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State data appear to show COVID has been the leading cause of death this year in the DDS system
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
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
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 accused Cindy at the time of trying to improperly feed Nick while he was hospitalized. Cindy denied that she ever fed Nick improperly.
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.
Administration now reporting human services staff COVID data, but not specifically for DDS
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.
COFAR blog 