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DDS group home providers have different options for providing COVID vaccinations

January 19, 2021 1 comment

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.

COVID vaccination new update: Program starting next week in DDS group homes

January 13, 2021 1 comment

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.

Confusion persists as administration remains mum on COVID vaccinations in the DDS system

January 11, 2021 Leave a comment

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.

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 5 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.

DDS seeks to remove mother as co-guardian of her son after she saves his life

November 12, 2020 45 comments

Cindy Alemesis’ son, Nicholas, nearly died in December 2018 after staff in his group home in Dracut failed to take him for a scheduled morning ultrasound appointment, which would have shown that his brain shunt was leaking spinal fluid.

Just hours after the scheduled time for the appointment, Cindy first noticed how ill Nick appeared.

Cindy was with Nick following an evening church service, and made sure he was taken to a hospital. There, doctors found that the shunt was leaking spinal fluid into his body, and that the fluid had begun to build up in his stomach. Cindy didn’t know at the time that the ultrasound appointment had been missed.

Nick got sepsis from the leaked fluid, and was in Mass. General Hospital for eight months, during which he underwent multiple brain operations and other procedures. Cindy was at his bedside for much of that time.

Nick, who is 28, has a mild intellectual disability, and was born with hydrocephalus, a condition in which there is excess spinal fluid in his brain. He has a shunt in his brain that drains the fluid.

Nick Alemesis and his mother, Cindy

Since Nick’s recovery and release from the hospital in July 2019, Cindy has regularly complained that staff in the group home, run by LifeLinks, a provider to the Department of Developmental Services (DDS), have continued to miss medical and dental appointments for him.

But rather than addressing those concerns, DDS is now moving to remove Cindy as her son’s co-guardian, stating only in a court document filed last month that she has made decisions that were not in Nick’s best interest. The DDS filing in Middlesex Probate Court does not provide any specifics as to what decisions those might have been.

Cindy said DDS has done little or nothing to address the concerns she has raised about Nick’s care in the group home.  She said problems, in addition to the missed appointments, include sharp restrictions placed on her contact with Nick for reasons that have not been explained to her.

Cindy said the other co-guardian for Nick, who is apparently paid by DDS, appears to live in Florida, and has been uninvolved in Nick’s care. Cindy sought unsuccessfully to remove that co-guardian last year in probate court.

It isn’t clear whether the current move by DDS to remove Cindy as co-guardian is in retaliation for her attempt to remove the other co-guardian. It is also unclear whether DDS wants to make that individual Nick’s sole guardian.

I emailed a request for comment on this matter on Tuesday (November 10) to DDS Commissioner Jane Ryder, and to Barbara Green Whitbeck, DDS assistant general counsel. Whitbeck signed the Department’s petition to the probate court to remove Cindy as co-guardian. Neither Ryder nor Whitbeck has yet responded to my request for comment.

Support from church pastor 

Keith Phemister is pastor of the Lighthouse Baptist Church in Hudson, NH, which Cindy, her husband, and Nick have attended for the past 20 years.

Phemister strongly supports Cindy’s remaining as Nick’s co-guardian, and said he is baffled by DDS’s claim that she hasn’t made decisions in his best interest.

Phemister said Cindy can be abrasive at times, and that he has spoken to her about it. But he maintains her abrasiveness is because she feels that her son is being mistreated, and that she sometimes will speak her mind without thinking about how others might react.

“I know she (Cindy) is fighting for her son,” Phemister said. “It’s possible they (DDS) see that as a negative, but she loves her son and is fighting for him, and they’re holding that against her.”

Phemister said that on the evening Nick got ill in December 2018, Nick had attended Wednesday church services with Cindy. The church has a van that picked Cindy up from her home in Lowell, and picked up Nick from his group home in Dracut, and took them to the church in Hudson, NH. After the service, Nick started feeling ill, and was sweating and vomiting on the van ride back to Dracut.

Phemister said Cindy was so concerned, she had them detour and take Nick to Lowell General Hospital. Nick was later transferred to Mass. General. Phemister said the medical staff apparently told Cindy that Nick would have died had he not been brought to the hospital that day.

Cindy at Nick’s bedside in the hospital

Doctor stipulates to missed ultrasound appointment

In a written statement, Zaheer Ahmed, a doctor of internal medicine based in Lowell, said he examined Nick on December 17, 2018, two days before Nick fell ill and was taken to Lowell General.

During the December 17 visit, Ahmed scheduled an ultrasound of Nick’s abdomen for two days later — December 19 at 10 a.m.

Ahmed’s statement added that “the patient and care worker were both informed of (the) appointment before leaving the office on that date.”  However, the doctor’s statement says Nick didn’t show up for the December 19 appointment, and the ultrasound had to be rescheduled for December 21.

However, by then it was too late. Nick fell ill during the church service in the evening of December 19. During the ride back in the van, Nick was first taken on Cindy’s insistence to Lowell General Hospital. He was transferred a few hours later to Mass. General.

A document from Mass. General shows Nick was admitted on December 20 with fever, nausea, vomiting, lethargy, and abdominal pain. That was the start of an eight-month stay in the hospital.

At Mass. General, Nick had 13 operations to remove and replace the shunt in his brain, and seven procedures on his throat due to an infection caused by his trach tube, Cindy said.

According to the Mass. General document, Nick also underwent a subsequent operation for a perforated bowel caused by a piece of the infected shunt.

DDS and provider apparently failed to report hospitalization

Given Dr. Ahmed’s written statement regarding the missed ultrasound appointment, the LifeLinks staff were knowledgeable and responsible for bringing Nick to the appointment, and failed to do so – a potentially negligent act that could well have cost him his life.

Cindy said she immediately reported those circumstances to officials at DDS. It appears, however, that neither the provider nor DDS reported the matter to the Disabled Persons Protection Commission (DPPC), as required by the DPPC’s enabling statute and regulations. As a result, DPPC never investigated the matter or authorized DDS to investigate it.

In response to a query from Cindy earlier this month, DPPC responded that it had received no complaint report involving Nick’s hospitalization until Cindy herself filed a complaint about it last month.

The DPPC’s statute and regulations state that “mandated reporters” must report any situation resulting in a serious physical injury if there is reasonable cause to believe it was due to abuse or neglect.

Missed appointments continue

Cindy said she has been frustrated that the group home staff continued to miss appointments for Nick, even after his release from the hospital in July 2019.

A written statement from Jonathan Moray, a doctor with New England Neurological Associates of Lawrence, stated, for instance, that Nick missed an appointment on November 27, 2019, just a few months after he got out of the hospital.

A written statement last year from Tufts Dental School states that they could not schedule any further dental appointments for Nick “due to lack of updated medical paperwork.” That paperwork is required to be updated yearly, and nothing was on file since 2017, the Tufts letter stated.

Cindy said Nick’s teeth are still damaged from a trach tube that was inserted during his hospitalization.

DPPC screens out recent complaint

Unable to get an adequate resolution to her concerns about the missed appointments, Cindy filed the complaint last month with DPPC. But the agency screened out that complaint as ineligible for an abuse investigation, and instead referred it to DDS for an “administrative review.”

The DPPC intake form states that Cindy’s complaint was screened out because Nick had not suffered a serious physical or emotional injury. However, that same DPPC intake report acknowledged that one of the alleged missed appointments had led to Nick’s hospitalization for eight months.

DDS attorney threatened to take away co-guardianship in 2019

Cindy said Barbara Green Whitbeck, the DDS assistant general counsel, first threatened to take away her co-guardianship of Nick last year, and falsely accused her of trying to improperly feed Nick while he was hospitalized.

Whitbeck has represented DDS in the ongoing probate court fight in which Cindy had sought to remove the DDS co-guardian. Cindy said that when she informed Whitbeck during a private meeting of her concerns about the other co-guardian and the alleged negligence of the provider, Whitbeck dismissed those concerns.

“She (Whitbeck) said the (LifeLinks) staff did nothing wrong,” Cindy said. “Then she accused me of feeding my son and keeping him sick in (Mass. General).” Cindy said she got up at that point to leave the meeting, and Whitbeck threatened her, saying if she left, she would lose her co-guardianship.

Cindy said the charge of improperly feeding Nick was untrue and “came out of left field.”

Cindy said that while she was at Nick’s bedside in the hospital, the nurses trained her in how to suction his trach tube and how to put his medication, which was crushed up in a type of pudding, into his G-tube. His trach had to be sanctioned every 20 minutes or so, she said.

Cindy feels Nick is continuing to be isolated in his group home

Cindy said Nick’s phone was recently taken away from him, and that he has had few social interactions since March. Before that, his church was his main source of social interaction.

Currently, Cindy’s contact with her son is restricted by the group home to once a week. Her phone contact with him is also apparently highly restricted. She was told in March that no in-house visits were permitted because of the COVID crisis, but said no one informed her that in-house visits were restored as of early October under revised DDS guidelines.

In an email on Oct. 8, Cindy complained to Nick’s service coordinator that the group home staff told her not to call Nick, and didn’t give her a reason for that. She said she sometimes goes for three to five days without hearing from him.

Cindy said those restrictions on contact have made it harder for her to keep track of the care Nick is receiving, and to monitor his medical needs. She said that when she called the house earlier this week to ask permission to visit her son, a staff member hung up on her.

Case fits a pattern

Unfortunately, this case fits a pattern we have seen in which DDS and sometimes providers themselves have taken a variety of punitive and retaliatory actions against family members and guardians when they are seen as troublesome or meddlesome in advocating for adequate care for their loved ones in the system.

Guardians, parents, and other family members can suddenly find their contact with their loved ones restricted or banned entirely, and their guardianship placed in jeopardy. They are frequently either ignored or threatened with punitive actions if they don’t agree to accept the providers’ decisions on care and services without complaint. (Examples of this are here, here, here, here, here, here, here, here, here, and here.)

Without an attorney, family members and guardians can find themselves badly outmatched and outgunned by DDS’s extensive legal resources, particularly in probate court. The system is entirely unfair and designed to bully families into submission.

It shouldn’t have to be this way. We strongly hope that Cindy prevails in her battle to keep her guardianship, and will do everything we can to help her. But it will likely be an uphill battle.

What you can do

We urge people to call DDS at 617-727-5608 and ask to leave a message with the commissioner in support of Cindy remaining as her son’s co-guardian.

Also, please call your local state legislators (you can find them here), particularly if you live in the Lowell and Dracut areas, and ask them to contact DDS on her behalf. And please share this post on Facebook and other social media.

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