Administration now reporting human services staff COVID data, but not specifically for DDS

November 9, 2020 Leave a comment

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.

Questions surround supervision of DDS client with violent history

October 26, 2020 7 comments

Anthony Remillard, an intellectually disabled man who fatally assaulted another man at the former Templeton Developmental Center in 2013, has been released from prison to a group home amid lingering questions about his supervision.

Dennis Perry, who was also intellectually disabled, died in the sudden and unprovoked attack in which Remillard shoved him against the side of a boiler in the dairy barn of the former facility.

Nancy Perry Mias, Dennis Perry’s sister, told us in September that she had been notified that Remillard, who was convicted of the crime and served seven years in prison, has been placed in a group home funded by the Department of Developmental Services (DDS).

Nancy said her concern is for the residents at the group home, as Remillard obviously has violent tendencies and probably didn’t get the help he needs while in prison. “I do have sympathy for this man,” she wrote to us in an email, “but I just feel as if the other families at the group home could be blindsided as we were, when we found out his history.”

In response to a Public Records Law request we sent to DDS in September, the Department responded that it does not have specific policies to alert the police, families, the community, or other residents when people with violent or criminal tendencies are placed in group homes.

DDS does provide special staff training, known as Crisis Prevention, Response and Restraint (CPRR), in group homes that house persons with potentially violent behaviors, an official stated. But it is not clear whether the group home to which Remillard has been admitted has implemented the CPRR curriculum, as specified in DDS regulations.

We’ve blogged about this case a number of times, also questioning the lack of supervision of Remillard at Templeton. We’ve also questioned whether it was appropriate to place him in prison where he wasn’t likely to get treatment, but would possibly be exposed to even more violence.

While Templeton was a functioning Intermediate Care Facility (ICF), it housed a number of clients with violent behaviors. But Remillard was a resident there after the facility was targeted for closure and was being phased down. Templeton was closed in 2015.

Although an internal DDS investigation of Perry’s murder cleared the Templeton staff of any omissions of care, we raised questions about the lack of thoroughness of the DDS report and the fact that the Department was essentially investigating itself in the matter.

In September, after learning of Remillard’s release from prison, we filed the public records request to determine what policies DDS has to protect other residents and the community when potentially violent residents are placed in DDS facilities. We asked, among other things, for any policies to alert the police and other residents and guardians and members of the community to the criminal backgrounds of clients in group homes.

DDS stated that it doesn’t have any policies of its own on alerting family members or the police in those cases. The DDS response stated only that the Department “supports” clients in following laws requiring them to register as sex offenders or to report to law enforcement or probation.

The only thing DDS stated that it has specifically done to ensure the safety of clients in these cases is to have developed the CPRR training program for staff of facilities with residents who have violent behaviors. As part of the their response to us, DDS included an “approved CPRR” workbook, dated 2017 and titled, “Proactive Approaches to Behavioral Challenges.”

The focus of the workbook is on “de-escalation and prevention of challenging behaviors.” The document describes a 20-hour training curriculum, and states that staff in group homes with potentially violent residents receive 1-year certifications in the use of “least restrictive techniques” and in the use of restraints as a last resort.

The workbook discusses the importance of providing reassurance and support to residents who exhibit “challenging behavior.” It states that many people who become violent do so out of feelings of powerlessness and vulnerability. The workbook suggests that “helping this person feel stronger and safer is a major means of reducing the probability of aggression.”

The workbook also states that most people exhibit “cues” or warning signs of aggression, and that “knowledge of these and their typical order of occurrence is a key to having a positive outcome to the situation.”

The workbook then lists several handholds and other techniques as “a last resort” to control physically aggressive individuals who endanger themselves, staff, or others. The techniques are presented in a sequence of least restrictive actions to most restrictive.

We assume, or hope, that Remillard has been sent to a group home that provides that training. We have no way, however, of evaluating the quality of the training described.

Ultimately, a single training curriculum is probably not sufficient to ensure the proper supervision of potentially violent individuals in the DDS system, and to keep other residents and the community safe.

This case is yet another reason to question the state’s longstanding policy of closing highly supervised ICF-level facilities such as Templeton, and then privatizing those functions.

But those types of questions have not been raised in recent years by the Legislature or successive administrations about either this case or any number of other abuse and neglect cases that afflict the DDS system with tragic regularity. The Legislature’s Children, Families, and Persons with Disabilities Committee has blown opportunity after opportunity to examine these systemic problems.

The Committee is a symbol of legislative failure in this regard, but it is hardly alone in that. The state Attorney General’s Office has similarly failed to take action to protect persons with developmental disabilities.

Nancy Perry Mias and other members of her family initially sought help from members of the state’s congressional delegation in obtaining an independent investigation of the DDS system in the immediate aftermath of Dennis Perry’s killing. They met with the staff of U.S. Senator Elizabeth Warren and with Representative Jim McGovern himself.

They all promised to look into the matter, Nancy said, “but we never heard a word back from them.” She said McGovern even said at the time that, “You certainly deserve an apology.” But, she said, the family never got one.

Baker’s revised budget for the current year would cut funding for day programs, increase funding for implementing ‘Nicky’s Law’

October 20, 2020 4 comments

Governor Charlie Baker last week proposed a revised state budget for the current fiscal year in light of the COVID crisis that would boost funding for some programs for persons with developmental disabilities, but would sharply cut day program funding.

The community-based day program cut reflects the impact of the COVID pandemic on in-person programs, according to a statement from the Department of Developmental Services (DDS). The resulting changeover to virtual programs on platforms such as Zoom has not been welcomed by some families and guardians who say the quality of in-person programs cannot be replicated on virtual platforms.

Baker’s $45.5 billion state budget does contain a proposed increase of $780,000 over his original plan in January in order to fund the implementation of “Nicky’s Law.” The new law would create a registry of names of caregivers in the DDS system who have had abuse cases substantiated against them.

It isn’t clear, however, that Baker’s budget plans will be approved by the Legislature. The governor’s revised budget proposes increases in overall state spending beyond what he proposed in January despite the projected loss of $3.6 billion in state tax revenues due to the pandemic.

Overall, the impact of the governor’s revised budget on programs and services funded by DDS appears mixed. Also, while Baker’s budget would boost Medicaid funding by  $834 million, it isn’t clear how that would affect DDS programs.

Day program funding would be cut

As noted, the news isn’t good in Baker’s revised budget for the provider-based line item for community-based day programs (5920-2015). The budget proposes a cut of $22.4 million, or 9.2%, in that line item when adjusted for inflation.

Baker had originally proposed a 6% increase in the day program line item in January.

DDS Ombudsman Chris Klaskin issued a statement from the Department that appears to indicate that a significant number of DDS clients aren’t attending day programs in light of the pandemic:

The proposed funding level incorporates revisions to (day) program forecasts as a result of DDS provider agency closures, reduced demand for services, and capacity requirements to maintain physical distancing in transportation and congregate settings advised by the Centers for Disease Control and Prevention (CDC).

Over the course of COVID-19 pandemic, DDS and its agency providers have worked in partnership to accelerate and incentivize alternative day programming in virtual and remote settings (i.e. Zoom classes) to supplement in-person services in the interim.

Some families have indicated to us that Zoom-based activities don’t work well with their loved ones who are DDS clients. At the same time, those families do not want to expose their loved ones to possible COVID infection in in-person programs.

We have noted that while staff working in residential DDS programs are now required to be tested for COVID-19, there still is apparently no such requirement for staff in day programs.

I sent a follow-up request to Klaskin today for information on the number of day program agencies that have closed, and the amount of the drop-off in demand for the programs.

Transportation funding would be boosted

In addition to the increased funding for the implementation of Nicky’s Law, Baker’s revised budget proposes a $3.5 million, or 11.7%, increase in the DDS transportation line item (5911-2000). It’s not clear why that provider-based line item would be increased by such a large percentage at the same time that the day program line item is being cut.

Mixed news for provider-run group homes

It appears the largest DDS line item — provider-operated group homes (5920-2000) — would get a very modest increase from Fiscal 2020 under the governor’s proposal. It’s actually a small cut of 0.33% when adjusted for inflation.

However, despite that apparent slow-down in funding this year, the provider-run group home line item will have been boosted since Fiscal 2012 by almost $423 million, or 49%, to $1.28 billion, if Baker’s proposal is adopted.

We have frequently noted that overall, the Legislature and successive administrations have steadily increased funding for privatized DDS-funded functions while either cutting or providing minimal increases in funding for state-run services.

Also, the governor proposed what appears to be a big increase in the Chapter 257 Reserve Fund (1599-6903), which goes to the residential providers in the form of rate increases. Baker would increase that line item by $119 million to $160 million. It isn’t clear, though, that the entire increase would take effect in the current fiscal year, which would be half over by the time the governor’s budget were to go into effect.

State-run developmental center funding cut as usual

Funding for the two remaining state-run developmental centers (5930-1000) would be cut as usual. Baker’s revised budget would cut the line item by $1.7 million, or 1.6%, when adjusted for inflation. That line item will have been cut  by more than $70 million since Fiscal 2012. Since then, four of six remaining centers have been closed.

Under Baker’s revised budget, the relatively small state-operated group home line item (5920-2010) would get a modest increase of $3.86 million this year, or 1.7%, when adjusted for inflation.

Also, the DDS administration line item (5911-1003) would get a proportionally larger increase of $4.5 million, or 6%. At least some of that funding is for DDS service coordinators, who manage and oversee services to thousands of DDS clients.

Funding increased to implement Nicky’s Law

One piece of potential good news is that the governor’s revised budget would boost funding to the Disabled Persons Protection Commission (DPPC) by $909,600, or 18.6%. That is $781,000 more than the 2.6% increase that Baker proposed in January for the DPPC.

As noted, the additional funding is intended to implement Nicky’s Law. That funding would enable the administration to avoid a lengthy delay in implementing the long-sought legislative initiative to prevent abusive caretakers from continuing to work in the system.

A member of the staff of state Representative Kay Khan, House Chair of the Legislature’s Children, Families, and Persons with Disabilities Committee, said the additional $910,000 for the DPPC is a pro-rated amount. It is based on the DPPC’s original Fiscal 2021 request for $1.2 million to establish the registry.

Andrew Levrault, DPPC assistant general counsel, said the agency anticipates hiring additional investigatory and legal staff, in part, to defend the agency in legal appeals of the placement of individuals on the registry. He said more than 700 provider agencies are expected to access the registry each year to conduct checks on thousands of prospective employees.  In addition to the investigative and legal staff, the DPPC “needs to substantially expand its information technology infrastructure” to meet the registry access needs of the providers.

As usual, the budget process raises many concerns about the near-term and long-term future of care for those in the DDS system; and answers are often hard to come by. The COVID crisis is vastly complicating an already complicated process.

Confirming our concerns, the Globe reports the administration is withholding COVID testing info

October 13, 2020 3 comments

The Boston Globe has recently been reporting that the Baker administration is withholding COVID-19 testing information from the public regarding nursing homes and other congregate care facilities.

Unfortunately, the Globe has repeatedly failed to mention that these “other congregate care facilities” include group homes and developmental centers in the Department of Developmental Services (DDS) system.

But a Globe editorial on Monday, (October 12) confirms our own reporting about the lack of public information from the Baker administration about COVID testing.

As the editorial stated:

…it’s worrisome that the Baker administration has provided only partial access to important COVID infection data in nursing homes and other long-term care facilities, even after the governor signed a law to enhance data reporting.

We have been posting for months about this issue as it relates to the DDS system. Our latest post on October 7 discloses that the administration’s online Weekly State Facility reports do not contain any COVID testing data on what may be more than 25,000 staff working in provider-operated group homes.

Further, as we reported, 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.

In addition to the missing staff data in the weekly reports, the positive test numbers for residents of DDS facilities 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.

Globe finds similar lack of data

With regard to nursing homes, the Globe has found many of the same information problems that we have disclosed with regard to DDS. The Globe reported last month that the administration is providing ranges of numbers rather than exact numbers on nursing home residents testing positive; and the newspaper said there is no cumulative testing data in the administration’s reporting on certain assisted living facilities.

MassLive reported on October 1 that no data is published by the administration, as required by a new public reporting law, on whether people who tested positive for COVID-19 have a disability.

Administration strategy to withhold COVID information

Given our findings and the reporting by the Globe and MassLive, it appears withholding COVID-related information is a deliberate strategy by the administration.

In early August, we reported that internal emails in June among the Baker administration’s top human services administrators revealed an apparent consensus to reduce public reporting of COVID-19 test results in congregate care facilities.

That consensus appears to have led to decisions to stop publicly reporting cumulative COVID testing data, and not to report test data on DDS provider staff working in group homes. For reasons that are unclear to us, the administration publicly reports only the number of staff testing positive in state-run group homes.

In one email, a senior manager at MassHealth appears to have wanted to “sunset” congregate care reporting in general. That was apparently just as Governor Baker was signing legislation into law that would increase reporting requirements about COVID-19 infection rates in congregate care facilities.

Lack of compliance with Public Records Law

It’s not clear whether the Globe or any other state media outlet followed up on our reporting on those internal emails.

However, the Globe did file its own public records requests in June for internal emails on COVID testing; and, like us, they’ve gotten little information. The Monday editorial stated that the Executive Office of Health and Human Services (EOHHS) was not complying with orders from the Public Records Supervisor to release the records to the Globe.

We have also reported that the administration has not complied with orders by the Public Records Supervisor to provide us with records or responses to numerous public records requests regarding COVID testing in the DDS system.

Meanwhile, our repeated requests over the past six months to Health and Human Services Secretary Mary Lou Sudders for information about the administration’s response to the virus have all been ignored.

Globe calls for accountability, but the newspaper itself has a blind spot

In its editorial, the Globe gave Governor Baker credit for bringing the pandemic “more or less under control in the state.” But the newspaper maintained that, “we can’t afford any more blind spots. The public needs to keep a close eye on the trends — and hold the state accountable when required.”

We agree that the administration’s lack of adequate public reporting on the COVID crisis shows it is failing to hold itself accountable for its response to the crisis. We hope that changes.

Yet the Globe and the rest of the media in Massachusetts have their own blind spot in that they appear to be largely uninterested in issues facing people with intellectual and developmental disabilities in the state.

We hope that the administration finally ends its circle-the-wagons approach when it comes to providing information and relevant data about the COVID crisis.

At the same time, we hope both the administration and the media will stop treating people in the DDS system as an afterthought at best, particularly with regard to the pandemic.

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.

Setting the record straight about Ruth Bader Ginsburg’s historic contribution to the rights of the disabled

September 30, 2020 6 comments

As the nation celebrates the life and judicial legacy of the late U.S. Supreme Court Justice Ruth Bader Ginsburg, we would like to recognize and set the record straight about her major contribution in one particularly vital case to the rights of persons with cognitive disabilities.

Ginsburg wrote the majority opinion in Olmstead v. L.C., which has been characterized as the most important civil rights decision for people with disabilities in our country’s history. It may have certainly been that, but not, as is usually claimed, because it held that “unjustified isolation (in institutions) is properly regarded as discrimination based on disability.”

That statement is only half the holding of Olmstead. There was another major element of Ginsburg’s Olmstead decision that has continued to be disregarded by many who have then gone on to mischaracterize the decision as advocating or requiring the end of institutional care. It didn’t.

As our national affiliate, the VOR, has pointed out, Ginsburg wrote a balanced decision that “supports both the right to an inclusive environment and the right to institutional care, based on the need and desires of the individual.”

In other words, the greatness of Ginsburg’s contribution to the rights of the disabled was that her decision was all about choice. It provides a choice between community-based care and institutional care to persons with cognitive disabilities.

In announcing the Olmstead decision on June 22, 1999, Ginsburg stated that that the answer was “a qualified yes” to the question whether the Americans with Disabilities Act (ADA) “…may sometimes require a state to place persons with mental disabilities in community settings rather than in state institutions.”

The key word here was “qualified.” Ginsburg’s majority opinion held:

We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings. . . Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.

As Ginsburg stated, community-based care is an appropriate option for those who desire it, whose clinicians support it, and in cases in which states have the resources to reasonably support care in the community system. Unless all three of those conditions hold, institutional care may well be the appropriate setting.

The majority decision included a reference to amicus brief submitted by VOR, which stated that:

Each disabled person is entitled to treatment in the most integrated setting possible for that person – recognizing that, on a case-by-case basis, that setting may be in an institution.

Decision has been misinterpreted

Despite those clear statements, Olmstead has continuously been misinterpreted by policy makers, administrators, and even governmental agencies as requiring the closure of all remaining state-run congregate care facilities in the country and privatizing all remaining residential care. What these advocates have done is to take the choice out of it.

The U.S. Department of Justice’s Civil Rights Division, for instance, has mistitled its technical assistance website, “Olmstead: Community Integration for Everyone.” (my emphasis). That is simply not true. Olmstead clearly implied that community integration isn’t for everyone.

In line with this misinterpretation, the DoJ has for years filed lawsuits around the country to close state-run care facilities, whether the residents and their families and guardians have opposed those closures or not. This has caused “human harm, including death and financial and emotional hardship,” according to information compiled by VOR.

While the DoJ has not filed such a suit against the State of Massachusetts, that may be because the state closed four out of six developmental centers that were in operation in the state as of 2014.  Olmstead, however, has been used as a justification in Massachusetts and other states for closing sheltered workshops, as Massachusetts did as of 2016 over the objections of many of the participants and their families.

Those acts and outcomes are not consistent with the plain language of Olmstead regarding the importance of the individual’s personal choice. Nevertheless, facility closure advocates consistently cite Olmstead as justifying their actions.

Community-based care was appropriate for original plaintiffs

The Olmstead lawsuit was brought on behalf of Lois Curtis and Elaine Wilson of Georgia, who both had diagnoses of mental health conditions and intellectual disabilities, according to a website created by attorneys with the Atlanta Legal Aid Society, who represented the women in the case.

Curtis and Wilson had asked the state of Georgia to help them get treatment in the community so that they would not have to live in a mental hospital.  According to the Atlanta attorneys, the doctors who treated Curtis and Wilson agreed that they were capable of living in the community with appropriate supports. However, both women had been waiting for years for their community-based supports to be established.

Thus, the original plaintiffs in the Olmstead case satisfied at least two of the three conditions that Ginsburg set for community-based care in the decision: their clinicians deemed community-based care appropriate for them, and they desired it. But Ginsburg recognized that might not be true of everyone in institutional care.

Olmstead wrongly used to justify continuing privatization of DDS services

The Olmstead decision is based on regulations in the ADA that stipulate that public entities should provide services and programs in “the most integrated setting appropriate to the needs” of persons with disabilities.

In Massachusetts, administrations have long contended that the most integrated settings exist in the form of community-based group homes, the majority of which are run by corporate providers that receive state funding.

The problem with this view is that there have been countless examples of group homes that offer residents little opportunity for community integration. Yet the argument that group homes are more integrated than developmental centers is ingrained among policy makers, journalists, and others. This has made it accepted wisdom that all state-run congregate care facilities should be closed — an outcome that will ultimately lead to complete privatization of care.

That appears to be the goal of federal agencies such as the Centers for Medicare and Medicaid Services (CMS), which has issued regulations and provided billions of dollars in grants intended to boost the privatized group home system around the country.

On September 23, for instance, CMS announced the availability of up to $165 million in supplemental funding to states currently operating Money Follows the Person (MFP) demonstration programs. As a CMS press release put it, this funding “will help state Medicaid programs jump-start efforts to transition individuals with disabilities and older adults from institutions and nursing facilities to home and community-based settings of their choosing.”

But while this outcome is termed a choice, the closure of the institutions will actually eliminate the choice that Ginsburg articulated in Olmstead. The VOR amicus brief, as noted, stated that on a case-by-case basis, the most integrated setting may be an institution.

The Disability Integration Act of 2019 would further erode Olmstead choice

Unfortunately, the notion that community-based care is the only appropriate option for people with cognitive disabilities is so ingrained and pervasive that the entire Massachusetts congressional delegation signed onto a bill last year, which would encourage further unchecked privatization of human services, diminished oversight, and reduced standards of care across the country.

The bill, known as the federal Disability Integration Act of 2019 (HR.555 and S.117), would potentially threaten the Wrentham Developmental and Hogan Regional centers in Massachusetts, the state’s only two remaining residential facilities for the developmentally disabled that meet federal Intermediate Care Facility (ICF) standards.

The legislation calls explicitly for the the “transition of individuals with all types of disabilities at all ages out of institutions and into the most integrated setting…” (emphasis added). As such, the bill does not comply with the choice provision in Olmstead.

We have contacted the members of the members of the state’s congressional delegation to urge them to support a change in the language of the bill to respect the choice of individuals, families, and guardians either to get into or to remain in congregate care facilities.

Given that the two versions noted above of this bill are still pending in House and Senate committees in Congress, we plan to remind the members of the Massachusetts delegation of the legacy and words of Ruth Bader Ginsburg.

In 1999, Justice Ginsburg endorsed the idea of a continuum of care for the most vulnerable members of our society. Her decision and message were models of inclusivity. Now at the time of her passing, we think it is important to remember and reflect on that.

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.

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