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

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

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.

  1. mj
    December 5, 2020 at 8:55 am

    The Mass.gov site included age criteria with the covid reporting – is the age criteria available for DDS clients and if so could you include it?

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    • December 5, 2020 at 10:11 am

      mj, There is no breakdown by age in the data that the administration releases for DDS clients. The data on clients are broken down only by type of residential setting, i.e., state-operated or provider-operated group home, or developmental center.

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