwarded an email from their provider, dated Monday, informing them that, “Once we have a definite plan for vaccination, we will be reaching out to all families and guardians to let them know.”

A COFAR member received word last week from a medical staff person at the Wrentham Center that staff at the center were first in line for vaccinations, and were starting that day (January 5). However, the COFAR member was also told the center received less than half the necessary doses of the vaccine needed for the staff, which is listed at 850 persons.

DDS developmental centers and group homes fall under Phase 1 of the state’s vaccination plan, but have not been at the top of the Phase 1 order.

The Phase 1 order, which began in December and is scheduled to run through February, is:

1. Clinical and non-clinical healthcare workers doing “direct and COVID-facing care”
2. Long-term care facilities (which apparently include the Wrentham and Hogan Centers and nursing homes)
3. Police, fire, and emergency medical services
4. Congregate care settings (which apparently include DDS group homes, shelters, and prisons)
5. Home-based healthcare workers
6. Healthcare workers “doing non-COVID-facing care.”

Phase 2 of the distribution plan, which is scheduled to run from February through April, includes members of the general population with two or more medical comorbidities, residents over age 75, teachers, grocery workers, sanitation and public health workers; residents over 65, and individuals with one comorbidity.

The vaccines are projected to be available to members of the general public in Phase 3, which runs from April through June.

We will report to you on the promised additional details about vaccine distribution in the DDS system as soon as we hear about them.

Information continues to be sparse and confusing over COVID-19 vaccinations and testing of residents and staff in the Department of Developmental Services (DDS) system.

All of the information we have gotten so far regarding vaccine distribution in the system has been in the form of unofficial reports to COFAR members from facility staff. We heard unofficially, for instance, that staff at the Wrentham Developmental Center began receiving vaccinations last week, but that less than half the necessary doses were available for the center’s 850 staff.

At the same time, we were told late last week that an initial unofficial report that residents and staff at the Hogan Regional Center had gotten vaccinated in late December was false, and that no one at Hogan had yet gotten the vaccine. As a result, we have corrected our January newsletter, which had initially reported the incorrect information.

Unfortunately, our repeated attempts to get official information about the vaccine distribution in the DDS system either from Health and Human Services Secretary Marylou Sudders or from DDS Commissioner Jane Ryder have been rebuffed.

Infection rate may be leveling off

Amid all the confusion and uncertainty, there appears to be some potentially good news that the number of residents testing positive in the DDS system may be leveling off after a second COVID surge that began in October.

Our chart below is based on the administration’s latest official weekly state facilities report, and shows the results of COVID testing of residents in provider-operated group homes.

Administration officials not responding to emails

So far, however, we haven’t gotten a clear picture of the vaccine distribution situation.

On December 2, I emailed both DDS Commissioner Ryder and HHS Secretary Sudders to ask whether the Baker administration would include DDS residents and staff in its plans for distribution of the first doses of the vaccine that Massachusetts received. I never received a response to that query.

While the administration did issue a general vaccine distribution plan in early December, the plan doesn’t mention or make clear how DDS clients and staff fit into the overall picture.

When we heard that the unofficial report was false that vaccinations had been given at the Hogan Center, I sent a second email last week (January 7) to Sudders, Ryder, and DDS’s ombudsman asking for any information they could provide about the vaccination schedule in the DDS developmental centers and group homes. Again, no answer.

On Saturday (January 9), I emailed Marylouise Gamache, EOHHS ombudsman, with the same question. No answer so far.

In addition to the confusion over the developmental centers, it remains unclear when DDS group home residents will get the vaccine, and where those residents fall within Phase 1 of the state’s vaccine distribution plan. It appears all residents of DDS group homes and developmental centers are included in Phase 1 of the plan, which stretches through February. But it is unclear as to whether group home clients, in particular, are closer to the top or the bottom of the Phase 1 priority order.

As one COFAR member put it, it doesn’t seem as though it should be difficult for the administration to provide information for DDS families and guardians about the vaccination schedule and dosages delivered and administered. We think that data could easily be added to the online weekly state facility reports.

COVID testing in DDS system indicates some leveling off of the rate of infection

As noted, the picture may be improving regarding COVID testing in the DDS system. The infection numbers in the administration’s latest weekly report are still relatively high, but the peak may have occurred as of the Dec. 22 reporting date when 248 residents were listed as COVID positive. That number of positive residents was down to 236 as of last week’s reporting date on Wednesday. (See chart above.)

The numbers in those weekly reports for infected staff in provider residences are actually two weeks behind. Even so, that positive test rate may have also leveled off. The latest weekly report shows the positive test rate for provider staff in all EOHHS group homes was 3.12% as of the latest reporting date of Dec. 23, down from 3.16% as of Dec. 9.

Hopefully those downward numbers will continue, but it may be too early to say this is a downward trend.

Reporting of testing results should include tracking of “long-haul” effects

We have previously reported that the administration’s public reporting of testing results of both residents and staff in the DDS system has been spotty. For instance, while the weekly facility reports finally began to include information about provider staff testing positive, the numbers are for all human service provider agencies, not just DDS.

We would also like to see tracking of “long-haul” effects on residents and staff in the DDS system. Long-haul effects are lingering complications from the virus that can be debilitating even if individuals have recovered from the immediate effects of the infection.

The weekly reports do track what is termed “current clients recovered.” The reports define clients recovered as those who have tested negative or have met symptom and time-based recovery guidelines. Our guess is someone could meet those guidelines and still have long-haul effects of the virus.

Also, the numbers in the reports are apparently not cumulative because the reports state that those numbers don’t include “all recoveries over time.”  They are listed as  “current clients recovered” each week.

For months, we have been saying that we need more and better information from the administration about its response to the virus. While the administration has made some strides in this area, the continuing lack of communication about vaccine distribution, in particular, is frustrating and disturbing.

Residents of Department of Developmental Services facilities will get vaccinated in January, according to an email this week from DDS Commissioner Jane Ryder to a COFAR member.

Ryder’s message still seems ambiguous, however, as to exactly where DDS residents fall within Phase 1 of the state’s COVID-19 Vaccine distribution plan.

It appears residents of DDS group homes and developmental centers are included in Phase 1 of the plan, which stretches from this month through February. But DDS facilities are not specifically mentioned in the plan, and Ryder’s statement appears unclear as to whether DDS clients are closer to the top or the bottom of the Phase 1 priority order.

On December 2, I emailed both Ryder and state Health and Human Services Secretary Marylou Sudders to ask whether the Baker administration will include DDS residents and staff in its plans for distribution of the first doses of the vaccine that Massachusetts gets.

To date — two weeks later — there has been no response from either Ryder or Sudders to my query.

However, in a Monday email to a COFAR member, who had asked the same question, Ryder wrote the following:

We are all so optimistic now that the vaccines have begun to arrive in Massachusetts. The vaccinations of our group homes are in Phase 1 of the Governor’s distribution plan. Hospital and Long Term Care facilities will be first.  We expect that group homes will come on line in January. (my emphasis)

We are currently working with the Department of Public Health and the Command Center in the logistics.  We will be keeping all families informed as we finalize the plan. The most important thing we are stressing is the importance of continued vigilance including mask wearing, good hygiene and social distancing.

First, we are not exactly sure what Ryder means in saying group homes will “come on line.” But we think she means everyone in the group home system will get vaccinated in January. If so, that would seem to be good news because Phase 1 is supposed to stretch from December through February.

However, what is ambiguous and possibly misleading in Ryder’s message is that it appears — if you don’t read it carefully — to include group homes in the category of long-term care facilities. Moreover, Ryder says those facilities “will be first.”

In fact, long-term care facilities aren’t first on the priority list under Phase 1, and it doesn’t appear that group homes are even considered long-term care facilities on that list.

The Phase 1 order (see below) lists long-term care facilities as second on the vaccine priority order, behind healthcare workers. Secondly, we think the group homes category actually falls under congregate-care settings, which is fourth on the list.

As noted, the state’s COVID-19 Vaccine Plan doesn’t actually mention DDS group homes. The Phase 1 order is:

1. Clinical and non-clinical healthcare workers doing “direct and COVID-facing care”
2. Long-term care facilities, rest homes, and assisted living facilities
3. Police, fire, and emergency medical services
4. Congregate care settings (including corrections and shelters)
5. Home-based healthcare workers
6. Healthcare workers “doing non-COVID-facing care.”

If you read Ryder’s statement carefully, she does not actually say group homes fall under long-term care facilities. Her statement seems carefully worded. As we mentioned, Ryder’s statement makes it sound as though group homes are first on the list. But we don’t think they are.

While we are sure that most DDS families and guardians would not second guess the Phase 1 priority list, we think those families have a right to clear and accurate information about where their loved ones fall on that list. We hope either Commissioner Ryder or Secretary Sudders are willing, as Ryder says they are, to provide that clear information.

Additional information about the state’s vaccine distribution efforts can be found here.

In the wake of a recommendation earlier this week from a federal advisory panel that healthcare workers and residents of long-term care facilities get the first doses of the coronavirus vaccine, COFAR has asked the Baker administration whether that would include residents and staff in the Department of Developmental Services (DDS) system.

So far, we haven’t gotten an answer.

According to a Politico article, the recommendation on Tuesday of the advisory panel to the Centers for Disease Control (CDC) isn’t binding. But the article stated that many states that are putting together vaccination plans are looking to the CDC as a guide.

In an email on Wednesday morning to state Health and Human Services Secretary Marylou Sudders and DDS Commissioner Jane Ryder, I asked whether the Baker administration will include DDS residents and staff in its plans for distribution of the first doses of the vaccine that Massachusetts gets.

It appears the primary thrust of the recommendation on Tuesday of the CDC panel is to ensure the early vaccination of residents and staff of nursing homes and other long-term care facilities for the elderly.

Protecting residents of nursing homes from COVID-19 has been a priority of the Baker administration as well, given the large number of those residents that have died from the virus.

In my email to Sudders and Ryder, I noted that we support the early distribution of the vaccine in nursing homes, assisted living facilities, and correctional centers. But we want to make sure the DDS system is included in those distribution plans, and that it is clear that both group homes and developmental centers in the DDS system fall into the category of long-term care facilities, in the view of the administration.

We have long been concerned that the administration has overlooked the DDS system in its efforts to protect the state in general from the impact of the COVID pandemic.

The Politico article stated that Trump administration officials say that up to 40 million doses of vaccines from Pfizer and Moderna will be available by the end of 2020. That is enough to vaccinate 20 million people. Between 5 and 10 million additional doses are anticipated to be available per week in early 2021.

Pfizer and Moderna are both seeking FDA authorization for their vaccines.

End to lockdown

The vaccinations will obviously bring an end to the ongoing isolation of DDS clients in group homes and developmental centers. Those residents have been subjected to increasingly strict and often inconsistent lockdown measures during the current surge of the virus.

Most of the increased COVID cases in the DDS system have been among staff, but the burden of the lockdown has fallen most heavily on the residents themselves.

Deaths among DDS residents do not currently appear to be rising; but, as of the latest two-week surveillance testing period ending November 25, the number of staff testing positive for the virus in DDS provider-run group homes had risen from 504 to 526.

As of December 1, the number of residents testing positive in provider-run group homes actually appeared to be leveling off from the week before, at 175.

We’re sure that all of the residents in the DDS system and their families would like to know how the Baker administration is interpreting the CDC’s definition of long-term care facilities with regard to distribution of the vaccines. We hope we get an answer from the administration soon.