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

October 7, 2020 5 comments

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

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

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

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

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

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

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

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

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

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

EOHHS reports provide more limited data even for residents

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

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

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

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

Data reporting changeover as of October 1

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

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

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

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

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

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

No longer listing cumulative data for positive tests

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

September 27, 2020 6 comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

September 24, 2020 6 comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Administration’s new COVID testing plan for DDS system may contain a staff loophole and reduce public reporting

September 21, 2020 Leave a comment

Questions linger over a change in the way COVID-19 testing is being done in the Department of Developmental Services (DDS) system, including whether the change contains a loophole for staff testing and whether it could mean less publicly reported data.

The change in testing policy was instituted last month by the Executive Office of Health and Human Services (EOHHS), which has taken charge of the testing program. It appears DDS and possibly other agencies under the EOHHS umbrella will have little or no involvement in managing the testing.

Baker administration officials are not answering many of our questions about the new testing policy, which is outlined in an EOHHS directive last month to all residential DDS providers. The directive requires the providers both to undertake their own COVID testing for the first time and to include all residential program staff in that testing requirement.

Under the EOHHS directive, residential providers must now engage their own testing providers and labs, and will be reimbursed by the state for the costs. The directive changes a policy in the DDS system under which a single company, Fallon Ambulance Service, has been providing mobile testing to group homes around the state.

While we support a portion of the new policy requiring that residential staff undergo “baseline testing,” a number of questions have not been answered:

  1. Will residents and staff actually undergo follow-up biweekly “surveillance” testing, or will an apparent loophole in the EOHHS policy prevent surveillance testing in many regions of the state?
  2. Will day program staff avoid a testing requirement altogether, under the EOHHS policy?
  3. Will the results of the staff testing be made public, and who will report those results?

The apparent testing loophole

While the EOHHS directive specifies that baseline testing for staff and residents in all DDS group homes and developmental centers be done by September 30, it is not clear whether biweekly retesting, or “surveillance testing,” will actually go into effect in all regions of the state.

The EOHHS directive establishes a “regional transmission threshold” in order to determine the need for surveillance testing. Each of five regions of the state is identified as either a “high transmission” or “low transmission” region for COVID-19.

High-transmission regions are those that have a weekly average transmission rate equal to or greater than 40 cases per 100,000 residents. Low-transmission regions are those that have a transmission rate less than 40 cases.

According to the directive, providers located in high-transmission regions must undertake the surveillance testing. However, providers in low-transmission regions are required only to do surveillance testing when there are individuals in their facilities who show symptoms of the virus.

The transmission rates in each region are published weekly by EOHHS. As of the most recent weekly report, dated September 16, only one of the state’s five regions met that 40-cases threshold. That was the northeast region, which had 41 new cases. The western region had a low of 15 cases, followed by the central region with 21 cases, the southeastern region with 23 cases, and the Boston region with 31 cases.

Thus, as of this month, only the northeast region currently meets the threshold of positive cases among residents that would apparently trigger the ongoing surveillance testing requirement.

This threshold requirement sounds to us like a loophole that at least currently avoids surveillance testing in most of the DDS system. DDS staff, in particular, will only need to be tested once in most regions of the state, and will not have to be retested unless the rate of infection rises significantly among the general population in the region.

It is not clear, however, that the rate of COVID infection in group homes and other DDS facilities is directly related to the rate of infection in the general population. Without regular retesting of staff, in particular, it will be difficult to identify possibly rising infection rates in the DDS system.

Day program staff left out of testing requirement

DDS staff are also left out of the new EOHHS testing policy in another respect. As we have reported, the EOHHS directive did not include staff working in day programs. It is unclear what the reason is for that omission or whether extending the directive to day programs is under consideration.

We expressed concern to DDS Commissioner Jane Ryder in an email on August 28 that a failure to include day program staff in the directive appears to leave a major hole in the testing program in the DDS system. Ryder has not responded to our message.

Community-based and other types of provider-run day programs were reopened in early August as data began to indicate declining rates of the viral infection in the state. But the administration acknowledges that a risk of infection remains in the day programs.

Although day programs have been reopened, some residential providers are not sending residents to them because of the COVID infection risk. At this time, we don’t actually know how many day programs are operating or how many people are attending them. But whatever that number is, there is apparently no requirement that staff in those programs be tested.

Public reporting requirements may be reduced

As noted, in requiring that DDS residential providers arrange on their own for COVID testing of residents and staff, EOHHS is ending the Fallon Ambulance Service mobile testing program.

While that mobile testing program has been ongoing, DDS has provided us, upon written request, with cumulative testing data for clients and staff. That data has also shown the rate of testing being done by Fallon. It is not clear that that same level of data will continue to be reported after September 30, in part, because it does not appear that DDS will have testing data after that date to report.

On September 16, DDS ombudsman Christopher Klaskin told us that from September 30 on, “providers are required to report progress directly to (EOHHS) for completion of baseline staff testing – so they (EOHHS) are collecting that data point moving forward.”

Klaskin also said that “updated numbers moving forward are only reflective of that data point and will not include surveillance testing.” He did not respond to my query as to whether this means that results of surveillance testing will not be reported publicly by EOHHS.

EOHHS weekly online testing data do not show results for provider staff 

Adding to our concern about the potential for reduced reporting of COVID test results is EOHHS’s ongoing policy of not publicly reporting the results of COVID tests done on provider staff.

While online EOHHS Weekly Facility Reports show the number of clients in DDS-funded group homes and developmental centers who are currently positive for the virus, the reports do not include the testing results of staff of group homes run by DDS corporate providers. For reasons that have never been explained to us, the EOHHS reports only provide results for testing of staff in the DDS’s much smaller network of state-run group homes.

As noted, DDS has provided us up to now with the results of provider staff tests.

As we have reported, top EOHHS administrators discussed proposals in June for reducing public reporting of COVID testing results in DDS and other congregate care facilities, including the reporting of staff testing results.

Agencies not complying with Public Records Law on mandatory staff testing records

In general, as we have reported, information about COVID testing in the DDS system has been difficult to get from the administration. We have been asking since May for internal emails and other records from EOHHS, DDS, and the Department of Public Health (DPH) on mandatory staff testing.

To date, we have received zero records from those agencies in response to our request.

On July 24, the state’s public records supervisor ordered EOHHS to clarify whether they possessed any records responsive to our request, and to respond to our request “as soon as practicable.” To date, we have received no communication from EOHHS.

In sum, the jury is still out, in our opinion, as to whether EOHHS has adopted a serious and effective COVID testing policy for the DDS system. As of now, we have substantial doubts that it has done so.

 

Direct care workers need more than an official state day and billboards in their honor

September 14, 2020 3 comments

Governor Baker and an employee union recently honored home care workers in Massachusetts with an official state day and billboards.

But we think those workers might appreciate better pay and health benefits even more.

Baker and the 1199SEIU health care worker union teamed up to declare “Home Care Day” on September 4. The SEIU also funded the placement of 13 billboards in Boston, Worcester, Springfield, and other cities to highlight minority home care workers.

Tim Foley, vice president of 1199SEIU, told the State House News Service he hoped the billboards will “let home care workers know they are valued by so many families across the commonwealth and push elected leaders to invest in the workforce.”

We agree that the governor and Legislature need to do more to narrow the enormous gap that exists between the wages of direct-care workers and the executive salaries of the primarily private providers that employ them.

In 2018, Baker did sign legislation to raise the minimum wage of direct-care and other workers to $15 an hour; but it won’t reach that amount until 2023. In 2017, the Legislature rejected efforts to raise direct-care wages to $15 as of that year, and rejected a bid last year to raise direct care wages to $20 per hour.

A bill (H.4171) that would similarly raise hourly direct care wages to $20 has been stuck in the Health Care Financing Committee since last November.

Yet, it’s not as if the governor and Legislature are reluctant to provide continually rising levels of funding to the providers themselves. It’s just that the provider executives have chosen not to pass much of that increase through to the direct-care workers. Instead, they have greatly boosted their own personal wealth.

We reported  in 2012 that direct-care workers working for corporate providers contracting with the Department of Developmental Services (DDS) had seen their wages stagnate and even decline in previous years while the executives running the corporate agencies were getting double-digit increases in their compensation.

Since 2012, the line item in the state budget for DDS-funded residential providers has increased by nearly 45 percent in inflation-adjusted terms, to over $1.5 billion in Fiscal 2020. That is according to the Massachusetts Budget and Policy Center’s online Budget Browser.

Yet, as State Auditor Suzanne Bump’s office reported last year, while that boost in state funding resulted in surplus revenues for the providers, those additional revenues led to only minimal increases in wages for direct-care workers.

Bump’s May 8, 2019 audit found that the average hourly direct-care wage was $11.92 in Fiscal 2010, and rose only to $14.76 as of Fiscal 2017. That’s an increase of only 24 percent over that eight-year period, an amount that only barely exceeded the yearly inflation rate.

Meanwhile, according to the audit, the increased state funding to the providers enabled them to amass a 237 percent increase in surplus operating revenues (total operating revenues over total operating expenses) during that same eight-year period. The increased state funding was at least partly intended to boost direct-care wages, but it “likely did not have any material effect on improving the financial well-being of these direct-care workers,” Bump’s audit stated.

In 2017, SEIU Local 509 in Massachusetts issued a report similarly asserting that increases in funding to human services providers enabled the providers to earn $51 million in surplus revenues. The union contended that the providers could and should have used the surplus revenues to boost direct-care wages.

Confirming our 2012 findings, the SEIU’s 2017 report stated that during the previous six years, the providers it surveyed paid out a total of $2.4 million in CEO raises. The SEIU report concluded that:

This all suggests that the amount of state funding is not at issue in the failure to pay a living wage to direct care staff, but rather, that the root of the problem is the manner in which the providers have chosen to spend their increased revenues absent specific conditions attached to the funding. (my emphasis)

So, as noted, it isn’t a matter of the providers not having the money. The governor and Legislature need to pass a bill such as H.4171, which would require providers to use up to 75 percent of their total state funding to boost direct-care worker salaries to at least $20 per hour.

In other words, if state-funded providers aren’t willing to pay a living wage to the workers they employ, then it’s time for the state to step in and require them to do so. If that were to happen, Governor Baker would have put some substance behind a declaration of a Direct-Care Worker Day in Massachusetts.

Baker administration appears to be ignoring state orders on releasing public records on COVID response in the DDS system

September 8, 2020 3 comments

We have been trying for months to get records from the Baker administration about its policies and practices for protecting people with developmental disabilities from COVID-19.

Not only have we largely been unsuccessful in prying what should be public information from three state agencies, but even Rebecca Murray, the state’s public records supervisor, has been unsuccessful in extracting that information on our behalf.

The public records supervisor heads a division within the office of Secretary of the Commonwealth Bill Galvin, which is charged with enforcing the state’s Public Records Law.

Since July, we have filed several appeals to Murray for records from the Executive Office of Health and Human Services (EOHHS) and the Departments of Developmental Services (DDS) and Public Health (DPH). Those agencies have either denied our requests for the records, given us contradictory indications as to whether they have the records, or simply failed to respond to our requests.

Murray has subsequently issued several orders to the agencies either to provide records to us or clarify whether those agencies have the records we’re seeking. But it appears these agencies either feel free to ignore Murray’s orders or to slow-walk their compliance as much as possible. Since the end of July, they have shown few if any signs of compliance.

It isn’t clear what Murray is going to do about it. Yet it is a basic tenet of democracy that government follow the Public Records Law.

At this point, we have four outstanding public records requests to the three agencies, and the agencies have failed to comply with Murray’s orders in at least three of those cases. In the fourth case, which involves our request for information on the causes of deaths in the DDS system since January, we believe the Department is misinterpreting the law in denying us that information.

In nearly all of these cases, it has been so many weeks or even months since we first asked for the records that fast-changing circumstances involving the COVID pandemic have made many, if not most, of the records we might receive out of date.

The following are our outstanding records requests, and what has transpired with them so far:

Records on mandatory testing of staff in the DDS system 

On May 26, we first requested internal emails and other records from EOHHS, DPH, and DDS regarding mandatory testing of staff in the DDS system for COVID-19. To date, more than three months later, we have not received any records from any of those agencies.

We first appealed to Murray on July 14 regarding EOHHS, which gave us contradictory responses as to whether it possesses emails responsive to our request. On July 24, Murray issued an order to EOHHS to clarify whether it does possess the emails. To date, more than a month after Murray’s order, we have received no response from EOHHS in compliance.

Meanwhile, given the amount of time since we first asked for those internal communications, the situation involving mandatory staff testing has changed. In mid-August, EOHHS issued a directive requiring testing of all staff.

Given the amount of time that has passed since our May 26 records request, it does not appear likely that the records — if we ever do receive them — would cover the period of time in which the administration made the decision to issue the mandatory testing directive. But if and when we file a new request for updated records, who knows if we will get those either.

As noted, we received conflicting indications from EOHHS and later DPH as to whether they possessed the emails we were seeking.

In early June, an EOHHS official responded to us only to say that our request was so broad, it would result in a voluminous number of emails, and the agency would have to bill us an undetermined amount to retrieve and evaluate the records for release. As a result, on June 9, we we offered, at EOHHS’s request, to narrow our request to emails solely among EOHHS Secretary Mary Lou Sudders and her executive team, and sent during a two-month time-frame from April through June.

However, more than a month after we made our offer, EOHHS stated that they now could find zero responsive emails to our narrowed request.

In her July 24 decision, Murray ordered EOHHS to clarify whether they possessed any records responsive to our request, and to respond to our request “as soon as practicable.” To date, as noted, we have received no communication from EOHHS.

On August 13, we also appealed to Murray for help in getting similar records from both DDS and DPH regarding mandatory staff testing.

DPH also had responded to us, on June 17, that they had identified 2,762 emails as being potentially responsive to our request, and that it would cost us $1,626 to provide them. On June 18, the next day, we similarly offered to narrow our request in order to avoid that large a charge for the documents. To date, more than two months later, we have not received a response to our offer from DPH.

We never received any response from DDS to our May 26 records request, other than a notice on June 9 that the Department needed an additional five days to provide a response. That response never came.

On September 2, Murray ordered both DPH and DDS to respond to us within 10 business days with either a response to our June 18 offer to narrow our request, in DPH’s case, or a response to our original May 26 request, in DDS’s case.

Request for contract documents concerning Fallon Ambulance Service for COVID-19 testing 

On June 16, we requested records from EOHHS concerning Fallon Ambulance Service’s contract to test for COVID-19 in the DDS system.

EOHHS responded a month later — on July 15 — with no records other than the contract itself. In response to a portion of our request, which was for records of state payments made to Fallon, EOHHS directed us to an online database maintained by the state comptroller. That database, however, did not clearly identify payments to the company.

On July 28, after fruitless efforts to get EOHHS to clarify its response, we appealed to Murray, who ordered EOHHS on August 10 to provide reasonable assistance to us in locating the payments to Fallon. To date, we have received no communication from EOHHS in compliance with that order.

Request for records relating to EOHHS Weekly State Facility reports on COVID-19 

On June 25, we requested documents from EOHHS, DPH, and DDS concerning changes made to the presentation of COVID-19 data in online Weekly State Facility reports. We wanted to find out whether top administration officials had discussed changes that were made in late June to limit the information contained in the public reports.

On July 16 and July 28, we appealed the non-responses of all three agencies to those records requests. DPH and DDS subsequently stated that they possessed no responsive documents.

EOHHS did produce documents on July 31 — which is the last time we heard from them — partially responding to our records request. But we reinstated our appeal on August 4, arguing that the EOHHS response was incomplete. The agency clearly appears to have additional records that they did not provide.

Based on the limited records we did receive from EOHHS, we reported that top officials of the agency had indeed discussed reducing the information contained in the weekly online reports.

On August 18, Murray issued a decision in our appeal, stating that it was unclear whether EOHHS does possess additional responsive records, and ordering the agency to clarify that matter to us, once again, “as soon as practicable.” To date, we have received no further communications from EOHHS.

Records on deaths in DDS system

On July 9, we requested records from DDS on causes of death regarding all residents of group homes and other residential facilities in the DDS system since January 1 of this year. We wanted to determine the percentage of total deaths that have been attributed to COVID-19.

On July 23, DDS denied our request, citing, among other statutes, an exemption to the Public Records Law for “medical files or information.” We appealed, arguing that DDS is interpreting the exemption in a broader manner than it was intended or plainly states. The exemption specifically states that it pertains to:

…personnel and medical files or information; also any other materials or data relating to a specifically named individual, the disclosure of which may constitute an unwarranted invasion of personal privacy; (my emphasis)

We did not ask for information that pertains to any named individuals or that could therefore possibly constitute an invasion of anyone’s privacy. We noted that DDS could satisfy our records request by providing aggregate information on the total number of people who have died according to various causes. DDS already does this with regard to the number of deaths from COVID-19.

Murray ordered DDS on August 10 to provide us with a response as to whether the Department could provide us with aggregate data. No answer was forthcoming from DDS until September 3, at which time DDS issued yet another denial.

This time, DDS argued that while the Department does have information on the causes of death of DDS clients, that information is kept in their “confidential client record.” As such, the Department reasserted its contention that the information is exempt from the Public Records Law.

DDS’s September 3 response also stated that the Department has not attempted to aggregate that data and is not required to create such a record, even for the relatively short six-month period for which we are seeking it.

In a response we sent this morning to Murray, we maintained that DDS’s first argument is based on a technicality that contradicts the spirit of the Public Records Law, which is to prevent the disclosure of a client’s identity. Such a disclosure would not happen in this case.  Even though the cause of death would come from a client’s confidential record, we are not seeking the record itself.

Secondly, while it is true that agencies are under no obligation under the Public Records Law to create new records, we believe aggregating data from existing records does not constitute creating a new record. The Department could choose to provide each cause of death as an individual record, with all other identifying information redacted, or could choose to list all causes of death in one separate record.

It’s hard to imagine that each of these three agencies has come to the conclusion independently that they will either ignore or stall as much as possible in complying with the Public Records Law. It seems the impetus for this has come from the top, or at least the top of EOHHS.

Sudders herself originally responded to our questions about the administration’s COVID strategies and responses, but then she stopped for some reason. Why stonewalling has become the administration’s strategy in midst of the COVID crisis is a question we find mind boggling.

DDS day programs appear to be left out of the staff testing requirement for COVID-19

August 31, 2020 5 comments

While it’s very good news, as we reported last week, that the Baker administration is finally requiring testing of staff for COVID-19 in group homes for people with intellectual and developmental disabilities, it appears the administration’s directive does not apply to staff working in day programs.

We have expressed our concern to Department of Developmental Services (DDS) Commissioner Jane Ryder that a failure to include day program staff in the directive appears to leave a major hole in the testing program in the DDS system as a whole.

Community-based and other types of provider-run day programs were reopened in early August in the wake of data showing declining rates of the viral infection in the state. But the administration acknowledges that a risk of infection remains in the day programs.

In July, the administration ordered day program providers to require guardians to sign a form releasing the providers from legal liability if persons with developmental disabilities contract COVID-19 in the reopened programs. In early August, Ryder implied that the state would change or eliminate the form. 

However, it is still not clear whether the form has been eliminated or changed, or whether forms that guardians have already signed remain in effect. Ryder hasn’t responded to questions we emailed to her on August 12, seeking clarification of her statements about the release form.

Day program staff not included in testing directive

As we reported last week, the Executive Office of Health and Human Services (EOHHS) issued a directive on August 14 that requires “baseline testing” and potentially biweekly retesting of all staff in the DDS residential system for COVID-19. The baseline testing must be done by September 15.

The directive was issued after months of criticism from COFAR and other advocates that the lack of mandatory staff testing was potentially putting thousands of residents of DDS group homes at risk. The directive defines staff as including all direct-care personnel and physicians, nurses, therapists, technicians, and all others who can potentially transmit the virus to residents.

The staff-testing directive, however, specifically applies to “group homes and residential treatment programs funded, operated, licensed” by DDS and other EOHHS departments. It does not refer to day programs to which thousands of group home residents are taken on a daily basis in normal times for skill-development, recreational and other social activities. At this time, we don’t actually know how many day programs are operating or how many people are attending them.

In an email sent on Friday (August 28) to Ryder, I asked whether mandatory testing of day program staff was being considered, and why day program staff were not included in the testing directive. Ryder has not yet responded to that query.

Administration recognizes a COVID risk in day programs

In the wake of data showing declining rates of COVID-19 infection in the DDS system, the administration gave the go-ahead in July to providers to reopen the day programs, which had been shut since March. At the same time, however, EOHHS required guardians to sign the release form, which states that those guardians:

 …acknowledge the contagious nature of COVID-19 and voluntarily assume the risk that you or your loved one may be exposed to or infected by COVID-19 by attending a (provider-run day) Program…

COFAR and a number of guardians raised concerns over the release form, maintaining that it appeared intended to shield providers from liability claims even when negligence is involved. At least two residential group home providers told family members and guardians in late July that they were either declining to send residents to the day programs or recommending that they not go until a COVID-19 vaccine is made available.

In an August 10 email to COFAR, Ryder maintained that the release form was “was intended to prompt a discussion of individual risk factors (in reopening the day programs),” and that it was “not (intended to) operate as an assumption of risk or release from liability.”

Ryder said the administration would revise “guidance on reopening the day programs” in order “to eliminate the reference to the acknowledgment of risk form.” She didn’t explain the change further. But as of today (August 31), the guidance, which is dated July 2, had not been updated.

As noted, we’re happy to see that the administration has taken a major step to address the risks of infection in group homes by issuing a directive regarding staff testing in those facilities. But in not including day programs in that directive, the administration has failed to address a major source of that infection risk.

It’s akin to locking the front door against intruders who mean to do you harm, but leaving the back door wide open.

We hope this isn’t a case of a reluctance to spend the money. But even if it is, whatever the cost of implementing a staff testing requirement in day programs might be, it would likely be far less than the cost of implementing that requirement in the residential system. More importantly, it will potentially save lives.

Baker administration finally requiring DDS providers to test all staff for COVID-19

August 27, 2020 5 comments

In the wake of months of criticism for failing to make testing of staff in group homes mandatory, the Baker administration has issued a directive that requires “baseline testing” and potentially biweekly retesting of all staff in the Department of Developmental Services (DDS) residential system for COVID-19.

The baseline testing must be done by September 15. It’s not clear whether biweekly retesting, or “surveillance testing,” of staff throughout the system will actually go into effect. Under the directive, none of the state’s five Emergency Medical Services (EMS) regions currently meets a threshold of positive cases among residents that would trigger the ongoing surveillance testing requirement.

The directive from the Executive Office of Health and Human Services (EOHHS) defines staff as including all direct-care personnel and physicians, nurses, therapists, technicians, and all others who can potentially transmit the virus to residents.

The directive is dated August 14, just a few days after COFAR reported that even the administration of Gov. Ron DeSantis in Florida had begun requiring testing of staff in group homes in that state.

Based on a FAQ document accompanying the directive, it appears the Baker administration in Massachusetts has abandoned its mobile testing program with Fallon Ambulance Service, which apparently never achieved the expected testing rate. The residential providers must now engage their own testing providers and labs and testing supplies, and will be reimbursed by the state for the costs.

As of August 11, Fallon Ambulance had tested 21,600 residents and staff in the DDS system since the company began the mobile testing effort on April 10.  But the company’s testing rate had slowed to less than 100 tests a day since mid-June, according to DDS data. Of the total individuals tested, some 2,000 staff and 1,700 residents had tested positive for the virus since early April.

Based on the DDS data, more than 800 residents and an undetermined number of staff have still not been tested for the virus.

Prior to the latest directive, DDS did not appear to have a coherent testing or retesting policy. Not only were staff not required to be tested, but there was no clear retesting policy even for residents.

Under the new guidance, testing of group home residents will actually remain voluntary on the part of guardians. However, testing will be required of all residents in a group home if there is at least one positive case in the residence.

Staff tests done on or after August 1 can count toward the baseline testing requirement, according to the directive. Staff tested prior to August 1 must be retested for the baseline requirement. There is apparently no testing requirement for staff that previously tested positive for COVID-19 unless they develop new symptoms.

Given that all EMS Regions of the state are currently well under the positive incidence threshold of 40 per 100,000 residents, the directive only appears to require surveillance testing of staff  in group homes if a positive case of COVID-19 is identified in a residence during the baseline testing or at any other time.

DDS provider seeks assistance in testing from Marlborough Hospital

In the wake of the DDS directive, at least one DDS provider sought supplies last week from Marlborough Hospital to test 75 staff and 42 residents as of the September 15 deadline, according to an email forwarded to COFAR.

In response to the provider, a Marlborough Hospital administrator stated that the hospital has “a process already set up” with the Broad Institute in Cambridge for testing supplies, analysis and results reporting. “We will make it as easy as possible for you,” the administrator wrote.

The DDS provider stated that the actual testing would be done by RN consultants who work for the provider part-time.

The Broad Institute, which is affiliated with MIT and Harvard University, states on its website that it has been working since March with the state to process COVID-19 test samples from patients across New England. The website states that tests take approximately 12 hours to complete “as teams at the testing center apply additional automation.”

The new EOHHS testing directive and policy are necessary steps

We are glad to see that the Baker administration has finally recognized both the need for mandatory testing of staff in the DDS residential system and for a clear testing and retesting policy for the system. Up to now, the lack of both of those things has put the thousands of residents and staff in the system at risk.

A coherent and workable testing policy is essential, particularly if a second wave of the virus were to hit the state before a vaccine is made available.

Why the media won’t cover issues of concern to people with developmental disabilities

August 24, 2020 26 comments

Whether it’s due to “cancel culture” or a misguided ideology that the largely privatized system of care in society is functioning perfectly for people with intellectual and other developmental disabilities, the mainstream media these days just don’t seem interested in reporting about the system.

For a while now, we’ve been debating why it is so difficult to get media coverage in Massachusetts, in particular, of issues of concern to this group of people and their families and guardians.

A letter sent to the New York Times may provide one answer. In the August 20 letter, 75 organizations and leaders in the disability community critique that newspaper’s apparent lack of interest in covering “serious issues facing those with significant intellectual and developmental disabilities.”

The Times has apparently not yet published the letter, which is sponsored by the nonprofit National Council on Severe Autism (NCSA).

The letter points out that the Times, while recently honoring the 30th anniversary of the signing of the Americans with Disabilities Act (ADA), failed to include virtually any mention of persons with intellectual or other developmental disabilities. Yet the paper published over two dozen articles over the past few weeks about people with a wide range of other, non-cognitive disabilities.

As the NCSA’s letter to the Times notes, “the full story” in honoring the ADA would include those people with profound intellectual and developmental disabilities. But in doing so, the Times would have to acknowledge that this group of people do not have “the autonomous decision-making, independent living, and competitive, minimum-wage employment that are the cornerstones of the Disability Rights movement.”

The letter ties the Times’ disregard of the developmentally disabled to “cancel culture.” The letter states:

It is ironic that the Times has excluded the most disabled from its ADA coverage exactly as a debate about “cancel culture” has embroiled this newspaper and others. Severe intellectual and developmental disability should be a bipartisan issue — we, the undersigned, represent the broad range of the political spectrum. But because our stories don’t fit the progressive left’s disability narrative, they have been effectively cancelled — exactly by those who claim to care most about this vulnerable population.

We think the disregard of the developmentally disabled is evident in the mainstream media as a whole. The media buy into an ideology promoted by much of the disability advocacy community that no one, no matter how low their measured cognitive functioning may be, has limits on what they can achieve in the community system.

The problem is that this is an absurd position, and it leads to basic contradictions between the ideology and reality. People with intellectual disabilities do have limits on their ability to function in society. Rather than confront that contradiction, the media appear to have chosen to ignore people with cognitive disabilities altogether.

When we raise issues about the need for institutional care or sheltered workshops for those with intellectual disabilities, the media in Massachusetts don’t want to hear about it. It doesn’t fit the narrative that there is no one who is incapable of functioning perfectly in the community and working in mainstream jobs.

We recently reported that the Baker administration discussed reducing public reporting of data on testing of individuals and staff in DDS-funded group homes for COVID-19. Although we tried to bring our concerns over that issue to the attention of the mainstream media in Massachusetts, no media outlet has run any articles about it.

With only the occasional exception, the mainstream media in Massachusetts do no more than scattershot reporting even on the tragic and ongoing problem of abuse and neglect in the DDS system.

Community-first ideology pushed by successive administrations and corporate providers

Perhaps not coincidentally, the ideological position that the community system of care is working perfectly for everyone fits with a decades-long push by successive administrations in Massachusetts and corporate providers for more privatization of the DDS system. According to the ideology, clients in privatized, community-based residences are completely integrated with their communities and can reach their full potential there, unlimited by institutional constraints.

But while the community-based system has meant more state-funded contracts for providers and skyrocketing pay for its corporate executives, the system has largely failed to integrate its clients, and is beset by a bottom-line mentality that provides low pay, training, and supervision of direct-care staff.

Systematic reporting on inadequacies in care in the privatized system, or on a lack of adequate testing in that system for COVID-19, is not desired by corporate, state-funded providers.

Absurd position that autism is “perfect”

The letter to the Times pointedly criticizes an essay that the newspaper published in July that illustrates the ideology driving media coverage today. The essay by writer Madeleine Ryan, the mother of an autistic child, is titled “Dear Parents: Your Child with Autism is Perfect.”

In it, Ryan stated, “Your child might be verbal, nonverbal, aggressive, passive, introverted or extroverted. It doesn’t matter.” She added, “Your child is perfect. Be skeptical of what doctors, teachers, family members or friends say to the contrary.”

The letter to the Times includes a response to Ryan’s piece by Amy Lutz, founding board member of the NCSA and parent of a severely autistic son:

[Jonah] will never go to college, hold a job, see the world, or have a romantic relationship. He will always require round-the-clock supervision, because he has no safety awareness: he doesn’t look before crossing the street, despite years of instruction; and in one terrifying moment, he tried to jump off a cruise ship because he wanted to swim in the ocean… Jonah’s experience is just as important…and must not be elided from the narrative in favor of some kind of fantasy autism nirvana.

The letter further quotes Lee Elizabeth Wachtel, Medical Director of the Neurobehavioral Unit at the Kennedy Krieger Institute and an Associate Professor of Psychiatry at the Johns Hopkins School of Medicine:

When an autistic child has permanently blinded himself from self-injury, broken his teacher’s arm, or swallowed multiple toothbrushes and required emergency surgery, there is nothing perfect or magnificent about it, and it must be remedied.

Warning in the Olmstead decision

The letter to the Times notes a warning by Justice Anthony Kennedy in the Olmstead v. L.C. U.S. Supreme Court decision, which cleared the way for expanded privatization of care of the developmentally disabled. In a concurring opinion to the Olmstead decision, Kennedy wrote that:

It would be unreasonable, it would be a tragic event, then, were the (ADA) to be interpreted so that States had some incentive…to drive those in need of medical care and treatment out of appropriate (institutional) care and into settings with too little assistance and supervision.

Unfortunately, that is exactly what the ADA and the Olmstead decision itself have been interpreted by the media and many advocates as allowing.

Both the ADA and Olmstead are being used as covers for the real attitude toward the developmentally disabled on the part of the media and so many others in positions of power — they just don’t care.

Baker administration backtracking on COVID liability release forms for DDS-funded day programs

August 18, 2020 8 comments

Facing criticism, the Baker administration appears to be backtracking on a requirement that guardians sign a form releasing providers from legal liability if persons with developmental disabilities contract COVID-19 in newly reopening, state-funded day programs.

It is not clear whether the forms will be eliminated entirely, however, or just changed; or whether forms that guardians have already signed will remain in effect.

Department of Developmental Services Commissioner Jane Ryder emailed COFAR last week, saying the administration will “revise guidance” on reopening the day programs “to eliminate the reference to the acknowledgment of risk form.” She added that the Department “will communicate this to its provider community.”

Ryder didn’t explain the change further.

Executive Office of Health and Human Services (EOHHS) guidance on reopening the day programs, dated July 2, does not actually appear to refer to an “acknowledgment of risk form.” As a result, it isn’t clear whether EOHHS and DDS are actually eliminating the form or revising it in some way.

In her August 10 email to COFAR, Ryder maintained that the release form was “was intended to prompt a discussion of individual risk factors (in reopening the day programs), not operate as an assumption of risk or release from liability” (emphasis in the original).

On August 12, I emailed Ryder, seeking clarification of her statements, but she has not responded.

In the wake of data showing declining rates of COVID-19 infection in the DDS system, the administration gave the go-ahead last month to providers to reopen day programs that had been shut since March. At the same time, however, EOHHS has required guardians to sign the release form, which states that those guardians:

 …acknowledge the contagious nature of COVID-19 and voluntarily assume the risk that you or your loved one may be exposed to or infected by COVID-19 by attending a (provider-run day) Program…

The form adds that the guardian “understands…that this risk may result from the actions, omissions or negligence by you or your loved one, any (provider) employee, and/or other clients at the program.”

COFAR and a number of guardians raised concerns over the release form, maintaining that it appears intended to shield providers from liability claims even when negligence is involved. At least two residential group home providers told COFAR last month they were either declining to send residents to the day programs or recommending that they not go until a COVID-19 vaccine is found.

EOHHS guidance doesn’t appear to refer to a release form

Although Ryder stated that EOHHS plans to eliminate a reference in its day program reopening guidance to the “acknowledgement of risk form,” the guidance appears to refer instead to a “Risk/Benefit Discussion Tool,” and does not appear to state that guardians must sign it.

The guidance states that day program providers must:

Provide all participants/caregivers/guardians with the Risk/Benefit Discussion Tool. After identifying participants who wish to return to the program in-person, providers should discuss the Tool with all participants/caregivers/guardians prior to their in-person return to the program. The provider must consult with them to determine if the benefits of the participant returning to the program outweigh the risks (my emphasis).

Among the additional questions that we and other advocacy organizations have are what the impact has been on clients whose guardians have declined to sign the release form. In an interview with COFAR when the release forms were first issued in late July, one day program provider said that in those cases, day program services would be “provided remotely.”

However, a number of family members and guardians maintain that it is not possible to provide day program services remotely or online. They contend that families are being forced to choose between waiving their right to sue providers that fail to protect their loved ones from COVID-19 or depriving their loved ones of all day program activities.

Is the administration now saying that families and guardians will be able to send loved ones to day programs without signing away those rights?  As is so often the case with this administration when it comes to COVID-19, we’re left with more questions than answers.

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