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