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Stan McDonald, who fought for guardianship and visits from his son, dies

Stan McDonald, who fought for many years for guardianship of his son, Andy, and championed a guardianship rights bill for parents of persons with developmental disabilities, died on May 6, his wife Ellen announced. He was 85.

We have written about Stan and Ellen’s attempts to overturn a lifetime ban imposed in 2006 by a probate court judge on visits by Andy to his hometown in Sherborn. Andy, who is now 53, is intellectually disabled, and has lived since 1993 in a group home funded by the Department of Developmental Services (DDS).

Ellen said this morning that despite the ban, Andy will be allowed to attend his father’s funeral in Sherborn. 

Stan, Andy, and Ellen in 2012

In 1986, Stan and his previous wife agreed to the appointment of a guardian for Andy as part of the settlement of a longstanding custody battle over him. Stan was unsuccessful in subsequent years in regaining his guardianship, even though his former wife, local legislators, and other supporters publicly expressed support for that.

In light of his experience, Stan waged a long-term battle for a bill in the state Legislature that would require that probate court judges consider parents as suitable guardians of persons with intellectual and developmental disabilities. COFAR is continuing to advocate for passage of the legislation, now H.1733.

In his 2006 ruling barring Andy from ever returning to Sherborn, former Probate Judge Edward Rockett stated that Andy had been arrested in 1990 for the sexual assault in his hometown, and was too dangerous to be allowed to ever return there. But it was apparently not the case that Andy was ever arrested or charged with a crime of sexual assault, according to Stan and Ellen.  Their claim appears to be backed up by the district court record and a subsequent police report.

The district court record states that Andy was arrested in Sherborn in May of 1990 for threatening an unidentified person during a telephone call.  The nature of the threats was not disclosed.  In July of that year, he was charged with disturbing the peace in downtown Sherborn, according to a police department report. That same day, he was charged with assault after he punched Ellen, his stepmother.  Stan and Ellen said the punch was accidental.

Stan and Ellen maintained that Andy has not exhibited any significant behavioral problems in the past decade. He has been taken on community outings to many places other than his home without any behavioral incidents, according to his yearly clinical care plans.  He was described in one care plan as “kind and friendly to others,” and as “a polite man.”

While an appeals court upheld Rocket’s decision in 2009, barring Andy from returning to Sherborn, the appeals court stated in a footnote that “some of the fact findings adopted by the judge (Rockett) were not supported by the evidence…” The footnote specifically stated, with regard to Rockett’s claims about the arrest for sexual assault, that “the specific facts (of the incidents in Sherborn) and the charges are not clear from the record.”

We have long called for an independent clinical evaluation of Andy. Such an evaluation was also urged by the McDonalds’ local legislators.

Stan and Ellen maintained that Andy is not dangerous and should be allowed supervised visits home.

Successful advocacy for Andy

While Stan never was granted guardianship of Andy, he was successful in advocating for better care for Andy in many instances. That advocacy included a successful effort to get clinicians to discontinue administering Stelazine, an anti-psychotic drug, to Andy. The drug had caused him to develop Tardive Dyskinesia, a disorder  resulting in involuntary, repetitive body movements.

Supporters urge restoration of Stan McDonald’s guardianship of Andy

In 2013, State Representative David Linsky, the main sponsor of Stan’s guardianship bill over the years, wrote a letter in support of Stan’s appointment as Andy’s guardian. Linsky noted that he had known Stan for 14 years and “can personally attest that he is deeply committed to his son Andy’s care and only wants the best for him.”

John Carroll, a former residential counselor to Andy at the Cardinal Cushing School, also wrote to DDS that year to say that he had frequently observed visits to Andy by Stan and Ellen, and that “I have seen theirs to be a bond that is unique and irreplaceable. Stanley’s and Ellen’s dedication to Andy’s care and treatment in all circumstances leaves no question in my mind that Stanley McDonald is the sole individual with the knowledge, experience, and love, deserving to have responsibility for major decisions in Andy’s life as guardian.”

And Stefan Grotz, the original court-appointed guardian in the case, wrote in 2002, after he had stepped down from that role, that “never have I met a more passionate advocate for a son than Stanley McDonald.” He strongly recommended to the court that McDonald be appointed as his son’s guardian. 

Guardianship bill

H.1733, which Stan advocated for continuously, would require probate court judges to presume that the parents of developmentally disabled persons, or third parties designated by the parents, are suitable as guardians for those individuals.

The bill would level the playing field in the DDS–probate court system, which often appears biased against families. As we have reported, probate judges frequently appoint attorneys as guardians of developmentally disabled persons, passing over their family members.

If they don’t have guardianship, family members can find themselves with virtually no rights or input into the care of their loved ones, and may even be excluded from contact with them.

In Stan’s memory, we would urge people to contact the Judiciary Committee, and urge the committee to act favorably on H.1733. The co-chairs are Senator James Eldridge (phone: 617- 722-1120; email: James.Eldridge@masenate.gov ) and Representative Michael Day (phone: 617-722-2396; email Michael.Day@mahouse.gov).

DDS reports drop in integrated employment of clients in the state from 2019

May 11, 2021 4 comments
A new Department of Developmental Services (DDS) “Progress Report” shows a drop in total “integrated employment” of DDS clients in Massachusetts from a high in October 2019.
 
The Fiscal ’21 Progress Report data show total integrated employment hitting a peak of 7,180 DDS clients in October 2019, and then declining to 7,090 as of October 2020. As of March of this year, only 6 additional clients had been placed in integrated employment from October 2020, five months previously.
 
The new data confirm a report in our blog post in March that there has been an employment drop. At the time, there was no comment from DDS about the matter.
 
Integrated Employment is defined by the U.S. Department of Labor as jobs held by people with disabilities in “typical workplace settings” where the majority of persons employed are not persons with disabilities.
 
In these jobs, the individuals with disabilities earn wages consistent with wages paid workers without disabilities performing the same or similar work. The individuals earn at least minimum wage, and they are paid directly by the employer. 
 
We have long maintained that the administration closed all remaining sheltered workshops in the state as of 2016 without any assurance that all or most of the participants would be able to find jobs in the mainstream workforce.
 
The new DDS Fiscal ’21 Progress Report largely blames the integrated employment slowdown on the COVID pandemic, even though numbers provided in March to us by DDS indicate the slowdown began before the pandemic began.
 
Based on the earlier figures provided by DDS to us, we calculated that the number of clients in integrated employment actually dropped by 53% between October 2019 and February of 2020, which was prior to the start of the pandemic.
 
The FY’21 Progress Report does not confirm a drop of that magnitude. But the report actually does not list any data for Calendar Year 2020 prior to October. Thus, there are no data in the Progress Report for February 2020, which was when the large drop in employment appeared to have occurred.
 
The Progress Report also shows that the number of clients being placed in day programs after the closure of the state’s remaining sheltered workshops has far outpaced the number entering integrated employment.
 

The Progress Report describes the past year as “incredibly challenging for day and employment providers and the individuals and families they serve.” The report notes that in March 2020, on-site day programs were shut down as a result of the pandemic, and were reopened in July under strict social distancing rules.

The DDS day program line item in the state budget is used, in part, to fund job skills training and other activities to help clients make the transition to the mainstream workforce.

The Progress Report states that mainstream workplaces also shut down or operated at reduced capacities during Fiscal ’20 and ’21, and stated that those shutdowns and reductions limited the number of individual and group-supported employment opportunities available.

Nevertheless, the Progress Report data indicate that after the day programs were reopened in July 2020, the numbers of clients entering integrated employment showed virtually no increase.

The report does not make specific projections regarding integrated employment in the coming fiscal year, but says that “it is expected that a similar number of adults will transition to these services in FY2022.”

Numbers entering day programs outpaced integrated employment

As noted, the Progress Report indicates that the numbers of clients being placed in day programs after the closure of the sheltered workshops has exceeded the numbers entering integrated employment.

While the numbers of clients placed in integrated employment rose by 20% from 2015 to October 2019, the number of clients in DDS day programs increased by 43% over that same period—a percentage more than twice as high—and those numbers continued to increase though March of this year. (See graph below)

Difficulty in finding jobs acknowledged

The Fiscal ’21 Progress Report acknowledges the state has experienced “difficulty obtaining job opportunities for individuals with significant disabilities who require customized work.” The report further notes:

  • Transportation challenges for people seeking or working at integrated jobs in the community, especially in geographic areas where there are limited public transportation and/or para-transit options.
  • Individual concerns with the impact on Social Security and other public benefits when individuals earn more income.

In addition, the report states that many day program providers are experiencing “workforce challenges … which result in higher vacancies and turn-over that have an impact on access to and continuity of services.”

Despite those problems, the governor and Legislature have so far proposed cuts in the Fiscal 2022 state budget for both DDS day program and transportation funding. We are continuing to advocate for a restoration of funding to the day and transportation accounts.

Equally importantly, we believe work activities are needed in the day programs to make up for the lost opportunities resulting from the closures of the sheltered workshops.

State House approves cuts to DDS day program funding, increases for provider group homes

May 5, 2021 4 comments
In approving a state budget plan for Fiscal Year 2022, the Massachusetts House late last week largely followed Governor Baker’s lead with regard to the Department of Developmental Services (DDS).
 
Both the House and governor’s budget proposals involve cutting funding for DDS community-based day programming, state-run group homes, and the two remaining developmental centers. Meanwhile, funding would be boosted, as has been the case for the past decade, for corporate provider-run group homes.
 
The budget deliberations will now be taken up by the Senate.
 
Community-Based Day Program cuts
 
The House did make a few tweaks to the governor’s proposals for DDS. In its budget plan, the House added $15 million to the governor’s proposed funding for the Community-Based Day and Work (CBDW) program line item (5920-2025). However, even the House funding would involve a significant cut of $19 million, or 8%, to the line item from the current year.
 
In his budget proposal in January, Baker specified a $34.6 million, or 14%, cut in the CBDW line item.
 
The House budget states that the $15 million added back to the CBDW line item would primarily be for the development of services in response to the COVID-19 pandemic. Those services were listed as including remote and virtual day program supports, and “in-home or in-community services.”   
 
We have previously reported that the COVID crisis resulted in a major shift to remote attendance in the CBDW programs via platforms such as Zoom. As of November 2020, 36% of day program clients were attending remotely only, according to the March 9 DDS data. 
 
The proposed cuts in the CBDW line item would appear to signal further bad news for integrated employment prospects for DDS clients because the CBDW line item is used, in part, to fund job skills training and other activities to help clients make the transition to the mainstream workforce.
 
We also previously reported that DDS data revealed a 53% drop-off in “group and individual supported employment” among clients between October 2019 and February 2020.
 
Along with the cut to the CBDW program account, the House plan would cut the DDS transportation line item by $6.2 million, or 18.6%. That would not be as deep a cut as the governor’s January proposal to cut the transportation line item by nearly 40%.
 
Corporate-provider group home funding would be increased while state-operated group home funding would be cut
 
The House adopted the governor’s proposed funding increase for corporate provider-run group homes of $120.7 million, or 9.4% (line item 5920-2000). But as we previously reported, that may be an understatement of the increase sought by Baker. The nonpartisan Massachusetts Budget and Policy Center has pegged that proposed increase at $157 million, or 12.2%. 
 
If the Senate concurs with the proposed increase, the corporate provider line item would be funded at more than $1.4 billion, which would represent a 91% increase over the funding appropriated for the same line item a decade previously, in Fiscal 2012.
 
Funding for state-funded group homes and developmental centers, in contrast, have been on a relatively flat or downward trajectory respectively, and Fiscal 2022 would be no different. (See graph below.)
Source: Mass. Budget and Policy Center

The House budget would add $100,000 to the governor’s proposed Fiscal 2022 funding for state-operated group homes (line item 5920-2010). However, when adjusted for inflation, even the House budget proposal would amount to a cut in funding for this line item of somewhat less than 1%. (We are basing that assessment on numbers from the Massachusetts Budget and Policy Center’s “Budget Browser.”)

The two remaining developmental centers would similarly see their funding cut in Fiscal Year 2022 by $2.1 million under the House budget, when adjusted for inflation (line item 5930-1000). Since Fiscal 2012, funding for the developmental center line item will have been cut by 32%.

COFAR is continuing to raise concerns regarding the ongoing under-funding of state-run DDS programs. We believe this has led to unchecked privatization of programs and services.

We are also concerned that even within provider accounts, we may be seeing a permanent pullback in funding for day programming, with much of that funding ultimately going to provider-run group homes.

Last month, we sent an issue paper raising those concerns, among others, to Senator Adam Gomez and Representative Michael Finn, the new chairs of the Legislature’s Children, Families, and Persons with Disabilities committee. You can find our issue paper here.

Staff resistance to COVID vaccine may be keeping virus in DDS system

April 27, 2021 1 comment

Resistance among group home staff in the Department of Developmental Services (DDS) system to getting vaccinated against COVID-19 seems to be an ongoing problem, and we’re concerned that it may be linked to the continuing presence of COVID in the system.

The latest online weekly COVID testing data for the DDS system show that while the number of infected staff and residents in the system has declined from historic highs in December and January, the rate of that decline may have stalled in the past several weeks. 

The vaccination effort in the DDS system started in December.

It is concerning that as of April 9 — some four months after the vaccination program began — less than 50% of staff in state-operated group homes were fully vaccinated, according to data provided last week by the Executive Office of Health and Human Services (EOHHS).  In provider-run group homes, only 51% of staff were fully vaccinated as of April 12. 

The data are as of April 12 for provider-operated group homes, and as of April 9 for state-operated group homes and the state’s two developmental centers or Intermediate Care Facilities (ICFs). The data were provided to COFAR in response to a Public Records Request. EOHHS and DDS provided data for February and March in response to a previous records request.

In the ICFs, the current level of staff vaccinations appears to be higher than in the group homes, but the numbers are still somewhat concerning. Some 68% of the staff at the Wrentham Developmental Center (WDC) and 66% at the Hogan Regional Center in Danvers were fully vaccinated as of April 9.

That this apparently low level of staff vaccinations is not simply due to a slow vaccination process appears to be borne out from the data. First of all, among residents of both state and provider-run facilities, the vaccination picture looks much brighter.

Among residents in state-run group homes, some 90% were fully vaccinated as of April 9. At WDC, 99% of residents were fully vaccinated, and 91% of residents at Hogan were fully vaccinated as of April 9.

In provider-run residences, 75% of residents were fully vaccinated, although18% had not gotten their first shot as of April 12.

The graphs below illustrate the differences in numbers of persons getting vaccinated among the different settings, and differences in vaccination levels between staff and residents. 

The graphs show that relatively large numbers of staff were still unvaccinated (the orange bars) in the provider and state-operated group homes, while the numbers of unvaccinated residents in all of the settings (the yellow bars) were much lower.

Data appear to show resistance by staff to vaccinations

Vaccination data regarding state-run and provider-run group homes appears to imply that there is a relatively large group of staff that are resisting getting the vaccine. 

For instance, of the 1,596 staff in DDS state-run group homes who did get a first dose of the vaccine as of Feb. 16, most appear to have gone on to get their second shot as of April 9. A total of 1,728 staff in the state-run group homes were fully vaccinated as of April 9, up from 277, as of February 16.

However, 1,966 staff had still not gotten their first shot as of February 16. And the data indicate that only 279 of those staff had gotten their first dose as of April 9. That left 1,687 staff still unvaccinated in the state-run group homes as of that April date.

As a result, the number of unvaccinated staff in the state-run group home system dropped by only 7.8% between February 16 and April 9, declining from 55.2% to 47.4%. 

Decline in COVID-19 in the DDS system may have stalled

As some staff have apparently continued to resist getting vaccinated, the rate of decline of COVID in the DDS system appears to have stalled.

For DDS state-operated group homes, a low in the infection rate was reached as of March 30, when 9 residents and 12 staff tested positive. That is compared to highs of 43 residents testing positive in January, and 111 staff testing positive in December. 

But as of April 20, the latest date for online data, the number of COVID positive residents in the state-operated group homes was still at 9, and the number of positive staff had crept up to 14.

In the provider-operated group homes, a low of 29 positive residents was reached as of March 23. That number was up to 31 residents as of April 20. No information is made available by the administration, for unknown reasons, on the number of staff testing positive in provider-operated homes.

At the Hogan Center, no staff or residents have tested positive since February; but at WDC, as many as 5 staff tested positive as of April 13 and April 20. No exact number is given for 5 or fewer persons testing positive in a given setting. Zero residents at WDC have tested positive since January.

So it may be the case that as long as at least some staff are continuing to resist getting vaccinated, the number of staff and possibly even of residents in the DDS system who get COVID may never reach zero.

There have been no deaths in either ICF from COVID since last November. But there have continued to be as many as five deaths per week in the group homes as recently as of April 13. That lower number of deaths in the ICFs may also reflect the fact that the vaccination rate among staff and residents in the ICFs has been higher than in the group homes.

We can only speculate as to whether the administration considers it a problem that the vaccination rate among staff in the DDS system is still as low as it is. Neither Health and Human Services Secretary Mary Lou Sudders nor DDS Commissioner Jane Ryder has responded to our multiple requests for comment about the vaccination process in the DDS system.

Until and unless the Baker administration decides that the public has a right to know their thinking on this, we will have to keep guessing.

Congress still trying to eliminate congregate care for developmentally disabled

April 19, 2021 10 comments

In their latest attempt to do away with congregate care for persons with intellectual and developmental disabilities and promote further privatization of services, lawmakers in Washington have proposed the Home and Community Based Services Access Act (HCBS Access Act).

While we support the intent of this legislation to eliminate waiting lists for disability services, the bill’s provisions are heavily biased against congregate care facilities such as the Wrentham Developmental Center and the Hogan Regional Center in Massachusetts. The bill is also biased against sheltered workshops and other programs for people who are unable to handle mainstream or community-based settings.

In that regard, this legislation is similar to the federal Disability Integration Act of 2019, which ultimately did not pass in the previous congressional session.

While we think it was good news that the Disability Integration Act didn’t pass, the bad news is that many in Congress, including most, if not all, of the Massachusetts delegation, appear to subscribe to the notion that community-based or privatized care is the only appropriate option for people with cognitive disabilities. 

Every member of the Massachusetts delegation signed on to the Disability Integration Act, which would have encouraged further unchecked privatization of human services, diminished oversight, and reduced standards of care across the country. The HCBS Access Act would do so as well.

Comments are due April 26 on the HCBS Access Act, which has been proposed by Representative Debbie Dingell (D-MI), Senator Maggie Hassan (D-NH), Senator Bob Casey (D-PA), and Senator Sherrod Brown (D-OH). Comments can be sent to HCBSComments@aging.senate.gov.

We will also be urging the members of the Massachusetts delegation to take another look at the issue of congregate care, and reassess their positions.

The HCBS Access Act actually appears to go a step beyond the Disability Integration Act in that it would potentially eliminate funding for Intermediate care facilities (ICFs), including the Wrentham and Hogan Centers.  Currently, the federal government pays 50% of the cost of care in both ICFs and community-based group homes. The state pays the other 50% of the cost.

The HCBS Access Act would change that federal-state funding formula to require the federal government to pay 100% of community-based group home costs. The federal share of the cost of ICFs would remain at 50%. That would place enormous pressure on states to eliminate ICFs since they would continue to receive only 50% federal funding.

As the National Council on Severe Autism (NCSA), a nonprofit organization, noted in comments on the HCBS Access Act, ICFs are “a key component of the national safety net.” The organization pointed out that it is a “fiction” that all community-based settings are better or safer than settings labeled as “institutional.”

“’Community services’ in reality often mean no supervision, no licensing, no consulting medical or nursing personnel, no properly trained staff to handle medical/behavioral crises, high burnout and turnover,” the NCSA stated in its comments. 

Among the many unanswered questions involving the HCBS Access Act are how the federal government would pay the cost of 100% reimbursement of all community-based care.

The NCSA made a number of additional observations about the legislation, including the following:

  • The bill is based on a “false assumption that the Medicaid system contains an ‘institutional bias’ that keeps adults with disabilities locked away from the community at large.

The NCSA noted that the steady closure of ICFs and sheltered workshops around the country in recent years “has already had the devastating impact of depriving individuals of critical options.”  

  •  The bill would only support “supported (integrated or community-based) employment and integrated day services.”

According to the NCSA, the bill “could shutter desperately needed programs serving the severely disabled who are incapable of participating in integrated day services owing to their severe cognitive, behavioral, medical and functional challenges.”

We have been raising these same concerns about the closures of ICFs and sheltered workshops in Massachusetts for many years.

  • The bill overlooks the difficulty of finding housing in the community for persons with autism, and the possibility of eviction for those with dangerous or disruptive behaviors. 

We have also noted the potential for isolation of community-based group home residents whose guardians are perceived as troublesome or meddlesome 

  • The bill would establish an “advisory committee” that would place veto power in the hands of a few advocates. The NCSA stated that “a small, unelected and unaccountable committee would be handed broad discretion to determine what qualifies as HCB services across the country, trumping whatever needs and preferences of severely disabled individuals,”

 As we noted about the Disability Integration Act, this new legislation does not comply with the choice provision in the Olmstead v. L.C. U.S. Supreme Court case. In 1999, the late Justice Ruth Bader Ginsburg, who wrote the majority opinion in Olmstead, endorsed the idea of a continuum of care for the most vulnerable members of our society. Her decision and message were models of inclusivity.

We urge people to email the Senate Special Committee on Aging, as we plan to do, at HCBSComments@aging.senate.gov. Feel free either to paste in this blog post or forward a link to it, along with a short message in opposition to the HCBS Access Act as currently written.

COVID-19 vaccinations appear to be working in the DDS system, but information is lacking

April 5, 2021 1 comment

Data received last week from the state show that as of early March, more than 80% of residents and a little over 50% of staff in residential facilities directly run by the Department of Developmental Services (DDS) had been fully vaccinated for COVID-19.

One would assume that by now, all residents in the DDS system and most of the staff have been vaccinated. But the numbers are almost a month old, and DDS said it does not have vaccination data on residents or staff in provider-run homes.

DDS provided the vaccination numbers for the sate-run facilities on March 29 in response to a Public Records Request we had sent on February 18.

Vaccination data also provided on March 29 by the Executive Office of Health and Human Services (EOHHS) in response to the same Public Records Request does include numbers on vaccinations of residents and staff in provider-run homes. But the EOHHS data is even more out of date than the DDS data.

A spreadsheet provided by EOHHS is dated February 23. The EOHHS data showed that as of February 23, 24% of staff and 38% of residents in the DDS provider-run group home system had been fully vaccinated. EOHHS is the state’s umbrella human services agency, and DDS is located under it.

The chart below, based on the DDS data, therefore shows the most up-to-date information we have from the administration on vaccinations in the DDS system:

Source: DDS

On April 1, I submitted a new Public Records Request to EOHHS, this time asking for current data on vaccinations in both provider-run group homes and state-run residential programs.

In addition to the lack of up-to-date vaccination data, both EOHHS and DDS said they did not have any records on numbers of staff or residents refusing vaccinations. We think the difficulty involved in getting this information on vaccinations in the system is troubling.

Since last May, the Baker administration has been posting at least some information in its online weekly state facilities reports on COVID test results of residents and at least some staff in the DDS system. But getting information on vaccinations is another story.  

COVID test results continue to be promising

Those COVID test results continue to be encouraging, apparently reflecting the large numbers of residents and staff that have been vaccinated.

As of the March 30 state facilities report, residents testing positive in both state and provider-run group homes declined to some of their lowest levels since the COVID crisis began. There have been no residents or staff testing positive at either the Hogan Regional Center or the Wrentham Developmental Center since late February. There have been no deaths of any residents in either facility due to COVID since last November.

The numbers of infected residents and staff in DDS state-operated group homes and in the two developmental centers have also declined to all-time lows since the crisis began.

As of March 30, 9 residents and 12 staff in state-operated group homes tested positive, compared to highs of 43 residents testing positive in January, and 111 staff testing positive in December.

In the provider-run group home system, 32 residents tested positive as of March 30, compared to a high of 305 in January. As we have previously noted, no information is made available by the administration, for unknown reasons, on the number of staff testing positive in DDS provider-operated homes.

Administration won’t comment on the vaccinations or test results

In February, I emailed both EOHHS Secretary Mary Lou Sudders and DDS Commissioner Jane Ryder, asking for comment on whether the vaccines were responsible for the declining numbers of infected persons in the DDS system even at that early period in the vaccination effort. Neither Sudders nor Ryder ever responded. Why the administration won’t comment on this is perplexing.

Month-long delay in providing records

On February 18, I filed an initial Public Records Request with both EOHHS and DDS, asking for:

 1. Records and internal emails that discuss projected timeframes for vaccinating residents and staff in DDS residential facilities; and

2. Records indicating the number of residents and staff who have been vaccinated in DDS residential facilities, broken down by type of facility.

On February 23, I additionally asked for:

3. Records indicating the number of staff and residents in the residential facilities who have refused vaccinations.

As noted, neither DDS nor EOHHS responded with any records until March 29. In its response, DDS stated that it had no internal emails discussing vaccination time frames. While EOHHS did indicate that it had such emails, the agency said it would only provide them if we were willing to pay $1,150 for search and redaction fees.

Also, as noted, both agencies said they had no records on numbers of individuals refusing vaccines.

While DDS had no internal emails on vaccine timelines, the Department stated that the administration had placed residents and staff in congregate care settings under Phase 1 of its vaccine distribution plan. Phase 1 ran from December 2020 through February 2021.

What we know now

At this point, all we can say with any degree of certainty is that most of the residents in state-run congregate care facilities in the DDS system have probably been vaccinated by now. The rest is pretty much conjecture despite our repeated efforts to get more concrete information out of the administration. Those efforts have now included filing two Public Records Requests.

In a letter, dated March 24, to the “DDS community,” Ryder maintained that the administration had heard the “voice” of that community in responding over the past year to the pandemic. “Your voice was instrumental in driving and shaping these developments. You let us know when our policies and protocols went too far – or not far enough,” she wrote.

Ryder added that, “DDS remains committed to hearing your voice, and keeping you informed and engaged as we go.”

If Commissioner Ryder is truly committed to hearing our voice and keeping the DDS community informed, she can start by providing up-to-date information on vaccine distribution in the system, and by responding to our repeated requests for her comment on these matters.

DDS numbers show pre-COVID drop in mainstream employment of DDS clients

March 25, 2021 6 comments

Despite continuing clams by the state that people with developmental disabilities are finding jobs and thriving in the mainstream workforce, newly provided state data show a steep drop in “supported” or “integrated employment” for those persons as of early 2020.

A comparison of the new data from the Department of Developmental Services (DDS) with data previously available from the Department reveals a 53% drop-off in “group and individual supported employment” between October 2019 and February 2020. (See graph below)

As the graph shows, the employment numbers actually rebounded a little bit as of November 2020, which was during the COVID period, but then dropped again as of February 2021.

DDS Individual and Group employment totals

Source: DDS

The employment numbers starting from November 2019 were provided by DDS to COFAR on March 9 in response to a Public Records Request. The previous numbers from June 2014 through October 2019 are from an online DDS December 2019 “Employment First Progress Report.” 

The drop in the number of DDS clients in “individual and group supported employment” positions is prior to the COVID crisis, so COVID-19 and its impact could not be the cause.

The DDS data raise further questions about the state’s claims in closing all sheltered workshops as of 2016 that DDS clients would find better and more fulfilling work opportunities in the mainstream workforce.

Baker administration officials since 2016 have attempted to put a positive spin on the situation, with then DDS Commissioner Elin Howe maintaining that year that “there are now more people working in individual jobs in the community than ever before.” But even then, it appeared the administration was gaming the numbers.

The DDS 2019 “Employment First Progress Report” continued to try to cast mainstream employment prospects for developmentally disabled persons in the most positive light. While recognizing a “difficulty in obtaining job opportunities for individuals with more significant disabilities,” the progress report nevertheless touted:

An increase in the total number of individuals now employed, earning minimum wage or higher, and receiving the same benefits as other employees;

An increase in the number of individuals earning minimum wage or higher in small Group-Supported employment services to 71%; and

Continued evolution of Community-Based Day Support programs that support individuals on their pathway to future employment via skill-building and other meaningful activities.

But COFAR and a number of family members have pointed out that what actually occurred in the wake of the closures of the sheltered workshops was the transfer of thousands of clients to day programs where there was little or nothing for them to do.  It appeared early on that the numbers of available job opportunities in “integrated” or or mainstream settings was extremely limited.

DDS does not yet appear to have published a further progress report on integrated employment since the December 2019 report.

DDS day programs continue to draw clients, but more than a third began attending remotely

As we have previously noted, the numbers of Massachusetts DDS clients placed in Community-Based Day and Work (CBDW) programs since the closures of the sheltered workshops has outpaced the number of clients who have been given integrated employment opportunities.

The newly provided data from DDS show a 22% drop in overall CBDW participation during the initial months of the COVID crisis — from February 2020 through November 2020. But the numbers began to rise after that; and as of February of this year, the number of day program participants hit an all-time high of 7,569 clients.

DDS CBDW program totals

Source: DDS

Nevertheless, the COVID crisis resulted in a major shift to remote attendance in the day programs via platforms such as Zoom. As of November 2020, 36% of day program clients were attending remotely only, according to the March 9 DDS data. DDS did not provide figures after November 2020 on the number attending remotely.

Due to that remote attendance rate, CBDW programs are now being subjected to proposed funding cuts by Governor Baker in his Fiscal Year 2022 budget.

That is apparently further bad news for integrated employment prospects because the CBDW line item in the DDS budget is used, in part, to fund job skills training and other activities to help DDS clients make the transition to the mainstream workforce.

No response from Commissioner Ryder

On March 16, I sent an email query to DDS Commissioner Jane Ryder, asking for a comment on the apparent drop in client participation in integrated employment, and for her assessment of possible reasons for it. Ryder so far has not responded to my request.

DDS said it does not possess records relating to the future of CBDW programs

In its March 9 response to our Public Records Request, DDS stated that the Department does not possess any records concerning projections of the number of clients who will be enrolled in CBDW programs in FY22 and beyond, or concerning the number of such programs that will exist, the financial viability of such programs, or the number of clients who will attend remotely.

One question the DDS response leaves us with is whether it implies that DDS does not engage in planning regarding CBDW programming.

Need is greater than ever for work opportunities in day programs

It seems clear that the administration’s integrated employment promises for persons with developmental disabilities were not being realized even prior to the COVID crisis.

Recognizing that problem, we had supported a bill in 2019 (H.88), which would have required that meaningful work activities be provided in CBDW programs themselves. Unfortunately, the language in the bill was subsequently replaced by the Children, Families, and Persons with Disabilities Committee with language establishing yet another Commission on the Status of Persons with Disabilities.

What the latest DDS data confirms, in our view, is that the administration and Legislature need to rethink the ideology that led to the closures of the sheltered workshops, and take substantive action to provide work opportunities to people with developmental disabilities.

Governor’s proposed Fiscal ’22 increase to DDS corporate residential providers is apparently higher than what the state is reporting

March 12, 2021 2 comments

While we knew that Governor’s Baker’s proposed Fiscal 2022 state budget includes a major increase to the Department of Developmental Services (DDS) corporate provider-based residential system, we didn’t know how high that proposed increase actually is.

That’s because the amount of Baker’s increase appears to be under-reported by some $36 million on the state’s Mass.gov website.

The state budget site on Mass.gov currently lists the governor’s proposed funding for the provider residential line item (5920-2000) as $1.41 billion for the coming fiscal year. That would amount to a $121 million, or 9.4%, increase over the amount appropriated for the current fiscal year. That’s what we reported in our COFAR Blog post on February 2.

But according to the nonpartisan Massachusetts Budget and Policy Center (MBPC), which tracks the state budget, Baker’s real proposed funding for the provider residential line item is $1.44 billion – an amount $36.4 million higher than the number reported on Mass.gov. The real increase being proposed by Baker is $157 million, or 12.2%.

The reason for the higher funding amount, according to the MBPC, is a proposed, but unreported transfer by the administration of $36.4 million to the provider residential line item from another DDS line item — the Turning-22 account (line item 5920-5000).

The provider residential line item is one of five DDS accounts to which the administration has proposed transferring a total of $55.4 million from the Turning-22 account. Turning-22 funds programs for persons entering the DDS system at the age of 22.

The Mass.gov site lists proposed Fiscal 22 funding for the Turning-22 account of $79.9 million, which would be an increase over the current year of $54.9 million, or 219%. But as a result of the line-item transfers, rather than providing an increase of $54.9 million to the Turning-22 line item, the governor’s FY 22 budget would actually cut the Turning-22 line item by $877,900, according to the MBPC.

It’s not clear to us why the administration has proposed the transfers among the DDS accounts, and it remains to be seen whether the House Ways & Means Committee, which is now considering the governor’s FY22 budget, will adopt the  transfers.

It’s also not clear that the administration is intentionally trying to mislead Mass.gov website users in failing to include the amounts transferred among the line items. Nevertheless, the misleading reporting is worrisome to us for a number of reasons.

One reason is that we have long been concerned that the provider residential line item has been steadily increased by successive administrations and by the Legislature at the expense of state-run programs and other accounts. It now appears to be getting an even larger increase than is being reported publicly.

We contacted the MBPC earlier this week after noticing several discrepancies between the DDS line item numbers on he Mass.gov site and the numbers that can be accessed via the MBPC’s online “Budget Browser.”

The Budget Browser is a database of state budget line item amounts since Fiscal 2001, and it provides additional numbers adjusted for inflation.

An MBPC analyst confirmed the DDS line-item discrepancies, and explained the transfer situation to us. The MBPC received a list of the transfers from the administration and forwarded the list to us. The analyst said the transfers themselves are an internal accounting process used in comparing budget numbers over multiple years. If that’s the case, it is still not clear to us why those adjusted numbers are not reported on Mass.gov.

The transfers are displayed in the chart below, along with the governor’s DDS budget amounts as reported on Mass.gov, and the adjusted amounts available from the MBPC via its Budget Browser.

Governor’s budget overstates proposed cut to DDS Day and Transportation accounts

In addition to the proposed transfer of funding to the provider residential line item, Baker has proposed a transfer of $9.6 million from Turning-22 to the Community Day and Work line item.

Based on the Mass.gov site, it appears Baker proposed an overall cut to the Community Day line item of $36.6 million. But due to the transfer from the Turning-22 account, the governor’s proposed cut to the Community Day account would actually be $25 million. That is still a concerning cut, but the transfer would make that cut smaller than it appears on the Mass.gov site.

Baker has proposed additional transfers from the Turning-22 account to the DDS Transportation line item ($4.7 million); Autism Omnibus line item ($4 million), and Respite and Family Services ($613,000).

No transfers proposed into state-funded program line items

Baker has proposed zero transfers to state-run accounts such as the state-operated group homes and developmental centers.  As we reported, Baker’s FY 22 budget would shortchange state-operated group homes and developmental centers.

The state-operated group home line item would be cut by $898,600 under the governor’s budget, when adjusted for inflation. The developmental center line item would, as usual, be cut — this time by $2.1 million.

As we’ve previously noted, the major increases in funding to the provider-based line item since FY12 have enabled the corporate providers in the DDS system to garner sizeable surplus revenues in the intervening years. Those surpluses have enabled the providers to provide yearly increases in executive salaries, but have not translated into living wages for direct-care workers employed by them.

We will submit testimony to the House Ways and Means Committee shortly, raising our concerns about the unreported DDS transfers. We are particularly concerned and have questions about the major transfer of funds out of the Turning-22 account.

We would also urge the administration to correct the Mass.gov budget site to reflect the true line item numbers under Baker’s Fiscal 22 budget proposal.

Fernald may be closed, but it’s still being blamed for the ills of the DDS system

March 3, 2021 17 comments

The Fernald Developmental Center in Waltham has been closed for some seven years.

But activists who oppose all forms of congregate care are still making the former facility a focus of blame for the failures of the state’s care for people with developmental disabilities, even if it means portraying only one side of Fernald’s history.

It appears the latest effort to denigrate Fernald is a scheduled Zoom panel discussion being sponsored on March 10 by the Harvard Law School.

The discussion, titled “Fernald’s Legacy,” will feature Alex Green, a leader of a protest of a holiday light show late last year on the Fernald campus. Green started a petition last fall to stop the light show, contending a festive show on the campus would be “inappropriate, given (Fernald’s) history of human rights abuses and experimentation on children.”

A promotional text for the upcoming Harvard panel discussion refers to the legacy of institutions such as Fernald as “lurid,” and states that society must “critically and publicly interrogate the role they played in shaping today’s services, systems, and attitudes for persons with disabilities.” (my emphasis)

But dismissing the entire legacy and history of Fernald and similar facilities in Massachusetts as lurid may in fact be failing to “critically interrogate” their role.

Fernald was not the same institution by 1993 that it had been in 1970

Fernald’s past is, of course, notorious and controversial. Until the early 1980s, Fernald and other similar state-run centers were indeed horrendous warehouses of abuse and neglect.

In fact, many of COFAR’s members were plaintiffs in Ricci v. Okin, a combined class-action lawsuit first brought in the early 1970s by the late activist Benjamin Ricci over the conditions at the Belchertown State School. The Ricci lawsuit resulted in a consent decree that included the then Belchertown, Fernald, Wrentham, Dever, Monson, and Templeton state schools.

It was due to the dedication of the late U.S. District Court Judge Joseph L. Tauro in overseeing the consent decree that conditions at Fernald and the other state schools finally began to change.

What Green and other activists fail to understand or acknowledge is the revolutionary change that occurred at Fernald and the other institutions as a result of the litigation and Judge Tauro’s intervention. But acknowledging that change would be inconvenient if their purpose is to portray all congregate care, even as it exists today, as uniformly bad.

We have encountered this one-sided viewpoint repeatedly over the years among advocates, politicians, public administrators, and journalists.

That viewpoint betrays a lack of understanding of the history of care of the disabled in Massachusetts and elsewhere around the country. It also shows a lack of understanding of the strict federal standards under Title XIX of the Social Security Act that state-run developmental centers, also known today as Intermediate Care Facilities (ICFs), must meet.

Acknowledging the change that occurred at Fernald is also inconvenient for corporate group home providers to the Department of Developmental Services (DDS) and their lobbyists such as the Arc of Massachusetts. Since Fiscal 2014, when Fernald was closed, the DDS provider residential line item in the Massachusetts budget has risen by $354 million, or 37%, when adjusted for inflation.

That may explain why the Arc signed on to Green’s petition to stop the light show at Fernald, and why the Arc continues to lobby in favor of further closures of congregate-care facilities and further privatization of DDS services.

Our request to be on the Harvard Law School panel was not accepted

On Monday (March 1), I sent a detailed email to Green and to William P. Alford, chair, and Michael Stein, executive director of the Harvard Law School Project on Disability, which is hosting the panel discussion. In the email, I tried to present a balanced view of Fernald’s legacy, and suggested that the panel include at least one person who is aware of Fernald’s full history and understands its real meaning and importance. Tom Frain, our Board president, was willing to fulfill that role on the panel.

Yesterday, I received a 3-sentence response from Professor Stein, saying only that the event is open to the public and that we should “be respectful of the views expressed by our panelists.” He didn’t accept our offer to serve on the panel.  Presumably, the most we would be allowed to do is participate in a question-and-answer session at the end of the discussion. As a result, we will pass on attending what is likely to be a one-sided event.

Stein’s email to me did not acknowledge, much less respond to any of the points I had raised about Fernald’s legacy.

The following are the points I made in my original email to Stein, Alford, and Green:

Judge Tauro attested to the improvements at Fernald

Judge Tauro, who died in November 2018 at the age of 87, had visited Fernald, Belchertown and the other Massachusetts facilities in the early 1970s to observe the conditions first hand. He noted two decades later in his 1993 disengagement order from the consent decree that the legal process had resulted in major capital and staffing improvements to the facilities and a program of community placements.

Those improvements and placements, Judge Tauro wrote, had “taken people with mental retardation from the snake pit, human warehouse environment of two decades ago, to the point where Massachusetts now has a system of care and habilitation that is probably second to none anywhere in the world.”

It is unfortunate that in a media release that Green wrote in November about the protest of the planned light show at Fernald, he appears to have selectively used only the “snake pit” portion of Judge Tauro’s statement in referring to Fernald and the other facilities. That, of course, reversed the meaning of Tauro’s disengagement statement.

Deinstitutionalization has not been a uniform success 

Judge Tauro believed in the importance of a continuum of care for people with intellectual and developmental disabilities (I/DD), and knew that institutions such as Fernald had an important role to play in it. In his 1993 disengagement order, he maintained that facilities such as Fernald should not be closed unless it was certified that each resident would receive equal or better care elsewhere.

As the years went on, the promise of equal or better care in the community was not realized. Deinstitutionalization has turned out to be fraught with problems for people with I/DD just as it has for people with mental illness. Between 2000 and 2014, the VOR, our national affiliate, catalogued hundreds of cases of abuse and neglect in privatized group homes around the country.

In testimony in 2018 to a legislative committee, Nancy Alterio, executive director of the Massachusetts Disabled Persons Protection Commission (DPPC), stated that abuse and neglect of persons in the Department of Developmental Services (DDS) system had increased 30 percent in the previous five years, and had reached epidemic proportions.

Alterio’s testimony came long after the State of Massachusetts had begun to rely primarily on privatized, community-based group homes for residential care of persons with I/DD, and long after the state had phased out and closed all but two state-run ICFs comparable to Fernald.

Our own analysis of more than 14,000 allegations of abuse made to the DPPC showed that the rates of substantiated abuse and neglect per client in those two remaining ICFs — the Wrentham Developmental Center and the Hogan Regional Center — were practically zero between Fiscal 2010 and 2019.

Yet many advocates for corporate providers, such as the Arc of Massachusetts, have pushed for decades for complete deinstitutionalization and for additional privatization of services for people with I/DD. They have been joined by administrations at the state and national levels, which have continually made state-run care and services targets for closure and outsourcing to contracted providers.

Since 2009, the U.S. Justice Department has filed, joined, or participated in lawsuits around the country to close ICFs regardless of whether the residents or their families or guardians wanted to close the facilities they were living in or not.

Fernald’s opponents have misinterpreted the landmark Olmstead v. L.C. Supreme Court decision

Those advocates of deinstitutionalization and privatization have consistently misinterpreted the 1999 Olmstead v. L.C. U.S. Supreme Court decision, which held that institutional care is appropriate for those who desire it and whose clinicians recommend it.

The late Justice Ruth Bader Ginsburg wrote the majority opinion in Olmstead, which has been characterized as holding only that unjustified isolation in institutions is “discrimination based on disability.” But that statement is only half the holding of Olmstead.

There was another major element of Justice 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 the VOR has pointed out, Justice 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.”

Justice Ginsburg’s majority opinion held that:

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 Justice 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.

Fernald’s families fought the closure of Fernald from 2003 through 2014 

In 2004, the plaintiffs in original Ricci v. Okin consent decree litigation asked Judge Tauro to reopen the case, arguing that the then Romney administration was illegally trying to close Fernald, and was thereby violating the terms of Tauro’s disengagement order. Those plaintiffs included families and guardians of Fernald residents, and members of COFAR and other advocacy organizations.

In February 2006, Tauro appointed then U.S. Attorney Michael Sullivan as Court Monitor in the case and asked Sullivan to review the transfers of 49 residents from Fernald since 2003. Sullivan ultimately recommended to the newly installed Patrick administration that Fernald remain open.

In making the recommendation, Sullivan maintained in his report to Tauro that while the level of care there might be able to be duplicated elsewhere, the loss of familiar surroundings and people “could have devastating effects [on the residents] that unravel years of positive, non­abusive behavior.”

Tauro subsequently ruled that the families at Fernald must be given the option of remaining there. But the Patrick administration ignored Sullivan’s recommendation and appealed Tauro’s ruling to the U.S. First Circuit Court of Appeals. The Circuit Court of Appeals overruled Tauro, without giving deference to his expertise in the case; and the Patrick administration proceeded to phase down and close Fernald and later three other ICFs of the six remaining in the state.

By 2014, the year Fernald was closed, some 14 families were still fighting legal and administrative battles to keep the facility open for their loved ones because they believed the care there was better than in the community-based system.

Those families came in for relentless media criticism and blame from lobbyists for corporate providers, who were seeking to close Fernald and the remaining state-run centers, and to garner the lucrative state contracts that would result from it.

The incestuous nature of the privatized system

The closures of ICFs around the country and the rise of the privatized system of care have provided enormous financial windfalls for politically connected corporate contractors. Their executives have garnered huge increases in their personal compensation, but have frequently neglected to pass through the ever higher levels of state funding to direct-care workers. That is one of the reasons for the epidemic of abuse and neglect in the corporate provider-based system of care.

In 2015, we calculated that more than 600 executives employed by corporate human service providers in Massachusetts received some $100 million per year in salaries and other compensation. By our calculations, state taxpayers were on the hook each year for up to $85 million of that total compensation.

As noted, the line item in the Massachusetts state budget for DDS-funded residential providers has been boosted by hundreds of millions of dollars since Fernald’s closure. Yet, as Massachusetts State Auditor Suzanne Bump’s office reported in 2019, 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.

Administrations mistakenly believe closing ICFs will save money

Much of the justification for, and reasoning behind, closing developmental centers has been based on the fact that providers pay lower wages than do public agencies to direct-care workers. Successive administrations in Massachusetts have also sought to operate the ICFs as inefficiently as possible in order to make them appear as expensive as possible, thereby justifying their closure.

In 2014, the Fernald Working Group, a coalition of local organizations, had recommended a cost-effective approach to care in that setting. Their proposal was that the Fernald Center be downsized and converted to group homes on a portion of the campus while the remainder of the campus was opened to development, open space, and other uses.  Similar proposals had been made over the years by the former Fernald League and COFAR.

But the then Romney and subsequent Patrick administrations were interested only in one thing — closing Fernald and three other ICFs in the state, contending the state would save tens of millions of dollars a year in doing so. They never considered any of the proposed alternatives to the closures.

That there isn’t necessarily a long-term fiscal savings in transferring people from developmental centers to decentralized, provider-based care has been acknowledged even by one of the leading proponents of deinstitutionalization in the Obama administration.

In a law journal article, Samuel Bagenstos, a former top litigator in the Justice Department’s Civil Rights Division, acknowledged that any cost savings in closing developmental centers “will shrink as people in the community receive more services.”

He added that a significant part of the cost difference between institutional and provider-based care “reflects differences in the wages paid to workers in institutional and community settings — differences…that states will face increasing pressures to narrow.”

Today, as noted, two ICFs remain in Massachusetts – the Wrentham Developmental Center (WDC) and the Hogan Regional Center in Danvers. We rarely, if ever, hear that families or guardians are unsatisfied with the care there.

Mary Ann Ulevich, a COFAR member and a member of the Wrentham Board of Trustees and of the Wrentham Family Association, wrote to DDS Commissioner Jane Ryder in November 2019 in praise of the care her cousin, Tom Doherty, had received at WDC. Tom had died on October 24 at the age of 68. Ms. Ulevich wrote:

I just want you to know how proud you can be of the work carried out at WDC. I know that the philosophy of care for those with intellectual disability is to provide support to remain in their community with their families, with guidance and services. I fully support this contemporary approach, but acknowledge that there are many who because of their history and challenges, and/or because of the progression of their needs combined with diminished family and community resources, can and do thrive in facility-based care.

Here are additional accounts of the value that families put today on the care at WDC.

Apparently, if we keep blaming Fernald and other congregate-care facilities for all of the dysfunctionality of the DDS system, we will not have to admit that the problems with abuse and neglect and financial mismanagement in the system primarily lie elsewhere.

Records imply ‘strong’ disagreement in Baker administration last summer over mandatory COVID testing of DDS staff

February 25, 2021 3 comments

Top administrators in the Baker administration appeared to strongly disagree last summer over whether to require testing of staff for COVID-19 in group homes and other residential facilities for persons with developmental disabilities, according to emails received under a state Public Records Law request.

The emails, provided earlier this month to COFAR by the Department of Public Health (DPH), appear to imply that as late as last July, both Health and Human Services Secretary Marylou Sudders and Assistant Secretary for MassHealth Daniel Tsai strongly opposed mandatory testing of staff in residential facilities in the Department of Developmental Services (DDS) system.

At the same time, the emails indicated that DPH Commissioner Monica Bharel and members of her office supported mandatory testing.

Sudders has not responded to a request for comment on the matter. In an email to COFAR sent today (February 25), Jennifer Barrelle, Bharel’s chief of staff, said Sudders “was supportive of mandatory testing…”  However, Barrelle’s email was unclear as to when Sudders’ support began.

Sudders’ agency, the Executive Office of Health and Human Services (EOHHS), oversees departments such as DDS and DPH. By mid-August, EOHHS finally issued a directive requiring testing of staff throughout the human services system. However, this was some five months after the pandemic became a full-blown crisis in the state.

The apparent opposition by Sudders and Tsai at the top of the human services secretariat as late as July could help explain the lengthy delay in implementing the mandatory testing of residential staff.

COFAR and other advocacy organizations had urged mandatory testing as early as April 2020, arguing that staff were potentially a major source of the introduction of the virus in group homes and other residential facilities. Sudders and other administration officials have never explained why it took so long to finally require staff to be tested.

I sent emails on Sunday (February 21) to both Sudders and Bharel, asking for their comment on the newly provided emails. As noted, Sudders has not responded.

In one internal DPH email, dated July 8, 2020, Bharel stated to several members of her office that she had just spoken with Assistant EOHHS Secretary Tsai:

 …and he feels strongly and say (sic) the Secretary (Sudders) does too — around mandatory testing for staff. But he is willing to think it through and learn more. We can discuss at our 10 am call Friday- I know folks on this email have strong beliefs.

Bharel didn’t say in the email what those beliefs were — just that Sudders, Tsai, and “folks on this email” had “strong beliefs” about mandatory testing of staff. The implication, however, was that Sudders and Tsai had different beliefs than did Bharel and her team.

Meanwhile, an internal DPH discussion document in July recommended mandatory testing of congregate care staff.

In her July 8 email, Bharel asked a member of her office to find other instances around the country in which staff testing was mandatory, apparently in order to help make the case to Sudders and Tsai for mandatory testing in Massachusetts.

Bharel further asked in the email whether there was “a model for how many staff need to be tested to feel the surveillance (ongoing testing of staff) is enough? 50%? 60%? How do you decide?”

In her email to COFAR today, Barrelle said that in implementing the mandatory testing program, the administration was involved in negotiations with state employee unions. At least one union filed unfair labor charges against the state for the mandatory testing program, she said.

“You are incorrectly interpreting that Secretary Sudders was opposed to mandatory staff testing,” Barrelle’s email to COFAR stated. “Secretary Sudders was supportive of mandatory testing and rolled it out across all congregate care programs within health and human services within weeks of these (July internal DPH) emails.”

Barrelle’s email to COFAR was not clear, however, as to whether Sudders’ support for mandatory testing may have only begun after July.

DPH office found examples of mandatory staff testing

In a July 9, 2020, email in response to Bharel’s query to her office about other jurisdictions that had implemented mandatory staff testing, the office member provided links to online media accounts in July of testing requirements for staff in colleges and private sector settings.

The office member then noted that in June, the State of Connecticut had begun requiring staff in nursing homes and congregate care settings in that state to be tested for the virus. That was some two months before the Baker administration in Massachusetts issued its mandatory testing directive.

DPH July discussion document recommended staff testing

In addition to the July emails within DPH, a document slated for discussion in Bharel’s office in July included, as a “key question for discussion,” whether COVID testing should be a “mandatory requirement” of staff in state-operated facilities, including hospitals and congregate care facilities.

Option A, which was recommended in the discussion document, was “Yes, testing is a mandatory requirement in state-operated facilities with a goal of achieving full (~90%) compliance.” It wasn’t clear whether this option did or did not include provider-operated facilities.

Under Option A, staff would be given three chances to comply with testing, with a first refusal resulting in a 5-day leave; a second refusal resulting in a 14-day leave; and a third refusal resulting in termination of employment.

Option B was “No, staff are able to refuse testing.”

This second option stated that without mandatory testing, “experience demonstrates that to-date, state-operated facilities are able to achieve 50-65% compliance when access barriers (e.g., shift timing) are limited to the extent possible.”

EOHHS guidance on staff testing, which, as noted, was issued in August by the administration, does not appear to refer to any penalties for staff testing refusals.

Records came from DPH, but not from EOHHS 

We initially filed Public Records Law requests last May with EOHHS, DPH, and DDS for internal emails regarding the mandatory testing issue. In June, after EOHHS indicated their responsive records would be voluminous, we modified our request to limit it to emails between Sudders and her executive team.

We received the emails noted above from DPH on February 1. We never received any records from DDS.

On September 30, after two appeals, EOHHS provided us with just one internal email, dated May 22, which consisted solely of a reprint of a blog post that we had published about mandatory testing a few days previously (COFAR Blog: DDS may be flouting state and federal guidelines in failing to make testing of group home staff mandatory).

That sole EOHHS email did not include Sudders on the thread and contained no comment on the subject of mandatory testing or our blog post. Given EOHHS’s initial claim that they had a large number of responsive emails, we again appealed to the Public Records Division, contending it was unlikely there was only one email in existence in the agency on the issue.

On October 15, 2020, the Public Records Supervisor ordered EOHHS to identify other potentially responsive records within 10 days to our original public records request. But EOHHS never acted in compliance with the Supervisor’s order. We received no further communications from EOHHS.

In our email to Sudders on Sunday, we asked why EOHHS still had not complied with the Public Records Supervisor’s October 15 order regarding our records request, and whether the agency intends to comply with it.

Administration still does not report COVID testing results for provider-based staff

In addition to being slow to require testing of staff in the DDS system, the administration has had a spotty record of reporting the results of that testing.

It was not until May that EOHHS began publicly reporting testing data in the DDS system; but the reporting system has continued to have major gaps in it. Those reports contain no information, for instance, on the number of infected staff in DDS provider-run residences, which constitute, by far, the largest network of DDS group homes.

Starting in November, weekly state facility reports had begun showing results of testing on provider staff in all EOHHS human services group homes. But not only were those reports not broken down by individual agency, such as DDS, the reports started combining provider-run group home results with state-run group homes as of February 16 of this year (see final page).

We previously reported that eight emails we did receive from EOHHS in August, based on a separate Public Records Request, showed a consensus in that agency to reduce public reporting of testing data in the human services system.

EOHHS’s lack of commitment to keeping the public informed about the impact of COVID-19 on the DDS system is disturbing. It is also concerning that EOHHS was apparently not in favor for five months of mandatory testing of staff for the virus.

The lack of such testing potentially exposed thousands of residents of DDS facilities to infection. Had mandatory staff testing occurred earlier, an untold number of COVID cases among residents and staff in the system may have been prevented.

 

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