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

September 30, 2020 Leave a comment

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.

Ginsberg 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 Ginsberg’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.” Ginsberg’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 Ginsberg stated, community-based care is an appropriate option for those who continue to 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 Ginsberg set for community-based care in the decision: their clinicians deemed community-based care appropriate for them, and they desired it. But Ginsberg 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 Ginsberg.

In 1999, Justice Ginsberg 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 5 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 25 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.

After long fight by advocates for Nicky’s Law, key state lawmakers seek postponement of its effective date

August 21, 2020 2 comments

The chairs of a key state legislative committee are seeking a nearly year-long delay in establishing a long-sought registry of staff found to have abused persons with developmental disabilities in Massachusetts.

The delay would postpone the effective date of Nicky’s Law from January to November of next year, leading to objections from COFAR and other advocacy organizations that have fought for implementation of the legislation.

State Representative Kay Khan and Senator Sonia Chang-Diaz, the House and Senate chairs of the Children, Families, and Persons with Disabilities Committee, are both reportedly seeking the delay in implementation of the law at the request of the Disabled Persons Protection Commission (DPPC).

The DPPC, the state agency charged with investigating abuse and neglect of disabled adults, was put in charge of developing the registry under the new law.

A staff member for Khan declined yesterday to say why the DPPC, along with Khan and Chang-Diaz, are seeking the delay. “We appreciate your concern and are having further conversations,” the staff member wrote in an email in response to COFAR’s query.

On February 13, 2020, Governor Baker signed the bill into law. The legislation establishes a registry of names of employees of the Department of Developmental Services (DDS) and its providers who have been found by the DPPC to have committed acts of substantiated abuse resulting in serious physical or emotional injury.

Currently, persons applying for caregiver positions in the DDS system must undergo criminal background checks, which disclose previous convictions for abuse and other crimes in Massachusetts and other states. However, even when abuse against persons with developmental disabilities is substantiated by agencies such as the DPPC), it does not usually result in criminal charges. As a result, those findings of substantiated abuse are often not made known to providers or other agencies seeking to hire caregivers.

We have long maintained that these problems have gotten steadily worse as functions and services for the developmentally disabled have been steadily privatized over the years without sufficient oversight of the corporate provider-based system.

Last year, we analyzed DPPC data on a per-client basis of more than 14,000 abuse complaints in the Fiscal 2010-2019 period. That analysis underscored the relative dangers of privately provided, but publicly funded care. We have reported over the years on abuse and poor care are problems that involve providers throughout the system.  

An abuse registry is needed as soon as possible in Massachusetts. At the same time, we think this registry is only a start. Ultimately, the executives of the provider agencies need to be held accountable for the bottom-line mentality in many of their organizations that fails to provide resources for training and supervision of direct caregivers.

We are asking people to call the offices of the Senate and House chairs Children and Families Committee at (617) 722-1673 and (617) 722-2011 respectively, or email Senator Change-Diaz at Sonia.Chang-Diaz@masenate.gov or Rep. Khan at Kay.Khan@mahouse.gov.  Please ask them for a justification of their plan to delay the implementation of Nicky’s Law.

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