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DDS corporate providers and their allies once again attack the former Fernald Center with a selective account of its history
Yet again, the former Fernald Developmental Center in Waltham is being targeted politically by corporate human services providers that are selectively focusing on the Center’s dark history prior to the 1980s.
Fernald may have been closed for the past seven years, but it is still proving to be as potent a target as ever for proponents of the privatization of care in the Department of Developmental Services (DDS) system.
As was the case last year, the Arc of Massachusetts and other provider-based groups have signed a petition and letter to Waltham Mayor Jeanette McCarthy, protesting an annual holiday light show currently underway on the Fernald campus.
This year, the providers have been joined by the Mental Health Legal Advisors Committee (MHLAC), a legal advocacy entity located within the state Supreme Judicial Court.
Philip Kassel (no relation to this blog post writer), executive director of the MHLAC, wrote a letter on December 10 to a legislative commission on the status of persons with disabilities in which Kassel joined in the criticism of the light show as “disturbing and inappropriate.” Kassel described Fernald as as a place of “horrors” and “virulent dehumanization.”
Kassel’s letter further stated:
…residents with disabilities (at Fernald) were subjected to “scientific” experiments and other forms of physical and psychological abuse. Walter Fernald himself was a proponent of eugenics and forced sterilizations, which occurred at the institution. Students were fed radioactive oatmeal by esteemed Harvard and MIT professors in what they called research. And innocents were imprisoned in squalid conditions for much of their unhappy lives.
These things either occurred or were true of Fernald prior to the 1980s. But, as I stated in an emailed response to Kassel on December 16, significant changes were brought about at Fernald and in other institutions for persons with developmental disabilities from the 1980s onward. Those changes occurred as a result of class action litigation in the 1970s, which was overseen by the late U.S. District Court Judge Joseph L. Tauro.
Judge Tauro enabled the creation of a new model of care in both the institutions and the community system in Massachusetts that required the investment of hundreds of millions of dollars. After years of improvements, Tauro concluded in 1993 that this state now had “a system of care and habilitation that is probably second to none anywhere in the world.”
There is no mention in Kassel’s letter of Judge Tauro or of the changes he oversaw at Fernald and at other institutions for persons with developmental disabilities. There is similarly no mention of Tauro or those changes in the petition or letter to Mayor McCarthy.
I also noted in my message to Kassel that the experiments at Fernald on children that he referred to took place between 1946 and 1953. It is, of course, necessary to know and understand that awful period in the history of institutional care of the developmentally disabled in this country.
But, as I stated to Kassel, “focusing public attention solely on the history of Fernald from the 1940s through the 1960s, and even before that, overlooks the full history of Fernald.”
That selective focus, I noted, also overlooks the human price paid for deinstitutionalization from the 1980s onward of both persons with developmental disabilities and mental illness. That is because such a selective focus diverts discussion and inquiry from events that happened subsequent to the 1980s and from current matters affecting people with disabilities.
That is an erasure of history, I said in my message, and its effect has been the facilitation of the ongoing and unchecked privatization of care in the DDS system, in particular.
In a response to my message, Kassel said he disagreed that the reforms at Fernald from the 1908s onward should necessarily be considered in discussing “the sordid history” of the institution.
Kassel said he also disagrees with our assessment of the history of deinstitutionalization. “If there are failures (with deinstitutionalization),” he stated, “they may be attributed to inadequate efforts to replace places like Fernald with community-based alternatives.”
In a response to Kassel’s response, I said we agree that the efforts to replace Fernald and other institutions with community-based alternatives have been inadequate. I noted that 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 DDS system had increased 30 percent in the previous five years, and had reached epidemic proportions.
Alterio’s testimony came long after the state had begun to rely primarily on privatized, community-based group homes for residential care of persons with developmental disabilities, and long after the state had phased out and closed all but two state-run developmental centers comparable to Fernald.
So, in our view, I said, deinstitutionalization of people with developmental disabilities has been far from a success. And that failure hasn’t been due to a lack of funding. DDS’s corporate provider-run group home line item in the state budget (5920-2000) is now well over $1.3 billion — an amount that is 90 percent higher than what it was a decade earlier.
I added in my second response to Kassel that rather than investing that increased funding over the years in adequate wages and training of direct-care workers in the community-based system, the providers have enriched their own executives. In a survey we conducted in 2015, we found that more than 600 executives of providers in the DDS system in the state were receiving some $100 million a year in salaries and other compensation.
In fact, decades after closures have occurred of a significant portion of the institutional system for people with developmental disabilities around the country, it is now in community-based group home settings that abuse, neglect, and warehouse-like conditions appear to have become a problem of epidemic proportions. (See these multi-part exposes starting in 2011 by The New York Times, in 2013 by The Hartford Courant, and in 2016 by The Chicago Tribune.)
Our concerns remain over proposed commission on history of Fernald and other state facilities
Meanwhile, as the debate continues over the Fernald light show, legislation is pending in the Legislature that would establish a state commission (S.1257and H. 2090) to study the history of Fernald and other similar institutions. We are seeking changes in the language of the bill to ensure that the commission tells the accurate and complete story of those places.
I said to Kassel that we assume that the Mental Health Legal Advisors Committee supports this legislation, and we would hope the organization similarly desires that the story of Fernald be told accurately and completely.
In our view, the effort to revoke the permit for the light show at Fernald simply serves the purpose of those who have a vested interest in overlooking Fernald’s complete history.
DDS denial of our request for records could indicate plans exist to close state-operated group homes
In a move that may indicate plans are in the works to consolidate or close state-operated group homes in Massachusetts, the Department of Developmental Services (DDS) has denied our request for internal records concerning such plans.
In a December 13 response to our request for the records, DDS said the documents are exempt from disclosure under the state’s Public Records Law because the records relate to an “ongoing or evolving policy matter.”
At issue are eight internal emails that DDS said are responsive to our records request.
We think the fact that DDS cited that Public Records Law exemption for evolving policy matters could be an indication that the Department is developing a new policy regarding the future of its state-operated group home network. We are concerned such a policy might not be good news for those facilities; however, any documentation that might shed light on that is now being withheld.
We first asked DDS on October 15 for any and all internal records, generated since September, that concern closures or consolidations of DDS state-operated group homes due to unvaccinated staff for COVID or for other reasons.
In mid-October, we received a report from a COFAR member that up to seven state-run homes in the southeastern region of the state had been closed because staff in them had not been vaccinated. Later that month, we heard that a state-run group home in western Massachusetts was being closed and that at least one of the residents there was moved without written notice to a location in another town.
In August, Governor Baker issued an executive order requiring all state employees to be vaccinated by October 17 or ultimately be terminated.
In October, we reported that we were growing increasingly concerned that the critically important state-run DDS group home network could be facing a crisis that could threaten its long-term existence.
We often advise families whose loved ones are experiencing poor care in provider-run residences to ask for placements in available state-run group homes. Staff in the state-run network generally receive higher pay and benefits and more training than their counterparts in the provider system.
DDS initially was going to charge $1,000 fee for the records
In an initial response to our public records request on October 29, DDS stated that there were potentially 1,600 responsive emails, and that producing the documents would require us to pay a $1,000 fee.
In a Nov. 9 phone call, I talked with Brian Fleming, the DDS associate general counsel and records access officer, about narrowing our request.
In his December 13 written response to us, Fleming said the narrowed search had turned up a total of 190 emails, and that eight of those were determined to be responsive to our request. However, he said that all eight of those emails were being withheld because they relate to the Public Records exemption for “interagency or intra-agency memoranda or letters relating to policy positions being developed by the agency.”
Fleming said the Governor’s Executive Order requiring all executive branch employees to be vaccinated “is an ongoing and evolving policy matter which is subject to the deliberative exemption.”
Fleming said that in addition, an unspecified number of emails were being withheld on the basis of attorney-client privilege. He provided a log of 10 emails that he said were subject to that latter exemption.
Appeal unlikely to be successful
Unfortunately, it has been our experience that if DDS cites the evolving policy exemption or the attorney-client exemption, we would probably lose any appeal for the records that we might file with the state Supervisor of Public Records. We believe the Supervisor would claim an inability to determine whether an internal departmental policy is settled or evolving. Similarly, it is unlikely that the Supervisor would dispute a departmental claim of attorney-client privilege.
A pattern of withholding information
With this latest denial of our Public Records Request, we once agan find ourselves in the position of having to speculate as to what DDS’s plans are regarding the immediate and long-term future of care in the system.
In this case, we had initially emailed DDS Commissioner Jane Ryder and the press office at the Executive Office of Health and Human Services (EOHHS) on October 14 with questions about the reports of closures and consolidations in the state-operated group home network.
To date, Ryder has not responded to our query. A spokesperson for EOHHS said in a response to our email that we would have to file a Public Records Request for that information.
On October 15, we filed that Public Records Request with both DDS and EOHHS. EOHHS responded that same day that that agency did not have any records relevant to our query. And on December 13, DDS responded, as noted, that the records it has are exempt from disclosure.
As we’ve said many times, we think the secrecy practiced by the administration over DDS matters, in particular, is unnecessary and does not foster trust in government by the public. The administration has the discretion to be transparent about its plans and policies. It should consider doing so.
Governor signs bill to distribute federal money for direct-care worker pay, but there is still no distribution timeline set
Gov. Charlie Baker on Monday signed legislation that would target hundreds of millions of dollars for human services workforce retention and recruitment as part of a $4 billion federal and state spending package.
According to the State House News Service, the governor signed the bill (H. 4269), which earmarks both federal American Rescue Plan Act (ARPA) money and surplus state revenues for immediate needs. The bill also preserves some $2.3 billion in federal ARPA funds for future use.
There is still, however, apparently no clear timeline for distributing the funding to boost wages of direct-care and other staff in the Department of Developmental Services (DDS) system.
As of November 29, Shannon Guenette, executive director of Almadan, Inc., a DDS provider, told COFAR she still hadn’t seen any of the federal stimulus money even though Congress and the Biden administration had released $8.7 billion in federal stimulus funds to Massachusetts last March.
Guenette first told us in August that her agency and other DDS providers throughout the state desperately needed the additional federal funding to retain workers in light of a worsening shortage of direct-care and clinical staff.
The state Legislature finally voted on December 3 to enact the $4 billion bill and send it to Baker’s desk. The vote came after the House and Senate had failed to reach agreement on the legislation before starting their legislative winter break.
Baker echoes our concern about advisory panel
In signing the legislation, Baker vetoed a section of the bill that would require that an advisory panel be formed and consulted before premium pay could be awarded to frontline employees.
Accordng to the State House News Service, Baker said he was concerned the advisory panel would create “red tape” that could delay distribution of the funding. “We would rather just put a premium pay program together and get the dollars out the door to people,” Baker reportedly said.
We previously raised this same point, noting that the advisory panel sounded like a potential recipe for further delay without necessarily providing a structure for ensuring that the funding goes to the workers.
Timeline still uncertain
But Baker’s veto also apparently has had the effect of eliminating a deadline of March 31, 2022, for the advisory panel to make its recommendations on the funding distribution.
According to the News Service, House Speaker Ron Mariano said Monday he had “requested a timeline from the administration on when they would be able to get the money out to essential workers so we can make an informed decision.” That decision apparently concerns whether and when to attempt to override the governor’s veto.
The News Service stated that in his veto, Baker wrote to lawmakers that he supports the premium pay program, but said the advisory panel was “virtually guaranteed to significantly hinder disbursement of the funds.”
The governor said his veto would allow his administration to “immediately begin the process of distributing these funds.”
“We could send out $500 checks to almost 1 million Massachusetts residents as soon as possible,” Baker wrote, according to the News Service. “Reinstituting the panel-driven process envisioned by the Legislature will simply disrupt the rollout midstream. We urge you to let our administration proceed with this important program today.”
We have raised other concerns about the state’s planned distribution of the federal funding as well.
Even when the ARPA money is finally distributed, we are concerned about a potentially low $2,000 ceiling set on the amount of funding per worker under the legislation. Also of concern is a lack of clear oversight of the distribution of the funding.
And it appears at least some of the funding is intended to be used to move residents out of the state’s two remaining developmental centers and into the already overburdened privatized group home system.
In sum, we’re happy that the bill to distribute the funding has finally been signed. But a half year after the federal money was sent to Massachusetts, it seems far from certain if and when those funds will get to the people the money is supposed to help.
Critically needed federal stimulus money still hasn’t come through for DDS residential providers facing staffing shortages
Shannon Guenette still hasn’t seen any of the money even though Congress and the Biden administration released $8.7 billion in federal stimulus funds to Massachusetts last March.
“We’ve received some guidance (from the state regarding the funding), but we haven’t received any additional funds,” Guenette, executive director of Almadan, Inc., said five days prior to Thanksgiving. Almadan is a group home provider in the western part of the state to the Department of Developmental Services (DDS).
In August, Guenette told us her agency and other DDS providers throughout the state desperately needed the additional federal funding to retain workers in light of a worsening shortage of direct-care and clinical staff.
The Baker administration in Massachusetts has targeted hundreds of millions of dollars of the federal American Rescue Plan Act (ARPA) funding for human services workforce retention and recruitment.
But the state Legislature took months to come up with its own plans for distributing the funding after at least one legislative leader said they didn’t see a need for hurry.
Earlier this month, state legislators went home for their Thanksgiving recess without having reconciled Senate and House bills (S.2564 and H.4234) that specify differing distribution plans for the money.
Meanwhile, other than noting there will be three rounds of ARPA funding distribution, the administration itself has provided little clear information about the details of its distribution plan such as how many workers and which agencies would receive the money, and how much of that funding would go toward higher wages.
Under the administration’s plan, the first round of funding was supposed to augment provider rates by 10% from last July through December of this year. But, as noted, no money has reportedly been distributed for residential programs.
Repeated queries by COFAR to DDS Commissioner Jane Ryder and to Health and Human Services Secretary Marylou Sudders about the DDS staffing shortage and how to address it have gone unanswered.
Even when the ARPA money is finally distributed, we are concerned about a potentially low limit set on the amount of funding per worker under the Senate and House bills. Also of concern is a lack of clear oversight of the distribution of the funding.
And it appears at least some of the funding is intended to be used to move residents out of the state’s two remaining developmental centers and into the already overburdened privatized group home system.
A $2,000 limit per worker
Language in both the Senate and House bills would limit funding for higher wages to $2,000 per worker. It’s not clear how effective such a payment would be in recruiting and retaining workers, particularly if it is only a one-time payment.
The Senate bill would also establish an advisory panel to make recommendations to the administration regarding the “Essential Employee Premium Pay Program.” The panel’s report is due with its recommendations by March 31, 2022.
The advisory panel sounds like a potential recipe for further delay without necessarily providing a structure for ensuring that the funding goes to the workers.
The distribution of funding to workers may not have sufficient oversight
Information posted online by the administration requires DDS providers to attest or essentially promise that 90% of the additional ARPA funding they receive will be used for “compensation for their direct-care workforce.” That could include, “among other things,” hiring and retention bonuses.
While the providers will be required to submit spending reports, it isn’t clear that the administration has dedicated sufficient resources to auditing such reports and ensuring that the money is going in all cases to front-line staff.
State Auditor Suzanne Bump’s office reported in 2019 that increases in state funding to DDS and other providers resulted in surplus revenues for the providers, but that those additional revenues led to minimal increases in wages for direct-care workers.
According to Bump’s audit, while the increased state funding was at least partly intended to boost direct-care wages, it “likely did not have any material effect on improving the financial well-being of these direct-care workers.”
Some ARPA funding may be used to “divert” residents from developmental centers
According to the administration’s distribution plan, at least $44 million of the ARPA funding will be used starting in Round 2 to “divert” clients “towards community living … and away from facility-based settings.”
We are concerned that while at least some of this funding would reportedly be used to prevent the inappropriate placement of DDS clients in hospitals or nursing homes, a portion of the funding may be used to further reduce the population of facilities such as the Wrentham and Hogan developmental centers. As such, this funding would only further reduce choices in residential care for DDS clients.
The residential population at both Wrentham and Hogan have been declining in recent years, and admissions to both facilities were zero in 2020.
Providers cite need for funding and higher pay for direct-care workers
In September, a provider-based “Collaborative” provided written testimony to the state Legislature’s Ways and Means Committee chairs seeking $174 million per year for five years in ARPA funding for human services organizations. The money was being sought “to provide recruitment and retention incentives to workers to help combat the workforce crisis in the sector.”
The Provider Collaborative testimony said the $174 million would affect about 34,800 staff earning less than $60,000, and nurses and clinicians earning less than $90,000.
The Collaborative noted that low wages paid to direct-care workers are a problem. “The low rates of pay for direct-care staff… coupled with complex, difficult jobs have led providers to struggle with recruiting and retaining workers even before the COVID-19 pandemic impacted programs,” the testimony stated.
The Collaborative blamed those low wages on the state’s “rate-setting process.” We think, however, that many providers, as the state auditor noted, could afford to pay more to their workers.
Shannon Guenette told us that Almadan is currently only able to pay its staff $15.25 an hour. The Collaborative stated that the median salary for direct-care workers is $16.79 an hour. According to the Collaborative, the MIT Living Wage calculator notes a living wage for a single person in the area is $17.74 an hour.
All of this points to the need for quick action to distribute the ARPA funding. It’s unfortunate that legislative leaders don’t appear to recognize that there is, and has been, a need for hurry. There is also a need for effective oversight of the funding to make sure it gets to those workers.
Family doctor opposes DDS’s continuing effort to remove mother as co-guardian of her son
The primary care doctor for the past eight years of a man with an intellectual disability is voicing opposition to a continuing effort by the state to remove the man’s mother as his co-guardian.
For more than a year, the Department of Developmental Services (DDS) has, for unclear reasons, been seeking the removal in probate court of Cindy Alemesis as co-guardian of her son Nick. That is despite the fact that Cindy appears to have saved her son’s life in 2018.
In a letter intended to be submitted to the probate court, Zaheer Ahmed, a doctor of internal medicine based in Lowell, said he has “witnessed how Cindy cares for Nicholas over the years.
“She (Cindy) is very active in his care, concerned for his well-being, makes sure he does not miss medical appointments, and has always acted in the best interest of her son,” Dr. Ahmed wrote in the letter, dated November 9. He added, “I am confident that removing Cindy as co-guardian of her son will not be in the best interest of Nicholas.”
Cindy was the first to notice how ill her son was in December 2018, and got him to a hospital for lifesaving treatment after his group home staff missed a critical medical appointment for him with Dr. Ahmed.
Nick, who is 29, has a mild intellectual disability, and was born with hydrocephalus, a condition in which there is excess spinal fluid in his brain. He has a shunt in his brain that drains the fluid.
Staff in Nick’s group home in Dracut failed to take him for a scheduled morning ultrasound appointment with Dr. Ahmed on December 19 of 2018. The ultrasound would likely have shown that Nick’s brain shunt was leaking spinal fluid into his stomach.
DDS’s only stated reason in its petition for Cindy’s removal, which was filed in October 2020, was that she had made decisions that were not in her son’s best interest. The Department’s petition did not say what those decisions were.
Nick and his mother, Cindy Alemesis
Eight months at Mass. General Hospital
In a previous letter, which Dr. Ahmed wrote following Nick’s hospitalization in 2018, he stated that he had examined Nick on December 17 of that year, two days before Nick fell ill.
During the December 17, 2018, visit, Dr. Ahmed scheduled an ultrasound of Nick’s abdomen for two days later — December 19 at 10 a.m. Dr. Ahmed’s letter added that, “the patient and care worker were both informed of (the) appointment before leaving the office on that date.” However, Dr. Ahmed said Nick didn’t show up for the December 19 appointment, and the ultrasound had to be rescheduled for December 21.
However, Nick fell ill during a church service in the evening of December 19. During the ride back home in a church van, Cindy insisted that Nick be taken to Lowell General Hospital. There, doctors found that the shunt was leaking spinal fluid into his body. Cindy didn’t know at the time that the ultrasound appointment had been missed.
Nick got sepsis from the leaked fluid, and was transferred to Mass. General Hospital. He remained there for eight months during which he underwent multiple brain operations and other procedures. Cindy was at his bedside for much of that time.
Staff missed medical appointments
After Nick’s recovery and release from the hospital in July 2019, Cindy regularly complained that staff in the group home, run by LifeLinks, a provider to DDS, were continuing to miss medical and dental appointments for him.
In his November 9 letter in the case, Dr. Ahmed stated that “Nicholas has missed doctors appointments. Cindy notices the missed appointments and advocates for her son.”
Cindy filed a complaint in October 2020 with the Disabled Persons Protection Commisson (DPPC), alleging that the group home was continuing to miss medical appoints for her son. But DPPC screened out that complaint as ineligible for an abuse investigation, and instead referred it to DDS for an “administrative review.”
The DPPC intake form stated that Cindy’s complaint was screened out because Nick had not suffered a serious physical or emotional injury. However, that same DPPC intake report acknowledged that one of the alleged missed appointments had led to Nick’s hospitalization for eight months.
Cindy said that during the past year, her contact with her son has remained sharply restricted by DDS and the provider.
DDS guardianship removal petition raises question of retaliation
In 2019, Cindy had sought to remove the other appointed co-guardian for Nick. That co-guardian is paid by DDS, according to DDS records. Cindy maintains that the other co-guardian has been uninvolved in Nick’s care and lives in Florda. Cindy’s effort in court to remove the other co-guardian was unsuccessful.
That previous court battle, however, raises a question whether the current effort by DDS to remove Cindy as co-guardian is being done in retaliation.
A pre-trial conference in the case has been scheduled for December 15 by Probate Court Judge Melanie Gargas.
We are continuing to advocate on behalf of Cindy, and we intend to join with Dr. Ahmed in stating to Judge Gargas that Cindy has always acted in her son’s best interest and should not be removed as his co-guardian.
As we have noted in the past, this case fits a pattern in which DDS and providers have taken a variety of punitive and retaliatory actions against family members and guardians when they are seen as troublesome or meddlesome in advocating for adequate care for their loved ones in the system.
It is unfortunate that DDS has dragged out this case as long as it has. The Department’s effort to remove Cindy as her son’s guardian and the restrictions placed on her contact with her son have placed unimaginable stress on her. Those restrictions have also hampered Cindy’s efforts to advocate for the best possible care for Nick.
We urge DDS to drop its effort to push Cindy out of her son’s life, and to begin to work with Cindy to rectify the problems she has identified with her son’s care in his group home.
DDS state-operated group homes facing a staffing and possible closure crisis
State-operated group homes for persons in Massachusetts with developmental disabilities appear to be facing a perfect storm of staffing shortages, potentially unvaccinated staff, and a possible departmental effort to shut at least some of the residences down.
The staffing shortages are also affecting the much larger network in the state of corporate provider-operated group homes funded by the Department of Developmental Services (DDS). But we are increasingly concerned that the critically important state-run DDS group home network could be facing a crisis that could threaten its long-term existence.
We often advise families whose loved ones are experiencing poor care in provider-run residences to ask for placements in available state-run group homes. Staff in the state-run network generally receive higher pay and benefits and more training than their counterparts in the provider system.
Resident moved without notice
This week, we received a report that a state-run group home in western Massachusetts was being closed and that at least one of the residents was moved without written notice as of Thursday (October 21) to a location in another town.
Earlier this month and this week, we received reports from a COFAR member that up to seven state-run homes in the southeastern region of the state had been closed because staff in them had not been vaccinated for COVID-19.
We have not been able to confirm those reports about closures of homes in southeastern Massachusetts. A DDS official privately told a COFAR member that no state-operated group homes had yet been closed in the region as of mid-October, but that some closures could happen after October 17. The official referred to the possibility of “temporary consolidations” of group homes around the state.
In August, Governor Baker issued an executive order requiring all state employees to be vaccinated by October 17 or ultimately be terminated. While the executive order apparently applies to staff in state-operated group homes and the Wrentham and Hogan Developmental Centers, the separate provider-operated DDS group home system is apparently not subject to the vaccination mandate.
It is not clear how many staff in the DDS group home system remain unvaccinated. As of last April, the last time EOHHS apparently tracked staff vaccinations, less than 50% of staff in state-operated DDS group homes were fully vaccinated, and only 51% of staff in provider-run group homes were fully vaccinated.
Administration officials not commenting
On October 14, we emailed DDS Commissioner Jane Ryder and the press office at the Executive Office of Health and Human Services (EOHHS) with questions about the reports of closures and consolidations in the state-operated group home network.
To date, Ryder has not responded to our query. A spokesperson for EOHHS said we would have to file a Public Records Request for that information. On October 15, we filed a Public Records Request, and EOHHS responded that same day that that agency did not have any records relevant to our query.
DDS regulations may be violated by sudden closures
Under DDS regulations (115 CMR 6.63), DDS clients cannot be transferred without a 45-day notice and the opportunity for a hearing unless the the Department determines that the transfer is “an emergency involving a serious or immediate threat to the health or safety of the individual or others.”
Western Mass DDS staff urge Ryder to address staffing shortages
Meanwhile, on Wednesday (October 20), the Massachusetts Nurses Association, a union that represents nurses in the DDS system as well as hospitals around the state, reported that several DDS employees in western Massachusetts had sent a letter in late September to Commissioner Ryder “imploring her to intervene in a growing patient-care crisis that is unfolding in many of the region’s DDS group homes.”
The letter stated that staffing shortages in both state-operated and provider-operated group homes were causing “significant increases” in client injuries requiring emergency room treatment, and in the placement of untrained staff in homes.
The MNA letter said some staff were being forced to work overtime due to staffing vacancies, and that one staff worker was reportedly required to work 48 hours straight.
The MNA letter to Ryder was dated September 21. The union said that as of October 20, Ryder had not responded.
COVID rates in the DDS group home system continuing to climb slowly
In the midst of the continuing staffing and apparent vaccination problems, the latest online COVID testing report from EOHHS shows a slow, but continuing increase in individuals testing positive in DDS state and provider-run group homes. In state-operated group homes, the number of residents testing positive rose from 3 to 6.
Among staff in the state-operated group homes, the number of those testing positive rose from 11 to 12 between September 7 and October 5.
In provider-run homes, the number of residents testing positive jumped from 31 in September to 49 in early October. The administration, however, does not report the number of staff testing positive in the DDS provider-run system.
Census in state-ops and ICFs declining
Whether or not there are plans to close state-operated group homes or the Wrentham or Hogan Developmental Centers, the administration has nevertheless been letting the residential populations or census drop in these facilities. In addition, funding for these facilities has dropped or has remained flat for years. (See here and here.)
Documents provided by DDS on September 21 in response to a Public Records Request for records on the number of admissions to state-operated group homes, confirm that the census in those facilities has been declining since Fiscal Year 2015. We previously received information from DDS showing a decline in the census and virtually zero admissions in 2019 and 2020 at the Wrentham and Hogan Centers.
The census in DDS provider-operated group homes grew by an average of 124 residents per year between Fiscal Years 2008 and 2021. However, the census in state-operated group homes grew by an average of only 3 residents per year.
Moreover, since Fiscal 2015, the census in state-operated group homes has actually dropped by an average of 18 residents per year while the census in provider-operated group homes has continued to grow by an average of 83 residents per year. The number of residents in state-run group homes was almost 10% lower in Fiscal 2021 than in 2015.
The data show there have been admissions each year to the state-operated homes. But those admissions have apparently been more than offset by deaths in those residences.
Future is concerning
In sum, all of these numbers and trends are concerning, as is the administration’s policy not to respond to questions either from us or from unions such as the Mass. Nurses Association.
We may learn a little more if DDS does provide records relevant to our Public Records Request concerning the reported state-operated group home closures. But in the meantime, we are left to wonder what the administration is planning to do – or is actually doing — to address the staffing shortages in the DDS system.
At the very least, we hope the administration doesn’t view the staffing shortages and the problem of unvaccinated staff as opportunities to further downsize the state-operated group home system.
Video has a controversial and disturbing, but important message about autism
Several advocacy organizations for people with autism have produced a disturbing video that conveys an important message.
The message, which is actually controversial, is that autism can be a debilitating condition for some people. Contrary to what has become a politically popular ideology, there are people with developmental disabilities who cannot function in mainstream society.
The video, sponsored by Act Now for Severe Autism, the VOR, the National Council on Severe Autism (NCSA), ICF Advocates for Choice, and other organizations, displays severe autistic behavior in graphic detail, and therefore may be difficult for some people to watch.
Many people, however, may not be aware that autism is a “spectrum disorder,” which the Autism Research Institute (ARI) describes as appearing “in a range of forms and levels of severity.”
The video shows children with very severe autism engaging in violent behavior, mainly against themselves. They scream and hit themselves repeatedly in the head, or bang their heads against hard objects – hard enough to cause serious injuries such as detached retinas. They physically attack caregivers and family members, leaving them injured as well.
It is difficult to watch, but videos like this are necessary to convey an inconvenient truth about developmental disabilities to the public and to policy makers and journalists, and even to misguided activists for the disabled. Many of these policy makers and activists have promoted the mistaken ideology that every individual has unlimited potential for achievement in mainstream society, and that autism is not even a disability.
As the NCSA stated in a letter to The New York Times, this viewpoint even led one author to advise parents of children with autism that their children are “perfect.”
And as noted below, this ideology has been associated with the closure and privatization of congregate care facilities for persons with developmental disabilities and with efforts to end guardianship of those persons by family members.
But as Lee Elizabeth Wachtel, medical director of the Neurobehavioral Unit at the Kennedy Krieger Institute, wrote:
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.
What the video is getting at, in our view, is the importance of distinguishing between different degrees of disability in setting policy for people with disabilities.
We think the failure to make those distinctions is what is in common among the movements to further deinstitutionalize and privatize services to the disabled, end guardianship, and close sheltered workshops, among other programs and services.
Those movements have had a major impact, causing policy makers and the media to overlook the needs and, in some cases, even the existence of people with the most severe levels of autism and other disabilities.
Attacks on guardianship
The failure to recognize different levels of disability is behind a growing movement to replace guardianship with Supported Decision Making (SDM). SDM is an arrangement in which individual guardians are replaced by teams or “network supporters,” who enter into written agreements with disabled individuals to “help them make decisions” about their care, finances, and living arrangements, and in other areas.
In typical fashion, SDM bills currently pending in the Massachusetts Legislature (H.272 and S.124) avoid the question whether everyone is really capable of making their own decisions in those very important areas. SDM proponents don’t appear to recognize that there are some individuals who do not have the cognitive skills necessary to make reasonable decisions. Those people need guardians – preferably guardians who are family members.
It should be clear from the video on severe autism behaviors that the children engaging in those self-injurious actions are not in a position, and may never be in a position, to be able to make their own life choices.
Yet one of those SDM- promoting groups – the Autistic Self-Advocacy Network – states on its website that:
People with disabilities usually get put under guardianship because other people think we can’t make choices. This is bad. People with disabilities want to keep the right to make our own choices.
Integrated employment
The ideology that everyone can function in mainstream society led to the closures of all remaining sheltered workshops in the state in 2016.
The charge was that the workshops limited the potential of the clients by keeping them out of the mainstream workforce. But the result has been that hundreds if not thousands of clients of the Department of Developmental Services (DDS) have been left in DDS day programs with little or nothing to replace the work opportunities they previously had.
For a potentially significant number of DDS clients, mainstream work settings have never been a viable option. Those persons aren’t able to function in those settings or don’t desire to do so.
It’s all about money and privatization
The ideological position that the community-based 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, all persons with developmental disabilities can reach their full potential in the community system, unlimited by institutional constraints.
But as the video narrator notes, people with severe autism need “a continuum of care that includes intensive and specialized services that are usually provided in disability-specific educational, vocational, and residential settings.”
As the narrator says, parents of persons with severe autism are looking for a “seat at the table” when it comes to setting policy for caring for persons with developmental disabilities. They want policy makers to recognize that given the wide range in the severity of autism and other developmental disabilities, one-sized policies don’t fit all.
Time to end virtual legal immunity for DDS nonprofit providers
Under a state law that is now a half century old, corporate providers to the Department of Developmental Services (DDS) can’t be sued for more than a nominal amount of money even if they are found to be responsible for serious instances of abuse or neglect of their clients.
We think it’s time to change or end the Charitable Immunity Law (M.G.L. c. 231 Section 85K), under which the legal liability of nonprofit organizations in Massachusetts is limited to a maximum of $20,000 in most cases. Very few attorneys will even consider representing clients in cases in which such a low level of allowable damages is allowed.
This situation has contributed to the overall poor quality of care and conditions that is frequently found in group homes in the DDS system.
By way of disclosure, Thomas Frain, COFAR’s president, is an attorney who represents DDS clients. He maintains that raising or eliminating the $20,000 cap would provide an avenue of redress for those clients and their families that isn’t currently available.
“The 300 companies contracting with DDS to care for people with developmental disabilities should be held accountable just like everybody else,” Frain said. “There was a time that these charities got by with bake sales, can drives and private benevolence; but no more. The executives are handsomely paid and should be called to task when they inflict or ignore suffering.”
While states have different standards regarding charitable immunity, Massachusetts is one of the few states left with a charitable immunity statute that imposes such a low cap on liability, Frain said.
We think the $20,000 cap needs either to be significantly raised or eliminated entirely. We support the intent of H.1599, a bill which would eliminate the cap.
Legislation similar to H.1599 has been proposed for many years in the state Legislature. The bill is currently in the Judiciary Committee.
In testimony that we submitted last week to the Judiciary Committee, we noted that unless the chariable immunity cap is raised or eliminated, egregious cases of neglect by nonprofits in the DDS system will continue to go virtually unpunished, creating an enormous accountability problem.
Tommy Shea case
In one case we have blogged about, Maureen Shea’s son, Tommy, who was 33, had an intellectual disability and was subject to epileptic seizures while asleep.
Tommy’s bedroom in his staffed apartment was equipped with an audio and visual monitor that could alert the staff so that the staff could make sure that during a seizure he didn’t roll over face-down — a position that can prevent breathing.
Maureen and her daughters were nevertheless concerned that the residential staff did not regularly check the monitor’s batteries, and that they had not been adequately trained in how to position the device. But the nonprofit provider that employed the staff had repeatedly assured Maureen that the staff were trained and were knowledgeable about Tommy’s medical equipment.
In June, 2017, Tommy was found dead, face-down on his bed. The batteries in the monitor were later found to be dead.
We think Maureen should have the right to sue the provider that failed to take promised measues that would have kept her son alive.
Nick Alemesis case
In another case we wrote about late last year, staff in a DDS corporate provider-run group home in Dracut failed to take Nick Alemesis, a resident of the home, for a scheduled morning ultrasound appointment, which would have shown that his brain shunt was leaking spinal fluid.
Just hours after the scheduled time for the appointment, Nick’s mother, Cindy, first noticed how ill Nick appeared. She had him taken to a hospital where doctors found that the shunt was leaking spinal fluid into his body.
Nick got sepsis from the leaked fluid, and was in Massachusetts General for eight months, during which he underwent multiple brain operations and other procedures. Cindy was at his bedside for much of that time.
There has been zero accountability in that case. DDS and the Disabled Persons Protection Commission (DPPC) declined even to undertake an investigation in that case. Not only does Cindy not have the ability to sue the provider for an amount over $20,000, but DDS has subsequently moved in probate court for unclear reasons to remove Cindy as co-guardian of her son.
The cap history and its aftermath
The charitable immunity law in Massachusetts goes back to the 1870s when the state Supreme Judicial Court ruled that a public hospital could not be held liable for an injury to an individual in the hospital’s care.
The SJC reversed its position in the 1969 case of Colby v. Carney Hospital, leading to the enactment by the Legislature of the current Charitable Immunity statute in 1971. Despite the specification of a $20,000 cap under the law, most nonprofit organizations today carry insurance that could cover them for much higher damages.
As Attorney Jeffrey Beeler said to the Judiciary Committee, in testifying in favor of a bill to eliminate the Charitable Immunity Law in 2006, the $20,000 cap has resulted in a financial windfall for insurance companies. The statute has, at the same time, forced many injured plaintiffs to depend on Medicaid and other taxpayer-funded programs to pay for the treatment of their injuries.
Providers that purchase insurance are capable of paying much larger claims than the $20,000 stipulated by the cap without being harmed financially. As Tom Frain noted, these providers are often able to pay hundreds of thousands of dollars per year to their executives.
In sum, we believe raising or eliminating the charitable immunity cap entirely is a necessary step in restoring accountability and equity to the system of care of persons with developmental disabilities in Massachusetts.
Baker administration leaves DDS staff out of COVID vaccination requirement
[UPDATE: We have received unofficial information that staff of DDS state-operated group homes and at the Wrentham and Hogan Developmental Centers are subject to the vaccine mandate. It appears those staff fall under an executive order last month applying to executive branch employees.
However, the much larger corporate provider-operated group home system does not appear to be subject to the vaccine mandate.
This new information contradicts what an EOHHS spokesperson told us (see post below), which was that no congregate care staff are subject to the vaccine mandate.]
Despite a recent uptick in the number of residents in the Department of Developmental Services (DDS) system who have tested positive for COVID, the Baker administration is not including DDS system staff in a new requirement that health care workers in Massachusetts be vaccinated.
Once again, it appears, people with intellectual and developmental disabilities are subject to looser COVID protections than are the elderly or people with other types of disabilities.
According to the State House New Service, the Baker administration this month announced plans to require COVID-19 vaccinations for all staff at rest homes, assisted living residences, hospice programs, and for home care workers providing in-home, direct care services.
The administration first imposed a vaccine requirement in August on employees of skilled nursing facilities.
Last week, a spokesperson for the Executive Office of Health and Human Services (EOHHS) told COFAR that the latest vaccine mandate does not include “congregate care” staff. We had specifically asked whether the mandate includes DDS-funded group homes, developmental centers, and day programs for persons with intellectual and developmental disabilities.
Although the EOHHS spokesperson didn’t directly answer our question, DDS congregate care facilities would appear to consist of both provider-run and state-operated group homes, which together serve some 9,000 residents and employ tens of thousands of staff. [See updated information above pertaining to state-operated group homes and the developmental centers.]
The EOHHS spokesperson also did not respond to our follow-up question why DDS staff have not been included included in the vaccine mandate. DDS Commissioner Jane Ryder did not respond to an initial inquiry on the matter that we sent her on September 8.
We have raised concerns for several months about unvaccinated staff in the DDS system. It is not clear how many DDS system staff remain unvaccinated.
As of last April, the last time EOHHS apparently tracked staff vaccinations, less than 50% of staff in state-operated DDS group homes were fully vaccinated, and only 51% of staff in provider-run grop homes were fully vaccinated.
Apparent concern over staffing shortage in the DDS system
Given the lack of information or comment from the administration, we are guessing the lack of a vaccine mandate for DDS is due to a staffing shortage, which may be more acute in the DDS system than in nursing homes. It would appear the administration is concerned that requring those staff to be vaccinated would make the shortage worse.
Home care providers in Massachusetts, in fact, are already predicting the vaccine mandate will drive many of those workers to other fields.
One solution, of course, would be to pay direct care workers on the DDS system enough to retain the current workforce and recruit new caregivers. As we’ve reported, federal and state funding exists to do this. But there appears to be no sense of urgency in the state Legislature to distribute the funding, and no effort there to ensure the money will go toward those workers.
Rising number of infected residents
As the State House News Service reported last week, despite the fact that more than 4.54 million people in Massachusetts are now fully vaccinated, COVID continues to spread, apparently driven by the more infectious Delta variant.
The last two online COVID testing reports from EOHHS for congregate care facilities show an increase in residents testing positive in DDS provider-run group homes.
After declining dramatically from a high of almost 250 positive residents in January of this year to virtually zero in June and early July, there were 31 residents listed as positive in provider-run group homes as of this past week’s report (Sept. 7).
The positive COVID rate among provider-run group home residents in the DDS system had started to rise as of the August 10 EOHHS report.
EOHHS reports on COVID rates in DDS and other congregate care facilities are now provided once a month. EOHHS does not report specifically on the number of COVID-positive staff in provider-run group homes.
Importance of vaccinations of staff emphasized
The State House News Service quoted Tara Gregorio, president of the Massachusetts Senior Care Association, as stating that the administration’s vaccine mandates “will create parity, transparency, and accountability within the entire health care system, which is ultimately to the benefit of consumers and their caregivers.”
But parity, in particular, will not fully be achieved throughout the entire health and human services system if DDS staff are left out of the vaccine mandates. DDS manages a budget of more than $2 billion — the largest budget of any line agency in the EOHHS system.
We hope it finally begins to dawn on both legislators and the administration that DDS needs to be included in the staff vaccination mandates, and that those workers need to be paid enough to keep them from leaving the system.
The Britney Spears case is wrongly being used to attack guardianships of persons with developmental disabilities
In a recent article published in CommonWealth magazine, we discuss the misguided use by many activists of Britney Spears’ controversial guardianship case to discredit guardianship arrangements in general.
As we point out in our article, guardianship is under attack, and the Britney Spears case is wrongly being used to imply that all guardianship arrangements are abusive or exploitative.
We think Spears’ experience is also being used to advocate for legislation that could make it more difficult for family members to become or remain as guardians of persons with intellectual and developmental disabilities (I/DD). In our experience, family members need to have guardianship to ensure they are consulted in the delivery of care and services to their loved ones.
But former Massachusetts Attorney General Scott Harshbarger and former Secretary of Elder Affairs Paul Lanzikos appear to be using the Spears case to push for bills that might limit those family guardianship rights. Citing Spears’ case, Harshbarger and Lanzikos have proposed legislation to create a Massachusetts Office of Adult Decisional Support Services (H.1898 and S.974).
The functions of the Office, as listed in the legislation, are vague; but Harshbarger’s and Lanzikos’s own statements in a separate piece in CommonWealth raise concerns for us about what their proposed Office might be tasked to do.
Harshbarger and Lanzikos wrote that the Office would “improve oversight and best-practices in guardianship and conservatorship, as well as support alternatives to guardianship—such as supported decision-making—statewide” (my emphasis). More about Supported Decision-Making in a moment.
We certainly agree that there are compelling questions as to why someone like Britney Spears remains under guardianship, also known in some states as conservatorship. She is a multi-talented singer, songwriter, dancer, and actress who appears to be involuntarily trapped under the guardianship of her father. She appears to be cognitively normal and capable of making her own life choices.
But not all guardianship arrangements are like Spears’ relationship with her father, and not all persons under guardianship are capable of making their own life choices. Yet that is one of a number of distinctions that appear to be lost or glossed over in Harshbarger’s and Lanzikos’s piece.
Harshbarger and Lanzikos aren’t the only ones using the Spears case in this manner. Activitists around the country and even some members of Congress are using Spears’ experience to attack guardianship.
Supported Decision-Making needs safeguards
Supported Decision-Making (SDM) is an arrangement in which individual guardians are replaced by teams or “network supporters,” who enter into written agreements with disabled individuals to help them make decisions about their care, finances, and living arrangements, and in other areas. SDM proponents maintain that guardianship unduly restricts the rights of disabled individuals to make those decisions.
We think SDM can hold promise for some high-functioning individuals; and we would support its adoption with adequate safeguards, particularly safeguards against the potential marginalization of family members.
The problem with proposed legislation to implement SDM in Massachusetts (H.272 and S.124) is that, as with earlier versions of the legislation, there appear to be few, if any, such safeguards in it. The bills still provide no standard for determining who might be eligible for SDM.
The SDM legislation continues to avoid the question whether everyone is really capable of making their own decisions in those very important areas. SDM proponents need to recognize that there are some individuals who do not have the cognitive skills necessary to make reasonable decisions. Those people need guardians – preferably guardians who are family members.
We are concerned that the creation of the Office of Adult Decisional Support Services may be a backdoor means of instituting SDM in Massachusetts as an “alternative” to guardianship.
As noted, the duties of the proposed Office of Adult Decisional Support Services are vague, and “decisional support services” are not even defined in the legislation. The Office would be tasked with “developing oversight and accountability procedures to prevent potential errors or abuses by decisional fiduciaries.” We think better oversight and more accountability are needed in the probate system; but it is unclear what the proposed Office would consider to be abuses.
We have identified what we think are abuses, including the incentives the probate court system in Massachusetts gives to professional guardians to acquire as many wards as possible while doing little to represent them. This raises another distinction that Harshbarger and Lanzikos appear to have failed to make.
Abuses primarily appear to lie with professional guardians
Harshbarger’s and Lanzikos wrote that they are trying “to raise public awareness around guardianship and conservatorship practices that were brought to light by the Spears case, and to provide systems to protect the rights of individuals from the risks of overreaching, or in isolated cases, outright abuse (by) guardians or conservators.”
In our experience, the overreaching that they refer to applies much more commonly to professionals hired to serve as guardians than it does to family members.
Professional guardians of persons with development disabilities are paid by the state Department of Developmental Services (DDS) — a situation that appears to interfere with the guardians’ legal obligation to act in the best interest of their disabled clients. Family members are not paid for serving as guardians of their loved ones.
We have found that professional guardians of disabled clients often have relatively few interactions with their clients, and frequently side with DDS when family members have gotten into disputes with the agency over the care of those clients.
Need for family rights bill
We think reform of the probate system in Massachusetts is needed, and a first step would be passage of H.1733, a bill which would require that probate court judges consider parents of individuals in the DDS system to be suitable guardians for them. In too many instances, DDS officials, clinicians, providers, and probate judges dismiss families as uninformed or meddlesome.
But we have seen time after time that it is family members who have their loved ones’ best interest at heart. Family members are often the ones most intimately knowledgeable about their physical and emotional conditions.
A serious discussion of guardianship reform is sorely needed. But, as we noted in our article, the proposal from Harshbarger and Lanzikos appears to be one-sided. Basing their proposal on the Britney Spears case is a key indication of that.
COFAR blog 