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Our January 2021 special issue of The COFAR Voice on COVID-19 is here

December 30, 2020 2 comments

We’ve just published a special issue of our newsletter, The COFAR Voice, which is devoted to the impact of the COVID-19 crisis on the DDS system, and how the Baker administration has
responded to it.

We also look ahead to the end of the pandemic, and we raise some questions about its potentially lasting impacts on care and services to people with intellectual and developmental disabilities.

Included in our January issue are articles on:

  • The slow response of the administration to the COVID crisis, and questions about what the pandemic portends for the future of DDS care
  • How a mother is dealing not only with separation requirements during the pandemic, but is fighting to keep her co-guardianship of her son
  • Vaccines are coming, but the timing is uncertain for residents and staff in group homes
  • How confusion continues to hamper visitation during the pandemic
  • How the administration dragged its feet on testing of staff for COVID-19

You can link to the newsletter here and on our website. As usual, we value your feedback. Please feel free to comment on this site, or email us directly. Contact information is included on the back page of the newsletter.

While we are critical in the newsletter of the often slow and after-the-fact response of the administration to the pandemic with regard to the DDS system, we also want to recognize the heroic efforts made during the past several months by staff throughout the system.

Frontline personnel, from direct-care staff to clinicians, have put their lives on the line every single day of this crisis. An undetermined number of staff have died as a result of the virus. Their work on behalf of the most vulnerable in our society should never be forgotten.

DDS residents are likely to get vaccinated in January, but questions remain about vaccine priority list

December 16, 2020 6 comments

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.

Update: DDS says no new visitation guidance needed because providers need flexibility on COVID

December 8, 2020 1 comment

The Department of Developmental Services (DDS) is defending the discretion it gives to providers to restrict visits by families to residents in the system, and will apparently not update its September 23 visitation guidance in order to provide standards for visitation restrictions.

Christopher Klaskin, a DDS spokesman, stated in a December 2 email that the September 23 guidance “permits flexibility for providers to address COVID-related health and safety concerns specific to their residential sites.”

In a post here on December 1, we reported that we had raised a concern with DDS that the Department appeared to be giving too much discretion to the providers, resulting in some cases in contradictory and overly restrictive visitation policies.

The September 23 DDS guidance, for instance, permits in-house visits by family members. But an undetermined number of providers have recently issued bans on in-house visits in light of rising COVID rates in the DDS system.

Also, different providers appear to have adopted widely varying and sometimes onerous policies on testing and quarantining residents after the residents have left group homes even for short visits to their family homes.

In an initial email on November 30 to DDS Commissioner Jane Ryder, we stated that the biggest COVID risk to residents in the DDS system does not appear to come from family members who visit under controlled conditions, but from staff who face few restrictions in going in and out of group homes.

For instance, DDS currently has no requirement that providers ban staff from entering a group home even if they have just previously been in another residence where individuals had the virus. Yet some providers are currently banning in-house visits by family members entirely, regardless of whether those family members have otherwise been isolating themselves from social contact.

In his December 2 response to us, Klaskin stated that:

The DDS congregate care system is diverse so this flexibility (in visitation requirements) is needed to account for differences like populations being served, provider staff capacities, geographic locations of group homes and COVID-positive data in their area.  Specifically, providers are permitted to amend the (September 23) policy when (1) a resident, visitor or staff tests positive, or (2) visitation cannot be safely accommodated.

In a written response to Klaskin and Ryder on December 4, we noted that the question we have about their argument is that it isn’t clear to us that any of the factors Klaskin cited could account for the wide variations in the providers’ policies on visiting, quarantining and testing in connection with in-home and off-site visits.

One provider has not allowed any indoor visits by families since March, according to a family member. The provider has also sharply limited outdoor visits by families, and banned visits by residents out of the group home to their families.

Another provider allows off-site visits, but has required that residents taken off site receive a negative COVID test less than 48 hours before returning to a group home or other DDS-funded setting.

Yet another provider requires a resident taken for an off-site visit to remain at the family home for 14 days before even getting tested. Even if the test is negative, the provider’s directive states that the resident must remain in isolation in the group home for an additional 72 hours and then needs a second COVID test.

While we understand the need for flexibility and some discretion on the part of the providers in these situations, the problem is that there appears to be no overriding guidance as to when and under what circumstances that flexibility should be exercised. At what point does in-home visitation become unsafe, for instance? Each provider is left to make their own assessment of that threshold.

Klaskin’s email to us also did not address the area in which we think the COVID risk in the DDS system primarily appears to lie — the largely unrestricted entrances of staff to the residences.

Ultimately, the problem with leaving it almost entirely up to the providers to make decisions in an area like family visitation is that residents and families end up bearing a disproportionate share of the burden of these policies.

Excessive discretion on visits was a similar problem last spring

As we reported last spring, DDS first partially lifted its then almost-complete COVID lockdown in group homes in early June by permitting limited outdoor visits. No in-house visits were yet allowed.

Under those then new visitation rules in June, providers were given discretion to set the terms for the visits and to ban families for perceived violations. We soon began getting reports that some of the restrictions placed on those visits by certain providers were onerous and others inconsistently applied.

We contacted Commissioner Ryder at that point, and DDS finally issued its September 23 guidance document. That new guidance loosened some of the restrictions and began allowing in-house visits.

But, as Klaskin noted to us in his December 2 email, even that September document continued to give the providers the discretion to override the Department. As a result, we have begun to get calls once again from families about excessively restrictive visitation policies.

Having visits from family members and friends is one of the fundamental rights of clients in the DDS system. DDS shouldn’t be leaving it almost entirely up to its state-funded providers as to how to interpret that right.

COFAR asking Baker administration whether DDS residents and staff will be among first to get COVID vaccine

December 4, 2020 7 comments

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.

Outdated DDS visitation guidance leads to contradictory provider policies

December 1, 2020 1 comment

The Department of Developmental Services appears to be leaving it up to its residential providers to impose family visitation restrictions in light of the latest surge in COVID-19 cases in the DDS system.

This appears to have resulted in inconsistencies and contradictions among visitation policies among different providers, and potentially overly restrictive policies on testing and quarantines in some cases.

The last time DDS appears to have updated its visitation guidance was September 23, prior to the current COVID surge.

I sent an email query on Monday (November 30) to DDS Commissioner Jane Ryder, asking whether she intends to update the Department’s September 23 guidance on visitation, and whether some standardization of requirements for indoor visits and quarantines might be necessary. I haven’t yet received a response to my query, which was also sent to the DDS ombudsman.

Indoor visits banned, contradicting DDS guidance

At least three providers have recently banned indoor visits entirely by family members, and enacted varying requirements for testing and quarantining group home residents who were taken by family members home for Thanksgiving and other visits.

One provider is banning all visits of group home residents to their family homes until further notice.

The September 23 DDS guidance permits indoor visits by family members and allows off-site visits by residents.

The same provider, however, has not allowed any indoor visits since March, according to a family member. The provider has also sharply limited outdoor visits, and, as noted, banned out-of-group home visits.

In a directive issued last week, a second provider stated that visits to its group homes would only be permitted outdoors or via Zoom or Facetime.

Another provider stated that on-site visitation was being suspended until further notice “due to rising COVID rates nationally and in the state.”

Contradictory directives on quarantines after off-site visits

Different providers appear to have adopted widely varying policies on quarantining residents after the residents have left group homes even for short visits

One provider allows off-site visits by residents, but has lately required a three-day quarantine of any resident who is taken out of the group home.  Another provider now requires a 14-day quarantine for any resident taken out of state.

As one family member said, however, it is very upsetting to residents to be subjected to multi-day, in-room isolation after returning to a group home, and it results in “very little benefit.”

The September DDS guidance does not require quarantines if residents are taken off site, but states only that they must be monitored for 14 days after returning to their group homes. Quarantines are required only if the resident shows symptoms.

Providers have different requirements on testing after off-site visits

Providers similarly appear to have contradictory policies regarding COVID testing after off-site visits.

One provider has required that residents taken off site receive a negative COVID test less than 48 hours before returning to a group home or other DDS-funded setting.

Two other providers, however, appear to require residents taken off site to wait a minimum of 72 hours between getting tested and returning to the group home.

One of those providers requires the resident to remain at the family home for 14 days before even getting the test. Even if the test is negative, the provider’s directive states that the resident must remain in isolation in the group home for an additional 72 hours and then needs a second COVID test.

Staff don’t appear to be subject to similar restrictions

As we have reported, the biggest jump in COVID infections in the DDS system, in terms of absolute numbers, appears to be among staff.

The number of COVID-19 positive staff in all provider-operated group homes (in DDS and other agencies in the Executive Office of Human Services) rose by more than 100% in the two-week period ending November 11.  Yet, it is clear that staff regularly go in and out of group homes without the need for quarantines, in particular, unless they are symptomatic.

We have long suspected that the biggest risk to residents in the DDS system does not come from family members who visit them either outdoors or indoors under controlled conditions, but from staff who face few such restrictions.

We think DDS needs to reassess where the risks in the current COVID surge really lie, and to adjust their guidance accordingly. The burden imposed by restrictions on visits should not fall disproportionately on the families and the residents themselves.

Moreover, that updated guidance should be followed by all providers.

State data appear to show COVID has been the leading cause of death this year in the DDS system

November 24, 2020 2 comments

Data obtained by COFAR from the state under a Public Records Law request unsurprisingly appear to show that COVID-19 has been the leading cause of death in the Department of Developmental Services (DDS) system since January.

Despite that, deaths among residents in the DDS system fortunately do not appear to be currently rising at as rapid a rate as COVID infections are rising among those residents. Most of the COVID-related deaths appear to have occurred during the first peak-COVID period in the state as a whole, in April and May.

The highest rate of COVID infection in the DDS system currently appears to be among staff. But the current death rate, if any, among staff isn’t publicly known. The Baker administration does not publish any current data on deaths among staff in the DDS system.

Data provided by the Disabled Persons Protection Commission (DPPC) under a public records request indicate that of the 650 residents in the DDS system who were reported to DPPC to have died between January 1 and November 4 of this year, the largest single reported cause of death has been COVID-19.

A total of 143 of the 650 reported deaths in the DDS system — or 22% — were reported to be due either solely or partly to COVID. That total includes numbers of cases where COVID was one of multiple reported causes.

Meanwhile, the number of COVID-infected residents and staff has surged in the DDS system in recent weeks. As shown in the first graph below, the number of DDS provider-operated group home residents testing positive for COVID-19 rose from less than 20, in one week in mid-October, to 131 as of the seven-day period ending November 17.

The graphs are based on weekly online state facilities data from the administration.

As the second graph shows, the number of COVID-19 positive staff in all provider-operated group homes (in DDS and other agencies in the Executive Office of Human Services) rose from 245 in the two-week surveillance testing period ending October 28, to 504 in the two-week period ending November 11.  That is an increase over the previous two-week period of more than 100%. The number of COVID tests increased over the previous period by only about 12%.

 

Source: EOHHS online weekly state facilities reports

At the same time, deaths among residents in the DDS system do not appear to be increasing at anywhere near the same rate as COVID infections. The rate of deaths of residents has stayed at less than five deaths per week in the DDS group home system since the end of October.

Between five and 10 deaths were recorded in the state’s two developmental centers in November, which does mark an increase over the absence of any deaths in the centers between the end of June and this month.

Data on causes of deaths are difficult to interpret

Data on causes of deaths, provided by DPPC, are not always clear and can be difficult to interpret. The data are based on causes of death as reported at or near the time of death to DPPC, and therefore appear to be unofficial.

As a result, it appears possible that some causes of death listed in the DPPC’s records may differ from causes listed in actual medical records of the deceased clients. However, DDS, which holds those medical records, would not disclose even aggregated numbers from those records of causes of death to us. (More about that below.)

All deaths in the DDS system must be reported at the time to DPPC; and DPPC did agree to disclose the aggregated numbers from those reports of the causes of those deaths.

As the chart below based on the DPPC data shows, COVID appears to have been the leading factor in causes of deaths of DDS clients since January, as reported to DPPC.  Respiratory failure was the second highest factor, followed by cardiac arrest, cancer, and aspiration pneumonia (caused by choking).

Source: Reports to DPPC

One other problem we had in trying to interpret the DPPC data was that many different types and combinations of causes of death were listed by that agency. As a result, we had to try some creative approaches to grouping the data.

For instance, we grouped respiratory failure and pneumonia into one category, and counted 96 deaths in that category, or 14.8% of the total deaths between January 1 and November 4. We would note that if COVID was listed along with respiratory failure or pneumonia, we counted it in the COVID category as well.

That appears to raise a possibility that the total of 143 COVID deaths would be an underestimate of the real number of COVID-related cases in the DDS system if COVID was actually a factor in more of the respiratory failure cases than was reported. It seems possible that in some of those cases, COVID may have been a factor, but wasn’t reported or known at the time to be a cause.

Death rate dropped in the summer

Most of the deaths that have occurred in the DDS system that have been either fully or partly attributed to COVID appear to have happened in April and May. As the graph below shows, those deaths rose sharply from less than five in the second half of March to a total of 56 in each of the months of April and May.

The deaths just as abruptly tailed off from June through the middle of October. It remains to be seen whether what appears to be a slight uptick in the number of deaths in the second half of October will continue.

Source: Reports to DPPC

 

Loophole prevents release of DDS data

As noted above, the data from DPPC on deaths are based on reports to the agency, sometimes on the same day as each death occurred. DDS, which apparently has official causes of death in its records, denied our request for the numbers of clients per month who died from all causes, including COVID.

Due to what we see as a loophole in the state’s Public Records Law, the state’s public records supervisor reversed herself last month, and gave DDS blanket authority to deny our request for that information. DDS claimed the information is kept in confidential patient records and is therefore confidential.

In asking for that same information from DDS, we were not asking, however, for information that could reveal the identify of any particular client. Yet the Public Records Law contains a blanket exemption, known as “Exemption (a),” that states that if a state agency has an enabling statute that says its records are private, that statute overrides the Public Records Law.

(The DPPC has been trying to change its enabling statute to explicitly state that its records are not public, possibly for the reason above. That agency apparently wants to be able to cite Exemption (a) in many records requests. We have opposed DPPC’s attempt to change its statute.)

As we’ve said before, we think there is a compelling need, particularly during the ongoing crisis over the virus, for government to be open and transparent with the public about the impact of the pandemic on the lives and health of ourselves and our loved ones. We see no reason for the apparent bunker mentality that has been adopted by agencies such as DDS in that regard.

Administration now reporting human services staff COVID data, but not specifically for DDS

November 9, 2020 Leave a comment

After months of failing to report the COVID-19 status of staff working in provider-run group homes and other facilities funded by the Department of Developmental Services (DDS), the good news is the Baker administration is at least finally starting to take those numbers publicly into account.

Staff-related testing information is now contained in weekly state facilities reports, which are posted online every Wednesday evening.

The bad news is the testing data listed are for all “congregate care sites operated by state-contracted (human services) providers.” The numbers of provider staff testing positive are not broken down among facilities funded by DDS, the Department of Mental Health, the Department of Youth Services, and possibly other agencies falling within an umbrella agency — the Executive Office of Health and Human Services (EOHHS).

The latest weekly state facilities report doesn’t break the data down by individual provider either. And that’s not to mention that there is still no testing even being done on DDS community-based day program staff.

The newly reported numbers of total EOHHS provider-staff who have tested positive in the past month can be found on Page 6 of the latest weekly report.

In addition to the lack of a breakdown of staff testing numbers by EOHHS department, there are other questions about the nature of the data presented in the latest report. It’s not clear, for instance, what is meant in the report by “congregate care” staff, particularly whether that refers only to group homes or includes larger Intermediate Care Facilities (ICFs) such as the DDS-run Hogan Regional Center and Wrentham Developmental Center.

Also, the Page 6 data reflects two-week testing periods while the rest of the report shows current numbers of COVID cases in the latest week.

This lack of specific and clear information in the weekly reports continues to be concerning, particularly since the data that we do have shows what appears to be the start of a second wave of the COVID-19 virus within the DDS system, in addition to the second wave that has hit the state as a whole.

Data show a surge of provider staff cases

The staff data on Page 6 of the latest weekly state facilities report show that the number of staff testing positive for COVID-19 in all EOHHS provider-run group homes started from a baseline of 240 as of September 30. Those positive provider staff rose  by 91 in the first half of October, and by 245 in the second half of October, based on biweekly surveillance testing.

It is important to note that the baseline number of 240 is not a cumulative number of the total number of staff that contracted the virus since the start of the pandemic, but is only the number found to be positive during baseline testing conducted between August 1 and September 30.

The increase of 336 in positive staff cases during the two biweekly surveillance testing periods in October is a jump of 140%; and it would appear to mean that some 400 staff in provider-run group homes were potentially positive as of October 28.

Of course, the document doesn’t show how many of those staff are in DDS group homes, although DDS does have the largest number of group homes of any EOHHS department.

On page 2 of the report, the data show the number of residents testing positive in DDS provider-run group homes jumped from 46 to 65, as of the 7-day period ending November 3. The number of residents testing positive in state-operated group homes rose in that same period by only 1, to a total of 10.

State-operated “congregate care” staff cases

The number of staff, specifically in DDS, DYS, and DMH state-operated “congregate care” sites are also now listed on Page 6 of the latest weekly state facilities report. The number of those staff testing positive started from a baseline of 6 as of September 30, according to the latest report. Positive staff in those facilities rose by 2 in the first half of October, and by 20 in the second half of October.

Pages 1 and 2 of the weekly state facilities report have continued to list 7-day residential and staff data for both the Hogan and Wrentham facilities and state-operated group homes.

Surge in COVID cases could affect visitation

With the numbers showing, or at least implying, an increase in staff and some residents testing positive for COVID in the DDS system, DDS has indicated that it is leaving it up to providers to determine whether to reimpose restrictions on visitation by family members and guardians.

While visitation had been sharply restricted in the first several months of the pandemic, the latest guidance on the DDS website, which was issued in September, continues to allow both in-home and outdoor visitation.

However, as of the end of October, at least one provider was banning in-house visits. We received a notice from a parent of a resident of a group home run by American Training, a DDS provider, that all visits inside the provider’s group homes would be prohibited due to an increase in COVID rates in the Andover area. The parent said she was told visits to the home would still be permitted outdoors.

In response to a query from COFAR, a DDS spokesman said that despite the Department’s guidance, final decisions on visitation are being left to the discretion of the providers.

Unfortunately, we’ve heard about a number of cases in which providers have used the COVID crisis to ban or discourage visitation in order to keep family members and guardians in the dark about conditions in their homes.

Until a vaccine becomes available, it is clear that the COVID crisis will continue to present a major threat to DDS clients and staff, just as the crisis has for the general population throughout the country.

In the meantime, we hope that the Baker administration will take further steps to improve and clarify its public reporting of the testing status of clients and staff in the DDS system, and will provide clearer guidance and direction to both families and providers regarding visitation.

No Data: DDS group home staff data largely absent from administration’s public COVID test reports

October 7, 2020 5 comments

Even though the Baker administration announced in August that they were requiring staff to be tested for COVID-19 in group homes for persons with developmental disabilities, it appears only a small portion of the results of those tests on staff are being made publicly available.

The administration’s Weekly State Facility Reports list numbers of state-operated group home and developmental center residents and staff who are currently COVID positive. But they do not contain any COVID testing data on what may be more than 25,000 staff working in the much larger network of provider-operated group homes.

Further, there is no information listed in the weekly reports on the numbers of deaths of staff working in any type of DDS setting. Data provided by DDS in June showed that anywhere from 3 to 15 staff members in group homes had died of COVID-19 as of the end of that month.

We created the chart below based on the administration’s online Weekly State Facility Reports from May 26 through the most recent report, dated September 29. (You can click on the chart to make it larger.)

The chart illustrates the data gaps, and points to some other problems with the way the administration reports the results of COVID testing in the Department of Developmental Services (DDS) system. In addition to the missing staff data, the positive test numbers are not cumulative, and there are no exact numbers given when there are less than 5 deaths or positive cases in any category in a given week.

We also have questions about the data on “residents recovered” from COVID. A note to the data states that the numbers “do not include all facility cases and recoveries over time.” As a result, it isn’t clear what portion of all recovered residents are included in the data.

As discussed below, the number listed in the weekly reports for residents having recovered from the virus in state-operated group homes — 146 — did not change from July 21 through September 29.

There is no similar data listed in the reports on recovered staff.

There are some 4,800 staff caring for some 1,400 residents in state-operated group homes and developmental centers run directly by DDS, according to the administration.

DDS has no figures on the total number of staff caring for the 7,800 residents in provider-run group homes around the state; but we are estimating that the number of such staff may be higher than 25,000.

EOHHS reports provide more limited data even for residents

The chart illustrates the gaps in staff data by including categories labeled “no data.”

Even with regard to residents, the Weekly State Facility Reports provide exact numbers only if more than 5 residents are positive or have died in a given week. As the chart shows, there are a number of entries that say <5, meaning the true numbers are anywhere from 1 to 4.

As a result, it can’t be determined in those instances exactly how many individuals were positive with COVID or died in a given week, in given settings.

For instance, it can’t be determined for the week of September 29 how many group home residents actually died of the virus. The data state only that the number was <5. It’s not clear why the numbers aren’t more exact. Among other problems, listing the data as a number range precludes adding numbers from different weeks together to obtain cumulative totals.

Data reporting changeover as of October 1

From April through September 30, DDS did provide us, upon written request, with total numbers of residents and staff testing positive in all group homes and developmental centers. DDS also provided exact numbers and provided cumulative testing data.

DDS has now referred us for testing numbers going forward to the Executive Office of Health and Human Services (EOHHS), which posts the Weekly State Facility Reports.

Since June 16, the Weekly State Facility Report numbers are for the current week only. Prior to that date, the reports did offer cumulative testing numbers, which are listed in red font in the chart above.

The changeover in data reporting from DDS to EOHHS coincides with a new testing system under which DDS and other human services providers must arrange for their own COVID testing.

I emailed Health and Human Services Secretary Mary Lou Sudders on Monday to ask whether EOHHS can provide us with more complete data, similar to the data that DDS provided.  I also emailed Helen Rush-Lloyd, records access officer for the Department of Public Health (DPH). I was told DPH actually produces the Weekly State Facility Reports.

Neither Sudders or Rush-Lloyd has responded to my emails.

No longer listing cumulative data for positive tests

As noted, the Weekly State Facility Report data on positive test results are no longer cumulative. The reports list the number of group home and developmental center residents who are currently positive each week.

While previous weekly reports are available online, it isn’t clear if cumulative positive testing totals can be gleaned from them. As noted below, it also isn’t clear whether the numbers of recovered residents are actually cumulative.

The week of June 16 may have  been the last Weekly State Facility Report listing clearly cumulative data. As of June 16, the report listed a cumulative total of 1,428 state and provider-operated group home residents as having tested positive.

That number, however, does not line up with our data from DDS. DDS at that time reported a cumulative total of 1,575 group home residents as having tested positive.

COVID recovery numbers didn’t change for state-operated group home residents

As noted above, it isn’t clear what the numbers listed in the Weekly State Facility Reports for recovered residents actually means, or whether the numbers are cumulative. The reports list the category as “Current Clients Recovered.”

A note at the bottom of each report states that the numbers listed for recovered residents “do not include all facility cases and recoveries over time.”

Recovered patients are further defined as having tested negative or having met symptom and time-based recovery guidelines issued by the Massachusetts DPH and federal Centers for Disease Control.

As the chart above shows, the number of state-operated group home residents listed as recovered remained at 146 from July 21 through the end of September. Prior to July, a cumulative total of 156 residents of those facilities were listed as having contracted COVID-19.

From June 15 on, as many as 24 additional state-operated group home residents, or as few as 6, contracted the virus, according to the data. It isn’t clear whether the 146 listed each week as having recovered represents the same group of residents, and whether no additional residents recovered from the virus after July 21.

We have similar questions about the number of residents listed as recovered in provider-operated group homes. While 1,187 residents of those facilities were listed as recovered in the June 23 Weekly State Facility Report, that number rose by only 52 — to 1,239 — as of September 29.

It isn’t clear to us whether only 52 additional residents recovered from the virus in the provider-run group homes in the three-month period after June 23. It is also unclear what the cumulative total was of those residents testing positive was during that same period of time.

We hope that EOHHS improves its public reporting of COVID testing results in the DDS system by eliminating the gaps in the data, making all the numbers exact, and providing cumulative data in addition to current data.

In not providing clear and complete reporting on the COVID crisis in the system, and in failing to respond to questions about the reporting, the administration loses a bit more of its credibility every day in that respect.

The state’s attorney general needs to do more than follow and grab COVID media headlines

September 27, 2020 6 comments

Massachusetts Attorney General Maura Healey made national headlines and newscasts with her announcement last week of criminal charges against two leaders of the Soldiers’ Home in Holyoke for allegedly mishandling a COVID-19 outbreak at the facility that led to the deaths of 76 veterans.

We are not second-guessing Healey’s decision to criminally prosecute the Soldiers’ Home superintendent and former medical director in this matter. Our questions and concerns are over the overall investigative goals, or lack thereof, that not only Healey, but Governor Baker and the Legislature have with respect to the COVID crisis in the state.

What happened at the Soldiers’ Home was certainly horrific and potentially a case of grossly negligent management. But the Soldiers’ Home wasn’t the only institutional residential setting in which large numbers of people were infected and have died of the virus.

Our focus has been on the nearly 4,000 staff and residents of residential facilities in the Department of Developmental Services (DDS) system who contracted COVID-19 since April, and the 110 residents and an undetermined number of staff who have died of it.

Yes, Governor Baker has developed what has appeared to be a thoughtful plan over the past several months for testing the general population in the state for the virus, and reopening businesses and other venues as infection rates have declined.

But some groups of people appear to have been overlooked in this process, and we think people with intellectual and developmental disabilities are among them.

We’ve written repeatedly about the treatment of clients in the DDS system with respect to the COVID crisis as if they were an afterthought. Until very recently, there appeared to be no coherent plan for testing the thousands of residents and staff in the system, and huge gaps still potentially remain in the testing program and public reporting of the results.

DDS staff, in particular, have not faced a testing requirement until this month, and even that requirement is rife with questions and a potential loophole. The administration was slow to get personal protective equipment to the residential DDS system, and it still isn’t clear whether the level of training and oversight of staffing and care in the system is adequate.

Does any of this concern Govern Baker or Attorney General Healey or the state’s legislative leaders? We’ve seen little or no evidence that it does.

One might argue that 110 deaths in the DDS system is a relatively low percentage of the system’s total population. But 110 deaths is 110 deaths too many. How many of those deaths might have been prevented had there been adequate testing and training of staff?

How does bringing charges against two officials who ran one residential facility in the state ensure that there will be improvements in the practices and procedures in all other congregate care facilities?

While criminal charges in the Soldiers’ Home case may be warranted, we would submit that criminal charges should be among the last actions taken by the attorney general in response to a public health crisis like this one. Those charges should come only after the AG has conducted an investigation of the overall response of the state’s congregate care institutions and policies and practices, both public and private.

Those comprehensive investigations are almost never done, and we strongly doubt one was done by Healey’s office. Governor Baker, himself, ordered an independent review focused solely on the Soldiers’ Home deaths, which resulted in a report in June that was widely covered by the media.

That report proved the rule that the investigations that are done are targeted to specific events and almost never offer insights into underlying problems that are usually much wider in scope.

And public officials and administrators react almost exclusively to the resulting media reports in the hope of generating headlines favorable to themselves. It’s no surprise that headline-making indictments have come out of the Soldiers’ Home case.

While those deaths certainly warranted major media coverage, the media have been singularly uninterested in similar problems in the DDS system. After some initial coverage of concerns we, in fact, raised early on about the administration’s inadequate efforts to protect DDS clients from the virus, there has been almost no media coverage from roughly May onwards.

All of this may explain Attorney General Healey’s overall lack of interest in the DDS system. More than a year ago, we contacted Healey’s office to raise concerns about the AG’s apparent lack of focus on abuse and neglect of persons with developmental and other disabilities. While we appreciate that staff from her office did agree to meet with us, we received no indications in response to our subsequent queries that anyone was following up on our concerns.

Given that Healey had, at the time, taken an active role in scrutinizing and penalizing operators of nursing homes that provided substandard care to elderly residents, we asked her office for records of similar fines, settlements or penalties levied against DDS providers from the previous five years. Her office was unable to come up with virtually any records of such actions.

Many in the political system have been celebrating the Soldiers’ Home indictments as a signal that the state is aggressively going after the people responsible for failing to prevent COVID infections and deaths in the commonwealth’s institutions. Unfortunately, we’re not seeing a lot to cheer about at this point.

DDS ordered to provide records on causes of death in system. But will we ever see those records?

September 24, 2020 6 comments

The state public records supervisor ordered the Department of Developmental Services (DDS) this week to provide records we have been seeking since early July on the numbers of DDS clients who have died since January and their causes of death.

It’s another win for us in our public records battles with several state agencies for COVID-related information. But these victories have had a hollow feeling lately because, as we’ve reported, these agencies have largely not been complying with the supervisor’s orders. We’re hoping this situation changes soon.

In this case, we have been trying to determine the percentage of total deaths in the DDS system that have been due to COVID-19.

DDS first denied the records in late July and then again in early September, arguing that the information is kept in each client’s “confidential client record,” and, as such, is exempt from disclosure under the Public Records Law. Secondly, DDS argued that it has not attempted to aggregate that data and is therefore not required to create such a record.

Public Records Supervisor Rebecca Murray essentially sided with us in our contention that both of DDS’s arguments for denying the records were flawed.

We argued that DDS’s claim that the information is exempt is based on a technicality that contradicts the spirit of the Public Records Law. The law exempts records that would disclose a client’s identity; but such a disclosure would not happen in this case.

Even though the cause of death is contained in a client’s confidential record, we are not seeking that full record and would not be able to determine any client’s identity based on an aggregate listing of causes of death.

In her September 22 decision, Murray wrote that, “The Public Records Law strongly favors disclosure by creating a presumption that all governmental records are public records.”  She added that:

…it appears that the Department (DDS) does possess cause of death information, although not in aggregated form. Where the Department can redact the remainder of the client records that contain this information, it is unclear how providing this information would require “creation of a new record” ….Therefore, I find that the Department has not met its burden in responding to this request.

Murray ordered DDS to provide us with records “consistent with this order, the Public Records Law and its Access Regulations, within 10 business days.”

Hopefully, DDS will comply with the order. But, as we have previously noted, the Executive Office of Health and Human Services (EOHHS), the Department of Public Health, and DDS do not appear to feel that they are compelled to comply with Murray’s orders.

EOHHS has yet to comply with an order Murray issued on July 24 to provide us with clarification whether the agency possesses internal emails on mandatory staff testing in the DDS system.  EOHHS has also not yet complied with an August 18 order to provide us with additional emails regarding public reporting of COVID results.

Finally, DPH has not complied with an order on August 10 to provide us with records on payments made to Fallon Ambulance Service, which has been conducting mobile testing for COVID-19 in the DDS system.

As I said, we’re hoping these agencies begin complying with the law. There are a few signs that that may be happening. I was told this morning by the public records supervisor’s office that EOHHS would have a response later today for us on the mandatory staff testing records. It would be their first response since July.

That would be good news. But the question remains: Will we ever see any of the actual records we’ve requested from EOHHS or any of these other agencies? I guess we’ll fully believe it when we see it.

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