Archive
Abuse investigation agency faces ‘shameful’ shortfall in funding
A COFAR Special Report
Due to a chronic lack of funding and a maze of legal constraints, the state’s only independent agency charged with investigating abuse and neglect of disabled individuals is able to undertake less than 2 percent of such probes, according to data reviewed by COFAR.
The Disabled Persons Protection Commission’s data show that between fiscal years 2004 and 2014, the agency investigated an average of 101 cases each year, or 1.5 percent of the average number of abuse and neglect complaints investigated.
An average of 6,836 cases per year – or more than 98.5 percent of them – were assigned or referred to other agencies to investigate, with the Department of Developmental Services chief among them.
Source: DPPC
“The DPPC may have one of the most important missions of any agency in state government,” said COFAR Executive Director Colleen Lutkevich. “Yet, it is barely permitted to operate. It’s a shameful situation.”
The impact of the agency’s lack of adequate funding appears to have changed little since The COFAR Voice published an in-depth look at the agency in 2004. At that time, the newsletter noted that between 1999 and 2003, the number of agency personnel investigating abuse and neglect complaints had dropped, due to budget cuts, from seven investigators to three.
A follow-up review by COFAR this year of DPPC reports and budget documents shows that in the decade between fiscal 2004 and 2014, neither the governors involved nor the Legislature demonstrated a consistent commitment to the DPPC or its mission. In a number of years, the agency’s budget was cut, resulting in the need for layoffs of investigators and other personnel, despite rising caseloads.
Among the results of the lack of funding is that the DPPC has been able only to increase its investigative staff from three in 2004 to six currently; and some of those investigators have other duties and are not available to work on investigations full time, according to Emil DeRiggi, deputy executive director of the agency. The investigative staff actually appears to be smaller than it was in 1999, which seven investigators were employed.
The DPPC is the only state agency in Massachusetts whose mission is devoted exclusively to preventing and investigating abuse and neglect of disabled persons. Other agencies that undertake those investigations also employ or fund caregivers who provide a wide range of services to the same individuals. This appears to cause potential conflicts for those agencies by requiring them to investigate their own services.
According to DeRiggi, the DPPC maintains an oversight responsibility over investigations it assigns to other agencies. However, the DPPC’s lack of funding appears to limit its oversight capacity.
The DPPC’s oversight officers, whose job includes monitoring cases assigned to other agencies, have seen their caseloads rise steadily. As of fiscal 2004, there were seven oversight officers at the agency, according to the annual report for that year. As of fiscal 2014 – a decade later – the number of oversight officers had grown only by one, to eight. Yet the total number of abuse and neglect complaints called in to the DPPC in fiscal 2014 was more than 3,000 higher –or more than 50 percent greater – than the number in fiscal 2004.
Lack of statutory authority
The DPPC’s enabling statute (Massachusetts General Laws chapter 19C) permits the agency only to investigate cases involving victims between the ages of 18 and 59. As the DPPC’s website describes it, the agency “fills the gap” between the Department of Children and Families (which investigates abuse of children through the age of 17) and the Executive Office of Elder Affairs (which investigates abuse of persons over the age of 60).
This situation involving individuals with developmental disabilities is further complicated because the Elderly Affairs agency is prohibited by statute from investigating abuse cases involving elderly persons in long-term care facilities such as developmental centers and group homes. The result is that the Department of Developmental Services has become, by default, the only agency with authority to investigate complaints of abuse or neglect of individuals over the age of 60 with developmental disabilities living in those residential facilities. DDS, however, faces a conflict of interest because it is frequently in the position of investigating charges of abuse and neglect in facilities either run by its own staff or by contractors it funds.
Perry case illustrates need for an independent investigatory agency
The case of the 2013 death of Dennis Perry, an intellectually disabled man, at the Templeton Developmental Center, illustrates the need for abuse investigations to be conducted by independent agencies such as the DPPC.
Perry, who was 64, died in September 2013 after having been allegedly shoved into the side of a boiler at the developmental center’s dairy barn by Anthony Remillard, a resident of the center, who had a history of violent behavior. As COFAR noted in a blog post, the DPPC was prevented by statute from investigating Perry’s death because he was over 60. The Executive Office of Elder Affairs was similarly prevented from investigating the matter because it occurred in a long-term DDS care facility. The investigation, as a result, fell by default to DDS.
The DDS investigation report raised a number of questions about its thoroughness. The report and related correspondence, dated in August 2014, concluded that there was no evidence that the staff at the Templeton Center could have prevented Remillard’s alleged “spontaneous and unpredictable assault” on Perry.
The DDS report, however, appeared to have failed to address a number of key questions about the Perry case, including whether it was appropriate for Remillard to have been admitted to the Templeton Center in the first place, and whether the overall level of supervision at the Center or of Remillard himself was adequate. The report merely examined the actions of staff caring for Remillard in the moments prior to, and during, the alleged assault.
Recognizing the need for independence in investigating the abuse of all persons in DDS facilities, the DPPC proposed legislation as long ago as 1992 that would have allowed it to investigate reports of abuse of elderly persons living in facilities operated or contracted by DDS. However, neither that bill nor similar bills filed in the following two years were enacted. The DPPC tried again in 2000, but that bill failed as well, and the agency hasn’t tried again since, according to DeRiggi.
Lutkevich does not believe legislation to give the DPPC more statutory authority to investigate a wider range of cases would have failed to gain passage in the Legislature had there not been behind-the-scenes opposition to it. That opposition, she maintains, has most likely come from DDS, the agency with the most political turf to protect in matters regarding abuse and neglect investigations.
“If DDS had wanted those bills to go forward (to give the DPPC more investigative authority), they would have,” Lutkevich contended.
A critical mission thwarted by underfunding
COFAR President Thomas Frain similarly said he believes DDS is largely responsible for keeping the DPPC in a state of perpetual underfunding in order to prevent it from having the fiscal resources to investigate more cases in the DDS system.
“DDS has enormous influence and sway over the Legislature,” Frain maintained. “Historically, the Legislature has not gone against DDS. If DDS was in favor of adequate funding for the DPPC, its funding situation would improve overnight.”
As the DPPC’s website notes, the agency’s mission is “[t]o protect adults with disabilities from the abusive acts or omissions of their caregivers through investigation oversight, public awareness and prevention.” The DPPC also arranges for protective services when abuse has been substantiated and provides training and education for service providers, law enforcement agencies and others.
As noted, however, the DPPC’s funding level leaves it unable to carry out its mission fully or effectively fill the gap between the Children and Families and Elder Affairs agencies.
Budget woes have affected staffing
As of fiscal 2014, the staff of the DPPC included four individuals in its administration and finance office, five in its hotline intake unit (with a contracted provider operating the hotline after hours), five in its investigations unit, eight in an oversight unit, two in outreach and prevention, one in information and technology, four in document retention, and two in a legal unit. As noted previously, not all of those staff positions are full-time. That total number of staff was lower in fiscal 2014 than it had been in fiscal 2010.
The DPPC’s budget does not include a five-member Sate Police Detective Unit assigned to the DPPC, which reviews every report to the hotline to determine if a criminal investigation is necessary.
The DPPC’s total funding rose from $2 million to $2.8 million in inflation-adjusted (fiscal 2015) dollars between fiscal 2004 and 2014 – a 37 percent increase over that period. But budget cuts between fiscal 2009 and 2012 necessitated overall staffing reductions, according to agency annual reports and other records. It’s not clear that the agency ever recovered from those reductions.
The agency’s funding level has risen and fallen in the past decade, reflecting the state’s fiscal outlook. In fiscal 2009, funding had actually been increased from the previous year by $204,000, the largest increase the agency was to receive until the current fiscal year. DPPC Executive Director Nancy Alterio stated in the agency’s fiscal 2009 annual report that as a result, DPPC was able to increase its investigation staff by 50 percent, from four to six investigators, “in addition to addressing other caseload challenges in the oversight unit.”
In addition, the number of “overdue” investigations in fiscal 2009 decreased from over 900 to 578, Alterio said. Overdue investigations are those taking more than 30 days to complete. But in the annual report, Alterio also warned that those gains in staffing might be reversed in fiscal 2010.
That warning came true. The DPPC budget was subsequently cut each year from fiscal 2009 through 2012, dropping from $2.6 million to $2.3 million in inflation-adjusted dollars. It was only in the current and past two fiscal years that some of that lost ground was made up in the form of increased funding, bringing the budget to $2.8 million in fiscal 2014.
While fiscal 2009 did mark the beginning of three years straight of budget cuts, the number of overdue investigations did continue to drop to a low of 465 in fiscal 2012, according to DPPC data. But after that, the number of overdue investigations began to rise again, back to more than 600 in fiscal 2014. In fiscal 2010, Alternio noted that about 85 percent of investigations were not completed in 30 days.
In fiscal 2010, the DPPC was forced to reduce its total workforce from 32 to 28 Full Time Equivalent (FTE) staff. Yet at the time, the agency was facing an average annual increase in abuse reports of 4 percent, stretching over the previous 10 years, according to Alterio. Between fiscal 2004 and 2014, an average of 2,100 abuse and neglect complaints a year have been “screened in” by DPPC for investigation.
The DPPC received a relatively small increase in funding in fiscal 2013 of about $86,000, but it was not enough to prevent an additional layoff and reduction in the total staff to 27.4 FTEs.
“Each fiscal year, operating expenses increase and therefore additional funds are necessary just to maintain operations at the same level from year to year,” DeRiggi wrote in response to an emailed question.
A ray of hope in the current fiscal year
The current fiscal year opened last July on a slightly more positive note for the DPPC. For the first time, the agency received a funding increase of more than 10 percent. The Legislature approved a $362,000 increase in agency funding, bringing the DPPC’s budget to $2.8 million.
According to DeRiggi, the budget increase was projected, among other things, to allow a seventh investigator to be hired in the current fiscal year. That 13 percent increase in funding in inflation-adjusted dollars had not been in the budget submitted in January 2014 to the Legislature by former Governor Deval Patrick. Patrick had proposed only a $48,000 increase for the DPPC, which would have been less than two tenths of a percent if adjusted for inflation. It was apparently in the Senate that the larger increase was approved.
Asked if there was a particular legislator who had sought the 13 percent increase for the DPPC, DeRiggi said he and agency staff were not aware of who that might have been. “Hopefully this year’s proposed allocation is a reflection of an understanding of the seriousness of the issues DPPC investigates, but we are not certain of why it came about,” he said.
But given that the outgoing Patrick administration and incoming Baker administration have projected a budget deficit in the current fiscal year that could run higher than $700 million, it is once again possible that the DPPC’s budget will be cut, requiring another cycle of staffing reductions.
And despite the funding increases that the agency received starting in fiscal 2013, it has not been able to restore all of its functions and services that were cut in preceding years. For instance, in April 2009, the DPPC was forced to eliminate a service to human services providers under which it would search its database to see whether prospective employees had been charged with abuse. That service has not since been restored.
(Upcoming post: A case in which the DPPC got sidetracked from its mission)
Public Health Department needs to release report on death of developmentally disabled man
The Department of Public Health has completed an investigation of the case of a developmentally disabled man who died en route to Lowell General Hospital in February 2012 after having been turned away from the hospital twice without any significant treatment.
We may never know, however, what the result of the investigation is. The Department, citing the deceased man’s privacy rights, won’t release the report.
We are appealing this denial to the state’s Public Records Division, arguing that the potential public interest in knowing what happened in this case outweighs the privacy rights of a deceased individual. Our view is that the real potential wrong to this person was done when he was denied treatment by the hospital. The public, we think, deserves to know what happened here and so do persons with developmental disabilities and their families and guardians.
This case suggests possible inadequate training of health care personnel in the treatment of developmentally disabled persons, which is an issue of concern to advocates for the disabled and to many policymakers.
The National Council on Disability, with which we have had our disagreements, maintains that:
The absence of professional training…for health care practitioners is one of the most significant barriers preventing people with disabilities from receiving appropriate and effective health care.
The man was a former resident of the Fernald Developmental Center. He had been living in a group home in Chelmsford and was attending a day program in Lowell on the morning of February 6, 2012, when the staff at the day program made the first call to 911 to take him to the hospital. He had reportedly been having difficulty breathing and was sweating profusely. The hospital released the man shortly after his arrival, however, and sent him back to his group home, according to sources.
By about 8 a.m. the following morning, the man was slumped over in his wheelchair and sweating heavily, a source said. A group home staff member called 911 shortly afterward.
A Disabled Persons Protection Commission (DPPC) complaint form stated that the man was observed at the hospital on the morning of February 7 to be sweating profusely, but his vital signs were good when he arrived. According to the complaint form, the man was sent home with a prescription (the name of which was redacted). According to sources, this was the second time he had been sent away by the hospital.
The DPPC complaint form stated that shortly after arriving back at the group home, the man began to vomit and then lost consciousness, and that the staff began mouth-to-mouth CPR until paramedics arrived. The group home received a call from the hospital later that afternoon that the man had died.
Because the man’s death appeared to have been connected with his treatment or lack of treatment by the hospital, the DPPC referred the case to the Department of Public Health for investigation.
Did the apparent failure of Lowell General Hospital to properly diagnose this man’s illness and provide him with adequate treatment result from a lack of training in disability issues? Did the Public Health Department consider that question in their investigation of this case? Unless the Department releases its report, we will never know the answers to those questions.
While the Public Health Department’s position is that a state law [(M.G.L. c. 66A, s. 2(k)] prohibits them from releasing medical information about an individual, even if that person is deceased, we are not in agreement with their interpretation.
First, there do not appear to be consistent policies among state agencies in releasing investigative reports on deaths of developmentally disabled persons. The Disabled Persons Protection Commission (DPPC) has released a number of these reports to us after redacting what they considered to be identifying information.
Secondly, while we have blogged about this case, we have never used the name of the individual involved or tried to publicly identify him. A Department of Public Health attorney wrote to us, though, that even if we did not use the individual’s name in a blog post about the investigative report, “it is possible for someone to utilize the information that is available (age and date of death) and potentially come up with the patient’s name.” While that is possible, we do not understand why anyone would do that in this case. It seems farfetched.
Third, even if it were true that someone might reveal the identity of the individual involved, there appears to be case law that limits privacy rights of deceased individuals. A Hofstra Law Review article notes that “while postmortem medical confidentiality exists, it is much narrower than the privacy protections guaranteed to the living.” In Massachusetts, case law involving privacy rights after death does not appear to have been settled. (See Ajemian v. Yahoo!, Inc.)
Finally, the privacy statute cited by the Public Health Department [(M.G.L. c. 66A, s. 2(k)] states only that the Department must:
maintain procedures to ensure that no personal data are made available in response to a demand for data made by means of compulsory legal process, unless the data subject has been notified of such demand in reasonable time that he may seek to have the process quashed.
This seems to imply that the person involved has to be living. And, as attorney Steve Sheehy notes in a comment to this post below, at most this statute would require notice to the deceased person’s executor or representative.
Prior to filing our appeal, I asked the Public Health Department attorney whether it might be possible to provide us with a copy of the investigative report with explicit personal data or medical information redacted. As I noted, our interest is whether the Department has investigated or commented on the hospital’s procedures for training staff to treat persons with developmental disabilities.
To the extent that the Department’s report addresses hospital policies and procedures in this case, it would probably not be necessarily for us to know specific medical details about this individual. To date, I have not received an answer from the Department to my query.
Unfortunately, this is not an isolated case of apparent institutional secrecy. When it comes to deciding whether to make public reports of potential mismanagement by human services or health care facilities, the natural instinct of public managers and administrators seems to be to keep it all secret and cite privacy rights as the reason. That has certainly been the practice at the DPPC, but at least, as noted, the DPPC has released redacted reports.
We hope the Public Records Division, which is part of the office of Secretary of the Commonwealth Bill Galvin, will make the right decision and order the Public Health Department to make known the results of its investigation of this troubling Lowell General Hospital case.
DDS should not be investigating itself for abuse and neglect in the Perry case, or in any other cases
As Fox 25 news reported earlier this month, the Department of Developmental Services has determined there was not sufficient evidence to charge staff at the Templeton Developmental Center with mistreatment, stemming from the death last year of Dennis Perry, an intellectually disabled man.
Perry, who was 64, died in September 2013 after having been allegedly shoved into the side of a boiler at the developmental center’s dairy barn by Anthony Remillard, a resident of the center, who had a history of violent behavior.
The DDS investigation report and related correspondence, dated in August of this year, termed the behavior of certain staff prior to the alleged assault “inappropriate” and “unprofessional,” and recommended retraining of Templeton personnel. But the report concluded that there wasn’t evidence that the staff could have prevented Remillard’s alleged “spontaneous and unpredictable assault” on Perry.
We are not in a position to second-guess the conclusions of the DDS report. But this case once again raises the question whether it is appropriate for DDS, in effect, to investigate itself in abuse and neglect cases.
Due to legal loopholes, which I’ll discuss below, DDS itself investigates all cases of abuse and neglect of persons over 60 with developmental disabilities who live in long-term care facilities operated or contracted by the Department. As a result, the Department’s investigation of Perry case and its handling of it raise numerous questions.
By way of disclosure, Thomas Frain, president of COFAR’s Board, is representing Perry’s family in legal action against the state in the incident. I haven’t consulted Attorney Frain in writing this post, other than to ask him for a copy of the DDS investigation report.
Among the questions raised by the Perry case that don’t appear to have been considered in the DDS report are: Was it appropriate for Remillard to have been admitted to the Templeton Center in the first place, and was the overall level of supervision at the Templeton Center adequate? The DDS report didn’t even appear to consider whether the level of supervision of Remillard himself was adequate. The report merely examined the actions of staff caring for Remillard in the moments prior to, and during, the alleged assault.
For instance, the DDS report noted that a Templeton staff member had “sat” on Remillard because he wouldn’t get up from a nap just before the alleged assault of Perry occurred, and told him he would not be given a sandwich if he didn’t cooperate. There was a reference to a staff person “flicking” some water at Remillard as well.
The DDS report, which was based on statements taken from staff, stated that Remillard laughed in response to the staff person’s actions, got up and went to a bathroom to change his shoes. Then, on his way with a staff member to the an exit door in the dairy barn, Remillard suddenly spun around and shoved Perry, who had been standing nearby, toward the boiler, causing him to hit his head and fall to the floor. The staff stated that Remillard’s action was so unexpected and sudden that there was nothing they could do to prevent it.
That may all be perfectly true, but in focusing entirely on the actions of staff immediately prior to the alleged assault, the DDS report missed the potentially more important questions noted above. The report did note that Remillard had a history of criminal assaults and threats, including threatening with a dangerous weapon and threatening to blow up a school, and had a pending arson charge against him when he was admitted to Templeton. While at Templeton, he was verbally abusive toward staff and had assaulted staff members, according to the report. So, why not examine some questions that go beyond just what the staff at the time of the alleged assault did or didn’t do?
As we have pointed out many times, Templeton is one of several state-run facilities that have been either closed or significantly downsized in recent years, and the declining level of staffing and supervision in these facilities has been a source of concern. It’s not surprising that DDS, which is heavily invested in closing and downsizing these facilities, would not want to examine any potential negative impacts of that downsizing.
For reasons like that, we have long argued in favor of providing more funding and resources to the Disabled Persons Protection Commission (DPPC), an independent agency, to investigate abuse and neglect complaints. The DPPC, however, has been given such a limited budget and resources by the administration and Legislature that it is forced to refer most of the complaints it receives to DDS for investigation. The DPPC is further prevented by statute from investigating allegations of abuse or neglect of individuals over the age of 60.
Because Perry was over 60, the DPPC referred the investigation of his assault to both DDS and the Executive Office of Elder Affairs, according to a DPPC official whom I emailed about the case. The EOEA itself is prohibited by statute, however, from investigating abuse cases involving elderly persons in long-term care facilities such as developmental centers and group homes.
The result is that DDS has become, by default, the only agency with authority to investigate cases such as that of Perry in which an elderly person with an intellectual disability is allegedly abused in a long-term care facility.
The DPPC tried to rectify that situation as long ago as 1992. A May 1994 directive from the then secretary of elder affairs expressed support for a bill filed that year by the DPPC that would have allowed the DPPC to investigate reports of abuse of elderly persons living in facilities operated or contracted by DDS. The directive noted that similar legislation had failed to pass in the previous two years. The 1994 bill wasn’t enacted.
A DPPC official said this week that the agency filed a bill again in 2000 that would have given it the authority to investigate abuse of elders in DDS facilities. That bill failed as well, and the agency hasn’t tried again since. It seems fairly clear that the DPPC realized it was going to get nowhere with legislation that would give it more investigatory authority at the expense of DDS.
For years, the DPPC has asked for more resources to enable it to hire more investigative personnel. In our view, it has been DDS itself that has lobbied the Legislature against the DPPC’s common-sense recommendations to increase its investigative authority and resources, and has fought to keep the DPPC’s budget as low as possible. It appears to be a political turf issue as far as DDS is concerned.
In the meantime, it appeared earlier this year that the Legislature’s Children, Families, and Persons with Disabilities Committee might step in and take an independent look at the Perry case and the issues surrounding it. Last January, we received a notice from the office of Representative Kay Khan, House chair of the committee, that the committee was planning an oversight hearing on the Perry case. But despite a subsequent inquiry that we made to the committee, we never received any additional information about such a hearing.
On Monday, I emailed both Khan and her staff, and Senator Michael Barrett, committee Senate chair, and his staff, asking whether an oversight hearing on the Perry case is still planned and, if not, why it had been cancelled. To date, I’ve received no response to those queries.
Why we won’t be at the bill signing at Fenway Park
Tomorrow, Governor Patrick will be at Fenway Park for the ceremonial signing of three pieces of legislation that are intended to make major changes in the care and services for the developmentally disabled in Massachusetts.
Many advocates will be there, but many if not most of those in attendance will be corporate providers to the Department of Developmental Services, who played key lobbying roles in the drafting of each piece of legislation last spring. As a result, as we have pointed out, each of these new laws (because Patrick signed them for real in August) is flawed in a major way.
There really is no reason to celebrate unless and until changes are made in the laws, so we won’t be at the event tomorrow. In a nutshell, here are the problems with the laws:
1. National Background Check law: The law authorizes national criminal background checks for persons hired to work in an unsupervised capacity with persons with developmental disabilities. It will ultimately require that both current and prospective caregivers in the DDS system submit their fingerprints to a federal database maintained by the FBI. Those requirements are long overdue, but they will be further delayed under the new law.
The fingerprint requirements will not be phased in under the law for all current employees in the system until January 2019, and will not take effect for new employees until January 2016. Another provision in the new law that raises questions appears to allow employees to be hired before the results of their background checks are obtained.
COFAR and the VOR, a national advocacy group for the developmentally disabled, sent a joint message to lawmakers this week that states: “Much harm can be done to vulnerable people due to the delayed implementation and the ambiguous language that we hope was not the intent of the Legislature.”
When COFAR contacted the Legislature’s Judiciary Committee last summer to ask why the committee had approved the delays and the ambiguous provision in the new law’s requirements, a staff member referred us to Johnston Associates, a Beacon Hill lobbying firm. A member of the firm said providers and some other advocates had pushed for the delays. No one could or would give us an answer as to why language was inserted that appears to allow the hiring of employees before their background checks are done.
2. The ‘Real Lives’ law: This legislation had been pushed for years on Beacon Hill by the providers. The stated intent of the measure is to introduce “person-centered planning” into the DDS care system by allowing each DDS client to “direct the decision-making process” and manage their own “individual budgets” for care.
In the wake of criticism earlier this year from COFAR, legislators removed a provision from the bill, which would have named the Association of Developmental Disabilities Providers and the Arc of Massachusetts to a board that would advise DDS in developing the person-centered planning system. Another provision that was thankfully removed would have established a “contingency fund” to compensate providers that lose funding when clients move out of their residential facilities.
But the new law still raises a number of concerns, including providing what appears to be only a limited role for guardians and family members in the person-centered planning process. The law also introduces a central role in the process for vaguely defined “financial management services” and other privately run entities.
In a joint statement this week, the VOR and COFAR called on legislators to “ensure that vulnerable individuals with intellectual and developmental disabilities have the support of legal guardians, when appointed, rather than financial managers or independent facilitators” in undertaking person-centered planning.
The joint statement also urged legislators to add a provision to the law ensuring that persons seeking DDS services would have an explicit choice among a range of care options and settings, including state-operated facilities and group homes, provider-operated homes, shared living arrangements, and home-based care. State-operated care is often not presented as an option to people seeking DDS residential services. Those persons are instead presented only with the option of corporate provider-operated residential care.
3. The DDS eligibility expansion law: This legislation is intended to fill a major gap in DDS care in Massachusetts by extending eligibility for services to people with autism and two other specified disabilities known as Prader-Willi Syndrome and Smith-Magenis Syndrome.
Until the enactment of this law, DDS had restricted eligibility for DDS services to people with “intellectual disabilities,” as measured by a score of approximately 70 or below on an IQ test. That left out many people with developmental disabilities, including autism, even though those conditions may severely restrict an individual’s ability to function successfully in society. If those people score higher than 70 on an IQ test, they are routinely denied services.
However, in specifying three developmental disabilities that make individuals eligible for DDS services, the new law necessarily leaves out other conditions that often result in many of the same types of functional limitations, such as Williams Syndrome, spina bifida, and cerebral palsy. The new law was the product of closed-door negotiations among legislators, administration officials, and selected advocacy organizations.
In addition to changing that eligibility standard, the new law establishes a permanent new autism commission and authorizes the establishment of tax-free, individual savings accounts to pay for a variety of DDS and other services. The commission will consist of 35 members, including legislators, administration officials, the Arc of Massachusetts, and advocates from autism advocacy organizations. There are no seats on the commission for any advocates of state-run care for the developmentally disabled.
The VOR and COFAR urged legislators this week to make changes in the law “to better identify and serve eligible individuals in need of services and supports.”
In sum, while these new laws have many well-intentioned supporters, major changes are needed in each piece of legislation to enable it to fulfill its purpose and prevent it from doing more harm than good. It is not yet time for everyone to pat themselves on the back as will no doubt be happening tomorrow at Fenway Park.
Heavily redacted state reports raise more questions than answers in sudden deaths of DDS clients
More than three years after the sudden death of a former resident of the Templeton Developmental Center, we have received a report on the matter from the state Disabled Persons Protection Commission, which found that the resident had adequate care and services at the time of his death and that there was no evidence he had been neglected or abused.
But the report is so heavily redacted that it is difficult to determine whether a number of specific questions and allegations that had been raised about the person’s care were actually investigated. It is also unclear why it took nearly two years for the DPPC to provide us with the report, which was completed and approved by a supervisor in the agency in November 2012.
The former Templeton Center resident died on July 24, 2011, four days after he was transferred to a state-operated group home in Tewksbury. The cause of death was reportedly a blood clot in his lung.
This was one of three cases we heard about in 2011 and 2012 in which clients of the Department of Developmental Services, each of whom happened to be a man in his 50’s, died suddenly after being transferred from developmental centers to state-run group homes operated by Northeast Residential Services, a division of DDS. A second case was that of a former resident of the Fernald Developmental Center, who died on July 6, 2011, after having ingested a plastic bag in a Northeast Residential Services group home in which he was living in Tyngsborough.
In that second case, a DPPC report concluded that there was a lack of adequate supervision of the man by his caregivers, although the investigative agency was unable to determine whether the man had ingested the plastic bag while he was in the group home or his day program or was being transported between the two. That report was also so heavily redacted that it left numerous questions about the incident unanswered for us, including whether the man’s care plan may have been significantly changed after he left the Fernald Center.
In a third case, a 51-year-old resident of a Northeast Residential Services home in Chelmsford died of acute respiratory failure on February 7, 2012, after having been sent back to his residence twice by Lowell General Hospital. That man had formerly lived at the Fernald Center as well. We have just requested that report from the DPPC.
While it is of course disturbing that three DDS clients would die suddenly in a relatively short span of time in the same regional group home system, we have no information to indicate that staff in any of the Northeast Residential Services homes were at fault in any of the deaths. These cases may in fact raise more questions about the DPPC’s investigation and reporting procedures than they do about care in DDS-run group homes.
In the case of the man who died of a blood clot four days after leaving Templeton, we raised questions at the time whether the stress of the move may have contributed to his death, or whether there was a medication error or other care issue involved. It was also unclear whether staff familiar to the man while he was at Templeton was available to accompany him to his new residence in Tewksbury. Moreover, we noted that DDS may not have had uniform policies or procedures in place as to whether familiar staff should accompany transferred residents to their new locations.
The DPPC report found that the man had direct-care staff available 24 hours a day and nursing staff “as needed” in his group home, and that there was no evidence that any medication error had occurred.
I have written to the DPPC to ask why it took so long to release the report on the former Templeton resident’s death. I had requested a copy of the report by letter on October 31, 2011. The report is dated as having been completed on November 1, 2012, and as having been approved by a DPPC supervisor that same day. It was mailed to us with a cover letter, dated September 17, 2014.
In contrast, the report on the July 2011 death of the former Fernald resident who ingested the plastic bag, while also heavily redacted, was dated March 29, 2012, and provided to us in May of 2012.
The former Templeton resident’s guardian, who was also his niece, told me after his death in July 2011 that her uncle had had a blood clot in his leg about a year before the move from Templeton (deep venous thrombosis), but the problem had been cleared up. She said he had been put on a blood thinner called Coumadin, but that she later found out that he was taken off that medication while he was still at Templeton. She said she was never consulted about the decision to take him off the medication. The guardian said that other than the instance of thrombosis, her uncle had only minor health problems. He had worked every day in the dairy barn at Templeton.
While most of the discussion in the DPPC report on the issue of the former Templeton resident’s medication appears to have been redacted, there was a statement in the report that “all necessary medications were continued,” and that a review of documentation from July 19 through the day of his death on July 24, 2011, “indicates no medication error occurred.” Due to the redactions, however, it could not be determined from the report which medications the DPPC considered to be necessary. There was no mention in the unredacted portions of the report of any allegation that the Coumadin had been discontinued.
The guardian had also told me the staff from the group home had spent about a week at Templeton with her uncle prior to the move, but she was not sure whether any familiar staff from Templeton accompanied him during the actual transfer to the new residence. The unredacted portions of the DPPC report were not clear concerning this potential allegation either.
According to the DPPC report, the man’s move from Templeton to the Northeast Residential group home had been planned, and staff from both facilities attended the planning meetings. The resident was actively involved in choosing the new residence and visited it along with familiar staff and family prior to moving there, the report stated.
In discussing the circumstances of the man’s death, the DPPC report stated that he had left his bedroom at 9:15 on the morning of July 24, 2011, and had indicated he was not feeling well. Three staff members responded immediately. The man became short of breath and then unresponsive, so CPR was initiated immediately and 911 was called. CPR was continued until the arrival of paramedics, who continued it while the man was transported to a hospital by ambulance. He was pronounced dead at 9:47 a.m.
The March 29 DPPC report on the death of the man who ingested the plastic bag also leaves many questions unanswered about his care, including whether the man’s Individual Support Plan (ISP) had been changed in a significant way after he left the Fernald Center, and whether his level of supervision in the group home was less than the level he had received while at Fernald. There is an indication in the report that the man’s ISP was changed in September 2010, apparently after he moved to the group home, to remove “target (presumably inedible) items” from mention in the plan. Much of this discussion, however, was redacted in the report.
The man reportedly had a history of ingesting foreign objects, a condition known as pica. However, even what was apparently the word “pica” was redacted throughout the report.
It is understandable that public health and human service agencies have a desire to protect the privacy of individuals in their care or their jurisdiction. But it often seems that the desire to redact or withhold information goes much farther than necessary and fails to protect the public’s right to know about these cases. In our view, the two DPPC reports discussed here fall into that latter category. We believe much of the redacted information in both cases could have been made public without compromising either of these individuals’ privacy in any way.
The questions raised about the care and services that were investigated in these cases are important ones. Something seems to be wrong when investigative and other agencies withhold key facts about cases like these and end up being the only ones who know those facts.
New DDS background check law has delayed requirements
A new national criminal background check law in Massachusetts may well have a major, positive impact on services and care for people with developmental disabilities in the state.
But under the law, the background check requirement is delayed for many, if not most, current employees in the Department of Developmental Services system for more than four years, until January 2019. The requirement is delayed for a year and a half for prospective employees in the system.
The long-awaited law, which was signed by Governor Patrick last week, authorizes national criminal background checks for persons hired to work in an unsupervised capacity with persons with developmental disabilities. The law will ultimately require that both current and prospective caregivers in the system submit their fingerprints to a federal database maintained by the FBI. The law applies to DDS employees, employees of corporate service providers to the department, and caregivers over the age of 15 of persons living at home.
Up to now, persons hired to care for clients in the DDS system have had to submit only to an in-state criminal background check, which identifies only criminal arrests and convictions in Massachusetts, and does not identify any convictions a job applicant might have from another state. A national background check system will fill in that potential gap in the applicant’s history.
The new law’s fingerprint requirements, however, will be phased in through January 2019 for current employees, and will not take effect for new employees until January 2016. Another provision in the new law that raises questions appears to allow employees to be hired before the results of their background checks are obtained. That provision states the following:
Department-licensed, funded or approved programs and providers of transportation services on behalf of any department-licensed, funded or approved program may hire individuals without first obtaining the results of a state and national fingerprint-based criminal history check (my emphasis).
It’s not entirely clear to us what the intent of this provision is or what its impact might be. It appears to allow people to be hired before they are cleared through the FBI database. The provision does not specify a time frame for obtaining the background check results after an individual is hired.
Does this provision mean that even after January 2019, someone could be hired by DDS or a provider and could work for weeks or possibly months with developmentally disabled people before their background results are obtained or before their backgrounds are even checked? Furthermore, does the provision allow for that leeway even for in-state background checks?
I contacted the staff of the Legislature’s Judiciary Committee earlier this week to ask about that provision and the provisions phasing in the background check requirements until 2016 and 2019. It was apparently in the Judiciary Committee that these provisions were inserted. Interestingly, the Judiciary Committee staff person I talked to referred me to Philip Johnston Associates, a Beacon Hill lobbying firm, which was apparently involved in the final negotiations over the bill, apparently on behalf of DDS corporate providers.
On Tuesday, I spoke to a member of the Johnston Associates firm, who said she was unsure as well about the intent of the provision that appears to allow the hiring of individuals prior to checking their backgrounds, and that she would get back to me. I have not yet heard back from her. I also placed two calls on Monday and Tuesday to the state Department of Criminal Justice Information Services, which is in charge of administering the law. I have yet to get a return call from that department.
The Johnston Associates staff member said the providers and other advocates involved in negotiations over the background check legislation pushed for phasing in the fingerprint requirements due to concerns over the time needed to implement them. A member of the Association of Developmental Disabilities Providers expressed a concern in a news article last week that the new fingerprint requirements could prove burdensome to smaller provider agencies.
It is not clear to us though that more than four years is really needed to phase in the national background check program for current employees in the DDS system, or that a year-and-a-half delay is needed before requiring new employees to be fingerprinted. We’re skeptical that that much time is needed, partly because we’ve witnessed a lack of urgency on the part of both the Legislature and the administration for the past several years in just getting this law passed. It seems possible that that lack of urgency is being carried over into implementing the law’s requirements.
National background check legislation had been proposed each year for up to a decade by then Representative Martin Walsh, now mayor of Boston, before it was finally enacted this year. Each year, the legislation would get stuck in either the Judiciary or House Ways and Means Committees, or both, and then would die at the end of the session. The administration did little during that time to lobby for passage of the measure. As a result, Massachusetts has been only one of a handful of states without a national background check program for people with developmental disabilities.
Meanwhile, the federal government has stood ready to assist the state with grant money under the Affordable Care Act to help implement the new background check law; but Massachusetts has declined to apply for that federal money, which has available since 2010. The state has even been slow to implement national background checks for school teachers and children’s day care providers.
While we’re glad to see that the DDS national background check bill is finally law, we hope the administration now shows a true commitment and sense of urgency in getting it to work.
The endless shuffle continues for the DDS national background check bill
Does anyone in the state Legislature or the Patrick administration really want to set up a national background screening process for people hired to work with the intellectually disabled in Massachusetts?
Apparently not.
Everybody likes to talk about how important it is to protect the most vulnerable among us from abuse and neglect. Yet the Legislature has been unwilling for years to pass national background check legislation, and the administration has been unwilling even to apply for federal funds that are available under ObamaCare to implement a national background check program.
So far this year, there’s not much reason to think anything is going to change, though there is always a faint hope. This year’s version of the national background check bill (H. 4125) was approved by the Judiciary Committee in late May after the measure had languished there for nearly a year and a half. But it was sent as usual to the House Ways and Means Committee. Every time the bill has been sent to House Ways and Means, it has died there. For years, the bill has been on an endless shuffle between these two committees.
Another piece of bad news for the legislation this year is that the only elected official in Massachusetts who has ever made a recognizable and visible effort to promote it is Martin Walsh, who is now mayor of Boston and no longer in the House of Representatives. For years, as a state representative, Walsh filed legislation to enact national background checks for Department of Developmental Services employees and employees of DDS corporate providers; and as recently as last July, Walsh testified in favor of his bill before the Judiciary Committee.
COFAR and a wide range of other advocacy groups for the developmentally disabled have long urged passage of the legislation. But other than Marty Walsh, we see no elected officials who seem particularly interested in enacting this legislation. You have to wonder why. Is there a special interest group out there that we’ve never heard of that is working to keep this legislation bottled up?
The administration claims to be in support of the bill, but they have not testified in favor of it in recent years, and, as noted, have never applied for available federal funding to implement a national background check program in Massachusetts. That funding, as noted, has been available under the Affordable Care Act since 2010. In that time, the federal Centers for Medicare and Medicaid Services has awarded more than $50 million to 24 states to design national background check programs.
National background checks involve matching a job applicant’s fingerprints against a federal database maintained by the FBI. Every advocacy group for the disabled that we know of agrees that state-only background checks — which is what DDS currently does in Massachusetts — are not sufficient in screening applicants for direct-care jobs because those checks do not turn up convictions for criminal activity in other states.
Massachusetts has apparently not been a leader in background screening of people who work with other vulnerable groups either. In January 2013, Massachusetts did enact a law requiring national background checks for school teachers and early education employees, but it was the last state in the nation to do so.
By the way, where are the candidates for governor and attorney general on this matter?
Please call the House Ways and Means Committee and ask them to finally approve H. 4125 and get it enacted; and please call the governor’s office and ask them to apply for funding available to implement the program.
You can reach the Ways and Means Committee at (617) 722-2990, and the governor’s office at (617) 725-4005.
Abuse and neglect found to have caused serious injury to group home resident
The state Disabled Persons Protection Commission has substantiated charges of abuse and neglect against a staff worker in a Bedford group home in which Paul Stanizzi, an intellectually disabled man, was seriously injured last August.
Stanizzi was at least partially paralyzed in the incident in the residence, which is operated by The Edinburg Center, Inc., a corporate provider to the Department of Developmental Services. According to a DPPC report on the incident, Stanizzi was found lying on his back in his room by the staff worker on the morning of August 27. The staff worker, who had been on the overnight shift, told investigators he had heard noises in Stanizzi’s room during the night, but never investigated them and then fell asleep for several hours during his shift.
After finding Stanizzi unresponsive on the floor at 6:30 in the morning, the staff worker admitted he lifted Stanizzi up, in violation of his First Aid training, and put him in his bed. He then waited approximately 25 minutes prior to calling 911.
Stanizzi, who is non-verbal, was taken to Lahey Clinic in Burlington, which was planning to discharge him, according to the DPPC report. But the hospital then admitted him for immediate surgery when it became apparent that Stanizzi had a spinal injury. No group home staff accompanied Stanizzi to the hospital, according to the report.
The name of the group home staff worker is redacted in the DPPC report, which is dated February 20 of this year. COFAR had requested a copy of the report in September and was provided by the DPPC with a redacted copy yesterday. The report concluded that Stanizzi was seriously injured as a result of an “act or omission” on the part of the staff worker, and that a charge of abuse against the worker “was substantiated.”
When Fox25 TV news first reported this incident, the chief executive officer of The Edinburg Center maintained that Stanizzi may have injured himself.
According to the DPPC report, the staff member reported that when he found Stanizzi on the floor of his room, he had a black eye, bloody nose, bruises, and a gash on his knee. The report also stated that Stanizzi was seen to have “other older injuries that did not appear to be self-inflicted,” and footprints on the back of his shins. “It is believed that staff at the group home used extreme force on (Stanizzi), resulting in the injuries,” the report stated. Another client was observed in the past tied up in a chair, according to the report.
The incident involving Stanizzi has reportedly been under investigation since September by the Middlesex District Attorney’s Office. I placed a call this morning to the DA’s office, seeking information on the current status of the case and whether criminal charges are expected to be filed. Fox25 reported in November that a Middlesex grand jury had been impaneled in the case.
The staff worker, who was the only staff on duty in the group home during the overnight shift from August 26 to 27, told the DPPC that at about 4 a.m., he had heard noises from Stanizzi’s room, but he did not check on him. Instead, he admitted that he fell asleep and woke up about 6:30, and then found Stanizzi lying on the floor on his back, not moving.
The staff worker told the DPPC he tried to get Stanizzi to stand up, but he could not, so he “lifted him off floor, put him over his shoulder and placed him back in bed.” Instead of calling 911, the staff worker tried to have Stanizzi drink juice, the report stated. The staff worker also said he tried unsuccessfully to contact two supervisors. According to the report, there was testimony that the act of moving Stanizzi without first immobilizing his spine may have worsened his injuries. The report stated that Stanizzi was “expected to be a quadriplegic,” as a result of the spinal injury.
The DPPC report noted that a police officer who responded to the home noticed that the staff worker had a fresh scratch on right side of his face and that the staff worker told the officer he had no idea how it happened. The officer said he found that suspicious. There were four residents in the home, all non-verbal, and none had aggressive or assaultive behaviors, according to the report.
The DPPC report stated that documents indicate that Stanizzi had no history of an unsteady gate or falling out of bed. The day before the incident, at a day program, the same staff worker had refused, according to testimony, to allow staff there to examine apparent abrasions to Stanizzi’s legs.
According to the report, the staff worker’s testimony changed in a number of instances. He initially denied that he had fallen asleep and later admitted that he had done so. He also admitted to having given false statements about the day program incident and about Stanizzi having hit himself in the face. The report states that the staff worker denied that he physically assaulted Stanizzi, but it concluded the truthfulness of that statement “is called into question” by the staff worker’s admission that he had lied about the other issues.
The DPPC report recommended retraining for staff and regular checks by the provider to make sure staff are awake on overnight shifts, as well as documented bed checks. While the staff worker implicated in this case has reportedly been terminated, the report recommend he not be rehired in the future.
As COFAR previously reported, an online DDS licensing report on the Edinburg Center stated that Edinburg’s two-year license to operate residential group homes was being “deferred” because of problems with medication administration. Other problems were noted in the report that required a 60-day follow-up by DDS, although there were no references to specific problems with abuse or neglect there. (As of today, the latest licensure report on DDS’s website is still dated December 2010, which would make it about a year and a half out of date. DDS licensure reports and operating licenses are valid for two years, meaning that a new report should have been posted on the website in December 2012.)
The 2010 licensure report also stated that Edinburg had been experiencing growth since 2008 and yet was “dealing with economic decline and its ongoing impact on agency services.” The report added that the provider had lost clinical and emergency services and yet had opened two new 5-person homes in FY 2010. As we noted, it seems strange that a provider would be cutting services and yet opening new homes at the same time. Opening new facilities at the same time that services are being cut may indicate that this provider may be stretched thin on its staffing, or was stretched thin as of December 2010.
The Stanizzi family has apparently filed suit against The Edinburg Center. Yesterday, I received a subpoena from an attorney for the provider, seeking all records COFAR possesses relative to the case.
Questions surround care of Sara Duzan in group home
Sara Duzan has been placed in physical restraints in a group home 37 times since she was moved there on July 24, and the restraints continued through the month of November, according to staff records provided to the Duzan family.
A “baseline behavioral data” report on Sara’s care, dated December 11, states that there were 7 restraints imposed on Sara over a 7-day period in July; 10 restraints in August; 5 in September; 7 in October; and 8 in November. The report also indicates that behavioral episodes leading to the seclusion of Sara in her room in the Westminster residence also continued to take place each month. There were 7 such episodes in July; 16 in August; 9 in September, 15 in October, and 12 in November.
The report of the clinical staff at the state-funded Becket Family of Services residence appears to raise questions as to whether Sara has made progress since she was placed there on July 24. Since then, contact with her family was sharply restricted and then cut off entirely by the provider and her current guardian. The Duzan family, who lost their guardianship of Sara in 2009, is fighting to regain their guardianship and to bring her back to their home.
Sara’s bedroom in her family home in Westwood, where she lived for over 18 years of her life. She was at home until 2008, and later from November 2011 until January 2013. In her current group residence run by Becket Family of Services, she is living in a room with only a bed, box-spring, and some personal items. She destroyed many of the other furnishings in the room in what her mother believes have been repeated attempts to escape.
In a report filed December 13 with the Norfolk County Probate Court, Sara’s current guardian, Lynne Turner, contended that Sara was improving at the Becket residence and her behavior was becoming “calmer and less agitated.” But that assessment seems to be at odds with the staff report showing that episodes leading to restraints and seclusion have been continuing.
Sara has a rare genetic disorder called Smith-Magenis Syndrome (SMS), which is characterized by behavioral outbursts and intellectual disability. Parents of children with SMS from around the world have commented on this blogsite that using restraints to control behavioral outbursts of persons with SMS is counter-productive and usually makes the behaviors worse.
Court-appointed guardian has not visited the residence
Turner indicated in her report to the court that she has never visited Sara in the Becket residence where Sara has lived since July. Turner stated that she intended to visit her on one occasion but was ill, and that she planned a visit “within the next few weeks.” Turner also stated in the report that Sara was not taking any ant-psychotic medications. Yet the staff records indicate that Sara has been taking anti-psychotic or psychotropic medications, noting that she had refused them on 14 occasions since July.
Questions linger over cut-off of family contact
The latest records also appear to raise questions about the reasons given for the complete cutoff in family communication and contact with Sara.
Turner stated in her report to the court that family communication with Sara had been terminated because Sara became so agitated after calls from the family members she acted out and had to be restrained “on more than one occasion.” It was determined, Turner wrote, that Sara’s reaction to family phone calls caused a safety problem to Sara and staff. Turner added that “parental contact refers to visits, phone calls, gifts, and any other attempt to contact Sara.” The family was therefore not even permitted to send Christmas gifts to Sara this month.
A staff clinician’s report, however, indicated only one instance in which Sara allegedly became violent after a family call; and that clinician’s assessment that Sara was acting violently at that time appears to be contradicted by a statement in a police report that Sara appeared shy and timid.
Robin Thompson, a Becket clinician, stated that following a call with her parents on November 19, Sara “exhibited violent behavior over a span of hours” and had to be restrained. Thompson stated that no further calls from the family have been permitted since that incident, at her recommendation.
A phone call with Sara’s father, however, appears to have taken place on November 18, the day prior to the date noted by Thompson, according to a Westminster Police report. According to the police report, Sara told her father she had been hit in the mouth by a staff member, and the family then called police to the house. The police report stated that when the officers arrived, Sara was “shy and was hanging on with a friend,” another client. The report indicated that the police were not able to establish that Sara was assaulted by anyone on the staff, although she did have small scabs on her lip and toe.
According to the police report of the incident, Sara said she had been hurt about a week previously after the staff had broken down the door to the bathroom. Another client told police Sara had locked herself in the bathroom and was threatening at the time to jump out the window.
Thompson’s clinical report stated that in calls to her mother and father, “Sara focuses on the negative.” Thompson speculated that Sara was “conditioned” to do this because she has stated that “ if she is ‘bad’ she can tell her family and she can go home because ‘Becket won’t keep me.’” As a result, Becket initially set rules that the family would be allowed to make one 15-minute call a week to Sara, and that no one was allowed to discuss visits home or whether Sara was unhappy at the facility or its treatment of her. All calls were to be monitored by staff, and the family was to give a two-minute warning to Sara after 13 minutes that the call was coming to an end. Sara was specifically prohibited from talking to her family about any “dislikes about staff, residence, Becket,” or about restraints.
In her report to the court, Turner maintained that it was Sara’s parents who were failing to abide by the telephone call “protocol,” and that this was causing Sara to become agitated.
Maryann Duzan, Sara’s mother, denied that the family’s phone calls with Sara were causing her to become agitated. She said she believes the cause of Sara’s agitation has been her “imprisonment” in the Becket residence, and possible abuse that she has suffered there. She said the phone calls were discontinued because Sara had made statements during the calls about being assaulted, restrained, and living in poor conditions. In those instances, Maryann said, the phone was disconnected shortly after Sara began making those claims.
Lack of a transition before placement in program
It appears that Sara was placed by Turner in the Becket residence without an adequate transition period, which Maryann maintains should have involved her family. The sudden placement appears to have resulted in a violent episode of self harm and property destruction on Sara’s second day in the residence that necessitated a call by the staff to the police.
In her clinician’s report, Thompson described the episode on Sara’s second day at Becket, saying Sara barricaded herself in the room, ripped out the light fixtures, and attempted to electrocute herself.
Maryann Duzan maintains that Sara was “dumped” at the Becket residence with no advance notice to her on her 22nd birthday. “She thought she was coming home for good on her birthday,” Maryann said. “They didn’t tell her she was going there (to the Becket residence), nor were we allowed to talk to her.” Since then, Maryann said, the family’s requests to visit Sara on Mother’s Day, Father’s Day, and her birthday have all been denied.
Maryann also said most of the furnishings in Sara’s room in the Becket residence have been removed. A report filed by the police in September stated that Sara’s room consisted of a “bed and box-spring and linens and a few personal items.” Maryann maintains that Sara had “destroyed other furniture in the room as she has fought to get out of this imprisonment.”
Since July, Thompson said, “Sara has exhibited some progress,” including some success in community outings, and widening her choice of foods; but her assessment appeared to stop short of Turner’s more positive assessment that “Sara’s behavior is becoming more appropriate and less assaultive.”
Thompson stated in her report that Sara engaged in “severe self harm” and property damage after a dental visit on Sept. 11. That episode does not appear to have been related to contact with her family.
Community outings
The Becket baseline behavioral data report indicates that Sara earned 10 weekly outings from the Becket residence due to good behavior since July. According to Thompson’s clinical report, the outings have consisted of Sara’s being taken to a Burger King drive-thru; “short hikes in a local park”; a visit to “Michelle’s” in November to purchase items that were pre-ordered; and a visit to a mall in December and to a drive-through at a Dunkin’ Donuts. She had been “successful in all community outings,” the report noted.
Maryann Duzan maintained that the community outings described by Thompson appear much more restricted than the access Sara had in the community when she lived at home. Sara had volunteered at Animal Rescue League of Boston from 2004 to 2006, and never had any behavioral problems there, according to a letter of reference from the organization. She also participated in a special needs religious education program at St. Catherine’s Catholic Church in Norwood. Maryann said Sara also enjoyed volunteering with her at Rosie’s Place in Boston and serving dinner to abused and homeless women there. “Now (as a resident of the Becket residence) she gets to drive through a Burger King,” Maryann contended.
Turner’s guardianship report stated under the heading “future arrangements,” that over the next 18 months, “Sara will continue to settle in the program and expand her ability to access the advantages this program can provide her.” Nothing is stated in the report about restoring family contact with Sara. Yet, Sara’s separate individual care plan at Becket, dated July 24 and revised September 18, states that restrictions on family contact were not meant to last for more than three months.
Despite the negative assessment of the family’s impact on Sara held by Turner and Thompson, Ronald Ebert, a psychologist hired to evaluate Sara earlier this year, described the family as “concerned and active”; and Gail Quinn, Deputy General Counsel for the Disabled Persons Protection Commission, reportedly stated that she believed the Duzans to be “caring and loving parents who are very involved in their daughter’s life in order to provide her the best.” Even though he ruled the family as unfit to be guardians to Sara because they allegedly did not cooperate with certain providers, Probate Court Judge George Phelan stated in 2010 that the family had an “undeniable love” for Sara. Phalen concluded that “it would be inappropriate for the Court to exclude them completely in decisions affecting Sara.”
Guardian removed Sara’s mother as Social Security rep. payee
Turner stated in her guardianship report that she had terminated Maryann Duzan, Sara’s mother, as Sara’s Social Security representative payee in October because Duzan allegedly never provided an accounting to the court or to Turner of Sara’s funds, and because she allegedly refused to compensate a former residential provider and a Friendly’s restaurant in Hyannis for damage Sara caused to property there while on a community outing. Turner said she has applied to become Sara’s representative payee.
Maryann Duzan responded that she did pay the Friendly’s restaurant $275 in compensation for the damage. She said she filed accountings of Sara’s funds with the Social Security Administration, and was told she did not have to file similar accountings with the probate court because she was not appointed as a conservator for Sara.
We would question whether the Duzans should have been required to compensate the former provider and the restaurant for damage since all family members had been removed as Sara’s guardians and had no control over her by that time.
COFAR is continuing to advocate for Sara’s immediate return to her family. We urge readers to sign COFAR’s petition on change.org, asking Governor Deval Patrick and Department of Developmental Services Commissioner Elin Howe to allow Sara to return home to her family immediately.
Family is shut out of contact with special needs daughter
Maryann Duzan and other members of her family lost their guardianship of Maryann’s intellectually disabled daughter, Sara, in 2009, based on an admission by Maryann that she once slapped her daughter on the cheek, and the apparent perception that the family has been too aggressive in advocating for her.
As a result, a series of increasingly restrictive limits has been placed by court-appointed guardians and residential providers on family communication with Sara. Since June, the family has not been allowed to see Sara, who is currently living in a group residence in Westminster, MA, run by a state-funded, corporate provider.
As of late November, the family was prohibited even from talking with Sara over the phone. The family is afraid she is being subjected to what they consider abusive “restraints” by the group residence staff, but they have no way of determining what is actually going on.
Maryann contends her daughter, who is now 22, has been kept a virtual prisoner in the residence run by Becket Family of Services since late July. Sara has a condition known as Smith Magenis Syndrome, a genetic disorder characterized by intellectual disability and behavioral outbursts. The family maintains that the use of restraints to control those behaviors actually makes them worse.
According to the family, the restrictions on their contact with Sara and the removal of their guardianship occurred because they called attention to what they termed abusive restraints placed on Sara in previous residential programs in Northfield, NH, and New Marlborough, MA. Their claims about the New Hampshire facility, the Spaulding Youth Center, were corroborated by an attorney for the federally funded Disabilities Rights Center in that state, who found that Sara was repeatedly restrained by staff in the facility between 2008 and 2010.
According to Aaron Ginsberg, the DRC attorney, Sara was often restrained at the Spaulding Youth Center while naked or partially clothed for hours at a time, and male staff were often involved. She frequently suffered bruises and other injuries from what are known as prone restraints, and was subjected to hours of enforced seclusion, Ginsberg stated in an internal DRC memo. In addition, staff at the facility joked about Sara and other residents of the facility on Facebook, Ginsberg wrote.
Sara Duzan (fourth from left) celebrates a birthday for her grandmother with her family. Pictured are (from left) Erin Hachey, Sara’s sister; Maryann, her mother; Virginia Herrity, her grandmother; Sara; David, her brother; Paul, her father; and Tyler, her nephew. The family has not seen Sara since June and is currently not permitted even to communicate with her by phone.
Ginsberg further noted in the memo, dated November 8, 2010, that Sara’s behavioral outbursts appeared to be largely in response to physical restraints or the threat of their use from the staff at Spaulding. In his memo, Ginsberg stated: “In most incidents, Sara would not become aggressive until staff approached her or became physical with her.” Her family believes her aggressiveness in those situations was an attempt to protect herself.
A full investigation of Ginsberg’s findings was apparently never done by the DRC, however. Now, the family is concerned staff in Sara’s current residence run by Becket Family of Services are once again using excessive restraints on her.
The use of restraints to control behavior has become increasingly controversial. In an online paper written for the Minnesota Governor’s Council on Developmental Disabilities, attorney David Ferleger maintained that there “is a proven risk of death and other injuries” from the use of restraints, and that “programmatic and planned restraint is not therapeutic or educational.” He noted that prone restraints involve “the prone positioning of a patient, following which their wrists are secured behind their back, their ankles are tied, and their wrists and ankles are subsequently secured together by pulling the shoulders back and bending the legs towards them.” In a series of 214 cases of people subjected to prone restraints while in agitated delirium, death occurred in nearly 12 percent of the cases, Ferleger stated. Ferleger contended that only vertical person-to-person restraints should be allowed, and only for “a very limited time.”
Excessive restraints as well as communication and visitation restrictions could violate Massachusetts state regulations that require that people with intellectual disabilities receive humane and adequate care and treatment as well as the “least restrictive” level of care, and that they have the right to be visited. There may be violations as well of regulations governing the use of restraints.
For the Duzan family, all communication with Sara was cut off on November 26, two days before Thanksgiving, when Maryann received an email from attorney Lynn Turner, Sara’s current guardian, announcing that all further contact either by phone or in person was being “suspended indefinitely” and that the police would be called if anyone from the family or “an agent of the family” attempted “to come onto the program,” meaning the Becket Family of Services residence. Turner stated that this cutoff in contact was being instituted “as per agreement between the program staff and me.”
A few months earlier, a document provided to the Duzan family from Sara’s current residential program stated that the family would be allowed to make one 15-minute call a week to Sara, and that no one was allowed to discuss visits home or whether Sara was unhappy at the facility or its treatment of her. All calls were to be monitored by staff, and the family was to give a two-minute warning to Sara after 13 minutes that the call was coming to an end. Sara was specifically prohibited from talking to her family about any “dislikes about staff, residence, Becket,” or about restraints.
Maryann contends the family was allowed seven phone calls with Sara since the end of July, and during five of these phone calls, Sara made statements about being assaulted, punched, restrained and living in poor conditions. In those instances, Maryann said, the phone was disconnected shortly after Sara began making those claims.
Similar restrictions on family contact were imposed while Sara was at the Spaulding facility. The latest restrictions on family contact were put into effect despite the fact that a probate court judge in 2010 described the family’s “undeniable love” for Sara. The family’s apparent problem, as characterized by Norfolk County Probate Judge George Phelan, was that the family as a whole was uncooperative with providers and appointed guardians, and felt “only they know what’s best for Sara.” Phelan termed the family “ill-suited” for guardianship and “inartful.”
Colleen Lutkevich, COFAR Executive Director, maintains that the Duzan case illustrates the danger a family can face in caring for a disabled loved one if they lose guardianship of the person. Not only has the Duzan family lost all contact with their daughter, but they say they have spent their life savings on legal costs in their so-far unsuccessful effort to regain their guardianship. Their legal battle has been a byzantine one that has involved a succession of guardians and even a Special Master in July who is supposed to resolve disputes between the family and Sara’s current guardian. During this time, the state has paid at least three attorneys to fight the family efforts to regain guardianship, Maryann said.
Andrea Barnes, the Special Master, wrote in July to Maryann that she agreed that “it is important for Sara to know that contact with her family will be a normal part of her life…” But it does not appear that Barnes has acted on the family’s behalf to restore that family contact. Maryann wrote to Barnes on November 24 to ask her to get Sara out of the current residence because she thought she was being harmed there, but Barnes responded the next day that she had no reason to believe Sara was being harmed. Barnes promised only that she would visit the residence to check on Sara “sometime in the next few weeks, and will certainly let you know if I have concerns.”
Maryann Duzan and other family members initially gave up their guardianship of Sara in the wake of a December 2009 investigation by the Massachusetts Disabled Persons Protection Commission (DPPC) into allegations of abuse of Sara against the Duzans themselves, including an admitted instance in which Maryann slapped Sara on the cheek. Maryann contends Sara was browbeaten by the Spaulding staff to implicate her family in abuse.
Maryann said she slapped Sara on one occasion because Sara was acting aggressively while at home and was threatening to throw a radio at her. She said Sara was acting out because she was due to be returned to Spaulding the next day following a weekend visit home. Maryann said Sara did not want to go back to the New Hampshire facility because she was being physically abused there, but did not communicate that verbally to her family at the time.
The eventual DPPC report noted that aside from the slap by Maryann, the allegations of beatings of Sara by one or more members of the family were all the result of a statement given on one occasion by Sara to staff at Spaulding. The report concluded that the DPPC could not substantiate the allegations of abuse other than the slap by Maryann, and that Sara had never spoken negatively of any of her family members until the single occasion on Sept. 1, 2009.
While the abuse allegations against the family were under investigation, Maryann and her husband, Paul, agreed on the advice of their then attorney to temporarily relinquish their guardianship of Sara. The DPPC then filed numerous motions for co-guardianship arrangements in probate court that would limit the family’s involvement with their daughter. In October 2010, Judge Phelan ruled that none of the family members were suitable to be either guardians or co-guardians, and that Daniel Smith, the executive director of the Arc of Greater Fall River, should be Sara’s sole guardian. Phelan noted in his ruling that Smith had served as guardian for 24 other persons.
The major concern Phelan raised in his ruling regarding the family was not any alleged abuse by Maryann or other family members, but the difficulty that provider staff, guardians, attorneys and others allegedly had in dealing with the family as a whole. But despite the judge’s criticism of the family for acting as if they knew best about Sara’s treatment, the federal Developmental Disabilities Assistance and Bill of Rights Act states that families shall be the “primary decision-makers” in the care of their loved ones with developmental disabilities.
Meanwhile, in September 2009, allegations of excessive restraints used by Spaulding were reported by the Duzans to the Massachusetts DPPC. Maryann contends the family has tried for four years to report abuse and neglect of their daughter to the state. She says she sent graphic photos of injuries of Sara while at Spaulding to the DPPC’s deputy general counsel.
But, unlike the attorney for the New Hampshire DRC, no one from the Massachusetts DPPC investigated the family’s claims of abuse at Spaulding, Maryann and other family members maintain. “They (the DPPC) have made it clear they simply don’t care (about the alleged abuse of Sara by Spaulding staff),” Maryann’s son David, who was temporarily a co-guardian of Sara, stated in a detailed timeline that he wrote about Sara’s treatment from 2006 through 2010.
In June 2011, the Duzans’ new attorney, Michael Turner, alleged the use of excessive restraints on Sara at the Kolbourne School in New Marlborough, MA, where Sara was sent after Spaulding. Turner’s motion alleged that Smith did nothing about either the alleged abuse at Kolbourne or the previous alleged abuse at Spaulding, and that Smith cut off the family’s contact with Sara while she was at Kolbourne. Turner then proposed his wife, Lynne, as Sara’s new guardian. The family wanted other “options” for guardianship examined, but that apparently never happened.
In December 2011, Smith stepped down as Sara’s guardian and the Duzans agreed on Turner’s advice to accept Lynne Turner as Sara’s sole guardian and to sign a stipulation in probate court that they would never sue the DPPC, DDS, Smith, or their previous state-appointed attorney, George Marlette. They further agreed to sign a stipulation that no family member would even apply for guardianship of Sara for five years. Maryann said the family felt forced into signing the agreement to hold the parties harmless out of a fear that the family would never see Sara again otherwise. To avoid the appearance of a conflict of interest, Michael Turner stepped down at that point as the family’s attorney.
Today, the family considers Lynn Turner to be acting contrary to their and Sara’s best interests because she has upheld the Becket program’s restrictions on their communication with Sara. Once again, the family is unable to contact Sara, despite the assessment by a probate judge that they are a loving family to her. And once again, they fear Sara is being subjected to abusive restraints.
“All we want is Sara safely back home, never to be hurt again, and state agencies to stop retaliating against our family,” Maryann says.
We share the Duzans’ concerns about the situation Sara may be facing in her current residence. We hope the probate court will act quickly to return her to her home. We urge people to call their legislators to ask for their help in getting Sara back home. And we think this case merits an independent legislative investigation of all of its aspects.
The phone numbers for the Legislature’s Children, Families, and Persons with Disabilities Committee are (617) 722-1572 (Senate staff), and (617) 722-2011 (House staff). You can email the co-chairs of the Committee: Senator Michael Barrett at Mike.Barrett@masenate.gov and Representative Kay Khan at Kay.Khan@mahouse.gov.
In addition, you can contact: Governor Patrick constituent services at constituent.services@state.ma.us; DDS Commissioner Elin Howe at elin.howe@state.ma.us; and Attorney General Martha Coakley at ago@state.ma.us.
COFAR blog 